You want to what...?der

Hi and welcome to our little corner of the Community and sorry that you are just getting a reply - it's been rather hectic the past few days but no excuse.

You can look at my profile at your leisure but long story short - an Allo SCT with Stem Cells from my big brother was the only tool left in the tool box left to save my life. My first Allo SCT was in June 2014 - it had failed by Christmas then I went back for the final SCT role of the dice in October 2015 and so far so good.

"........So my question is can someone explain, or point me to where I can learn, exactly what's going to potentially happen, odds of success, odds of survival without procedure, etc...?....."

To give you a better answer, what type of SCT are you going to have? Using your own Stem Cells or using matched donor cells?

You may want to have a look through this thread SCT Success Stories as it gives some stories from some members journey.

Looking forward to walk this journey with you.

Hi , and know you’re not alone!

and yes, a musicians life isn’t an easy one (both my kids are!) and daughter who is a freelancer went through hell and back but is still out there fighting to stay financed through this virus storm too. 

Sending you virus free hugs, stick around and ask all you wish to know! As Mike says, our stories are on our profiles.

xxx

From a donor. My Sister didn't make the cut which is shocking, she's always been the overachiever of the group. I'm kinda glad she didn't so I can give her shit about it ;) Does my "impressive" reaction and recovery from chemo and hidec chemo say anything about the future condition? I'm swaying towards no stem cells and instead exercise, diet, herbs and the grace of God and let the card's fall where they may.

Thanks for replying! 

Hope all is well!

Thanks for the hugs Moomy! That was the most affection I had in a while! LOL! 

Wish your kids luck. It's a slippy slope being a musician and by slippy I mean people suck.

My only choice back in late 2013 was 2 donor (Allo) SCTs with cells from my brother or 2 1/2 years on the clock then a wooden suit.

Yes it was all hard work, but I am fast coming up to 4 years post the final alarm bell, doing well and not complaining...... just doing my best to keep away from COVID.

Rather than clog this post with my story hit Thehighlander and see my story but a good Single Malt will make even more impressive.

Hi, Don't dismiss it out of hand, not easy but it IS do-able and teams are getting more experienced all the time.....

daughter was actually pleased that her brother (our son) wasn't a close enough match, knowing she might have failed, she didn't want him to for ever blame himself. She had a possible 3 donors, one they couldn't trace, one was pregnant but the third was ok with it, and helped save her life, bless him, several years later we actually met, he's called Thomas, born in Hamburg but lives and works in Berlin. It was a really emotional weekend, daughter insisted I was the one accompanying her, we flew out (she had found a cute AirBnB) and found our way into what used to be East Berlin (just) and met him that evening. It's a wee bit of a blur now, think because of the emotions! 

Hugs xxx

That's a beautiful story and thanks for sharing! Your Daughters' reasoning for Brother not being compatible is a real eye-opener!  My Sister felt terrible that she didn't match like she had let me down. I told her nonsense and besides, she always did tell me I was adopted! :) 

Have you ever had something given to you by someone and whenever they see you wearing or using it they say "Hey! Nice _____! Where'd you get it?!".? Just to let people know they got it for you or so you don't forget. I hate that! I could see that happening if I ever met a donor. lol! Does your Daughter keep in touch with "Thomas"? You mentioned he "saved her life". What was her prognosis without a stem cell transplant? Why death? If I may ask.

Hi, 

yes, they do keep in touch, mostly birthdays and Christmas.

and yes, she had such a long illness with failures from treatments, it was only a medication which was waiting for FDA registration so still known by its trial name, SGN-35, now known as Brentuximab Vedotin, which got her into remission after 7 years of trying. So as her lymphoma had been so very resistant to treatment, her Consultant strongly advised the allo to hold the remission. She had spent several years being told to get her affairs in order, and I well remember one clinic when she was told ‘yes it may only be 4cm (one of her chest nodes) but it’s 4cm that is determined to kill you’ 
There’s a photo of her PET scan pre-Brentuximab and the infected nodes all over, if it had been staged then it would be 4b. And a photo of the one after 4 treatments is completely clear! Miraculous! 

Hugs xxx

"Wooden Suit". That one took me a minute! Good stuff! 

My current status: The doctor "Team" I'm dealing with has currently (yesterday) deemed me "NOT a good candidate for transplant due to Psychosocial/Mental capacity". NOT health/medical reasons. I'm actually perfectly able according to my body's extremely fast recovery. As well as excellent handling of chemo and such. 

This is a rather heated debate we have been having since the beginning. I have done everything they asked without question medically. But had/have an issue with the psychological and psychiatric evals. But I did them anyway. Even got roped into a bullshit 4 month class on drug and alcohol use as coping mechanisms. I haven't drunk or did drugs in 10 years. Apparently, those who get compensated highly for their time, believe us that don't, got time to kill. On top of the fact that its an hour plus away from me, I can't drive and have no money because I haven't worked for 3 years. (They misdiagnosed me for one and a half and just plain couldn't figure it out for the first year). I'm not sure if my disdain for the Healthcare System is coming through or not, but if not, it's there alright. 

So after bending over backward, jumping through hoops and going along with their bullshit game of "I'm god and you're shit" by dangling my life in front of me like a carrot. I told them to kindly go f themselves and walked out. 

DISCLAIMER- I am not nuts in the traditional sense of the word. I just don't fit in that little box on the paper. You see, I'm an untrusting soul that has trouble mindlessly obeying commands that seem completely futile in my recovery. So instead of "Sure! I'll waste more time doing bullshit so your buddy can bilk money from my insurance company too", I'm asking "WTF does my ability to draw a TUBE have to do with jack shit!?!"

Is it me?

I am sorry to hear your news and what can I say? I am making an assumption that you are not in the UK - correct me if I am wrong.

SCT is one of the many very expensive treatments that are made available through our National Health Service in the UK. You have to fit the criteria both physically and mentally to be approved for the process.

Stem Cell Transplant is a rather unique rollercoaster that is equally demanding on both physical and mental capacity.

I am a very level headed person with no history of any mental or substance issues. But way at the beginning of my SCT journey part of the deal was spending time with the SCT team Psychologist to ensure both my wife and I fully understood the mental challenges that we would face over my two SCTs.

Never thought much about this apart from it just being part of the process. But very quickly we found the benefits kicking in.

We had regular visits from the Psychologist during our 4+ weeks in my little room. We obviously did this two times in the space of 16 months with the second SCT being a final roll of the dice and we were advised to actively get our affairs in place including the ‘wooden suit’ but decided on a big fire-pit ;)

But I must admit that her support was an essential part of getting through the process and more so during the 7 weeks fir SCT umber 2 including a few visits to ICU..... but also for the following year post SCT number 2 as I was very ill.

Our SCT unit is a 8-9 hr round trip drive away from home so we were both taken out of our ‘safety bubble’ and isolated in a city that we did not know much about.

I think what I am saying is I can understand in part why your team may be holding back on you jumping on the SCT Rollercoaster.

We came through it ok but we do know a number of folks who have been left with long term debilitating physical and mental challenges.

Always around to chat or for you to vent off.

I wish you all the best in what ever direction this takes you.