BEAM then auto SCT (Mantle Cell Lymphoma)

Hi Mark, good to see you have found our little cornet of the Mac site. You will have seen this thread about the M in BEAM but I will put it in again to keep everything together. Along with the 'What to take Checklist'

I never had an issue with the M and did the ice thing for a good 30 mins before, all the way through the M and for 30 mins after.

Was also given a two pack oral rinse called Caphosol. So from day one I set my phone for every 3-4 hours to ensure i was using the stuff and even set a timer to ensure i had it in my mouth for the correct time.

Once mucositis gets past a certain point the Caphosol was not so effective and more specific anti-fungal/painkiller treatments need to be used to get the condition under control...... my team said that the Caphosol was very expensive so it should do its job.

We are around to help you through this.

Hi Mark,

Just wanted to extend another welcome. Hopefully you will find some good support here, and you might even connect with someone going through the process the exact same time as you.

It is over 3 years now since I had the auto and to be honest the memories are fading quite a bit. I still remember it being a rough few weeks, and certainly not something I would ever choose to do again, but it is all temporary, a necessary evil to get you where you want to be.

Please keep posting as and when you can, and I wish you all the very best

Greg

Hi all, 

I've been out of hospital for about 2 months now, and more of a mind now to record the event, now that I am feeling a bit better, which hopefully others who follow might find useful.

So I went into Queen Elizabeth in Glasgow in mid January 2019 for what I called my "big chemo". And so it turned out to be. Others have said it's hard but manageable. That's definitely a nice way to put it. For my experience I would call it very hard maybe even kind of brutal. But I guess everyone has a different reaction and experience.

Having completed my 6 rounds of Rituximab / Cytarabine over a 4 month period I walked into QE for my BEAM and auto SCT, and 37 days later I was pushed out in a wheelchair having lost about 10kg and my hair and lots of strength and muscle mass. I was definitely what you would call poorly and fragile after the treatment.

So what was it like for me. The first 6 days I got the 4 chemos of BEAM, and on day 7 I got my auto SCT (SCT day actually gets called day 0). That went reasonably ok. As others have said I got mouth ulcers etc which was quite hard.

A bit of a waiting game then as your counts go down and everyone waits to see if you get an infection. Of course I got an infection maybe 6 days after SCT. Turned out to be a pretty tricky infection which also caused reduced blood pressures so I had to be moved to HDU (High Dependency Unit) and I spent 5 days in there, getting pumped with antibiotics and fluids. That's probably the worst period of my whole stay in terms of how ill I was. I basically struggled to drink, was sick a lot, and stopped eating (actually didn't eat any food for 10 days - didn't think that was really possible) but was generally a bit ill and really rough.

Having got all the fluids in HDU, I was then overloaded, and it took quite a few days to get rid of the fluids using diuretics.

Over the stay I had 3 different lines, because the doctors kept getting concerned that I was getting infection through the lines. The first the Hickman Line definitely got infected. The 2nd the PICC was removed after 7? days. And the 3rd in the groin was removed towards the end of the stay as I was moved to fully oral medicines.

I got very dry skin and lots pealed off from my arms and legs and feet in particular.

I was still struggling badly to drink and eat, which meant lots of my medication was changed to liquid from tablets, on top of the IV meds I was still getting. 

I eventually had a nasal gastric tube inserted to improve my calorie intake and nutrients. The tube stayed in for about 4 weeks after I left hospital, by which time I was eating fairly normal amounts, although my taste buds are still not normal.

When I got home I was very weak, and could only walk with assistance of a Zimmer or sticks. But over a 3 to 6 week period I got back on my feet, and I'm managing to walk for about 20 mins each day.

So why did I write this? Partly to help others who may still have to go through treatment, but also for myself, to prove that I was able to get through all the treatment. To show to myself that I could be really unwell during treatment but the treatment is there to help, and you can do a recovery and get into remission.

I reach day 100 next week and I can stop taking 2 of my medicines, and I think the infection risk is reduced.

I start Rituximab maintenance soon, and nebulizer to protect against pneumonia.

So overall it was pretty hard physically, and it's a long process; 37 days for me. But it's something you have to do to get into remission. Of course no one can say how long remission will last, but hopefully as long as possible, fingers crossed.

PS, I've posted this on the Stem Cell Transplant group and the Mantle Cell Lymphoma group.

Cheers Mark 

Hi Mark replied on your MCL post

John 

Hi Mark,

glad you got through and are gradually improving; it can be a rough ride, but it sounds as if the hospital did a cracking good job in taking care of you!

go steady, you’ve been through a lot, but gradually build up of course.

hugs xxx

Hi Mark, thanks for the update.

Your words brings back strong memories of my second Allo SCT across the Clyde at The Beatson. It’s hard work but it has to be done. 

Day 100 is one of many milestones in the post treatment journey. Dr Ps final words to me when I was let out of the unit were “...going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training........ give your body time to reciprocate”

Well done.

Thanks for posting this. It reminds me very much of my husbands treatment. He has had sct (our daughter was the doner) for luekimia.. I’ve been on here before in the lead up.... but not much lately as he really was so poorly, I couldn’t think straight. Today (day 40) he’s actually starting to walk the dogs on a gentle walk locally, it absolutely exhausting him but he’s trying and eating better, a small amount of porridge and v small dinner (mash and veg!) with 3 enshakes. Can’t say I’m still not worried as it’s up and down rd, the tears come so easily and words like ‘will I ever be myself again’ all I can do is keep supporting him and hope that one day he will get there.... your post has made me feel hopeful and I’m very appreciate you took the time to write. Thanks again 

Good to get an update Leedee, you are both doing great and it is all about small steps, small achievable goals and these will extended as times goes on and the confidence will grow.

It has been like doing a boxing match and a marathon every day he was in hospital and this was done without any training......... it will take time.

((hugs))