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jonelle
MemberExcellent point, Jack!
I am originally from NJ (Morris County) & have been following your posts. Thank you so much for your input.
Your wife’s success with her treatments have given me (& I’m sure others) much hope & optimism. Best wishes to her & you!MemberHello Jack,
My husband also has CMML & a hernia – and the specialist said absolutely not – no surgery. My question is… if he is healthy enough to get a BMT, why can’t this be treated first? Also, I’ve noticed that you don’t list a BMT or SCT in your profile. Was it an option for you?
Best of luck to you with your surgeon!MemberHi Mary,
When my husband was first diagnosed, he still felt fine (10/06). He mentioned to his oncologist that he felt bloated & uncomfortable. His stomach also appeared very distended. They took an X-ray or CT scan of him & discovered his left kidney appeared to be blocked up.(but his creatinine level & BUN were okay)
He was instructed to go to a urologist, who then preformed a biopsy thru the urethra(11/06). It was a nightmare! Not only did he not get any tissue, but it was discovered that the kidney wasn’t even blocked – that the reason it showed up dark on the film was because it was being pressed by other organs…The “out-patient” procedure had him hospitalized 2 days later with excessive bleeding & much pain & discomfort.
Needless to say, this was the beginning of all his problems. All winter long he was in & out of the hospital with other complications. But his oncologist doesn’t think the procedure had anything to do with it. That all his problems were due to the CMML.
At this point he is under the care of a nephrologist, his creatinine level & BUN & blood pressure are all critically high. He’s not on dialysis – but Dr seems to think that the damage is done & that the condition will not get better. Sorry to go on & on about this – but it will always be a question in my mind if the damage was caused by the urologist.
So to answer your question, kidney problems & high blood pressure started before the Dacogen treatments…
Thank you, Mary, for your words of encouragement…will keep you posted.MemberJust found an answer in case anyone is interested – http://www.2ndwind.org/transplantation/organ_donation/index.html
– has info on this subject. What a wonderful contribution any healthy individual can make to his/her fellow human beings!!“Tissue donation has become an increasingly important area to cover in any discussion on donation. Tissue donation can occur even when someone dies at home. Tissues that can be donated include skin, bone, bone marrow, corneas (from the eyes), and heart valves. Skin grafts are used for burn victims; bone is molded and used in reconstructive surgery; corneas are transplanted to give sight; and heart valves are used in valve replacement surgery. A donor who donates everything can save up to seven people and benefit up to 50 people. Even then an open casket funeral is possible as all organs and tissues are removed by skilled surgeons. “
MemberTerri, I am so very sorry for your loss of Bob. May God bless you and your family.
MemberHi Wendy,
From what the Dr says he has responded extremely well with Dacogen. His CBC numbers are far from normal. What puzzles me – is that when he was first diagnosed the Dr said BMT was “out of the question”. Now, Dr is all gung-ho for a BMT. I guess I was under the false impression that a BMT was the last resort. I know that it is the only way to be ‘cured’, so I am optimistic.
I am looking forward to what Shands has to say – I am trying to write down as many questions as I can to be prepared.
Best wishes to your Dad.MemberHello Mike,
Wondering how you are doing…Hopefully you are feeling well and are out and about enjoying life!
Please post a note.
Thanks!MemberThank you so much Greg & Jack. Your responses are very helpful!
MemberHi Mary,
I am very fortunate to live year round in beautiful Naples. (Except for the jokes…like what is the first thing you do when you find out you’re sick in Naples?…Buy a plane ticket!)
Luckily, we dis-proved that remark, although it was touch&go at first. His oncologist is Dr Morris at NCH. We really like him & his staff. Diagnosis & treatment plan was verified by MD Anderson(Dr.Beran)in Houston. Search for a match has not begun yet…but he doesn’t have any family members.
I’ve heard of the Cancer Specialist Center but am not vey familiar with it. Hopefully your Dr is compassionate & informative.
Best of luck to you & your husband.MemberDear Patti, Jack & SandyB,
I so appreciate all the responses and as I have seen time & again on this forum that there isn’t a standard answer to many of the questions we all have…
Patti, as you mentioned, I am sure that the Dr is indeed working on behalf of my Hb’s best interests and that if he felt it was an issue he would let us know. And please don’t be discouraged from posting on this forum! So many of us are eager to learn and get feedback from those who have experienced it first hand…
Questions, thoughts & ideas are expressed here that perhaps would be too itimidating to bring up face to face with the Dr. Among other reasons, this forum provides us Newbies with a way of “testing the waters”.
Again, thank you all.
JonelleMemberMy husband was scheduled to have a CBC a few days ago. I specifically requested from the Dr that a slide review for blast cell count be done.
Got the results today and the Dr casually mentioned to my Hb that there were 1% to 2% blasts detected. However, I noticed that it doesn’t appear on the CBC print out.
How can he throw a number out there without any indication on the test?
Unfortunately, we have a Mom & Pop business. While Pop is at the Dr, Mom must be at the shop. I got the info too late to get in touch w/Dr.
Sorry to vent – but I am disgusted… I wish my Hb would be more interested in keeping up with the pertinent info.MemberStephen, I am so happy for you!!
My husband, Jack, has completed his 3rd round of dacogen, he is doing much better. But the Dr. recommends another 3 rounds.
Jack doesn’t want to do it simply because the Dr. isn’t able to convince him that it is necessary. Jack wants to wait a bit. Can anyone suggest a reason why it has to be done again so quickly?
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