Radiation Side Effects - husband suffering

[Georgia]

Hello,  my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid.

Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next.  He is also irritable due to the pain which is understandable.

Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.

[LouT]

Georgia,

I'm so very sorry to hear about your husband and his difficult time with the treatments.  I had surgery for my LC so I cannot comment on the symptoms he is experiencing, but I'm sure you'll hear from others who can.  I just wanted to welcome you to the forum and tell you that you'll find a kind and supportive group here and you and your husband will be in my prayers.

Lou

[Tom Galli]

Georgia,

I’ve not had your husband’s symptoms but did have an uncooperative epiglottis as a result of my treatment for about 6 weeks. 

My problem was aspiration of food and liquid so I was declared NPO and a feeding tube was installed. There was no medical treatment for my problem; a speech pathologist “prescribed” guttural sounds and my problem took about 3 weeks to resolve. 

Have you tried Chloraseptic throat spray and Halls citrus drops? My surgeon would slip me a drop when the speech pathologist wasn’t looking. 

Welcome here. I do hope his situation resolves quickly. 

Stay the course. 

Tom

[PaulaC]

Georgia, I went through the exact thing your husband is experiencing. The radiologist referred me to a doctor that did the procedure you talked about with the balloon. I ended up having it done twice to stretch my esophagus. I lost almost 40 pounds before I got it figured out. 

Hopefully he can talk to the radiologist or oncologist about seeing a specialist. 

[DFK]

Georgia,

I am sorry to read that your husband is experiencing weight loss, esophagitis and dysphasia. If you can schedule the esophageal dilitation with balloon soon, that would be great. But if not, would your husband reconsider a feeding tube to get the much needed nutrition his body requires for healing and getting his strength back? I don't know how much weight your husband has lost but I know my oncologist told me from the get go that a 10% weight loss from chemo or radiation would require the insertion of a feeding tube. Anymore weight loss than 10% puts an added strain on his body.....I'm sure you know that already. My prayers are with you and your husband. DFK

[Tomm]

Hi Georgia ..  really sorry you and you husband are in this situation but you are in the right place to get advise from others that are there too. I had radiation near my throat and I used Manuka honey and had no problems, my Onc was surprised. He may like the taste of Honey.  Do a search for more information on this and it may help... I hope.

Manuka honey may prevent or reduce esophagitis-related pain caused by chemotherapy and radiation therapy. It is not yet known whether Manuka honey is more effective than standard care in preventing pain.    or any honey may help.

Keep asking and someone may have an answer here.. Listen to what Tom Galli has to say, he has great knowledge from experience 

[Georgia]

Thank you all so much for the warm welcome.  It is so helpful just to know that we are not alone.  To answer DFK, he has lost 30 lbs. so far. Tomm, thanks for the Manuka honey suggestion. He has tried honey but not daily and not Manuka honey. I read about it on line tonight & it sounds promising. I discussed it with my husband and will try to find some tomorrow - it can be ordered if I can't find it locally. We live in a small rural area but there is one health food store here that may have it.

Paula C and DFK, thanks for your comments about esophageal dilation with balloon - very helpful - will consider this soon. The doctor did mention a feeding tube at one point but my husband rejected that. My fear is that malnutrition is contributing to his fatigue, no stamina, weakness, etc. Also, I'm sure I'm gaining the weight he's lost, lol. We bought the Walmart version of Ensure as recommended by doctor but he says it's too thick, he can't drink it. I cut it with water about 1/3 generic Ensure to  2/3 water but that didn't work either. Actually, the full strength stuff tastes good to me but I don't need additional calories, lol.

Tom Galli, yes he has tried the Chloraseptic throat spray; he doesn't like lozenges but recently found that sucking on hard candy allowed him to swallow water at the same time instead of just sipping it, so he has been able to drink more water. He already had 2 recent sessions of IV fluids for dehydration.

We will probably talk to the radiology oncologist about the esophageal dilation; his chemo. oncologist seems to be burned out frankly and not a good fit I think (no real concern I can discern anyway). Will post an update when we're further along with this.  Thanks again - really appreciate all of you.

[Tomm]

Georgia ..  there are manuka throat lozenges too, if he likes lozenges this may help

[Georgia]

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.

 

[Laurel]

Prevention Oncology Mouth Rinse that I found on Amazon.com helped ease the throat pain.  Within a week of starting radiation, my throat felt scarred and painful.  I tried the "miracle mouthwash" and so much more.  This is all that helped me.

Within a few days after the radiation was taken off my throat area, I felt relief and healing.  My primary doctor and radiologist had ideas of what to do in a few months if it didn't heal.

[DFK]

With proper nutrition and hydration via his feeding tube, his much needed strength and health will come back. His body has been assaulted and he needs to be strong to go forward with his immunotherapy treatments. Hang in there Georgia, your husband needs your strength and common sense to get him thru this rough patch. My prayers are with you and your husband,

Take Care, with gratitude and blessings, DFK

[Brenda F]

On 8/5/2019 at 12:36 AM, Georgia said:

Hello,  my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid.

Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next.  He is also irritable due to the pain which is understandable.

Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.

Georgia, my hubby has stage III-C non small cell (inoperable) LUNG CANCER.

He too was doing 40 radiation treatments and after 4 weeks 20 treatments his throat closed as well. He can swallow about 15 cc.s Of water. He couldn't talk and I took him to the ER and I wanted them to stretch his esophagus as well. The gastrointestinal Dr said she would put a feeding tube in if possible. We had to wait a few days because he was so weak and it caused his immune system to go really low and everybody had to wear masks and wash their hands to come in his room. When she was finally able to try to put in the tube she thought she might have to call in a different surgeon to go into the gut. Well she was able to get the tube in and she said his throat was really badly burnt. We stopped radiation but finished CHEMOTHERAPY this past Monday. I feed him thru that feeding tube and he still can't swallow hardly at all. Throat pain and chest pain and now his lower abdomen is hurting terribly. He has a opioid patch and an opioid liquid for pain plus the magic mouthwash and he also has thrush really bad. We go Fridays to see what's next. We were told immunotherapy was next. I want a PET SCAN to see if any of this has done anything to get rid of the CANCER.

My hubby has a large mass on the upper right lung  and 5 lymph nodes that are malignant as well. I am also a heavy but can't remember how to get to my stuff. 

On 8/5/2019 at 12:36 AM, Georgia said:

Hello,  my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid.

Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next.  He is also irritable due to the pain which is understandable.

Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.

 

[Brenda F]

I hope Georgia gets my reply to her note.

[Brenda F]

21 minutes ago, Brenda F said:

I hope Georgia gets my reply to her note.

Oh my goodness GEORGIA I hope you get my response to your note. My husband has stage III-C non small cell (inoperable) LUNG cancer. He has a large mass on the upper right lung and 5 lymph nodes that are malignant as well. He was doing 8 weeks of radiation as well. After 20 treatments 4 weeks his throat started shutting as well. He couldn't hardly whisper. I called the Dr on call at the oncology place and was told to take him to the closest ER and I wanted them to scope him and stretch his esophagus as well. Well they couldn't do that but put him in the hospital and a gastroenterologist came in and said when he was strong enough she would attempt a feeding tube. His immune system was so low they had to wait and get him stronger. She was able to get the tube in but told me his esophagus was badly burnt. We were also told a couple of weeks and he would be able to swallow. Well he can't yet,and it's been over 2 weeks. But he gets nourishment thru the G-Tube for now. We stopped radiation. He figured he would die if he did any more. CANCER IS HORRIBLE. I am so sorry you have to go thru this as well. My hubby is 64 as of a month ago.

Feel free to call on me anytime. I'm on Facebook too. Brenda Mathis

My E-mail is nursebren59@yahoo.com

 

[Brenda F]

I would love to hear from anyone who has these problems. My hubby had lost over 35 lbs thru this so far. His muscle mass is going down so fast. He is on so much medicine for the fungal infection which doesn't seem to be doing much good. I am a retired nurse myself and never dealt with CANCER other than my mother's breast CANCER at age 80. She had one of the worst kinds and the Dr said he could give her 10 years if she did chemo and rad and she said no. She is 97  and CANCER FREE. GOD is all I can say.

[Georgia]

19 hours ago, Brenda F said:

Oh my goodness GEORGIA I hope you get my response to your note. My husband has stage III-C non small cell (inoperable) LUNG cancer. He has a large mass on the upper right lung and 5 lymph nodes that are malignant as well. He was doing 8 weeks of radiation as well. After 20 treatments 4 weeks his throat started shutting as well. He couldn't hardly whisper. I called the Dr on call at the oncology place and was told to take him to the closest ER and I wanted them to scope him and stretch his esophagus as well. Well they couldn't do that but put him in the hospital and a gastroenterologist came in and said when he was strong enough she would attempt a feeding tube. His immune system was so low they had to wait and get him stronger. She was able to get the tube in but told me his esophagus was badly burnt. We were also told a couple of weeks and he would be able to swallow. Well he can't yet,and it's been over 2 weeks. But he gets nourishment thru the G-Tube for now. We stopped radiation. He figured he would die if he did any more. CANCER IS HORRIBLE. I am so sorry you have to go thru this as well. My hubby is 64 as of a month ago.

Feel free to call on me anytime. I'm on Facebook too. Brenda Mathis

My E-mail is nursebren59@yahoo.com

 

 

19 hours ago, Brenda F said:

Oh my goodness GEORGIA I hope you get my response to your note. My husband has stage III-C non small cell (inoperable) LUNG cancer. He has a large mass on the upper right lung and 5 lymph nodes that are malignant as well. He was doing 8 weeks of radiation as well. After 20 treatments 4 weeks his throat started shutting as well. He couldn't hardly whisper. I called the Dr on call at the oncology place and was told to take him to the closest ER and I wanted them to scope him and stretch his esophagus as well. Well they couldn't do that but put him in the hospital and a gastroenterologist came in and said when he was strong enough she would attempt a feeding tube. His immune system was so low they had to wait and get him stronger. She was able to get the tube in but told me his esophagus was badly burnt. We were also told a couple of weeks and he would be able to swallow. Well he can't yet,and it's been over 2 weeks. But he gets nourishment thru the G-Tube for now. We stopped radiation. He figured he would die if he did any more. CANCER IS HORRIBLE. I am so sorry you have to go thru this as well. My hubby is 64 as of a month ago.

Feel free to call on me anytime. I'm on Facebook too. Brenda Mathis

My E-mail is nursebren59@yahoo.com

 

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

[Brenda F]

Georgia, I was so glad to hear from you. Yes my husband has thrush very bad. We used Nystatin first and some in IV while in hospital and then two other meds at home and still using them. His thrush is starting to get better. Today I put a small piece of watermelon in his mouth to see if he could suck in the flavor and he choked and gagged for quite awhile. We go see his oncologist in the morning. He told us we had to wait 4 weeks after the last radiation treatment done before a PET SCAN could be done. Well I want one to see if any of this has shrunk any of the CANCER.

I am glad your husband is getting nourishment now. I would not want a nasogastric feeding tube either. I wish for their throats to get better so they can eat and not have to depend on the tubes. It's been three weeks ago today that he stopped radiation.

You were talking about the yard. I know this one quite well. I paid to have ours mowed yesterday. We only have a half acre close to the lake. Not on the lake but you can see it from our yard. My husband can't do anything but sit or lay down. He will sit on the porch with the dog and SMOKE. Yes he still SMOKES. I have never smoked so I don't know that addiction. I pray for him to stop.

I will come Dr for now. Look forward to hearing from you. Our PRAYERS are with you both.

[Georgia]

1 hour ago, Brenda F said:

Georgia, I was so glad to hear from you. Yes my husband has thrush very bad. We used Nystatin first and some in IV while in hospital and then two other meds at home and still using them. His thrush is starting to get better. Today I put a small piece of watermelon in his mouth to see if he could suck in the flavor and he choked and gagged for quite awhile. We go see his oncologist in the morning. He told us we had to wait 4 weeks after the last radiation treatment done before a PET SCAN could be done. Well I want one to see if any of this has shrunk any of the CANCER.

I am glad your husband is getting nourishment now. I would not want a nasogastric feeding tube either. I wish for their throats to get better so they can eat and not have to depend on the tubes. It's been three weeks ago today that he stopped radiation.

You were talking about the yard. I know this one quite well. I paid to have ours mowed yesterday. We only have a half acre close to the lake. Not on the lake but you can see it from our yard. My husband can't do anything but sit or lay down. He will sit on the porch with the dog and SMOKE. Yes he still SMOKES. I have never smoked so I don't know that addiction. I pray for him to stop.

I will come Dr for now. Look forward to hearing from you. Our PRAYERS are with you both.

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

[RonH]

By all means ask the Radiation Onc about the scans they do during the course of the radiation treatments. As Georgia noted, they are not as definitive as CT or PET scans, but the trained eye of an RAD Onc can tell the direction things are heading. Last year about this time I had started the Concurrent ChemoRadation treatments for Stage 3A NSCLC. The Chemo was once a week (on a Wednesday) and the Radiation every weekday. About once a week, the Radiation Techs would announce it was a "picture day" and that they would be scanning my lungs/chest right after the radiation treatment. The same machine is used, so your husband may not even know it is being done. Then the Radiation Onc would normally say that it appears that the radiation was having a positive effect, or that there was no change over the week, but she always noted that they would have to wait for a CT to do any diagnostic level reviews.

[Georgia]

On ‎8‎/‎15‎/‎2019 at 10:17 PM, Brenda F said:

Georgia, I was so glad to hear from you. Yes my husband has thrush very bad. We used Nystatin first and some in IV while in hospital and then two other meds at home and still using them. His thrush is starting to get better. Today I put a small piece of watermelon in his mouth to see if he could suck in the flavor and he choked and gagged for quite awhile. We go see his oncologist in the morning. He told us we had to wait 4 weeks after the last radiation treatment done before a PET SCAN could be done. Well I want one to see if any of this has shrunk any of the CANCER.

I am glad your husband is getting nourishment now. I would not want a nasogastric feeding tube either. I wish for their throats to get better so they can eat and not have to depend on the tubes. It's been three weeks ago today that he stopped radiation.

You were talking about the yard. I know this one quite well. I paid to have ours mowed yesterday. We only have a half acre close to the lake. Not on the lake but you can see it from our yard. My husband can't do anything but sit or lay down. He will sit on the porch with the dog and SMOKE. Yes he still SMOKES. I have never smoked so I don't know that addiction. I pray for him to stop.

I will come Dr for now. Look forward to hearing from you. Our PRAYERS are with you both.

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

[Brenda F]

Georgia 

My husband Jimmy became so ill when we went to see the oncologist friday before last that we had to rush him to the hospital where it was thought he had a blockage in his abdomen. Well a CT Scan was done and the ER Dr came in and said something was very wrong and he was gonna go to ICU and a team of Drs would be called in to see what was going on. One minute later a surgeon came in and said surgery had to be done quickly. This surgeon showed us the CT Scan results and Jimmys liver had lots of air in it and then so did all of his intestines and colon. This surgeon said he thought Jimmys organs were shutting down and that the intestines and liver were neurotic ( dead)

and if so he would just sew him up and that was gonna be the end. We had to choose if we wanted them to do CPR or not. He choose DNR.

THE DR WAS GONNA CALL US EVERY 2HRS OTHERWISE. Well about 1 1/2 hrs later he came out and told me he'd never seen anything like it. He said all of his organs were viable. He was gonna live. I told him GOD HEARD US PRAYING AND TOOK OVER. Jimmy was still very sick ICU for two days then isolation for 5 days. We came home Friday. He will hopefully get his throat stretched in a bit. A swallow test was done and now he can swallow liquids. I have to be sure he gets 2,000 calories a day now. We are supposed to start immunotherapy this coming Friday. A CT- SCAN was done before we left and there was NO CHANGE IN HIS CANCER AND ANOTHER MASS WAS SEEN IN THE BOTTOM OF THE RIGHT LUNG. I will assume we will be told a new stage of this horrible CANCER mess. Jimmy is still very weak.

I am so happy fir your hubby. Keep me informed.

[Georgia]

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

[Brenda F]

On 8/16/2019 at 4:57 AM, RonH said:

By all means ask the Radiation Onc about the scans they do during the course of the radiation treatments. As Georgia noted, they are not as definitive as CT or PET scans, but the trained eye of an RAD Onc can tell the direction things are heading. Last year about this time I had started the Concurrent ChemoRadation treatments for Stage 3A NSCLC. The Chemo was once a week (on a Wednesday) and the Radiation every weekday. About once a week, the Radiation Techs would announce it was a "picture day" and that they would be scanning my lungs/chest right after the radiation treatment. The same machine is used, so your husband may not even know it is being done. Then the Radiation Onc would normally say that it appears that the radiation was having a positive effect, or that there was no change over the week, but she always noted that they would have to wait for a CT to do any diagnostic level reviews.

Ron, No one ever said anything about any CTs or any kind of pics. On Aug 16th we were told My husband was going to most likely due in surgery, found in a DR Scan of abdomen, his liver and intestines and colon had air everywhere and they were neurotic (rotten). The surgeon said he was going to try and save his life but doubted it was gonna happen but he was gonna see if he could take pieces of his intestines out leave the wound open and go in every couple of days and take more. We brought our children in to see him before they rushed him into the operating room. One daughter was in Nebraska and he FaceTime with her. We said our good byes and waited. The surgeon came in and got down in front of me and said I'VE NEVER SEEN ANYTHING LIKE IT. ALL OF YOUR HUSBAND'S ORGANS ARE VIABLE. HE IS STILL ALIVE. PRAISE GOD.

 

[LouT]

Brenda

With this disease any good news is a blessing. My prayers are with you and your family. 

Lou