Hi morwenna. I had my SCT in May. I’ve been very fortunate that I’ve recovered well but at 60 I’m 10 years younger. Also I haven’t started maintenance treatment yet so I know that will make a difference to things like fatigue. Are you taking Lenalidomide? I’m likely to start that after my haematology appointment in January and not looking forward to it because I am currently feeling great, back at the gym, hiking etc. My friend had her SCT at age 68 and had a harder time than me. She still feels some fatigue about 18 months on but is nevertheless doing great now. It affects everyone differently and can take time
Enjoy those periods when you feel good and I hope they become longer and more frequent time goes on. Happy New Year. X
I have always kept a spreadsheet of my blood results. Currently my paraprotein is “too small to quantitate” so my hope is to keep it there as long as possible. In the UK it is always difficult to get our consultants and haematologists to comment on anything other that clinically tested medical treatment. In the US the hospitals seem to have a much more holistic approach looking at diet, supplements like curcumin and other natural remedies.
Having just had a glass of red wine with my meal that was a very encouraging post! I remember reading this article a while ago https://www.myeloma.org/blog/dr-duries/good-news-alcohol-not-bad-thing-myeloma-patients. I have been in treatment for the last year, including stem cell transplant, so haven’t been able to drink alcohol, but now I’m in recovery do enjoy a small glass of red wine a couple of nights a week. I may increase the frequency after your reminder. Living on my own I buy the small 180ml bottles and tend to have half of one of those. I will start Lenolidomide maintenance treatment around February and not sure how compatible that will be with alcohol but in the mean time I will enjoy this very welcome alternative treatment!. I am glad you are doing so well. Thanks for sharing.
I have been through exactly the same treatment over the last year. Side effects will be different for everyone depending on age, fitness, other medical conditions etc. Certainly the DVTD was not as bad as I anticipated. It tends to follow a pattern in the week where you’re fine on the day of the injections and the day after because you take lots of steroids, but as they wear off you feel more tired and lethargic for a couple of days, then start to pick up. With me it was fairly consistent so it helped me plan my life around it. I kept doing most things I was doing before but didn’t go the the gym on my tired days. The first side effect to hit was constipation (but for others it can go the other way!) so my my advice would be to take DulcoEase or equivalent throughout the DVTD from day 1 rather than wait for it to hit. You can adjust it accordingly (you will get this on prescription) . Some people get nausea. This wasn’t a problem for me but they give you anti sickness tablets in case you need them. a few of the drugs you’re on say they may cause anxiety and low mood. I was fine for 2 months, then in the third month severe anxiety and depression hit. If this affects you don’t be afraid to ask your doctor for anti depressants. They worked very quickly, but I’m coming off them now as I don’t need them. Key advice is to listen to your body. Rest when you need to and don’t get frustrated if you can’t do everything you used to. Try and do normal things, but don’t push yourself. The Stem Cell Transplant is another matter altogether. Again, for me, not as bad as I expected, but everyone will feel quite poorly for at least part of this process. I was in hospital for 2 weeks and a day. Only had 2 very bad days with sickness, diarrhea, lethargy etc but a few days before that was off my food. But I recovered very quickly. Appetite came straight back. I was tired for about 6 weeks and slept every afternoon but good after that. I am now feeling great. I’ve done lots of gardening and walking during the summer. Now that my immune system is improving after finishing the last cycle of chemo, and I’ve started to be re-vaccinated, I’m planning to go back to the gym next week. Everyone’s experience is different and you will probably get different responses on here, but I hope it goes as well for you as it did for me.
I was in the same position a year ago. My light chain ratio went over 100 and kept climbing so they recommended treatment. Although it wasn’t an outcome I wanted, I’d had smouldering myeloma for 2 years so had chance to adjust to the possibility. It must be hard for you being hit with an MM diagnosis and the prospect of treatment from the start so you will be feeling very anxious. Over the last year I have done 6 cycles of DVTD chemotherapy. I answered a question under the Treatment section of this forum this morning with more details of that if you want to take a look. I then had a stem cell transplant in May. On the whole, none of it has been as bad as I expected and I have recovered well. I’m currently feeling great and positive. There have been lots of blessings along the way and looking back I consider myself to have had a good year, in a strange sort of way! Lots of my fears were unfounded. Best advice is to take one stage and one day at a time. Don’t imagine how it’s going to be, because I worried about lots of things unnecessarily. Just take it as it comes. I wish you well on your journey. X
Hi Daffodil. I had a Stem Cell Transplant in May this year. This was preceded by 4 months of DVTD chemotherapy from November 2023 to end of Feb 2024. Weekly injections of daratumamab and Bortez, dexamethasone steroids on the day of treatment and the day after and nightly Thalidomide tablets. The first thing is to say is everyone will experience treatment differently depending on lots of individual factors so I can only speak from my own experience. I am 60 and was relatively fit before treatment started, with no symptoms from the myeloma.
Also, Im lucky enough to have retired early so didn’t have to think about whether I could work. But I had a busy life involved in my church and a charity supporting a hostel in India. I do lots of admin work from home, lead the music in church every Sunday, used to run a mid week group at my house, am on the leadership team of my church, used to go to the gym 3 times a week, meet friends for coffee, lunch etc. While I was undergoing treatment I was able to continue doing almost all of this. What you find is that the side effects of treatment follow a pattern during the week and this is fairly predictable so makes it easy to plan and avoid booking certain things in on the days you feel less well. Generally I would be fine on treatment day and the day after, then would feel more tired and lacking energy for a couple of days, then start to pick up again. I did reduce my gym attendance because one of my classes clashed with treatment day and another coincided with my tired day, but I still went once a week and did a zumba class and toning class. I never missed any if my church activities. I think because you work from home largely, you could probably plan your week around your treatment and side effects, bit a discussion with your employer about flexibility would be good. But you can only see how it affects you. Best wishes with your journeys. X
Hi. I had my stem cell transplant in May. The harvesting took place 2 weeks before. It’s the transplant, not the harvesting,
that affects the immune system because the high dose chemo (Melphalan) basically kills off a lot of the good cells in your bone marrow as well as killing the cancer cells. Some of my cell counts went down to zero. The harvesting doesn’t affect your immune system and didn’t make me feel ill in any way. The only issue about taking a holiday during the gap is whether you know how long the gap will be. I didn’t get a transplant date until the harvesting was done and they wanted me to go in for the transplant the following week. I asked for an extra week so I could get all my arrangements in place. Best wishes with the process.
Same to you and your husband. He will definitely be in good hands with staff who have done this 100s of times before. Best wishes.
Hi. I had my stem cell transplant in May this year. I hope my experience is an encouragement to you, but it’s difficult because everyone is different in terms of age, fitness levels, other medical conditions, reactions to drugs, side effects etc. I am a 60 year old woman and was relatively fit before I started treatment. No other medical conditions other than an underactive thyroid and I was at the gym 2 or 3 times a week doing 4 or 5 classes including high intensity Zumba! I am lucky that I started treatment before the Myeloma had affected my body in any way – no lesions, bone fractures or kidney problems.
My experience of the 4 months chemo was similar to your husband’s. I was fine on chemo day and the day after because of the steroids, tended to start feeling tired on day 3 and my worst day was day 4 when I felt quite lethargic, but then I picked up again. Towards the end of the 4 months I had developed side effects like muscle twitches in my face, voice muscles affected, irrational anxiety (the latter probably caused by the Dexamethasone but addressed quickly with medication). I still managed to go to the gym one day a week, on one of my good days, continued to go to church every week, do gardening and meet up with friends. During the break between chemo and stem cell transplant I very quickly returned back to normal and really enjoyed the 6 weeks without treatment. My side effects stopped and I went back to the gym 3 times a week. I took the opportunity, like you say, to build my fitness before the transplant. I hope your husband’s experience is the same and he can just isolate that stage of the process and enjoy each day. The harvesting process was fine. The worst bit about it was having a line in each arm and not being able to move my arms much or go to the toilet for about 5 hours on the first day and 2 on the second day. My friend and I stayed in a hotel for 2 nights and made a bit of a trip of it and she stayed with me during the harvesting and chatted and fed me sandwiches!
The stem cell transplant itself was unpleasant in parts but not as bad as I anticipated and my recovery has been incredibly faster than expected. I went into Freeman Hospital on a Tuesday and straight away had the high dose Melphalan chemo. It takes quite a few days for the side effects to kick in so I felt fine for a while. 2 days later, on the Thursday, they put my stem cells back in and I still felt fine. Really for almost a week the worst bit was feeling stir crazy in hospital because I was used to being active. Then I started to lose my appetite and found facing food difficult for a few days. My cell counts started to fall and eventually white cells and neutrophils go to zero. At that point I got an infection and, as they told me I would, I got sepsis. That sounds scary but it doesn’t need to be. They know you’re going to get it and because they check your bloods daily and your temperature 4 times a day, they are onto it straight away. When you spike a temperature they do blood cultures, quickly identify the source of infection and pump you regularly with the right antibiotics to fight it. I was in hospital for 2 weeks and a day and, apart from a few days when I lost my appetite, I really only had 2 very poorly days where I didn’t want to get out of bed, couldn’t keep food down and had diarrhea. As soon as they got the antibiotics into me I started feeling better and within about 3 days they discharged me. My hair started falling out about day 12 so I asked a nurse to shave my head.
By the time I came home my appetite was back and I really felt quite well. I’d been told I would have severe fatigue for 2 to 3 months or longer and that it would be an effort to go in the shower and get dressed. I live on my own so my friend came to stay with me for a week. However, I managed fine with all my personal care and even did a bit of cooking and gardening quite quickly. For a few weeks I felt a little more out of breath than usual doing normal things and I was tired by lunch time, so I decided to go to bed every afternoon and for a while slept for about 1.5 – 2 hours each day. Gradually that reduced. On Friday I will reach the 100 day point and for the last 4 weeks I have really felt more or less normal. I have been doing lots of gardening and done short walks of about 3 miles. I don’t need to sleep in the afternoon anymore. I’m being careful about social contact but went back to church last Sunday. I lead music from the front so I can be a bit socially distanced from people. My hair is just starting to grow back but is really just grey fuzz at the moment!
As I say, it’s difficult because your husband’s health and circumstances might be different to mine and his reactions to treatment might differ. It sounds scary when the consultant explains all the side effects and risks. They have to do that but you’re unlikely to experience all of them. For example I was told I would probably need blood and platelet transfusions during the process but I didn’t. I think the reality is less scary because you’re in such good hands and monitored carefully and regularly. I really wish your husband the best. I hope his experience is as good as mine or at least much better than you’re anticipating. I was told a stem cell transplant was the best chance of a longer, deeper remission, so for me it feels worth it. I guess time will tell. God Bless. Glennis x
I’m sorry to hear this and hope you get some clear answers about the change of decision. It must be hard waiting. I had a transplant in May and, like your Mum, had 4 months of induction chemo. But it wasn’t part of a trial, it was the DVTD regime so Daratummamab, Velcade (Bortezomib), Thalidomide and Dexamethasone. My consultant is also an authority on MM and a high profile nationally in the field. He still recommends a transplant as the best standard of care in the UK or I wouldn’t have gone through with it. But he did emphasise it is am aggressive treatment that carries risks. In the US, there definitely seems to be a move away from SCTs because of the development of new treatments. Some of those new treatments aren’t yet available here. What I would say is that the SCT was never sold to me as a golden ticket for long remission. My consultant said it was likely to give me a longer, deeper remission than other treatments. But he made it very clear that the myeloma would come back. There are plenty of treatment options out there and new ones being developed every day. I hope you get some answers and that they find a good alternative treatment plan that keeps your mum in remission for a long time. Best wishes to you all.x
I’m happy to talk about the stem cell transplant. On the whole it was not as bad as a expected it to be. I was in hospital for 2 weeks and one day. I went into hospital on a Tuesday and they took me straight to the day unit for a high dose of Melphalan chemo. Fluids were administered for 3 hours before but the chemo drip only lasted 30 minutes. For about 15 minutes before, the half an hour during, and 15 minutes afterwards I had to suck ice pops! This reduces the chances of getting mucositis (mouth sores). It worked pretty well. I did get very mild mucositis but really just 2 small sore patches in my mouth – noting worse than you might occasionally get anyway. I used mouth washes after every meal. By the Thursday, the chemo is out of your system, so they put your stem cells back in. This took about an hour and a half and was simply through a drip into a canula. They brought the bags of cells one at a time – about 5 or 6 I think.
I felt pretty good for a few days. The side effects are delayed. Initially my worst problem was feeling stir crazy in hospital. Gradually you start to feel a little less well as your cell counts drop, but to start with it was mainly diarrhoea (manageable) and losing my appetite. Having started off eating well from the hospital menu I got so that I couldn’t face a lot of the food and ended up having lots of plain things like jacket potato, or mashed potato and peas. The ward had snacks you could ask for at any time like cheese and crackers, pots of ambrosia rice and custard and these are the kind of thinks I could face. Little and often. My worst two days were about a week after the stem cells were transplanted back. On the Thursday and Friday I just wanted to sleep all day. The Friday was the only day I didn’t get showered and dressed. I had liquid diarrhoea and couldn’t keep food down. My neutrophils and white blood cells fell to zero, so no protection from infection and I did get sepsis as they warned me I would. That doesn’t have to feel as scary as it sounds. They know it’s going to happen and they are ready for it and on it straight away. They put me on IV antibiotics straight away and located the source of infection quickly. I wouldn’t have known I had sepsis – just felt like flue, sickness and diarrhoea. By the Saturday I already felt well and only improved after that. By the Tuesday they were ready to send me home. My neutrophils were back in range, although all other cell counts were still under, and I was infection free. I had been told that I would probably need a blood transfusion and a platelet transfusion, but my Hemoglobin and platelets didn’t go low enough for me to need that. So really only 2 particularly rough days and once you’ve felt poorly and then start having good days you feel euphoric!
I was told my hair would start falling out 10 to 12 days after the chemo and that was about right. One evening my scalp suddenly felt hot and sensitive and the next day I could see lots of hair on my pillow and could just pull clumps out. The next day I asked them to shave my hair off rather than wait for it to fall out. I’m not sure this was the right thing to do though because I hadn’t realised how uncomfortable the stubble would be and it takes a while for it to fall out (I still have quite a lot of stubble left eve now). I wear a sleep cap at night but it’s still prickly and a bit painful rubbing on the pillow. If I had to do it again I think I’d say cut it short, but not shaved and wait for it to fall out naturally so that the hair is still soft. You can still cover it up with hats / scarves if it’s a bit unsightly.
I was overjoyed to be back home afterwards and appreciated every small pleasure. I live on my own and my consultant advised I should have a friend come and stay with me for a few days to a week as I might find it an effort to do normal things like dress and shower. I didn’t find that to be the case but my best friend took a week off and stayed with me which gave me peace of mind, and we had a lovely time. I could look after myself and sort my washing out. Even did a bit of very easy gardening with my friend’s help but it was useful to have her there to help me with some of the heavier work. My heart rate was quite high when I came out and doing some jobs raised it to the level I’d normally get from doing my zumba class! My heart rate is coming down gradually. I feel well. The main issue is fatigue and they say that will last for 2 or 3 months. In my case it’s manageable. I feel pretty well in the morning, am flagging my lunch time, so took the decision to go to bed every afternoon, rest and read and sleep if I needed to. I have slept every afternoon for 1 to 2 hours and will continue to do this until I no longer need to. My friend went home after a week and my cat came back 2 days later so life is getting back to normal and I’m managing on my own. I was advised to treat the first 2 or 3 weeks like a lockdown. After that I can have visitors, but no-one with coughs and colds etc. I won’t be going to busy public places for about 3 months or until advised it’s OK by my haematology team. I am going to haematology once a week for blood tests and they book me in early on the morning when there aren’t many other people in and the unit has just been cleaned.
Sorry that’s quite long and detailed but I hope it helps, although I know everyone’s body will respond differently depending on age and other conditions (I’m 60 , relatively fit, no other significant medical issues and no damage already caused by the Myeloma). Overall I am pleased with how it went and relieved I feel so much better than expected. There have also been unexpected moments of joy and blessings along the way! I’m so glad to be on the other side of the transplant, which has been looming for so long and glad to be in recovery. Taking one stage at a time and determined to enjoy the next few months of rest rather than be unhappy about the relative isolation. Covid has prepared us well for that!
Take care and best wishes for the future. XXX
Hi. I have recently had a stem cell transplant. Been out of hospital just over a week. With regard to the stem cell mobilisation, it started about 6 weeks after the end of my 4 months DVTD chemo induction treatment. I was due to go to Freeman Hospital in Newcastle as a day patient on Monday 15th and Tuesday 16th April. The GCSF injections to mobilise the stem cells began on the Thursday before and were administered once a day on the Thursday, Friday, Saturday and Sunday. I was given the option of doing them myself (which I didn’t fancy) or having a district nurse visit every day (which meant being stuck in waiting). I have a friend who is a retired nurse so she agreed to do them and I went to her house every morning. My local haematology department gave me all the syringes, vials, sharps box etc, enough for 7 days (I was to take the remaining 3 days stuff to Freeman on the Monday for them to use as needed). My local haematology suggested I do the injections on a night. However, Freeman hospital said morning was better because they should be done at the same time every day and they would want to give me another one on the
Monday morning when I arrived and subsequent days if needed. The only side effect I had from the injections was back ache, particularly on day 3. The harvesting went reasonable well. First day I was hooked up to the machine for 5 hours so I was feeling a bit uncomfortable and desperate for a wee by the end of it
2nd day only 2 hours. My friend came with me to keep me company because it’s a bit of a boring process and difficult to move your arms without setting the machine off beeping. So my friend helped me practically, including feeding me sandwiches! They harvested enough cells for only one transplant. Ideally they would have liked enough to save for a possible second transplant in the future. Hope that helps and best wishes on your journey. I am glad to be on the other side of the transplant and doing well so far. X
Hi Nick. I completed my 4 months of DVTD in February and am going into Freeman Hospital on Tuesday for my transplant. I can only tell you my own experience but I guess the drugs will have different effects on different people, but the thing I wish I’d known was to start taking laxatives from day 1! They warn you that “bowel disturbances” are one of the side effects but it can go either way. They gave me laxatives (DulcoEase) and said take them as you need them. I made the mistake of waiting until I needed them. By the Sunday I was severely constipated and a friend had to go and get me suppositories! (Too much info but this became one of my topics of conversation!) I found a good balance after that, taking laxatives every day throughout the treatment (DulcoEase are gentle and good for long term use) and upping and reducing the dose as required.
On the whole I didn’t find the four months too bad. I got into a pattern of feeling OK on Friday (chemo day) and Saturday, because they will give you the Dex steroids on those days. By Sunday starting to feel a bit more tired and Monday was the day when I felt I had no energy or motivation. But then I picked up and was even doing my usual Wednesday Zumba class, albeit with less attack than previously. Which leads me onto immunity. I continued to go to the gym (although less often), to church every Sunday where I play in the band, to cafes and restaurants to meet friends and even to theatre concerts. At no point since I started treatment did any of my blood counts that affect immunity go below the range, although some did go down, and at no point did I catch even a cold. The haematology team were happy for me to continue doing normal activities so long as I had the energy. I think it will depend how it affects you and what happens to your blood counts.
The main “blip” in my journey was that in January / February I suffered from severe anxiety / depression for 2 to 3 weeks. It came on suddenly and the anxiety was extreme and a bit irrational. My consultant thought that it was probably caused by the Dexamethasone, but most of the drugs say they can cause anxiety and depression. I have never suffered from this before or taken medication but I did resort to seeing my GP and starting anxiety / depression medication, which is the best thing I could have done because I feel absolutely fine now. So I would say don’t resist doing this if you feel you need it. Once I’m through the other side I will come off it.
I hope that helps. All the best with your treatment. Glennis
PS. I should qualify everything I said above by adding that the situation will be very different after the stem cell transplant, when our immune systems are building themselves back up from scratch. So almost a lockdown situation for a while, then being very careful. But your team will advise.
I went through my DVTD treatment from November to February, followed by a 6 week break. Earlier this week I had my cells harvested and my transplant is booked for 30th April. I don’t have children so can’t answer your first question.
With regard to what you can and can’t do I think it will largely depend on how your husband responds to treatment, firstly in terms of how it makes him feel and, secondly, in terms of the extent to which he is immunocompromised. In my case, I had my chemo injections on Friday and felt fine Friday and Saturday because of the steroids given on those days. By Sunday I started to feel more tired and a bit shaky and Monday was my tired, lethargic day when I couldn’t be bothered to do anything. Then I started to pick up the rest of the week and feel pretty well. At no point did my blood counts that show vulnerability to infection (e.g neutrofils, white blood cells etc) fall below the normal ranges, even if they were a bit lower. They also give you antiviral tablets to take twice a day. So I didn’t consider myself to be particularly immunocompromised at that stage.
I continued with a lot of normal life. I used to go to the gym Monday, Wednesday and Friday but cut it to Wednesday because I was too tired Wednesday, and Friday clashed with my treatment. I continued to go to church every Sunday and play guitar in the band! I went out to cafes, restaurants and concerts, on the days when I felt well. I didn’t go on holiday, simply because I wanted to stay near my local hospital in case anything flared up. You will have instructions to contact them if various things happen, like temperature rises. But that only happened to me once. So you could probably get away with some breaks in this country if you let your haematology team know and ask who you would contact if there were problems. With regard to spa treatments you have to be a bit careful and the spa will want a note from your team to say you can have treatment. Detox treatments are no good while you are having chemo – you don’t want to flush the chemo out as you need it to work. Massages will depend on whether the myeloma has affected your bones. During my recent 6 week break from treatment I had a spa massage and my specialist haematology nurse sent me an email confirming it was OK. I would say take advice from your team, work out how your husband feels at different points in the week, plan your life around that and make the most of the good days, because there are plenty! All the best for the treatment. Glennis
