Chronic pain after radiation for Stage IV Lung Cancer

@tns- Good morning and welcome to Mayo Clinic Connect. It must be so difficult for you have to watch your wife go through this and it looks like she has been through quite a bit. Stage IV lung cancer is a very advanced cancer and can cause all sorts of side effects including a lot of pain. The treatments that she is receiving cause inflammation and that is a biggie in causing pain. Medicine is a two-edged sword. On one hand, you have the target, lung cancer that causes pain and then side effects from the treatments.

If I were your wife, at this time, I would consider medications that block pain to be her best friend. If present meds aren't relieving her pain then you need to talk with your oncologist for something stronger and help with keeping her food down.

Do you have another doctor who you really trust that might help with this?

@tns - if you haven’t talked to anyone at Mayo’s pain clinic, that might be another option? This option wasn’t mentioned by an onco when I had pain. I heard of it from a Mayo anesthesiologist friend. Maybe acupuncture is another possibility?? Have you spoken with palliative care? Sometimes they have ideas? Best to you both-. 🙏

Thank You for replying back to my post, @carlies! I appreciate these suggestions. Her doctor was very hopeful that if the chemo was helping the lung cancer, (which it is, so far), the pain would also be reduced. Unfortunately so far, this doesn't seem to be the case, however, we've only had two of the scheduled four chemo sessions so it may yet improve. Oxycodone was helping for a time, however, it seems that now every time she takes it she either vomits it up right away or it just doesn't work at all to reduce the pain. I think maybe the Fentanyl patch helps a bit but not sure. She does have a palliative care physician who is very compassionate and she told us she has a lot of things they can try which could help my wife with the pain. I think part of the problem is that my wife is a bit impatient and sometimes she doesn't give things a chance to work before giving up on them. She has done two sessions of acupuncture and I think this could be something very good for her. Her worst pain seems to be in the upper back but they concentrated on that area the other day and it seems to be somewhat better. You suggested possibly talking to someone at Mayo's pain clinic as well. I was wondering if that was an option...maybe even getting an appointment with someone? We live in Denver but I know there is a clinic in Phoenix right? She has a Kaiser medicare supplement and her team is very good, however, I do wonder if the Mayo pain clinic could help her further with the pain.

Thanks again for your assistance and anyone else who can offer suggestions or share their similar experience.

You are very wel.come. I hope something helps. It is really hard to be patient, isn't it? Sometimes patience is good, sometimes it's not... I think they call that 'balance' :), If you live in Denver, maybe someone at Rocky Mountain Cancer Ctr. can help you?? I know there are some good docs there. Perhaps a pain clinic/pain docs? Yes- Mayo in AZ. ~Best. Carlies

Thanks Carlies. Maybe we'll check out that RMC center as well and also try to talk with someone at Mayo. Another source of pain she has that is getting more prominent now is in her lower right arm, wrist and hand. She had been getting a lot of numbing in that area and then she recently had a slight fall where she landed partly on that hand. Ever since then she has had a tremendous amount of pain and also lack of mobility in that hand. From googling (which I know is not definitive of course) it seems like she may have carpal tunnel syndrome as well She is a hair stylist and she has a sister who was diagnosed with CTS...she had surgery but it doesn't seem to have been a great success. Anyway, I sort of digressed from the cancer but I thought I'd mention it. I think that pain may not be related to her cancer so that might be another reason for us to talk with someone at Mayo.

thanks again,
@tns

@tns, Here’s more info about Pain Medicine at Mayo Clinic if you need it https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061

Were you able to talk to a pain specialist at Mayo?

Hello, i have similiar pain, i have been on tagrisso for 4 year, and had 10 rounds of radiation last year in september, and i am now feeling pain in my right side and have a dry cough, i take tylenol witch helps, and try not to take too much in fear of it messing with other parts of my body, i hate feeling like this and wonder if it will be like this the rest of my life

Carpal tunnel surgery worked for me. However, It took a year to fully recover. It was one of the surgeries I would highly recommend. I had trigger finger surgery at the same time as CTS. I did have issues for several months. The doctor prescribed PT with someone trained in Hands. I did that for a couple of months, then needed patience. I did my hand exercises during that time. They are easy to do and can be done anywhere.

Wishing your wife all the best. I have been diagnosed with sclc. Never a smoker and very active. Treatments have not started yet. I guess it's going to be a rough year with probable lasting side effects. Sounds wonderful. Life sure throws us curves. My plans for the future have sure changed. I am surmising that my cancer was caused from radiation I had for breast cancer in 1991. We make the best decisions based on the information we have at that time. Then we go forward.

Take care of yourself as your wife's caretaker. Keep on top of your health.

Blessings.

@vlpr- Welcome to Mayo Clinic's Connect. My name is Merry and I am the Mentor for the Lung Cancer Group. I'd like to have Colleen move this post to the Lung Cancer Group.
https://connect.mayoclinic.org/group/lung-cancer/
When you had radiation, prior to the 1970s the dose was very much higher than it is now. Studies showed that it also could cause lung cancer in women years later. Sound like you?
https://pubmed.ncbi.nlm.nih.gov/8007020/
I'm sorry that you have joined a very busy group of people who are now dealing with all stages of lung cancer. I find it very curious that years later, yours is 61 years, can come back and slap you in the lungs! The type of radiation that usually does this is called ionizing radiation. (Energy emitted from a source is generally referred to as radiation. Examples include heat or light from the sun, microwaves from an oven, X rays from an X-ray tube and gamma rays from radioactive elements. Ionizing radiation can remove electrons from the atoms, i.e. it can ionize atoms.Oct 26, 2020

Radiation: Ionizing radiation - WHO | World Health Organization)

If it's ok with you I'd like to ask a few questions. When did you have your CT scan and or PET scan to determine that you have lung cancer? Have any dates been set up for further testing or treatment?

Merry

My radiation for breast cancer was in 1991 when we were living in CA. I had tubular carcinoma of the left breast which was discovered early. I was treated with a lumpectomy and 6 weeks of radiation.
For the occurrence of SCLC, I had my initial CT and PET scans July 16-17 when I had been admitted to Munson Hospital in Traverse City, MI for severe pains mimicking a heart attack. The biopsy of the tumor was done during that time. I was diagnosed with small cell lung carcinoma. It is in the lymph nodes, though it did not show up elsewhere.
I returned to our home in Florida a month earlier than planned. I am working with Dr. Zhao in the lung cancer clinic at Mayo Jacksonville. My initial visit with her was 08-05-22. A repeat of the PET scan at Mayo shows further involvement of the lymph nodes. I had a biopsy of one of the nodes in my neck above the left clavicle today, Aug-17-22. I am still having visits with specialists and tests are being done to determine the correct treatments for me. I have not started any treatments or lifestyle changes other than limiting my fluid intake so my sodium levels stay up. I also find I need to slow down as I lose my breath. I am quite hoarse. I'm told that is from the tumor pushing on the larynx.