Dear Tina,
I think that looking back on it, I wasn't told enough about what dex withdrawal can do to you. I was afraid when I felt very sluggish after I went off dex each time. Because my onc had seemed to imply that really I might have no symptoms or side effects from CDT, I thought something was terribly wrong with me when I felt bad. I've now talked to a number of people on CDT, and I've realised there can be side-effects.
Dex can make you feel a bit 'wired' for a few days. When you go off it, you might feel rather tired as your adrenal gland has to start working again. If it's really bad, the dose of dex might have to be adjusted. There has been one overseas study in which patients were given either 20mg or 40mg of dex. The arm of the study with 20mg had a better survival rate, so sometimes, less is better. It's whatever gets the results without too many side-effects. I remember that at one stage I passed out briefly when I was on the max dose of dex. I was also a bit dizzy from the Thal though I enjoyed its sedative properties. If you are on Dex for a long time, then watch what you eat. The last time I was on dex was for a period of nine months. I was so so ravenous that I ate more than I should have. I regret that now as I'm overweight for the first time in my life. I can't fit into my clothes and losing weight seems unusually difficult even when I eat very little. Perhaps exercise is the key.
I hope you will share any side-effects if you experience any, rather than thinking you are weird or wimpy.
Best,
Eva
Dear Sally,
Hi – this is Eva. I was a similar age to you when diagnosed. I've also relapsed and it was a shock at first, especially as I had over 70% plasma cells in the bone marrow and my arm broke. It was also more difficult to monitor my disease as I stopped secreting much paraprotein, so I could have a very low reading, and yet be seriously ill.
The good news is that I've responded to treatment. And yes, I can't walk as fast as I used to. Just before I relapsed I was able to jog every day but I couldn't run at full speed. Now I'm on Thalidomide and I can walk but my heart pounds and I'm a bit dizzy. When I'm on dex, I'm quite disabled when I go through the dex withdrawal. I haven't tried Velcade yet. I really have had to re-invent myself – to develop a new identity. It's been very difficult as I was always used to working as a teacher and earning my own income. I've found that now I can be a photographer, an artist, and a cook. I can also read a lot. I've had to really push myself to develop an artistic side but it's been worth it as it can be very engrossing to be working on a new painting. I still grieve for the old me though. The worst time is when you wake up and realise that the person you were in your dreams is no longer there. I think it's really important to do things you couldn't do before as a kind of 'compensation'.
Good luck,
Eva
Hi- this is Eva. I had very serious diarrhea after my transplant – to such an extent that I came home wearing a nappy. I was on Loperamide Hydrochloride 2mg capsules several times a day. I think that in time my system recovered enough to be able to fight the side effects. I found eating difficult and of course, had to follow a neutropenic diet. To be honest, I don't recall much contact with the hospital and I was too ill to make it to the local doctor's! I was told I could phone the ward I stayed in if I needed additional meds or had a high temperature. Perhaps you need to be on a certain antibiotic? The ward doctors that looked after you might have some ideas on that one…..Slowly, slowly I began to eat and to walk a little. What was most strange was that for a while I couldn't take in anything I read, so it was a big milestone when I read several pages and knew what they were about.
Best of luck,
Eva
Hi – this is Eva. I don't go on Facebook but please send Bridget my love.
Dear Mavis,
Thinking of you.
Warmest wishes,
Eva
Dear Jean,
Hi – this is Eva. I've written about this recently under another heading but you may not find it….
I've had exactly the same problem as Frank. 'Normal' neutrophils range from 2.0 to 7.0. This is an even more important reading than our level of white cells, as it's meant to be a 'truer' indicator of whether we can mount an immune response to a problem or not….
As a result of about ten months on Thaildomide, my neutrophils started dipping to around 1.2 or 1.3. This was not good, but I was ok. I was told not to worry. Eventually everyone around me was succumbing to a virus/flu type thing. I was surprised I didn't get it. Then I sat in a small car with the windows up with someone who, I realised retrospectively, was about to get this illness and therefore in its most infectious phase. I got ill. I was out of action for a week. I wasn't dangerously ill and didn't seem worse than other 'healthy' people who had the same virus. However, my neutrophils dropped to 0.7. My consultant said I had to be off the myeloma treatment immediately and I had to begin a course of antibiotics. Because I live in a remote area, I has previously told to keep one course of ciprofloxacin and one course of augmentin in the house. If I got a bug, I could ring the consultant, and if it was late at night or on a Sunday, I might be instructed to begin one of these antibiotics without even seeing the local GP. And that's what happened. I think the antibiotic was to try and avoid me catching something nasty like pneumonia while my system was battling a flu. It was explained to me that if I had a bacterial infection my neutrophils might rise and if I had a virus they might drop. Hence the rather bad reading of 0.7.
When I contacted my local doctor, he almost insisted I go to hospital and stay there for monitoring. I didn't go. A friend who also has myeloma had a virus in the same week and caught c-difficile – a bug that's quite resistant – in hospital.
So, it's a difficult decision for you and Frank. My neutrophils have gone up to 1.3 after a ten day break in myeloma treatment, so I can start it again. Perhaps your consultant will guide you. Ask if you should have some antibiotics with you in case you develop a fever. Of course, you can't take them without asking a doctor. Can you be in email contact with an assistant to your consultant perhaps? A blood test can also be done in your local surgery and sent off to the hospital. Results might be available within 48 hours if it's important. For quite a while I was going to public places with neutrophils of 1.2, but once I got the flu, my impression is that I was in greater danger than an average person and needed close minitoring and a course of antibiotics. Only you know if you can get that level of attention in Spain if anything happens. If the neutrophils go anywhere near 0.5, most doctors would want to keep a very close eye on someone. Remember too, that dex can mask some symptoms of infections. Something to ask the doc about.
Best,
Eva
Dear Mari,
Do you have any idea what the age cut-off is for a mini-allo?
I thought it might be 50?
I'm asking because I might wish to raise the issue with my consultant. I'd need a donor match as I'm an only child. I'm worried that by the time it's recognised I need an allo I'll be too old. I'm still responding to other treatments. My impression is that if you are about forty you might get an allo at the beginning. If you're approaching fifty my impression is they see whether you've still got responses to other treatments. If you have any info on this please let me know.
Very best to you both,
Eva
Hi everybody,
Maybe there is one area where we can express our choice.
Outcomes of any illness are difficult to predict: even a flu or cold is still a mystery. And yet myeloma is supposed to be an umbrella for a huge number of genetic changes in our plasma cells and environment of our bone marrow. We have barely begun to scratch the surface of the knowledge that will be there in the future. A transplant can give someone years of remission or it can make someone worse! Patients with one kind of translocation or deletion can benefit most from Velcade early on in the treatment cycle; others with a particular deletion( 17p) are supposed to live shorter if they get lots of Thalidomide! Mini-allos are available for some older patients overseas, but the cut-off here is generally a few years earlier – even if we climb mountains, run marathons, have no co-morbidities and have the body of someone much younger. I have read papers signed by experts ( some of whom are in the UK)verifying that MM consultants here are doing research just like everywhere else. And yet, almost no effort seems to go into determining what our gene testing shows.It's an early and imprecise Science, and maybe money stops us being tested in this way. Though I can assure you that trials conducted in London seem to have begun collating such info.The NHS is onto it, but it will be a long time, I think, before it affects treatment decisions.
So what can we do?
Well first of all we must try and become the best version of the person we are. Our MM consultants must feel quite conflicted at times. If we are the kind of person that wants them to decide on our part what is best( and after all they will always know more than us and they understand the budgetary constraints, too), then this may be the healthiest option for us. We can show good grace towards our doctors and nurses when treatment decisions fail and work with them on these challenges, by displaying positivity and faith.
On the other hand, we may be the kind of person, who for the sake of 'self-determination' and curiousity, has opened certain Pandora's boxes of knowledge. Such a person can still act with grace and doesn't have to be in an adversarial relationship with their doctor. But such a person might need to ask lots of questions – some penetrating, some stupid, and we might need a consultant who can put up with that. If they can't, then we may to find the courage to say that even though our consultant is wonderful in certain ways, there might be a personality clash. The courage to ask for another doctor, even though our consultant hasn't done anything terribly unprofessional or negligent. The NHS is supposed to allow for that. Why do I think this is important? Because we are facing the biggest fight of our lives with this illness, and there's a big difference between
dreading a visit and looking forward to a chat with our doctor.
My blood test results had shown irregularities in my plasma cells already years ago, as well as anemia. I'd been told that by one doctor, and assumed that if it mattered, they'd have taken it further. I waited patiently. I was a classic myeloma case in terms of symptoms. One day when I was feeling particularly awful, I went to my GP and said I wanted tests until we found out what was really wrong and I didn't care that it was a Friday and 4.30 pm. I got my diagnosis and my treatment,but by then the bone damage was rather widespread.
Both compliance and pushing are good, as long as they reflect who we are. And we should show concern for the psychological and emotional health of our doctors, as they have a very difficult job indeed.
I'd like to finish with a story about a woman called Cath in Australia, where I came from 18 years ago, before we settled here. I've slowly become the second type of patient – the one who wants to know what all the little numbers mean. Cath had gone through all the treatments available and was in a hospice getting palliative care. Someone in her family had researched a new drug on the Net. It was called Revlimid and they told her about it. She asked her doctors and they looked into it. It was unavailable. One doctor contacted the pharma company. Permission was granted for her to try it. She did. She had four years of wonderful response,left the hospice, and did a lot for many other cancer patients in Melbourne and in the area she lived in. An entire big phase of her life in which she grew and developed and changed in positive ways. Maybe her greatest achievement was not finding the Revlimid, but who she became in those four years and the satisfaction she experienced.
A rare story, I guess, but one that has always moved me.
Best,
Eva
Dear Wendy,
I think that some people do get a pretty good immune system after a transplant. It might take up to a year. I think that might be why certain immunisations are with-held until the 12 month mark as the body can respond to them better then and mount an immune response that might be considered 'worthwhile.'Of course, it can be very individual.
I've just had my first really major flu since diagnosis in 2008 and transplant at the end of that year. Colds yes, but a real flu – the first one. However, when I think about it, even though my neutrophils have been lowered by the thalidomide down to 1.2 ( normal 2.0-7.0), practically everyone I know in this part of the world has had this flu/virus whatever it is. Finally I got it and then my husband. My neutrophils dropped to 0.7, which is entering dodgy territory. I had to stop my myeloma treatment and I'm waiting for my immunity to improve. I've also been on antibiotics. I was told that when someone has a bacterial infection, their neutrophils might be likely to rise, and when they have a virus, they are more likely to fall. Of course, viruses can cause some bacterial infections- that's why we get antibiotics, I guess. Sorry about your colds. I'm sure your consultant or doc will monitor your immunity. When immunity falls too low, a number of things can happen. You might have to go off a treatment for a short while, if your meds are suppressing the neutrophils. Or some people get IV immunoglobulin from their hospital if they've had a number of serious infections in a year.
Best,
Eva
Hi Wendy,
My Prof is the first guy who did an autologous transplant in the UK. He was very keen to give me a second one. I had my first one in Edinbugh. I said 'ok' but let's try some other stuff first. He accepted that, especially as I had to get the myeloma down first anyway.
My first transplant lasted two years in CR then six months in a grey area because I was becoming oligo-secretory. My Edinburgh doc wouldn't send freelite test off to Birmingham and was waiting for my paraproteins to climb much higher.He said I wasn't oligo-secretory. Definition of that is someone who's a low-secretor, and therefore a bit difficult to monitor. Somehow all my instincts told me this was wrong. I kept thinking, what if I'm now secreting only a tiny fraction of what I did before, and am in real danger? I complained about bone pain to Edin Doc – he suggested tennis elbow and wrote letters to other consultants( including the Highland ones and my local Gps saying there was no way I had myeloma in the humerus (arm). I suspected I did. As the pains increased I got more and more scared – also scared to speak to other docs as they had instructions about my arm which made me look a bit bad or mad or hypochondriac or something….. Edi. doc also cancelled my zometa when Highland hospital wanted to give it to me, saying I didn't need it. Again, my bones and instincts were telling me I did need it – had never had it.
Anyway my arm shattered one early morning in May last year.It happened by itself, not as a result of a knock. Pain was worse than childbirth. I was in my Highland place. Very little pain relief as paramedics couldn't locate vein for cannula. I was screaming in agony and taken to Raigmore Hospital in a helicopter. Eventually they operated on me and surgeon said he'd scooped lots of myeloma cells out of my arm. I could have avoided it all and had a pre-emptive op if I'd been less frightened to ask for help as a result of my Edin Doc's stand. I've now got four metal plates in arm and have lost quite a bit of mobility.
Anyway, that's why I needed a second opinion. It was verified that, indeed, I had become a very low secretor, and that the freelite tests I was begging for were essential. In London I had lots of tests, including PET scans I'd been refused before and a BMB with sedation. It was discovered I had over 70% myeloma involvement in all my marrow and needed immediate treatment.
My four day stay in London turned into an eight week stay. The Prof agreed I could go back on CDT without the C ( don't know why that bit was left out). I really wanted to know if it might just work.It did. Went into CR after eight months. Am now on consolidation treatment with just Thal. Now there's a nice push and pull with the Prof about how soon I'll have the transplant – but we respect each other and we talk straight, so I'm no longer stressed about medical consultations. Prof has a lovely assistant who answers my questions on phone if I get anxious about something. The hospital in the Highlands are informed and kept up to date in case of emergencies. I do miss living in Edinburgh though as husband and I don't drive!
So, now you've got an idea of where I am treatment wise at the moment. The Edin doc is a myeloma expert. I forgive his mistakes, but not his certainties. We all make mistakes, and myeloma is so individual.
Eva
Hi Dai,
Eva here. I can see what massive thought you've given to our options. Thank you for that.I really dislike writing emails or letters – I will try to answer this one – but if you'd like to have a chat, I'll have more to say about options. Feel free to email me on evayouren@lineone.net and we can exchange phone numbers if you wish. I can do free calls at any time during the day or night.
I have a similar dilemma to you: I really really wish I had hung around to see how long my first remission from CDT would be. I guess I got panicked into the transplant. In some ways it was my fault; I hadn't done the research at that stage and just wanted to be 'told' what to do. I am no longer that person.
I think it's true that NHS doctors are following a kind of 'flow chart'for treatment. There is some leeway though – if you have severe PN you might be put straight onto Revlimid rather than Velcade – if you've had a blood clot from a high dose of Rev you might be taken off that family of drugs altogether. This has happened to a friend of mine recently. There has been no attempt to reduce the dose or take more care with avoiding clots, and my friend is running our of treatments. Deviating from that flow chart often reduces rather than enlarging our options, so I can't get too excited about it.
For lots of complex reasons( don't necessarily want to write about them), I've had to go private. I'd kind of forgotten I had medical insurance. I took it out because I have two sons, and I had visions of them being helicoptered somewhere distant after a serious accident. It didn't happen, but the payments continued via direct debit.
I absolutely had to have a second opinion after my first relapse. So I spoke to someone on the phone in London at an Oncology Centre in Wimbledon.
It was Prof Ray Powles – someone who has worked within the NHS most of his life. He has great affection and respect for the NHS and used to be at the Royal Marsden. Once retired, he's gone private, and helps to look after a marvellous facility there with lots of staff from all over the world. If feels like attending a meeting of the United Nations, but without the squabbling.
I live in the Highlands of Scotland and because my husband's an author, we have a base in Edinburgh, though we don't live there at the moment. I don't wish to be treated in Edinburgh( Again, I don't think I should go into it in this email). My consultant in the Highlands is lovely and well-informed. However,I've done the maths. With the population density here, there aren't that many myeloma patients, and especially one like me, who has become oligo-secretory and is possibly on the way to non-secretory, and who expects full disclosure and discussion of blood test results etc. So, Prof Powles sees me about once every three months and he liaises with the guy at Raigmore, in the Highlands. I get my zometa here once, a month. The local GP surgery does a blood test once a week and it's sent off to the Highland guy, and every few weeks, a vial is sent off to London. Yeah, I know it's complicated. I think most of my treatment is covered by insurance, with some bits still NHS.
Prof Powles is lovely and we can talk properly. It suits me that he's a polymath and doesn't mince words. I don't know how much longer I can fly to London though: it's exhausting, expensive, and we stay with friends who are probably traumatised by observing the side-effects of my chemo. We can't afford a place in London.
I've read that the NHS has with second worst survival rates for most cancers in the EU.( Poland worst). When I've tried to find out why this is in spite of our huge expenditure – I've been offered the idea that we have late diagnosis, so worse results. I doubt that's the full picture.
In the future, treatment will be more individual for MM, but it'll take time for that to filter through. There is no Utopia anywhere. People in the States can lose their homes and they can have huge co-pays for treatments that are free here. Those who have top insurance there can have great choices, but even then, they sometimes have to hire attorneys to fight their battles.
In the future, treatment will be more nuanced, sometimes with a number of drugs at a time, and with gene testing and other tests to see what we are likely to be responsive to. But will we still be here?
I wish you the best, and I'd love to have a chat. Again, thanks for raising these issues.
Eva
So so sorry about what you've gone through and for your immense loss.
Eva
Hi Ian,
Eva here. Also have swollen ankles though not very severely. I've been on Thal for about ten months and it probably has cumulative toxicity. Also have very mild pn.I'm on a small dose of diuretic. I think walking is good and having one's feet up from time to time. Sitting still at the computer with feet down is not supposed to be helpful.
Best of luck,
Eva
Dear Bridget,
Really sorry to hear that. How are you?
Eva
So delighted to hear that,
Eva
