stem cell transplant

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

I am Mike Thehighlander and I have been through to Allo Stem Cell Transplants with cells from my brother fir a rare type of NHL.

I see that you posted a question to Caroline our Heamatology Expert we also have Jane who works in Stem Cell Transplants in our ‘Ask an Expert’. section. Have your team given you exact teasiobs that you are not ready for SCT?

Your Heamatology department would need to refer you into a Stem Cell Transplant Unit

I help out in our dedicated and  very supportive Stem cell transplants for blood cancers group.

This is a good place where you will open up your concerns and questions to a wider audience who know exactly what you are going through at the moment.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

I will keep an eye open for you.

Hi Mike, tnx for your response. I am being treated with Ibrutinib, and because it seems to be working, they say I should not have stem cell transplant as there's big risk. Ibrutinib might be working, but sides are very bad in my case, overall wbc has dropped down slightly but  i am far from being comfortable. I am being treated in Spain currently for personal reasons,  but I am also patient of nhs. I am simply thinking stem cell transplant is way forward for me, and ibrutinib is not. I am not allowed to travel, but i am thinking coming back to Uk would give me more chances for stem cell transplant. Just don't really know where to start....

Hi again , I will always say that if something is working - good (even for a short time) then there are other tools in the box for further down the line......like Stem Cell Transplant.

Stem Cell Transplant is not to be entered lightly as it is very demanding both physically and mentally but for me it has work - yes, it was a long slog and I am left with some other medical issues because of the treatment but I can not complain and if you have looked at my profile, you will see I should not be around now.

Can not comment about where best to go forward with more treatment - never been to Spain...... but the treatment I received in The Beatson in Glasgow was top notch......and there are many other UK centres are at the top of their game with regards to SCT.

I think that you would have to be referred to a SCT Unit through your local (UK) hospital Heamatology Unit.

All ways around to talk.

Hi Mike, I've read your profile.... oh man...

I actually  did not know how hard sct is, till I read your profile. I am thinking how could i possibly start treatment in uk without going through everything (tests, waiting, multiple visits in hospital) again. I'd like to send all documents by email or post, simply to avoid travelling before anything starts, then if treatment in Uk would be similar or the same as is here, I'd make my decission. I am scared of the infection, specially now in a winter time. I can't live like that for much longer, I feel so bad, and it doesn't look like it going to be any better as ibrutnib is for life. I  should never stop it.  But this isn' life, its vegetation.

Hi again Me .

We all go on our unwanted journeys that have various bumps but we need to do what we need to do.

There are varying degrees as to how hard a SCT can be, some folks sail through, but other have a hard hard time.

There are two types of SCT, the first is an Autologous (Auto) SCT and this involves getting the patient into a condition that no cancer is evident this is normally done by using very strong chemo then the patients Stem Cells will be harvested then after the immune system is taken down with even more very strong chemo the cells are given back and the all new immune system starts to grow.

I had two Allogenic (Allo) Stem Cell Transplants with cells from my brother as my team could not get me in remission to harvest my cells - these Stem Cells are basically used to reboot the immune system and in doing this looking to over write the cancer cells in the blood and Bone Marrow. 

SCT is a major procedure......rather like going through major surgery with out the blood ;)

There are a lot of tests and meetings with the SCT Team before you even get accepted to go through the process.

Pre SCT tests
Before you can be presented for a Stem Cell Transplant you will need to go through a series of tests and examinations to ensure you are healthy enough for the procedure to be carried out.

If your team think you are not fit to do the process you will not be able to proceed.

A Stem Cell Transplant tend to be more successful in people who are in good general health, despite their underlying condition and age.

The tests and examinations you will have are:

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 Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.

Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working and to have data to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.

You will have a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for.

You will also meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.

.......so a lot to go through before getting into the ward

Thank you so much Mike, your info is really preciated. I am so in the dark here, you have no idea. 

Thank you again, I need to rethink my position  now.