Dear all,
There have been several threads/posts recently on folks having a poor appetite, difficulty keeping food down and/or being violently nauseous. Sandra was the latest with awful GI side effects from the chemo.
This has been a problem that can be very difficult to solve and I wanted to suggest that if you are able to
see some palliative care specialists who deal with symptom management/supportive care they may have some helpful suggestions. I would try this route if the oncology/infusion nurse has not been successful with your problem. Having said that I am a huge fan of these nurses; it’s just that sometimes a patient needs a new perspective.
At different institutions they have different titles because palliative care=hospice in most people’s minds and that is not what we are talking about here. It’s an unfortunate link but it is what it is.
Here are some units at different cancer centers that I know have supportive care experts who can help folks going through chemo.
at Memorial Sloan-Kettering Hospital in NYC. A woman I was helping found the professionals there knowledgeable and helpful in several areas-pain and breathing difficulties among others.
at MD Anderson Cancer Center in Houston I accompanied a woman who again was helped by the palliative care folks with pain management. I found the professionals there very professional and compassionate. I found one, in particular, who was outstanding. Dr. Shalini Dalal.
at Mayo Clinic-Rochester they had a palliative care unit before the word hospice was used. They crafted a special diet, successfully, for a woman who was having great difficulties.
There are many palliative care clinics/departments across the country. If there isn’t one at the center where you are receiving your infusions there may be one nearby.
There may be no magic wand, for some, even after seeing the supportive care folks but I fee strongly that it is worth a try.
Also, at times oncologists don’t want to lose control of their patients and they are not helpful, unfortunately, referring patients to the palliative care units. That is unfortunate but, at times it is the reality. The mark of an excellent oncologist, in my mind, is the one who told me recently "I refer people to the palliative care unit here because they do a better job on the various issues than I do." I wish I could clone him.
If anyone is having trouble finding a good unit please send me a PM and I will try to help.
warmly,
Steve
Edited by steve - Feb 02 2012 at 8:51pm