SCT Success Stories

ssd, I was clearly told if the the plan (loads of chemo and radiotherapy and the possibility of two Allo SCTs) did not work then the was it, game over :(

So when my first Allo did not work it was a challenging time. It was so frustrating that Allo one did not work as it had been a breeze to do and had it worked I would not have had the long recovery that I knew was facing me following Allo number two........ but this is now 34 months past and the view in the rear view mirror is getting rather fuzzy  

Hello SSD, 

I wanted to reply to your post. As a long term observer on this forum, I know how helpful and comforting it can be when you hear the stories of someone else who is your position, or has already been through what you're facing - you're not alone.

By way of my background, I was diagnosed with stage 2B Classical Hodgkin's lymphoma back in September 2017, aged 23. After being told HL is the 'best' cancer to have and the treatment is very much A to B, I've not had the most straightforward case.

In summary:

- 2 rounds of ABVD (reduced 2nd dosage due to elevated ALT Liver function)

- PET Positive after 2 cycles, although there was a reduction in the 'active disease'.  My consultant wanted me to have another cycle of ABVD as the 2nd cycle had been heavily reduced due to my elevated ALT function.

- 3rd cycle of ABVD and then another PET.  Unfortunately, although the areas in my neck and armpit had decreased, there was increased activity in my chest and jaw.  There was also a tiny spot showing on my lungs, but the Doctor thought this was likely to be due to infection.

- Due to the increased activity, my treatment was escalated to BEACOPP-14.  I was PET negative after two cycles, but continued to have 6 cycles in total. 

- Unfortunately, my post-treatment PET showed a small amount of activity again in my chest.

- I underwent various biopsy's, including an EBUS procedure which came back negative, a second PET showing increased activity in my neck and chest and then finally I had a lymph node removed from my neck, which confirmed Hodgkin's lymphoma.

- I've since had two cycles of GDP, and I have just this week, had a negative PET scan.  I am now to undergo another cycle of GDP and then into an Autologous SCT in a few weeks time, to finally put this disease to bed!

Regarding the GDP, the first cycle was ok - I felt very fatigued for a few days after day 1, but by day 8 I was feeling good and ready for more treatment.  Day 8 is only a 30 minute infusion and each time hasn't really made me feel poorly at all.

For my second cycle of GDP, day 1 did knock me for 6 in terms of fatigue and my general energy levels - I spent the majority of a week in bed/on the sofa sleeping constantly.  It is definitely one of the tougher treatments I've had, but it is very manageable and it's relatively quick.  You can get through it!

I've just started my third cycle of GDP today (Friday, 24 September) and am feeling a little nauseous after vomiting just as my infusion was finishing. But a quick anti-sickness through my PICC and I was feeling much better.  As with all of the other treatments I've had, the doctors have managed my nausea very well and I've only vomitted 2/3 times throughout the whole process.

If you have any specific questions about GDP, please feel free to ask me as I would be more than happy to help.

Best of luck with your treatment, it'll be worth it :) 

Two years ago my husband was diagnosed with MDS and PNH. He was so ill and the only treatment available was to go straight into an allo SCT which he had 6 months later. We were told it had a 50% chance of success (so just like tossing a con).

Now, 18 months post transplant, things are different  but still a struggle in many ways. He still has mixed chimerism which is nowhere near acceptable levels, despite four DLIs. There's one left...they are saving it as a last ditch attempt.

He still has to visit the haem team (a long drive away) every four weeks. They have no further ideas to prompt a better response from his donor cells.

He has "picked up" two further specialists to deal with the fallout from SCT, not GvHD, but metabolic and possible secondary cancers. So further rounds of scans and tests and pills and hospital visits. None of which they seem able to co-ordinate so triple the travelling.

On the good side, he currently has no need for any transfusions (which were at least weekly, pre transplant)

But one of the worst things is that everyone now assumes he is better. So the emotional and practical support has totally run out for both of us.

Is it a success? Who know. It depends entirely on the criteria by which you measure it.

Hi and an official welcome to our corner of the Online Community.

I see you have been on the site for a good few months so I do hope that you have been able to find information that has been helpful and positive for going forward with your SCT journey.

You know how this all works and all we do is use our personal SCT experiences to help others through theres.

If we can help at any time just give us a shout and we will be along and do our best.

Hi all thought I'd just share my first anniversary of my Auto SCT, I was diagnosed in 2016 with Follicular Lymphoma stage 3, had 6 cycles of RCHOP, 28 sessions IMRT Radiotherapy, 3 cycles of Rice, BEAM followed by Auto SCT, .

I saw the consultant on 20th Aug this week after my blood test, there is no sign of anything going on. I feel amazing and so happy to have my normal life back without any further medication. I'm back attending the gym classes , golfing , holidays and playing with my grandchildren. It's took me 12 months to put 2 kilos on.

May it stay in remission Sue 

Love this Sue xx

No responses to my post? Am I invisible...or is a "not quite successful SCT" too hard to hear about?

(Thank you to the person who contacted me off-board)

 I thought this was a safe place to share the entirety of our experiences.

Disappointed Custard.

Hi Custard, I have to say I have missed a few posts over the past weeks mainly due to not getting email reminders, no excuse, but sorry for that.

As you say success does depend on how it is viewed. The fact that I am still around, for us is a great success but when the quality of life is greatly effected then where does the line get drawn :( 

I do remember getting to that 'last ditch DLI attempt' a very scary time but now being 30 months on it is all getting rather fuzzy at the edges.

I do understand the repeated long journeys, very tiring and just an added stress. But getting away from regular transfusions and getting more opinions is good and let's all look for progress to be made.

And yes this is a safe place to share our journeys, good or challenging, this is what the forum is for.

Again sorry for missing your post and warm Highlander ((hugs))

Thanks Mike.

The consultant says my husband's SCT is a success because he is still alive. (I need a weird face emoticon here)

There seems to be little or no acknowledgement of the emotional enormity of the event and the continuing worry. And of course, with the high chance of relapse, every visit we make to the hospital has that feeling of "will this be the time they tell us it's back?" If I have one complaint about the treatment of both him and me, it is that, although they may be fine at the clinical stuff, what goes on in your head is ignored.

The most memorable comment we had was from a Macmillan nurse. She said "Blood cancer is just not like breast cancer. With that - Dx, surgery, chemo and radio - it's usually over well within a year. This one is for ever". She was right...and there is so little understanding of this.

Wishing it could be fixed Custard

You know that this is a common thread that comes up on a lot of post treatment conversations.

The Beatson in Glasgow were great and did arrange for us both to see a Psychologist before each SCT and on the days before being discharged from the unit. We also had a couple of follow ups for the first year with our local hospital Psychologist up here in Inverness, and my Macmillan Specialist Nurse has been excellent.

Even coming up to three years post Allo number two I meet up with one of the team in our local Maggie's Centre just to make sure I am doing OK, and I have to say my amazing GP had me come see him every four weeks just to keep an eye on me as he totally 'got' the journey. He retired at Christmas but took the time to do a 'hand over' to my new GP and she is insisting I come every 6-8 weeks.

My wife Fiina and myself do understand where you are at and what you are having to go through and I wish I could make these appointments more bearable and just change what is happening but in it what it is :( 

I am working with my Macmillan Specialist Nurse on a two year project with some of the main players in Cancer support in the Highlands looking at how improvements can be made to the patients whole cancer journey and more importantly at post treatment support.

A warm ((hug)) from my wife and I xx