Hi Keith,
Eva here. I think that only a consultant can make the decsion on what to do about your treatment. However, my reading suggests that there are quite a few patients on less than 25mg of Revlimid and that it still can work at that level for some. I've even heard of doses as low as 5mg. Given the fact that you've been neutropenic perhaps your onc will lower the dose. I understand why you'd want a treatment holiday – again it would depend whether your myeloma starts reving up. A compromise might be a lower dose of Rev with careful and frequent monitoring. Even a rash can be a reason to lower the dose.
I'm sorry you're so neutropenic. When my hemoglobin dropped below 90g/L I found it very difficult to walk up stairs. Your neutrophil reading might be making you susceptible to infections. I understand why you are being given platelets, but I'm also wondering, would it be possible for you to have IV immunoglobulins to boost your immune response?
Best,
Eva
Hi Dai,
I forgot to mention one thing. When you're on Thal or Rev for a while, it can sometimes create a distortion in thyroid levels. Not all blood tests include TSH readings as one of the parameters, so it might be worth asking about that. I became hypothyroid, possibly as a consequence of being on Thal, and have needed some meds to regulate this.
Eva
Dear Dai,
I'm going to tell you what I might do if I were in your situation – I'm just a couple of steps behind you. I realise that everyone has a different nature and therefore different relationships with procedures and organisations.
I'd ask if there was any option of 'beefing up' the Rev, and I'd try and at least think about this now rather than later. Since every med has side effects, the extent to which you can beef something up will depend on your kidney/liver function,how neutropenic/anemic you are etc, obviously something that only a myeloma specialist can understand and advise you on.
However, if you don't ask, you may be working your way through a flow chart that the NHS has provided, one that has served you well, but that may not be exploiting every option possible. Most consultants can't question that flow chart because of their position in a hierarchy and their relationship with conformity, as well as because of funding issues. Sometimes someone with a higher 'status' has more freedom to look at different drug combos.
Anyway, I'd think about Rev with a combo of cyclophosphamide or bendamustine. Yes, it could make you very sick, but if you are the kind of patient who tends to respond to meds while you're on them, you might make a case for experimenting with very low levels of these meds to minimise symtoms. Another option for strengthening the potency of a immunomodulator like Thal or Rev, is to add an antibiotic- Clarythromycin. It has side effects of course. This antibiotic is known as 'Biaxin' overseas. Studies have been done which seem to indicate that it can make remissions on Thal and Rev last longer if it is taken at the same time. You can google these studies yourself if so inclined. It's not terribly expensive. Your consultant would have to be prepared to go outside the NHS flowchart, but I believe it has been studied in very reputable contexts. Also, sometimes even a drug like Velcade, might not work on its own, but together with Rev, because of synergy, could have an impact. Also another question: would getting some intravenous immunoglobulins strengthen your immune system, now, or in the future? And has anyone ever mentioned the idea of a reduced intensity mini-allo? Yeah, I know how dangerous they are….
You could also try and find out whether you can be on a trial for Immucin, a vaccine developed in Israel, that has very few side effects. I know that's a long shot, but why not ask whether they know when trials of that are moving beyond Israel or what it would take to make you eligible. I recognise that all my suggestions would have to be vetted by a qualified myeloma expert.
Best,
Eva
Dear Dai,
I'm so sorry about what you've been through. Sometimes we have to make very difficult decisions about how to react when our treatment in sub-optimal. When the failures are systemic ones rather than individual ones, there is even more of a dilemma. And often, we can't tell the difference between the two, because behind each promise that hasn't been kept there's an avalanche of stories about unreasonable demands being made of health professionals. And yet, systems can become more and more run down, and if people don't complain, it will just get worse. It's not all lack of money – there's bound to be mismanagement and poor decisions. It's difficult to complain when you're really ill. When I was at my lowest ebb after transplant and hooked up to three things at once I didn't drink for many hours because I couldn't lift a litre jug of water. The nurse I asked for help said I wasn't trying very hard. It turned out my lung had been punctured when the Hickmann line was put in and I was in so much pain I couldn't move( the puncture had been concealed from me). There's a lot of scope for 'misunderstandings' like that and sometimes we just have to squeal.
I am wondering whether it might be useful for you to try a three drug combo, even with something that appears to be not be particularly effective for you. The combo might work synergistically. Could you prepare a list of treatments or combos that you've heard of and ask whether any of them are on the table? Even if you're very happy with your consultant, getting a second opinion is not a vote of no confidence. It's a recognition that somewhere else something might be possible that could work for you. I have no right to say this, but maybe it's time to pull all the stops out.
Eva
Dear Jimmy,
My information is based on my reading, not on any negative experiences I've had. I've read various papers and also forums which included patients from the States. However, I think you should ask your haematologist/oncologist whether it is true that certain supplements are not a good idea with Velcade.
The supplements I've read about are green tea, alpha lipoic acid and very high concentrations of Vit C. My impression is that some patients who are using Velcade keep off these supplements for a brief time period before and after their Velcade infusion. I think it's ok for you to use my post to alert you to a possible problem, but the final decision should be made in consultation with a doctor. You could also ask a myeloma nurse specialist.
Best of luck with your treatment,
Eva
Dear Tessa,
Congratulations on your fund raising!
Myeloma UK has helped me for sure……
My email is evayouren@lineone.net
Eva
Dear Benz,
Hi – this is Eva. I live in north-east Scotland and I attend Raigmore as well as an oncology centre in London. I've also had treatment in Edinburgh in the past, but not in Aberdeen.
Best,
Eva
Dear Gill,
Thank you so much for letting us know so much about Stephen's journey. We can never understand exactly what you've gone through, but I have a great deal of respect and admiration for you both. I'm so sorry for what you are going through now. How do we keep going when the unthinkable has happened? We are all grappling with that. I hope that in time, you will be able to look back at the love you had for each other, and remember it with joy and contentment, rather than pain.
Thinking of you,
Eva
Hi Eve,
Your questions about maintenance make a lot of sense. As Helen and Dai have pointed out, in the UK these questions will be addressed via a trial which is ongoing. I have never understood why trials from other countries – if conducted with a large enough sample of patients – should not be a valid way of advancing our knowledge. Obviously there would have to be major similarities with treatments here as well as patient characteristics. Because we don't have a dozen drugs to treat myeloma with, this shouldn't be so difficult.
I'm one of these people who reads papers from other countries which summarise findings of drug trials there. I can only give you a very crude summary of some of these. I don't want to quote at length from specific studies as I doubt that this is what you are looking for. My impression is that if Revlimid is taken as maintenance after a transplant, some studies suggest that the median length of remission can be twice as long as without the maintenance. This doesn't have to apply to a specific individual – we are talking statistics here. At the same time as these results were coming out, there were also reports that it was not clear whether this gave patients a survival advantage. Having a longer remission time doesn't necessarily mean you'll live longer, because when you relapse you might be able to go on the drug and benefit from it, whereas someone who has already been on it for a long time might no longer be as responsive to it. Lately I've read at least one report that suggests a potential survival benefit to maintenance as well. Sometimes a benefit such as this takes quite a while to become manifest. There are also some disadvantages to maintenance, such as side effects and high cost.
Because I've already relapsed once and had some traumatics events associated with the relapse, perhaps I'm more likely to wish for maintenance. However if I had severe side effects, I'm not sure whether my wishes wouldn't change.
At the moment though, unless we have insurance or are in a specific arm of a trial, we are unlikely to have maintenance. I'm sure that in the future it will be different.
By the way, since my relapse I've been on Thalidomide and Dex, and am now on Thalidomide alone. It appears that I reached a good response several months back, but I've continued to be given a small dose of Thalidomide as a kind of 'consolidation' treatment. My myeloma is difficult to track as I've become an extremely low secretor. I am not on a trial, but I do have insurance. I experience some fatigue and tingling/numbness in feet/hands but because my relapse was rather overwhelming( more than 70% plasma cells in bone marrow and shattered arm), I am pleased that I'm on something. I don't know how long this will continue as it will depend on my oncologist and on the insurance company, as well as whether my side effects become impossible to ignore.
Very best,
Eva
Dear Gill,
I'm deeply sorry that this is happening: that you are being pushed to the limits of your endurance. If Stephen is no longer lucid then I can only hope that he isn't suffering.
The love that you have always felt for each other does not disappear even if someone's consciousness does. You have been there for him right through this illness and its final phase and he would have undoubtedly wanted you to take solace from that love.
Eva
Dear Gill,
It's devastating news that you've had. Your situation seems almost unendurable, and yet you have to live through it. I hope you can find the strength to say the things that you feel need to be said and that Stephen's suffering will be alleviated in every possible way.
Thinking of you,
Eva
Dear Keith,
Am delighted for you. I think you're right in being concerned about QOL issues and in hoping to reduce the dex. I can't imagine a diet without a grain of sugar! Are there any other interventions that can ameliorate the diabetes? Such as meds or exercise? I also wonder whether any other dietary interventions, other than stopping to consume sugar, can make a difference.
Good luck,
Eva
Dear Maxine,
I'm sorry about what you're all going through. As time goes by, you will know more about your sister's illness – about what stage it's at and what treatments have been recommended for her.
I'm not an expert on this, but I imagine that most myeloma treatments are not very compatible with pregnancy. The good news is that she's due to give birth soon, and that often it's ok to delay treatment. Please let us know when you have a fuller picture.
In the meantime, I'm sure she'll have your loving support. I think I remember reading about a case in the US in which a pregnant woman was dx with mm. I believe she went on to see the child flourish and that she survived for a long time.
Best,
Eva
Dear Tina,
It's difficult to isolate what's causing what, but I think that morphine can create nausea. If your doctor agrees, then you might benefit from an anti-nausea pill. You've probably already been prescribed some such as domperidone etc when you were on chemo.
Hope you will feel stronger now,
Eva
Dear Dai,
I'm so sorry you've been through this. I think that most patients are too overwhelmed to say anything.
Similar things have happened to me in Edinburgh after transplant and at Raigmore( Inverness) after my arm broke. However I did also experience some fine care as well. Sometimes I wonder whether there is confusion about who is responsible for what. It is only when we notify the hospital about what happened that there's a chance of them confronting the problem. I'm ashamed to say that after my arm shattered and I spent nine days in a ward in the hospital at at Inverness, I did not report some things I saw that were really really off. Instead, it felt as if I was imploding and I asked to see a psychiatric nurse and felt very low. I had lost my fighting spirit; I hope that in the future I will be braver.
Dai, I hope your symptoms diminish and that you respond to the Rev.
Best,
Eva
