My Stem Cell transplant journey
Hi all,
I was diagnosed in December 2020 at the age of 38 with a rare form of AML called Myloid Sarcoma. This Is a tumor that grows off bones which contain myloid leukemia cells. Fortunately for me, the cancer cells haven't reached my bone marrow or blood like someone with typical AML. Mine, as already explained, were found in the tumor biopsy and it turns out its in my DNA of the cells found on the minimal residue disease test.
Anyways, had chemo until June 2021, went into remission....AMAZING! Until it showed its ugly face again in February 2022 😒
Was told the only curative treatment would be a stem cell transplant. So, April 2022, I started FLAG-IDA chemo regime to get me back in remission, which it did, however, my bloods took 4 months to recover enough to have my stem cell transplant.
So, my stem cell transplant began on 29th August 2022 and I was very thankful that my older sister was a 100% match. She lives in Spain, so had to come over for a few weeks for the process.
My stem cells went in on 7th September with my sister and mum present 🥰
All I can say is, it is THE most hardest and toughest thing I have ever ever experienced. I opted for the extra trial chemo, which caused me to get the worst mucositis mouth infection the doctors have ever seen. I had scabs in my mouth, throat and couldn't eat or drink. They offered a feeding tube but I refused and had I.V food instead (it goes into veins).
I unfortunately got so poorly, I had 3 infections at the same time and ended up with sepsis. My heart rate went to 242 bpm and they had to stop my heart twice to try and get it back to a normal rythm but unfortunately, it didn't work , so I was taken to Intensive care which was where I stayed for 8 days. It was touch and go, but with the wonderful care I recieved, I got through it. I spent just under 8 weeks in hospital and came home on my daughters 16th birthday which was lovely.
To top it all off, my father in law was diagnosed with terminal lung cancer whilst I was in hospital. He was given 8 weeks to live, and died 1 week later. I didn't even get to say bye and missed his funeral....utterly devastated!!!
Its nearly 4 months since I came out of hospital and I struggle daily, mentally and physically. I can hardly eat, some food tastes off and makes me gag as soon as I taste it. I don't even fancy eating half the time, even though my stomach is obviously empty as I can feel it. The eating side of it is really stressful, I was a big eater and loved my food before and I now get really really stressed when it comes to eating.
I am having to up my calories with the calorie shakes every day to try and maintain my weight. Lost 3 stone so far and still losing the odd pound here and there.
I struggle with aches and pains, can't walk a great deal as my back and hips are so sore the following day.
It is the longest road to recovery and me being me, I'm very impatient and hate sitting around and "resting' like I have been advised to do so by numerous doctors, nurses, friends and family members. That's where it affects my mental health. I just want to feel like me again!
My advice to anyone going through a transplant is to try and be patient (unlike me), listen to your body and always make sure you tell your consultant everything you are concerned about, it really does help put your mind at rest because every little thing will make you worry that its come back etc.
All I want to do is eat a big fat burger, have a few cocktails, and go out dancing 🥳
Comments
Hi Rayatt and thank you for posting.
I'm one of the patient champions here on the forum and had a stem cell transplant myself just over 10 years ago for ALL.
Your journey since your transplant is one that I think will be familar to many if not all of us here. You are right that it is an incredibly tough process to go through and something I think many people don't realise. I'm sorry that you didn't get a chance to say goodbye to your father in law, that must have been hard for you.
Like you I had extremely painful mucositis which reared it's ugly head the weekend I was discharged, resulting in readmission the following Monday. This hit me really hard and I was at an all time low, so much so that I was referred to a clinical psychologist as the medics were fearful that I'd given up.
Similar to you, the mucositis caused sores in my mouth, and my tongue was swollen, covered in what looked like white fur and was split and cracked. I wear a partial denture and was unable to wear this at the time. Eating was almost impossible and talking unbearable. I was on a daily course of multiple mouthwashes and medication to clear it up and survived on a diet of nutritional milkshakes mixed with ice cream.
Thankfully the mouthwashes and treatments had an effect and within a week it had subsided and I was able to go home and start my recovery. Even then though the recovery was really difficult. Like you I had no appetite, was nauseous and sick all the time, and any food I did attempt to eat tasted nothing like it used to. I really struggled to keep anything down that I did manage to eat.
It wasn't until I started to take steroids to counteract the early signs of GvHD that I really got any appetite back and started to build up some strength finally. The journey through GvHD added another twist, just as I thought things were getting better, and added another two years of ECP (Extra Corporeal Photophoresis).
For me thankfully things did finally get better and now it is all like it never happened. My quality of life is now as good as it was before I was diagnosed and apart from a life long maintenance dose of penicillin there are no other signs or effects of what I've been through. I'm so grateful to all of the medical staff that looked after me, they truly are second to none.
Your advice at the end of your post is absolutely spot on. You have to be patient, try to stay positive (even when it gets really hard) and tell your medical team everything that is happening to you. This forum is helping a lot of people as they can see others that are going through or have gone through what they are feeling and that helps us realise we all have similar experiences.
Hang in there, you will eventually have that big juicy burger, washed down with cocktails and followed by lots of dancing.
Best wishes,
Steve
Hi ya!
Thanks for your message. So lovely to see you are doing so well and your are 10 years post transplant. Fingers crossed I get to that point too.
I totally understand where your coming from with regards to the mucositis. It was the main thing that affected my mood. It really made me feel really low. I had the mucositis from the 3rd week which was mid September after the cells were put in and it didn't fully clear up until mid November. so had it for around 8 weeks. Even now I have numb areas in my mouth.
When you going through it you feel like your the only one, so it is reassuring knowing that, everything I went through and am going through is normal for someone who has had a SCT.
Take care.
Marsha