I am a 60 year old suffering from CMML I was diagnosed 4 years ago and have been on Hydroximide for the last two years. My leukaemia has now gone in to the accelaration stage and I have been told that I could have a stem cell transplant with my brother who is a match as a donor. Has any one got any info on SCT or had it done.
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Stem Cell Transplant
Hi,
There are many of us that have had transplants on here. I'll be a year post transplant on the 30th of this month and have been clear of CML since the transplant. All my blood counts are now within normal ranges and I'll be having my childhood immunisations once again before christmas. Try and keep your chin up and remain positive. I had a full allo transplant with a sibling donor at 24 and am feeling better than I can remember.
If you have any questions about anything please ask.
Take care,
Martyn
Hi Martyn I've not been on the site for some time, trying to get to grips with the fact that I will be having a SCT end of Jan, early Feb. One of my brothers is a match which is good news for me. I have been transferred from my local hospital to Manchester Royal - Dr Guy Lucas (anyone else attending his clinic pelase get in touch with me). After 14 months on Glivec its not doing its job anymore and rather than trying other treatments Dr Lucas has put me forward for the SCT (I am 51 years old. I am very afraid - although to outsiders I seem perfectly fine - I laugh and joke about loosing my hair with the chemo/radiation and try and be brave in front of my two beautiful daughters (19 and 16), and my husband - who is very quiet at the moment - a man of few words! butI really do not know what to expect from this transplant. Any advice, however small would be most appreciative.
Thanks
Sue Wilson
Sue
I will be very interested to hear how well you get on.
I am probably facing the same at some point in the New Year.
Although both glivec and bms work very well for me I just can't tolerate the medication! I, too, have a match and yes having 3 teenagers makes it all very hard.
You will be fine!!
regards
Susan
Well we are about to join you all in sept when my wife goes in for a bmt, her brother is a match and she seems fine about it all infact i think im worse than her but as we couldnt get dissatinib in Newcastle there are not a lot of options. Anyway just thought i had to tell someone cause the bottling up is beginning to get to me cheers and thankyou all for the information you have given on this site Paul.
Hi Folks - I'm new to this group but had a mini bmt in december 2004 after developing secondary resistance to glivec. BMT was carried out at Kings college hospital from an unrelated donor. I am currently well and 100% donor chimerism and PCRU. If I can help anyone please feel free to ask questions (I was 52 years old at time of transplant).
Russ
Hi Russ and well done on your recovery I hope it continues for a lifetime. We have just heard that the prefered route for my wife is a mini transplant instead of the full blown version. Although we are pleased with this im still concerned that cml may raise its head again in years to come. Comments would be great cheers everyone and thanx .Paul.
Paul,
I was 50 years old at diagnosis which I was told was really the upper age limit for a full blown transplant and that a mini was a better option if drugs didnt work (they didnt). With careful monitoring of chimerism (the percentage of donor cells in bone marrow and blood) and use of PCR tests very very good results are obtained with mini's - don't be surprised if your wife needs some dli's (donor lymphocyte infusions) post transplant to get a good result (I had 2 one at seven months post transplant and one at ten months). Even if CML does 'raise its head in years to come treatmant can still be done with another dli. - I am VERY positive about my position and from what I've learned a full blown transplant is a very testing procedure and one I wouldnt have wanted to undergo at 52 years old!.
Best wishes to you both and do feel free to ask anything.
Thankyou for rapid response,we both feel better after speaking to the doctor today, who explained the pros and cons, anyway my wife is going in tomorow 12/09/07 @ 2.00 and 1st chemo later that day. How long if at all will she feel awful and what am I to expect during my 1st visits cheers all, your all a great help.
Paul - the chemo gave me a dull headache almost continuously which went as soon as the chemo stopped but the ache wasnt too bad. I also had nausea on and off - they will give anti sickness drugs (probably domperidone) but if the nausea persists your wife should ask for more anti-nausea drugs as they will have several. I felt pretty tired most of the time but I always felt better if I made the effort to get up and have a shower in the mornings. The really important thing is to tell the nurses and doctors exactly how she feels - they can help with a lot of it - dont suffer in silence. You may find your wife doent want to talk much some days - I didnt. I also found noise very anoying and people bumping into the bed anoyed me - I felt i didnt want to be shaken about! I assume they have told you you mustnt visit if you are unwell and once her white cell count has fallen be very careful about hand washing/contact etc .Post transplant she will be tired and it takes weeks to recover but the nausea etc should go quickly.
These are my personal experiences and no doubt will be different for you.
My best wishes
Russ
Well im sorry i havnt been updating you guys as ive just about lived in the RVi for the last 3 weeks. But today my wife is home and feeling great 20 days after admission. She has had an excellent response and her level now is 1.4 although we know this will dip before it gets better.She has to visit outpatients twice a week to be closely monitered , but hey how easy is that. Once again thankyou all for your support Paul.
Paul - Sorry but the tiredness is a very individual thing - dont expect too much until her Hgb count gets nearer to 12. I found that I was very tired for about 2 months post transplant and then it gradually improved and I was pretty normal at 6 months. I still have the odd 'weary' day once every 2 months and I know of several transplant patients who experience the same. The best advice I can give is to sleep when she's tired and just go with the flow.
Otherwise sounds like she's doing well.
Best wishes to you both.
Russ
Dear all,
I am a 48 yr old English Mother of 4, DX may 24 this year. I am living in Florida and had been on the cml chat site over here....don't get me wrong I love American's but I was overjoyed to find you all, it feels like being home!!!
Donna Berry (nee Hawkins)
Surrey
I am under the care of MD Anderson but am seriously thinking about coming home, how is NH as far as CML goes?
Hello Donna
I can only speak for my local heamatologist (Haywards Heath) and Kings College Hospital in London where I have been cared for. They are both first class - I was given Glivec as soon as it was available and it is now the first line treatment in the UK. I developed resistance to glivec and after a few tries at increasing the dose I had a matched unrelated mini transplant at Kings - after a few complications I am now 100% donor and pcru. I cannot praise Kings highly enough although there are other good centres (Hammersmith,Glasgow etc) I'm not sure where you would come back to but if it's Surrey then Kings is one of the teritiary care centres for the south east so get referred to there by a GP.
Happy to answer more questions if you have them.
Russ
ps my transplant was 3 years ago.