I had a stem cell (bone marrow) transplant. AMA.

[Babamamananarama]

Last year I had a stem cell transplant for aggressive, refractory lymphoma, which had failed to respond to the first line of chemotherapy. The stem cell transplant was pretty horrible but has has put me in remission.

I was in hospital for about a month in total, mostly in an isolation room, as I was extremely susceptible to infection. My children were 7 and 4 at the time. It took months to recover from the effects of the chemotherapy which is extremely strong and has pretty horrific side effects, but I'm now nearly back to normal.
AMA.

I was following this as although I hadn't thought of a question, I was interested in your responses.
I know of a child currently in isolation after a transplant and I'm following his mum's insta posts and stories, it's heartbreaking.
Hopefully this bumps the post

Also, I'm glad you're better

Thank you florence.
I can't imagine having to watch your child go through it. My poor mum found it really hard.

Hi babamama, I hope you don’t mind me asking a few questions (I realise this thread is a bit old) but my dad is about to go through two autologous stem cell transplants (one, and then once he starts to recover another one).
That must have been so tough going through it with young children and having to be away from them. Was yours a donor transplant or your own stem cells? What was the worst thing about it? What can I do/say to help my dad? thank you

@Babamamananarama

@Enterthedragons you’ve got to tag the OP otherwise they’re very unlikely to see this

Hi @Babamamananarama. Thank you for starting this thread. A very dear friend of mine is soon to have a bone marrow transplant following 2 rounds of chemo for AML. I'm interested to know what a bone marrow transplant actually entails. Is it a single operation? How do they put it in? How do you feel immediately afterwards and in the weeks afterwards? How long until you know if it's "taken" or if your body is rejecting it?

Glad that you are recovering.

Was your donor known to you or a stranger?

A family member of mine is now 5 years in remission following a stem cell transplant from an anonymous donor. They contacted the donor to thank them but never received a reply (fair enough).

I hope your recovery continues to go well.

Hi @1Wanda1

Firstly I'm sorry your friend is having to undergo treatment, but it will mean a lot to them that you've sought to find this stuff out.

A bone marrow transplant or stem cell transplant (same thing) isn't an operation. The procedure itself is more like a blood transfusion.

What happens is that they give you some very strong chemo, usually over a course of a few days, which will kill off your own bone marrow (which is where blood cells including cancerous cells are made).

The chemo makes you almost completely neutropenic, which means you have almost no neutrophils in your blood to fight infection.

Without an infusion of new bone marrow cells, the chemo would leave you so weakened you would be at very high risk of death. But the infusion of stem cells (which are given like a bag of blood) is effectively a rescue or like a system reset. The donor cells travel in your blood stream to your bone marrow and begin generating new cells, effectively starting a new immune system from scratch.

After about 7-10 days blood tests reveal that neutrophil levels have started to rise meaning the donor cells have taken.

After the chemo/stem cell infusion, you are moved to an isolation room which is kept as sterile as possible. You are allowed very limited visits and everyone who enters has to wear PPE . You can be in this isolation room for a few weeks until your blood levels improve enough for it to be safe to go home.

Most people feel pretty wretched for the first week or two while the chemo effects play out - the side effects are unfortunately pretty brutal.

Recovery is slow and it takes several months to get back to feeling somewhat normal. It can affect your energy levels long term.

There's very good info about the whole procedure on the Lymphoma Action website.

I wish your friend an easy ride, good recovery and success with their treatment. It may be three months later that they get a PET scan to assess the success & whether or not they've achieved remission.

@Enterthedragons I'm sorry your dad is going through treatment too. I had an autologous SCT. I've not heard of someone having 2 transplants planned - do you mean they plan to do the chemo, then one stem cell transplant, then as he recovers give him more cells? Presumably they won't put him through the whole protocol twice? What kind of cancer does he have?

For me, the hospital stay in isolation was hard, I was very unwell and felt awful for a good few days. My husband would visit daily and give me a foot massage which was always appreciated and some support with eating, which was a big challenge for me as I lost the ability to eat for a few weeks due to the chemo. My family and friends also made a load of recorded messages which my husband put on my phone as a playlist and that brought me comfort during my hospital stay when I couldn't read or watch TV but could listen.

It was amazing to get home, but the slowness of the recovery was also hard at times. It helped to be reminded that my entire job was recuperating, and that I didn't have to do anything else. I took pleasure in small things like sitting in the garden and the flowers beginning to bloom. It really is one day at a time for a while, with very small improvements day by day. He will need a lot of care/support from someone, can you help to relieve your mum/his partner if he has one?

If you can keep an open channel of communication with him about how he is honestly feeling emotionally that might help too - are you able to hear the hard bits and sit with him through those?. I used to get furious with the people trying to get me to look on the fucking bright side when I felt dreadful/was still battling a long, slow uphill recovery.

Do you need to take immuno suppressant drugs for life?

And also has it changed your blood type or DNA?

Reading as it interests me! I'm neutropenic because I kill off my own neutrophils (very helpful thank you body) and it makes me really tired

@purpledalmation No, I don't have to take immunosuppressants. I had an autologous transplant using my own stem cells, so there's nothing foreign for my body to reject.

It doesn't change my blood type or DNA.

It does mean I need to have irradiated blood products if I'm ever given blood/plasma, and I can't give blood myself.

My new immune system may never be as strong as it was before. This winter I caught several bugs and they will put me in bed for a few days rather than being able to soldier on through. Some stem cell transplant patients have to have all their childhood inoculations again from scratch, but my team don't do that for some reason.

@Rebellious23 oh that is really really annoying! I bloody hated being neutropenic (I was neutropenic after my first 6 cycles of chemo too, and had 2 or 3 episodes of neutropenic sepsis during my treatment).