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RT and
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01/07/2014 22:06
spanishbuddha 

Administrator

01/07/2014 22:06
spanishbuddha 

Administrator

Re: RT and

callie

Thanks for sharing this information.

Our thoughts are with you, please stay in touch.

SB

01/07/2014 23:54
GaryBall 
01/07/2014 23:54
GaryBall 
Re: RT and

callie:
This could just be a coincidence, but I will put it out here.

As some of you might remember, I was diagnosed with MDS/AML (Acute Myeloid Luekemia) November 2013. I have never been admitted to a hospital before that time and the only ailment that I have had was Dupuytren's. I have been healthy my entire life and currently my father is 96 years old and has never had a prescription. I have had routine blood tests (CBC) from my primary care physician ever 6 months. The interesting information is that they have backtracked and graphed my blood tests. Everything was completely normal for years (linear, level and normal on the graphs) until right after my first round (15 Gy) of radiation for Dupuytren's. Platelets dropped below normal range within a month. Following the second round (15 Gy additional) the numbers for blood platelets, red and white cells "dropped off the table".

Again, this could be a coincidence, and probably is, but the timing of this couldn't have been closer. The AML diagnosis is pretty serious if you are not aware. I hope to make it another year. Should be getting a bone marrow transplant within 6 months. It almost seems trivial now about some of the decisions and worries about the different Dupuytren's procedures.

P.S. I have really enjoyed being on this forum for several years and really have appreciated all of the comments. I will stick with it as long as possible.
Wishing you the very best Callie....

01/07/2014 23:59
juliebeesley 
01/07/2014 23:59
juliebeesley 
Re: RT and

This is very heavy indeed :( I was considering getting RT for a nodule but I certainly will not now after hearing of your experience. I would be worried the whole time.

Thanks for sharing this and I wish you all the best x

01/08/2014 04:13
callie 
01/08/2014 04:13
callie 
Re: RT and

I still believe that this could be coincidence. It was just a very timely coincidence. Irradiation is just one of the possible triggers for this disease. I mentioned it so if it pops up for someone else after I am gone, it might add to some thought.

01/08/2014 04:35
pia2some 
01/08/2014 04:35
pia2some 
Re: RT and

Callie,

I have been gone from the board for a while. This was the first thread I read. My heart is heavy for you tonight. I am so sorry you are having to go through this. You will be in my thoughts and prayers.

~ dawn

01/08/2014 13:30
Jolene 
01/08/2014 13:30
Jolene 
Re: RT and

Hi Callie,

I am so very sorry. If I could wave a magic wand and make this go away I would do it in a heartbeat. Please know I will keep you and your family in prayer.
Is there any form of treatment regime that you plan to embark on?

Jolene

01/08/2014 16:12
callie 
01/08/2014 16:12
callie 
Re: RT and

Thank you for the kind thoughts. I am currently on chemo (Vidaza) which if it works (only works for about 40 percent of patients) on average extends life expectancy an additional seven months. Next step is a bone marrow transplant which is very risky with the remote possibility (less than 5 percent) of extending life for 5 years. However the average life expectancy after transplant is 101 days.

As this relates to Dupuytren's, it is a disease which has no cure, but considerably more serious. The nice thing about Dupuytren's is that the problems now seem so trivial compared to so many other diseases that will cause death in a very short time period. It almost makes me feel disappointed that I ever had a complaint about the problems created by Dupuytren's. The end of life for MDS/AML is not pleasant, continuous Dr. appointments, blood tested weekly, bone marrow biopsies and if having a transplant with a 100 day life (after transplant) very close to the transplant facility in a sterile environment.

I am still in the stage of processing this and will be hesitant to bring this up in the future on this forum. I now am a participant in another forum for MDS/AML.

I wish everyone with Dupuytren's the best. I have enjoyed the discussions with everyone on this great forum. I will still be here for awhile because I think Dupuytren's is an interesting disease.

Edited 01/08/14 18:15

01/08/2014 16:44
Jolene 
01/08/2014 16:44
Jolene 
Re: RT and

Hi Callie,

Thank you for taking the time and sharing all of this with us. My heart is so broken for you.

How long have you been taking the chemo?
Have you begun to experience its side effect?
What are the side effect on this particular chemo?

I can not even imagine how in the world you are processing all of this.

Please keep in mind. There are those people who have out live the odds for a much longer period of time then what the doctors state the average life expectancy is.
My sister n law was diagnosed with the worst case of bone cancer & leukemia. The doctors gave her a life expectancy of 12 months. She lived 12 years. She went to the research center for bone cancer located in Arkansas. They tested her with many different type of chemo drugs. She spent the most of her 12 years with no hair but was healthy enough to travel, etc.

I do realize your cancer is different. I only mention this because I want to point out that people do exceed the life expectancy. So I will continue to pray for you to be one of those people.

Jolene

01/08/2014 23:49
callie 
01/08/2014 23:49
callie 
Re: RT and

Jolene,

I really appreciate the positive thoughts and experiences. I am a researcher at heart which is good and bad in some ways.

The chemo is called Vidaza and is generally tolerated well. I get two shots per day in the stomach for seven straight days. Then there is a 21 day recoup period before the next cycle. I take a nausea pill one hour before the shots. It is mostly a "crummy" feeling like if you were to eat about four donuts. I have gone through one cycle. These shots are given at a cancer center. Some people can go through several cycles in the attempt to get the blood counts and blasts (immature blood cells that never mature) in a position for a bone marrow transplant. The survival of a transplant can get a couple of more years, but what a process. Before the transplant there is more chemo and radiation.

I have always wondered what would be the disease or event that would take me down. Never considered either MDS or AML. The mind games are interesting especially since I have been healthy my whole life. That will help for the transplant.
----------

This is my line.

age 67, dx MDS RAEB-2 11-26-2013: pancytopenia WBC 3.8k, Hgb 12.8, HCT 36.1, Plt 34k, RBC 3.69; cytogenetics – no abnormalities, 9-11% blasts. Start Vidaza 12-16-2013.

01/09/2014 23:00
nanshands 
01/09/2014 23:00
nanshands 
Re: RT and

Hi Callie,

I know there is little we can do for you, but just express our continued thoughts and prayers for you. So that is what I'm doing.

Though hard to read of your situation and the timing of your cancer with RT I agree it was important for you to share. Perhaps, even something for those who move ahead with RT to even consider getting some pre-blood work and post blood-work done. Not a bad idea.

I hope you find some comfort in knowing others are thinking of you, along with those you encounter in your new on-line forum.

Praying for you, Nan

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