My father has just been diagnosed with second stage MDS-RAEB trans...

[Irini187]

Hello all.



My name is Irini, I am from Greece and I am new here. My father, 72 years old has a history of IgA Nephropathy and Rheumatoid Arthritis. He was treated with Infliximab (Remicade), Methotrexate, Corticosteroids and Adalimumab. Trust me, it's hard for me to even spell these drugs however I just feel I should present a whole picture of his health status. Although it was difficult for him to cope with all that medicine he was doing fine. He was used to the side effects of each medicine, he was working out as much as he could and in general he would not let life pass him by. 5-6 months ago he complained that walking had become harder for him compared to the past (1 year ago) when he would walk 3-4 klms per day without any problem. At the same time I noticed that he had become quite pale. However he would not give up, he felt quite already and went on with his everyday activities. 2 months ago, he noticed that he could not walk for more than 0.5 klms before he was out of breath so he decided to check things out with a pneumonologist and a doctor that specializes in heart conditions. T cut the long story short, the second doctor noticed that his blood exams for the past year had shown a decrease of his HCT from 41% to 36% so he suggested that my dad did a blood exam to check fis latest HCT levels. The exams came out and his HCT was 17.4%. We were all in shoch and decided to take him to the hospital for blood transfusions. Once he had been admitted to the hospital he started going through numerous exams one of them involved bone marrow aspirate and biopsy. This exam showed Trilinage dysplasia with blasts 12%, increased erythroblasts. Flowcytometry showed erythroblasts >50%, blast cells 12.2%. His overall picture was suggestive of secondary RAEB-trans. On the 5th of March he was administered Vidaza 75mg/m2 (150mg) for 7 days. His Nephropathy prevented the doctors from admiting a bigger dossage of the particular medicine. On the overall, my dad tolerated quite well the therapy with no complications. Before exiting the hospital his CBC showed: Hb 8.4, HCT 24.9, WBC 2390 (PMNLs 45%, Lymphocytes 48%, no blasts), PLT 55000.

This morning, 2 days after he was relesed from hospital the doctor ordered a new CBC which showed HCT 26.5, Hb 8.7, RBC 2.990.000, WBC 2.300, PLT 53.000, Lypmhocytes 69%, PMNLs 25% and the doctor ordered to do a 2-days tretment with Granulokine injections and do a new CBC on Thursday. On April 2 he is scheduled to go into the hospital for the second round of Vidaza treatment.

He is not aware of how serious his condition is. At least not the whole picture. By all means he is no fool and he understands that we're keeping something a secret from him. However I think that the doctor is the most appropriate person to give him the information she (the doctor) thinks he (my dad) can handle at any given point, based on his blood results as well. I asked her about the possibility of a bone marrow transplant of stem cells but she told me that his age and his overal health condition do not suggest that he could go through such heavy treatment. She also mentioned that patients with such disease usualy dont make it for more than 2 years...and that is a positive scenario. Most likely, MDS will develop into AML and then I really don't know what is going to follow and for how long. I am still shocked, however I deny myself to lose my temper or my sense of humour. I know that things are bad and will most likely get worse, but I try to take one step at a time. If only I could see the future I would only wish that my dad suffers the least possible and by the time it is his time to go I just hope that he has made the best out of his life.

Thank you so much for taking the time to reading this. In case anyone of you has some information, suggestions or thoughts that he/she would like to share, please do so!

All the best

[Dick S]

I'm 77 so I know what he's going through with not being able to get a BMT or SCT because of our age. Tell dad to hang in there. Just have him go more slowly with his daily activities, I know it's hard to slow down after all these years. This disease can sometimes move very slowly. I've been watching my numbers ever so slowly go down for 6 years and I'm still around. I promised my wife I'm going to hang in there for 8 more years and after that, who knows, maybe 8 more. Stay positive.

[wilmasdaughter]

Irini,
My mother is 89 and was diagnosed just less than a year ago with MDS, low platelets, WBC and RBC. At first I was horrified with the prognosis (and what I read about it), but over the past year, I have come to peace with it.

My mother has her good weeks/days and bad weeks/days. When she gets sick (cold, flu, diarrhea, etc.), she has to be seen immediately because it has always progressed to something worse. She's been hospitalized 4 times in the past year for various illnesses, all tied back to the MDS. I see her health failing as well as her spirits. However, her hematologist encourages her to continue doing the things she likes to do -- garden, plant flowers, sit outside, go out with her girlfriends -- because really, what is life if you can't enjoy it?! At first I was overly cautious about her going places, etc., but now I realize that she has to live what life she has left in her own way.

So I guess what I'm trying to say is -- take the "2 years" with a grain of salt. In some ways, people with MDS have that window of opportunity to "live life to the fullest" because they know their time may be limited! I will tell you that I didn't feel this way a year ago -- and there are still times when I am devastated to think that my mother won't be around forever.

A couple of things that have helped us:

1. Anytime he's hospitalized, always ask to have him on the oncology floor if possible. I have found through trial and experience that the staff on the other floors (medical, surgical, gerontology, etc.) don't always have the knowledge of MDS (honestly, I have had to explain it to some of the nurses when my mom has been in the hospital before!). You will find that the oncology nursing staff have knowledge of MDS and therefore I really think his care will be better.

2. Treat any small ailment with urgency. If he has a cold, flu, diarrhea, stomach pains, headache, fever, bleeding, etc. -- even if it seems minor -- you have to get him to the hematologist as soon as possible. At least call them and ask advice. I know my mother's hematologist probably gets tired of me calling all the time, but three of her four hospitalizations this past year have occurred because I kept pestering them to see her! Bleeding and fevers are especially serious.

3. Take care of yourself. As primary caretaker (I'm assuming you are), it's important you stay healthy and SANE. In the first 8-10 months of my mother's illness, I was a frazzled mess. But I have since realized that I need to take some time for ME, otherwise I'm of no use to her.

Take care and keep in touch.

[Irini187]

Hello to both of you, Wilmasdaughter and Dick S.

Thank you so much for taking the time to read my post and respond.

Talking to people that are either in my dad's shoes or mine makes us a "unique" and "weird" team, don't u think?

I am sorry for the dealy but I haven't seen your replies. I assumed that I would somehow get notified when a new post would be published -via email- but I guess this is not the way this forum works. That's ok, I should check in more frequently on my own!

Our latest news have been posted here http://community.lls.org/message/136380#136380 so you could follow the link for an update.

You are absolutely right Wilmasdaughter when you say that I should keep myself together alongside with my father. Although he has been remarried and his wife really takes good care of him, I am his caretaker too in many ways. We work together so I act as the "pillow" and take the punches so that he will only get the good news (i.e. yes, we got paid, yes business is doing fine...etc) but I don't mind. I am young and patient, he is older and less patient. Even a month ago, when MDS was not part of life, these were or roles of the game!
And yes DanS, it is a fact that every patient is a different case study (yours is a really optimistic one I f I may say so and I am so happy to read about your promise to your wife!) and at the end of the day statistics are there not only to be verified but also to be proved wrong.
For today, all I can be happy about is the fact that even after medication his blood tests came back much better...HCT is 27.4, Hb 9.0, RBC 3.140.000, WBC 13.800 (actually that is the reason why he got Granulokine, to increase his WBC) and PLT 68.000. Tomorrow is a new day and we will have to take one step at a time, won't we?
Thank you both so much!

Warmest regards
Irini

[Irini187]

DickS not Dan S....sorry for mispelling...twice!

[Neil Cuadra]

Originally Posted by Irini187

I am sorry for the dealy but I haven't seen your replies. I assumed that I would somehow get notified when a new post would be published -via email- but I guess this is not the way this forum works. That's ok, I should check in more frequently on my own!

You have your choice about email notifications.

To turn on email notices for all future posts that you make, click My Settings above, then click Edit Options on the left, set Default Thread Subscription Mode to Instant email notification, and click the Save Changes button.

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[Irini187]

Thank you so much Neil! And I found it quite odd that I had not been notified! Fixed it now!

[ziad adore my father]

Hi Irini....
Hope you are doing well...

I think we have a similar case, my Dad(82 years old) had Neuropathy disease or what we
call it CIDP (Chronic inflammatory polyneuropathy) since 1992...

6 months ago dad became more and more weak...pale, breathless...walking became hard...his
doctor ask him for CBC test and the results showed very LOW Blood count...

we admit him to the university Hospital in beirut-Libanon, and there they do for him bone
marrow biopsy and bone aspirate...and finally they told us the bad news that he had
RAEB2...and he need transfusion once a week due to the support of the EPREX injection and
Neupogen.

Few months later, dad became blood transfusion dependent (weekly) and even platelets.

the catastrophe is when his old disease (Neuropathy) became worse, and he lost 90% of his muscles.

last time our Neurologist suggested to give dad a double dose of "IVIG" hoping to recover what he lost.

Unfortunately MDS has been transformed to AML and we started with the VIDAZA and he just finished the third cycle, he had no side effect unless he is getting weaker and weaker, to a point that he can not stand up just to urinate.

Blast cell are appearing in the peripheral blood too, they become less when we take vidaza.

i am praying all day night for dad, to become better and to respond to the new treatment and become transfusion independent...

Now every 1 week dad need blood and platelets transfusion, iron in blood became so high...his immunity is so low ANC=108 (Normal=1500-5000)

I wish for your father to get better Irini
i know its hard but we have to stay next to him and give him the maximum support and love.

Best regard

Ziad Mohsen

[Irini187]

My dear Ziad

Thank you so much for your post. I really appreciate the time you took to read our story and respond.
I really hope that you father will get better in due time and respond to the therapy and stand up on his own two feet. I mean, we can hope right?

I am looking at my father right now, he looks alright (just a bit pale and weak but on the overall he looks ok) and I find it so difficult to believe the weird stuff that have been going on inside his system.

It's a good thing that so far your father has not had any side effects from Vidaza. I hope that my father will accept it too without any negative impact and that round 2 of chemo that will start on April 2 will go as smooth as possible.
I need to keep on believing...I don't know to what. I just need to keep my hopes up and my faith alive.
I will pray for you Ziad, you and your family!

Don't lose faith!
Hugs,
Irini