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Jack_dup1Member
Russ- I considered the Zarnestra very successful, although they said I had the best response of all on the trial and lasted the longest. I wish I would have started it earlier, it may have prevented my liver and spleen problems, five years ago there was not much available. The disease has away of eventually finding a flaw in the drugs and going after it.
Mary- the O2 is for shortness of breath and the o2 definitely helps. I have an o2/pulse monitor and discovered my O2% drops down into the 80’s and usually coincides with the shortness of breath. At night my O2% sometimes drops into the 60’s/70’s. The O2 prevents this. My pulmonary function test are low normal, no apparent lung damage or disease. I’m having some bad memory problems lately and believe it is lack of O2. Have a terrible time finishing a thought. It started with the O2 problem. The 02 problem is not consistent. It comes and goes.
Jack S.
Jack_dup1MemberNeil,
You are a tougher man than I am.
All the best.
JackJack_dup1MemberI just can’t believe that non of you have had false low platelet counts due to platelet clumping, Google it, I was amazed at the lack of comment or sharing of experience on the subject
JackJack_dup1MemberI just can’t believe that non of you have had false low platelet counts due to platelet clumping, Google it, I was amazed at the lack of comment or sharing of experience on the subject
JackJack_dup1MemberMorticia,
I agree with Zoe, I had a blood test this morning and had a hard copy for myself 10 minutes later.
I can’t answer your main question. If it were me, I would want to know what my oxygen % is and get my lungs checked out, I have had some of the symptoms you mentioned, I did have a still undiagnosed problems with my lungs, they treated it with steroids and I was fine in a few days. There are several things that can result in some of the symptoms you have. If they find that you are anemic that could explain it, I would assume that they looked at your red blood cells when you had your last blood work done. Although I find that you cannot assume anything when it comes to your medical care.
We are all so different when it comes to symptoms. It is a scary thing and one tends to think the worse, at least I do, but on the other hand I am usually pleasantly surprised. I was given 10-60 months survival with a median of 20 months. It has now been 58 months and I plan on being around for a while. Wish I could be more help.
Think positive thoughts, I have spent a lot of time on needless worry.
JackJack_dup1MemberI have had a mystery lung problem for some months, it comes and goes, I get very short of breath, I carry an oxypulsmeter, my 02 drops into the mid 80%, it lasts for a few days and goes away, The last time I waited to long for treatment and my O2% was in mid 70’s. They did CAT scan with dye because my creatine was to high. I showed two PE plus pneu. in both lungs, my Doc actually drove me from his office to the hospital. They did 5 CATs and a PET scan, and an open lung biopsy which left me with and 8 in scar and missing a partial rib. They said my lungs were looking through frosted glass and sounded like bubble wrap. They cound not decide what is was or how to treat it, by shortness of breath worsened. They finally started me on Prednisone and after 5 days I started to improve, I spent 21 days in the hospital, when I left it was without the use of Oxygen and have not used it since. It has been over a month, no fevers or night sweats, or shortness of breath, just a sense of being tired and weak with shaky hands.
Then can not tell me what the problem was, most tests came back neg. I did not think I was going to make it for a while. They are not even sure how it ties in with the CMML.
JackJack_dup1MemberKatie,
I am so sorry for your loss, it was a long struggle for your Dad and the family. When it is my time, I would like to go just like your Dad, it was the best of a bad situation.
Thank you for keeping us informed
JackJack_dup1MemberThanks Shari,
I find the lack of response interest in this post surprising, I quess I shouldn’t, it was the same when I posted about zarnestra. I think it is time to find a new web site. I will e-mail you the bmb results.
Regards
JackJack_dup1MemberShari,
Last week my platelets dropped to an all time low of 13, and whites dropped to 5, this week they were 24 and 5.4, so that is a good thing. I had a BMB yesterday and will have results on Monday. My HBG has returned to normal, my monocytes have also returned to normal. It is a nervous time for me right now, my platelets have never been this low and hopefully they will continue to increase. This is always a roller coaster. My spleen feels great
They will not allow me back on Zarnestra until my platelets go over 50. I have been of it for 8 weeks. Tell your Dad to be patient in regards to the counts, it will take time, that is easy for me to say, considering I sit here every day and fret about my own counts. Good news about the -5q. remember that my rad. treatment ended 4 weeks ago, so it does take time and we all respond differently.
JackJack_dup1Memberfrom now on, assume ER doctors are idiots,because they assume you are. Then you can be pleasantly surprised when they get something correct. I went to the ER last month for shortness of breath and fever, without O2 my percentage was 82%, he was going to send me home without O2, when I asked about it, he actually said “you know, Oxygen can be bad for you”, at that point I insisted on O2, went home and then to my Doc on Monday, ended up spending 21 days in the hospital and having an open lung biopsy. You have to be assertive with these people.
JackJack_dup1MemberShari,
My reds were back to normal, whites were 28, platelets were very low for me, 25. I go to Omaha tomorrow and hopefully will get back on the Zarnestra. No problem with the spleen, my appetite has returned and stomach is much better, I had a slight nausea feeling for a few days. It’s funny, now that my spleen is down, I can see how enlarged my liver is, they were an even match, it gives me no problems.
give your dad my best.
JackJack_dup1MemberI’ve had a little experience with CMML. I was diagnosed April 2003, following a routine blood test that showed slightly low platelets and low whites, since then it has progressed to slightly low platelets (MDS) to high whites (MPD). I to have had spleen problems, not like your, mine was quite enlarged and hard, I can feel it quite easily. The Doc said she wished she had some students with her my last visit just to feel it. If you e-mail me, I will be glad to add further info including a spreadsheet of my counts for the last 4.5 years. We are all different, but it may help a little. Learn all you can and don’t believe everything you read, especially prognoses.
Jack
j.saffell@mchsi.comJack_dup1MemberShari,
My reds did recover after the transfusions, these were the first transfusions I have required. I get my counts checked next week and will let you know how they hold, over the long term, who knows, they just guess.
I agree with with your Dad, my spleen bothered more as my whites increased. I am pretty tender there and all around that area, I had a massive amount of quick water weight and loss around the mid section, about 26 pds which confounded things.
We are all so different that one size just does not fit all. Keep me posted on the Revlimid, that may be my next option if the Zarnestra fails.
Jack
JackJack_dup1MemberHi Shari,
It regards to radiating the spleen, it was nothing, I have has a little nausea, thats all. My whites went down immediately, how long they stay down is the question, It did lower my HBG and I needed 6 units of blood. They radiate, then check counts and xray the spleen before next treatment to ensure counts don’t drop to far. I will continue my Zarnestra trial in the mean time..
I think you already know that I also go to the Med Center in Omaha for my Zarnestra trial, my hospital stay and radiation was in Des Moines.
JackJack_dup1MemberThe hernia surgery was 3 weeks ago and it did have some complications, excessive bleeding resulted in very heavy bruising and excessive swelling of groin area, had a catheter for 2 weeks which caused a bladder infection and fever.
All is better now, I hope to resume daily walks next week.
I had my 11th BMB last week and the Zarnestra is still doing it’s job, I have been on it one year. My blasts in marrow have dropped from 4.8 to 1%, my platelets today were 155, highest readings since 1999. My whites stay around 20, which is a lot better than 45 when I started the trial.
Like a lot of us, my biggest complaint is lack of energy and concentration.
Jack -
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