SCT - BPDCN - what does post transplant look like?

A lot depends on your health, the conditioning treatment and pot luck. 

No i life will ever be the same. Cancer and sct changes you. Its a massive trauma on the body and mind. Forget life pre cancer and focus on being the best you can post cancer because you aren't the same, you're literally changing your DNA. I'm 36 now and definitely struggle compared to others my age but the other option was death so despite the side effects I'll be forever grateful for having had the transplant. I'm here to see my kids grow up. 

A little gvhd is a good thing. Shows the donor cells are working. I had mild skin gvhd. Docs are used to dealing with it. The most important thing is that you're vigilant and report any changes. 

I can't remember from our other feed how old you are. But sct is designed to be a cure. Some are doing maintenance chemo afterwards so might be worth asking them about that.  However the stats are not worth paying attention to because the cancer and so few go to sct that they really only have a tiny cohort to look at. I know a guy who's gone 9 years and another who's almost 5. 

It's hard and the first couple of weeks as counts tank are awful but it's quickly forgotten as counts come up. If you have total body irradiation before that then wipes you about 6 weeks afterwards. I was sleeping for 18hrs a day. Although SCT is quick, recovery is a long journey. And the 100 days isn't then you'll suddenly feel back to yourself it's that you're simply less risk of infections. 

I don't think anyone can prepare you for it as everyone is so unique. Different health, conditioning treatment, reaction to donor, side effects. It's a roulette but i think most people would say its worth it. 

Hi Coolie and welcome to our little corner of the Community and sorry to hear about your journey I far.

Coolie said:

I would like people’s honest thoughts and opinions on their stemcell journeys and how long it took them to get back to the life they had pre cancer

……. this is the big money question that would gather significantly different answers.

My journey is 25 years long but safe to say that back in late 2013 Allo (donor) Stem Cell Transplant was my final role of the dice……

My story is rather complicated (See my story) as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013.

You will see from my story that I actually had 2 Allo SCTs…… (June 2014 then Oct 2015)…… but in these past 9 years post SCT a few new treatment have been developed so I now have a fallback should things kick off again…… but I turned 69 a few weeks ago and as a family we celebrated 9th re-birthday and I am living a great life and we continue to look forward to what else life has in store first us to enjoy.

You may find this long running thread helpful… Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

Once you have had a look through my story and the other link do come back with any specific questions you have.

Hi Coolie.

I agree with everything Beckilu22 is saying, ive had 2 bone marrow transplants, you can read my profile, the first was a disaster, the 2nd one done on the 4th August, was the complete opposite, the drs are amazed at my recovery now, if I didnt do the 2nd transplant , I woudnt have saw my 2nd grandaughter being born, I intend to walk my daughter down the isle in June 2026,you have to keep positive, hard as it can be days, it is a hard journey, and a lonely one, I have a motto, thyre's one loser in this battle and its not me, no 2 transplants are the same, mine proves that, things that we took for granted before, are privilege's now, we just have to adjust to our situation, the fatigue and brain fog are my biggest problems at the minute, but ime only 118 days post transplant, I go to clinic once a week, my next goal is getting down to once a fortnight, that will be like a fortnights holidays  its small goals now, so keep positive, ime sure thyre will still be bumps along the way, but worry about them if they happen.