Stem Cell Transplant for TPLL

Hi again Molls58, I see you have been putting up a few posts and as you are seeing there has not been anyone with your partners type of TPLL come along but we have many who have walked the Stem Cell Transplant (SCT) journey.

Regardless the ‘type’ of blood cancer the SCT journey is basically the same for everyone with the main being the type of SCT.

As I could not be put into remission I had to have 2 Allo (donor) SCTs. If I had been put into remission I may have been able to have an Auto SCT using my own clean harvested Stem Cells….. you can hit my community name and see my full story.

You will see for my story that I have an incurable type of Lymphoma so for me achieving long term remission would be a win as until I reached remission back in Sep 2016 the longest remission I had been in was 6-8 months over the first 17 years of my journey.

The main question that needs to be explored is your partners age and fitness to go through SCT.

I have talked with a few folks who have successfully went through SCT who were in their early 70 but the most important thing was they were in perfect health apart from their blood cancer so it sounds like your partner in in a good position.

It is very important to realise that SCT consultants would not put someone forward for S T if they thought that they were not fit enough to do the process. I have Asbestosis so this was seen as an acceptable risk for going forward but as was ‘on the clock’ and 0% chance of getting g past a few years SCT was my last hope…… I am 6 years out and doing great with no regrets.

Wow, Mike!  many thanks for your post. Very encouraging that healthy 70s have undergone successful SCT. Your cancer journey is both miraculous and inspirational. We are going to maintain his health and fitness levels to ensure we have a positive outcome. Keep well. 

Hi moll, I’ve been fighting Hodgkin lymphoma for the last 2 years I’m 35 now with 2 children and it’s destroyed me, I’ve come out of my stem cell transplant in October and hopefully that’s the end of it, I’m finding it really hard to get bk to the person I was mentally and fiscally, I just f

Hi Craig86 and I see it’s your first post so welcome to our little corner of the Community. Sorry to hear that you have had such a difficult time over the past two years. The blood cancer journey indeed can be challenging in so many ways.

The physical battle during and post treatment can be significant but more so going through Stem Cell Transplant (SCT)…… I know this well as I have had two Allo (donor) SCTs.

The mental battle is also a challenge as the SCT process can be scary as you are basically taken to a point where the smallest infection could be fatal.

You use the words “destroyed me” and I can understand this…….. but when it comes to a journey that includes SCT it is designed to literally take your immune system apart and rebuild it….. but this process does at times come with post treatment ‘left overs’ but these are not insurmountable and looking at the bottom line better then the other options without going through SCT.

My story is long, 22 years long in fact and you can hit my community name to see it but for me SCT saved my life.

When my condition became aggressive back in late 2013 - chemo, radiotherapy and 2 SCTs were proposed as my plan and if it worked great, if it didn’t I would go onto palliative care for a few years.

You are 35 so your body is going to recover much quicker than my 60 year old body at the point of my second SCT….. but I am over 6 years out, been in remission for over 5 years and living as normal a life that any 66 year old can live.

The fact I have been in remission for 5 years is amazing as until then I had only ever been in remission for 6-9 months over my first 17 years. My type of Lymphoma is incurable but our hope is that we have put it to sleep for a long time.

You may find this ongoing thread below helpful as it’s where we have collected our post SCT survival stories, it does go down rabbit trails but it is all about life and living.

Life after a SCT - A Survivor's Guide

Happy to chat at any time.

Hi Craig, am so sorry to hear you have been fighting lymphoma. Like you said- you are hopefully over the worst. I can only tell you about my own experience (non cancer) which may help you mentally. After years of suffering from a debilitating illness, I had no option but to undergo major surgery. The operation lasted 8 hours, resulting in a temporary stoma. Mentally and physically I was a wreck. I gave my stoma a name, as it was the only way I could cope. I had a reversal 10 months later. My road to recovery was long. As well as coping with the mental strain of seeing (in my mind) my mutilated body, I also had to begin the journey to regain my physical fitness. I took baby steps, one day, one task  at a time. Small walk, some light cooking, I showered every day, read a couple of pages of a book, slept when my body told me to. It took me a full 3 years to get back to the person I used to be. 10 years later, I have never looked back, or been better. I intend to utilise what I learned on my journey to help my soulmate through his battle with cancer. I truly hope Craig, you find a way forward. Sounds like you have a loving wife, and wonderful children to help. Take care. 

Hi Molls58

Hope all goes well for your partner. I had my transplant for relapsed aml in May 2019 aged 61 and  so far am doing really well,life is almost normal again. Earlier today I spoke to one of my ex neighbours who had her transplant over 2 years ago aged 72 she too is doing great. Hopefully this can give you hope of a successful transplant journey xx

Hi Mark, thank you, your post is very reassuring. So pleased you are getting back to health. Fantastic news re the 72 year old. You have most certainly given us hope. It is not often you hear the success stories in relation to cancer.

Molls58 you may want to have a look at this thread SCT Success Stories 

I have TPLL and am having an allo sct next week. I had 3 months of Campath. Happy to answer any questions

Hi Sarah, so sorry to hear you have TPLL. I would love to hear about your experience with campath, and the process you have undergone in relation to SCT. What symptoms did your TPLL present before you started chemo?  My partner has been told, his TPLL is currently dormant, but the team would like to start chemo in about a months time, before the infinate time bomb goes off. At age 72 his chances of success are limited. Thank you Sarah.