This topic contains 9 replies, has 8 voices, and was last updated by 
comfortablynumb 13 years, 11 months ago.
Hi,
My Dad was diagnosed with MM in June. He is currently on CDT and was called to go for his first consultation for SCT today. He has had a number of set backs over the past few months (sepsis and obstructed bowels) from side affects with CDT but has picked himself up and remained very positive throughout. Earlier today he had a consultation on SCT and is due to start treatment in January. The consultant was quite blunt and explained that he was high risk to infection during the transplant and that a simple infection could lead to death. He was also very blunt in saying that it might not work. I understand everything the consultant has said is fact and we had read up on the risks but it has given my Mum and Dad a real scare, and seems to have knocked them back.
I have read a lot on SCT and went through it with both my Mum and Dad and tried to put things in to perspective for them but I know they (and myself) are finding it all very daunting. It would be really good to hear from others first-hand so that we have a better understanding of what we are up against.
Much appreciated!!
Arlene
Dear Arlene,
How old is your dad? I know that the word 'sepsis' means infection, so your father's doctors have already had to meet the challenge of fighting an infection while he was on treatment. How did your dad respond to antibiotics?
For most people there is a very low mortality rate for ASCT. As far as I know it is possible to treat infections with antibiotics even when someone's immune system is suppressed. I've had a transplant and coped well even though my lung was accidentally punctured while my line was put in, and I guess that this could have made me more susceptible to infection. I think the questions you need to ask the medical team could include whether there's any reason why antibiotics couldn't be given to your father after transplant or whether they might be less effective for him than for other people.
I'm sure that if the medical team are concerned then they would pay very close attention to your father and they wouldn't send him home too early.
Good luck,
Eva
Hi Arlene
It is my mum who has myeloma. She was diagnosed in January 2009 at the age of 65. After her first cycle of chemo she became neutropenic and got an infection. She was very poorly and was in ITU with acute renal failure. Luckily she made a good recovery. After more chemo, she had her SCT in September 2009 and actually sailed through it. She stayed in the hotel for most of the time and only went into hospital for a few days but remained very well and fully self caring throughout. She had a good response and her paraproteins were too faint to quantify. Unfortunately the myeloma returned in July 2010 and she is now on velcade. Some people remain in remission for much longer, you just never know. She is doing well on velcade and has returned to doing almost everything she enjoys doing.
Like you, we were very worried about having the SCT due to the risks but she did very well and I guess its weighing up the risks against the hope of having a long remission.
Good luck with whatever you decide.
Take care
Georgina
Hi Arlene its understandable you should all be anxious about your dads sct , I certainly was ! Doctors have to warn us of the worst possible outcome , but as Eva has said the majority of us cope with an auto sct remarkably well Get your mum and dad to talk to the specialist nurse about their fears , she or he will be the best person to reassure them Different hospitals have their own procedures but although you are in an solation ward afterwards you can have visitors , just not loads It doesnt take long to adjust to the precautions you need to take when your immune system is compromised , its mainly common sense and asking any visitors to stay away if they are the least bit unwell . I have no regrets about my sct which gave me 18 months partial remission and it is so worth going through it to regain some normality in your life After xmas I will be having a second sct using frozen cells collected last year Good luck to your dad and please give him my best wishes Dont forget there is support here for you all so shout if you need answers and someone will be able to help Bridget
Hi Arlene
My husband was 53 when diagnosed in 2008. He had a SCT in the summer of 2009 and has been very well since his transplant and is in total remission. He is due to see his oncologist in a week or so and I always panic beforehand but other than that we get on with our lives.
He has damage to his spine that was caused by mm before the diagnosis but he still walks for miles every day (started with crutches, then a stick and now nothing)
When Stephen had his SCT I wrote a kind of blog/diary thing on the old site I think you can still pick it up on this link
http://www.myeloma.org.uk/Page.aspx?pid=280&messageid786=2890&tid786=459&dgs786=3
If not, if you are interested, email me at bodgeit2@aol.com and I will forward it to you.
Good luck to your dad I hope you all have a great christmas and that your dad can look forward to a new year with the prospect of a long and healthy remission
Kind regards Gill x
Hi everyone,
Eva, he was 58 when diagnosed. He developed Neutropenic sepis 2 months into his treatment but responded well to the antibiotics. Hopefully, as you say, this is good indication on how well he can be treated for infection.
Thanks very much for all your comments. They have been really helpful and given us a lot to think and ask about. I have passed them on to my family who have found your courage and compassion very inspiring.
We are going to contact a specialist nurse so that she can further give an understanding of the procedures unique to the hospital.
My Dad is starting to look positively towards the future, thanks to your feedback, and especially your blog Gill. I realise we have a long road to go yet, but at least now we have an idea of what we are facing. Going to start training my Dad on using the internet (he is a technophobe!!!) – might even see him on here writing his own blog!!!
Like your husband Gill, he has damage to his spine which was what indicated MM initially. He has always been very active and had a very heavy lifting job. He is no longer able to work, but still goes out walking which really lifts his spirits. We were initially very protective and would have wrapped him in cotton wool if we could have, but found that the more active he is (and the less nagging from us!!), the happier he is. We realise he has gotten to know his limits. I think what we struggled with yesterday was that he has been quite upbeat and positive throughout and, selfishly, it scares us if he gets upset or down. Goes back to us thinking Dad is always the protector!!!! We aren't the ones going through it so we can't expect him not to be scared or apprehensive but if we can give him information from here which will go some way to alleviate any fears he has, that's a big positive.
Again, am really grateful for you comments. Have introduced my Mum and 2 sisters to the site and they have gotten a lot from it also.
Will keep you posted with progress.
Arlene xxx
Hi Gill,
Apologies, still trying to find my way around. I replied above!!
xx
Hi Arlene
I am 55 years young8-) and had my Stem Cell Transplant on the 3rd December 2009 (yep today my stems are a year old:-D ) and am doing great.
I had no problem deciding to go ahead with the Transplant, and at this moment feel it was the best decision I made EVER 😀
Like your dad my job was heavy work so i could not go back to it 🙁 but my Boss gave me a job which was light dutie's:-D and now I do 10 hour shifts (light dutie's) but when the light work ends i know i will have to pack in the job:-S but if they let me do it for 10 years then I can retire:-D
But hey one day at a time ha ha
Tom "Onwards and Upwards" xx
Please read my blog. Musing from ward 9. I am 68 and was given the same talk. My wife and I decided to go ahead, my wife reluctantly I think.
Kindest regards
David
Arlene. They told me there was a risk of death (with having SCT).
They tell you that because they have to, but it does shake you up.
I suppose it's a bit like doing a parachute jump and the instructor saying "Of course, it is possible the parachute won't open and you'll be squished". It's stating the bleeding obvious.
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