Hi, I was diagnosed in April with acute lymphoblastic leukhemia. I am midway through chemo blocks and have been recommended to have a transplant. Addenbrookes are currently looking for a donor and it is hoped we can go ahead with bmt Sept time.
I just wondered if anyone here has had their transplant at Addenbrookes? Any info would be great. Thanks
Summertime
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Hi @Summertime, sorry I cannot help with your question, but I was wondering how you are feeling and thinking about potentially having a bone marrow transplant about Sept time.
As you say that you were only diagnosed in April and I think I would have still been in complete shock at this point in time.
We will be here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
I hope someone will be able to share their experiences here and even if they did not have their bmt at Addenbrookes that might not matter.
Take care and stay safe.
Please keep posting and I look forward to hearing more from you.
Hi @Summertime. It all sounds as though it is moving along in the right direction. I don’t have any experience of this but hopefully someone on the forum will be able to offer more.
How are you feeling about it all? I can imagine there are a range of feelings and emotions! X
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It is all still quite surreal but I think I’m coping quite well thanks. I am trying to take it a day/week at a time.
I just thought it would be helpful to talk to someone who has been through this recently.
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Yes - it does help to speak to somebody who has been through it. Sounds like you have the right approach. Take care and keep us updated x
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Hi @Summertime, I agree it does help to hear from someone that is going through or has gone through a similar situation, is there anyone out there that can help please?
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I was diagnosed with CMML2 mid December 2020. I’m scheduled for a transplant end of July /beginning of August at Addenbrookes. It takes longer to process than I expected. I have a donor (my brother) and both he and I have had our physical checks. But I’ve still got to have another bone marrow aspiration (4th) to check status of disease. I start 4th and final cycle of Azacitidine (the chemo drug I need to destroy blasts before the SCT).
I can answer any questions on my experience so far; and can keep you posted.
My next appointments there are 1/7 consultant then bone marrow aspiration
And 27/7 insertion of central line (Hinkman line) which is the last step prior to admission.
Sending hugs for your journey and if I can help by answering from my personal experience I will.
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Hi @ChrisCKW. I’m so glad that @Summertime has found somebody to share experiences with. I’m sure this will be invaluable! I hope you are doing ok?
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Hi ChrisCKW, what a coincidence! I would love to be able to follow your journey. I think our treatments are a bit different as different diseases. Are you under Dr Crawley?
I don’t have siblings so they are looking for a suitable donor match for me.
We might even be there at the same time as they have said mid Aug/Sept for transplant.
How do you feel about it all?
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Yes @Summertime Dr Crawley is the Bone Marrow Transplant head honcho.
Addenbrookes is one of the centres of excellence for bone marrow transplants and the treatment of Blood cancer.
They have access to both Uk and world wide donor lists. I had 2 back ups from the uk list, one is still on notice I think.
For my disease which is exceptionally rare they wanted me to have 4 cycles of chemo to try to pre prep me by killing a fair number of the cancer blasts. When I go in I will have the Reduced Intensity Conditioning regime, all chemo no radiation.
I’ve been for lung function tests (which made me giggle), radioactive tracing to test first kidneys, then heart. They took about 8 hours. I’ve had chest X-rays, echo cardio and ecg
The only uncomfortable part for me is the bone marrow aspiration and biopsy.
Ask if there is anything you would like to know - I think the procedure for SCT itself is the same no matter what disease. Xxx
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I’m ok thank you @Nichola75 - have the next 7 doses of chemo to get under my belt, then fingers crossed I’m on course for end of July/early august. BMX /SCT is a strange summer holiday plan! X
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Thanks ChrisCKW, it sounds like I am about a month behind you. I have appts for lung function and radio test. I agree the bone marrow biopsy is not very nice. Today I am having a lumber puncture at Addenbrookes, where they inject chemo into my spine. Had it twice before and not very nice either! Oh well, will all be worth it hopefully!
I am on last block of 2nd 4 wk block of chemo, not feeling too bad. My platelets have all but disappeared so having top ups regularly. Next block I have to stay in hosp for 3/4 night as they give me Mehtatroxate (can’t spell it) and also need to be on iv fluids as it’s very toxic.
I am both excited and dreading the transplant. Worst thing I think will be being away from family and home. I’ve been told we can have 1 names visitor. I will be very interested hear how you get on.
xxx
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Yes - you will have to plan for next summer instead! You take care of yourself and keep us updated X
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Hi Summertime.
Well done for posting on the friendliest forum in the world !
I went through the same journey a couple of years back - AML, lots of lovely chemo then a Stem Cell Transplant.
I did it in Newcastle not Addenbrooks, but I’m sure you’ll get similar brilliant treatment from the healthcare heroes!
Just wanted to wish you strength and courage for the journey.
And it is a journey!
The good news is that I have come out of the other side of it all 100% fit and healthy and bursting with energy and health.
And so will you!
Be patient and be kind to everyone along your amazing journey!!
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Hi @Quentin I am so glad that you are doing so well now, your energy burst from your post.
I think you are so right that the standard of care in most hospitals is so caring and first class. It also gives us the opportunity to build a brilliant relationship with all the staff too.
We are so lucky aren’t we.
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Such a lovely story to read!
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@Quentin That gives me a lot of hope and support too! I’m so close now - it’s a bit daunting; so your chirpy post is really encouraging. Thank you! Xxx
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Hi Summertime, I have myeloma, so a different blood cancer, but am treated at Addenbrookes by Dr Crawley and had my SCT there in 2019. I, like most myeloma patients, had an autologous SCT (so no GVHD) rather than allogenic donor transplant, however both are done on one of the two same wards. I found the whole experience rather less traumatic than I expected, most of the staff were absolutely lovely and supportive. The room I had was a good size and peaceful. Staff were good at explaining the process as it went along. I remained able to eat throughout, but found hospital food unappetising & not particularly healthy (disappointing since we need neutropenic diet). Rather than small quantities of appealing food, the hospital kitchen supplied large ‘school dinner’ type meals, so I had quite a bit of food brought in or asked for food from the kitchen when I felt like eating (once I realised this was available- I wasn’t told about this until a week in). I took in quite a few ‘things to do’ but did very little that needed concentration, most things remained in my case.
After care was good. Actually I was readmitted at my first check up thanks to staff vigilance (I had no idea that this would happen) & spent a further 5 days in Addenbrookes.
I am likely to have another SCT at Addenbrookes in the future and will not have the same level of trepidation next time.
Most people in my local support group have had SCTs at Addenbrookes and I have heard nothing but positive views of their experiences, whether those patients have had straightforward recovery or some hurdles to overcome. Best wishes for yours.
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