Recovering from brain and lung radiation

[ValerieDean2016]

Good evening dear friends. My husband was diagnosed with small cell cancer of of the right lung 1 year ago. He has received chemotherapy Carboplatin & Etoposide since November 14th'16 followed by radiation two weeks of radiation.

Last scan HCAP clear. Coped well in chemo and in radiation however now suffering from side effects. Has been experiencing esophagitis, now recovered. Followed by loss of appetite, energy loss, depressed, agitatation, aggression and balance. Personally finding it to be challenging trying so hard being wife/nurse. Any one else here experienced same or similar. Any help would be much appreciated. We are alone without family. Thank you so much.

[amysdata]

Hi Valerie, I was diagnosed with small cell lung cancer 11 years ago. It is a little hard for me to remember what my moods were over the years, but what came to mind when I read your post was that I started getting infections in my lung a year after treatment. It started as low grade fevers in the evenings, my docs tested me for everything under the sun and could not identify what was causing the fevers. So I started going the emergency room for the fevers and was finally diagnosed with pneumoniaitis. I would feel really bad during these times but did not realize it was because of these fevers that were often just 99 degrees. This type on pneumonia is fairly common after treatments. By the way, I was treated the same drugs and radiation as your husband. I consider myself to be cured of cancer but I do have severe COPD and have to use inhalers and still get minor bouts of pneumonia. I think he should consider going on an antidepressant until he gets pass whatever it is he is going through. I will pray for both of you!

[ValerieDean2016 in reply to amysdata]

Thank you so much dear friend. I appreciate you taking the time to respond. Very encouraging to learn you are a survivor after 11yrs. Wishing you every success with your remaining conditions. Thank you for your prayers. I am a believer and I will pray for you. 💛🙏

[bellaella]

sounds like chemo brain to me. normal..

[ValerieDean2016 in reply to bellaella]

Thank you chemo brain ?

[ValerieDean2016 in reply to ValerieDean2016]

Would you kindly explain chemo. Thank you. 💛

[ValerieDean2016 in reply to ValerieDean2016]

Should read Thank you.

Chemo brain ???

[Denzie Moderator Volunteer]

Chemo slows down some of the cognitive ability of the brain=chemobrain. I'm inclined to think that this is also affected by the brain radiation. Amysdata made a good point about taking an anti depressant. He may also benefit very well from an appetite stimulant like Marinol.

How long since the brain radiation ended? Was it whole brain radiation (WBR-done to destroy existing mets) or prophylactic cranial irradiation (PCI- done to prevent brain mets when none exist)? I ask because some patients need to stay on the steroids a bit longer than most. Then again, staying on steroids too long will cause aggressiveness and agitation. Talk to his oncologist about the behaviors that trouble him. If you don't get help you need ask his primary care dr For help.

[ValerieDean2016 in reply to Denzie]

Hi Dennie, thank you for responding and all of the information you shared.

I did call our FP and he prescribed dexamethasone to help with loss of appetite and fatigue. I believe this was a short term boost as David is now being weaned off as the side effects in volume. He had prophylactic radiation for two weeks. Did very well in chemo with clear results. He was v happy and after two weeks of radiation he almost became a different person. He is now two months post radiation.

Thank you so much for your help. Are you a patient yourself Denzie ?

[Denzie Moderator Volunteer in reply to ValerieDean2016]

Yes, I am a 6.5+ survivor of stage 4 lung cancer. I've spent most of that time learning about treatments and their various side effects against the day I experience progression. The research skills and knowledge I experienced helped me when I developed my 2d primary cancer (breast).

[dmacdo9]

Hi Valerie , Sorry you and your husband are going thru this.I too have small cell limited lung cancer I had 2 chemos 3 days on 19 off and radiation at the same time .33 days of radiation, I also had pci,brain radiation. I do feel that this will all eventually straighten itself out ,but yes the effects of the treatment s are still with me and its almost 5 years survival. Its like little neuropathy pains and yes ,There is such a thing as chemo brain. But the worst thing with small cell you are always waiting for the other shoe to drop.I am sure your husband wasn't happy with this interruption or should I say disruption in his life.Just hang in there, everyday it gets a little better.This disease does not give an overnight recovery , There are caregiver groups for you too. Look into them ,My prayers are with you.

[ValerieDean2016 in reply to dmacdo9]

Hi dear friend thank you so much for taking the time to share your thoughts and prayers. So lovely for me to talk with you. David my husband has stage four we were told on the last review. They discovered a spot in his liver when prepping him for radiation and I guess at that time he moved from limited into stage four however, chemo seemed to help enormously as his last scan was all clear. A little confusing as initially we understood the cancer had two stages limited and extensive. We live believing he will remain clear and recover from the side effects. Praying you will recover from your side effects real soon and you will be able to return to a life of peace. I will pray for a miracle cure for you. Encouraging to learn you are almost 5yrs in survival Congratulations! And thank you once again for kindly responding.

[FtB_Peggy]

Valerie, Thank you for joining our community and sharing. This is a tough road, but as you can see, there is very loving and sincere support here with these wonderful people. If you would like some information on peer-to-peer support for patients and caregivers, for more information on support groups, please just email me at [e-mail]. I would love to send you some information to help.

So glad to have you here with us!

[ValerieDean2016 in reply to FtB_Peggy]

Peggy, Thank you so much. My pleasure to be here with everyone. Beautiful souls with so much to offe. I feel privileged to be surrounded by you all. 💛🙏

[ValerieDean2016 in reply to FtB_Peggy]

Thank you Peggy for your kind greeting. I would be interested in learning more about your peer to peer support or anything that you would feel to be appropriate for my situation. My background is nursing and rehabilitation counselling and have been helping others most of my life. Presently David and I are alone together without family. I am his primary care giver and have come to realize I need support also in order to continue to help David and others. I would appreciate any advice you may have. Much appreciation Peggy.

[FtB_Peggy in reply to ValerieDean2016]

Valerie,

Please email me at [e-mail]. Once I have your email I will get the information out to you right away! We also have a Patient Information Kit which you might find useful (I would need you to email me your street address for that - it goes snail mail). Keep in mind all of our materials (and shipping) are free.

I look forward to hearing from you. Also, feel free to call me anytime on our Support Line 844.835.4325. I would love to hear from you. You are wise to reach out, you have much to carry.

Hugs.