It's a great place, and a hard walk!! I think it's harder coming down than up, my legs were burning!
Lillylung wrote on CAS1's wall
Hi CAS1, Thanks for the info on the smart patient site. I joined and they are supposed to send me an e-mail when approved. Anxious to talk to other PD1 patients. My last blood work and CT scan showed liver enzymes/levels too high and will have to wait out the two week schedule to see if I can have infusion next time. CT showed nodes either stable or very slightly enlarged ( Oncologist says could be somewhat enlarged due to the effects of immune system fighting the cancer) My thyroid is fried so I have been taking medication to try and get the levels at least up to somewhat normal. They've had to up it 3 times. That is a very minor issue and once levels are stable I will just take the pills. Hoping this will settle down and I will be on a routine schedule and HEALTHY!
Thanks for keeping up with me. I have gotten so much information from your posts.
Of course Lilly,
We LC folks have got to stick together. I have to say from what i have read about concerning possible side effects from PDl-1 or even PD_l you seem to be in good shape. The liver enzymes go up and down very easily. please make sure you are drinking lots of water. I mean 8-10 bottles per day. This plays a big role in the liver issue.
i have just read an article about the results of a clinical trial on vitamin e and a. We of course know the importance of vitamin D with lung Cancer. Please make sure you are taking an adequate multivitamin some people get pre natals from their onc's and swear by it. I know i love those B-12 shots they used to give with chemo. Of course check with Onc.
I am so gald you get value from my posts. But there is far more interesting data out there that i don't post. Please set up a google email address then subscribe to google alerts and use a few items like NSCLC..and Andenocarcinoma as an example PD-1 for Lung cancer. You will get articles in your email that you could never find otherwise. i send this data to my Dr's. and i help them help me. There is not one Dr. out there that can stay up to date on everything.
Reading this material gives me a great deal of hope. We are at a breakthrough stage for Lung cancer. But of course its never fast enough for me or any of us. But this Pd therapy is showing some great success and for some peopel for many many years.
i have read many white papers saying we shoudl not use size of tumor as the predictor of treatment success as they enlarge from immune system as you say but also shrinkage can take many many months to show up.
My next scan is Oct. 18th. I will be 14 months out since surgery and 19 months out since Dx. I won't lie. I worry everyday about a recurrance. more so as to what my family will go through not so much me or treatment worries. but everydfay we are having more and more breakthroughs.
Lilly are you comfortable telling me your story?
All the best,
Yes CAS, I am very comfortable sharing my story with you. I feel like you've become a friend.
I know how you feel about upcoming scans. We call it scanxiety. I don't have one for another couple of months. I have my next infusion (maybe) September 12th.
I get a B-12 injection every other treatment ( once a month). I have pernicious anemia and had to go to Primary for the injections once a month anyway, Dr P. (Oncologist) agreed to give them to me during treatment. Helps to reduce the constant and revolving Doctor appointments.
I will set up a Google account as you suggest. I'm still waiting to hear from "Smart Patients" .
Thanks for all the info. and best of luck to you too.
I'll let you know how things are going. Don't know if you're in a group but if you want to talk about anything I'm here.
Hi Lilly, Thanks I feel the same way. Journey the member on this group is like us too.
I wonder if Smart P is having hacker trouble as I didn't think it took this long. i will send a message to Robin M who is one of the moderators.
My Dr. wanted me to have follow up cT scans every three months but the insurance would not pay for one in August. They said 4 to 6 months only. I will fight them on this because i just got an article from google on how insurance companies are withholding coverage for surgery for early stage LC and their general witholding for treatments are effecting LC outcomes.
I think you will be amazed at the infromation you will get from these google alerts. I just did one for PDL-1 for LC and got the article i posted right away. I have read that they are also giving PD's with chemo and radiation in a few patients which could lead us to yet another great combo with long term effectivness. I have another article there are 10 Pd's in clinical trials for LC all are different and all are racing to market. Good bring them on.
I know you are also IIIB and had surgery. I just now have given in to taking spiriva and albuterol because with this hot humid weather I was having a very hard time breating. I had the upper lobe left removed and 18 Lymph nodes in the center of my chest removed. My right lung took a serious hit from the radiation in additon to loosing that top left portion.
I had one 2 cm tumor in that left lung and one lymph node that originally showed cancer. After treatment everything was dead anyway but we only knew this after surgery. I sometimes wonder if I should have had the surgery but then other times i think it was the right decision. But my lungs are comprimized a great deal. No doubt about it.
My Onc is hopeful but my Radiation Onc. is always so grim.
May I ask what your original Dx was like? Are you feeling the loss of lung from your surgery?
I have a huge gash in my neck just from the original Lymph node biopsiy
I go for long periods of getting in shape and then i drop off and I feel it right away. Just now getting back on track again. And its starting to cool off and that helps my breating a great deal.
Lillylung wrote on CAS1's wall
CAS1. Thank you for your input. I need to research some of the information from Craig, I don't understand some of the anagrams! I haven't had time to research the Inspire site, will keep a healthful distance from some responses. I asked the Nurse trial coordinator about getting together with other trial patients, she indicated they could not give out information on patients, which I certainly understand. I did tell her if anyone else was interested in connecting that I would be agreeable to her giving my information to them.
Thanks again for all the help and information you've given.
Craig here is a wonderful resource and I invited him to join this forum. I would not suggest Inspire as I found it filled with wrong and dangerous medical advise. For instance one women has for years discouraged 100's of people from seeking surgery for LC making commnets that surgeons only want to cut. And, it won't help you anyway..This forum is totally diffrent for the better.
Low and behold she has reccurance and is tripping over helrself to get into a surgeon. Well what about the 100's of people she discouraged? What about them? Funny no mention of that on the forum.
If I were you I would ask your Dr's for people currently being treated with the PDL-1 therapy.
Or even the American Cancer Society forum is a better choice.
A brand new report finds that the rate of people dying of cancer in the United States is continuing its downhill trend. Some say the result is a payoff for the country's investment into medical science. Others remain skeptical. An installment loan can help you pay for your medical bills.
When the final info comes to my doctor, I will be on a Nivolumab clinical trial. I may get it or the standard of care. My other two possibilities, require a different chemo. I am anxious to start. As far as the other portion of what was stated, the saying "People think they are generous when they give away free advice." is applicable. I will share how something makes me feel or the success of a treatment, but it would be irresponsible for me to give advice. I was a high school English teacher and football coach for 40 years. I am not qualified to suggest medical treatment. I could proofread someone's essay though.