Tag Archives: dexamethasone

At last some good news..

Yet again it has been so long since I last posted that I am having to play catch up.  Time has passed so quickly, the exceptionally mild winter moved as swiftly as the swallows and swifts arrived into an early warm and sometimes very wet Spring, fruit trees laden with pink and white blossom and new green foliage eagerly bursting through the soil. I was in hospital the latter part of March and half way though April last year having my cord blood transplant and more or less missed out on Spring so it has been a real delight to witness it this time. However it has been extremely hard to find the energy, concentration and inclination over the last few months to update my blog. I have tried and done the odd bit at a time but now I’m just going to get an update out there whilst I’m having a steroid day!  It isn’t all I wanted it to be but if I put it off any longer, it may never happen. It is somewhat a technical update about treatment which hopefully you will get through in order to understand the backdrop to my world the last few months.  Life with myeloma and on treatment has been even more of a rollercoaster ride than usual. Coping with the side effects of the treatment, fatigue, chemo brain, depression and infections has taken its toll. Although it has been about 5 months since my last post, time has a different dimension for me with little to distinguish one day to the next, yet although I am doing less, it doesn’t feel like it is passing more slowly. An average day for me might consist of a hospital appointment, going shopping or an hour in the garden or a meet up with a friend or watching TV and that is all I can manage except on steroid days.

Lets start with a (fairly) brief recap…

Late December 2015

I ended the last post on a bit of a cliff hanger as I was waiting for my clinic appointment on 31 December to find out the result of the light chain test from the end of the second cycle. It was very bad news, they had risen sharply to 3600mg/l. The hope that Revlimid might have kickstarted some graft versus host disease and with that some graft versus myeloma effect or that my new cells would be resensitised to treatment were dashed. I was desperate to switch to a different treatment but there wasn’t anything left on the NHS that was available to me apart from Bendamustine, an old chemotherapy drug from the sixties which seems to have had a bit of a renaissance recently for treatment of relapsed myeloma but really is the last resort. Rather than that, the boss suggested I have a third cycle of the same treatment but increase the amount of Dexamethasone (the steroid) to 4omg x 4 days each fortnight over the 28 day cycle, an enormous dose and add Clarithromicin to the treatment regime. Clarithromicin is an antibiotic which has been shown in a recent study to overcome resistance to Revlimid, incidentally a study that I came across and informed my consultant about!  In part the reason for the high dose of Dex was to try and help bring down my creatinine levels as they were elevated which was a sign that my kidney function was not good. The high dose dex might also help to keep a lid on the rising light chains as by now I was starting to feel the effects of active myeloma such as raised calcium levels, anaemia, fatigue and the reduction in kidney function. I seriously thought that I was approaching the end of my myeloma journey and that I might have about 6 to 12 months left. Note the word “left” rather than “live”. The psychotherapist on the Haematology ward whom I had been seeing didn’t try to dissuade me from my view but suggested I try and prioritise what was truely important to me if I did only have that amount of time left. What would I pack in my suitcase for 6 months, what would I leave out? What for 12 months?  I found that analogy helped me put in place some plans for life rather than be waiting to die. I still haven’t packed my suitcase though!

January 2016

I started my third cycle of Revlimid, high dose dex (interestingly sex, always comes up on my predictive spelling instead of dex but I certainly wasn’t prescribed that!) and added daily Clarithromicin. A rather depressing and anxious start to 2016.

I got a high temperature about 10 days later and had to go to A&E, which is standard advice when you are a haematology patient on treatment or recovering from a transplant. After about 10 hours on a trolley in a side room there, I was transferred to a haematology ward and pumped full of IV antibiotics and fluids.  I ended up staying in just under a week as I was still getting temperature spikes and the medical team were waiting for the results of swabs and blood cultures. I was given two units of blood as I was extremely anaemic and I had stage 2 acute kidney disease which used to to be called acute renal failure which is what led to my diagnosis. There is only one more stage! I had a very frank conversation with the boss on the ward round and she agreed with me that as no cause of infection could be identified and in view of my other symptoms it was more likely that it was active myeloma which was causing these problems. I was taken off Revlimid whilst in hospital as having chemo when poorly isn’t a good idea and it didn’t seem to be working anyway.

Lack of sleep, dex withdrawal, stress, anxiety and fear all played on my mind and I did think I was heading to a position where I was too ill to have any more treatment and the light chains would rise rapidly out of control ultimately in my case clogging up my kidneys and causing end stage kidney failure. After a lot of patient advocacy, I was released on parole 5 days later, the condition being I had to attend the day unit for the next few days for IV fluids, antibiotics and top ups of  magnesium, phosphates and potassium. They were long tiring days but better than being stuck in hospital and my kidney function improved.

At my clinic appointment on 18 January I  found out the good news that my light chains had gone down to 1300.  Praise the Dexamethasone! I felt a huge sense of relief and the fear that I was approaching the “end” subsided.  I started a 4th cycle of the same high dose dex regime on 26th January.

I have already described in previous posts, particularly in Dexamethasone the good the bad and the ugly just how badly I am affected by it, more the withdrawal or the crash than the actual days of taking it which just causes me to be a bit hyper and gives me some energy.  It is the depression, irritability with myself and others, low mood, lack of sleep, shakiness in my voice and hands and lack of mobility due to muscle wasting that affect me so much. My physical appearance changes too, weight gain and redistribution of weight to the torso, the red moon face and hamster cheeks, humped neck, bloated stomach and hair thinning that when I see myself in the mirror I hardly recognise myself.

February

Half way through the 4th cycle when I was tested again my light chains were down to 500mg and by the end of the 4th cycle they were 344. Everyone was happy. It helped me cope with the side effects of the treatment, knowing that it was working.

March

In early March I went for a short break to Sicily with my friend and travelling companion, Jet. It was a bit of a mixed bag health wise as I had sickness and diarrhoea for some of the time and the usual fatigue. It was unseasonably cold and wet too at times but it was a change of scene and I really liked the vibrant folk art paintings of a local painter, Fiore, some of whose paintings were in our B&B but we also saw him at work in his studio. I loved the painted plastic table and chairs outside it. What a transformation of boring white plastic outdoor furniture enhanced by the bowl of Sicilian lemons!

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On 26 March it was the one year anniversary of my cord blood transplant. There was nothing to celebrate about it apart from the fact of survival which is good of course, given I was given a 20% risk of mortality in the first 12 months. It was more a time to note and grieve the fact that it didn’t have the desired effect of my new immune system attacking the myeloma. I’m still not over the disappointment, but don’t know how to reach closure and let it go. Hopefully more about this in another post.  I didn’t have much time to dwell on this as on 28 March I was back in hospital again for a week with a high temperature, this time with parainfluenza 3 which in immune compromised patients can develop into pneumonia. I was given the usual IV antibiotics and fluids but had to stay in until my temperature was stable and they got results back from swabs and cultures so they could see what to treat any infection with. I hate being in hospital and didn’t feel ill enough to be there which I said to the doctors on more than one occasion but other than discharge myself and risk having to go back in again with a temp spike and lose my room, I didn’t have much choice. I was taken off Revlimid again and as my light chains had gone up to 440 at the end of the 5th cycle that caused me some anxiety.

April

On the weekend after I got out of hospital  I had just about recovered from the paraflu and felt well enough to travel to my parents to  celebrate my Mum’s 80th birthday, then I spent the following weekend in London with a friend taking in an exhibition about Monet and the modern garden and lots of good food. It felt good to be able to do these kind of “normal” things but when I got back I felt poorly and I came down with yet another viral infection with cough and cold symptoms, this time my old foe Adenovirus. I am only just getting over this nearly 2 months later and it has really wiped me out.  On 21 April I started a 7th cycle of Revlimid, Dex and Clarithromicin. Light chains were 98 at the end of the sixth cycle. That was a really spectactular drop especially as that cycle was messed up as I wasn’t on treatment for a week and a half.  I was delighted and relieved but slightly anxious that it could be a lab error. Also the boss pointed out recently that I did take a double dose of dexamethasone during that cycle.

May

Despite the fatigue and the virus, May has been a quite a busy month so far. In early May, I ventured out in the evening, a rare event, to a couple of dance performances. As a birthday present from my parents, I tried out my flying skills on a flight simulator which was surprisingly realistic and fun. I landed in Hong Kong and St Maarten in the Caribbean fairly successfully without taking off too many roofs!. Then over my birthday I celebrated with friends and family with lots of meals out and cake. I also did a lovely 5 mile walk in Dovedale in the Peak District. It was all quite exhausting especially as I was steroid crashing but I’m glad I did it. I really didn’t think when I was first diagnosed at 49 in 2010 that I would make it to 55. At that time there was a 40% chance of survival for 5 years.

I started an 8th cycle of treatment on 19 May. The dex dose has been reduced from 40 to 30mg for the first 4 days of the cycle to see how that goes. The boss thought my fatigue was due to the cumulative effects of the treatment and the viral infections.  I also found out the results from the 7th cycle, my light chains were up to 160 from 98. Although up a bit, I was relieved that the previous months result wasn’t likely to be a lab error as they were not far apart.

Ok that is the update done at last! I included some of the things I have managed to do as a reminder to myself that there have been some good times and productive enjoyable days, but mostly I feel like life has passing me by as the last couple of months have been really tough going, both emotionally and physically. There have been so many arrangements I have had to cancel or events that I wasn’t able to go too because I’ve been either been too tired, unwell, or just not the right mind to attend or all three. Then I berate myself for not going. I have learnt that fatigue is not about whether I sleep well or not, which I generally don’t, verging on insomnia at the moment, but like an insidious relentless brain fog. On steroid days I make all sorts of plans, have more energy and feel quite good. But in the crash period that follows all those plans go out of the window and I just try to get through the day. It means that going to weekly classes or getting involved in anything on a regular basis is really difficult to manage as I never know how I am going to be from one day to the next. My quality of life is fairly poor at the moment and that may not change as I will be on treatment for the rest of my life now. When the current treatment combo stops working as my myeloma develops resistance to it, I will switch to something else. There will be no periods of drug free remission, no more transplants, another donor transplant would be too toxic and unheard of. So my challenge remains as always to live in the moment and live as well as possible, accept my limitations, get the balance right and not give myself a hard time if I don’t always achieve it. As I like to think of myself as a pretty good card player, I find this quote very apt!

“Life is not a matter of holding good cards, but of playing a poor hand well.”

― Robert Louis Stevenson

 

 

 

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Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Travel, Uncategorized

Ain’t nothing but more bad news.

The post I had intended to write around the 7 months post transplant mark was going to be a slightly celebratory post about being able to enjoy “dirty” food having adhered to a clean diet for the first 6 months after my transplant. Following a clean diet means nothing unpasteurised, nothing live, no raw protein sources, superfastidious washing and peeling of fruit and vegetables, no open deli or bakery stuff and lots of other things. I didn’t majorly miss anything as my appetite was quite poor anyway. After 6 months I bought some of my favourite blue cheese, some unpeeled red grapes and was hoping to enjoy with a glass of red wine. The cheese was delicious but the grapes and the wine not so because of the GVHD in my mouth resulting in very altered taste. The taste is proportionately worse as the nutritional benefit of the food increases and I mostly enjoy extremely salty and/or sugary foods!

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Around the 6 month mark and except for the gruelling Cidofovir treatment I mentioned in my last post I felt I was getting stronger and less tired. I barely had time to enjoy my progress and recovery. So much has happened since that post 3 months ago I can do no more than briefly outline it otherwise I will continually be playing catch up which really isn’t what I wanted this blog to be about.

26 October

I got the devastating news that my light chains were rising from the test on 13 October, not just creeping up a little as they had been but going up sharply from 127mg to 634mg.  The plan to be off Cyclosporin (the immune suppression/anti rejection drug) and hopefully stimulate some more GVHD and graft v disease effect hadn’t worked  and wouldn’t work now that the myeloma burden was too high for my new immune system to have any control over it.

2 November

I started myeloma treatment which consists of Revlimid, an oral chemotherapy  which I take daily 3 weeks on and one week off and my old adversary dexamethasone, 40 mg once a week. I have had Revlimid before as part of VDR Pace but only for one cycle and I didn’t have any response to the regime. The hope is that now I have a fledgling new immune system, the myeloma may be resensitised to  Revlimid and/or it might provoke some GVHD.

5-7 November

A good weekend in London visiting a dear old friend taking in the excellent Weiwei exhibition, and the lovely Eltham Palace. I was tired but we managed to achieve a good mix of relaxing and doing.

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23-28 November

A shortish break to Gran Canaria with my lovely oldest friend (old as in length of friendship, not age). A bit of a mixed bag as I was not really well enough to enjoy it but felt pressure to do so because I had gone and thought it was an opportunity to get away whilst I was able to.  It was good to get some sun on my skin (through the factor 50 sunblock of course) and swim in the sea but I couldn’t enjoy the cuisine or the drink because of my altered taste apart from the divinely salty pimentos padron.

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30 November

I found out that at my last light chain test 0n 16 November, two weeks into the treatment my light chains had risen to 990mg. The plan remains the same which is to have 4 cycles of treatment, each cycle being 28 days. I was told to ignore this test, logically I know this is right for various reasons but emotionally I couldn’t. Given the depression I have been feeling combined with the treatment being so hard on me, it would have been some consolation to know that I was responding.  I wasn’t to be tested again to the end of the second cycle on 29 December and will shortly find out the results. Started my second cycle, no GVHD or major reactions so far, the boss thinks if GVHD hasn’t happened by now, it probably won’t. More bad news in a weird way.

21 December

Suspected urine infection with associated high temperature. Was reviewed in the Haematology day unit and discharged with antibiotics rather than being kept in. Phew! Some good news, the Adenovirus test was negative and the CT scan of my chest was clear in the sense that the persistent cough I have had for the past 4/5 months wasn’t caused by GVHD or anything else however it did show myeloma deposits in the cervical skeleton but they may have been there for a while and I’ve still got rhinovirus.

29 December

Started my third cycle and will find out the results of my light chain test probably tomorrow if they are back from the lab in time. I have been anxiously waiting the last 6 weeks for this result but today I feel strangely calm about it.

31 December

Clinic appointment………………………………..??????????????????????????

This is the post I have been too fatigued, depressed and anxious to write as I struggle to come to terms with this relapse less than 7 months after my allogeneic transplant and all that I have been through. I knew that myeloma would come back but hoped for longer. I can only write this today because I’ve got a little more energy and inclination from the dexamethasone. I am also aware that this makes painful reading, another reason for putting it off and that I don’t know what to say to people about how I’m feeling and I suspect most people don’t know how to respond. I think I just want to be able to express my feelings in their entirety, the good, bad and the silly and be listened to. More of this maybe another time.

My fears now are not that I will die of transplant related mortality although there is still a 15 to 20% chance that I could in the 12 months post transplant but more that I will die from disease progression, that the treatment will not work as the myeloma becomes more aggressive and I will run out of treatment options quite soon. I don’t think I am afraid of actually dying though as Woody Allen says “I don’t want to be there when it happens!”  What I fear more is what my quality of life is going to be like in the interim and whether I will be able to do the things that matter to me. I fear having regrets. So far I have found the treatment so gruelling both on my body and mind (especially the dexamethasone crash for 3/4 days), I am barely able to find the energy to do or concentrate on anything due to the overwhelming fatigue, low level infections and insomnia. My mind swirls with crap and I can’t do living in the present very well. I am neither feeling positive about my future or strong, more a sense of failure. I certainly do not want to be told to cheer up, stay strong or be positive. I think my views on being positive are already known to most of my readers!

This time of year also has so many disturbing memories for me too, being 5 years since I was diagnosed, the kidney failure leading up to that and my first relapse around December 2012. This year was the toughest yet, got to say that was mostly to do with dex withdrawal but taking them on 23rd December gave me the energy to bomb down the motorway to Somerset where I spent Christmas with my sister and family. I had pre warned them that I would be tired, grumpy, withdrawn and irritable. I think it went ok and I managed to retreat to my bedroom when I needed to without feeling under pressure to be merry but finding enjoyment in being with my family, especially my lovely 8 year old niece who outclassed me at Mastermind (the old code cracker game, not the TV quiz).

Anyway I am feeling tired now but pleased and relieved that I have finally got round to doing this post. There is a whole lot more that I want to write and explore but that will hopefully have to be for another time.

In the meantime I wish you a happy new year.

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

TS Elliott

 

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Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant

Baby Steps to Day 100

Picking up from my last post, Hard Graft, I was discharged from what I hoped would be my final stay in hospital on May 7th, day 41 post transplant. I had started an extremely high dose of IV prednisolone, (a corticosteroid similar to Dexamethasone) and was sent home with tablets of 175 mg to try and get my acute skin graft versus host disease under control. Those who have read my post on Dexamethasone, will know that I don’t get on with steroids, having very little of the highs and all of the lows. Although Prednisolone is less harsh than Dex, I soon started experiencing some of the side effects of these steroids such as insomnia which combined with the fatigue I was already experiencing made me feel very wiped out.

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This was me, Day 43 + transplant when I managed a steroid assisted 20 min walk, baby steps!

Still I did get some of the manic energy that steroids can give you, for me it was being slightly hyper, careless, rushing around, thinking that I’m capable of doing anything, being implusive. I’ve certainly had some incidents which I attribute to being on steroids such as:-

– Breaking my favorite bowls when I was rushing to put them in the cupboard

– Rushing to get back to the car as the time limit for parking was up and falling over just before I get there spilling my shopping.  A kind young woman cyclist stopped and helped me up, gathering my shopping together. no harm done just grazes and bruises.

– Making impulsive purchases without doing sufficient research such as an expensive swing seat for the garden which I saw online which turned out to be totally unsuitable.

– Slicing a banana to put into my porridge but putting it into the cup of tea I was making and the teabag into the porridge!

– Putting my newly acquired electric kettle on the gas hob to heat up.

– More seriously, a fall when I hit my face on the edge of a wheelbarrow when I was rushing up a step from the garden. Fortunately I had no more than cuts and grazes and a bruised upper lip.

– Scraping my car along the metal gate when I was parking it in the driveway, again rushing, an error of judgement, trying to cut corners.

After a couple of weeks of being on steroids, I developed the usual side effects, such as a puffy round face and a double chin, steroid induced diabetes, redistribution of body fat to the stomach and back. After another couple of weeks muscle wasting began to occur in my arms, legs and buttocks. I was also extremely shaky especially my hands, legs and my voice. I looked, sounded and felt like a nervous wreck. A couple of weeks after that, the shaking combined with the progressive muscle wasting and lack of strength in my legs meant I was also having difficulty walking. I started using a walking stick for stability but could not go far, getting up the stairs and moving from standing to sitting was hard.

Mood wise, I was irritable, short tempered and depressed, not really wanting to see anyone. I was also extremely anxious, worrying about everything from whether the transplant would work, whether I would die, whether the infections I had would turn into something more life threatening.

What I described in my post on dexamethasone is exactly the same as my experience on prednisolone.

I am depressed, tired and shaky, mentally and physically, I am easily irritated by myself and others, restless and edgy. Nothing I do or say feels right but I don’t know what would feel right. I find it difficult to be with people because I feel socially inept and lacking in confidence. My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected. I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

As my skin rash was clearing up the prednislone dose started reducing by 25mg weekly and a little more slowly when I got to below 50mg. By Day 97 the 2nd July, I was on 15mg but was still suffering from shakiness and walking problems however I was sleeping better at night which was a big relief

For someone meant to be resting and in recovery my days were busy with applying numerous creams for the skin rashes, taking the medication, attending clinic twice weekly to start with and then weekly, having visitors.  The days shortened and  the health chores or a hospital appointment would be a full days activity with the rest of the day for resting. I had a day and night on call rota of friends in May to help with shopping, lifts and anything else I needed which was great. But in June started the walking difficulties as well.  After the initial flurry of calls,  visitors and offers of help when I came out of hospital died down, I felt quite lonely and forgotten about. People think if y0u’re out of hospital you must be better but all it means after a stem cell transplant is that your neutrophils are above 1 and are stable so you are no longer neutropenic. The hard slog of recovering from an allogeneic transplant  goes on for 6 to 12 months. I was also fairly incommnicado as well due to the steroid effect. I watched a lot of tennis lying on the couch in the afternoon, the French Open, Queens and Wimbledon, what a godsend!

In early July I took my first trip away from the safety net of my own home and went by train to visit my parents for a few days. The train journey from Manchester to Hereford is a pleasant one and for the first time in a good few months I saw proper countryside from the train window, fields of yellow and green, big skies and the rolling Shropshire hills. I felt happy and a little lighter in my heart.

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The trip was a good one and miraculously the shakiness disappeared as did the anxiety. Maybe they fuelled each other? I was able to write, type, do up buttons, use a knife and fork properly, hold a glass or a cup and lots of other useful things that we take for granted . It was day 100 post transplant on Sunday 5th July and we celebrated this milestone with a bottle of prosecco although I couldn’t drink any because it tasted disgusting as my sense of taste has been affected by the chemotherapy.

Day 100 is a small milestone in the life of a post allogeneic transplant patient because its the day when symptoms of  GHVD are no longer considered to be acute and any symptoms that start after that are considered chronic. I also had a bone marrow biopsy to determine the level of abnormal cells in my bone marrow on day 97 to see how the transplant was working on the myeloma. I think that the first 100 days have the highest risk of transplant related mortality so I was relieved to have passed that point. By Day 100 I’d had two chimerism tests which showed I was 100% the donor’s blood cells.

This means that I have 100% bone marrow and consequently blood cells of one of the cord bloods. It turned out to be the Australian male cord blood that won over the UK female one. So am I an aussie! Not exactly as whilst my blood is, the rest of my body is still me so I would have different DNA results depending on whether the DNA test was taken from my blood or say my hair (if I had any!). This is good, the other outcomes could be no chimerism or mixed chimerism. Whilst it is a good sign, it does not necessarily mean that the my new new blood cells are recognising my myeloma as foreign and so attacking them and so with some apprehension I awaited the results of the bone marrow biopsy.

More on that in my next update to follow shortly, sorry about the cliffhanger!

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The Party’s Over

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At my clinic appointment on the 1st August, I found out that my kappa light chains had risen quite considerably from 54 to 195mg/litre (up to 19 is normal). So it seems that the increased dose of  Velcade that I referred to in my last post Upping the Ante had no effect.

The new,  young and pleasant doctor I saw who has replaced the lead myeloma specialist, Dr Gibbs, who sadly (probably not for him!) went back to Australia wasn’t quite sure what to do next although it was clear that I would coming off trial. He asked me to attend clinic the following Wednesday to allow him time to speak with his colleagues about the best way forward. I appreciated the fact that he did not try to hide his inexperience.

I spent a rather wet weekend staying near Penrith in Cumbria with some friends. I was pretty anxious and gloomy about what is effectively a second relapse, my anxiety and fears exacerbated by steroid withdrawal. However the gentle beauty of the Eden Valley, the moody majestic peaks of the Lakes, even in the pouring rain,  combined with the company of good friends helped take my mind off my situation.

On Wednesday I saw the same Doctor again. He suggested that I had one cycle of PAD which is a more intensive treatment regime and lasts 21 days, the aim of which would be to knock the light chains down to closer to normal range. After completion of the cycle I will have a bone marrow biopsy to assess the percentage of abnormal plasma cells in my bone marrow and if less than 10%, I will be having my second autologous stem cell transplant probably around mid to late September. The party is over!

I have had the PAD regime before, two cycles in fact during my induction treatment prior to my first transplant. It includes Velcade, a very high pulse of Dexamethasone each week and a standard chemotherapy agent called Doxurubicin.   There is the possibility that my disease has already become resistant to Velcade but it is at a much higher dose on the PAD regime and works synergistically with Doxurubicin so fingers crossed, it is a tough regime but bearable if only for one cycle.

I am now on Day 15 of the cycle and have finished the treatments in the day unit but what is left this last week is the worst for me, the dreaded steroids.   I’ve already described in my post Dexamathasone just how awful I find them.  I have been on a very low dose over the last 6 months (just 16mg a week) and found the effects minimal . The first week of this new regime I was on 160mg!!  Not so bad the days on, apart from sleepless nights, but the crash from Friday to Sunday is unbearable.

It’s not going to be a pleasant or easy next few months but at least it is a plan, the absence of which I have struggled with over the last 6 months or so.  I knew that Velcade wouldn’t last forever and that I would be having a second stem cell transplant, it was just a question of when.  I would have liked more control over the timing and to have avoided the need for further chemotherapy but it is virtually impossible to have any control over the course of this disease. I suppose I could have chosen to have had the transplant when I had reached complete remission after 5 cycles at the end of November but I decided with my consultant to continue on the trial on a lower dose and extend the cycle to a five weekly one. I guess this was a bit of an experiment for him as velcade as maintenance therapy is quite new and untested. My quality of life was pretty good and as I have learnt there is no rush to proceed to the next treatment/procedure as none of them are curative. If something is working with minimal side effects then why stop it?  The downside is living with a very stressful level of uncertainty, having to waiting for results at end of each cycle to determine if I should start another cycle but I was learning to live with it.

I started this new regime exactly 12 months to the day after starting treatment following relapse when my light chains were 6000mg/litre and I  was becoming quite ill with myeloma again. I’m in a different place now, both mentally and physically. It will also be just over three years since my first transplant on 1 September 2011. There seem to be numerous coincidences date wise in my journey with myeloma, I think they exist for all of us but perhaps they are more firmly implanted in my memory. There are significant ones that I will probably never forget such as the date of diagnosis, date of transplant, date of starting a new treatment, date of relapse as well as anniversaries of the same. And of course I have had to become fanatical about writing down on my calendar, dates and appointments for clinic and treatment, having attended hospital over 100 times this past 12 months for treatment!

I thought when I started treatment a year ago that my life would be curtailed by the effects of the treatment but after a tough first few cycles I have enjoyed pretty good quality of life. I’ve been able to carry on working, play tennis, take part in a triathlon, go on hikes and of course holidays of which there have been many!  In essence I’ve had the outward veneer of a “normal” life but beneath the surface is my cancer world, with its endless hospital appointments, tests, fatigue, stress and infections. I find it hard to integrate the two worlds, part of me doesn’t want to (and hasn’t really had to) but as I move closer towards a second transplant I don’t think I will have much choice.

I went for a lovely walk yesterday below Kinder in the Peak District, the heather on the moors was abundant and beautiful with a fragrant aroma of honey, the leaves have started to fall and the sun was mellow and low. The school holidays are coming to an end and autumn is almost here. Approaching my transplant and the next stage of my journey feels like going back to school after the summer holidays.  New uniform, new classes, teachers, a little more grown up, apprehension mingled with curiosity about what lies ahead.

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Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma, Remission, Travel

Upping the ante

I haven’t posted a medical update for a while partly because there hasn’t been much to report and partly because I’ve been enjoying life and this fabulous hot summer we are having in the UK seems to find a way of taking up most of my free time. I have been away a lot, trips include to Somerset to visit family, Orgiva in Andalucia to visit a friend  and a visit to Otley to see the Tour de France Grand Depart and more recently a short break in the Manchester Royal Infirmary!

Some photo’s below although not of the MRI!

 

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So here goes. I have nearly completed the 14th cycle which is now a 5 weekly cycle with Velcade once a week for the first 4 weeks plus of course the dreaded Dex (steroids) which is a fairly low dose now and I have remained on the Onyx Endeavour trial (see my post Urine saves the Day) My last Velcade injection was yesterday. It is usually on Mondays but on Sunday night after a fun weekend in Nottingham visiting friends I had to go to A&E with a high temperature (39,2*), anything 38* or over is considered reportable plus I’d had diarrhoea and was feeling shivery. Damn nuisance. I arrived 10pm and eventually was given IV antibiotics and told I would be admitted. I lay on a hospital trolley in a hot room with bright lights and the sounds of other patients groaning and kicking off which wasn’t conducive to sleep.  At 4am I was admitted to a bed in a side room on the Acute Medical Unit, slightly better but not a minute’s peace with interruptions for observations, forms to be gone through,drips to be attended to and no pillow! Managed to doze till around 8.30am when I was brought some welcome tea and soggy toast. And then the usual wait to see the ward doctor and much later on a doctor from haematology. I persuaded the haematology doctor to discharge me with oral antibiotics  as my temperature was stable and I hadn’t had any diarrhoea for a while. He agreed on the basis that I said I would have some one with me that evening and would call haematology if my temperature went up again. Yes of course I said to both although a little vague on the former so I was eventually discharged early evening, phew!  An initial diagnosis was viral gastroenteritis.

I am much better for being at home and resting and the diarrhoea is on the way out!! These things happen when on treatment and any infections have to be taken seriously because of my lowered immune system but fortunately this is the first admission I’ve had in the 12 months since I started treatment and apart from the flu I’ve got off fairly lightly. However the love affair with velcade may be coming to an end soon as my kappa light chains have risen again out of normal range even on our lab tests (see my post not good not bad ). At my last clinic appointment on 27 June, it was agreed that I would have another 5 week cycle at an increased dose (from 1.0 to 1.3 so about 30%) but if that didn’t either keep my light chains in check or even better to decrease then I would proceed to an autologous stem cell transplant either without further treatment or with a more intensive cycle of chemotherapy depending on how high my numbers have risen and/or the results of a further bone marrow biopsy.

My next clinic appointment is tomorrow and I will find out the results of the light chain test I had done on Monday (this was after my 3rd Velcade injection). I feel surprisingly calm about finding out the results tomorrow which will determine the next stage of my journey. I realise that I may be leaving my readers on tenterhooks, a little taster of how I feel most of the time but the  waiting is nearly over and I promise to do another update shortly on the outcome!

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Urine saves the day!

Since I started showing signs of relapse in January 2013, I have been living with a huge amount of uncertainty as anyone does with an incurable cancer, there are hopefully periods of remission and stable disease as well as time of treatment and recovery, but through all that time, my light chain results are a constant source of anxiety and stress.  I am still trying to cope with that feeling of always being on a knife edge. At the  clinic appointment at the end of each cycle the focus is on my latest results. Are they in normal range,  what happens if they are not, what happens if they are, will I have another stem cell transplant, when will that be? Am I normal (they can’t answer that!)? The last few months my kappa light chains have been teetering on the upper edge of normal range. What does FLC Kappa 3.3-19.4 mean to you? Nothing hopefully!

What does it mean to me?  Everything, it is the holy grail. It defines the normal range for kappa free light chains which we all have but which are elevated in the type of Myeloma I have. Being in normal range generally signifies complete remission. Before I started treatment after relapsing last year they went up to 6000. At diagnosis they were estimated to be over 10,000. Now they have been creeping up and are 44..3 according to the latest trial test results and 23.4 according to our lab results so since my last post Not Good Not Bad, they have become less good and not normal. Also as there have been 3 trial results consistently out of normal range I am considered to have relapsed according to the trial criteria. There was some concern at my last clinic appointment that I would be kicked off the trial. Plan A was to apply to the trial sponsors for approval to remain on the trial. It would take a few days to find out if I could. However it wasn’t clear what Plan B was going to be if we didn’t. I came away from my appointment feeling abandoned and confused as my consultant (whose last day it was) was returning to Australia and seemed very uncertain as to the alternatives. I guess it wasn’t going to be his problem anymore but I left with no follow up appointment, no Plan B and no start date for another cycle.

Just prior to my appointment I had booked a week’s holiday at a yoga retreat in Ibiza. Because I was in such an anxious state I nearly decided not to go, my anxiety compounded by coming off the steroid dose I had taken early in the week. But I did go and doing 3 hours of yoga a day in beautiful surroundings proved to be a great distraction.  I found the yoga both physically and mentally challenging and it was good for taking my mind off my situation. And yes I really was there for the yoga and not out clubbing every night! I have always wanted to go to Ibiza and it lived up to my expectations and is a beautiful island with a nice vibe (now does that sound a bit like I’ve been clubbing!).  Apart from doing yoga, I went to the nearby beach to watch the sunset most evenings, read and rested quite a lot, swam, sunbathed, took some walks and explored the island. I think the photos show just how chilled it was (it’s not me in the yoga poses!)

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I found out towards the end of the week in Ibiza that the trial people had said I could remain on the trial because my urine results were stable and that is what they look at in conjunction with the light chain blood tests I have been having. Yippee but unexpected reasoning. Every 28 days as part of the trial disease assessment tests I have to do a 24 hour urine collection which involves peeing into a large container over a 24 hour period and bringing it in to the hospital the next day. I initially thought they sent off the whole container to the trial lab in Paris but it turns out that they mix it and mix it and reduce it to a small pot to be sent off! Anyway I have never paid attention nor has my medical team to the results of those samples as the SFLC (serum free light chain test) is considered to be more accurate and obviously much more convenient. Prior to the trial the only other time I did a 24 hour urine collection was when being diagnosed. Quite why they place more reliance on this rather outdated urine test rather than the SFLC test I don’t know, it also seems odd that my medical team didn’t know that. Had they known that we could have avoided all the stress and uncertainty at my last clinic appointment.

So I get to stay on the trial and started a 13th cycle a week ago, thanks to my urine which remains frothy, see my post Frothy Urine for an explanation of why. I have stopped being concerned about that but really it is the only symptom I have that has been caused by myeloma and reminds me on a daily basis that I have myeloma at the moment. I feel fortunate compared to others I know who are dealing with bone pain and lots of other issues caused by Myeloma.

As to what the plan is, there isn’t one, it is really just a case of waiting for the results at the end of each 5 week cycle and then deciding whether I start another or go off trial and proceed to second autologous stem cell transplant.

In the meantime, here’s to my urine!

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Viva Las Velcade!

This post is about the wonderful Velcade, the chemotherapy that I am on. If you want to know more about it you can click on the link.  I have started my 10th cycle of Velcade and Dexamathasone on the Endeavor trial, (very aptly named as it certainly feels like an endeavor!). My disease is stable and my kappa light chains in normal range since the end of the 5th cycle (see my post And on the sixth cycle). So good news, I’m still in remission!.

Hey, this warrants the inclusion of the dancing cat from an old post! I love the dancing cat but have some reluctance about putting him on again because  the post that I used it on to celebrate the fact that a previous test result that was sky high was erroneous but later on I learnt that it was right, the test that was wrong etc. I do hope that the dancing cat isn’t a bad omen.

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What the heck, lets throw in the ballerinas as well!

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I’ve been on continuous treatment for over 6 months now. I have become so used to this extraordinary way of living that it is not extraordinary to me anymore. I have attended the haematology day unit Mondays and Thursdays for the first two weeks of every cycle to receive a subcutaneous injection of Velcade (that makes 36 times). I leave work around lunchtime then go the day unit.  I sometimes have blood tests first and observations are always done. The Velcade comes out of the fridge having been ordered from pharmacy especially for me. The curtains are drawn around my chemo chair to give some privacy and I expose my bruised and battered stomach for the nurse to find a new site in which to inject the Velcade. She pinches some fat (of which fortunately there is plenty) between her fingers and injects the velcade over a period of around 10 seconds. It stings whilst it is going in and after I have had my observations done 15 minutes later I am free to go. The whole process generally takes around an hour but sometimes longer depending on how busy the day unit is.

I have never felt any immediate side effects and quite often go food shopping on my way home and or go for a run. I may feel tired later but that is counteracted by the steroids that I take on the day of and the day after treatment. A couple of days after the injection, the site starts to redden and bruise and gets extremely itchy and sore. I’ve been experimenting with different lotions and potions, aloe vera gel provides some relief. Other than fatigue which has lessened over time, I suffer from constipation and more recently aching calves. My legs feel like I have walked 10 miles but I have done nothing at all. This could be due to nerve damage caused by the Velcade, one of the main side effects of Velcade is peripheral neuorpathy but this is usually in the hands and feet. My consultant is keeping an eye on it.  The other side effects I experience are more to do with the steroids but as the dose has been reduced these have lessened.

Since my light chains went into normal range, the dose of Velcade and Dex has gradually been reduced to minimise the side effects. The previous 9 cycles involved 4 doses of velcade over a 21 day period, the 10th cycle is less dose intensive and involves 4 doses of velcade over a 35 day period. This is the lowest dose possible on the trial and the idea is for it to be more of a maintenance dose. I will have another stem cell transplant this year but I don’t know when. It rather depends on whether and how long my remission is maintained on the maintenance dose as at some point my disease will become resistant to it.  I never know what will happen from cycle to cycle or how many more cycles I will have and neither does my consultant, we just review matters at my clinic appointment at the end of each cycle. I have got used to living with uncertainty like this but it is tiresome to explain to others in the normal world.

When I finally started chemotherapy last August I assumed that my life would be on hold, that the side effects would be too great to really do much and that I would wait until after treatment to recommence my life but although the first couple of cycles were a bit rough, things have got better.  I suppose my body has got used to Velcade and the reduced dose of steroids has really eased the low mood I talked of in dexamethasone the good the bad and the ugly. Life is too precious to ever be on hold, even on bad days, it is for living now to the best of my ability, whether on chemotherapy, in remission (or both) or even when relapsing.  It is almost impossible to make any plans but in my week off treatment at the end of each cycle, I have taken trips to Majorca, Cornwall, Barcelona, Somerset, London and Lanzarote (yes that was where the photographs were taken in my last post, Keep your chin up).  I’ve also been working (to pay for all these breaks!), playing tennis, walking, getting back into running,  and in a couple of weeks time I’ll be dog sledding in Finnish Lapland!

And so I have my extraordinary routine which I have incorporated into my fairly ordinary life.

Viva Las Velcade!

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Taken in El Golfo, Lanzarote

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Keep your chin up!

I’m intending to write a series of posts exploring some of the classic cliches and phrases that I have come across since my diagnosis with cancer. My last post Why I won’t be getting run over by a bus any time soon was the first of these and is about the chances of getting run over by a bus and the reality of living with a life shortening diagnosis. This post is about the phrase “keep your chin up” which has been said to me on more than a few occasions. Now if it is said to me on the basis that keeping my chin up will help to mask the double chin I currently have (I blame that on the steroids!) then fine, it may be a little blunt but yes it is good advice for minimising a double chin! Hey I might even get one of these!

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However I think it is generally said to encourage me to stay strong and positive in the face of adversity, not to cry with my chin down.  More on positivity in a future post as part of this series but the phrase grates on me and I have been trying to figure out why.  I think it is because it takes away from my right to feel down or upset and places the onus on me to alter my mood rather than perhaps empathising with me, for example, by saying yes you’re in a pretty shitty situation and I’m here for you.  I know people mean well when they say it but there are times when I don’t want to or can’t keep my chin up. I may just want to express my grief, depression or fears or whatever and be a blubbering wreck without being told to keep my chin up, stay positive etc etc.  I have a sneaking suspicion that this is more for the benefit of other people than me. Its my party and I’ll cry if I want to comes to mind.

I really like this RSA short animation below on the power of empathy and it helped me understand the difference between sympathy and empathy.

And I’m not saying that I am the perfect empathiser, far from it, I’m just saying!! You will be relieved to hear that I am mostly “keeping my chin up” these days, being on a much reduced dose of steroids has helped with my low mood and paranoia when withdrawing from them in my week off treatment. I am maintaining remission but still on treatment ( a medical update will follow shortly).  Life is pretty good in spite of the endless visits to hospital for treatment and review, I’ve just come back from a few days break abroad in this place.  See if y0u can guess where? All will be revealed in my next post!

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And on the sixth cycle …..

Velcade gave me complete remission!

I’m half way through my seventh cycle of Velcade and Dexamathasone and the time from the start of treatment in August seems to have whizzed by. In some ways I am surprised by how normal life has been. I have had an excellent response to treatment, my kappa light chains are now in normal range and I am in complete remission.  The plan is to strengthen that response with another couple of cycles followed by a stem cell transplant (from my own stem cells) and then possibly a donor stem cell transplant a few months later. I try not to think too far ahead to these procedures, as the latter especially is not without considerable risks.

I am fortunate that apart from the awful dex, (see my post, Dexamethasone, the good the bad and the ugly) the side effects of the treatment have been fairly minimal and I’ve tolerated it well without all the numerous infections and issues I had on my initial chemotherapy. Managing to work, rest and play including trips to Palma, Cornwall, London to see the ATP world tour mens tennis finals. I also went to Barcelona and Girona a couple of weeks ago where I took these photos of the sparkly Christmas decorations and the stunning Sagrada Familia by Gaudi. I was disappointed to see that it still hasn’t been finished though!  I’ve also started playing tennis again after recovering from a painful  and debilitating nerve compression problem in my neck (which I am pleased to say turned out to be nothing to do with myeloma). Oh and I’ve also started running again mostly on dex days! In fact the outward appearance of my life is so “normal” that I think people forget I am on chemotherapy!

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For the past few years this time of year has been associated with bad things happening in my life.  It was just before Christmas in December 2010 that I was diagnosed with myeloma, I described how that was in my post The Nightmare before Christmas.  And this time last year I found out that my light chains had risen out of normal range which turned out to be the start of an upward trend signifying relapse and a turbulent and stressful 2013 at times. I’m hoping this Christmas on my 7th cycle will be completely uneventful, with the only thing hanging over me caused by over indulgence!

It is three years today since I was diagnosed with myeloma  so today is a milestone of sorts. According to the most recent UK stats for survival  from Cancer Research UK  (http://www.cancerresearch.uk.org/cancer-info/cancerstats/types/myeloma/survival/multiple-myeloma-survival-statistics)

I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive 5 years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or the 14.9% that survive 10 years? Who knows?  I hope so and I know there have been further improvements in overall survival rates since this study due to the newer and better treatments but realistically there is a very strong possibility that I won’t make my 60th birthday or even my 55th.  Of course I feel sad about that but on the upside, at least I won’t have the stress of planning how to celebrate it!  However there will be the pressure of trying to make the most of the birthdays I am around for as as well as the dilemma of how to live a significantly shortened life.

The milestones like birthdays, number of years post diagnosis, stem cell transplant anniversaries etc are great but counting the milestones as simply the passage of time is meaningless. It is about how we spend the time between each milestone that matters.  I can’t very well live every day as if it is my last but want to make sure that I spend as much of my precious time as possible doing things I enjoy, being with people I love and care about and having fun.  So no pressure then! The counter balance to this is accepting the times when I am  feeling down, fatigued, ill, horrible, anti social etc etc are not a waste of my precious time and that I don’t have to do anything for the sake of “making the most of whatever life I have left”.

I love the lyrics to this song by Leonard Cohen, (A Thousand Kisses Deep). I don’t know what they mean to him but to me they sum up my experience of living with myeloma, the periods of remission, relapse and dealing with a reduced like expectancy.

The ponies run, the girls are young,
The odds are there to beat.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.

I’m turning tricks, I’m getting fixed,
I’m back on Boogie Street.
You lose your grip, and then you slip
Into the Masterpiece.
And maybe I had miles to drive,
And promises to keep:
You ditch it all to stay alive,
A Thousand Kisses Deep.

Felices fiestas

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Dexamethasone: the good, the bad and the ugly

I have a hate/hate relationship with Dexamethasone, but I have to acknowledge that it has knocked my light chains down all on its own prior to starting treatment  and whether I like it or not, it is part of my treatment and I have to get on with it. This is about my relationship with Dex.

The Good Stuff

Dexamethasone is a corticosteroid seemingly used in all treatment combinations for myeloma and sometimes on its own, in fact Dexamethasone, given in high doses, is the most active single agent for the treatment of myeloma.  I find this quite astonishing given the development of the many new drugs over recent years.  Dex also increases the ability of chemotherapeutic agents to destroy myeloma cells as well as helping reduce inflammation and allergic reactions to chemotherapy. Quite why or how it is so effective in the treatment of myeloma nobody seems to know.  It appears to cause programmed cell death, also known as apoptosis and can trigger the destruction of myeloma cells.  So that is really good.  I know this absolutely as before I started treatment waiting for the trial to start I was given two 4 day courses of Dex with about a month in between to try and keep the myeloma under control. Before I started the second course my light chains had gone sky high to 6400 but a couple of weeks later they had dropped to 2900.

However it does come with many strings attached in the form of side effects. The good ones for me are:-

1. More energy on the days I take them. I don’t take them everyday but on days 1,2,4,5,8,9,11 and 12 of my 21 day cycle, I take them on the day I have Velcade and the day after. Thanks to Dex, I have danced, stayed up later than usual, played tennis,  tidied up the garden for the winter and cooked dinner for friends.  Dex has helped overcome the fatigue caused by the chemotherapy. I am usually more upbeat and confident on dex days.

2. Erm, can’t think of anymore good things………

Although not a side effect, I quite like the fact that the tablets I take are supplied by Onyx (the trial sponsors) and the writing on the box is in German with a leaflet stuck  onto the box in many languages. The tablets are also quite pretty as they have a curvy criss cross pattern and they are 5mg per tablet whereas the UK standard ones are 2mg. My trial bloods are sent to a lab in France to be tested so I feel as if I am participating in some special stylish european project!

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The Bad

1. Insomnia and sleep disturbance. I am often wide awake at 3 or 4 in the morning, unable to get back to sleep but also unable to do anything useful with this time other than stressing about how I am going to get up for work in the morning.

2. Dex gives me an insatiable appetite for sugary junk food and this is precisely the kind of food that I shouldn’t be eating at the moment because I have steroid induced diabetes. Dex raises my blood sugar levels on the days I take it and I have to be careful what I eat ie cut out the sugary, refined foods which are what I crave.  I monitor my blood sugar levels with a testing kit although it has never been made clear to me what I should do if they are too high or what symptoms I might experience. The docs wanted to put me on Insulin but I said I would try and manage it through diet. However on the days I don’t take dex, I eat plenty of cake and anything else I can find in the cupboard or the fridge.

3. Following on from the above, not surprisingly is weight gain, can’t sleep, have something to eat, crave food, raid the fridge etc etc, I can still find plenty of non sugary junk food to eat. Weight gain is pretty common on steroids, unfortunately corticosteroids are not the type of steroids which can turn fat into muscle, I think those are anabolic steroids.

4. Muscle wasting,  I have gone from a fit triathlon competitor to a soggy shape in the space of a few months. Oh how the mighty have fallen!

5. On from the above, I wish I could channel the energy that dex gives into doing some exercise but unfortunately another side effect that I experience is heavy legs, they sometimes feel like they are filled with concrete which of course makes it difficult to run, walk or do anything much.

6. Slightly blurred vision, like my glasses always need cleaning.

7. Hirsutism and thinning of hair on the scalp.  I have more facial hair and a faint moustache but my hair is thinning on my scalp. Not very attractive!

8. Red round face, often called a moon face, the classic sign of taking steroids. People on steroids should have their own Moonies cult!

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Whilst googling images of a moon face, I came across this image below about Cushings Syndrome which is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Long term use of dexamethasone can lead to Cushings Syndrome and it appears that I already have quite a few of the symptoms!

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What I experience above is awful but I can put up with having a moon face (with a moustache), being overweight and exhausted in the knowledge that Dex is helping my treatment work and when I stop taking it these symptoms will eventually disappear.  In the meantime I can work on my vanity issues!

The Ugly

This is much harder to deal with.  The ugly happens more when I am withdrawing from dex especially in week 3 of my cycle.  My consultant wrote on the consent form that I signed before starting treatment that it caused “emotional lability”, the medical definition of which is “a condition of excessive emotional reactions and frequent mood changes”.

I guess that sums up my experience in a clinical way although my mood doesn’t alter much between low and high, more like low and really low. I am depressed, tired and shaky, mentally and physically,  I am easily irritated by myself and others, restless and edgy.  Nothing I do or say feels right but I don’t know  what would feel right.  I find it difficult to be with people because I feel socially inept and lacking in confidence.  My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected.  I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

I have to keep reminding myself that what I am experiencing is a purely chemical reaction in my body to the lack of the steroid it has become accustomed to and that once I stop taking it eventually I will return to my “normal” state of mind. Not sure what that is these days as this year so far has been full of emotional turbulence. Whatever it is, I look forward to finding out, who wants to be normal anyway!

“It may be normal, darling; but I’d rather be natural.”
― Truman CapoteBreakfast at Tiffany’s

 

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