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1 day ago · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

He is not good about answering questions on line at all. I can ask him questions when I see him and he will answer but does not really "discuss" things. Wakelee is good about answering questions but she is not technically my treating doctor. Makes it more complicated as there is no real treatment for my cancer.

1 day ago · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Hi Merry,
I will check out that link, thank you. I am not having a good week, feeling sicker every day since tgat Infusuon but not sure if it is the cancer, chemo or Keytruda.
No, they did not mention dental care but I try to watch that closely. Due to chronic dry mouth and throat for years. I had $$$$ of dental work last year. Great!! My Oncologist tells me next to nothing.

2 days ago · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

I guess I haven't updated for a while. I have the Large Cell Neuroendocrine Lung Cancer. Had my last Chemo in April, Carbo/Etroposide. PET was stable. Two more treatments were cancelled as my blood work was staying too low. My Onc at Stanford wanted another PET in June and a repeat brain MRI. My local Onc was not going to do one. I had been receiving no treatment. PET showed progression. Brain MRI now shows several spots and whole brain radiation is recommended. I had been started on Abraxane and Keytruda, had one infusion. I am to start the WBR next week then resume the Infusions. Doctor said it woukd be too hard on me to do all at once. There is no treatment protocol for this cancer. Has anyone had WBR and treatments stopped until you were done with radiation? What side effects did you have?

Thu, May 23 1:25pm · When to Stop Seeking out Surgical Drs... in Neuroendocrine Tumors (NETs)

So sorry you are having such difficulty. I am facing issues regarding LCNEC! Aside from that, in my Internet wanderings, I have read about Dr. Eric Liu (?) in Denver, Co. He seems to be regarded highly in this field.

Sat, Apr 20 10:10am · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Hi Merry,
Nice of you to think of me. Admittedly, have only scanned the Boards as little information was being addressed regarding LCNELC. Unfortunately, there are few, good Oncologists hete but I did go to see Dr. Wakelee at Stanford and made an appt to see her again this Monday. She is, technically, not my treating physician, but has been great answering some of my questions. I just finished my 4th round of Chemo (Carbo/Etroposide), followed by 5 days of Granix shots. Treatments seem to be a bit rougher each time. After the first 2 rounds, a PET scan was done which shiwed some shrinkage and no new spots. I have a repeat PET on 4/27. I have been told this Chemo will only help for so long and I started them in January. The Onc here is not good about discussing things so I want to go back to Stanford. Myself, friends and family cannot find many options for treatment. I was told, because she feels I have an underlying immune problem, immunotherapy might be risky for me. Add my age, and I might not qualify for any trials. Truthfully, trying those drugs scares the hell out of me as my body does not to,erate drugs well. Between Chemo treatments, dealing with low WBC and RBC, feeling sick, I think I have maybe one week a month I can try to function. We seldom go anywhere. Just a bit down lately. My cough is wirse and fatigue is catching up with me. Just hoping this Chemo is still holding things at bay. After 3 different diagnosis, I hope they got it right. Thanks again and hope you are doing well!!

Tue, Feb 26 10:45am · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Hi Merry. I did go to the ER for 7 hours! They did a chest X-Ray and chest CT and EKG but could not come up with a good reason for the pain. They tried their best to keep me isolated. Finished my second round of Chemo on Friday and still not feeling well, bloating, nausea, coughing. They started me on the Granix shots. I have gotten two and need 3 more. Not sure if that is adding to the unwell feeling. Doctor has me set up for another PET scan on 3-8. If there is no improvement I am not sure what he will advise. He gave me the impression there is no protocol fir this. I would probably see if I could get in to see Wakelee at Stanford again. I see that MD Anderson has partnered with Scripps down by San Diego. My daughter lives down there but do I want to travel, start all over and inconvenience them? Will wait to see what the PET shows. Thanks for checking on me.

Mon, Feb 18 10:25am · Just started Xanax...anyone have experiences to share? in Depression & Anxiety

I can be anxious too in some situations. Try just taking 1/2 a pill. If that doesn't help cut the edge off in an hour, take the other half. I found that will often work for me. Even though I have taken it fir so long, a whole pill makes me feel kind of sleepy.

Wed, Feb 13 9:37am · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

Merry, that would cost a fortune here and I am not physically up to it. I think I need to call so done this morning or go to ER. My whole chest is hurting. No temp. Need to get dressed. And, more hair falling out.