Bridget was warm and caring and selfless. We will miss her.
Eva
Dear Keith,
I've returned to an earlier treatment. I began CDT for induction in May 2008 like most patients at the time. I then had a transplant( autologous) near the end of 2008. After relapsing sometime between two and two and a half years after transplant, I went back on Thal and Dex without the Cyclophosphamide. It's been a long hard road with problems caused by my reaction to Dex withdrawal each cycle. I've been taken off Dex for the last four months and have remained just on Thalidomide.
My relapse was quite aggressive( 70 % plasma cells in bone marow and broken humerus) and we took a gamble by going back to earlier treatment. After nine months my M spike disappeared, but I needed additional tests to confirm my meds were working. My myeloma is a difficult one to track now as I've become a very low secretor. However, a bone marrow biopsy suggested less than 5% plasma cells and my freelites went back into normal range, so it appears I was doing ok. Even if I were to relapse again this week, I've had a year on the same treatment as before, and it seems to have worked.
I've read quite a number of case histories from the States where patients have been retreated with Velcade or Revlimid. It seems to have a chance of working if you are not on the treatment while you progress. I've even read of cases in which a patient was receiving a very low dose of something, began to relapse, then had the same med at a higher dose together with dex and managed to get a response again. Some of the latest trials are looking at ways of sensitizing patients to Velcade again, for example, by adding another agent.
Best,
Eva
Hi Ian,
Sorry about the mini-allo. I'm sure it's a real possibility that the Velcade will do well again. Let us know how you're doing.
Best,
Eva
Hi David,
In Scotland, the rules are that Revlimid is available after the second relapse. However, if someone couldn't tolerate Velcade, then I guess that the doc would try to organise special provision. Maintenance Rev is not yet covered by the MHS.
What's so odd is that it is claimed that we haven't had time to do enough studies or for the 'studies' to mature. That might be the case in this country, but there are multiple studies from reputable institutions from all over the world. My impression is that NICE seems to want the studies to be carried out on home territory. Is this a way of stalling for time and thereby lowering costs, or is it an attempt to protect the patient?
There is a history also for research scientists to repeat studies( with perhaps the tiniest variation) rather than accepting work done overseas. Given that myeloma is not a common cancer, this doesn't serve us well. I'm not an expert on this, but I believe it even applies to areas such as vivisection- animal experiments – and I have heard that results that the scientific community were well aware of have have been duplicated many times with new tests in new countries. How you interpret this depends on how cynical you are.
Now, getting back to Revlimid, it's still contentious whether it's used as maintenance, because even although a number of studies have proved that it inreases length of remission after transplant, it's not clear whether there's an overall survival benefit. As for treatment not as maintenance but as a single therapy or together with other meds, it's actually quite a bit more expensive than Thal, though much more potent. I think it's a frontline treatment in some places. I haven't had any yet, so I can't comment on what it was like.
Best,
Eva
Dear Jean,
This is going to sound ridiculous, but it depends on what Frank means when he says that 'aliens have taken over his body.' Not everyone is comfortable with discussing every nuance of their responses to a drug regimen. Some people even find it difficult to admitting to having ongoing pain. Once you factor nausea, fatigue, dizziness, hot flushes and even steroid induced anxiety or hyperactivity into the equation, how do you talk about it?
And yet, in the end, you must talk about it. Our doctors are trying to find a balance between exposing us to damaging treatments which may help
us and moving us on to another set of meds.
Those of us who have had myeloma for a while are probably aware that at the moment we have a finite range of treatments in existence, and certainly a finite number that the NHS has approved. This means that if we race through all the treatments too fast, we'll get to a stage where there's nothing left for us to take. Our bodies will partly determine how fast this process happens, as each treatment will either suppress the myeloma for a time or it won't, and when a medication stops working we move on to another one. Another limiting factor is side-effects. If they are too awful or dangerous, then together with our doctors, we might decide to lower the dose of a particular therapy, or abandon it altogether.
I didn't understand this when I started CDT, soon after I was diagnosed in 2008. I asked my oncologist what the side effects would be, and I was given a very vague answer: you may have very few side-effects, some people continue working while on CDT- if you have any problems contact us. This was not a good response for someone like me. I know that my doctor didn't want to 'feed' a list of side effects into my head in case I then waited for them and every twinge was part of some prediction coming true. However, once I was hit by the side effects, I assumed that I was one of these people who couldn't tolerate treatments and this was a frightening prospect for me. It really amplified my stress. Looking back on it, I now know that what I went through was well withing the range of what others experience. I remember my husband ringing Ellen the myeloma nurse, to find out whether my symptoms were off the wall and whether I could continue on the meds.
I'll give you an idea of my symptoms on CDT: I was very fatigued and felt some nausea from the Cyclophosphamide which was controlled by drugs, I was dizzy from the Thalidomide, I felt oddly hyper from the Dexamthasone and also hungry, and when the dex was stopped each cycle, I found it difficult to walk and do stuff until my body adjusted each time. I chose to lay in bed for a number of hours a day and then I'd get up to cook a meal and to exercise. My quality of life was still good as I could read in bed and I love reading. I had no way of separating out what drug was causing what because no-one had told me about potential side effects. Surely if it was 'normal', my doctor would have mentioned it? After my second course of CDT, I was so dizzy, I fell over in the kitchen a couple of times and wasn't sure where I might have lost consciousness for a split second.
After four years of treatment and contact with myeloma friends and reading lots of posts, I know now that many of my symptoms were pretty common. When I chose to tell my doctor about them, he immediately took me off all treatment for two weeks, and then re-introduced each med for a week at a time to try and find out what was causing what. This was a very scientifically rigorous approach, but my stress was going through the roof as I was worried we weren't tough enough on the myeloma. It was summer, my doctor and his colleague went off for the summer hols soon after. I couldn't discuss what drug was causing what. A replacement was confused and assumed that I had finished my treatment after just two cycles and one very aborted cycle. I was told I could stop treatment and proceed to transplant. My paraproteins were going down, and at one stage they had reached zero and then had grown again. I complained and asked for another cycle. I got it, and then the third doctor was gone and I faced a locum who was struggling to read my notes as he'd clearly had no time to prepare for his consultation with me. The locum stressed that a transplant was likely to help me, so I agreed.
Even though I was told that my results were very good, I have always regretted not consolidating my response with another course of CDT, and perhaps even waiting to see whether I might continue for a while in remission on CDT, before having a transplant.
Frank's pins and needles could very well be neuropathy. If that is caused by Thalidomide, it can sometimes be permanent. It is important to tell the onc in case the dose should be lowered. I am now getting the beginnings of neuropathy, as I've been on Thalidomide again after my relapse. Again, we all walk a fine line between getting our treatment adjusted in a sensible way and between being suddenly taken off a treatment, and given the next one. I will talk about my neuropathy at my next appointment, but I will stress that it is well within what I can cope with and that I'm delighted that I've responded to Thalidomide again.
I hope Frank does not suffer too much and that he can have some quality of life whatever treatment he's on.
Best,
Eva
Dear Andy,
I'm sorry about the stress you must be going through. I have read about cases in which someone has failed a transplant but has then gone on to respond well to other treatments. I didn't know that when I had my transplant and it made me worry too much about the efficacy of the procedure. Of course, it's disappointing because there is such a build-up to the transplant with all the steps involved in preparing for it.
Very best,
Eva
Hi Eve,
I spoke to Sue yesterday. She'd phoned my place the day before when I was out and told my husband that her platelets had increased by four all on their own! We were delighted with that and saw it as evidence of engraftment gathering pace.
Sue is at home and still feeling very exhausted and experiencing some nausea. I think she's very relieved about the platelets.
Wishing Slim the best and hoping he recovers from all the side-effects of the transplant. Please keep us posted.
Eva
Hi – I've been on CDT in the past, and had problems with dex withdrawal. It's because the adrenal gland closes down and needs to start working again.
My onc suggested that I could taper the dex off more gradually – in other words the last day's dose could be divided over a couple or even three days to make the landing a bit gentler.
Another option(if your consultant agrees), might be to try a slightly lower dose of dex and check if the treatment is still successful.
Best,
Eva
Dear Dai,
Thank you, that's exactly what we were looking for! I've put a bit of muscle into researching this issue on the Net, and haven't found anything half as appropriate. I haven't spoken to Sue for a couple of days so I don't know how she is, but I believe that she might have be taken to and fro from the hospital and home, and that would be exhausting….
A quick update on me… I had a serious relapse a bit over 2 years after a transplant. We tried Thal and Dex for eight months. My myeloma has evolved into( almost) a non-secretory one. I responded slowly but surely, eventually appearing to reach a CR or something close to it. I had a lot of trouble with dex withdrawal symptoms each cycle and even had serious myopathy at one stage. I was taken off dex and have continued on Thal for another four months. It appears I'm still ok. I'm possibly eligible for another transplant so the issue discussed in the article may be relevant to me too. I'm waiting to see what happens and don't feel like galloping towards another transplant. I'm aware of the tension you must be experiencing and I hope that the Revlimid is good for you.
Best and thanks again,
Eva
Dear Michelle,
Thinking of you at this time,
Eva
Dear Gail,
I'm not familiar with Howard's treatment history. Could his restlessness at night be due to steroids? Might his confusion be caused by pain-killers? Is it time for him to use a sleeping pill to get a good night's rest?
What do his doctors think?
Eva
I hope the transplant will go as smoothly as possible….
Very best,
Eva
Dear Mari,
First of all, best of luck to both you and Steven.
I have a question for you as I am possibly in a similar situation to Steve. I will have to decide whether to consider going for another transplant, or trying to stick with some novel agents first. I'm assuming that it might not be worth going for another transplant now, as I wouldn't expect a remission even as long as my period of convalesence.
Unless…… Do you have any way of finding out what the new protocol might be and how/why that might improve results?
Eva
Dear Tina,
You will be energised when you are back on the dex. However, as you go off it, it will take a while for your adrenal gland to start working and so you might experience a 'low.'
You are likely to feel hungry when on the dex and some people have trouble falling asleep. The dex does help with bone pain and it makes most treatments more likely to work. Possibly you will add weight around the abdomen and on your face.
Eva
Deeply deeply sorry,
Eva
