Feeling nervous about 25 year old sons upcoming stem cell transplant

Hi Cyprusfan,

My fiancé was diagnosed by ALL in 2018. He is now 25 years old . Stem cell transplantation is part of the treatment, don’t worry. He is gonna be alright asap. 

Hi Hayley Cyprusfan.

Its natural to be concerned seeing your son going into SCT.

I asked my wife Fiona for her thoughts as the person on the seat next to the bed and she said....... “This journey is all about the future, the future is all packaged in a few little frozen bags that look like nothing important - but it’s actually very important, it’s life changing. Keep you eyes and mind focused on the greater good in all this and expect the unexpected, you can’t control what is going to happen but you can control how you deal with it”

Do you know what conditioning treatment they will use to kill his immune system just before he gets his Sisters Stem Cells?

This is also going to be an emotional journey for your daughter as she is basically saving her brothers life.

For you it’s a double worry with both being part of this but these teams are at the top of their game.

It’s preparation time so have a look at this thread Checklist for SCT Unit

We are here to walk this with you xx

Hi Hayley,

I have a lot of empathy for you as I was feeling well going into my allo, and it is true that you will see your son’s health deteriorate by doing this treatment. However, as others have said, try to hold on to the reasons why your son is doing this and try to think about the long term. 
I went through a rough patch post-allo and for a period of time really regretted doing it as I was well before doing it so it felt like a massive mistake. It took a few months to get through it but the benefits are there in the long term - I will be 4 years disease free on Tuesday.

Greg

Hi Hayley,

we will all be supporting and rooting your children through this, you too, so do keep posting to let us know how things are going!

this site helped lots when our lass went through her treatments(still is, to be honest, though she has been cancer free since 2011now) 

sending big hugs to you all xxx

Hi Mike 

Conditioning will be 4 days chemotherapy (or lemon treatment I call it)/radiotherapy. 

I know the emotional impact on the 4 of us has been the hardest. Chloe is in uni and it was stressing her out big time start of December when we had the original transplant date as she had exams but luckily it was cancelled as MRD levels weren't quite there. 

Nicholas is in Brighton seeing his girlfriend at moment then they are off to a professional camera exhibition in London. His consultant said to go as he is fine. 

Myself and husband are still on the sick from work. We were thinking to go back when he goes in and I can work from home once he is out...I may rethink about going back then as don't know if I will be able to concentrate. In all likelihood my hubby will go back soon as his pay will go to half and don't want financial stress on top of this.  

We need a holiday....if only we knew pre 25th August last year what was around the corner out of the blue. I look at holiday pics from last July and think how oblivious we look in them.

Thank you all for your support.

Hayley 

Hayley, good to hear that Nicholas is doing sum stuff that takes his mind off the SCT.

Has Chloe had her Stem Cells harvested yet?

You both need to balance what is best for you and your husband - unfortunately the bills have still to be paid.

Make sure that you have checked all the benefits that are available - we were surprised when we got Macmillan to review everything so you may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

If you have looked at my profile Thehighlander my 2 SCTs were in Glasgow so my wife and I had to move down from Inverness - 4 weeks for Allo SCT number 1 and 7 weeks for Allo SCT number 2.

My wife actually continued to work flexibly before, during and after. She could work remotely so during the long days in the SCT unit, especially when I was fast asleep and would wake up and see her on her laptop.

Did his team say the actual name of the chemo?.......... did it include the drug Melphalan? if it does have a look at THIS thread as it has some very helpful information about getting the drug

I had two totally different conditionings for my two SCTs. The first included radiotherapy (Total Lymphoid Irradiation) TLI....... so this may be what he is having ?......... and a non Chemo Intravenous Conditioning called ATG (anti-thymocyte globulin)

My second conditioning FluMelAlem30 was much harder and did include Melphalan.

i do understand your thoughts about having a holiday....... we went to the USA 6 months before everything kicked off........ then once I went into my first SCT it took four years before my team allowed me to fly and go out with the UK........ but remember that my second SCT was rather challenging.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Always around to listen and help.

Hi Mike 

Not sure about the melphalan but I know another couple who we have met online. The husband has ALL B cell Philadelphia negative he  had melphalan. Had transplant week ago. However he didn't have radiotherapy as well. Our consultant said age will play a part in treatment plan. Nicholas having total body irradiation. Thankfully they froze sperm first week he was in Kings hospital London. 

Chloe having her GSF boosting injections from the 7th February I think for 4 days.  We will know more when we meet Nicholas transplant nurse Tuesday as he has pentanadine (pentneb) for lungs appointment as well.  We do have a concern about the hospital isolation room. No shower or toilet (commode) in use.  We spoke to a fellow patient who had transplant October she said to take bed wipes in. She is 69 and doing really good.  We emailed transplant nurse to confirm this. It's true.  Nicholas doesn't know about commode ...he will hate that!!

It's still surreal Mike 

Hayley

Hi Hayley, surreal is a good way to put it.....I call it my Magical Mystery Tour.

Yes his age will help him a lot and good that his sperm has been frozen....... but I have talked with others who have had TLI and went on to have family naturally.

I found the initial setting up of the Radiotherapy very hard work as I have Spinal Osteoarthritis so had to have strong pain meds for laying flat for a long periods of time on the table.....the radiotherapy it's self was no problem to have.

Very unfortunate about the circumstances with regards to the hospital room - every hospital is so different. I had to have a shower and complete change of clothes everyday when in the unit.

Actually the commode will not be a big problem.... yes not great. But I was required to 'collect' everything that came out of my body during the time in the unit!!!

When I was in The Beatson in Glasgow I was able to walk the ward corridor as the entrance to the unit had an airlock. But the unit has been out across into the new QE Hospital and was talking to a few folks who have had there Allo's and they are now required to be in their rooms 24/7 in complete isolation for most of the process - especially when the Bonemarrow is killed off and when the new cells are growing.

Pentanadine is rather disgusting but better than taking some of the oral meds.

When you go to the meeting the Transplant nurse will answer all your questions so have them all in a note book so you done miss something out....... also ask to visit the transplant unit.

My brother was in his late 60s when he went for his cells to be harvested and found it to be on problem - just a lot of sitting around. The G CSF Injections can cause some bone pain (as the stem cells are multiplying in the bone marrow) but some antihistamine actually helps the pain.

I was on G CSF injections for a good few weeks after my second Allo, my counts were not up to the required level but a few bugs had found their way into the unit so they throw me off home as it was safer at home.

Hi Mike

Thanks for your message. We have taken on board advice to take in disposable large bed wipes as no shower in room. The lady who recommended them is 69 and doing really well. That spurs us on. 

I don't know if nicholas will lose hair from chemo/radiotherapy over 4 days.  He has done excellent so far. Lost  body hair quite a bit first 5 weeks of treatment.  Started coming out a little on his head so he shaved it as it was itching.  But his hair is looking good now. 

If it's one thing this has taught me is never to be complacent about illness and think oh it won't happen to us.  Never in a million years did I think a previously 25 year old  healthy person would have this. Never been ill, never been in hospital.

Hayley x

Good morning Hayley from a rather damp Inverness.

It all depends on what exact type of chemo he will have. I lots my hair 3 times.......well defiantly and early during my 6 cycles of R-EPOCH. My first SCT was about 5 weeks after my chemo and had some fuzz growing, but it started to come out once I was into my first SCT so got it shaved off. I was clearly told I would lose it during my final SCT so shaved it off again.

With him having the challenges of his room and no private shower, I would be shaving it all off as it just makes life that more simple....... you need to ask his Nurse that question "will he lose his hair?"

Yes, we do take our health for granted and many sail through life...... often living an unhealthy life style with not a hitch......... but others can be caught out just like Nicholas.

Do ensure you have a good look at the Checklist for SCT Unit as there are some good tips...... you have to be prepared for this to be a 3-4 week minimum stay but as he is young he will recover much quicker than me as I was 58 and 59 at the time.

((hugs))