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Jack_dup1Member
Hi Greg,
I haven’t been able to post lately. My numbers have started to climb the last few months. My WBC’s are at 29, mono’s 3500, platelets and RBC normal. My local Hematologist has suggested Vidaza, I have put it off. I am going to MD Anderson in Houston, March 21 for 3 days, to see what they have available, before I decide on Vidaza. I feel very healthy and work every other week. I mainly fight colds, my works requires me to fly wherever I go, so it’s hard to avoid the bugs. Give your Mother my regards and hang in there.
Jack R.Jack_dup1MemberRon and Barbra,
I could not agree more with you, in regards to Neil. He has brought a lot of calm to all of us through this storm called MDS. Two years ago when I was given the usual 10 to 60 months life expectancy, he was the voice of reason and re-assurance. I get so angry now when I read a new members post and it starts off with “the doctor say I have days, or months to live”, I can feel the fear and confusion the initial diagnoses brings.
I don’t always post, but I read them every day and have followed you and Barbra’s battle, it has given me strength and I thank you for sharing. I will keep you both in my thoughts and prayers, the battle is not over yet.
Jack R.Jack_dup1MemberAs a patient I have nothing but respect for the care givers on this site. You have the tough job. When it comes to my spouse, I would rather be the patient, I can’t imagine going through the pain of watching my loved one go through this. I read with awe the posts from the care givers, your fighters and thats what we need, but even fighters can feel overwelmed at times, thats why were here, to support each other. I hope this made sense. I don’t do well at expressing myself.
JackJack_dup1MemberHi Jody,
In regards to the Gleevac, it could be a good thing. I was on a Gleevac trial, but I do not have that chromosone abnormality, only about 2% of CMML patients do. I will keep you both in my thoughts and prayers.
JackJack_dup1MemberAndrzej,
Have you looking into this one?
JackJagiellonian University
Collegium Medicum
Krakow, Poland
Aleksander Skotnicki, MD, PhDJack_dup1MemberI fly at least every other week for my job as a Field Service Engineer. I try to avoid crowds, wash my hands frequently. Now is cold season and it is impossible to avoid people coughing and sneezing. I’ve been thinking about wearing a mask, I just haven’t got to that point yet. I came home last week with a cold after being in San Jose for a week, next week Phoenix. My biggest worry is being away from home and getting ill.
Jack
JackJack_dup1MemberDear 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)Jack_dup1MemberI did a 6 week trial for Gleevac at the NIH, which did not change anything. I was told going into it that it only worked on 2% of CMML patients. The good thing was that I suffered no ill effects, so it was worth the effort. My chromosones are normal and it is effective on a certain chromosone abnormality. Hope your Mom is in the 2%, someone has to be.
JackJack_dup1MemberEve,
I may be way off base with this, my understanding is that I should pay more attention to the # than the %. The NE,LY,MO,BA,EO make up 100% of your WBC. If one increases, something else has to decrease. If the NE% goes way up, it would make sense that the LY% would decrease. I know it does not explain what caused one to increase or decrease.
I won’t be offended if someone says I’m wrong about looking at it this way.
JackJack_dup1MemberHi Jody,
I was on Gleevac for 6 weeks with no change in numbers. At this point they say I am to healthy for SCT, my sister is a perfect match. My mono’s are climbing, they are at 5100. Local Hemo says it’s time to think about Vidaza, Cen. of Excell. hemo says to wait. My WBC is 23, plt 118,000, rbc normal. I feel good, just tire easily.
Regards
JackJack_dup1MemberJody,
Glad to hear her platelets are up, that’s a great count. How are her wbc’s and rbc’s?
It’s nice to hear good news.
JackJack_dup1MemberCongradulation on the new Grandson, nothing can boost your spirits like a new addition to the family.
JackJack_dup1MemberKate,
Sorry to hear about George, hope things improve soon.
JackJack_dup1MemberHi Edith,
I to am sorry to welcome you to the board, but it is the right place to discover different options. By CMML2 I assume yours is secondary because past Cancer treatments for something else. I was diagnosed April 03. My RBC’s are normal, but had low platelet and low WBC, now platelets are pretty good (118,000), WBC is 23.6 and climbing monthly. CMMl is a hard one to treat, we don’t fall into a fixed catagory, we are both MDS, MPD. There are trials out there, you just have to hunt for them. What is you age, and did your BMP show any chromosone abnormality.
First of all, done go by the survival time they give you, it is different for all of us. Don’t be afraid to question you Doc, and ask for copies of all work you have done, keep you won records. Others can help you more than I. Good luck, and don’t let it get you down, it can consume your thoughts if you let it.
Jack R -
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