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Nausea, Nutrition-other chemo side effects

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    Posted: Feb 02 2012 at 8:41pm
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; itís just that sometimes a patient needs a new perspective.

At different institutions they have different titles because palliative care=hospice in most peopleís minds and that is not what we are talking about here. Itís 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 isnít 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 donít 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. Smile

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
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 9:07pm
Steve,
I am not sure if my question is on topic with your opening post or not. (I apologize if so.)
While I was going through chemo, I did not have N/V, but I had great difficulty with my lower GI system, specifically diarrhea. I still suffer from that condition today, although not near as frequently as while going through chemo. I have been convinced that chemo sensitized my intestinal tract. My last chemo was in July 2010. Help me understand this palliative care. Would it assist me in keeping my condition in check so long after chemo was completed?
Thank you for your thoughts.
~ Nancy ~
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 10:23pm
Dear Nancy,

The bad news is that I donít have the answer to your question. The good news is that I asked a Palliative Care physician, who is a friend, two questions-

Will a palliative care unit see a patient a year and a half after chemo?

and will insurance pay for it?

I will let you know as soon as I have a response.

Recently my granddaughter made a mistake while she was reading a book to me...she reads to me every weekend and she messed up a word and said ďGrandpa, I am so sorry I got that wrong.Ē And, we established a rule...no sorryís are necessary between us regarding her reading...

so, Nancy letís have a rule, there are no sorry's here...

I sat with a woman and her husband for 3 hours recently before we saw her oncologist and we were preparing questions that she might ask if he didnít cover the information when he spoke..She said ďthis is a stupid question..I donít know if I should ask him?Ē I said, ďThere are no stupid questions, just a stupid disease. I suggest you ask him.Ē

I will try my best to get you some answers and I am very sorry you are still suffering. 7+ years after her treatment my daughter still has bone/joint pain from the Taxol and has chemobrain. For her, chemo seems to have done what it needed to do, but at a price.

warmly,

Steve


Edited by steve - Feb 02 2012 at 10:24pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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