Hello fellow CMLrs
I was DX last August aged 38 and have been on 400mg of Glivec ever since and have responded very well and am down to PCR 0.02, for this I am very grateful. I have however grown very interested in the mini transplant as I have a sibling full match. I would be grateful to hear from anyone that has elected to have the mini transplant. I know that these transplants are in the early stages but I believe the results have been very good (Sandy Craine is testament to that) and just wondered if anyone has had one through choice, rather than necessity. I ask this question as, common sense tells me to wait and see how I go with Glivec, but my gut tells me to go with the transplant and I just wondered if anyone else is battling, or has battled with this dilemma.
Thanks.
Best wishes.
Linda
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Glivec V Mini Transplant
Dear Linda,
There is a saying "don't fix what ain't broke". You do have a choice and this choice needs to be made after very careful consideration of all the facts.
Firstly, where are you being treated.
Yes a transplant can be a "cure" however there are risks (less so with a mini)and your consultant should be able to tell you what they are. Has your PCR leveled out?
Also the treatment leading up to and after the transplant may have unwanted side effects.
you will get some replies to your question but take the time to come to a decision. Do not rush into it.
You are responding well to Glivec. I have taken nearly 3 years to get to a PCR of 0.07. My consultant at HH says he would very happy for me to have that PCR for the next 25 years or so. I will be 50 this year.
I do not have a sibling match but do have 2, non related 9/10 matches on the register. I hope I will never have to use them.
Please feel email me so that we can have a private chat on steven.carol@ntlworld.com
As a fellow CML'er I would wait and see especially with a PCR like yours in such a short space of time.
Looking forward to hearing from you.
Regards
Steven D
YAHOOO!!! YIPPEEE!!!
Number 1062 in the Zero Club
Zavie
Linda, could you please email me privatly. Thanks
Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca
Hi Linda
I have a dilemma which has some similarities to you. I was diagnosed 2 years ago and put on glivec immediately. I had a very good response to it but unfortunately couldn't tolerate it - numerous side effects. I changed to BMS which also worked incredibly well but again I am intolerant to it. I had 5+ months without treatment, gosh did I feel so well!
I am a little older than you, with 3 teenagers and a sibling match and my consultant said that I needed to have the BMT. His thinking was that with so many side effects eventually the medications would do some permanent damage to me.
I was also given the opportunity to try AMN, after a lot of heartache and tears I turned down this opportunity and I have decided to go for the BMT. I will be having the mini at some point in the autumn.
It has been my decision to delay it until then - lots of family events before then.
This is such a hard and personal decision. The long and short of it is that the medications do work well, but for how long and at what cost is another question. Then there is the side effects and costs of the BMT. Not easy.
My only advice would be to make sure that you are under one of the major centres if you have the transplant done.
I would be interested to hear how things go for you.
Susan
Since I have actually had a transplant I would like to come and give my 4 pennyworth on the subject. Transplant was not my decision I hasten to add, I would have happily stayed on drug therapy for the rest of my life had I not developed a secondary leukaemia [very rare].
From reading the posts above I get the feeling that transplant is being looked at as a fairly easy option. Transplant is not a picnic in the park, it carries a certain number of life threatening risks not only in the conditioning procedure itself but post transplant complications.
Transplant has its place in the treatment of CML, it offers a cure to the young and sometimes the older ones like Sandy and myself get lucky, very lucky in my case, and we end up PCRU.
It is a very personal choice, we have just lost a friend who made such a choice despite doing well on Glivec, it is very sad. I would ask anyone doing well on drug therapy [with a PCR of 0.0 something] to think long and hard and to arm themselves with all the facts before launching themselves down that road. The easy option is drug therapy not transplant.
With best wishes with your decisions, the above are my personal views as someone who has had a transplant and of living with CML since Feb 99.
Elizabeth
I wholeheartedly agree with Elizabeth
Carol and I have also lost the same friend as Elizabeth recently and know of several other friends and acquaintances who are having difficulties post transplant.
I think some people can be a little misguided.
Some people react very well to Glivec but cannot tolerate fairly moderate side effects which most of us would be pleased to have. Some people also react well to Dasatinib when switched but again with some side effects. ALL medications has some sort of side effect including paracetamol and aspirin.
Transplants and all that is entailed is no walk in the park. The actual transplant of the donor cells itself is a piece of cake takes about 40 mins to transfuse into the body. As I said earlier its the medications given before and after the transplant which can be very very nasty. GVHD (Graft versus Host Disease) which the host body needs so that it can graft can also be very unpleasant and also life threatening.
A transplant is not necessarily a “cure” especially if you have other things going on.
You should consult with the hierarchy in the business and those are the Doctors who sleep and drink CML at those very specialist hospitals where CML is an everyday occurrence.
Good luck with what ever you decide. We are always here to help and support you.
These are my personal views and feelings.
Steven D
hi Linda,
as you can see from reading the above posts, the subject of whether to go for transplant is an emotive one.
my personal perspective on this is....
you should consider this option only if:
you have..
1. a HLA matched sibling donor (pref. male or a female that has not had children)
2. you are fit and generally healthy (not counting CML of course) with at least 14lbs extra fat.
3. you have responded well to Glivec which means that your 'leukaemic load' is as low as it can get.
4. you are being treated at a centre of excellence for CML with an experienced transplant team.
5. you are aware of the whole procedure, understand what each chemotherapeutic drug does and why it is used and know what effects to expect at each stage.
6. you have a clear strategy to get you through the 20 days or so (sometime less) whilst you wait for engraftement.
7. you have determination and a belief in your ability to deal with a lot of fear, not only in yourself but in those close to you.
8. at your 'core' you KNOW you will get through and that you can deal with the chemotherapy side effects.
although i did have a complication in that i had an identified Glivec resistant mutation (y253H)i took a long time to make my decision.
i thought hard about it and tried to understand my own fears (and those of others) about surviving. i consulted both the doctors that were running the mini-allo + glivec study (Eduardo Olaviarra and Charlie Craddock)
only after asking a lot of questions did i truly did feel that this was the right choice for me...
given all the points i make above (and i can think of some more) i would stress that in the end, it is your choice and that is how it should be.
there are risks in anything we do.
i cannot tell you what you should do, nor should i, but i would urge you to consider two questions...
what sort of transplant and do i understand the rationale?
at which centre and what is their track record?
i know its hard for you Linda, but you do have the time to consider this without pressure, especially as your donor is related and may be persuaded to have their cells collected and banked as mine did.
my brothers cells were kept waiting int he 'fridge' from '99 until October 2003
sandy C ;o)
Dear Linda
I was DX July 04 and had a full transplant in Feb 06. I did have a choice and could have stayed on Glivec but wanted to have a transplant and a "cure". However, it was only when my consultant changed his view and recommended one that I finally went ahead. I would not have gone ahead against their advice.
As long as you stay in the Chronic phase and stay healthy, then you needn't rush any decision. Nobody can be certain what the best thing to do is but I was happy because I had made a reasonably informed decision with a doctor that I trusted.
I hope this helps
David
Just to say thanks for all your very helpful comments. Despite my initial reaction to my good PCR making me feel trapped I am just going to see how things go for a while. I am luckily with a wonderful doctor, Prof Clarke at Liverpool, who I know will always have my best interest at heart and whom I have tremendous faith. So I will just try to relax for now and 'Please God' acheive good PCR results for a while.
Best wishes to you all.
Linda
hi everyone, iv never done this before, i usually read everyone else,s. my husband was diagnosed with cml last july age 42. he was put on gleevac straight away, the usual dose 400,& is responding well,except that now he is suffering from terrible cramps &back pain,they have told him the gleevac is attacking his kidneys, has anyone else had this problem? & if so are there any natural remedies that will help.thanks Belinda.
I'm just saying hi to you and your husband. I dont have any useful advice apart from the usual one about cramps being part and parcel of the leukaemia/Glivec experience, but drinking plenty of water with the medicine and having it at a mealtime does seem to help lessen the cramps.I hope you get some helpful replies - there are so many knowledgeable people who use this website! Thinking of you both.
kestrel
Hi folks,
I'm a new addition to the club and am having all the usual difficulties in processing what is happening to us. I've started my glivec treatment and things are going well although it's very early. My sister, god bless her, is champing at the bit to test for a match. Like you Linda, I'm trying to get information on the best way forward so have a number of questions. Sorry to be so 'structured' but
1. Is it the patients choice about whether to stick with the meds or proceed to transplant - clearly it would be un advisable to go against advice.
2. What is a mini- transplant? And what is the success rate?
3. After a transplant what are the chances of the cml returning?
4. My sister is concerned that something might happen to her so was wondering if she can request to be tested for a match and have some cells frozen?
5. I am 44 years of age and feel fit and healthy. Clearly as I get older I' ll be less able to withstand the trauma of a transplant. With this in mind do you think it is worth thinking about asking for a transplant?
All thoughts on this matter will be greatly received so thank you in advance
Take care, best wishes
Dom
Hello Dom,
I'll offer some initial advice and I'm sure Sandy will be along to give her expert words of wisdom.
Unless you have a serious problem responding to the medication(s) then there is no real reason why you should be contemplating a transplant. As you are new to the club, I doubt you're having med issues (if you are discuss the problems with your consultant). We are so lucky as CML patients to have access to up to 5 TKI drugs, meaning the probability of finding a medication that works well is very good. You have started on Glivec which is a well proven 1st generation TKI. I can understand your sister's desire for you to be 'cured' but the reality is that the trauma associated with a transplant is significant and you will likely still have to deal with graft versus host disease symptoms - do some research on this.
It may give you and your sister peace of mind to be match tested so if everything does go really really wrong you know you have a match. Transplant should be considered as an absolute last resort only if you have failed all the TKIs. You will live a pretty normal life on Glivec and chances are a cure or meds with even better efficacy are only round the corner (5-10) years. The patient seminar in Oxford last year learned that if you hit the major treatment milestones (taking TKIs) of complete cytogenetic response and major molecular response in reasonable time frames (ELNET GUIDELINES) you will likely live a normal lifespan commensurate with the rest of the population.
My previous doc was of the 'old school' transplant is the answer brigade. My new doc is much younger and agrees transplant should now only be used in last resort.
Yesterday I popped my pills (tasigna) as normal, went about my daily business and then went rock climbing for 2.5 hours - tell me again why a transplant is the answer? :-)
Best wishes
Chris
Hi Dom and welcome,
Chris has more or less spelled it out very clearly... in the era of 5 TKis, transplantation for CML in chronic phase is indeed a last resort.
Being fit and healthy may help you 'endure' a transplant but GVHD can be a serious and life threatening condition caused by your donor cells reaction to you! Donor cells can mount a serious attack on your tissues as they detect them 'alien'- which in a sense they are. It really is a bit of a lottery. So called mini transplants- or reduced intensity SCTs- have the same rates of GVHD. They are much easier to 'endure' (I had one so I know) but there is no guarantee they
a. they are curative
or
b. you will not suffer chronic or acute GVHD
TKI therapies have revolutionised the prognosis of CML in chronic phase. Imatinib is a good drug and has saved many thousands of lives over the last decade or so... 2nd generation TKis are proving to be even better and should imatinib not get you to where you need to be within the next 6 months.. or side effects affect you quality of life... then you have the choice to change therapy to nilotinib, and if that does not suit you as an individual then there is dasatinib, bosutinib and ponatinib.
Your main concern should be that you are treated at the right place- preferably a centre that treats other CML patients- most of the major cities in the UK have centres of excellence that you can be referred to.
As Chris says... your sister can be HLA matched, although it is very expensive to harvest donor cells and keep them just in case they may be needed at some future date.
Transplantation does not guarantee a cure- although it is the only known possible cure. Times are moving quickly and in the genome era there is a probable effective cure for the majority out there somewhere. Meanwhile, living with CML is something that most of us do very well. As Chris has described- he doesn't let it hold him back.
If you have any further questions then please ask,
Sandy
A big thanks to Chris and Sandy for keeping me right. I know we all have a great deal to be thankful for, and I know that over time I will re-adjust to the new reality. It has been really positive reading through the various posts and it is great to see such positivity within the group. I take all your points on board re transplants and appreciate your time as I'm sure you' ll have answered this question many times! If I could ask one more thing it would be to find out about fathering on gleevic. My wife and I were in the process of trying for a baby when I received my diagnosis. My consultant arranged for the necessary things to be done at the fertility clinic and we are waiting for our first visit together. However I read a post that suggested some doubt had been cast over whether sperm is affected. Is there any up to date info on this issue that you can point me in the directions of.
Many thanks again
Dom
Believe me if a mini transplant is even a tenth as bad as a MUD transplant, it's going to make being on glivec seem like a walk in the park.
My transplant was 19 years ago. I didn't have the option of glivec. Then I still needed another solution and I went on glivec on trial over 13 years ago.
The side effects of transplant remain with me though. Chronic chest problems either from total body irradiation or from post transplant PCP pneumonia! A blind spot because of CMV retinitis. Just had cataracts done in both eyes too. Etc etc etc.
Glivec is a wonder drug and you really don't want to think it's side effects are worth avoiding by having a transplant. A transplant can easily kill you and for sure you'll be very very very ill.