Just been diagnosed!!

This topic contains 88 replies, has 18 voices, and was last updated by  richard48 4 years, 2 months ago.

Viewing 15 posts - 61 through 75 (of 89 total)
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  • #133575

    rob47
    Participant

    Hi Richard,

    Good to hear your into SCT process and that the harvesting went ok. I had my harvest a few weeks ago, a bit of a drama just before the harvest with an unusually severe reaction (intense lower back pains) to the GCSF injections but thankfully that was just for a short period and we got the stem cells we needed. I had to get clearance from the orthopaedic consultant to go ahead with the SCT given the lower back problems I have had, but fingers crossed I am booked in for the 5th June for the SCT.

    Best of luck for next week.

    Rob

     

    #133577

    richard48
    Participant

    Thanks Rob,

    Glad you’ve got your stem cells and are in soon too. I did have bad pain for about 24 hours from the injections. It was very strange almost like every time my there was a beat from my heart it shuddered through my body. I was told it was all ok and was actually a good thing…! No pain no gain.

    Have you ever been asked about having a mini allo/donor transplant at all?  The consultant at MRI and the one I had at Oldham are keen for me to go down this route a few months after this transplant. It’s a tricky decision to make at the moment and I hope to find out more and hear about some people’s own experiences as to why they decided to have a mini allo transplant.

    Good luck for the SCT Rob – I’ll keep in touch through my SCT with me being a few days ahead of you.

    Richard

     

    #133579

    andyc
    Participant

    Day 3 of chemo, so very early days for me. Only side effect so far is the taste of water which I found disgusting at first but I am gradually getting used to.

    Thought I would be more tired than I am, and that the drugs would help me to sleep better, but had a very restless night last night.

     

    #133587

    richard48
    Participant

    Hi Andy,

    The tastebuds may change from time to time but hopefully the water one for you won’t be long. Do you have to drink a certain amount each day- most of the time  it’s 3 litres. Because the myeloma had hit my kidneys I have to make sure I drink at least 3 litres a day (I try to do 4 plus) I’m used to it and it can be boring but when I drink other things they all taste so good -especially a few beers!

    It may have been the steroids keeping you awake the other night-dexamethasone. That was exactly the same for me the nights I had to take it.  The thalidomide did help me sleep though on other days/nights in between regular toilet breaks.  It’s about getting your body attuned to it and the rest of the cocktail of drugs that you have to put inside it and I’m sure you will get used to it.

    All the best,

    Richard

    #133588

    adriwest1
    Participant

    Hi Richard, so happy to see you are making good progress with this marathon of treatment (I still find the whole thing a bit crazy) you are now ahead of me on the treatment as I had two extra treatments (8months in total). Due harvesting soon and was looking for any feedback/tips please- not good with needles etc..

    Not sure about the mini allo but I did speak to Scott (member on here) who had this procedure done over three years ago and sailed though it, it weird for us as we seem to have to make decisions about what treatment to take as if we are the experts.

    Regards

    adrian
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    #133589

    annlynn
    Participant

    good luck rob. im having second sct on 6th june no harvest needed because i got a lit the first time awfull pain though with the gfs but told the same as you the more pain the more stem cells we would get good luck annlynne

    #133590

    rob47
    Participant

    Hi all,

    Thanks for all the good wishes

    Richard – I have not had any discussion with the consultants about a mini allo/donor transplant post SCT. I am having another consultation at UCLH on Wednesday so hopefully find out a bit more about treatment post SCT. I guess it depends to a certain extent the degree of effectiveness of the SCT. Good luck for Thursday

    Annlynne – Hope the SCT goes well.

    Andy – glad you have started treatment unfortunately the dex/steroids did cause me sleepless nights aswell. It will wear off but unfortunately you will probably have “dex days” in each cycle, which whilst difficult to avoid you will learn to live with. Keep positive and I hope the treatment goes well for you.

    All the best

    Rob

    #133591

    andyc
    Participant

    Hi Rob

    Cheers for the feedback. Much appreciated

     

    #133610

    richard48
    Participant

    Hi Adrian – glad you’re well and approaching your SCT. I nearly had to have another cycle or two as my light chains started to creep back up but we put it down to a virus but luckily it shifted very quickly.

    As for things so far re SCT the initial cyclophosphamide wasn’t too bad – I did feel queasy and was sick the morning after just the once, but the anti-sickness tablets kicked this in to touch very quickly (an hour or two honestly)  My appetite went down which was really strange -I couldn’t believe I turned down a piece of chocolate cake on one evening. I would normally eat the whole cake!  The hardest thing recently has been the effects of the GCSF injections – bone pain etc  about 36 hours before collection – but I kept my head in gear by just remembering that the pain was good (as the nurses told me) and it was just the stem cells itching to get out? Not sure if you’re in to mindfulness or meditation but I used it a lot over this time, particularly during the night when the pain was pretty bad but controlling my breathing really helped, and although it was short lived I did get some sleep. Just remember it’s all for the good and is for just a short time and the pain goes away quickly. As for the injections you could get the district nurse to come out to you. I was offered this and I am sure this is routine, which should make things easier. I hope that helps.

    I’ve got in touch with Scott thanks and I’ve decided to try and hold fire on things and making a decision on a mini allo SCT until I’ve got through this one, so I don’t get any more anxious.

    Good luck with everything and keep me posted.

    Rob – like I said to Adrian-I’m putting the mini allo on the back burner for now but if you get any info post SCT at your meeting it would be good to hear.

    Best wishes everyone,

    Richard

    #133637

    adriwest1
    Participant

    Hi all, please could I have some help- I was told there was more chemo before harvesting, is this correct? Also I was told I could lose my hair at this point? I know I will lose it but didn’t expect it at this stage- please could I have any thoughts on this- kind regards Adrian.

    #133638

    kevin
    Participant

    Hello Adrian

    I have had two SCT and from my recollection I had a dose of chemo (melphalin I think) on both occasions about a week before the harvest followed by injections to encourage new stem cell growth. This was done as an out patient. On admission to hospital I was given another dose of chemo before having the harvested cells implanted/ As regards hair loss again not sure of the time scale but think I started to loose mine during my stay in hospital for the implant and that was about 3 weeks after my initial chemo for the harvest. As to it coming back I think it started a few weeks after coming out of hospital. I did not possess much hair on my head before all this but noticed it coming back when I had to start shaving again.
    Best wishes
    Kevin

    #133639

    adriwest1
    Participant

    Thanks a lot Kevin- best wishes on your next treatment mate.

    #133641

    adriwest1
    Participant

    Richard, thanks for you feedback, I will keep in contact with you,

    Adrian

    #133642

    superwoman
    Participant

    Hi Adrian like Kevin said exactly three weeks from having the chemotherapy given to me before harvest which starts the body producing stem cell my hair fell out. For me as l had long hair was very traumatic but was warned this would happen around his time. I had Hairdresser on stand by and she came right around on that sunday for me and l shaved it all of which actually wasn’t as bad as l thought to be honest it was worse seeing it falling out.

    You will have a very high dose of melphalane day after you go into have transplant which will wipe out any remaining cells then next day is when you will have your harvested stem cells put back in then it’s a case of waiting for them to do their magic all the best and keep strong. Kate

    #133643

    adriwest1
    Participant

    Thanks Kate, I guess it’s a case of wait and see, I’m not sure why this hit me- I have been very lucky and managed to work nearly all the days I have been on treatment and wanted to carry on right upto the last point, I’m self employed so it make life a little more challenging with finance.

    Thanks again

    adrian

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