Stem cell transplant for aggressive fast growing lymphoma

You are on a physical and mental rollercoaster so you are going to be all over the place but I read some good encouraging information in your post, yes the space between your ears is a whirlwind but its all about taking each day at a time and not running way ahead.

Blood transfusions are normal and designed to keep you on track....... and random emotional episodes just appear.... even a big Highlander was like this.

Hickman Line is normal for SCT as its more reliable than a PICC.

Yes the information will have come thick, fast and can be totally overwhelming but its all about filtering out the most important parts to focus on. The main thing is you can't control any of this...... that is your clinical teams job, your job is to jump through the hoops and do what you are told 

When you say you have a Zoom meeting with the bone marrow unit..... is this the first time you will have talked with the SCT team or is this something different?

It will move fas as they are among to do this once you hit that window of remission to get the cells, do your conditioning and get your new immune system up and running.

Planning your post SCT recuperation is important but you will most likely will pick up an infection in these early days but your team are so used to this and will deal with it.

I am well and we had a great few days catching up with our 4 granddaughters 3 we have not seen for 9 months

Keep posting as this helps you unpack and we can work out what you need to know to help you walk this walk ((hugs))

Hi Mishy

So I am going through the exact same thing as you - I could have been reading my own post. I’m also having my stem cell harvest on Monday 14th/Tuesday 15th. And I’ve also had to have a couple of units of blood in the last cycle. 

I had 4 rounds of DA-EPOCH before they realised just before my 5th chemo that my lymphoma had grown between treatments. So I’ve been switched to R-ICE for my last cycles. R-ICE hit me like a truck but I do feel like it’s made a difference, my breathlessness has finally gone and I feel loads more normal so fingers crossed this one is working. I’ll have another cycle of R-ICE straight after my stem cell harvest and then, if my PET scan shows remission, I’ll be having my transplant probably mid July. 

I had a long meeting with my stem cell nurse today to talk it all through and ask questions, like you my head is spinning and I’m all over the place emotionally. Really frightened about the recovery from stem cell transplant and what my chances are of being free of lymphoma long term. 

It has helped me a bit to hear more about the transplant and recovery process and to break it down into smaller chunks of time in my head mentally. My nurse said it’s likely that the worst side effects will play out over about a week, and that feels a bit more manageable to me somehow. 

I’ve also found it helpful to think of the stem cells as the medicine which is going to help me recover from a really really intense chemo cycle. And I’ll have made that medicine myself. I’ve been on the stem cell donor register for years, but ironically I’m ending up donating to myself. So I’m trying to think of my stem cell harvest being an act of kindness to a future me. 

It is still so much to take in and I still can’t really believe it is all happening to me. 

Anyway, I’m here to be your stem cell buddy if you need one. 

Hi Quadlibet,

I just wanted to write to say I hope all goes really well for next week and also to say I think you have got a great attitude. Seeing the stem cell transplant process as a necessary evil to get you to better health is definitely a good mental place to get yourself in. You are likely to feel worse before you feel better during the process but try and hold onto the idea that you are on the right path and will get where you want to be some time soon. I was a similar age to you and so had similar worries and sometimes it can get very daunting when you start thinking of futures, especially when you’re probably very used to planning ahead in your job. There may come a time if it is not already now where you have to temporarily switch all of that off and just focus on the short term day to day and how best you can get through that. In my SCT experiences (the second was worse than the first), I had to let go of trying to control too far into the future and try to hone in on how I can best get through the present. It might not be what you are used to doing but it might be the best way to get through the process and then hopefully soon enough you will start to build confidence that everything has and is going well, you’re beginning to feel more yourself again and can start getting back into your more normal way of living.
I hope this helps in some way and here’s hoping everything goes completely to plan.

Greg