Petrified!

Dear Naiad, I had AML in 2014 and given two weeks to live without treatment. I had 3 sessions of chemo lasting 4 months and then a BMT. Only this combination allowed me to live my life. It does depend on what cancer you have and your prognosis. 

It is difficult but depends on a lot of things as to how you and the cancer you have react to the SCT.

Good luck

I will jump back in Naiad as you are asking a specific question.

Naiad said:

I need to hear the truth but is anyone living a life they consider normal?

I most certainly am living a normal life that any 66 year old would be pleased to be living. I can’t see how old you are but I was 58 then then turning 60 when I had my two Allo SCT.

By then I had a poor quality of life, a very poor prognosis and had been suffering with my rare skin NHL for over 14 years.

I now don’t have to think about the cloths I ware as some cloths effected my skin.

Per-Covid we had some great holidays abroad and felt intend to do the same in the future.

I am retired but do help out my daughter in her haberdashery online business every week and live it.

We walk a good 3-4 miles every day.

Look after our 4 under 9 year old granddaughters for sleepovers and most certainly are tired by the time they go home - but who wouldn’t.

A few month ago we drove 10 hours (in one day) from Inverness to Surrey to see family and back the following week.

Go out for meals, went to see James Bond in the cinema at the start of the week.

Yes, there are bumps in any treatment journey, not just SCT but the main thing to be looking at is it’s all about the greater good on the other side, don’t get suck on the information about side effects, if these come along they are only for a short period of time and as my amazing Specialist Cancer Nurse kept reminding me “No pain no gain”  ((hugs))

Thank you!

Thank you. Its so hard to decide as it may or may not come cack with chemo alone. I am glad you are doing well.

Hi Naiad,

I am definitely living a normal life. It was very difficult for about 9 months post SCT and then I recovered, and now I’m nearly 6 years on and my life is very normal. Every story is different and there are unfortunately no guarantees but there are loads of people out there for whom SCTs have been very successful.

I have a different blood cancer but I was given the choice about whether to do a donor SCT or not, there was no guarantee it would give me any benefit and there were grave downside risks. But I was relatively young and fit and I wanted to give myself the best chance of the longest possible life. My psychology at the time was that I would rather fail whilst doing something rather than fail whilst not doing something, but everyone is different and I massively regretted my choice for about a year after the SCT because I went from feeling pretty well before the SCT to being very poorly, but I did get quite severe acute GvHD and not everyone will get that. There are certainly no rights or wrongs in this and I definitely feel for you as I remember how incredibly stressful and uncertain that whole period was. Like others have already said, the best advice I can give you is to listen to your own medical team, get them to explain all the details specific to you, and then take as long as you need to make the decision that is right for you. And try your best to then go forward with the confidence that you are doing the right thing for you. I agree with you that I wished it was a no brainer, I think it would have been easier to make the decision that way.

Wishing you all the very best with this

Greg

Thank you Greg for your understanding. Is is very hard to decide to do a risky procedure with such a long recovery time when you may or may not relapse.  Do you mind me asking how d you were. I am 53.

Hi Naiad.

I was diagnosed with Aml aged 61. I had my chemo over the long hot summer of 2018 and was discharged in the October. A transplant was mentioned but they decided to watch and wait as some people don’t relapse, unfortunately I did after only 5 months. I was dreading a transplant as I had read so many bad stories. I had my transplant in May 2019 and did have a difficult time in hospital but emerged after 6 weeks. The first nine months were hard, but not all bad , I had gut gvhd and some skin gvhd . Now I am feeling virtually normal, I get tired some days on other days I can run 5k. Life is good again. Hope all goes well for you x

Hi Naiad,

I was 36 when I did the transplant (I am 43 now). Age is definitely just a number but I do think fitness and other health concerns are relevant when doing an SCT. However, GvHD can crop up for anyone, I don’t think it is fully understood why some people get it and others don’t. I had no other medical problems and was relatively fit when I did the transplant yet I still had a very tough first 100 days spending most of it in hospital, and yet there are people a lot older than I was who sail through and are back home within a couple of weeks. I know this makes it harder to predict and I think that is the thing I learned the most which is to try not to predict what might happen in the future (much easier said than done I very much appreciate!!). Doing research and asking others for support and guidance is fantastic and I would definitely encourage it but ultimately you are a statistic of one and have your own path to follow. Those who have walked a similar path are here for you and will have some understanding of just how awful it all is to try and help along the way, but you will have your own path to follow and so I think being clear in your own mind about the direction you want to go in is important. You won’t be able to control where the path goes and there will be lots of unexpected twists and turns along the way, but it is your path to own if that makes any sense?

I am really feeling for you because I remember just how uncertain this whole period was. I hope you manage to get some good information and some good advice to help you through this time.

Greg

Thank you. Why this is so hard for me right now is that I am being offered it before I relapse. I guess that's a question for Monday. I am glad you are on the whole feeling good.

Thank you Greg. A big part of me is saying wait and see if you relapse. But they say oh we may not be able to do it then so better now.