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Fri, Sep 6 9:53am · Palliative Care in Cancer: Managing Symptoms

Hi @colleenyoung, Thank you for the info. I am now aware Mayo does have it but has never been discussed. I don't see a doctor for 3 months, just a nurse who might be able to point me in the right direction. My mayo has no support groups for lung cancer and I don't need drugs so not sure what else they might offer. As I had my treatment yesterday, I will ask the nurse in 3 weeks when I go back.

Wed, Sep 4 12:45pm · Palliative Care in Cancer: Managing Symptoms

@cwm1 – So far the hurricane has been uneventful…torrential rains and wind gusts but thankfully no flooding as of now, which is high tide. Yes, Mayo does have quite a few trials going on as my oncologist is leading the lung one. That is why I no longer get to see her but once every 3 months. I was offered to try for that when I showed progression back in April but I believe it was a chemo/immunotherapy combo which I do not want to do until I exhaust all other options. Had Gamma Knife radiation end of May so the brain lesions are gone. Just watching the new adrenal gland lesion and hilar node as well as a new one in my thyroid gland. I may decide to radiate those as well although my oncologist does not think I should at this time as I have no pain with them.

Wed, Sep 4 9:46am · Palliative Care in Cancer: Managing Symptoms

@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials…..they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower….have my labs and infusion at 8:45!!

Tue, Sep 3 11:05am · Palliative Care in Cancer: Managing Symptoms

I have been with Mayo in Florida for 5 years with stage iv and have never been offered palliative care….amazing.

Sat, Aug 17 7:51pm · Exercise during chemo in Cancer: Managing Symptoms

janlanderz – Thank you for your wishes! You have reached out for help and you've got this. Taking yoga, doing tai chi and some strength training in between some walking will keep you strong not just physically but mentally as well. I work out at a gym 3-4 times a week, do yoga and walk about 3 miles a day with my dog. If it wasn't for my dog, I am not sure I would still be here!

Sat, Aug 17 2:10pm · Exercise during chemo in Cancer: Managing Symptoms

I was diagnosed August 2014 with a tumor in my lower right lung which had metastasized to my vertebrae, 2 ribs and they thought (until a biopsy proved them wrong) my liver. So, it has been quite a roller coaster ride for 5 years!! I am doing quite well although just recently the little monster decided to appear in my brain with 6 spots. Had Gamma Knife (a type of brain radiation) in May and just had my brain mri re-check last week. All good! Now I have a new lesion in my adrenal gland and hilum…..more radiation in my future!
Another popular site you might want to visit is Inspire.com. It is very active and there are hundreds of threads and links to anything you want to find.

Sat, Aug 17 1:59pm · Exercise during chemo in Cancer: Managing Symptoms

janlanderz – Have you discussed exercise with your doctor? Are you on blood thinners? Discussing and getting the approval of the doctor would be of upmost importance. This could probably be done via a phone call (or a message on a portal is your center has that). Once cleared, I would start off slowly as geoger mentioned. Walking is a wonderful way to get exercise and get out of the house…total mood changer. While riding a stationary bike and using a rowing machine (or cables, bands, etc.) are terrific and some of my favorites, you are skipping many parts of your body that need strengthening. Perhaps a trainer at the gym could get you comfortable with a routine to start with. I can understand your fear of riding a bike outdoors if you are on blood thinners. Exercise will help the depression most of us are familiar with having this diagnosis. The more active you are the less time our brains dwell on the cancer. Please don't hesitate to send me a personal message if more guidance is needed. Just click on my name!

Sat, Aug 17 9:05am · Exercise during chemo in Cancer: Managing Symptoms

Janlanderz – What type of exercise did you do before your diagnosis? As a retired personal trainer and a stage iv nsclc patient, that would be my first question to you!