That’s great news you’re feeling better @petergreenfield, and fantastic the Stem cell transplant is going ahead. Sorry, I misunderstood your wording- I thought you were saying the private consultant advised a Stem cell transplant, but the NHS consultant ‘could not assist you further’ - and I took that to mean he thought nothing further could be done! I thought you were expressing confusion over the two very different medical opinions given. I’m very relieved that is not the case, and that you’re getting your Stem cell transplant! Wishing you the best of luck with it.
It’s great to be able to drive again, isn’t it? It gives you that bit of freedom in quite restricted times. I remember looking out of my hospital window and seeing a woman hop into her car and drive off, and my goodness, how I wished I was her. And after that, I longed for that freedom. I’ll never take it for granted again.
Anyway, good luck and I hope you remain feeling well for as long as possible.
Hi @Bees Welcome to the forum - i have found having access helpful but I’m not in everyday and I try to avoid the specifics as we will all respond differently to a diagnosis of cancer and treatment
I have the same advice re stem cell and had my diagnosis in March 2021. I trust my consultant and lead nurses . It’s a personal choice and it is a intensive medical regime, but they would not offer you if there wasn’t a reasonable chance of success, They don’t do for people over 65 only if you are fit and strong enough .
I will be using my own stems which they have already collected. I am awaiting a date to go in for the treatment which will involve high dose chemo and my good cells putting back after they kill off the bad ones .
In the interim I am I’m maintenance chemo (my terminólogy) . Please free to ask me any questions . Kind regards
I have uploaded a few pictures of the Hickman line I had in for the collection . I will have a pic line to put them back in. I think provisional date is November sometime. I caught Covid in August so had a set back .
Oh @Mayo57 thanks for your experiences and the photos.
It must have been so, so difficult having your treatment date put back, but we are here to support you, the waiting is the worst.
Please keep posting when you feel the need
Hi @petergreenfield, @Mayo57 and anyone else preparing to have a stem cell transplant soon. I just thought I’d pass on a tip that made a big difference to me during my second transplant: sucking ice-pop lollies during the chemo (Melphalan) infusion. I read anecdotal evidence that ice helps guard against Mucositis. I don’t think there is any scientific evidence but I thought it was worth a try. Well for me it didn’t prevent Mucositis completely but it was oh so much milder than the severe problem I had in my first transplant. This made it easier to swallow and keep up the all-important protein intake that aids recovery. I hope the whole procedure goes really well for you both.
Stem Cell Transplants can be very scary but the majority of them are straight forward with maybe the odd bump in the road. It’s a road well travelled though and very little normally goes wrong. The benefits of having it far outweight not doing so, I speak from experience. Hope you find the answer that’s right for you.
I thought I would share my story as there might be something to help someone.
I was diagnosed with acute lymphoblastic leukaemia with the philadelphia chromazone in April this year, completely out of the blue. It was, and still is, all surreal as we were still reeling from losing our son to suicide last November.
I was started on the UKALL14 protocol and would need 3 blocks of chemo and advised I would need a stem cell transplant. I remember the day my consultant sat with my husband and I and set out the risks. I left the room feeling pretty down and quite scared about the future. My consultant explained that having the philadelphia chromazone gave me a greater risk of the leukaemia relapsing and that it would most likely be more difficult to get me back into remission. I decided pretty quickly that I didn’t want to take the risks of a relapse. He told me that they are looking to cure me.
I started the first block of chemo with the NHS and went into remission. We decided to go private for the rest of my chemo as we discovered that my private consultant is in fact also my NHS consultant who is treating me now at Addenbrookes. He told me that I would receive exactly the same protocol privately as I would NHS. The benefits of going private to us were that my husband could be with me during treatment, nicer room, food etc. The fact that I could have company during such a difficult time helped us so much emotionally and made up our minds.
I was lucky I think as I didn’t suffer too many problems with the chemo and was only admitted with a temp once. I dont underestimate the impact and comfort of having my husband with me.
I am now back with the NHS at Addenbrookes having conditioning chemo and will have my new cells on Wednesday. I was lucky that the team managed to find me a 10/10 unrelated donor.
We did have a few mix ups with billing where we got billed for some NHS appointments but it was fairly easily sorted. My husband kept a log of where I was having treatment throughout.
One thing I will add is that since being here at Addenbrookes since Monday night, I have felt quite isolated and lonely. I am allowed 2 named visitors (who have to stay the same 2 people) for 1 hour each day. We decided it would be safer for my husband to visit only and I assumed that we could have the 2 hrs that were allowed for 2 visitors (hope I am making sense!). No, we were told only 1 hour. I know they are trying to keep us safe but it is hard being alone for so long, with all the emotions of what is happening and its only early days for me.
Oh my gosh, I’m heartbroken to read all you’ve been through. Life seems to throw so much horror at some. You’re being amazingly brave.
I had a Stem cell transplant for Acute Myeloid Leukaemia in January. If you have any questions, just ask. I feel really amazing now - I hope that possibility for you, helps you through this.
Wishing you the very, very best as you have you Stem cell transplant. I’ll be thinking of you. You can do this.
Thank you Coastgirl for your advice. Can you or anyone else advise timing of Stem cell transplant from first consultation to when stem cells are ready to harvest. Can it be weeks of months ??
Hi @petergreenfield, from my experience you normally have 6 to 8 rounds of chemo to reduce the cancer as much as possible, this took 8 months. Then comes some strong conditioning chemo which is a day in hospital and some sickness the day after. About 3/4 weeks after that the stem cells are harvested. I then had my stem cell transplant a month later.
Experiences do differ and sometimes people have to have extra courses of chemo whilst waiting for a transplant if there levels of para proteins start to rise again so your medical team will be best placed to give you a personal schedule. Hope this helps x
Hi @Summertime, don’t be lonely we are all thinking of you. I was quite lucky that the evening staff weren’t so strict on the timings. Virtual hugs and keep positive xx
Thanks @Lyn99 the time is actually going quite quickly.
I had my cells yesterday and had a bit of a reaction during and afterwards (hot/cold chills/shaking/banging head).
Feeling much better today
So I guess now it’s just a waiting game for the cells to graft xx
Hi @Summertime good that you’re feeling better today. Your transplant is different to mine but I do remember @ChrisCKW reports of what was going on for her. Time does go quite quickly, so many visits from staff it becomes a bit of a social whirl. Seems to slow down a bit towards the end but that’s when you’re feeling better and itching to get home.
Ps Found a really good 0.5% wine from Asda, only £3.00 a bottle, Asda Extra Special Sauvignon Blanc. Sparkling and tastes of wine! Really good alternative. Xx
Hi @Summertime , not anaemic now and feel so much better but neutraphiles are still dipping so have just picked up some more injections to boost them back up. Still having bloods taken weekly due to the neutrophil issue but just ringing for results now and seeing the consultant monthly so not bad at all. Just heard that I can have covid vaccine 100 days after the stem cell transplant so that’s better than the original 5/6 months originally discussed, should be beginning of November for me, not sure if that 100 days will be the same for you too? Xx
Hi @petergreenfield it depends on your diagnosis and treatment plan, so we’d really encourage you to speak to your transplant team about this. Are you having an autologous transplant? If so, Anthony Nolan’s webpage here gives a general idea of structure of the process - What is an autologous stem cell transplant? | Anthony Nolan
Hope you’re doing ok - we’re only at the end of the phone or email if you want to talk things through at any point.
xx
