Another new to site!!!

[Fiona.Bath]

Hi,
Firstly thanks for your time - our similar forum in Aust is much smaller than this and thought it was worth spreading 'my net'.
My name is Fiona and I live in Bundaberg Queensland.
My dad (in-law) has MDS - RCMD - with his Red Blood cells and Platelets being the 2 lines that are the problem.
His Karotype was quite bad - 90% analysed had an isochromosme composed of the p-arm of chromosme 5. - so does that mean that it's the same as 5q- because the q arm of chromosome 5 is not there, as it is replaced with the duplicate p-arm - GOD I wish I had a medical degree.......
His IPSS score is 1.5 which puts him in Intermediate 2.
His MDS is from long term cyclophosphamide use (for follicular bronchiectasis) - which he has since ceased taken (which has opened up a whole other kettle of fish......).
He is 58 - is diabetic (another side affect from one of the other medications he has to take.....), and not the best health/shape. But the hematologist has pointed us in the direction of a bone marrow transplant - I feel that this is a bit of a keeping positive strategy as from all that I can read about the transplants that the 'ideal' is to be under 50 and in otherwise good health..... and that's so not Bob......

I / We are finding it so hard to deal with the uncertainty of his prognosis, I get frustrated with the whole median life expectancy thing - I know I have to stop thinking about 'how much time' I am a little focused on it at the moment (we have 2 small boys and I just want them to spend every waking second with him).

I have called the Peter Mac Centre (a centre for excellence in Aust) and am waiting for a call back in some hope that maybe they may have some other alternatives even just a 2nd opinion.
Sorry for my prattling on - but I am really at a loss as to what to do - when he was first diagnosed it was a little easier as I just buried myself in the search for information about MDS, reading Blood reports etc. But now I don't know what to do - hence why I am here.
Any thoughts suggestions would be greatly appreciated, I want to be the miss fix it (that's me I ALWAYS - fix everything) and it kills me that I can't fix this, I can't make him better, I can't even help him stop being so sick. Oh and at the moment he is very nauseous all the time.
We have packed him off to Indy with his eldest son for some bonding time so that will be great for them both - but I am also worried about the toll it will take on him next week.

I was also wondering should we be looking out for anything else health wise - such as getting him to stop working himself into the ground........activites that may 'make him worse'.

Once again thanks for your time in advance.

À bientôt mon amie

Fiona

[Ruth Cuadra]

Hi, Fiona.

Welcome to Marrowforums. I hope you can get a good explanation of the isochromosome 5p vs. 5q- situation from someone with more medical knowledge than I have, but I will share with you what I know:

Deletion of the long arm of chromosome (known as 5q-) or loss of a whole chromosome 5 (monosomy 5) are both abnormalities associated with MDS.

Isochromosome 5p, abbreviated as "i(5p)", which is not the same as 5q-, is a rare abnormality associated with AML (acute myloid leukemia) that arises from MDS. In an isochromosome, as you correctly noted, the missing arm is replaced by a duplicate of the remaining arm. So in i(5p) the q arm is missing but two p arms are present.

It is certainly reasonable that someone might be eligible for a bone marrow transplant at age 58. Transplants are done regularly for patients up to at least 70 years old, and possibly beyond in some centers. The availability of a matched donor is usually the key. Do you know if your FIL has one?

A second opinion is always a good idea. MDS is a difficult disease to diagnosis and no two patients have the same symptoms and responses to medication. There are treatment options other than transplant. Until you know more, I would take all of those dire predictions about life expectancy with a large grain of salt. No one person is exactly those statistics and, as you will learn at Marrowforums, people can live quite well and comfortably for many years with only minimal care.

Feel free to share your questions as they come up. There are a lot of knowledgeable people here who stand ready to help.

Regards,
Ruth Cuadra