Regeneration pain

Hi  and welcome to our corner of the Community.

I had two Allo Stem Cell Transplants with cells from my brother and I can totally get the ‘regeneration’ term........ he is having growing pains as my muse called them. First SCT the pains came and went during about days +10 to +12/13

Following my second the pains came and went for months but I took this as an encouragement as to me, it was my new bone marrow growing strongly. Some of the pains were very painful so had Oramorph to self administer if required.

He needs to try and get some simple activity going as this will help over come the fatigue.

This is very early day’s so give it time to bed in and you will see improvements.

My appetite was dreadful for 3-4 months post Allo number two but again this will clear up.

You may want to have a look at this thread Life after a SCT - A Survivor's Guide where we have collected our post SCT stories.

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Always around to help out.

Hi Lilv,

Just wanted to reassure you that I had excruciating back pain when the bone marrow started producing cells again after SCT but it only lasted a couple of days. I was told it was a good sign that the bone marrow is producing loads of cells. Hope your Dad feels better soon.

Greg

Thank you so much, it’s reassuring to hear other stories and this will past. These forums are so helpful! 

My pains started during the night following getting my Stem Cells..... I was getting shooting pains right up the length of my spine. These pains were every 60secs the nurse said 'you will be having the birthing pains'......... Well that is so true as my 'All new self' was giving birth.

Always around to help as best as we can.

Yes the nurse said the same to him and said it would feel like child birth pains! But my dad said he doesn’t mind the pain as it’s a good sign

it has started to slightly ease up today but the main problem he seems to have now is sickness!! One thing after another it feels.

thank you. 

Hi again, good that the pain is reducing but bad that he is having sickness...... this unfortunately is how some folks have to get through the early days post SCT.

You don’t say what type of SCT he has had, if it’s an Auto SCT (his own cells) he should recover quicker than if he had an Allo SCT (cells from a donor).

In these early days you do have to expect the unexpected....... but the good thing is his team will have seen it all before so let’s look for his team to find a fix for the sickness ((hugs))

He had an allo sct, so we’re also expecting some form of GVHD to crop up at some point but hoping it’s manageable. 

We knew this was going to be the toughest stage of his journey, but I think we expected him to start feeling better but he still is not great! His white blood cells and neutrophils are slowly coming up now tho which the doctors are very pleased about! 

We are just focusing on the positives and the end result.

thank you for replying with your experience/what you have learned along the way sometimes you just want to know that this is normal and people have come out the other side!! 

Following my second Allo I was sent home on day +20 with my counts at 0.9.....but there were a few bugs had found their way into the unit so they wanted me out....... it took a number of weeks before my counts started to move and even then very slowly so I was self injecting G CSF Injections every night for 2 months post SCT.

GvHD will most likely come along and a lot of consultants will look for this to happen as it shows that the battle for supremacy in the Bone Marrow is truly going on. 

I had no GvHD after my first Allo and it failed very quickly but was happy for it to kick in between Days +85 - +157  then again on Day +284 (10 months) requiring three months of blood transfusions.

How is he doing on the Cyclosporin (Immunosuppressants) ?....... actually the very thought of having this drug made me sick every night when taking them.....they are not great ((hugs))

His counts are slowly creeping up so we’re hoping he’ll be home soon as even the doctors say you will recover quicker, plus there is also a virus going around the ward too so similar to yours we’re hoping they’ll want him out sooner rather than later. 

it’s such a balancing act, you want some form of GVHD but you also only want something minor! Such a double edged sword.

He’s not mentioned the cyclosporin being an issue... but there is a very distinctive smell and he’s really sensitive to anything atm very quick to feel sick!! 

Good morning and this is great news, it’s all about holding your nerve and keeping focused on the greater good in all this.

It was the actual smell of the Cyclosporine that made me sick, then the size of the big capsules made them hard to get down but we found that some fizzy water helped as it helped the throat muscles relax........ let’s look for him to get out and home.....but from my long experience  this will often be as quick as Pharmacy can get the sack of drugs put together lol ((hugs))