[compass007Participant]

Ok my cells have been harvested all went well I have enough for 2 lots of SCT if needed the date is booked for 7th March for the actuall treatment, I had a lung function test last week, and have a PET scan booked for this Saturday morning at the QE Birmingham, I have had lots of scans and x-rays CT scans MRI scans but not a PET scan apparently this highlights any bad cells the chemo didnt get….I get another strong dose of Chemo on day one then my harvested cells are re-introduced to my body not fully sure what to expect but happy to deal with it as it comes, 3 weeks in hospital and the boredom will be tuffer than the treatment, as I spent 3 weeks over xmas and New year in hospital I speak from experience….and I have already had 4 sessions of DT-Pace Chemo and Velcade and Chop prior to that….although im a little apprehensive I am very up beat and positive the consaltants and team have been fantastic with talking me through and explaining the Pros and Cons so I am fully aware of the dangers but also the benefits, hopefully if all goes to plan I may get some remission, anyway bring it on…..One Day At A Time Hey….

[davidbrParticipant]

Hi compass007

Hope all goes well for you and wish you well for the future. I am 2 years post SCT and doing well. Only have a 6 monthly check-up at hospital now. Just have some aches and pains, don’t know if that is my age (61) or Myeloma. Still not working and enjoying my early retirement, but have to have some good come out of this cancer. Living on the governments kindness at present, I have a review in June so I hope they are going to be kind to me.

So hoping you have a successful SCT and get some long remission time.

Best Regards

[nickyrParticipant]

8 months post SCT here.

 

My SCT was not a happy experience.  I was in hospital for 4 weeks (3 for the transplant and a further 1 with an infection).  I felt really ill for the duration and for some considerable time after.  Boredom was not really a factor for me as I was so ill I couldn’t really contemplate doing anything other than lying down.

 

But everyone’s experience is different.  I’ve spoken with people who have sailed through SCT with no problems.

 

But (and it’s a big but) it was worth it.  My bloods are where they should be at this stage and although I’m still suffering a great deal of pain due to extensive back surgery (the myeloma resulted in a shattered L3 vertebrae) and partial loss of mobility, at least I’m still here.

 

I was medically retired from work 9 months ago at 51 and that’s just sunk in really.

 

So fingers crossed for you and wishing you all the very best for your SCT.

[compass007Participant]

Hi thanks for the reply I am 50 and I hope I get to the remission you have its quite confusing as to why some can get only a few months and others over ten years right now i would be thrilled with somwhere inbetween but I know that may not be possible but like I said I am quite a positive person and of course I have hope…….

[compass007Participant]

Hi nickyr can I ask what Chmo you had prior to the SCT, I wish you well with your remision.

[janwParticipant]

Hi, Just thought I would wish you all the best for your transplant at the QE Birmingham next week. I hope all goes well and the treatment gives you a good period of remission. I had my first sct at Heartlands hospital in 2010 aged 53 years, which gave me a good five years of remission. I changed to the QE hospital in 2012 and started relapse treatment in October 2015. I am currently undertaking my sixth cycle of Velcade, Cyclophosamide and Dex, which is in preparation for a second sct at the QE this April/May depending on my light chain results in a couple of weeks time. I still might need some further cycles of VCD in order to drive my light chain levels to below the 90% reduction target prior to sct. Unfortunately, I only managed sufficient stem cells for one sct during their harvesting in 2010, therefore I still need to get through the process again after the end of the VCD cycles.

You’ll have to let me know of your experiences of your sct at the QE and what you thought of their facilities.

Regards Jan

[compass007Participant]

Hi Jan and thanks for the best wishes…my message may be a little confusing, it was my PET scan that I had at the QE Birmingham on Saturday the SCT treatment is at Birmingham Heartlands, although my consultant is Dr Wandroo at Sandwell, who I think is fantastic (and his team), I tried Velcade for my first Chemo treatment but it didnt work for me, I had a plasmo cell tumour behind my right eye that was biopsied and this confirmed MM but since have had DT-PACE chemo (more powerfull) and the tumour has all but gone, so Monday it is at Heartlands for SCT……

Good to here that long remission is possible, to be quite honest with the tumour and other problems I didnt expect to see Xmas….one day at a time hey….

Kind Regards

[davidbrParticipant]

Hi Compass007

I just wanted to wish you well and I am sure all the thoughts of the Myeloma UK subscribers are with you.

Some days I actually forget that I have Myeloma especially when I am with my Grandchildren. My wife does not understand why I don’t feel sorry for myself. But being able to do what I want and not what someone else wants is the best gift from this horrible cancer.

Best regards David

[compass007Participant]

Hi David, thats a great way to put it, although like I said I am a little aprehensive about the SCT I am generally a positive person and have a “what will be will be” attitude, I am quite young and quite strong, so I hope that will play to my advantage, However I am also mindful of the fact that this cancer doesnt care about age, I know of people in there low thirties that have it, and although no cure as yet I do hope for at least some remission.

 

Take Care

Regards

Les

[janwParticipant]

Hi, I think it’s normal to be apprehensive about your sct. I found myself quite emotional the week prior to my sct in 2010, mainly due to my concerns as to whether I would be able to cope with the whole process, especially the isolation and the side effects of the treatment. I found the staff and care on the Heartland’s sct ward were excellent. They managed my many days of sickness, inabilility to eat, mouth sores, bowel issues, constant tiredness and need to continually sleep without any problems. The individual rooms were well equipped with good steady temperature which was great during the hot summer months, free tv, good wi fi, fridge, with a great choice of food or snacks on request. You will be in safe and experienced hands.

All the best for the next few weeks.
Jan

[compass007Participant]

Thank-you Jan that is very reassuring

Regards

 

Les

[davidainsdaleParticipant]

Hi Les

Hope all goes well with your Stem Cell Transplant. I had mine 2 years ago in Liverpool. I was out in just 16 days and looking back probably had a fairly smooth run through the treatment, up and dressed every day and managed to avoid any mouth problems. The advice on this forum to suck ice cubes or lollipops when you have the melphalan seems to work well.

I had my treatment at 60 years old and prior to diagnosis was reasonably fit and active. I was surprised how long it took me to recover from the stem cell treatment, certainly a couple of months, even now fatigue and stamina are still issues for me. It helps that you have the summer to look forward to and get and about. Just 2 degrees and heavy rain/sleet outside as i write this from the North West!

Hope this helps.

David

[shadyladyParticipant]

Hi Les,

My husband Les, who will be 70 this year, is due any day to have the SCT at Southampton.   There wasn’t a bed available today, so we have to ring every morning until there is one which could take between 2-4 weeks due to infections etc

My husband is taking it in his stride….Me….I’m worried of course!!

Good luck to you

Best wishes….Sonia

 

 

• This reply was modified 8 years, 8 months ago by  shadylady.

[compass007Participant]

Thanks David the recovery and problems going through treatment does seem to vary a lot, as I had DT-PACE chemo which is very powerful I am hoping that this eases the problems with the Melphalan, but I know each individual is different.  Thanks for your advice….this really does help.

 

Kind Regards

 

Les

[compass007Participant]

Hi Sonia, and yes I have the same feeling, However we sometimes forget about the partners of the sufferes who are also suffering (sometimes more).

 

Hope all goes well.

 

Kind Regards

 

Les

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