Staying Stable

Sorry it’s been a while, though nothing much of significance has happened. After my DLI I became 100% donor cells. My disease levels (kappa in the 20s) are just above normal, and have been stable for some time and for those who understand, my kappa/lambda ratio is about normal too – which it hasn’t been for years. I am still on Revlimid, but they will try reducing the dose from 25mg to 15mg after this cycle. My Leicester consultant doesn’t want me to have another DLI as it’s not necessary atm and she’s worried about graft versus host disease which can be nasty. She’d also like me to be fit in case they want to try me on any new treatment in the future.

The downside has been side effects of coming off steroids, which, along with the Revlimid, have knocked me sideways. There has been some disagreement over whether I should be treated with hydrocortisone, but after another test, but the endochronologist at N’ton said I’d only need extra if I was under stress – ie have an infection. Whether this is ok I don’t know, but I am still very tired and my joints ache badly. I guess my cortisol levels will slowly rise back to near normal – let’s just hope it doesn’t take too long.

So – on balance the important thing – my disease levels – are most important, and as everyone on treatment knows, I just have to put up with the effects of treatment to keep them there. I’m trying to get exercise as much as possible, but to rest when I need to.

My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have :-)

Spring Update

I hope you all had a good Xmas. Ours was quiet. My daughter’s partner’s mother, who was a good friend, died the Sunday before, from lung cancer and brain tumours. She survived much longer than predicted and we had numerous excursions to the hospital together, and I would call in after my appointments. She died peacefully at home with her two adult children with her. She refused to have a funeral or wake, so the family will scatter her ashes up north where she grew up.

Not really had much of medical importance to report on recently, but I’ll be off to my consultant tomorrow, so I’ll update on that if anything significant happens.

I am still on Revlimid (top dose 25mg) and my disease levels are still low (kappa light chains hover around 40ish). I had my first infusion of donor cells to ‘top me up’ just before Xmas. It was a tiny amount and I don’t seem to have had any graft versus host disease, although it’s a bit difficult to know as my digestive problems have worsened and my mouth is very sore, but that could be due to my other treatment.

I’ll be having a test in a few weeks to see if my percentage of donor cells has risen and then they will decide if I need another infusion, which will be bigger.

It was also decided to take me off steroids, which in the long term will be great, but I have been reducing pretty quickly and am really struggling with massive fatigue, aching and low moods. If things get too bad I’ll ask to do the last reductions over a longer period of time.

It will be interesting to see how I am on just the Revlimid and the associated meds like aciclovir etc. I do have bad sweating sometimes, especially at night, which I think is the Revlimid, and sometimes I am having the runs badly.

I also saw the immunologist at Leicester – poor guy is completely overworked, but he was interesting and gave me more background on my immune system. He’s keeping me on the immunoglobulin IV for the moment and I see him again in July.

I’ve been really plagued with a dry and painful mouth and am trying various things from the chemist, but the last stuff irritated my throat. It is surprising how annoying it is. I also get catarrh/rhinitis/nasal drip etc, but am used to it really.

Apologies if this sounds a bit whingy. Coming off steroids does make me low and irritable, but I’m trying to just remind myself it’s the drugs!

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!

IMG_0142

 

 

 

 

 

 

 

 

 

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

 

Back Onto Treatment

Just a quick update. Unfortunately when I saw my consultant last week, my levels, which were 2 months old, had risen (Kappa 465). My ratio was stupidly high as my lambdas were, as always, very low, but we don’t take so much notice of them.

My Leicester consultant has passed me back to Angela, my Northampton one, while she handles the next phase of treatment. Basically this involves me going back on Revlimid and Dex (steroids) to try and get my levels down. Then, if that works, I will go back to Leicester to have one or more donor plasma injections. I wasn’t 100% donor cells, which can be more protective, so this could ‘bump’ me up.

There are possible issues in that they could cause graft versus host disease, although that can also fight the disease! Bit of a balance there!

I started the new regime yesterday – 10 mg of Revlimid once a day for 21 days and a week rest. 40mg dex once a week. Already fingers are swelling up, but on the other hand I feel fairly active! Expecting the usual puffy face. I tolerated this regime well last time, and the Revlimid is at a low dose for the moment (I was on 25 last time). However, having had the transplant, the side effects may be different.

Bit of a blow, but having to just get on with it. It’s complicated by the fact that the Cancer Fund, which deals with rarer conditions and drugs, is being cut for the second time. As I’m on Revlimid, which is being cut for some people, I should continue to get it, but if it doesn’t work, then one of the other possible drugs won’t be available. There are other drugs, but hopefully the Revlimid will work. I have been on it before, and came out of remission after about 18 months or so, so hopefully I haven’t built up a resistance to it.

I’m also having a colonoscopy soon to check out my polyps and also to make sure I haven’t got GVHD in my bowels, as I’ve been having some digestive issues. Can’t wait!!

Not much else to report. I’ll try to post a bit more regularly on how it’s going.

Happy Birthday dear stem cells!

I know that I probably do this post every year, but every year I am even more pleased to reach another ‘stem cell’ birthday.

4 years ago today, I was given back my stem cells at the Marsden in Surrey. I remember it far too well, especially the fact I promptly threw up as they pumped them back in to me! But despite the fact that it was a horrible experience, and 6 months of my life that I would happily forget, I can’t forget the fact that it has put me into a remission that has lasted far longer than I could have ever asked for.

I was talking about my remission just a couple of days ago with another myeloma friend. She had her transplant a couple of years after me and is slowly seeing her figures creeping upwards. That time that none of us want to hear about. But, and this will sound strange to anyone who hasn’t gone through treatment, she can’t wait to start again because it means she will get to have revlimid as a maintenance therapy afterwards. And I totally get that. I totally believe that my revlimid is what has kept me in remission for the last four years. It is why I used to get nervous if they ever talked about stopping it. Now it all may be in my head. But I don’t think so. And even if it is, who cares if it keeps me positive :-)

I also reached the 6 year marker of diagnosis on Friday….I can’t believe it really. I continue to feel very blessed that I am doing so well and that I have had access to the right treatment for me….and that my fears all of those years ago have been proven wrong. Long may it last.

Baby Talk Part One

umbilical-cord

 

 

 

 

 

 

I haven’t updated my blog for a while as I dont know where to begin as usual. So much has happened since my post about my second stem cell transplant that I’ve not been able to step off the emotional (more so than the physical at the moment) roller coaster that is living with myeloma for a break.  I had hoped for a few months of not having to think so much about myeloma and the course of my disease, just a bit of time off for good behaviour!  Four months on and I have pretty much recovered from the physical effects of the transplant. I have a spotty face, dry eyes, occasional bouts of diarrhoea and usually wake up feeling like I have a hangover from hell!  I’ve been on two fantastic and completely opposite holidays, the first in Egypt exploring the underwater wonders of the Red Sea and then a few days later to Iceland exploring the land of ice and fire.

IMG_1805                   P1030326

The reason why I crammed these holidays in to such a short space of time will become apparent later on in this post.  That is the good news, the bad news is that a couple of months ago I found out that my stem cell transplant hasn’t had much effect on my light chains so it is unlikely that I’ll have much more time free of treatment.

The  further blow is that the boss here at the Manchester Royal Infirmary thinks I will be resistant to the next line of treatment, Revlimid, as it was one of several drugs in the VDR Pace regime that I had before my transplant to which I also didn’t respond. After Revlimid there is only one further new line of treatment currently available on the NHS called Pomalidamide and the boss didn’t seem to have a good view of that either. I asked her how long she thought I’d got, the answer was one to one and half years. I was completely shocked on two levels…….that my stem cell transplant hadn’t worked and that my disease may be resistant/refractory to Revlimid which I was saving for a rainy day. The timescale for living was sharply brought into focus and my awareness of my mortality became very real again in a flash. I am probably more conscious of this than most people I know because of living with an incurable life shortening disease where the chances of surviving more than 5 years from diagnosis are only 45% but even knowing this I have sometimes felt or even assumed somehow that I am going to live much longer. The failing aggressive treatments and multiple relapses have now provided a much needed reality check! Hence the holidays to Egypt and Iceland.

The purpose of the meeting with the boss whom I don’t normally see was to discuss a donor transplant, technically called an allogeneic transplant. This has been lurking in the background to my first and second transplants ie an auto followed by a donor transplant, usually within 4 to 6 months of the auto. Because it is tandem to the auto, it is called a reduced intensity allogeneic transplant (a RIC allo for short). The idea is that you get the high dose of Melphalan that I described in my post on the auto transplant and then your own stem cells back to rescue your bone marrow. This hopefully keeps the myeloma at bay whilst you have the donor transplant a few months later where the chemo given is generally less intense and designed to dampen down your immune system so the new donor cells can engraft and hopefully recognise the myeloma cells as foreign and attack them.

A RIC allo was suggested by the boss after my first transplant in 2011, it being offered to younger high risk patients like me as it may give a longer remission and in a small number of cases be potentially curative. Maybe about 10% of patients live for 10 years or more after an allogeneic transplant. At present in the myeloma field there is no other treatment that can be potentially curative in this way. Sounds great, why wouldn’t I have it? Because on the downside it carries a significant risk of transplant related mortality and chronic graft versus host disease which could severely affect my quality of life. The generally quoted figures for transplant related mortality for an auto are around 2/3 %, for a RIC allo it is more like 20% depending on exactly what type are having.  I agonised over the decision the first time around, should I take my chances and see how long I got from my auto, some people get years, or should I take the risk and go for it as it is best performed upon first response?  I bravely or foolishly decided to go for it only to later find out that there was only a 7/10 matched unrelated donor (my brother and sister weren’t a match either) so the RIC allo couldn’t go ahead and the plan was shelved until, if and when I had my second stem cell transplant in the hope that a suitable donor might have come on the register by then.

When I relapsed, the prospects seemed slightly better as I was told that there was a 9/10 match which might be a possibility.  My approach was to take it one step at a time, get through my treatment and my second stem cell transplant and then have another discussion with the boss. I did have a preliminary discussion with her before I started VDR Pace and she told me that upon further analysis the 9/10 match wasn’t ideal as there was a weight issue ie the donor weighed a lot less than me so I might not get enough stem cells for my body weight from her. I suggested I go on a diet but the boss didn’t think that was a good idea when recovering from my transplant! In any event there was a mismatch at an important level which meant there was a much greater risk of mortality from the transplant.  She suggested I might have a cord blood transplant as an alternative.

This is where umbilical cord blood is used as a source of donor stem cells taken from babies whose mothers who have kindly agreed to donate their baby’s umbilical cord. It is then typed, stored in a cord bank and registered with the Anthony Nolan Trust. There is less chance of a mismatch because the stem cells are immunologically naive. As an adult I would need two cords.

It has rarely been done in myeloma patients and there is very little to go on in terms of its effect on disease control in myeloma patients. The further disadvantage is that there is no possibility of a donor lymphocyte top up which is possible in the usual type of donor transplant to try and stimulate graft versus myeloma effect if a patient is showing signs of disease progression. At one point the boss said it would be experimental and she wasn’t sure that she would be willing to do it. We left it that I would get through my autologous stem cell transplant and decide after that and she would contact a Haematology boss at the City Hospital, Nottingham, a renowned transplant centre, whom she thought might have done some for myeloma. I also asked her to find out more about my tissue type as I was thinking about starting a more personalised Anthony Nolan campaign to try and find a match with the aim of getting more recruits to the register and wondered what my genetic background might be.

She found out that there had been two cord blood transplants carried out by the boss in Nottingham for myeloma patients, one was doing very well and the other not so well, so not very helpful but both were still alive! I did a trawl of the internet and found a study from France on the use of cord blood transplants in 17 relapsed myeloma patients which seemed to demonstrate a graft v myeloma effect and similar survival stats to RIC allo studies which she found encouraging. On that basis she said she would be prepared to do it. She also had a response from the tissue typing people at Anthony Nolan about my tissue type :-

“For Wendy’s HLA type, she has one half of her type which has been seen quite a lot in European populations – mainly from Eastern Europe, but it’s most common in Croatia, Poland& France (about 6-11%).

The other half of her type has never been reported in any known populations. There is something very similar (A antigen mismatched) in a few European populations (especially Germany/Netherlands).

New haplotypes arise by genetic crossing over, and it isn’t too unusual for HLA-A to be crossed over when a new embryo is created. My best guess is that somewhere in Wendy’s ancestry (and it’s not possible to know at which point) a new haplotype was created in this way, and that the descendents with this haplotype have not spread far enough yet to make it common. This is why it’s fairly easy for us to find a 9/10 match, but not a 10/10. Wendy’s HLA antigens are not desperately uncommon in themselves, it’s just that because the genes in the HLA complex are very tightly linked together, this particular combination aren’t usually found together.

Hope its not too confusing”

Wow, I’m annoyingly rare, a new haplotype, is half of me alien? A lot of this is way over my head but I finally knew there was no point in clinging on to the hope that if I waited a bit longer I might get a 10/10 match or even a suitable 9/10 match as there would always be a mismatch at a major level. So before I had my autologous transplant I knew my options afterwards were either going to be the experimental cord blood transplant or see how long I got from my second transplant and maybe have Revlimid maintenance. I tried to put this out of my head until I had the further meeting with the boss about two months after the transplant and concentrated on getting through it and living day to day.  If I thought about it too much it would spoil my determination to live in the present. And that is what I have to do. That is enough to take in in one post, Part 2 coming soon!

POST 37: Don’t read this post if you’re squeamish!!!

I’m so lucky that I have now been in remission for 3.5 years, a timescale that I never imagined when I was first diagnosed, and certainly didn’t expect even after my Stem Cell Transplant (SCT) that I had in 2011. It is 5.5 years since I was diagnosed.

I honestly believe that part of why I have done so well since my transplant is because of maintenance therapy. I have been on a drug called revlimid since October 2011 as part of the Myeloma XI trial that I am on. Revlimid isn’t available to a lot of patients like this as you have to be on a trial to get it…it costs £000’s a month! Luckily I got randomised to it due to the trial, and the drugs company pays for me to have it until the day I relapse. Long may that be!

Revlimid is a type of chemo that is in tablet form. I take one little tablet every day for two weeks and then have two weeks off. When I had it for 3 weeks, it used to lower my neutrophils, which meant that my immune system was very poor and I was regularly ill. So over the past couple of years especially, my health has been fairly predictable and fairly constant. I am not ill so regularly as I used to be, and whilst I tend to take longer to recover when I am ill, I have generally been pretty healthy!

Unfortunately, just before Christmas, this all seemed to change. I was finding that I was getting cramping and needing the toilet more than before. (I told you not to read this if you were squeamish!). As the weeks went on, it seemed to get worse, and it was really affecting my life. I particularly remember the time on the train after a nice day out in London, where poor Nick and the kids had to sit on a platform halfway home, while I located the nearest toilet for over half an hour!

Eventually I realised that perhaps I needed to make it clear to the Marsden exactly what was going on…and needed to bury my embarrassment. It was far worse having to deal with these unexpected and frankly mortifying experiences….and there was a chance that it could happen at an even worse time! So I told my consultant, and they referred me for something called a SeHCat scan that monitors bowel movements. They were so good at taking it seriously, partially because they know that revlimid can cause an issue called ‘Bile Malabsorption’ where your bile isn’t reabsorbed properly, and partially because of my mum having had bowel cancer 4 years ago.

As is always the case, it seemed to get better after I’d been for the scan and so I decided I was going to get told that I was fine. In the meantime a good friend of mine who is at a similar stage post transplant, and also on revlimid, told me that they had suffered similarly and that there was medications I could go on. Anyway the long and short of it, is that I have now been diagnosed with Bile Malabsorption. Apparently people who have this, are often mistaken for having IBS and it is much more common than you know!

I’m pleased to report that since I started on the treatment (lots of huge pills!), I seem to be significantly better and the tablets are definitely doing what they’re supposed to be doing. Which is a good sign that it is nothing more sinister.

I know it’s an odd post to publicise and I did think twice about it….. it’s an embarrassing topic really. But I know that I just needed that push to get it looked at and now it has changed my life. I don’t have to worry about the nearest toilet anymore, and I know that it is controllable. The day may come where I have to cut fat out of my diet (might not be a bad thing!), but for now, that wouldn’t be enough to stop me needing the tablets and so I can just rely on them. So I thought that it might help someone else who is reading this blog with myeloma…..or for that matter, anyone else who is reading it who has general cramping and bowel issues.

40 Challenges B440 update!

Just a couple of sentences to say that I only need to complete 2 more challenges now! One will be my party on the 24th, and I’m also hoping to complete the; book challenge, necklace challenge and the birthday card challenge!

If any businesses out there were wanting to sponsor that challenge, please don’t feel that you can’t know that I’ve reached 40….I would love to keep adding to that total. And if you just want to make a little donation to help, the details are below!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £10′ if you want to donate £10

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!

Zombiecocktail

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!

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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.

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The Drug Regime

I have been on my new treatment for 12 days now. Considering I have been through it all before, twice before, it is taking some getting used to. They come with endless side effects. It is a list that is long and is literally a pain in my bum. Practically however, taking the drugs, sorting through the drugs, swallowing them and remembering to take them is a chore. It’s a regime, it’s a 24 hour drug taking regime. If I were lighter, I would rattle. I am not light, so I do not rattle. My overflowing drugs drawer does that for me. It is overflowing into my make up drawer and that drawer is already full. The stuff in the drawers isn’t even the drugs I have to take for the next week, for they are in my handy dosette box. It would be impossible to remember to take everything without the handy organiser. That’s a tip from me to you. Invest.

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I have yet to work out how many drugs I take every day. I am doing that as I type. I keep throwing numbers around, 15, 20, 30. You get the gist. It is a lot. This blog, will act as a useful exercise, if only so I can accurately boast about how many pills I have to take, when most people opt to take vitamins. Anybody who has myeloma, or any form of cancer for that matter, will not be surprised by the volume of drugs. Correction, free drugs. I know I must be used to the number of pills, by the volume I can fit into my mouth and swallow in one go. You have to give it to myeloma, it has given me one hell of a gag reflex.

As My Myeloma has given me some delightful feelings in my spine, I do not only take drugs to combat the disease. I also get to take a daily cocktail to manage my pain. Unfortunately, we are not quite at the point where that pain is managed. That will come. In the meantime, I am on four different types of medication, excluding the bone juice, which allow me to get out of bed. Currently, because I have decided to up my MST dose, I am taking more pills as the pharmacy decided to give me 10mg tablets instead of 30mg. They will receive a request the next time they dispense to be certain.

My four week treatment cycle involves three weeks on Revlimid, and four days (bar cycle one when it goes up to eight) days of steroids. So I can take these, I then have to take six other types of medication to protect my body from bugs and other fun things.

The Sharps Box is also back. It’s still yellow.

Oh, and as I still experience the side effects from the menopause, I continue to have HRT seep into my skin from a semi permanent patch on my bottom.

The contents of daily dosette box then, is currently like this (italics equals pain):

MORNING
1 x Aciclovir 200mg
1 x Ranitidine 150mg
1 x Allopurinol 300mg
2 x Docusate Sodium 10mg