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    Esophagitis and dysphagia, and fatigue after radiation; how to recover; suggestions we have found or been given do not work

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  1. 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
  2. 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
  3. 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/
  4. 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
  5. 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
  6. Welcome Shane18, Sorry to hear about your father's diagnosis; you've already had some good ideas and suggestions but will add our own as well. My 70-y.o. husband was diagnosed with stage IIIB lung cancer last April. We have a Medicare Advantage Plan which has a cap on out of pocket expenses. However, even with the cap, we could not pay the patient responsibility portion of the bill. After 2 months of tests, prep, chemo and radiation, the amount of bill if you had no insurance was $82K. Our primary provider was a cancer care clinic approx. 100 miles away; we also had services from a local hospital 22 miles away, a Providence Health facility. We were encouraged by Providence Health staff to apply for financial assistance which we did and were granted 100% (no cost plus they even refunded co-pays we had already paid !) - it was time limited and ended on Feb. 7th. Since Providence is a charitable entity run by a religious order, we were so grateful. Providence also suggested we apply for financial aid from our primary provider. In our contact with the cancer care clinic, no one had ever brought up the idea of applying for financial aid. I then inquired and found out there was a Patient Navigator who supplied the application. Much to my surprise, financial aid was also approved at 100% with no time limitation which basically means they are accepting the amount the Medicare Adv. Plan pays as payment in full. Then I applied for financial aid from the business that bills for the Scans which was approved for a 25% reduction in patient portion of bill (again ins. pays most of bill) - we are now paying for these on a monthly payment plan. We can manage to pay the smaller bills for lab tests, etc. as the insurance pays for most of the cost. Hope some of the above may be useful. It is hard enough to deal with a cancer diagnosis as well as the cost involved which can be overwhelming. My husband started treatment 6/17/19 & completed chemo and radiation on 7/29/19; started immunotherapy on 9/17/19 and will continue one treatment every 2 weeks for one year; there are "staging" scans approx. every 3 months during treatment (to determine if tumor, nodule has shrunk with treatment) & monthly lab tests. There will be follow-up scans approx. every 3 months I believe - not sure yet how long that goes on for. If treatment is successful, NED no evidence of disease - that would be the best outcome of course. So far, we've had good news since the lung tumor and lymph node have both shrunk considerably in size. If treatment is not successful, assume there would be a 2nd course - 6 weeks radiation 5 days a week and 1 day a week of chemotherapy followed by immunotherapy every 2 weeks for a year. There is a patient/survivor on this site named Robert Macaulay from BC, Canada, who posts on a regular basis - he could be a good source of info. Since I'm a "newbie" - will try to navigate your post so he sees it - will try but am not good at this , lol. Georgia
  7. 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.
  8. 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
  9. Thanks Tom. Yes I did look through the postings on the Durvalumab forum before my husband started immunotherapy. My husband has had few side effects so far. Even though I was interested to read a posting by a patient who recently finished immunotherapy and had documented his condition and side effects throughout treatment. This was very informative and could be useful as treatment progresses. To me, the patient's perspective is so much more valuable to have than advice from his medical team. I am thankful to have found this site so I can pass on suggestions to my husband.
  10. My husband has stage 3B NSCLC. Surgery was not an option for his tumor. He completed chemotherapy and radiation treatment in August this year. He recently started immunotherapy treatment with Durvalumab. I recently read an article titled "The Cure for Everything" in the Nov. issue of AARP Bulletin and wanted to share the following. It was about Inflammation being linked to nearly every critical disease of aging and included the following statement: "In a recent study, cardiologists in Boston reported on a clinical trial with more than 10,000 patients in 39 countries (mean age: 61) that tested to see if an anti-inflammatory drug could lower rates of heart disease. They discovered that it could. But they also found that the same drug, canakinumab, reduced lung cancer mortality more than 77 percent, and reports of gout and arthritis (conditions linked to inflammation) also fell." The AARP article was very informative in general about how inflammation damages healthy cells and gives details about what causes and reduces inflammation, etc. The statement of reducing mortality more than 77% was astounding to me; however I then found the drug was for adult patients with surgically resected NSCLC. However, I wanted to share this with any patients who fall in this category. When I asked my husband's oncologist about the drug, he was not familiar with it and did a web search, printed out 20 pages of primarily medical jargon type text which he gave to me; it was difficult for a lay person to understand. I also did a search for "canakinumab" on the Lungevity site but found nothing which prompted me to post this. I found (per the Journal of Clinical Oncology 37, No. 15_suppl, published on line May 26, 2019) the drug canakinumab is in clinical trials and recruiting is for patients with surgically resected NSCLC, stages II-IIIA and IIIB (T>5 cm); details of inclusion and exclusion criteria can be found with the following link for Clinical Trial NCT03447769. Perhaps it will be informative and useful for patients who meet their criteria. https://clinicaltrials.gov/ct2/show/record/NCT03447769
  11. Brenda, I was so distressed when I read your latest post. OMG, you and Jimmy have been through quite an ordeal - it must have been awful especially when you were told about organs failing, etc. As you said God must have been looking after both of you during that awful time. How disappointing there was no change in the tumor and another mass is seen in bottom of right lung. I can understand how weak Jimmy must be after being in hospital. I hope he can manage to get more nutrients by tube feeding - it will surely help him to gain weight and get his strength back. I saw a notification about Tom Galli posting a comment on Sat re our posts but cannot find it. He seems so helpful and knowledgeable about everything. I seem to have duplicate postings - will try to find out what I'm doing wrong. Do you have any family members close by for support during this difficult time? Please keep in touch. You're in my thoughts, Georgia
  12. Brenda, hope your husband is improving. It will be 4 weeks on Mon 8/26 since radiation/chemo stopped. He is able to eat much more; on Th 8/22 he had pizza and grapes and would not have been able to eat those 2 weeks earlier. He started Manuka honey (recommended by a patient on this forum) on Aug 8 - a spoonful once or twice a day and also fluconazole (generic for diflucan) for thrush. He also takes an antacid (helps with pain in sternum he says) daily. He was 170 lbs when radiation/chemo started 6/17 and 151 lbs when it ended 7/29; 11 days later he was down to 137 (I was alarmed) due to the esophagitis, not able to eat, could sip only not swallow, etc. and started the tube feeding on 8/9; 3 days later he was up to 146. Sorry, you may not need all that detail (I'm keeping a log to document weight, food intake, nutrient by tube, etc..). I looked at his tongue when he started the thrush med and it looked awful; however, now it is almost cleared up - got a refill on med so expect it will clear up completely. He was up to 5 cartons of nutrient on tube feeding but has now cut back to 1 or 2 cartons plus food by mouth. His weight is still about 146-148; hope he can get back to about 170 lbs before starting immunotherapy (as another patient said "your body has been assaulted and needs time to recover" - I agree completely with that). I feel time plus the Manuka honey to treat the esophagitis has helped considerably since he is able to eat most foods now. He feels his throat/esophagus is at about 50% now. He also says if he does not chew up a large piece of food completely, it will be painful when he tries to swallow. His throat/esophagus must still be constricted so I'm not sure if esophageal dilation is still an option. We have an appt on Mon 8/26 with a nurse practitioner who is filling in for his doctor, so will ask. I did find at the last appt that his stage is 3B. I feel he should not start immunotherapy until his weight is back up to at least 160, and he is healthier and stronger. I found out the med used for immunotherapy is Durvalumab (Imfinzi) which I read about in the immunotherapy section of this site. He is in better spirits now and has been able to do some cleanup work outside, etc. We both enjoy playing Texas Holdem poker on line (play money) at pokerstars.com - if anyone else on this forum also plays, that would be fun to get in the same game - anyway just a thought. Let me know about the next PET scan - has the thrush cleared up yet? Has he been able to eat any liquids or food by mouth? Has he had any weight gain? Hope he regains his energy and strength soon - it may just take time. Do let me know how things are going. Hang in there ! Best Wishes, Georgia
  13. Has the radiation oncologist shown you any scans at all during treatment? We have seen several scans (not as definitive as a CT or PET scan but still readable). Believe it was about a week ago, when he showed us a scan (was taken when radiation was done) that showed the outline of tumor when he started treatment and the outline of tumor at that point in time. It did show a definite reduction which is encouraging - the doctor was happy about that. However, the CT scan on Mon 8/19 should be a higher quality & resolution. My husband told me he quit smoking in Jan 2018 - I was so glad he did not smoke in the house at all and we got rid of all the ashtrays. As you said, it is an addiction and hard to overcome. I found later he was smoking when away from home but he did try the nicotine patches and then nicotine gum. The patches are hard for seniors - thin and frail skin. However, he finally quit for good after the diagnosis in April. I also don't smoke but am addicted to chocolate, powdered doughnuts, snickerdoodle cookies, etc., lol. He has been unable to sleep lately and will take the liquid morphine (4 ml or less) and then gets to sleep. Hope you get some answers tomorrow. Best wishes, Georgia
  14. Brenda, Just saw your post late last night and want to thank you so much for sharing. Hope you saw my update from last Fri 8/9 re feeding tube placed, unable to do esophageal dilation until esophagus is healed more, etc. Almost a week later now and things have improved; he is 6'2" usual weight 175-185; on 8/9 he was 137 lbs; yesterday 8/14 he was 146 lbs. A dietician made a home visit on M, 8/12 & was so helpful; explained the change in taste buds, how they have to be reprogrammed, and will return eventually. (He also has cancer, lymphoma, and had chemotherapy but no radiation [about 1 1/2 years ago]; has checkup scans, and is doing well.) When dietician looked at my husband's throat, he said he had thrush; doctor prescribed fluconazole (8 pills over 6 days) which should clear it up. Not clear if the "fungal infection" you mention is thrush or not. Does your oncology clinic have a dietician you can talk to? Husband's feeding tube is through the nose and he has met the goal of 5 cartons of nutrient (375 cal ea) daily. He does not like the tube in his nose and is motivated to eat whatever he can by mouth. I have kept a log by date with # of cartons of nutrient, food by mouth, and water intake (hydration goal is about 2 qts of water daily including tube flush water). He no longer has throat pain unless he swallows a piece of food that is too large or not chewed up enough. He has been able to eat a boiled or fried egg, thin slices of summer sausage, 3-4 pieces of canned sliced peaches & syrup, small piece of ham, small serving spaghetti meat sauce & pasta. He can also swallow water now instead of sipping through tiny straw. He found if he sucked on a hard candy 1st, left it in his mouth, he could then swallow water - now he no longer sucks on hard candy 1st. We've tried a lot of soft foods but some just don't work for him (pudding, applesauce, fruit smoothies, baby food jars of fruit, vegs, etc.). Last week he could not eat ice cream (too cold, perhaps?) but today he ate an ice cream bar. Sounds like your husband is having a much rougher time, having to have a G-tube through belly instead of nose. My husband finished radiation on 7/29 (had 30 treatments instead of the 40 for your husband). My husband finished 6 chemo treatments. I learned that both chemo and radiation can cause esophagitis but believe the radiation is the more likely cause. He also has a tumor in the upper lobe of the right lung, has inoperable NSCLC, not sure if it's III-A, B, or C - will ask at appt tomorrow. He will have a CT scan on M, 8/19 (3 wks after last radiation) and an appt with both radiation oncologist and chemo oncologist on 9/4. After that appt, we will know more about whether it has spread, any reduction, etc. The clinic we go to is 100 miles away in Spokane. I agree "cancer is horrible" and the side effects are even worse - did not understand this when our journey started. We were also told immunotherapy is next (once every 2 wks for a year) but my husband needs to be healthier before that starts. Also I want to do more research on this site first re immunotherapy and also biomarker testing (discussion for another time), so I have halfway knowledgeable questions to ask. My 1st question would be "what is the med and what are the side effects of the med used for immunotherapy?" Per Tomm's suggestion on this forum (Manuka honey may prevent or reduce esophagitis-related pain), I did buy some Manuka honey (1/2 Tbs twice a day) which my husband started on Th 8/8. Believe it is helping; it is expensive but I found some at Wal-Mart and also at the one health food store in town (live in rural area, county seat about 4-5000). When your husband is able to swallow, it could be helpful. Also the Prevention Oncology Mouth Rinse suggested by Laurel (above) may help once he is able to swallow. It helped her to ease the throat pain after radiation. He is so incredibly fatigued, no stamina, strength, energy, etc. and just hates it. He is used to doing what needs to be done around our property and now he can't. We have a large lawn to mow which he can't mow and he won't let me do it either. It looks like a jungle and is just awful - the "lawn" is actually just native grasses, dandelions, weeds, etc. - rural as I said, we have 10 acres, and no neighbors nearby. Am getting off topic, sorry about that, I didn't mean to write a novel. Not quite sure if I'm replying or posting in the right place. Will email you soon. PLEASE KEEP IN TOUCH - there are no support groups locally. We'll keep fighting. Georgia
  15. Thanks again to everyone who answered my post. DFK: My husband's normal weight is 175-185 lbs. (he is 6'2" & has always been thin); approx. 7/29 it was 151; yesterday 8/8 143; today 8/9 137 ! Tomm: Thanks, I did see some manuka honey lozenges when I searched for the honey; it could be helpful later if he'll try it (not always receptive); bought Manuka honey at Wal-Mart on Th. 8/7 (found it in grocery section!) and he started it same day; still taking it twice a day. At least he likes the taste and didn't reject that. Update: On Th 8/8, we phoned his doctor (radiation oncologist) about a esophageal dilation but doc said his esophagus needs to heal more before that could be done. He did order tube feeding which was done today 8/9; doing it at home. Even though no one has said malnutrition, I feel he must be suffering from that. Started with 3 cans (375 cal./can) of nutrient today and goal is to increase to 5 cans in 3-4 days. There was really no choice about the tube feeding - he looks like a skeleton now. If he still can't swallow water, he also needs to put water into the tube to be fully hydrated. He did manage to swallow about a qt of water today instead of just sipping it through tiny straw, so that's a plus. He also has not mentioned any pain - that's a first, but then again the pain was usually when he tried to eat or drink more than a sip. Also, this is the 1st day in 4-5 weeks that he hasn't taken a nap. However, I need one, lol. I'm a firm believer that doctors can't know everything and are no longer "on a pedestal" and the best advocate needs to do his/her own research plus the most valuable resource is right here - patients who have the valuable experience/knowledge a "newbie" needs. It is so important to find out what questions to ask and why. Again, your help is invaluable ! I just found a separate section in the forum for Radiation and also Immunotherapy (next step coming up), so will be looking at those. Not sure I'm navigating the site as well as I could but will stumble through.
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