After much delay, and my vacation, finally met and had my visit. It lasted 65 minutes. As mentioned in my other thread about
her remarks about
POM, I will repeat. She is well qualified, she only deals with nutrician and dietary needs concerning oncology patients. She has a masters degree in the subject, and 22 years of experience.
As far as my continuing issues with the loss of any appitite, the weight loss ( still averaging a pound a day), the lower stomach cramping and the back aches, she said that until the gastro doctor can run some tests and panels, there is only so much she can do or advise for now. She agreed that eliminating some underlying pancreatic problem was a big blessing, especially with my record.
She is suspicious, that I have may become gluten-intolerant, celiac (?). Not sure I am spelling the right. Told her I never had that as an issue, and why now? She said it can develop at any age in life, she has seen patients that develop it in their 70s and 80s. In later life, she said that trauma to the body alone can trigger it. And based on what I have been through the past 4 years with 9 operations and all the radiation fisaco, she said any of that could have done it, or it could be the results of the previous cancers and their operations, radiation, and other treatments.
She said the gastro doctor needs to quickly eliminate other sources, including colon issues, etc. She went into great length to explain the appitite loss. My body and brain is shutting off what is usually a normal process, hunger, thinking it is protecting or helping me. This is why it is so important to get to the root cause of the problem.
While I still have extra weight to lose in theory, she said not to be fooled, that I am still in danger of malnutrician despite even my current weight. She wants to see me in a month, after the other doctor has a chance to run whatever tests. She highly advised having that colonoscopy, even though she acknowledge there was risk to having it done after all the radiation damage. She also mentioned, that my problem could be the result of additional radiation damage showing its ugly face after nearly 3 years. I would almost tend to agree with that remark.
My oncologist, wants the other GI related issues sorted out, because he still has strong suspicions of bladder cancer, especially with the thick and ragged bladder walls that showed up on my most recent MRI's scans, and because of the increasing severity of pain associated with additional bladder spasms. Right now, the game plan is a process of elimination, narrowing things down.
I can not stomach the thought of eventually having to have my bladder removed, knowing how difficult my bladder by-pass surgery was, and its lengthy and painful recovery. It would be a high risk surgery, and could cause additional problems. I have enough QOL issues going on right now to cover 3-4 other guys combined.
Meanwhile, who knows where my PSA is at, since the rapid rise to 37 back in April. This will be answered at my October PC meeting with my oncologist.
For now, she suggested, for me to stay away from milk products of any type, and to eliminate obvious gluetn sources where possible until there is more information for her to work with after any upcoming tests. She doesn't want me resorting to the Ho Ho & Twinkie diet just to gain weight. She gave me a list of good calorie based foods to eat instead, so that along with getting calories, they will be the right type.
She is going to call my doctor and get in on the loop as tests are being done. I got good vibes from this meeting, and she showed a lot of genuine concern for what is going on. I will be taking her advice, and see what happens when we meet again in a month. She said if anything changes, to e-mail or call her immediately.
david in sc