[Jimbob]

Interesting, the local chapter of the Leukemia & Lymphoma Society here in Portland OR is having a major patient education program this Saturday to explain the following:
“Using Natural Medicines in Combination with Chemotherapy”
“The role of Naturapathic Medicine in the Treatment of Cancer”,
“Acupunture and Chemotherapy”,
“Mind/Body Practices for Cancer Patients”, and “Health and Energy Dynamics”
Looks like more and more conventional medical providers are opening up more and more to alternative and comlimentary possibilities.
Jim

[Jimbob]

I wish more of us had the ability to maitain a running journal like Bill is doing for his son little Billy.
http://wm-c-gowacki.com/BILLY56.html
He not only posted a great journal but has links to explain diagnosis, treatments, medications, etc. It would be sooo helpful for the readers to have something to compare with and hope for and for the individual to see wht has already been accomplished that was probably worse than what is going on now. Do I make sense?
Jim

[Jimbob]

I am only guessing and putting some of my feelings into his situation. It is tough on some people but especially men. He may well feel that he already owes them his life and may have been at a loss as to how to express his appreciation. To go back and ask again is something he may feel that he does not deserve??

[Jimbob]

Quite a few have tried Gleevac. It does work well on some forms of CML. The original trials to get it approved for treatment of CML was done at Oregon Health and Science University Hospital by Dr. Drucker. This is where I have been treated. They insisted that it would NOT work for most forms of CMML unless there certain markers. Jack in Colorado (?) has CMML and his docs did try Gleevac but to no avail. I did have to go with SCT to beat CMML. Jim

[Jimbob]

Carrie,
Unload anytime. You are carrying to much of a burden to NOT share it. Did your hospital offer any suggestions for financial assistance or fund raising? (I can go through booklets I was given for some suggestions, but social services should have something for you.) Or how to appeal a negative response from your insurance company. Or does your dad belong to any organizations that might do fund raising on his behalf?

[Jimbob]

Drew,
I was fortunate to work for a company that put me on short term disability at 75% pay as soon as I was DXd. I am now on long term disability at 60% pat and able to keep my isnurance as long as I pay the premiums. She should check with her employer to see if such is available.
Also, check with life insurance to see if she has waiver of premiums or advance benefits payment. Regardless, do what you can to keep her spirits up and her attitude positive. I think that is an important key. Jim

[Jimbob]

Marsh,
So glad to hear from you! SCT is no picnic but when you need it, it is great to be able to get it. Do NOT try to push yourself too much to regain independence. Many of us who have have suffered setbacks. At the beginning it is great just to maintain what you currently have and not expose yourself to crowds, too much stress of any kind or even slightly sick people.
Again, so glad to hear from you.
Jim

[Jimbob]

Alexa,
Exams and trying to maintain a “normal” structure are tough enough. Add to the all you are doing to fight this disease and you can expect more than a few dark days but know that there are many people here to help you keep going.
Jim

[Jimbob]

Neil,
Sorry about your Mom’s condition. Hope and pray for peace and comfort for both of you. Do not want this to trigger a bad reaction in you. Jim

[Jimbob]

I went into the hospital a year ago at 238, shot up to 293 with fuid retention in just a few days but was back to 240 by the end of the month. I weighed 238 when I has SCT March 30 and dwon to 200 21 days later. Now am at 167 which docs say is just fine; right where I should be.
Jim

[Jimbob]

When they harvested the cells from my brother, they told, they would rather use it right away to prevent mixture with DMSO but could freeze it indefinitely with no damage to the cells or overall outcome. My SCT was held up for about a month due to low neuts and overall WBC count. Also, had a severe gallbladder attack and had to have it removed. They did take an extra bag for possible future use. Jim

[Jimbob]

Neil, Sorry to hear about your mom’s condition. Know that we are here to support you. Maybe together we cann do for you what you have done for us.
Jim

[Jimbob]

I had pneumonia twice with fungal infection. They went down my throat with a tube with a camera and some kind of clipperrs on the end. It was not too bad except for the last 5 minutes or so. They could not give me anymore pain killeer and had to get the sample. Evenso, they were not able to determine what had caused the fungal infection. I don’t remember all the things they treated it with but believe that one of the items was augmentum cl. It was rough at the time because we had been forced out of our home for over 2 months to get the kitchen rebuilt after discovering a leak from the dishwasher had soaked the subflooring and worked its way up through the tile and cabinets. Repairs STILL not complete but area is usable. Jim

[Jimbob]

Bill, I have gotten most of the books free at the BMT clinic at OHSU. Have you asked the social service workers if they have them available for you. If you are near Portland, I would be happy to give you what I have – or directions to OHSU where they have piles of the booklets and pamphlets that I did not get. Jim

[Jimbob]

I’ll try, too.
BTW, had CBC today and also cyto-something results from last BMB. Says best testing methods show me to be CMML-free with at least 95% of cells to be donor. Could be 100% as they can’t find any of my own old cells, but they “could” be some. Jim

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