Completely in the dark please help!

So my husband was diagnosed with Myelodysplastic syndrome (MDS) August last year, over the phone by a consultant who didn’t actually tell him he had cancer, she simply said “it’s not leukemia yet” I actually found out myself from the diagnosis letter by googling. Then I had to break the news to him myself! Was not happy!! So fast forward to today march 2023 his current diagnosis: Myelodysplastic syndrome (MDS) with borderline excess of blasts 5%
Dysplastic features in the myeloid series.
Awaiting further cell markers.
Liver cirrhosis with portal hypertension, oesophageal varices and hypertensive gastropathy.
Type 2 diabetes on Metformin.
NGS panel shows 5q-, 7q-, TP53 variant CN-LOH-17p with very poor cytogenetic risk group, pushing IPS’S up to 9 and IPS extreme immediate risk 2.

I know! So much to take in! I have no idea what all this means! The consultant we recently visited, told us that with my husband’s diagnosis, the only way to describe his prognosis would be that in 100 people, the 50th person would only live for 12 months!!! Wtf!
He has been told he needs a bone marrow transplant, but because he has NAFL disease he needs to have this checked to ensure his liver will stand the transplant. He’s also scheduled another bone marrow biopsy to check what’s going on there too. He’s been told, if his liver can take it, he can have the drug called Azacitidine which will help to control the Myelodysplastic syndrome (MDS). Not sure how because I’ve googled and it stated that it lowers the blood counts! His blood counts are consistently low, having to have a bloods transfusions every week to 2 weeks! He recently was admitted to hospital having RBC levels of 53 platelets at 14. Whilst in the hospital he received 6 units of blood 2 units of platelets and because his blood sugars were in excess of 29 was put on an insulin driver with massive doses! He now has to inject insulin 4 times per day. It’s really strange because he says he feels absolutely fine! So the prognosis just makes no sense to us! I’m really worried and scared right now, god knows how he feels! He keeps his worries away from me. We’re really hanging on the results to come. And remaining hopeful! If anyone could shed light on any of this please could you reach out! We are totally floored by all this! Still trying to understand what’s going on!

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Good Morning and welcome to the forum.
@Helsbells
Here is a link to some resources which might help.
What is myelodysplastic syndromes (MDS)? | Blood Cancer UK and also, the Experts panel discussion on effective communication with treatment teams it may help you unravel the information next time you speak with them- Ask the Experts: Effective Communication with your Treatment Team - YouTube (Ask the Experts: Effective Communication with your Treatment Team - YouTube)
The blood cancer uk team are only the end of the phone if you want to talk anything through with them even if it’s just to help you formulate questions for your husbands clinical team.

tel:08082080888

Take care,do stay in touch we are all here for you.

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Gosh - that’s so much to take in for both of you and it must be a bit of a whirlwind at the moment with no time to process anything.
@Jules gave great advice. The support line really is great and if you feel up to it, it may help cor you to talk things through.
Please keep us updated on how you both are. We are here whenever you need us x

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Wow what a whirlwind of information and language to take in, @Helsbells, no wonder that you are floored, worried and scared.
I was diagnosed 19 yrs ago and was also not told that I had a cancer and your medical language is far better than mine. I just find that the medical profession talk a foreign language to me.
We are all very special unique people with our own medical histories etc. so really only your husbands medical teams can answer any questions you both might have, perhaps now is an opportunity to write them all down for his next appointment.
The waiting for information, tests and results is never ending and the worst feelings
The main thing that perhaps you can both do is to really look after and be kind to yourselves, everyone deals with things in a different way.
Please do let us know how you get on.

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Gosh @Helsbells I’m so sorry to hear of what you and your husband are going through. If you want to give us a call to chat things through, please do feel free. The number is 0808 2080 888. How have you been feeling the last few days?
If you and your husband have questions or concerns about any decisions made about his treatment or anything else, don’t be afraid to get in touch with his clinical nurse or key worker, in between appointments, as it’s really important you feel informed and that you get the right advice for his individual circumstances. In case it’s helpful, Azacitidine kills abnormal cells in the bone marrow. Because the abnormal cells cannot divide and grow, they die and allow (in time) for normal blood cell production. Whilst it may feel counter productive, the aim is to improve the the bone marrow production of red blood cells, platelets and white blood cells. The weeks that the Azacitidine is not being given, the bone marrow has the time to regenerate. I do hope this makes sense, but if not please do give us a call to talk things through.

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How are you doing @Helsbells? X

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