This topic contains 29 replies, has 9 voices, and was last updated by 
149548 REPLY
lyshz03
Participant
Hi,
My husband is due to finish his chemotherapy this week having had 4 cycles, he will have at least a month off & then around 27th Sept he will have the line put in, in readiness for the SCT & the harvest done on the 30th & transplant done around 3 weeks later providing a bed is available. The chemo has been tough he feels good on chemo day Thursday & good Fri & Sat & by Sunday rubbish. He has mobility issues as he had a tumour removed from his spine in Dec due to myeloma, he struggles to walk & has had physio but with the treatment he finds it really hard to build his strength needed to walk, we’re not sure how much the op has affected his walking but hope after the chemo finishes he may gain more strength & improve before the next onslaught SCT. He’s not looking forward to it & to be honest neither am I, I do take comfort in the fact though that most people seem to accept that this is the best way forward in delaying this disease for a bit & maybe getting your life back into some semblance of normal but there is a lot to go through to get to the gain. We like every one else in the group hope that things go well & I know that I am going to have to be strong for him & our family. Is there anything anyone can say to make us feel this is really worth it as I know they have to be totally honest with regard to the expected side effects of the treatment but truly they sound really scary & having been through so much already I’m really concerned for his well being?
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
Hello Glennis,
Thank you for your prompt response it is so lovely to hear that things weren’t as bad as maybe expected. I hope that we will have a good response too & that the next month free of treatment will help him improve greatly before he starts with the stem cell transplant. I think my main concern is the infection as he had a really nasty one after his spinal operation & it took weeks to clear enough for him to be able to start his treatment, radiotherapy & then chemo & the thought that he will definitely get another is quite daunting although as you say they are basically waiting for it & will treat it straight away. I hope you continue to improve you sound like a very active person & we wish you well & a long and happy life, thank you. Lynn x
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 Glennis,
We’ve just come back from the hospital my husband has finished his chemo & is now having his month or so off treatment before the stem cell transplant. Just as a matter of interest did you have to have cycles 5 & 6 of chemo after your sct? My husband is a bit upset at the thought for some reason we thought it was just maintenance after, although I do seem to recall the other specialist mentioned this but didn’t think it would be 8 weeks worth of chemo.
Thanks in advance
Lynn
Hi
I had to have 2 more cycles after my SCT and then I went on to maintenance treatment.
It is a bit disappointing but it will get better once on maintenance.
I am now 18months in remission and only have to go to the hospital now once every 2 months just for a blood test. My consultations are done over the phone.
I hope everything goes well for your husband and just remember it WILL get better.
Hi,
Thanks for your reply twinz, yes I’m sure it will be worth it in the end it just seems like going backwards having chemo again but I’m sure they know best. We keep thinking yes it’s got to get better & next year can hopefully start with a brighter future having had this year a write off with all the treatment he’s had as he went into hospital last December & hasn’t been well since. At least we can see the light at the end of the tunnel 🙏🤞
Hi,
Just to let you know my husband hopefully will be having his stem cell transplant tomorrow after delays due to him having melanoma & having to have that treated, he just seems so unlucky to say the least. He had to have a respiratory swab test today because he’s got a cold & they want to make sure he’s ok for the treatment , so as long as there’s a bed & his swab results are ok he’ll be going in. I can’t say I’m looking forward to his treatment because he has been so well in the last few months & we know that the stem cell transplant will knock him about but I’m hoping his remission will be worth it, I’ll keep you posted.
Lyshz x
Good morning Lyshz, as a fellow carer I read your post and thought I’d try and write a note of encouragement. My husband was diagnosed just over four years ago and his myeloma was very far advanced. He was given 3-4 months without treatment. He went for all the chemo and the SCT and here he is still with us today. I won’t lie and say it’s been easy, but what we have had and which I will cherish is the opportunity to make so many happy memories. In the first year after the SCT we booked so many trips away (in the UK) and spent three months exploring parts of England which we hadn’t seen. My husband went from not being able to get out of the armchair without assistance to walking for miles and miles unaided. He’s been able to see with pride our eldest grand daughter leave school and attend college and watch our other grandchild become part of Team GB and represent her country in Portugal. Our nieces and nephews all came over from the U.S. and we spent a wonderful two weeks together. Last year we reached our Golden Wedding anniversary and my husband turned 70, both events I didn’t think we would see together. We’ve had so much support, love and encouragement given to us from our friends and family, it’s helped us get through. So, yes, hard work and hard times ahead but it’s definitely worth it for the memories you’ll make together. Keep thinking positive and keep smiling, with love and hugs, Marion xx
Hello Marion,
Thank you for your response & yes it does give me hope that there will be life at the end of the SCT tunnel we are hoping for a better year getting about more & going on holiday. Things have been so much better recently his mobility has improved greatly so we’re hoping that this carries on although with the surgery he’s had we can’t expect things to be 100% again. When I read other posts though I see that it’s not an easy road ahead in the short term but hopefully it will give us many years of a better quality of life. So we’re waiting for the phone call today & hopefully it’s onwards & upwards.
Many thanks again & I wish you & your husband a long & happy future.
Lynn xx
Hi Lynn, The SCT is very doable and short term and it really helps when you are planning treats/breaks long term. I am just over 11 years post SCT now, with no maintenance treatment, even tho I have high risk genetics. Life will get back to normal over time – I wished I’d truly believed that during the process as I would have saved myself a lot of angst.
Good luck 🤞
Thank you for responding I’m grateful that you can offer such hope for the future. Just got to wait now as my husband has RSV so transplant delayed till he gets over it, we will get there eventually!
Thanks,
Lynn
Hi Everyone,
Well after a bit more of a delay he is in hospital & has had his chemo today so hopefully this is the start of a new beginning. I know we have a long road to recovery but now he’s taken the first steps we can look forward to some form of normality soon. He is feeling really well at the moment & I’m hoping the treatment isn’t too bad but I’ll keep you all posted. Thanks again for your support it’s so helpful & appreciated.
Regards,
Lynn
Hi Lynn.
I’ve been reading all the comments with great interest as I am on third line treatment now after 2 sct’s. I thought I would give my experience so it may help you. I’m 59yr’s now and was relatively fit before the sct’s and am also am epileptic. Cutting a long story short, it took a few days until the stem kicked in but when it did the side effects were awful! I only had to endure for 3wks thgh and was out after that with a 3-4 month recovery time at home but it put me in remission for a couple yr’s each time and I was a totally diff person. I do know that there were others that were in for months thgh as they were older and found it tougher. If you can ride the wave I personally thk it’s a good thing as you get ur life back for a while but it is a tough wave to start. I really hope you too find it beneficial. I’ve not heard one person say it was the wrong choice. I even tried for a 3rd but they say I cant and it won’t benefit me so I’m on a diff med and I don’t like it. Plz keep us updated and hope all works out.
Daz
Hi Daz,
Thanks for your reply. As I said he had his chemo last Wednesday stem cells Thursday & Friday & was feeling great but as you know when the chemo kicks in things aren’t so good. He started feeling rough Sunday & yesterday was in bed all day not really wanting to eat still feeling crap today but hopefully it’ll pass soon as it’s all been expected. This was his only chance of stem cell as he is 69 so we had to give it a go & hopefully as you & others say it will be worth it as it does improve quality of life. I will keep you updated as I think this forum is very helpful for everyone involved with this disease so that we know we are not alone
Lynn
You must be logged in to reply to this topic.
