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The Living With Cancer patient conference was held Jan. 14-15 in Scottsdale, AZ., with more than 450 people in attendance. It was a tremendous opportunity to meet and get the latest updates from Mayo Clinic cancer care experts. The event received excellent feedback and positive reviews from attendees.
The main session videos are now on the Mayo Clinic website, www.mayoclinic.org/arizona/living-with-cancer.html.
I attended and have a few highlights to share:
These are just a few of the highlights. Feel free to share any others that you have if you were in attendance, or add to the discussion here on the blog.
Sheryl M. Ness, R.N.
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- there are many other options aalalibve in the US.The real question is BETTER than chemo or radiation really better? I'm a Cancer survivor who owes his life to chemo and radiation therapy. It worked for me. Cancer Treatment Centers of America bases it's advertising on providing the most and best therapy's aalalibve for Cancer. I may be biased, being an American- but even so, the research I've done rates America's treatments, drugs, and general procedures a healthy cut above the rest of the world. I guess my best advice based on my opinion- would be to go with the usual course of treatment prescribed , unless the prognosis or results were terminal.
Daphne - I agree with Cathy about the Imodium. I had surgery for ovarian cancer 18 months ago and lost my right colon and sigmoid colon. I did not have radiation but finished chemo almost a year ago and that was when my system began to regulate itself. I was told that it was okay to use Imodium since it helps slow down the bowel activity. Now, if anything seems to be getting out of control I take a pill just to bring it back to "normal". Be careful not to overdo because you don't want to become constipated. For the anal area, I have a couple creams that helped soothe the area and prevent infection: Cavilon durable barrier cream from 3M and Calazine skin protectorant paste w/zinc oxide from Medline. Good luck and know that it does get better.
My PSA following a prosectomy indicated some residual cancer. Forty treatmants of direct beam radiation followed but PSA continued to rise. Enrolled in clinical research study involving chemo,Taxotere, and hormone shots. Ten chemo treatments over 5 months and total of six hormone injections, one every 3 months. Chemo completed two months ago and now half way thru Hormone treatments. PSA now is non detectable and I'm thankful and feeling good about the cancer issue, however, I developed spinal stinosis mid-way thru chemo and shortly after second hormone treatment. Never had this problem before. Five months now and my ability to move around greatly hampered. Any thoughts if radiation, chemo or hormone treatment could have precipitated this problem ? My oncologist says no but I'm wondering if anyone else has any thoughts or experience.
this response is for Christopher: After my 2nd bout with ovarian cancer I felt I had to do more to help myself. I read alot about fighting cancer with nutrition I found a book that talk about different holistic treatments & found a wellness doctor that administered vit c intervenes. He told me patients with my cancer were showing to be helpful..so with different supplements & diet of fish,veggies, salads,legumes, NO or Low sugar NO red meat.& no dairy I am cancer free for 2 yrs now.. total of 5yrs in May .. My oncologist has the same response when I tell him, he only says if you feel good just keep doing what you are doing...I will b/c I never felt so good!
Daphne - sorry to hear about your troubles after radiation to your pelvis. I have a few bouts of diarrhea each day, as you described. I am on a heavy dose of medication for carcinoid tumors - but I find that using imodium (one or two after an episode) can help stop repeated episodes. It is hard to remain hydrated, and pedialyte (from the drug store - over the counter ) really helps when I feel weak. For the anus pain using wipes with witch hazel,followed by a dab of vaseline works well. Good luck.
This response is for Steve. Many times, chemotherapy medications are given along with dexamethasone, a steroid. The personality change and aggressive behaviors may be a side effect of the steroid. The connection seems possible.
Unfortunately I developed side effects from radiation to my pelvic region and have frequent bowel movements over the months which is hurting my anus area. What a pain. What kind of diet should I take: the more vegetables and fruits and fibre, the worse it becomes? or do I need more fibre to bind the stools together which are now coming out either mushy, in pieces, tiny bits and only occassionally big chunks
My wife has pancreatic cancer and to me it seems that her personality changes when she gets her treatments. She seems to be almost verbably aggressive, certainly not her normal happy self. She is taking Gemzar. is this normal?
I have thymus cancer is there anyone else that has this "rare" cancer and what did you do. I had surgery, then Dr. told me to go to hospice to die. I am still alive & another Dr. is trying to treat me, fighting with the insurance, he can't give me what he thinks will work he has to give me what the insurance says they will pay for. Can you tell me any of your experiences?
I too had a negative response from Mayo Doctors about diet and life style after my initial cancer treatment. It was obvious to me that any of the possible positive impact of diet and/or life style, haven't reached down to the front line doctors and they certainly didn't encourage there use.
Many of us could not attend this conference, but were blessed to have Dr. Rafael Fonseca lead a summary discussion at the Wellness Center the following Thursday. He was able to answer questions in an open forum which made many patients more comfortable with their protocols. The information he provided gave me more hope as so much has changed for the better for Multiple Myeloma patients since I was diagnosed in 2009.
I found that before, during and after chemo treatment for CLL, I received no advice regarding diet, supplements, or exercise. When I wanted to discuss holistic support with my team, I was advised that it wasn't necessary. I disregarded thier advice and searched for information from other sources, applied what I learned and have been in full remission for more than one year. My team is amazed that I'm doing better than average in my recovery but have not bothered to ask why. Due to their inital negative response, I have not attempted to discuss my holistic efforts. I hope to continue in remission for a long time.
Thank you for posting these highlights. I am prining a copy and putting in my oncologist folder for future discussion. I think the concept of genes and indiviual therapy is a must when treating cancer. Dr. Burzynski has been battling the FDA with his treatment regarding genes. Let's hope we really get some good cures and not more expensive toxic drug therapy to treat late stage cancer.
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