update

[Kathryn]

Hey everyone,

I don’t have internet at home so it has been a challenge keeping up w/ the board. I think of you all often and am sending you my best wishes….

My dad isn’t doing too well. I have been holding off updating because things continue to change…. He had a platelet tx. last Monday and by Friday eve. he was having nose bleeds that wouldn’t stop… He had another tx. on Sunday, two bags. He is getting weaker and just not feeling well. I am so afraid of the day that his legs will no longer hold him up……Tuesday he went to a marrow specialist to see if he was a candidate for an experimental drug they have begun to use on CMML patients, but he is not. It is in the first phase and it is too risky for someone of his age and health. They are doing it at John Hopkins & MD Anderson, but don’t have many patients to participate since CMML is rather rare… The other experimental drug he has been waiting for is available, but is out of the question now as well. His blasts are too high…. Both doctors feel he wouldn’t survive induction chemo, so at this moment, his only options are the Trisenox or supportive treatment (transfusions, doc. visits, etc.). It is hard to weigh what the best route to take would be… The Trisenox could slow the progression, but I am not sure if it would even work or what his quality of life would be… Depending upon what course he takes, the doc. said he could only have 2 to 3 months. Maybe they will come up w/ some other options this week…. I sure hope so…..

If anyone has any suggestions to better his quality of life, expecially if his only choice is the supportive treatment, I would greatly appreciate them. I would like to see him be able to make the most of it for as long as possible.

Take care.

w/ love,

Kathryn

[patti]

Kathryn,

My mother-in-law is on supportive care only and she has found she feels her absolute best when she’s eating a very good diet. No sugar, no white flour, lots of fruit and vegetables. She also tries to get some fresh air everyday. That’s hard here in rainy Oregon but she goes outside in her yard even if it’s just between rain showers for a few minutes. There’s something about fresh air that helps the body feel better. Mom is grateful she feels good because like your dad, she doesn’t have much in the way of treatment options. Mom also takes a lot of vitamins and minerals to just strengthen her body. If you could find a good naturepath that works with cancer (doesn’t really matter what kind), they’ll just know what kind of supplements he could take that would help him feel stronger (ie. multi-vit. no iron, B12, etc). The thing mom has been most grateful for is that until this past weekend she has felt terrific. She was diag. is Aug. 04 and really has felt good since then and we really attribute it to her healthy eating, sunshine, vits., etc.

Hang in there, Kathryn. This is a hard time. I understand your worry. Take a deep breath and pray.

Patti

[shirlsgirl]

Hi Kathryn,

I’m so sorry about your Dad. Would the Trisenox lower his blasts so that he would be a candidate for the drug? I cannot even begin to imagine what you and your family are going through. Hopefully your Dad’s doc’s will be able to come up with a good plan of action to make your Dad comfortable and to keep him around for a long time to come.

Take care and Hang in there,

Jody

[Kathryn]

Thanks so much you guys… This is such a strange journey… I was at my father’s today. We were there to get 37 years of wood that he had collected out of his back basement. He loves to work w/ wood and saved all kinds of pieces thinking that one day he would use them…. Well, since they previously had their house on the market, the wood was something that they/he wanted cleared out. It was apparent that it would never be used. Since he has become weaker, he REALLY wanted it out; I think so that my step. wouldn’t get burdened w/ it and it is one area of his life that he can control. I know he feels a lot better now that is is gone; one less thing to worry about.

He tells us how badly he feels, however, he is still making himself move about, going out to Saturday breakfasts, etc.. He does eat pretty well….sort of… tiny meals, makes himself eat. His best meal is dinner and he takes some pills called Juice Plus, that are supposed to be very good.

He goes to the doctor again on Monday and I am sure they will discuss the pros & cons of taking the Trisenox. His only options at this point are supportive treatment & the Trisenox. His blasts would need to be at 5% and his are over 30%.

Overall he is ok… I am spending some very meaningful time w/ him and that has been wonderful. We are hoping to take him to Stone Mountain (a mtn. of granite here in Georgia, beautiful park)very w/in the next couple of weeks. It is as far as he wants to travel, so the beach is out, and it is a very special place to him and our family.

Thanks again for your encouragement. Take care.

Wishing you the best,

Kathryn

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