I am so sorry to read about your Mum and I send both you and your Mum warm wishes at this very difficult time.
In terms of the mental health side of things, what size hospital is your Mum in? If it is a major cancer centre, they will definitely have on-site psychiatric and/or pyschological support. You just need to make it known how…[Read more]
Welcome to the forum although sorry for the reason you had to post. I hope things went well yesterday and you have a bit more information about your situation. There will no doubt be a lot to take in, so take your time, do your research, ask questions and try not to worry as best you can. I would advise sticking to well known myeloma…[Read more]
Welcome to the forum.
I know how easy it is to get stressed out about blood readings, trust me I have been there!
The best advice I can give you is to try not to think about it too much. In my experience, readings can vary by a lot very quickly and different machines can come up with different results. The best bet in my opinion is to…[Read more]
Thank you for posting although sorry for the reason you to post.
I think your question is a really hard one to answer because myeloma can be such a unique disease affecting individuals in very different ways.
Kidney failure can happen, infections can get people due to weakened immune system, it could be the treatment that causes…[Read more]
Welcome to the forum, although I am sorry for the reason you had to find it. I have had 4 of the 6 drugs you mention. I think a lot of the time it can depend on the dosage of the drug, but generally speaking I found melphalan and prednisone to be the worst. The former gave me very bad stomach problems and the latter significantly…[Read more]
Sorry about your name!
I was treated in Bristol and I cannot praise them highly enough – they seemed to know what they were doing.
I have the light chains myeloma so slightly different to yours (my PPs have never been high) but other than that the time frames seem very similar – diagnosed March 2015, auto SCT Oct 2015, allo SCT Feb…[Read more]
Not sure if it is the same but I have had what was called a tandem transplant – an auto SCT followed by an allo (donor) SCT about 3 months after. I had the donor SCT when I was in remission – I was told it would give me the longest possible remission.
it’s a tough process to go through – a donor transplant brings additional risks n…[Read more]
i would back up what beetlejuice said – it can be two to three weeks after SCT before the patient begins to feel better. I was pretty shattered all the way through and often it was a comfort to have loved ones there even if I didn’t really engage. I took books in with me but never read them. Things tend to turn when the blood counts c…[Read more]
Really sorry to hear your news. I was 36 when diagnosed and it knocked me off my feet. I’m almost 3 years in now though and feeling well, but as others have said it is a long road so look after yourselves and take things slowly. Any questions I can answer from a relatively younger person’s perspective, i’d be happy to help.
Really sorry to hear your news, I really hope it starts to get better soon.
The only thing I can offer is whether some of the depression and panic attacks are down to prednisolone? I am not saying the emotions are not real, just that when I was on pred, everything was much more intense – steroids are known to do that and I think you…[Read more]
An allo transplant is a donor transplant, the exact same process as an auto except it is someone else’s cells going back in. The thought process is the donor’s stem cells might do a better job of attacking the myeloma cells. But it is considered higher risk as there are more potential complications.
I did mine more than 18 months ago so…[Read more]
I was 36 when diagnosed two years ago – not nice to be in the “extremely rare” group as my doctor put it. I had VCD, followed by tandem stem cell transplant (auto, then an allo 3 months later). Please feel free to ask any questions you may have.
All the best,
sorry I can’t remember my counts between cycles but I can confirm the chemo is harsher in prep for SCT, the logic being you really want to blast those myeloma cells before you put the baby cells back in. Melphalan was the worst for me, it made me badly sick but only for 1-2 days. It also makes your hair fall out. It is tough for a…[Read more]
It can depend on a number of factors – whether there are any complications (e.g. Unexpected infection), bed space, personal preferences (I asked to put my admission date back a week to avoid by birthday). I think mine was about 3-4 weeks – I think anything up to 6 weeks is normal.
Wishing you all the very best,
Many thanks for your note, it was a very kind thing to say thank you. I think you are right that there is something unique about the patient’s experience that only a patient can understand, although sometimes I do wonder if it is actually harder to be a loved one, because a cancer diagnosis happens to you too, but not physically, which…[Read more]
I had a PICC line in my arm, I am guessing yours is going into your chest? I don’t know if the process is different or not. When it went in, I found it painless but a bit strange. The people doing it are very experienced.
Once it is in, the key thing is keeping it clear of infection. It sound be changed once a week and try to get a…[Read more]
Hi Peggy, I agree with Susie, definitely best to get it checked out.
Is your husband taking dexamethasone? When on that, I often started sentences and then forgot why I did, so it could be that, but it wasn’t as bad as you describe, so definitely best getting it checked out.
Wishing you all the best,
I reckon everyone reacts differently although my guess is most people would say 6 weeks is still pretty early on in the recovery phase, especially if you have been re-admitted which is bound to knock you down a bit. In my experience, it was about 3 months before I felt like myself again and I had a pretty smooth run. I wouldn’t be…[Read more]