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.
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.
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.
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.
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.
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.
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.
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.
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.”
15 responses to “Ain’t nothing but more bad news.”
Another great post…thank you for the update on this tough journey of yours.
We wish you the very best for the New Year.
Hugs from San Diego
Colum and Bruce
Thanks Colum and Bruce xx
Wendy: I’m so sorry to hear that your numbers are rising. May I ask: what dosage of Revlimid are you taking? (My husband has had MM since 2011… had an auto SCT in 2012). He has been on Revlimid since 2012. He is currently on Revlimid 15 mg. (21 days on, and 7 days off.); he also takes the 20 mg. dex once a week. But my question: this presumes that you’re on a low dosage of Revlimid: can you increase the Revlimid? Up to 25 mg? I realize it doesn’t work for everyone, but it has such a good track record. Need to make absolutely sure you can’t benefit by jacking up the dose. Maybe you can leave out the dex. Sometimes velcade is added to the Revlimid. Don’t give up. There’s still drugs out there —- one which was recommended to us (by a physician at Harvard) — a new “class” or series of drugs, is “anti CD 38.” Ask your dr. about this one. This is not over yet. In a separate email, I am sending you info on “anti CD 38.” Also: you should be getting blood tests every two weeks, given the fact that your light chains are rising. (At the very least, once a month). Quite frankly, in my opinion, Your blood “numbers” need to be monitored more closely. But there’s still other options out there for you. Please post your results… if you’re up to it. Those of us reading your posts really do care for you.
Pam in Oklahoma, USA.#
Hello Pam in Oklahoma
I am on the maximum 25mg dose of Revlimid. Some of the new drugs, including the one you mention, Daratumunab, are not available in the UK yet except on trial which I am probably not eligible for. Most of the newer drug combos are not available either.
Thanks for your concern.
You have had hard news indeed Wendy.Thank you for your honesty. I am walking with you in spirit. And no, I won’t tell you to “look on the bright side etc etc etc”.! I am wishing a new trial drug for you and kindness in 2016.
Thanks Brenda, I’m still not finished with Revlimid yet and there will be further options ahead so we’ll see. Hope this finds you well with all my best wishes for 2016.
thank you Wendy. I have just finished an eighth month course of Velcade, Dex and cyclophosphamide after relapsing. We shall see what effect this has had on the MM.Whenever I feel like “winging” I remember all you have gone through, your courage, humor and grace. Your posts have helped me cope.
Thank you Wendy for your post. Although the outcome may not seem to be going in the direction you want right now, try to stay positive. The fight is never over until it’s really over. I wish you a happy new year, less fatigue, more energy, a new clinical trial, and lower m protein numbers….
Hi Wendy, Thank you for sharing so beautifully what you are going through. I am bowled over by your spirit. Wow. I’m going to chant right now for you to have only good news from now on (I’m sure we’ve talked before about my Buddhist practice). Nam Myoho Renge Kyo, R x
Thank you Rhiannon, it’s good to hear from you x
Wendy, that was a tough post to read and tougher to write. I don’t comment often but do think of you and hope very much that there are definitely more options for you. Much love. X
H Wendy,. wondering how things are with you as have not had any Posts for some time now.. Sending gentle strength, hugs and healing thoughts.
Thanks Brenda for enquiring after me. I’m still here, very fatigued and struggling with steroids. Hope to do a blog update shortly. Hope this finds you well.
Thanks for your reply Wendy. I think of you often. I look forward to your update.
Yes I am well. I stopped treatment in Dec as my counts were very very low and I felt crappy. My onc was ok with this as I completed 35 of 40 treatments. Now we shall wait and see if indeed that was sufficient chemo for now.
Hi Wendy. How are you doing?