Fatigue, weakness and lack of appetite after stem cell transplant

Hi again SJW58 sorry for not getting back to you sooner but it's been a busy 24hrs...... yes, life can get back to some normality.

So from my experience having had 2 Allo SCTs (see my full story in this link> See my story)........ I experienced the extremes over of both my stays in the SCT and over the post SCT recovery.

My first SCT was a breeze. In the SCT unit I had no fatigue to the point I was using an exercise every day over my 28 days in the unit. I was eating completely normal and when I got discharged I jumped in the car and drove the 3.5hrs home from Glasgow back to Inverness.

I had no problems over the oths post SCT but was still very careful with regards to infections....... I had no infections.

For a few reasons my first Allo SCT did not work....this was a chance we took as we were using a new-ish conditioning for my type of NHL....... and if it worked I would have no post treatment problems....... well they were correct but unfortunately the graft failed by Christmas....... this was Christmas 2014...... I went back for my second Allo SCT in Oct 2015..... and the story was rather different.

You can see my full story in my profile but I started off with 3 weeks/30 zaps of radiotherapy then a week of chem....... i did ok-ish with this but I was on a massive amount of antihistamines so I did sleep a lot (I have bad drug/animal allergies) 

On the first day of getting my Stem Cells I had a very bad reaction and was very very sick........... that put my heart crazy so landed up in the CCU Critical Care Unit for a few days...... they got everything sorted. Got back to the ward and had my second set of Stem Cells and my heart went off on one again so back to CCU.

I just did not feel well and due to being very very sick I stripped the lining of my stomach so just was not eating much other than liquidised soups. I was also in bed basically for 3 weeks with the only time I was up was when my wife insisted that I was 'manhandled' into the shower each day....... my body was exhausted. 

When the team said I could go home I left the unit in a wheelchair and had to use sticks to do a few steps....... I was like this for a few months and was getting physiotherapy to get me back up on my feet.

These signs are every where in our local hospital and what it says is very true......

....my body had aged 30 years in that 3 weeks.... so I left the unit 90 years old.

I was not eating well for about 3-4 months and was only having regular small cups of soups - my gut was slow to recover....... but one day this fixed itself.

As for the fatuge this took a good period of time to overcome....... and interestingly the first infection I had was not until 10 months after my second Allo and this was followed by further infections so over 18 months I was 5 times back in hospital (32 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Neutropenic Sepsis x2..... pluss some other post SCT leftovers

Having said all that I have no regrets in going on the journey..... turned 68 last month and living a great life.

Hey Mike!

I so appreciate your very detailed answer. 
sounds like a bit of a lottery given you had 2 such different reactions. So glad you got through it all and have some good quality life subsequently! 

Until I got sick, my friends said I was the healthiest person they knew. I have worked in the fitness industry for 25 years and climbed hills and danced for hobbies! Healthy diet, never ill etc. Ah the funny twists and turns of fate! 

So, I hope I’ll go into this well with no comorbidites and relatively healthy organs. 

To be honest it’s relapse that worries me more than anything but there’s no much I can personally do to prevent that apart from eating well, exercising and getting fresh air and sleep! 

Thanks again for taking the time to write this Mike! Very helpful! 
Best, 

Sarah 

Until I had my Second Allo SCT the longest partial-remission I had was 9 months so I was basically on treatment for 16 years and even although my asbestos was seen ‘as a problem’ and the fact that I could not be put into remission my end result is testament to what SCT can do…… even in the hardest circumstances.

This is why I have the Nelson Mandela quote as my signature.

Unfortunately as well some patients can get gvhd from an Allo sct and this too can affect your appetite and fatigue for many years. However not all Allo sct patients get gvhd.

Hey Hardtimes!

I hope you are ot having hardtimes right now..

Did you have an alloSCT. If so, what was your personal experience of side effects. Did you get GVHD? 

Any info would be much appreciated.

Sarah

Hi Sarah,

unfortunately I did get gvhd 6 months after transplant and now 2.5 years after transplant I am still suffering from gvhd. My main gvhd issues I have presently are very tight skin due to my donor cells attacking my skin cells which have caused so much fibrosis on my skin fascia that I can hardly walk and now spend most of the day sat in a chair. Hoping to soon have a new drug that may help loosen my skin and fascia up. Also my appetite has gone and no really enjoy food anymore. Unfortunately gvhd is very real and affects many Allo sct patients and the gvhd symptoms are so wide and ranging. If you wish to know more search for gvhd on Facebook but these are people who are suffering with bad gvhd. Not everyone gets it and some can be very mild. I also suffer heavily from fatigue from gvhd. Good luck with transplant and hope all goes well.

Thank you!

And I am so sorry to hear about your fascial tightening. That must feel horrible and be very debilitating.

Yes, GVHD really concerns me. 

Altnough I have  a very aggressive type of cancer with a very poor prognosis, I am currently very strong, fit and active thanks to working in the fitness industry for 25 years. So, I do worry about my quality of life. BUT that being said, if I relapse, I could be dead in 2or 3 months! It's a difficult choice. But at least it is a choice at this point....

And thanks for your good wishes. I appreciate that.

All the best to you! I hope that drug comes soon. 

I know exactly how you feel. I had bpcdn and my prognosis was not good without having an sct. So I went along with it. I was told by doctors that I may get gvhd and it may be little which is good. I did not realise how bad iit could be and how it has changed my life.  I was not really warned by doctors how bad it can be. I still keep hope that I will improve as my bloods etc are all good now. However like me you really have no choice and need to have the sct. The sct is not easy either a very horrible process but you eventually get over it. Before you go in make sure you eat healthy and it is good if you put on weight as you will lose it while having sct as for a while you probably will not feel like eating anything. If you can while in hospital walk as much as you can as your strength soon feminises however fit you are. Always try and wear a mask as much as you can so you do not get infections from anyone else as you will be neutropenia for a time while you have the pre conditioning chemo which will be stronger than what you have had before and your body will suffer more from it and because you have probably had other chemo to keep your cancer at bay your body is already weaker than normal and it will take longer for your neutrafils to recover than they had previously.  After you have had your sct and your neutrafils have recovered to say above 7 you have a fairly good immune system back but you can still get gvhd anytime between sct and a year or so after transplant. You can leave hospital and feel as though you are starting to recover then bang up to a year later but normally around 6 months your immune system from your donor decides it does not like your existing cells in your body so starts attacking them.  Still keep masked as much as you can as any little cold or virus can trigger gvhd to flare, for me starting to re take my inoculations such as covid and flu vaccines sparked off my gvhd from an immune response. I advise when you get your injections after you come off the immunosuppressive about 6 months after sct have one inoculation at a time so as not to strain your body too much. Contact me more if you wish to know any more about sct or gvhd and I will try and be as honest as possible. It is not an easy lourney but you will get there.

Hi Hardtimes/Sarah, 

Ive had BPDCN and know exactly what your saying about the recovery process, I took a HLH infection after my bone marrow transplant, numbers were rock bottom, fatigue and appetite was bad, I lost 2 stone in weight, but my appetite came back, its not as good as it was but its ok, and thwe weight has come back again, fatigue is still an issue, its been 15 months now since my transplant and ime still tired, but my numbers are only starting to rise now since January, so I am taking this as a start to my recovery, as ive been on boosters since the transplant, and slowly starting to come off them now, so hopefully they will continue to rise, but everybody's recovery is different, it is a difficult journey, but keep positive and you will get there.

Hey  mike . Glad you made it to here .  My wife’s journey started in 2006 . A small unusually coloured spot on her arm .  I ve lost count of the number of chemo, car T cell. Etc , most recent November 2023 on going still in hospital  after sorta doing ok , till the effects of the 3 months of steroids showed up. In the form of loss of leg muscle & energy. The last2 months have been extremely stressful. After being ok to leave ( Derriford) hospital to go to a cottage hospital for “rehab” well that didn’t happen .  10 days in the small ward she was in got Noro virus . Really kicked the life out big time Ithought she was off the other realm a few times STRESS !!   Not eating not drinking  loosing weight. She was transferred back to Derriford .  So 

a month on there’s a roumour she may come home . 2 stone lighter .weaker .

we were both hostages in the Caucasus  for 14 months ,I guess that was a training ground .  So you your nelson Mandela quote is on it.    Ours was more , 

one day this will be history.    Keep  well 

J.J