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Jimbob
MemberNeil, I am glad to see that you are recovering – well, at least to your normal. I was unable to post, again, for several weeks after I had clean-up my computer and wiped out cookies and things. Evenso, I had moved you to my “special prayers” list. As if most of the folks that post on this forum aren’t already there.
I am doing something a bit old fashioned for iron overload. Instead of exjade, I recently started theraputic phlebotomy (blood-letting). Tomorrow we go in for the second time. We will see if this will reduce the serum ferritin, get rid of some of the oversized red blood cells and maybe prompt my bone marrow to start producing a higher number of red blood cells.
MemberThis shows how much things change with these doseases. There appear to have been a number of successful trials with Gleevec being used on some forms of CMML. If there is a trial that is accepting patients, it might be worthwhile to get involved as the side-effects of the drug are less than the likely after-effects of a SCT.
I was treated at Oregon Health Science University Hospital, the Center of Excellence where Dr. Brian Drucker ran the first trial on Gleevec to show that it was an effective medication against CML. When I was first DX’d 4 1/2 years ago, they would not even consider using Gleevec and said that only a SCT would be effective against CMML. And Dr. Drucker did pop in on me a few times in the months before I had my transplant.
Again, things change. I would definitely suggest you check it out.
JimMemberNurse Mack,
I have followed Billy’s journal for almost 4 years. His father Bill provides great links on almost anything that you might question and has been very willing to answer questions. He also has links and contacts with many parents of child with various forms of blood diseases and cancer. June provided a great resource.
btw, when I first started my research on CMML, I kept getting refered to JMML (Juvenile Myelomonocytic Leukemia). Whatever it is, as Bill is likely to tell you, results are much more positive now than they were just a few years ago.
God Bless,
JimMemberSyn,
I was told that a history of smokeing can lead to problems at the cellular level. I had quit smoking 10 years before DX with CMML. The problem with ongoing smoking is that with MDS the blood often becomes less able to carry oxygen throughout the body and smoking makes it even more difficult. As a former smoker, and the cost is just another reason to quit. Use the money to get better nutrition instead.
JimMemberSorry, Chris. No one suggested I support Patti. After reading the crap that was getting slung, I had to respond. I do continue to read all of the posts I can. NONE of us know everything. We all learn from experience. A bit of information from even someone we do not normally agree with might be what sends us in the right direction and onto a path for recovery and better quality of life. Le’t try to keep the antagonism and bad experiences off this forum.
JimMemberI had a watery eye for a while and also used eue drops and covered it to make it feeel better. Then I went to my eye doctor and he gave me antibiotic eye drops and told me NOT to cover it. That only made the environment more friendly for bacterial growth – darkness and warmth. I hope Bob’s eye is doing better by now.
JimMemberThank you, Caroline. You are a lot stronger than I am and I also think Patti is a lot stronger than most for putting up with the abuse she takes. I do not take her information as gospel but I hope she continues to post as her information has been most helpful. It has led me to research many items that have been helpul. She has had a lot of experience with a number of different healthcare providers. She doesn’t claim that her way is the only way, just that it is what she has experienced. Again, I am grateful that she continues to post. I wiah I had her perseverence and committment.
JimMemberDoesn’t sound like the Puget Sound VA has any of the problems like what has been publicized about some of the others. Hope it works out well for you.
JimMembercheck out this website for VA Puget Sound:
http://www1.va.gov/pugetsound/page.cfm?pg=112Check out all of the MTU topics. Good information and timelines. Lodging information is very interesting. Nothing like it available around here.
JimMemberJonelle,
During the first fear after I was dx’d, I did have severe pancreatitis (SP), enlarged spleen and gall bladder problems. I had to have my gall bladder removed after the first round of chemo and radiation and then go through it all again before SCT. Now, more than 3 years after SCT, I definitely have acquired a big gut but no one has attributed to anything other than that I eat too much for the little activity I do.
JimMemberPatti,
I think your suggestion to check it out was a good idea. One never knows if part of the method of administration has to do with it disolving as designed in a liquid. I do know that most probiotics, for example, become useless if ground before taken. My MIL used to grind almost everything before taking it but some items HAD to be SLOWLY disloved – but that was years ago.
The insert and the information posted on the Novartis website for Exjade do NOT say that the Exjade pills cannot be ground up to make disolving quicker but neither do they suggest it. It might be worthwhile to ask that question to a company representative or the company directly.
JimMemberConnie,
At your blog I read that you are trying a number of soft, pungent cheeses. I have to wonder if these might not cause you a problem. It may be different, but after I had my SCT, the hospital’s written list of items not be be eaten for at least 180 days (later if white blood cell count was not high enough) included ALL soft, non-pasteurized cheeses. I couldn’t even have brie or blue cheese for almost a year because my counts were so low.MemberJune,
I had several books on nutrition, recepies, food and food prep for leukemia and cancer patients. Unfortunately, I gave them to others who needed them. You can most likely get books like that from the social service people at the hospitals that your dad haas been at. There are ways to make it easier and tastier to eat nutritious food without chewing.
JimMemberJune,
In addition to the response to your private message, google “chronic myelomonocytic leukemia” for more information on CMML but do not be distressed by any negative info or anything over 2 years old. Things have improved a lot recently.
JimMemberJan,
Even though she is not with yu physically, with all that you and your mother have shared, she will never be gone. From what you have told us of her, I wouldn’t doubt that she is very capable of improving the attitude even in heaven.
Jim -
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