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Just to give some background to my mother in law’s myeloma story, apologies for the long read! My mother in law (MIL) was diagnosed with myeloma in February of this year. She is 66 years old and up until the end of last year was a very fit and active lady, looking after a very lively toddler, doing heavy gardening, always on the go etc until she began to develop severe back pain last November which was originally diagnosed as osteoporosis. After becoming bed bound in late January due to the pain, blood tests and scans revealed elevated protein levels, anaemia and abnormal calcium and kidney levels, as well as spinal fractures . She was admitted to hospital where eventually following a series of tests we were all shocked and saddened to discover she was suffering from myeloma.
The diagnosis came as a bitter blow for the whole family. My MIL is a retired nurse and has cared for a lot of friends and family who have suffered and passed away from cancer, including her own husband who died from leukaemia at 36 years old. To find herself now back in the same room that her husband had passed away in had a terrible effect on her mentally as you can imagine.
She was originally started on VCD but after finding the cyclophosphamide element made her extremely ill this was dropped and the Velcade and Dexamethasone were continued with. She has now had 6 months of treatment with these, is due to have a further 2 rounds and her paraproteins have dropped from 50 to 5. Each cycle of treatment has laid her very low in terms of sickness, diarrhoea, poor appetite, thirst and exhaustion. She has lost a lot of weight and muscle during this time although her mobility has improved. She is no longer bed bound, her pain is not as severe as it was (although during the week off from chemo each month it gets worse) and the hospital have been pleased with her quick response to the treatment.
From the beginning of this process the hospital team have been very encouraging about treatments and have been very optimistic that my MIL would be an excellent candidate for a stem cell transplant being a fit lady before this and having had no other health issues prior to this time. However, as we near the end of this journey the team seem to be suggesting that she may no longer be a candidate for the transplant because of how she has dealt with the treatment so far in terms of both the side effects she has suffered physically and mentally. They have told her that it is high risk in terms of infection and there is a risk she could die if she contracts an infection. However, we have read and been told that this risk is around 2%. They haven’t totally ruled it out as she is still waiting for an appointment from the hospital where the stem cell would take place, but they seem to be discouraging her from having it. This seems both confusing and disappointing in light of her good results. On the other hand her GP and the deputy matron from the surgery are both telling her that she should have it and that this will be her best chance for a long remission and returning to a “new” normal way of life.
So my questions are:
1. Has anyone not had the stem cell transplant and had a good remission time taking medication that didn’t cause horrible side effects and if so what medication was this on? We have read about Revlimid being a wonder drug.
2. Has anyone had the stem cell transplant and found the process so awful that they wish they hadn’t had it? Contracted infections etc, not a long enough remission time for the amount of suffering involved.
3. How did you decide whether the stem cell transplant was right for you vs maintenance therapy? In light of the risks associated with it. We don’t want to encourage her either way in case something goes wrong and we have to live with the guilt that we encouraged her down the wrong road.
4. Is there anything we can do to help my MIL to cope better mentally with this process? She is very low in herself, cries a great deal and is reluctant to seek help outside of the family. She has little faith in alternative therapies in spite of us encouraging her to try out different avenues. She does speak to a counsellor once a week on the phone but doesn’t find it helpful.
5. She has yet to start bisphosphonates even though her teeth have now been dealt with. The team seem to be putting off starting on these. Surely, this is essential for her bone pain and recovery? Did anyone experience a delay in being started on these and did they find them helpful with their recovery?
6. Her appetite for much of the week is very poor and she is finding it difficult to eat and drink. Does anyone have any suggestions that may help her with this?
7. Finally, if anyone has any other advice that could help us as a family and my MIL as the patient we’d be ever so grateful. We as a family are all finding this myeloma journey very challenging and want to help my MIL in any way we can to believe that she can get better.
Thank you very much for taking the time to read this.
Dear Rosie,
Regarding the stem cell transplant if you want to get quick responses to your questions I suggest you join, if you haven’t already, the UK Myeloma Support Group Facebook page; there are plenty of people on there that will be able to answer your questions and tell you how the SCT was for them. I was diagnosed at 57 with both Non Hodgkin’s Lymphoma and Myeloma in February 2017. I’ve had 18 months of different types of chemo as I didn’t respond to any of them; my Myeloma has been a bit of a problem for my consultant! Finally they have hit on one that works so I will hopefully be having a stem cell transplant later in the year. I must say I’m apprehensive as there’s no getting away from the fact that it’s risky and unpleasant with a long recovery period, however it is always our best chance of remission. You may find a call to the Myeloma Info line, where you can talk it through with professionals useful.
Every chemo is different and effects us all in different ways; I’m on my fourth combination and have found some are easier than others to cope with but I didn’t like Cyclophosphamide either.
If she is finding it difficult to eat then I would ask for a referral to the nutritionist at the hospital. At the beginning of my treatment I lost weight fast, which was worrying as I have always been thin. The nutritionist gave me a load of high calorie drinks (1,000 calories in each) which I found helpful. She then did a referral to my doctor who continued to prescribe them for me for a couple of months.
Has she got some anti sickness? I find Ondansatron works best for me. If the anti sickness isn’t working don’t put up with it. One of the drugs I was on made me feel very sick, I put up with it for a few days until a frien, who is a nurse told me to ring my team. I made the call and they had me in for some intravenous anti sickness which worked well. This was then built in to my treatment so that I went back in a couple of days after the chemo (when the sickness always got worse) to have this. Make sure her team are very aware of the issues she is having. As a race we are prone to minimise things and think we have to put up with it, we don’t!
Are you in touch with Macmillan? They are often very useful to have on board to get everything moving, to provide counselling and someone to talk things through with. This is a rotten thing to have and if you struggle mentally life can seem really draining for all of you. Perhaps both her and the family would benefit from going to a support group if you have one locally? We don’t have a local one but we did go to a Myeloma Info day last year; my husband said he found it really useful to talk to other ‘carers’ and to feel that we weren’t the only family to be in this situation. We are all affected in different ways; I’m a fighter and just get on with it as I can’t see the point in feeling sorry for myself but I have had friends who have had cancer and found it very difficult to cope with mentally.
You don’t say if she lives alone. Are there people that could visit regularly and take her out if she feels up to it? My friends have been fantastic taking me out, sitting with me through chemo and visiting me in hospital when I was in for a week. I also find that if I am out and about doing things I don’t feel as sick as I’m distracted. If you are sitting at home on your own, doing very little it can be easy to focus more on how bad we feel.
The best of luck. Remember you are not alone.
Paula
Hi Rosie,
I’d agree with a lot that Paula has already said. Everyone who gets this seems to react differently to the illness itself and to the various treatments so it’s difficult to give general advice but there are things we’ve found helpful.
My husband is the one with Myeloma and he was very ill to begin with, hospitalised for three weeks with severe back pain and very sick from the cyclophosphamide and the painkillers and afraid he was about to die. Palliative Care sorted out the pain relief (they’re not just for end-of-life care). The sickness didn’t entirely go until he finished the initial treatment.
The nutritionist was very helpful with suggestions about loss of appetite. He hated the special drinks but as he said nothing tasted right she suggested, among other things, trying more unfamiliar foods which wouldn’t be so disappointing. He was referred to her by our local hospital but ask for a referral if they haven’t offered. Also, as Paula says, if side effects are causing problems keep on raising this until a solution is found.
It’s not really possible to advise someone for or against SCT. We weren’t really offered an alternative. If your MIL hasn’t yet had an appointment with the hospital where the transplant will be done then you and she may find talking to them makes the decision easier. They’re the experts. The consultant at the hospital where David’s was done spelled out all the implications, including the fact that in a small percentage of cases it could be fatal. (I still remember watching his face turn ashen and mine felt pretty much the same). But he followed that up with, “But I haven’t lost a patient yet and I don’t intend to start with you” and for some reason we simply put our trust in him from that moment on. The process was pretty grim and he felt really ill but once he started to recover he made really good progress and was home in 2.5 weeks. He didn’t get into complete remission but needed no treatment for 15 months during which time he felt reasonably well. Other people on this forum have said it wasn’t as bad as they had feared.
Mentally I think it’s always a challenge. Once David felt able to return to a favourite hobby he could lose himself in that and it made a huge difference. The Myeloma UK site has lots of information leaflets and video clips which are really helpful and if you call the nurses on the helpline they’re really brilliant. My husband doesn’t want to know too much detail so I’m the one who does the research and filters through to him what I think he needs to know or would find reassuring. And the two Myeloma info days I’ve attended have been not only informative but encouraging in the numbers of people who are living remarkably well with Myeloma who attend.
Hope this helps a bit. It’s not easy for either the person with Myeloma or family and friends but there is support out there.
Pat
Hi Paula,
Thank you so much for your reply. Goodness me, it really sounds like you have been through the mill. I’m so glad you are on a treatment regime that is working well for you now. It’s great that you are managing to stay so positive.
I will definitely join the myeloma Facebook group and contact Macmillan, thank you for these suggestions.
My MIL was given some build up drinks by the hospital but I’m sure they weren’t as many as 1000 calories. Do you happen to know the name of the drinks you had so we can speak to the team about them?
She is prescribed ondasatron and of all the anti sickness medication she has tried she finds that the better one. However, she still feels sick for at least 4 days of the week after chemo. We’re not sure whether that is because of the chemo itself or the anxiety and worry of what she is facing. No one has ever suggested intravenous anti sickness so perhaps this is something we should be looking into.
She is married and my father in law does his very best to look after her but lately we feel that he has come to the end of his tether with it all. My husband and I visit frequently throughout the week but find it a real challenge to bolster her up when she is so down from the treatment and uncertainty of the future. We come away in tears every time we see her as we feel helpless to change anything. We are expecting our first baby in a weeks time and this has cast a huge cloud over what should have been a very happy experience. Everyone says to us that surely the baby is giving her hope and something to focus on but sadly it doesn’t seem to have had that effect. My brother in law and his family also visit but they have a three year old son who they are trying to shield from the harsh realities of her illness. Before the illness she was out every day, engaging with friends etc. We have suggested that she has her friends visit but she has told us that she would rather deal with this on her own and is shutting everyone out other than immediate family. I completely agree with you that sitting at home on your own in your head is a bad idea but because she feels so ill for so much of the week she has been unable to get out and about. Usually she starts to feel a little brighter around Sunday and then the chemo starts again on a Tuesday. We do take her out if she is well enough on those days in her wheelchair. Sometimes it seems to have a positive effect, other times she cries when she sees other people happily going about their lives.
Thanks again for all your advice, I wish you the best of luck with the rest of your treatment.
Rosie X
Hi Pat,
Thank you so much for your suggestions. It is useful to hear how your husband’s experience has been with the stem cell transplant and comforting to hear that he was home in 2.5 weeks. I’m glad he was able to have 15 months without treatment. If you don’t mind me asking, what medication is he taking now? It is also good to hear that the sickness went away for him after the initial treatment finished.
Trying unfamiliar foods is a good idea, as like your husband, my MIL says nothing tastes like it used to.
How long did it take post SCT for your husband to feel relatively well again and enjoy his favourite hobby?
I will see if we have any myeloma info days near us. Like your husband my MIL prefers not to know much detail about the illness so we do as much research as we can and let her know anything that will be useful to her. Often she doesn’t want to hear what we have found out and gets cross with us, even though it is positive which makes it difficult to make suggestions
I hope your husband continues to stay well and that you have plenty of support.
Rosie X
Hi Rosie,
I was diagnosed in October 2016, though I’d had bone symptoms for over a year. I also have COPD and a number of various, not so serious other conditions.
I became very ill very quicklyand was started on Cyclophosphomide, Thalidomide and Dexamethazone. Six 3 week cycles. I achieved complete remission in Feb 2017 and I then had 10 sessions of radiotherapy to a large plasmacytoma in my left iliac bone.
I had copious quantities of morphine in the early days and still take the slow release stuff with occasional oramorph for breakthrough pain.
I found the effects of chemo to be cumulative and by the 4th cycle it seemed to be a great effort to take it. Now it seems a great effort simply to be. To be alive and or awake. That sounds dramatic but it’s just a feeling that describes my level of fatigue, which is ongoing.
I have peripheral neuropathy and cognitive impairment, such that I don’t actually care about having cancer. I literally live in the moment, as both long and short term memory are very bad.
The only other side effect of chemo that I can remember is having swollen legs and feet and I feel that I still have some swelling just above my knees.
Nausea was well controlled by metoclopromide and indeed I never vomited until the other day after taking antibiotics on an empty stomach.
Unrelated, as far as I know, in June 17 I managed to get ischaemic colitis and thus sepsis and had to have my sigmoid colon removed. I’m left with a colostomy and a mucous fistula, needing to wear 2 bags. I don’t care about that either.
I’ve told you all that, not to alarm you but to explain why, early on, I made it clear to my consultant that I didn’t fancy having a stem cell transplant, as I didn’t think I’d handle it well. I also wondered if it was worth it to get an average 18 months extra, when it might take a year or more to recover from it. A transplant was never mentioned again.
In general, my advice is always ‘be sufficient to the moment’. That’s all you need to think about. Given any opportunity, live. And laugh as much as you can. And wear sunscreen, obviously.
I’d also advise anybody with cancer, or their carers, to consider anti-depressants. I’ve been on duloxetine for years and am incapable of holding a negative thought for more than a few seconds. For me, it’s a magic drug.
I wish you and your MiL all the best.
Bestt regards
Taff
Hi Rosie, we’re now 5 years down the line from diagnosis. My husband tends to respond initially to new treatments but relapse quite quickly so he’s gone through almost all that’s available. Revlimid, which many people mention as a wonder drug, didn’t work that well for him and Pomalidomide not at all. I mention that only because we’d hesitate to rule out any treatment that’s offered unless there are very good reasons as it can limit your options. He’s been on Carfilzomib since just before Christmas and so far that’s worked quite well in spite of a very rocky start. The alternative that was suggested was to move to palliative care only. We asked for a second opinion and are very glad we did. As I said before everyone is different with this illness. His quality of life is quite good at present and he gets on with what he wants to do as much as possible,working round the two treatment days a week for three weeks in four. He’d actually managed to take up his hobby again in a small way during the first treatment regime and that made a visible difference to him so that he was in a much better place mentally before the SCT, after which he picked up remarkably quickly. Like your MIL he didn’t want to see anyone or have visitors or go anywhere when first diagnosed. And people getting on with normal life while living apparently unhealthy lifestyles upset him terribly. I do think it takes quite a lot of time to get over the initial shock, especially when treatment just makes you feel rubbish, and hope your MIL will start to feel better physically when she finishes the first course of treatment and then have a chance to catch her breath and recover her mental equilibrium a bit. All of this is also very hard for family and friends! Refuse to be put off by what can feel like rejection and encourage as much as you can. It’s really important to keep your own head above water and accept any support offered. I was initially sceptical about Maggie’s but have found the local centre an absolute godsend recently. Hope some of this helps a bit and that things improve with the completion of initial treatment and a decision made about what to do next.
Pat
Hi Pat,
Thank you for getting back to me and letting me know about your husband’s medications. It is comforting to know that we are not alone in finding this process difficult and that others are finding it hard to come to terms with their diagnosis. I can completely understand your husband’s frustration that he is having to go through all this while other people who live unhealthy lives seem to get away scot free. It is hard to be positive at times in the face of so much adversity. I had not heard of Maggies but just looked them up. Our nearest centre is quite far away, the nearest is Cambridge and we live in Suffolk but will see if I can find any other local support. I’m glad that your husband is in a better place at the moment and hope that continues.
Rosie X
Hi Taff, thank you very much for your reply. Crumbs, you really do sound like you have had everything thrown at you and yet you are still managing to be positive. An enormous feat and very admirable. I can understand in light of all your other health issues why you would not want to undertake the SCT. My MIL is apart from the myeloma in good health which makes the decision difficult. It would be great if we had a crystal ball to know how she would respond to the SCT. It sounds like your positive attitude is helping you on your journey. It is also interesting to hear your thoughts on antidepressants. If you don’t mind, can I ask if you are still in remission or are you on maintenance therapy? I hope you continue to be positive and enjoy life.
Rosie X
Dear Rosie, I had meant to add my best wishes for your expected new arrival to my last post. I hope that you’re able to put other things aside to concentrate on that and that all goes well. Perhaps too once the baby arrives your MIL will be able to take an interest especially if she can help even in small ways. All the best to all of you.
Pat
Hi again Rosie,
I’ve been in remission now since Feb 2017, which is I think 17 months. getting past 1 year apparently, is goodly for the future.
I’m not on any maintenance for the myeloma but I take –
MST Continus (slow release morphine)
Oramorph for breakthrough pain, occasionally
Duloxetine, an anti-depressant
Omeprazole for GERD (gastroeasophageal reflux disease)
And a rescue pack of prophylactic antibiotics and steroids for COPD, taken when I think I’m getting a chest infection
I’ve also been anaemic since my initial surgery in June 2017, and it’s as yet, been undiagnosable (my Hgb level hovers around 85/90 g/L).
Also had a prophylactic nail put in my left femur. Surprisingly I was out of hospital the next day, able to weight bear a little. Remarkable.
All in all, I appear to have responded to initial therapy very well but I’ve no idea how common this is.
Hope that helps
Taff.
Hello Rosie,
Not an easy decision regarding your MIL’s SCT. Together with the physical and mental trauma of her knowing she has Myeloma (MM). I was diagnosed back in the summer of 2015. My consultant was very matter of fact with the announcement, and it took me (and my wife) a few minutes to get back on an even keel. My consultant’s words were, “we are where we are…” the implication being that I’ve just gotta get on with it! And that’s what I’ve done — but not always easy Rosie. Patsyann was absolutely correct in her post — and I doubt if any MM patient in their right mind would advise you (via this website) for or against an SCT. All they can do is recount their particular MM history, and herein lies the absolute difficulty with MM, because in a way, individual histories are pretty meaningless; since MM and more importantly the treatments, affects individual patients in completely different ways, so even if you had a dozen or so ‘potted histories’ from various MM sufferers, I suggest it would be inadvisable to apply any of these, in great detail, to your MIL’s case. Even if you had a hundred or so case files and diligently went through them in great detail to look for patterns, I think you’d still be lucky to get it right! So in the absence of this, and if it were me in your situation, I would heavily rely upon, and ‘go – again’ with the MM consultant team, ask them loads of questions, be happy that they’ve responded in terms you understand and have answered your questions and take your time before advising your MIL what you think the best course of action is.
Good luck, and best wishes to your MIL, Peter
Dear Rosie,
I was diagnosed with Multiple Myeloma in August 2016 at the age of 73 being a very fit person, that was my specialist words, I was offered a stem cell transplant after careful consideration I decided to refuse as it would be some 6/12 month process and would only guarantee me at the most 12/18 months possible remission. My initial treatment of Thalidomide, dexamethasone and Zometa took six months after which the Myeloma was in remission I am at this point still in remission and back playing golf and keeping as fit as I possibly can, so please take hope and be as strong as you can, we can all fight this sleeping cancer together.
Hi Rick, thank you very much for your reply. It is very good to hear that you are feeling so well in yourself and back to enjoying golf. My mother in law finished chemotherapy in August. Since finishing treatment she has been trying to get stronger and get back to something of a new normal before deciding which way to take her treatment. However, she is really struggling with bone pain and finds the medication either ineffective or makes her feel very woozy and sleepy. In the last few weeks she has had very little appetite, has lost weight and has felt sick and had diarrhoea, a bit like how she felt during chemo. Blood tests have shown a very slight increase of paraproteins. The myeloma team have given her a month off zometa in case this is causing her symptoms. She has only had a couple of months on zometa so far. She has also recently started taking curcumin supplements which she has also stopped in case this is causing her symptoms. It’s all so confusing. She is very downhearted at the moment as she was expecting to feel better at this point than she does. Are you on any maintenance therapy? Are you still having zometa infusions? Do you take any curcumin supplements? Just wondered if you had any tips for my mil based on what has helped you feel stronger again. Many thanks, Rosie
Rosie,
I was just wondering how MIL is coping, I do hope that there has been some improvement in her condition.
Rick
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