Transplant imminent

Hi Fifimac,

That is fantastic news. I hope that everything goes well for you. If you want any tips for coping during treatment, let me know (I had mine in September), otherwise wishing you the very best of luck Xx

Hi again Fifimac and good to hear that things are progressing in the right direction.

What hospital are you having your SCT in?..... some of the memebrs may have been in the same place.

The world wide donor register is amazing and I was told yesterday by someone who is getting ready for their Allo SCT that there are now over 35 million people on the list world wide and he actually has 17 matches waiting for him........ I did not need to go far as it was my brother who was my donor.

Have you been told what 'Conditioning' treatment will be used to take down your immune system...... getting you ready to get your donor cells?....... there are a few types, if you know this do put this information up as others may well have had the treatment.

The 17th is not far away so you may find it helpful to have a look through this old post as it’s the place where group members have collected the things that helped them go through there time in the SCT unit - Checklist for SCT Unit

This link is taken from the Lymphoma Action site but again has some good first hand tips for the SCT process Top tips for stem cell transplants

If you have any specific questions do ask them and we will do our best to answer them...... you may want to look at some of the members profiles (hit their community names) as they may have put their story in there.

Hi Fifimac

Wishing you all the very best on the 17th with your STC. You can do it!! I was in you position in September 21 now I am great! Nearly back to normal xx

Hi Marden,I hope you dont mind but you sound really positive . I had my SCT  last August and still struggle with fatigue and negative thoughts.You say nearly back to normal.Are you on maintenance therapy of lenelomide?

Hello J119

No I am not on any maintenance treatment at the moment. This is because I had two ICU admissions with sepsis and they couldn’t find the source of infection. I was given immunoglobulins which I get once a month and it was the first thing that turned a corner for me. I will go on to maintenance therapy once the immunoglobulins are stopped ( I don’t know when that will be yet ). Bear in mind you are still early days. That awful fatigue will eventually recover and if you can try to keep mobile as much as possible… hard as it may be. I am positive when I think of what I have come through so far. You will get there. I suppose when I say normal I am not the person I was before my diagnosis but this is a really good normal for me now and I will take it. Take each day as it comes. You will hopefully look back someday and wonder how you got through it. Could you try and speak to one of the specialist nurses regarding your negative thoughts? They could maybe help you out or guide you to someone whom you could talk to.

Very Best Wishes to you and I am happy to answer any questions on my experience

Transplant update  

Hi Marden & Highlander 

My transplant has been delayed until June. 
My MRD was above 1% so the team felt it would be more beneficial to try another round of chemo to try and reduce the MRD. 

I started my treatment on Wednesday so hopefully it’ll do the trick  

Thank you for good wishes though , really lovely of you both.

I’ll keep you updated

Many thanks again x

Thanks for the update Fifimac as had as it is to have your SCT delayed it’s makes total sense to ensure that you are in the best possible position physically to go into the process. It was impossible to get me into remission for both my Allo SCTs so we were winging it a touch but the roll of the dice paid off ((hugs))

Hello Fifimac

Ach that’s disappointing for you…. But the benefit outweighs the risk. Keep you chin up!!

every best wish 

Hope you’re all well !
The latest news from me …

Transplant delayed in May , had another round of Chemo which again I tolerated well thankfully.
Unfortunately about 2wks after treatment stopped , I developed an infection in my Hickman Line. I spiked a temp of 39 degrees, for a couple of days I actually felt like a patient. The Microbiologist suggested trying to save the line so I was on IV antibiotics, they were also locking antibiotics into my line.
Eventually it was decided to take the line out, which I was happy with.

Forward a few weeks and my transplant admission date is 19th June.
The last chemo has reduced my MRD good news.
However my donor is going on holiday so admission date has now been moved to 4th July !!

3rd time lucky lol.
Thankfully I am feeling fine and at home again.

Hi Fifimac and good to hear you are feeling fine…… I was very lucky in that both my Allo SCTs (my brother was my donor) went ahead without any delays but it’s not unusual for things like this to happen - indeed 3rd time lucky