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!

 

 

 

 

 

 

 

 

 

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.

 

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.

 

 

 

 

 

 

 

 

 

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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VDR Pace Chemotherapy – the Zombie of cocktails

A further quick medical update as promised following on from my last post, The end of an era.  At an appointment on on 10 September that had been arranged with the lead transplant Consultant to talk about the possibility of a donor transplant after my auto transplant I was given the bad news that the percentage of abnormal plasma cells in the bone marrow was around 5 to 15 % and ideally it should be under 10% prior to transplant.  In consequence, much of that meeting was taken up with what to do about this.

The doctors were suggesting that rather than go ahead with the transplant on 17 September, I have one cycle of VDT Pace which is very heavy duty combination of 7 different drugs involving 4 days of a continuous cocktail of four different drugs given intravenously as an inpatient. The purpose of that would be to try and reduce my myeloma levels to be in the best possible position prior to transplant. I didn’t know much about it other than it was usually given to patients when all else had failed so it was a shock to me to be considered in this category.

I questioned whether this was really necessary as the one round of PAD I had just completed reduced my light chains to 49 from 100 so why not have another cycle of that but the consultants seemed to think that this regime should blast it, the equivalent to a Zombie cocktail in terms of strength.  I am partial to a cocktail or two but would probably never have one of these as it just contains too much alcohol!

Rather than questioning this further which would be my usual inclination I accepted it. I note this is more of a trend with me now, not that I have stopped keeping myself informed about Myeloma and treatments, just that I have given up thinking that there is a solution out there that is available to me and might be better.

For more detailed information about this treatment and the protocol, click on the this link, LNRCNDC001409_DTPACE1 . I didn’t have the T part (thalidomide) because I am intolerant to that so I had Revlimd instead. I also had Velcade added which technically makes it VDR Pace.

I started it on Thursday 18th September and I was allowed home the following Tuesday having tolerated the side effects fairly well apart from the main side effect of complete boredom whilst being attached to a drip! I think my facial expression says it all!

The rest of the treatment was oral Revlimid for 21 days and one further Velcade injection. I felt nausea, fatigue and had mucositis (a sore ulcerated mouth caused by the chemo). I can no longer remember the experience distinctly as so much has happened since then, save to say it was extremely grim.

A bone marrow biopsy was arranged for 23 October and I got permission from the Doctor to go away on a short trip to Europe, a week after the cycle ended subject to my blood test results being reasonably ok.  I decided on Menorca and had a lovely time. The only limitation being I couldn’t swim because of the PICC line in my arm but I was very happy and surprisingly active considering what I had been through being able to cycle along lovely country lanes and walk along some of the ancient Cami De Cavells.  I fell in love with Mr Boatsman, a rather handsome French Shepherd Dog belonging to my B&B host. Hard to believe my cycle had only finished the week before. This felt a world away and helped take my mind off what was coming next, my stem cell tranplant scheduled for 5th November. More on that in my next post.