Mum, 64yo just been diagnosed with RAEB 2

[Eva's daughter]

Hi All,

Mum has just been diagnosed with RAEB type 2. Needless to say that I am utterly beside myself as she is not only the best mum in the world, she is also my best friend and best buddy and Nanna to my 1 yo son. From all of the things that I have read, I know that she doesn't necessarily have long. She starts Azacitidine next week. Her platelets are very low.

I have so many questions.... I'm not ready and for that matter, nor is she ready to go yet.

Here in Australia, they don't offer stem cell transplants for older people. I know stem cell transplants are very risky but do they do them in other countries for RAEB 2? Is it even an option with RAEB 2?

My Mum has been super fit and healthy all of her life but now she is bruising easily, getting short of breath and very tired all of the time. Its hard to watch her decline so rapidly.

Is there anything I can do to ease the situation? She has always thought of herself as indestructible and this is really getting her down.

Any advice would be greatly appreciated.

Best,

Emma (Eva's daughter)

[bailie]

We are very sorry. I can empathize with your immediate reactions, it is difficult. Vidaza (azacitidine) saved/extended my life. The hope is that she tolerates it well. I had very few problems with the injections in my stomach. I took anti-nausea pills each day with the shots. Not sure if they were necessary, mostly as a precaution. The very important consideration is that the anti-nausea pills will cause constipation which can be very serious. Be sure to take something like Miralax while getting the shots. If you have any questions be sure to ask here on the forum. There are many who have been/are going through the very similar situation. We wish the best for your Mum.

[Eva's daughter]

Hi Bailie,

Thanks for your reply. My Mum has lived with A G6PD Deficiency (favism) all of her life which means that she can't tolerate certain medications without needing transfusions... I hope these injections work for her!

I'll forward info to her about the anti nausea drug and tell her about the constipation... thanks for the tip! Thinking about diet as well... Did you follow a strict diet?

Did you have a stem cell transplant? Is that the same as a bone marrow transplant?

Thanks again

[bailie]

I did not change my diet. I'm sure that a good diet would be beneficial. My diet that I have always had for about 15 years is a very big bowl of oatmeal every morning for breakfast and nothing spicy the rest of the day. No tobacco, alcohol or coffee. Just don't like any of it. I did have a stem cell transplant (SCT) which is very similar to a bone marrow transplant. Generally a stem cell transplant is used for RAEB-2 and is easier for the donor.

[Eva's daughter]

Such a great help!

Sorry for all of the questions... but SCT isn't available in Australia for older people. How old were you when you had yours and what country do you live in? Mums originally from Cyprus but does have a British passport... I suppose I could look into SCT for those countries.

Mums blasts are at 11% at the moment..

[Hopeful]

Hmmm... I thought I posted a reply but maybe I forgot to submit it. Sorry if this is a duplicate.

MDS RAEB 2 is considered high risk MDS, so these are the typical people for which a transplant is recommended. In the US, 64 is not considered too old for a transplant, especially if the person is healthy with no other comorbities.

I hope the Azacitidine will put your mom in remission so that you have time to seek out options.

Best to you and your mom -

[bailie]

I was 68 when I had my SCT. I have a friend who last year had a SCT at age 74. I live in the U.S.

[rar]

MDS RA EB 2 transplant at 73 - 2.5 years ago, related donor age 68. Age never mentioned. MDS cured but traded it for GVHD which is now mild to moderate. I am glad I had transplant. I reside in USA.

Ray

[Eva's daughter]

Thanks everyone, you have all been exceptionally helpful.

Definitely provided me with food for thought.

Mum has one sister left in UK. Does anyone know what the procedure might be in checking the match and using her stem cells? Will Mum have to go to UK (from Australia) or will she have to come here or is it possible to do the check and possible transplant over the seas if it were to come about?

Best wishes to all,

Emma

[bailie]

I received my stem cells from a donor (a 20 yr. old male) from Germany who I have never met. Generally, the younger the donor the better. The donor does not have to be related and sometimes it is preferable that they aren't.

[Cheryl C]

Hi Emma - It's always sad to hear of another MDS diagnosis. Please don't despair yet.

I live in NSW and was initially diagnosed with RAEB2, but my blast count dropped without treatment and I was reclassified as RCMD which is where I've stayed for four and a half years now. I was headed for a bone marrow transplant at age 64. The haematologist at Royal North Shore Hospital (Sydney) told me they would do transplants up to the age of 70. I'm not sure what the situation is with stem cell transplants. How old is your mum?

[Eva's daughter]

Hi Cheryl,

Everyone I have met so far with this condition is in the US! Glad to meet a fellow Aussie. My Mum is turning 65 next month. We meet with the specialist again when her genetics have come back (we are hoping for the better gene needless to say)

So glad that you have remained stable for 4 and a half years... thats really incredible. May I ask if you did anything differently since you were first diagnosed? diet, exercise etc..

[Cheryl C]

Hi Emma - Yes, there are very few Aussies on the forum at present. Welcome I'll be watching for your posts.

At 65 your mum isn't too old for a transplant yet, if she doesn't have any co-morbidities which would mitigate against it. Sounds as though she's always been very healthy, which was the case for me too. I have never smoked or drunk alcohol and was brought up eating lots of fruit and vegies and pretty much dairy free. I follow a low-sugar diet too because low white cells/neutrophils/lymphocytes are my main problem. Even though I don't feel like it sometimes, I try to go for a walk in the fresh air every day. The main different thing I did was retire and take a long holiday about 6 months after diagnosis. I had a high-pressure job in the inner city (Sydney) when I was diagnosed.

Has your mum had her Vitamin D3 and B12 levels checked? I find that taking D3 definitely improves my platelet levels. Mine have been in normal range most of the time since I started supplementing.