Can I ask NHS to store my stem cells?

Hi Skipper88 and welcome to this corner of the Community.

I am Mike and help out around our blood cancer groups and the SCT Group.

I have had 2 Allograft (donor) SCTs the first two n June 2014 with the second in Oct 2015.

Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 10 years out from my last treatment, I turned 70 last month and I doing great.

I have only talked with one other person in the past 10 years who have had 2 Allograft SCTs….

Just for reference…. I had both my SCTs in the amazing Beatson in Glasgow….. 

As for Myeloma I have never talked with anyone who has had 2 Self (Autologus) SCTs……… but plenty people who have had both an Autologous then an Allograft SCTs.

You can certainly ask your team but you may be asked why?…… what would we need them for?

Hi Mike,

Great to hear that you are doing well since your transplant. 11 years and counting, that’s amazing!

I am fairly new to the topic and there is a lot of information to process. I understand the rarity of a second Autologous SCT may have to do with the difficulty of harvesting stem cells for a second time. Hence the question: if I am getting only one shot at harvesting, should I try and save some for what is termed Salvage ASCT, acknowledging this is only a possibility and may only be the preferred relapse treatment option under certain circumstances?

We are all dealing with probabilities and possible scenarios and the stakes are high. Having consulted my medical team, it looks like I may have a say on this matter, so I am trying to be as well informed as possible. 

I am finding it hard to see the downside (some extra space in the freezer?)

Hi Skipper 88 , I had a successful SCT for MM in April 23 .For the record I will turn 70 in May 26 and am also treated at ARI . The journey to harvesting cells was bumpy for me but in the end after 5 hours of collection in one session e ough cells were harvested for a transplant and enough " left overs to be frozen   .From what I remember this was always planned if there were enough cells harvested. I had extra days of injections to encourage cell production .It's not an exact routine I don't think as everyone responds differently. 

I'm so sorry you find yourself in this position bring so young , however there are many new treatments becoming available all the time so the future looks good . 

I'm leading a very good life now an d at present writing this from Australia where I'm  visiting my family for  Christmas. 

Something I didn't feel was possible this time last year .

I attend the Myeloma UK support group in Aberdeen  The group has given me alot of support and encouragement to get out in the world again.  

Best of luck you 

Sue 

Thanks for your reply, Sue.. When faced with big decisions like this, being better informed helps enormously. As you say, we can’t predict exactly how many cells can be harvested. Back to decision making under probabilities and scenarios. Sounds like it is entirely possible to freeze extras, if successfully collected.

I have reached out to the Aberdeen support group coordinator. We have exchanged our contact details. I am looking forward to meeting everyone else.

It is amazing that you managed to travel to Australia. I wish you and your family a wonderful Christmas!