Stem cell transplant

Hi Charlie 3 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 with a rare, incurable but treatable Cutaneous T-Cell NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well…… especially as I have had two Allo (donor) Stem Cell Transplants (SCT) with cells from my brother.

Yes SCT can be very demanding but for me it saved my life.

You can see my story in this link > (See my story) but long story short - my first Allo SCT was back in June 2014, it failed by December 2014 so I went back in Oct 2015 for my second Allo SCT and remission was achieved in Sep 2016 and I am living the dream living as good a life as any 67 year old can live.

SCT is a rather unique journey so we do actually have a dedicated Stem cell transplant where people from different  blood cancer support each other on the journey.

This is some good information on a (autologous) stem cell transplant

Do ask your questions as we will help as best as we can.

Thank you for your response it is good to hear someone else’s experience. For me Lymphoma helped to find a breast lump I had no idea about on the petscan. Fortunately I had breast surgery a few months back which was successful. Just to get on top of the Lymphoma now.

Sorry to hear about your breast surgery but good that this has been successful.

SCT is a rather different journey but can bring great results. You may find this link helpful as it has collected some good news stories about others having SCT…. SCT Success Stories

((hugs))

Very sorry to hear this. I was diagnosed with a relapse of AITL, even though I had never been originally diagnosed with it. However, it was preceded by PTCL-NOS which apparently mutated into two sub-types. I wended up with both as well as MDS. Living in the States, I underwent a haploidentical transplant in 2015. I am now 7 years in remission from both lymphomas, and 5 years in remission of the MDS. In my case, it arrived at a cost, but I consider that to be the "cost of living." All the best to you, and bear in mind that there is today more hope than ever. 

Hi ! I'm almost 3 months post stem cell transplant - if you wanna ask any questions- I'd be happy to try and answer. All the best !

That would be great … how did it go how long did you spend in hospital?

Hey Charlie 3, 

So I was diagnosed in April 2021 with DLBCL stage 3. I went through 8 rounds of RCHOP and seemed to be responding well and in October 2021 was in remission. 

I then relapsed in March 2022 and had a cancerous cell mass removed from my small bowel.  

Because the cancer came back so fast and more aggressively this time, they were sure that it would eventually come back so I was referred to the Haematology department and they then took over my care. 

Over the next month I had many meetings ,bone aspirations and blood tests etc and eventually a PET scan which was a 3 on the chart which meant they weren’t absolutely 100% sure I was clear or not. 

As they were so unsure, they decided that the next step would be salvage chemo to prepare me for a stem cell transplant. 

They wanted to do all this just incase. So wether there was anything to kill, I’ll never know, but it was the safest bet.

In June I had a port inserted & had a lumber puncture to check if cancer had spread into my spine and then started salvage chemo, I wanna say 3 rounds (was all a bit all over the place because after my first round I had a bad reaction to the cisplatin in the chemo) I ended up in ICU with chemo complications, my kidneys almost failed and also had covid. 

One of the worst times EVER!! BUT TEMPORARY !!

Once I recovered from that I had another PET scan which came back clear, although I still had to go ahead with treatment just in case there was something microscopic that wasn’t detected in the scan. So one more salvage chemo round. 

In August I went into hospital for my stem cell harvest. Now because my arm and hand veins were so messed up from all the chemo in 2021, they weren’t able to harvest my cells the usual way. So they had to insert a femoral line into my inner thigh. 

At first they said they’d do it whilst I was awake and inject me to numb the area. This didn’t go too well as I started to feel it and it was so unbelievably painful, I eventually made them put me under.

So a few hours later I woke up with this line in my thigh which ached a bit but that didn’t last long and it was fine. 

Hopefully you’ll be able to get it done the normal way, but just warning you as I wasn’t aware that this would be the case and it wasn’t great.

I had 2 days of harvesting as they didn’t get enough cells the first day but this was pain free and I think I slept through most of it. 

They then removed my femoral line which was incredibly painful as no pain relief or numbing. They literally yanked it out and then compressed my wound so I couldn’t bleed out. Again NOT fun at all- very sore but its very quick and the pain is temporary. 

Ok so then I had about 12 days off at home to relax and had a meeting with my transplant team to hear how things were gonna be.

I had to prepare a lot mentally and physically before going in and get my packing sorted (I was told its usually 3 weeks in hospital but to expect 4 weeks, so that I didn’t get upset if I had to stay longer).

A list of things I took with me : 

• food ( now you’re only allowed canned goods, individually packed snacks and drinks) there was a mini fridge in my room. You can’t take anything in fresh as it can carry bacteria and the transplant unit is a germ free space. 
• I took things like : cookies, juice boxes, canned soup (great for when you get bored of hospital food or mouth hurts from mucocitis) and instant noodles. Sour sweets (these usually help with my nausea) 
• All my clothes and extra bedding had to be washed and brought in unused (to prevent bacteria entering my room) 
• I literally lived in leggings, and big t-shirts and slippers. 
• Unscented body wash (the smell of scented ones would always make me nauseas).
• Colouring books, sketch pad, downloaded Netflix movies, podcasts, word puzzles. These were used in the first week when I had intense chemo but I got fuzzy eyes from chemo which eventually made it hard to read/watch tv or draw properly.
• Extra loo roll and flushable wet wipes (as hospital loo troll is thin and not soft) - helps when or if you get diarrhoea.

Preparing physically I had to make sure I was as fit as I could be. You spend a month not being too active (although in the first week of chemo I walked the corridors a bit and used the in room cycle machine). That didn’t last long as I got an infection and was then confined to my room for the rest of my stay, so I didn’t infect any other patient.

We were all separated and so you don’t interact with anyone except the nurses, doctors and visitors (i was allowed 2 guests per day, who had to wear full scrubs and masks) 

Mentally, Im not sure I knew what was coming so that was hard to prepare for. I just knew I had to try and be positive as much as possible. 

This became increasingly difficult as the time went on. Being isolated in a room for a month is so hard. 

Ok so the first week was hardcore chemo (i can’t remember what it was called but it was way more intense that RCHOP!!)

Symptoms : diarrhoea, nausea (minimal vomitting) 

The day of transplant was the easiest day (day 0) . The nurses all came in and my boyfriend was with and my parents on video call. 

They said a prayer and then started pumping my stem cells back into me, through my port- this took a few hours and I was just sleepy but no pain at all. 

Then the hard part starts…..

I got mucocitis which usually happens to various degrees but mine was the usual- although I found it so awful. Your mouth starts to hurt, swallowing and eating and drinking become impossible. My mouth was filled with thick sticky saliva that I either had to spit out every minute or scrape out with a tissue ( I literally went through a box of tissues a day). 

My tongue started to peel and the back of my throat. Its absolutely horrendous and I didn’t know it would be that bad ( I expected ulcers but this was on another level) 

I don’t want to scare you and this may not happen to you but I want to be honest and prepare you. 

Because I couldn’t eat or drink I was fed through my port (the nasal tube didn’t fit my nose). I was encouraged to drink these weird milkshake and juice drinks which were only tolerable with a lot of ice. But I didn’t do too well with those. I also had to use mouth washes to try and keep my mouth as clean as possible. 

Showering became such a chore. I had zero energy so some days I couldn't even do it. 

I had nausea and diarrhoea and because of the mouth pain and isolation I became very upset and cried a lot. I also had a bad cough (scans showed no major issues but it lasted for about 3 weeks). 

You're also attached to your drip stand 24 hrs a day for a month - so that's hard when moving around the room and to and from the bathroom. 

They do give pain relief which definitely helped. 

I couldn’t see the light at the end of the tunnel so for about a week and a half after transplant I was mentally in a dark place. 

Slowly things start to get better I PROMISE) . It so hard to see it but it does. 

I left only on day 15 after transplant (so a total of 23 days in that room I think) . I was only allowed to leave once I started eating myself and had no temperature . 

Oh yes and they also check temp, and blood pressure all the time -interrupted my sleep a lot. I would try sleep as much of the day as possible so I wasn't awake to feel all the feelings. 

Because I was in such a state all the Netflix and books etc I took weren’t used much as I just couldn’t concentrate at all. 

The first few weeks at home were tough , still coughing and lots of phlegm, no taste so eating was a real chore. I could barely do anything without being out of breathe and everything took longer and a lot of resting after each little activity, I even had to rest for at least 10 minutes after showering (that was very tough). Be prepared to be totally exhausted!!!!

Im slowly getting my energy back, the taste buds came back after a few weeks and I’m still on the special diet (its like a pregnant woman diet - no raw foods and other things which they’ll tell you about). 

I am now socialising in small groups and can finally enjoy a nice glass of wine here and there.

I have my PET scan next week , to see if I’m all clear and then in December I'll hit 100days and my immune system will be normal again. Its still going to be a while before I feel back to my normal self and hopefully Il have my port removed before Christmas and then all my immunisations again (they are wiped out after a transplant) in January. 

I know all I’ve said is scary sounding and you may not have any or only a few of my experiences but its better to be aware of what could happen so you can prepare yourself. 

If you have any other questions then please ask. 

I wish you so much luck and strength through the next few months. 

Just remember in your darkest hours ..... it can be done and you WILL get through it. Im proof! 

All the best,

Klip 

Hello. I’ve just returned home from my stem cell transplant. My husband wants to let people in our house, I’ve only been home a night, I’ve been very sick this morning. Before I came home he agreed with me to ask people to wait until March, but now he’s wanting to let people in. 
what do I do? Do I allow them in?

Hi Flojo and well done getting through this and home.

You initially will have to say no. There are some bad bugs/infections going around and you don’t want to catch them.

You must be very very carful for the first few months as your baby immune system will not be able to fight infections.

A little infection that a healthy immune system can fight no problem can for you, be a massive challenge….. and you don’t want to end up in hospital on IV antibiotics.

So infection control is important, let yourself find your feet, your body has to recover and as the better weather comes in you can open the windows and get some ventilation going and ‘if’ people are ok, in coughs etc then start with very small numbers….. max 2.

You may want to have a read through this discussion in our SCT group as it has some good information.

Life after a SCT - A Survivor's Guide

If you are being sick call this in as your team as your team do want to know what is going on.

((hugs))

Heavens no! This is not recovery from a simple operation! You have only enough immune system to be safe to release, and no more. Your immune system is not yet even that of a baby! You might ask him to prove his love for you by shielding you from even common colds - not to mention the truly ghastly bugs out there! You can ring friends up when you feel up to it. You can meet and converse with them on the web. This time is YOUR time. IMO, you have been through a near-death experience! Let time heal those wounds!

Have him message me. I will set him aright!