My father's MDS

[andrzej g.]

Afternoon My Dear Ones,
This is my first post on this forum. I’m writing it though the tears and grief cannot be fought. I am a physician working at Polish Medical Emergency Care. My father is a surgeon who’s still working at his age of 66. He has always taken much care of the medical diagnostics and in such a way he had diagnosed himself with the very beginning forms of thyroid and prostatic cancers. In october he diagnosed a strange granulocytopenia and his counts was falling. Now I know he has MDS as the BMB says. There are 13,2% of blasts in his marrow and the marrow is very very hypocellular. It seems that the prognosis is dramatic. He has only 400 granulocytes, though ca 2000 of the leukocytes. He is still working, he takes care of the house and the old dog. We are waiting to see the cytogenetics and the trepanobiopsy but I know what I may expect. He might not live to see the summer. I am so scared and I feel like… One cannot express it with words.
Respect to all of you, My Dear Ones…
Andrzej

[Lexingtongrn]

I am so sorry. I understand..there are no words that can express that feeling. I will remember you and your father in my prayers.

[alexandra7]

Dear Andrezej,
Are u sure that what you expect is what will really happen. If your father is still standing up maybe you should not be so drastique . Keep into consideration that MDS is a very strange disese and it can take different turnings . I do not know as much as others on this forum but from the number of blasts he can be at a level of risk of 3 on a scale from 1 to 4 .At least this is how I see it. Of course it depends on other factors as well. I Think I read on the net about people who had 24% blasts and if I read about them it must mean they were still alive. And even if the situation was not a good one you shouldn’t leave your head down . Think that your father is a strong person to cope with it all and still work and take care of the house and the old dog . You should be this way too: optimistic and helping him to go through this . You said “He might not live to see the summer” . Well if this will be the real situation then you should not be scared but enjoy the time you have with him as much as you can . It’s cruel but you have to face it. I hope things will go well .Keep us posted . You will be in my prayers Alexa

[eve]

dear andrezej

are any kind of chemo treatments an option for you father?

he should not go down without a fight – 66 by today’s standards is still young

wishing him good health

good luck

eve

[sarah]

Andrzej,
Dec 2001 my husband was told by his Dr he had 6 months to live without a bone marrow transplant. After 3 years he has not yet found a suitable donor, and is very much alive. This disease is so different for everyone. No two are alike. What is your Dads classification of MDS? Remember to think positive, and take it one day at a time.
Sarah

[Terri]

Andrzej, THis disease is so strange and I hope your dad finds treatment that will help him through it. He is still so young.
Will keep you and your dad in my prayers

[andrzej g.]

My Dear Ones,
Thank you for the words of comfort that I needed so much somewhere in the deepest of me. I feel stronger to cope alone with the events to come. That’s important for me now.
When I was 21 my mom was diagnosed with MM. She passed away within a year and till now I think of it as of one of the most cruel diseases one can imagine. My father helped her so much and was very very caring. Now – when ten years have passed – my father needs help though he doesn’t want to know it yet. And I am scared I will not meet the challenge.
My father and I live separated by 100 miles and that’s the reason to make the change. I’ll give up my job, get a half year sick leave and join him. I’m scared he might feel guilty about the revolution in my life.
But the truth is we build new worlds and we destroy it and the only hero that can deliver us from death (though not literally) is love.
My father is active and that’s marvellous, but I am so scared he might get infected with maybe even less than 400 of his granulocytes today (still climbing down, 900 in November).
As one of you has written in one of the vast many posts before, it is not common to be introduced to the last journey so that not everyone may prepare to it. It is a great gift but it conveys much of the incredible responsibility. Many people tend to turn away their sight when they face the irrevocable. I am so scared I will fail to communicate with my Dad. I am afraid to ask him what his thoughts are just because I am scared to trigger an avalanche. I wait for his signal to start the important conversation but he may expect exactly the same of me… He told me last week he did well just because he didn’t think much. I am scared to make him think.
As to the questions of cytogenetics – I told you, My Dear Ones – I don’t have it yet. Trepanobiopsy neither. Three weeks to wait. Today I talked to a good friend of mine, the hematologist from a decent medical center. He told me it is extremely rare for MDS to present with hypocellularity of the bone marrow and is correlated with dramatic prognosis so that usually no therapy works. Even the BMT nor the minitransplantation make no sense. Especially when in conjuction with the deletions within the 7th chromosome. As to the chemo: it may eradicate the bone marrow but no new cells arise. I expect the worst. If it is better sun will come up again. My father has a sister. The chances would be 1:4.
As for now hematologic directions for my Dad include no treatment except for (heh) vit. B6.
I am scared…
Have a Good Night, All of You
Respect
Andrzej

[Neil]

There may be a treatment for MDS that is Hypocellular.It is antilymphocyte globulin.
It is used on Aplastic Anemia patients who have hypocellular marrow. Since AA & MDS are similar and the hypocellular marrow is common in this case it may be worth a discussion with your hematologist friend.

[Suzanne]

I was hypocellular had raeb with a 5Q- (which is a bad sign in Raeb) I started with about 10% blasts when diagnosed went to the upper teens in about 6 months and then jumped to 75% and Acute myeloid Leukemia. I had induction and consolidation chemo-came out in remission and am now on a trial of Zarnestra for the 1st high risk year to try to hold the remission. My quality of life has been good throughout and I have continuesd to live alone and run my household except for when i was in the hospital so don’t give up. something mya help your Dad. It does sound like he may have secondary MDS (you mentioned thyroid and prostrate cancer) and I understand that that is harder to deal with. So many advances are happening recently in treatments that it gives all of us hope.

[andrzej g.]

My Dears – writing makes me feel better. Using the language I have not used for years is for me purifying – I try to express my feelings with words I don’t think in. They ooze out but it doesn’t mean the same as if I were writing in my mother tongue. I find it useful since the words convey emotions but do not paralyze me.
Suzanne, thank you for the post and for your experience you’re sharing with me and all of us.
Thank you, Neil, for the suggestion worth consulting my friend. It appears as one of the possibilities of treatment in the near future, though complications may turn to be even fatal.
Thanks to you, Eve, for your wishes and to you, Alexa, Paula and Terri, for your prayers. Though I don’t believe in any specific God, your prayers make me proud of being a human.
Thank you, Sarah, for the receipt. Thinking positive now is quite difficult. As always time is needed, I guess.
I decided to take SSRI just in case. My friend psychiatrist recommended me Cipril.
We all have to deal with difficulties too terrifying to be real but really happening.
It is almost like climbing with help of a moon beam instead of using the alpinistic stuff.
Featuristic is that as a doc I have learnt how to move out emotions, get rid of them in order of selfdefence. As a doc you must have empathy but you cannot afford to share other people’s feelings. It is too demanding. And too killing.
Now the emotions have come back to me multiplied…
My Dad was diagnosed with prostatic and thyroid cancers but he didn’t get any chemo nor radio since he would not need it.
It was diagnosed practically “in situ”, so surgery was the only treatment.
Option worth considering would be however that his MDS was secondary to the exposition to the x-rays at his workplace since he had been working in the 70’s and the 80’s for ca 10yrs as a traumatologist and operated with x-rays.
Love and Respect,
Andrzej

[B. Greene]

Please read again Suzanne’s post. We too were regarded as hopeless two years ago. It has been a bit of battle but know that there are things that can help. I don’t know if you have access to the same drugs we do or not but if so there are options. Please don’t give up hope once you do the battle is lost. Postive thinking has helped us as much as the meds. I feel sure. As for the hypocellular bit our is as well as are many others who are being treated and surviving with MANY MANY good days. We all must continue to have hope. Barbra

[vanguardsheet]

Dear Andrezej, my Dad has MDS and myelofibrosis. Recently, he’s undergone an SCT but the cells dont engraft well. Thus, his counts are low.

I am his only child and I am scared too. But I tell myself I must pull myself together to help him battle this. He was DX in 2001 and I can still recall vividly the pain and grief it caused me. Today, it still causes me to tear and I can fully share and understand the pain.

Please be strong and let’s us all be strong.

[andrzej g.]

That’s the pain with hypocellular MDS and myelofibrosis. The cells don’t engraft well. To make it even worse the statistics are terrifying when considering the older age, the excess of blasts, chromosomes abnormalities and cytopenia. But we have to be strong. No matter what happens. That’s the only path.
Within five days I move to my Dad to live with him.
These are probably gonna be our last months together.
SSRI’s make wonders. I feel stronger to cope with the fate.
Respect, Andrzej.

[Jack_dup1]

Dear Andrezej,
Some very wise people have given advice regarding your Father’s MDS. I am a 62 year old CMML patient and have a Son living in Warsaw, he was going through some difficult times with his marriage. Because he is my Son, I felt he was having problems. I did not want to interfere, so I waited for him to talk to me about it. He went though this for two years alone because we were each waiting for the other to bring up the subject. We finially had a long talk and both regret waiting so long. I tell people that I don’t think of the MDS often, that is a lie, there are times I think of nothing else, I just don’t talk to people about it, other than my Son and people on this forum. I am so glad he is there for me, we usually discuss it using humor which seems to help. Please give your Father every chance to discuss his MDS with you, it may take him time to open up, but he needs your strength and support.
Jack (Jacek)

[andrzej g.]

Jacek, this is the post I really needed. Thank you.
I’m preparing myself to the coming weekend.
There are so many things I would love to talk about to my father.
Keep well.
Andrzej (Andrew)

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