Georgia

Hi, DFK, Your posts are so informative, I really learn a lot. You followed up asking about my husband's chest skin sensitivity; he said it's about the same but he has found the Excedrin ES seems to take care of it and rates the pain as a "2", so the doctor has not recommended anything further. However, I am looking into a topical "recipe" to try which he says is OK. I have been the record keeper and researcher since we started this journey. He is the exact opposite, oh well. I read some of your comments from the post on Weds. about not disclosing your diagnosis to anyone except your husband and 2 sons. My husband basically felt the same (he did tell a best friend couple we've known for about 30 years). This was his decision to keep it private and I agreed. However, last year my younger sister and her adopted teenage autistic son were planning a visit (from Ariz. to Wa. State) at about the same time he would be having the radiation/chemo 5 days a week for 6 weeks. I felt we had to inform her as we could not manage a visit and continue with travel to clinic for 6 weeks (200 miles round trip to clinic in summer heat, etc.). He said OK, so I did inform her and another sister I'm also in touch with in Calif. with the understanding this is to remain private and should not be shared with anyone in family or anyone else for that matter and that was my husband's desire and choice. My sister in Az is not religious and neither are we although we do believe in God. She is a very spiritual person and posts lots of "uplifting" stuff on FB - some I agree with, some I don't but usually do not comment. I feel she also posts stuff that I feel is hypocritical since she does not practice it - again, I do not relay that at all although I may vent to my husband, lol. After she learned his diagnosis, she started sending emails and/or postings on FB about "end of life" choices, spiritual blessings, etc. It became too much for us very quickly, and I sent some very strong emails telling her in all caps to STOP this stuff right now - not helpful, was intrusive, and we don't want it. I respect her beliefs even if I'm convinced they would not be my choice. She finally got the message and stopped it (that was approx. June last year). Then over the past 3-4 months, she has posted 3 articles, etc. on my husband's FB page - I do not have a FB page but can access his plus Messenger, and don't usually look at it regularly. However, he informs me "well, she's done it again." First he said she posted an article about "Surviving Cancer" and stated, "Foster, you should read this." He responded to her privately via Messenger (assume it was "stop, this is private, etc.). Then a month or two later, she posts an article about "Chemobrain" and says "Did you have this?" My response was, OMG, what is wrong with that woman? Again, he responded via Messenger. Personally, I had never heard of Chemobrain and his doctor, nurse, etc. had never mentioned it nor was it in anything I read about his treatment. I researched it and found it was primarily a possible side effect of breast cancer patients. The 3rd posting was recently and was about Alex Trebek of Jeopardy TV program announcing he had to have a 2nd round of treatment for pancreatic cancer (we saw his 1st announcement in March last year) - she implied since Trebek was open about diagnosis, why couldn't he do the same? This was when I said "Enough is enough"; this is not an email matter and I phoned her. Basically, I said "You don't have the right to break Foster's privacy and my confidence. I regret sharing this and I will never share anything with you again. I have to limit our communications for a while." She apologized, etc. She is not stupid and I still can't understand why she would do such a thing; she did deny posting the last item about Trebek in a public way on FB - however, Foster said it did appear on his FB page for anyone to see. It's late at night which is when I think more rationally - please forgive this long diatribe - just had to vent I guess. Always enjoy the jokes here, wish I had a clever one to add ...... Have some more progress to report and some questions but will do that another night, this is long enough. Thanks again to everyone who shares their experience and cares ... Best Wishes to all, Georgia

Kate, I'm a "newbie" so keep that in mind, lol. I read most of the postings re Durvalumab and did see one that had a resource to find a clinical trial. This may be 2nd guessing your onc but I don't believe any one doc can know about everything either. Since you mentioned clinical trials, on this site, I found clinical trial resources Including a Clinical Trial Navigator if you want to pursue that. The link is below. https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials My husband has stage 3B lung cancer, had chemo/radiation last year and has Durvalumab now #11 so far. Has had some side effects but progress is good so far. We want to be optimistic. Everyone here has been so helpful to us, I just wanted to chime in. Please keep posting your updates - we care and want to help if possible Georgia

I (Georgia) read the following posted by Eagle 13 on 12-9-18, but don't know if any of it would be helpful; I (Eagle 13) was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion. I am now Stage 4. Biomarker testing was done on the fluid that was pulled. I sought a second opinion with the agreement of my Onc. My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid. Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy. The targeted therapy is 1 pill I take once a day, every day at the same time. The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso. I am a non-smoker. EGFR is typical for non-smokers who get non small cell lung cancer. Here is the explanation of the biomarkers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/

DKF, Congratulations - what good news, so happy for you. Thanks also for sharing all the details - it is so helpful for me to pass on to my husband - had #11 recently and most side effects seem to have resolved for the time being. I have learned so much on this forum and appreciate everyone's comments and experience so much. Again, yea ! Georgia

Hello, again, This may be a new topic but my husband Foster asked me to post about his experience with skin sensitivity especially on his chest. Clothing exacerbates the sensitivity. One nipple is painful and he has put some gauze over it which helps a lot. He mentioned this to the ARNP he saw today, and she felt it may be a result of radiation - however, that ended on July 29th last year. He started immunotherapy Durvalumab on Sept. 17th and just finished #11. Has anyone else experienced this kind of skin sensitivity and was it due to the immunotherapy, radiation, or something else? Thanks for your help. Georgia

DFK, Thanks for your comments; I did read them right away (& passed on to husband) but am just now getting back to reply but I do appreciate them. No his skin on back was only slightly light red after radiation, seemed to be OK with some cream on it. You made a good point about the Gabapentin - had not thought about a different dose, etc. He did ask the doctor at next appt but she said if the Excedrin (acetaminophen, caffeine, aspirin, 565 mg) was working to just stick with that. He has not yet tried the heating pad we have - will bring it up again. More recently, his nipple was very sensitive, and he put a gauze pad over it which helped a lot. Tomm, Thanks also for your comments. I had not heard of a naturopathic oncologist but it sounds like a good idea. I did find one only in Spokane where he goes for treatment. Unfortunately, our insurance is a Medicare Advantage Plan and there are no naturopathic doctors at all in their network; will phone but believe from the web site that there is no coverage at all if doc is out-of-network. We cannot afford to private pay. The whole plant CBD tincture sounds promising and is legal in Wa state. Believe he wants to stick to trying only one thing at a time so will keep that as an option. Silly Cat, Thanks much. Do you know what dosage Gabapentin you took only at night? Will see if he agrees it might be worth another try. As usual, your experience is so valuable to other patients - thanks for sharing. He will have Durvalumab #10 next week and is also scheduled for a CT scan - his doctor left clinic in Dec. and he now has a young female doctor he has only seen twice I believe (also sees ARNP, backup for doc); from earlier scans, the tumor has shrunk a lot and the lymph node is also much smaller, which is great news; look forward to further reduction hopefully. Just got a flu shot myself recently but cannot persuade him to get one or a pneumonia shot - both are covered by ins. Will ask doc about it at next appt if he doesn't, oh well, something to argue about I guess, lol. I don't want to "micro-manage" but he is a "hunt and peck" typist so would never post on a forum and usually dictates what he wants help with on the forum so I can pass it on.

NEED HELP RE SIDE EFFECTS OF DURVALUMAB Hello, I last posted info in August last year about my husband Foster (70 yrs) who has stage IIIB lung cancer in the right side upper lobe diagnosed in April, 2019. He began radiation and chemotherapy on June 17, 2019 and had 30 sessions of radiation and 6 of chemo. He was not able to start Durvalumab immuno until Sept 17 (had severe esophagitis and lost about 35 lbs, had no strength or stamina). He has had 9 infusions (every 2 weeks) so far (one was cancelled in Nov. after CT scan showed lung inflammation & infection). Current side effects are: right front rib cage - skin is tender almost like it's bruised but nothing visible; right nipple is extremely tender; what feels like bee stings on the base of his shoulder blade on the back right side and occasionally under the right arm pit, again there are no visible signs. Front chest area over ribcage on right feels uncomfortable and tender, wearing a shirt aggravates the uncomfortable feeling, it feels like chafing against raw skin, again nothing visible. This is a consistent, daily uncomfortable feeling. Extra strength Excedrin (or equiv.) seems to help. At his last appt on Jan 22nd with an ARNP, he described these side effects and was prescribed Gabapentin which he was told can be used for nerve pain. He took it only at bedtime for 4 nights and decided to discontinue it. After taking med, during the day he felt like a zombie and not fully awake. The side effects seem to be worse now. Would love to hear from anyone who has had similar side effects and find out what helped you. Have been reading through the Durvalumab forum and find a lot of useful info. Always look forward to sharing what helps and what does not. Thanks much. Georgia