Newbie to SCT

Hi again Mike Whatcanyoudo and welcome on the Stem Cell Transplant rollercoaster but sorry to see you join the ride.

This is a LINK to our initial discussion in the DLBCL group so folks can see what has been said already.

I will let the other group members who still post in the Community come back to you..... we do have lots of folks come through the group over the years but after a while they just move on with life and this is great but some of us stick around just for people like you.

You may want to make a cup and have a look through this thread Success Stories from Stem Cell Transplant

..... and this one Checklist for SCT Unit

You can also go to the group 'Discussions' tab and have a look at all the thread headings and dip in and have a look.

You can also put GDP +R or R+GDP or even just GDP into the search tool and have a look at the threads.

Always around to help out Mike.

Hi Mike,

Welcome to the forum although I am really sorry to read about the reasons for you joining. 

I think the emotional aspects of this can often be harder than the physical aspects. Your analogy of the cancer constantly chasing you struck a chord with me. My imagery was slightly different in that I imagined I was walking into a dark abyss and each step was a step further down. It can take a while to work through those emotions but you can definitely work through them and get back to feeling how you want to feel. I’ve been through an auto and an allo and yes they were tough (the allo was worse than the auto for me but neither were fun), but I recovered and am pretty much leading a normal life now.  I found it really hard to see the treatment making my health progressively worse and that might happen for you for a period of time, but I just tried to get my head down and keep in mind the overall goal and to see these procedures are hurdles to get over rather than steps leading down into an abyss.

If you imagine the cancer chasing you, maybe one way to think of the auto is like it is pressing a massive rewind button and it’s going to push the lymphoma so far back into the distance so that it can no longer see you? It may catch up with you again at some point but hopefully this will put it so far back in the distance that you can get on with your life and not worry about it?

Wishing you all the best,

Greg

Greg, thank you for taking the time to reply it is very much appreciated and helpful. I will work with what is going on in the head and hopefully get through all of this. Mike 

Hey Mike,

I know how hard this must be and agree with what the guys have already said. Just because a treatment doesn’t work doesn’t mean the next one won’t. I like Greg have had both an Auto and Allo and at times thought there was no end in sight. 
I was originally diagnosed with HL nearly three years ago and my first two lines of chemo failed to work. I finally gained remission through Brentuximab and went onto have an Auto but relapsed only a few weeks later. I was then put onto the immunotherapy Nivolumab, but this too didn’t work. It was at this point I honestly thought I might be one of the unlucky ones and was wondering where we would go next. My consultant who has been fantastic through out suggested we try ESHAP which thankfully got me into remission to enable my Allo last June from a 9/10 donor. 
For me the Auto was extremely straight forward with no issues at all but I found the Allo a lot harder. I am now nearly 9 months post Allo, (touch wood) still cancer free and back leading a full and normal work and social life so things can and often do turn around. 
The thing that has warmed my heart the most has been the care and support of the hospital staff who have been absolutely amazing. Both my consultants are extremely friendly, approachable and willing to listen to new ideas which has helped me along immensely and they both constantly pushed to get things done for me. Hopefully your team will be the same and coming up with a plan that they think will work best for you individually. 
Anyway I just wanted to say that although it’s disappointing, lots of people relapse and still go onto cure so keep believing. 
Good luck

Mark

Hi Mark, thanks for your reply and you have certainly been through the 'mill' like so many on here....and come out the other side. That does help to push the back my dark thoughts that nothing will work. I agree entirely about the hospital staff and all have been great, especially the clinical nurse specialists who do seem to really care and push open doors to get things done.

All the best to you.

Mike

Hi Mike Whatcanyoudo,

And another welcome, though sad to see you needed to join here....I lurk around the SCT group (I was the person who asked for it to be set up as it’s a very different treatment) as our lass went through both types again like Mark, for Hodgkins, as nothing in 7 1/2 years worked for her, her third trial in late 2010 was what we now know as Brentuximab, and it worked and fully! Her consultant phoned her in amazement to tell her (she was in a taxi in Paris getting back to her tour) and then he persuaded her strongly to go through an allo, which she did in September 2011. She’s been in remission ever since but has a clinically very low immune system. Doesn’t stop her much though!

hope things go well for you, keep posting, no question too daft!

Hugs xxx

Well. I knew the SCT would be a challenge but that was without Convid19. No idea how they will wipe out the immune system and keep those of us about to have this clear. A question for anither time.

Started GDP-R last friday and came into Guys for last bit of cycle. Nearly didnt do it as kidney function not good...borderline. Went agread but only if i spend night in hospital to put on fluids and monitor.

Guess the Cisplatin is culprit. I felt rough last day and weeing lots and not maybe drinking enough. Feel a bit of a fraud taking a bed up.

Just wondering if kidney issues common. Worried permanent problem just from 2 days ago of drug.

The IV fluid seems to be reviving me so fingers crossed.

Best to everyone.

Mike

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Hi Mike Whatcanyoudo,

One thing time remember, once the ‘take down’ of your immune system starts you should be in a SCT unit that is specifically designed for keeping you safe from all and any bugs.

In reality, a simple cold taken into the unit by a well meaning friend can be just as dangerous as this new virus.

During my total of 59 days (over 2 SCTs) in my unit I only ever had 5 or 6 visits from family and friends apart from my wife staying in a room next to the unit.

Every visitor was temperature checked at the unit Airlock corridor and yes, some were turned away as their temperature was borderline.  

Kidney problems are indeed an ongoing issue and will require regular monitoring. Drinking enough is very difficult. We did not have water jugs in our rooms so my team made me set my phone for every 30 mins to remind me to drink one glass of water then I had to buzz them and a new clean glass with ice was taken through and my chart was marked so could not get off with not doing it.

Then on the opposite hand at times I was retaining water so was put onto the ‘pee’ IV and this was always just before lights out...... I was required to ‘collect’ EVERYTHING that came out of my body so on a ‘pee’ IV night I could 15 cardboard chamber pots used by morning....... and that did not include the ‘other’ cardboard catchers.

It’s all fuzzy memories now and I have to say some funny memories as to some of the things that went on.

The important thing is to keep your eye on the greater good in all this.