Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Pneumonitis

Fozdawn
Posted by

Hi Nikki, sorry all new to this. Not sure what Pneumontis is, but reading your post I've got the same problems. I wake between 4-5 every morning and I am eating constantly. I have a meal then I'm looking for what else there is until I go to bed. I have lung cancer and my 2nd dose of chemo tomorrow and on steriods.

Youcandothis
Posted by

Hi Jackie,lovely to see your name pop up. I've been on a little and I'm still here also. I managed 10 months of duvalumab before it stopped working, extensive spread to both lungs and mets to left hip. I had radiotherapy on hip for pain relief which has worked wonders and I'm  about to undertake 3rd round of carboplatin/pemetrexed, I also have a monthly injection of Denosumab for bone mets. Despite this I am continuing to work full time, albeit some days from home. I'm lucky, my work enables me work agile. I'm waiting for the date for my next CT scan to see if this chemo is working. I do hope so!!

I'm pleased to hear that you and your husband are still battling on and it is a blikin battle! But you're doing it! 

Best wishes

Nikki

Youcandothis
Posted by

Hi Fozdawn, yep the steriods will do this but they do help with the side effects of the chemotherapy.  My oncolgist agreed to reduce my dose and that has helped with waking and rading the fridge constantly and has not had an impact on Chemo symptoms so I'm happy with that. I also found myself feeling really low while on the steriods and the reduction has helped this also. It may be worth having a chat with your Oncolgist if its bothering you.  Good luck with your 2nd cycle tomorrow. 

Youcandothis
Posted by

Hi Fran

Yes this site has great support. Even if you don't post, reading the experiences from those that do really helps. I what I called "lurked" for a long time before having the courage to post or reply to a post. 

Pneumomitis is a common side effect of immunotherapy and if caught early they can clear it quite quickly. I'll keep my fingers crossed that treatment can again commence in a couple of weeks. 

I didn't experience tyroid or balance issues while on immunotherapy. Have you discussed this with oncologist it nurse? Also maybe someone on here has also had these issues and could advise? 

Best wishes

NIKKI

hartij
Posted by

Hi Nikki

Glad to see you here and how well you did getting through duvurlamab. Sorry things didn’t continue but there’s always another option. My husband’s PET scan showed activity in the primary tumour in his right lung again so he had another lung biopsy and that was sent for genetic sequencing to find another drug. Fingers crossed we get those results tomorrow or if no results a further plan, must have a plan! He’s feeling quite well at the moment so that’s good and really hope it continues. Hope all goes well with your chemo 

Jackie x

hartij
Posted by

Hi Nadine

How are things going? My husband completed 4th cycle but PET then showed further activity in primary tumour so no more docetaxel continued with nintedanib but had lung biopsy and genetic screening to look for another drug to get the beast back in the cage! He’s feeling ok right now although the chemo has affected his heart so that’s another thing to contend with.

Hope all’s well

Jackie x

Youcandothis
Posted by

Hi Jackie

Did you get the results and a new plan?

I received the results of my latest CT scan - all stable! Will meet with oncologist on the 5th July to discus next steps.

Nicky xx

hartij
Posted by

Hi Nicky

Great news glad to hear all is stable. We have results of PET scan shows further activity in primary lung tumour, he had biopsy for DNA sequencing but results showed no matches sadly. So currently on Nintedanib and CT scan on Tuesday fingers crossed results are ok, should get them on Friday. Glad you’re ok.

Jackie x