[glencParticipant]

I’ve just been through the same process. Had my cells harvested on Monday and Tuesday this week and the injections from last Thursday. Bone pain is one of the side effects they warn you about. I had no side effects Thursday, mild back ache Friday but Saturday was more severe back ache and yes I know what you mean about it not being like the normal backache. It felt better if I walked around and kept busy rather than sitting. It was milder on the Sunday, then even though the hospital gave me injections on the Monday and Tuesday , harvesting days, I didn’t feel any side effects. I hope it eases, but be assured it should be expected. Contact your haematology team if you think it’s too extreme of course. Best wishes for the harvesting and transplant. My transplant is 30th April. Glennis x

[glencParticipant]

With regarding to immunity, my consultant said blood counts should be back into acceptable ranges within a couple of weeks. This will be monitored. Neutrophils are a key thing they’ll be interested in. If your neutrophils are below the range you will be at risk of infection. My consultant advised to treat the first 2 or 3 weeks after discharge from hospital like a lockdown. After that he said you can have visitors but no-one with a cough / cold etc. That suggests it wouldn’t be wise to go into crowded places because you don’t know who has what so you probably just need to be sensible and careful. But blood tests will show how at risk you are. I think the general fatigue might stop you getting back to complete normality for a while anyway. It is an aggressive treatment which effectively causes bone marrow failure so we shouldn’t expect too much of ourselves too soon. At some point you have to have your childhood vaccines and covid vaccines again because they will have been wiped out.

[glencParticipant]

I am due to get my cells harvested in mid April and transplant a couple of weeks after so I’m interested in the replies too. I think it’s right that everyone will have different responses/side effects so listening to other people’s experiences comes with a bit of caution and doesn’t predict what our own experience will be. From what I’ve been told and heard from others I think fatigue, diarrhoea and hair loss are pretty universal. My friend had her transplant last year.. She said at no point either during the 4 months of chemo treatment before the transplant or during the transplant/ hospitalisation itself did she feel nauseous or vomit. She normally has low blood pressure and this plummeted while she was in hospital. She said she was practically unconscious for the first week and wasn’t well enough to receive visits from her husband but she picked up after that. Her hair fell out almost immediately after the high dose chemo was given. Once home she slept a lot for the first couple of weeks but gradually built up energy levels. She described the harvesting process as boring too. I’m taking my friend with me so we can chat and she can help me with drinking, eating and resetting my place in my audio book if I fall asleep!

[glencParticipant]

Hi. I will soon be going through DVTD treatment followed by SCT, but I am only 59. However my friend has just been through the same treatment with SCT earlier this year and she is 68. She is now in remission and doing well, although still very tired. She coped well with DVTD. The SCT was unpleasant but she feels worth it. I suppose you can only take the advice of your consultant about whether they think your are fit enough. Best wishes with the decision making. It’s very difficult. X

[glencParticipant]

Hi morwenna. I’m about to start DVTD treatment soon. Like you, I feel really well (I’m 58, go to about 4 or 5 gym classes a week!) , so it’s hard to take on board that we have to do treatment that makes us feel ill. My paraprotein was only 18 at the last blood test but light chain ratio 127, which is the criterion determining the decision to treat in my case. It sounds like your treatment is working well. My friend has just been through the whole process including SCT and I think her results were pretty low after DVTD but maybe not quite zero, but I’m not sure whether there’s an official number. Her results are definitely all at 0 post SCT and she’s doing quite well. I hope the treatment is not affecting you too badly. I’m feeling quite anxious waiting for my start date!

[glencParticipant]

I’m glad your mum is doing so well. I would have expected her medical team to advise her on how long to isolate and what to do and not to do after a stem cell transplant. I’m going to have one next year but I haven’t had my meeting with the haematology team yet but I’m hoping they’ll give me some written guidance. My friend has just had a transplant with the same team and was told to isolate for 100 days once discharged from hospital. But after that she had 2 more months of chemo, then she has to have all her childhood vaccines again so still more vulnerable than before the transplant. The 100 days seems to be a general thing from what I’ve read online. But your mum’s team should be able to advise. They will be doing regular blood tests so should know what her immune system is doing.

[glencParticipant]

Sorry Marty I didn’t get around to replying to your second message but I am very grateful for the advice. Some of the info is a bit scary but I’m someone who’d rather know in advance and face the fear then feel more prepared to get on with it!

[glencParticipant]

Thanks Marty for taking the time to reply in such detail. That’s all really helpful, practical advice. I’ll definitely be covering all aspects with my team. I’d been warned about a few of those issues. My main worry is the extent to which I’ll be able to keep my house as clean as it needs to be and whether I’ll be able to coook/feed myself. We no longer have meals on wheels in my area but Wiltshire Farm foods deliver complete frozen meals and that seems like a good option until I get some energy back. I hope you continue to do well post transplant. How long did it take you to feel more or less back to normal, if at all?!

[glencParticipant]

Thanks Amanda. I wish you well with your SCT and recovery. How did you cope with the DVTd treatment? I agree trying to live in a sterile environment when you may feel too weak or ill to be cleaning is a challenge, but getting someone in to clean for you means risk of exposure to infection too. I’m already noting the areas where bacteria tends to build and planning alternative arrangements like ditching the draining rack! The equipment sounds like a good idea and I’ll look into that. I’m also thinking that using Wiltshire Farm Foods for complete frozen meals delivered to my door might be a good idea for the first couple of weeks. Basically all the things I put in place for my elderly Mum! Lets hope we feel much stronger than we anticipate. At least covid has prepared us to a large extent for the isolation part of it so just a few added challenges! All the best for successful treatment and many years of remission.

[glencParticipant]

Thanks for the advice David. Especially about the marathon! I definitely need to start taking it one step at a time and wait for the discussion with my haematology team. I hope you are still doing well 9 years after your transplant!

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