I’ve recently been diagnosed with ALL pH+ and was told my only hope for a possible cure was to have chemotherapy then stem cell transplant. I’m currently on phase 2 of my chemotherapy and already wondering if my current side effects will be life long. I hear possitive and negative stories about stem cell transplant and I’m struggling to decide if it is worth going ahead with transplant or enjoying what life I have left using some alternative treatments. I’m scared for my children to see me ill all the time or have to witness me going through it all again if I relapsed. I know what it’s like to see a parent ill all the time, I don’t know what’s best for them or me. Did anyone have the same worries? Obviously I would love quality and quantity but is it possible?
Hi Goody, a great big welcome and you ask the million dollar questions which I think are getting even harder to speculate on now because treatment options are updated so frequently now and I think ( I am not medically trained) that we are now being looked at as very complex, unique beings and lower dosage targeted treatment options offered accordingly. I do however think that I have to make decisions that are best for me and not others. As you say you have only recently been diagnosed so if you are anything like me you will still be in complete shock and just coming to terms with this life changing news. At that time I was like a rabbit caught in the headlights and I cannot imagine making a logical decision. Don’t forget the Bloodwise support services are there for you and all their details are above. Take care of yourself and please keep posting how you are and how you are feeling.
Thanks for the reply Erica. Yip all very new to this…I had changed everything in my life after my dad was ill with cancer I hoped I would never get it and I did …I feel like there is no way of stopping it and now after all this treatment I’m likely to get other cancers… it just seems madness. I want to try for my children although I want to feel like I’m doing it for myself. Right now I don’t feel like that at all. I’m waiting to speak with a psychologist, which could take months before I’m seen. By then I’ll of hopefuly sorted my head out myself …
Hi Goody, Yes, it is madness and surreal, but I have found, although so, so difficult that I have to just try to keep it in the dayish with the facts that I have now. You say you have children, have you told them? I wonder if you have Mcmillan nurses at your hospital as I have heard they can be very helpful getting you things like counselling and how to answer your children’s questions and any other concerns you might have, even financial issues. As I said before the Bloodwise support services are there for you and their details are above. Please do use this site as we are all there to support you. Me and my head are a terrible combination sometimes, the darkest hour is just before dawn and all that. Perhaps we are the ones that understand more because we have all been were you are now, perhaps not exactly medically, but with the fears, what if’s, thoughts and feelings. Take care.
Thanks Erica, I have contacted Macmillan and they sent me some useful booklets on how to talk to the kids about everything. I will maybe go in to talk to someone soon in the mean time. Wish you all the best x
Hello, and welcome to the forum! I am so sorry to hear you’ve been diagnosed with ALL and you are facing making decisions about your treatment, I can only imagine how hard it is for you.
Deciding whether to go for a stem cell transplant decision is a big one, and I would encourage you to talk to your treatment and explore your options, including what may happen if you don’t have the transplant.
We have a booklet on stem cell transplants here https://bloodwise.org.uk/sites/default/files/documents/bloodwise-stem-cell-bone-marrow-transplants-booklet.pdf and if you want to talk any of it over or have questions please do know our support services are here for you.
I don’t know how old your children are, but The Fruitfly Collective may have some good resources and links to things to help you support them (books/activities/videos etc). https://parents.fruitflycollective.com/supporting-parents-who-have-cancer/other-resources-page/
We are here for you. Thank you for sharing your worries and questions with us.
11 years ago exactly I was going thro my 1st set of 11 chemo having been diagnosed with AML @ 48. I was actually waiting for my bloods to come up high enough to be let out! I was lucky & went into remission after this first series, I had to go on & have the other 2 sessions but at this point was told all my 6 & 9 chromosomes had swapped places & I had the worst prognosis of the Leukaemia returning. I was told the next step would be a SCT!
Luckily my little brother was an excellent match. I don’t know if you’re having your own cells or a donors.
Well that will be 11 yrs on 7th August. It was tough! They’ll tell you all the stats for survival & recovery, which have changed since I went thro it. I wanted to hang around to watch my 21yr old son & 18yr old daughter grow up & flesh out their lives. I was determined to stay on the planet.
I think the SCT was worth all the side effects & the solitary confinement followed by a gradual emergence into normal life. I was out of the social whirl for 18 months or so. I came out from solitary in September & our first Christmas had to be just the 4 of us but by the next one I cooked for 16 of us & was allowed a glass of bubbles.
My son got married last month, & had my 10 month old grandson christened at the same time! My daughter & her boyfriend are buying their first home.
I have been on 15 cruises in the last 10 years, flown to stay with a girlfriend who lives in Dubai. Our first flight was to Portugal 2 yrs after SCT & a week self-catering.
All I can say is listen to what the team tell you & stick to their guidelines. Just remember, should you have the transplant, its baby steps & take lots of rest.
It depends on the prognosis you are being offered, but good luck.
Wow, Corfu and @Goody so much has gone on for you, Corfu, in the last 11 years and thanks so much for your honest account of how it has been for you and as you say everyone is different and treatment programmes have changed so much in the last 11 years. Take care Goody and keep posting what is going on and how it is for you.
Thanks Dawn, some usefull links. Will take some time looking through!
You have been through alot to get where you are but sounds worth it. My brother is not a match so waiting to hear if I have any on register. Fingers crossed! Wish you all the best x
Dear goody, this is very early days for you and although I totally understand your desire to fast forward yourself into the future with all its implications I would try to stay in the present as much as possible, as you will read on this forum every blood cancer patient is totally unique and outcomes will reflect that reality. Stick to official information regarding your condition and stay away from dr google, listen to your doctors as impartially as you can, you will surprise yourself with your levels of resilience and what you can withstand. Remember treatments for many kinds of blood cancer are improving all the time and stem cell transplants in many cases are producing encouraging outcomes. I wish you all best with whatever decision you make and you will find a non judgmental listening ear here on the forum.
Hi Alfie and @Goody I really agree with everything you say in your reply to our friend, Goody, you talk so much sense, take lots of care of yourself.
Thanks Alfie! It is hard to stay positive whilst I’m going through treatment every time I get a small break from it and the brain fog lifts I feel myself become more possitive. Trying not to look too much into it but it’s such a big decision to make. Wish it was easier to decide …
The feelings you describe will be familiar to anyone who has been on the road towards a transplant, you mood will inevitably swing between optimism and pessimism, it’s partially the effects of the chemotherapy and yes brain fog is a real thing. If you feel things getting on top of you speak to your cancer nurse specialist and they will be able to direct you to services that can support you. This is not a journey you should make alone and talking to a well informed impartial voice can put you back on track whenever you have the “wobbles”.Family members though well meaning sometimes find it hard to separate out their wishes and desires from the person receiving the treatment. Remember this is a completely new experience you are going through and the answers you seek will most likely reveal themselves to you as part of your individual journey, when you get nearer to transplant be assured that all the pros and cons will be thoroughly discussed as informed consent is part of a very thorough process and you will be given time to go away and make up your mind with all the cards on the table. So just concentrate on this first stage, enjoy the good days and know that you are in the best of hands and the treatment you will be getting is the best it’s ever been, keep us updated on your progress when you feel you want to share any developments and don’t be afraid to let your emotions out it’s cathartic and natural to do so.
Thanks, realy appreciate all the help… It’s good to talk to people who just get it. I’m waiting to speak with a psychologist so hopefully won’t be long now. Will update once I know more. Wish you all the best x
Hey @Goody. Your diagnosis sounds identical to mine, which was in March 2007. I had similar thoughts, but ultimately wanted to be there to see my 6 year old daughter grow up if at all possible. I’m so glad I did as she is now doing her A levels and will be off to University in September.
The treatment both chemo and the conditioning for the transplant is tough, but it worked and I have been in remission since end of May 2007.
I had a fully matched Stem Cell Transplant from an unrelated donor as my 3 siblings weren’t a match.
I have had issues with Chronic GvHD.
The ongoing one of these is a redness of skin on my lower legs, which doesn’t really cause me any grief other than people occasionally asking if I’ve got sunburn.
The more severe GvHD is that I experience is pericarditis, which is the sack around the heart being slightly inflamed thereby reducing the heart function. This is controlled by low dose steroids, a small amount of immune suppression and some diuretics. This means I am able to maintain a pretty ‘normal’ life.
Anything that I am restricted by due to my new normal, I have found ways around and my quality of life is good.
I’ve changed job, moved house, made new friends and had many new experiences since my transplant almost 12 years ago, so would say go for it and live some more.
Hope that helps and best wishes.
Thanks Nick, yes that does help so good to hear how well it has worked for you! It’s good to know that regardless of the side effects it was still worth it. I know when I meet with transplant team next week it will be intense but hoping I will know more about a possible match and give me some hope. Wish you all the best x
Hi Goody, it helps me to write a list of questions, fears, what if’s, thoughts and feelings and if I can I have someone with me to ensure I ask the questions and to write the answers for me. Also I know I am no good making decisions on the spot and when I am nervous, stressed or fearful so a trick someone told me is to give myself time before I answer or even say I will think about it and get back to them. It really does relieve the pressure on me and give me time to really think. Please do let us know how you get on next week with the transplant team.
@Goody It may help to remember that some GvHD is is to be expected and is actually a good thing. It means you have a lower chance of relapse because your new immune system will attack the leukaemia cells.
Anthony Nolan worked hard to find me a match, he was a young guy from Germany.
Thanks Erica, yeh got a book full of questions so far…got more to add now I know my brother is not a match! Apt is Tuesday I’m so nervous, will update x