Hi
My name is Allison & after months of testing I have been diagnosed with a rare form of 2 different blood cancers - MDS/MPN Overlap Syndrome. Will be assessed to see if I am fit enough for a bone marrow transplant. Hooe I am but think the process will be brutal. Any advice on going through a transplant would be appreciated. Thank you
Hi again Allison and well done navigating across to this little corner of the Community……
You know who I am and the basics of my history from your post in the New to the Community but this is a link to my story……
But very important to realise that I am now over 11 years out from my last treatment, in full metabolic remission from both my rare (8 in a million) hard to treat (still classed as incurable) Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma and also my second very rare (4 in a million) more aggressive fast growing High-Grade Peripheral T-Cell Non Hodgkin’s Lymphoma……. But I turn 71 in a few weeks and I am living a great life
It was actually my 11th re-birthday on the 21st of this month (October) as it was 11 years since my second Allogenic (Donor) Stem Cell Transplant (AlloSCT)
This group tends to mostly have ‘visitors’ as folks come to look for support, information around SCT……. but once they are through the SCT process they move with life and away from the group…… I have committed to stick around and help out.
In the UK the vast majority of SCTs (over 90%–95% of procedures) are done using Peripheral Blood Stem Cell Collection because it is simpler, yields more cells, and allows quicker blood recovery compared to harvesting directly from the Bone Marrow…… but a vast number of consultant still use the term Bone Marrow Transplant but are actually referring to Stem Cell Transplant.
You may already know that there are 2 types of SCT…..
An Autologous SCT (AutoSCT) requires getting the patient into a condition that no cancer is evident this is normally done by using chemo then the patients Stem Cells will be harvested (like giving blood)….., then a few days strong chemo to switch of the patients immune system……. basically the Bone Marrow is not producing blood cells like Neutrophils….. then the patients ‘clean’ Stem Cells are introduced back into the patient and their all new Bone Marrow/Immune system regenerates.
The other types of SCT is an Allogeneic/Allograft SCT (AlloSCT)…… used due to how a persons condition has developed or their team can’t get them in to a position to harvest their own ‘Clean’ Stem Cells with the process basically being the same as an AutoSCT but missing out the stem cell harvest as in an AlloSCT the cells comes from a matched donor.
ai had 2 AlloSCT the first in June 2014……. Unfortunately this one did not work but it was an accepted risk as my case was complicated due to being treated for 2 types of rare T-Cell NHL at the same time…….
But I went back in Oct 2015 and had my second AlloSCT and eventually full remission was achieved and 100% donor (my big brother) graft was achieved.
Will be assessed to see if I am fit enough for a bone marrow transplant.
Yes there are tests and examinations required:
*An electrocardiograph (ECG) to check your heart's rhythm and electrical activity
*An echocardiogram scan used to look at your heart and nearby blood vessels
*An X-Ray or CT to check the condition of your organs such as the lungs and liver
*A very detailed Lung Function test to check your lung function and lung capacity
*A dental examination including x-ray's to check for any hidden mouth problems as the SCT process can develop gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the SCT not an option.
*Various tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working.
*For an AlloSCT blood tests are used to have data to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.
*A very long ‘talk’ with a SCT consultant going through all the process including all the ups and downs that will come along.
* We meet our SCT coordinator and was given a walk round the SCT unit
Back in 2014 and 2015 we had a meeting with a Phycologist as the SCT process can be a hard phycological journey so they wanted to make sure we understand what we were letting ourselves in for. The Phycologist also come in once a week to see us when I was in the SCT unit.
We also were seen by a Financial Advisor as the SCT process may have a long effect on your ability to work and ensure we were getting all the benefits that were available to us.
Hooe I am but think the process will be brutal
…….. this is not necessarily the case. Yes there is some strong chemo for a few days before getting the Stem Cells and 10ish days where you have no immune system and the time where your all new immune system grows…… then the weeks of recovery plus day 6ish months being carful not to catch infections…… but all very do-able.
My only issue was during my second AlloSCT due to me developing a heart problem but that was dealt with very quickly.
My honest thoughts are….. I was diagnosed in 1999 age 43 when our daughters were 14 and 18…… the then median survival period for my first type of Lymphoma was set at 3-5 years….. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. and I am still living a great life.
My advice is take each step as it comes….. have a look at these links and do come back to us with any questions you have.
Self (autologous) stem cell transplants
Donor (allogeneic) stem cell transplants
Top tips for stem cell transplants
