Hello everyone, Just a question for anyone who has had a SCT. Did you delay your SCT due to personal circumstances? I have been informed by my Dr at Kings that I need to go ahead for a SCT. I don't want to sound ungrateful or go against his professional advice but I have asked if I could have it delayed by at least 3 weeks. This is due to my sister getting married 19 days after the date they have given me for my hospital admission. The Dr has advised against this stating that we should 'get on' with the SCT sooner rather than later. My BCR has gone up from 1.5 to 3 within 3 months. I know mu health is the most important thing but it would mean the world to me if I could attend the wedding, Thank-you G
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Delaying a SCT
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Hi G,
Yes I did delay my SCT...even though I was in late chronic phase when I was diagnosed.This was so that I could take part in a phase 2 clinical trial of imatinib (August 1999) and as it turned out I was fortunate in that I responded well to the drug and was able to return to the UK. I eventually had to have an SCT as I showed signs of imatinib resistance and the other TKIs were not available to me at that time.
However, that is my personal story and there might be other reasons that your doctor recommends that you move without delay to SCT. Nevertheless, I cannot see why you could not wait so you can attend your sister's wedding as this is such an important part of family life. I suggest you ask your doctor exactly why he a need to push ahead- he may be able to explain this in terms of clinical urgency- or it might be for logistical reasons, but you need to be clear about his reasoning, especially as you have said it would mean the world to you if you could attend your sister's wedding. 3 weeks delay does not seem to me to be a reckless decision! especially as your BCR-ABL level is still relatively low at 3%.
Why do you need to have an SCT? Did you not response well to TKI therapy?
Sandy
Hi Sandy,
Thanks for the reply. I have been on most of the TKI's, Imatinib, Dasatinib, Nilotnib and I am currently on Bostunib. My body did respond to the TKI's but my Dr did not think my counts were dropping as much as he would have liked. Bostunib gave me the best percentage with my count coming down to 0.3% which I was really pleased with and then the following test showed an increase to 1.5 which they thought could have been a blip. The following 2 tests showed my counts as 1.5 and then 1.8. The most recent result showed an increase to 3% and based on this the Dr wants me to go ahead with the SCT. He said that to get Ponatinib organised would take too much time firstly agreeing the funding and then to confirm if I qualify for it as my bone marrow has not show any mutations as of yet. The Dr did say that he would prefer the SCT to be done asap as he wants to push ahead that he does not want my recovery to go into the winter months due to infections. Like I said before I don't want to sound ungrateful or to question his decision as I am in a great position with having sibling donor.
I have asked the Dr to consider this again and hopefully should get an answer soon,
Thanks again
G
Hi,
I'm very sorry to hear that you did not respond well to treatment and you are now going to have a SCT. I really hope that all will go well and you will make an excellent recovery. I can't really advise you on delaying the treatment to allow you to go to your sister's wedding - I just know that, if I were in your situation, I would do the same. My way of coping with CML is trying to minimize its impact on my life and carrying on doing all I was doing before (and more!)
What surprises (and concerns) me more is the very different approach to treatment in different hospitals. As I mentioned in my previous comment to your post I'm in a very similar situation - on imatinib, nilotinib and now on bosutinib (500mg), PCR down to 0.22% and now increasing to 0.8% and 1.5% in May. However I had no comment or response whatsoever to these potentially worrying results. I asked to be referred permanently to Leeds rather than being in shared care with York and my next appointment is on Friday, 3 months after last check up as usual.
Both Kings and Leeds are Centres of excellence for CML and Dr Smith is a leader clinician in the field, but obviously their views seem to differ. I can't compare your case to mine - I'm probably older than you (almost 60), had 2 mutational analysis done that showed no mutations, I can tolerate very well all the TKIs I've tried and I have no other health problems. I have also no sibling donor so SCT would be much more problematic. In a way the more relaxed, minimal intervention approach suits me fine, but it would be good to have a bit more feedback on the results.
I hope you can make it to your sister's wedding
Best wishes
Luisa
Hello again Luisa,
I asked the Dr again about the delay and he has said that he does not want to wait and that I have to go ahead with the SCT and I have have to respect his professional advice and go ahead with it. That does mean that I will sadly miss the wedding which breaks my heart. Since being diagnosed 2 and a half years ago I have lived my life without CML being the main focus but on this occasion I have no choice but to focus on it and on getting better.
I do agree with what you have said with the hospitals and Dr's having different approaches on when to decide on SCT for people depending on their levels. I am 37 years old and as I have no other TKI's that are an option for me SCT is the only choice.
Will Dasatinib be an option for you?
I do hope that your levels settle down and in the situation of an SCT that you find a suitable donor.
I am being admitted on the 10 Aug and I had all my pre transplant tests carried out today, bloods, bone marrow, ECG etc
I am very anxious about it but have to remain positive especially by reading the positive and inspiring stories people have told and written.
Best wishes
G
Hi G,
I am so sorry your doctor will not relent on delaying your admission for SCT. As you say- it will 'break your heart' not to be at your sister's wedding and I think he might have had some consideration for this. I do understand that you want to show respect for the advice you have been given- but it is you who will be going through the transplant not the clinician. Is there any way you can make him understand just how important this is for you? SCT's are challenging and to get through it you need to be emotionally strong, as much as is possible, as well as physically fit. I had an SCT during the winter months and I don't think I was anymore susceptible to infection that I would have been in the summer months. After all, most problems occur from fungal/bacteria that we are already living with rather than those that we might be exposed to once the donors cells take up residence in your marrow and you are out of isolation.
Are you planning to undergo a full (traditional) transplant or have you been offered a reduced intensity transplant?
Sandy
Hi, been reading this thread and I feel sad you have to miss the wedding. Just a thought, but is there any way a 'techie' person could arrange a live screen for you at hospital, I was thinking ipad with face time or similar, so you could make the best of the bad circumstances and 'virtually' be there. I am sure your sister will be as upset as you are and will not wish you to miss her big day. Wishing you all the very best for a successful transplant
Hi,
Hope you are coping well with what must be a very anxious time. I know that the specialists have the knowledge and the experience and act in your best interest, but have you thought about getting a second opinion? I was in Leeds yesterday and the Dr assured me that even if my response is far from optimal 2 1/2 years after diagnosis, the risk of progression is very small. This is based on the data from several retrospective studies with large number of patients. He's obviously monitoring me carefully and I will have soon the results of another pcr and mutation analysis. If levels are up again I will try dasatinib that hopefully will become available with no restrictions from September. I mentioned your post and he was very surprised. He said that, unless you have chromosomal abnormalities or other complications I'm not aware of, such a quick decision to do a STC is rather an overreaction. He also said that Kings is not a centre of excellence for cml.
I don't want to worry you even more, but it's your life and I think you have the right to ask all the questions and explore all the possible alternative.
Good luck and best wishes whatever you decide to do
Luisa
In my case not a stem cell transplant. Rather I had a matched unrelated bone marrow transplant. It was done at Leeds. My daughter was due to get married 5 months ahead and it was pretty obvious that I was either going to be at the worst point post transplant or dead at the time of her wedding. For sure I wasn't going to be able to attend it.
In my case I was seriously ill and this was some time ago when there was little else available for treatment. Though I was on interferon and a cocktail of other stuff besides.
When we went to the meeting at the hospital to find out exactly what would happen and when we had the realisation that I'd not be at the wedding. The advice was to press on as soon as possible though I did have a short withdrawal period from the drugs I was on. Suffice it to say my daughter was amazing and without asking she phoned me the following evening and told me that day she'd just rearranged the whole of her wedding and got everything sorted so she could get married just 4 weeks out. She said the only thing she'd not managed to do was find another photographer and we did that the next day.
In my case I wouldn't have cancelled or delayed my transplant but for me I was on borrowed time anyway and it was just too important. Furthermore it's not easy getting a bed in a transplant unit though that wasn't a consideration for me. It was solely about wanting to get on with treatment and wanting to live.
But you must weigh up all the options and discuss with your consultant and with your sister and do what's right for you.
Hi,
I am planning for a reduced intensity SCT.
Hello again,
I'm good thanks but still very anxious as it's not long now before I'm admitted. Your thread has made me think about it all this evening and the fact that the SCT will be life changing no matter how I look at it. It's interesting what your Dr thought about my case. I have had all sorts of thoughts this evening including 'what is the urgency in having the SCT for me? The Dr told me that the chances of not surviving it would be 90% but in a copy of a letter addressed to my local Dr he says it is 85%. I know it's only a 5% difference but a huge one if we are talking about death from an a transplant. Do I get a second opinion?
I have read all the encouraging stories of people who have had the transplant and this is what keeps me positive about it all.
I'm really worried about infections I might pick up post transplant after being discharged.
G
Hi G,
I am glad you are planning a reduced intensity SCT. This is the protocol I had but with post transplant TKI therapy to ensure effective control of any residual disease and keep it at a low enough molecular level until I reached at least 12 months from SCT and I could safely have DLI (donor lymphocyte infusion) with my brothers lymphocytes. This last procedure -DLI- is thought to be the 'curative' bit of RIC SCT. It took around 2 years from start to finish and even though I had an imatinib resistant mutation before transplant, by the time I had all the conditioning chemotherapy that resistant clone was gone. So post transplant I responded to imatinib well enough for it to keep me in MR until I could safely start DLI. Even so, PCR tests at Hammersmith are so sensitive that they can still find evidence of Bcr-Abl but it seems my new immune system can keep it in check- it remains fairly stable at 0.002%. So 'cure' from SCT depends on how hard you look for evidence of the disease.
If bosutinib had been around when the IM resistant mutation I had surfaced, I would have responded well to that drug and would not have had to go through transplant. I think- all in all- I am OK with how things turned out, and I would stress that RIC SCTs are much safer than the traditional protocol. Don't worry too much about infections- as I was told, most problems occur with those bacteria and fungal infections that we already live with. I had no problems with either- you just need to be careful for a while.
When do you plan to go to transplant? If I were you, I would certainly try to get a second opinion. I can email you privately with details of who you might see and how you could set that up. Let me know if you would like me to do that.
On the question of you fathering a child on bosutinb- although there is currently no data on this, the broad consensus is that it is safe for men to father children while on treatment with TKIs.
Sandy