Lung Cancer

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

Minor Disease progression immediately stopping Keytruda (Immunotherapy)

sdesmukh
Posted by

Hello, 

My father has been suffering from Stg 4 NSCLC (Triple Negative, PDL-1 +ve at 30%) from last 4+ months. He is 73 yrs old. Since his performance score was > 2 doctors advised against chemo (Carboplatin+Paclitaxel) and he has been on Keytruda monotherapy for 3 cycles now. It has helped reduce his pleural effusion, reduced tumors, increased apetite and pain significantly.

However, a week ago doctors found new lesions on C4 and C5 cervical vertebrae. Now the doctor says that this being "disease progression",  Keytruda needs to be immediately stopped and he needs to be put on Paclitaxel (if his PS<2) or given Tarceva (just due to lack of other options). Has anyone else been in the same boat ?

I'm very confused as he has had a lot of positive effects after we have started Keytruda and just the cervical lesions being new are going to make him devoid of any treatment options whatsoever.

Can we not continue Keytruda for a couple of more cycles and do a scan again ? He is already having palliative radiation for the cervical lesions FYI. Please advise on how I can help my father survive this disease for as long as possible ?

Thanks

chellesimo
Posted by

Hi

sorry you have not had a reply yet, and I’m sorry I’m not going to be much help, but just wanted you to know that we are hear even if we cannot offer the best advice.

Its good that your Dad is having radiotherapy for palliative care, as this will help him to be more comfortable. It’s such a shame the immunotherapy hasn’t worked. From what I’m reading it doesn’t work for everybody. I do know the desperation when a parent is so unwell as I faced it with my mum. 

I do hope things look up for your Dad, and wish you both all the best. 

Chelle 

Ginajsy
Posted by

Hi Sdesmukh

I am also sorry that I am not able to give you personal experience of immunotherapy. Do you attend appointments with your father? If so have you discussed your thoughts and concerns with either his oncologist or lung cancer nurse specialist?

Usually any signs of progression on immunotherapy does mean that it is withdrawn, which I am sure is frustrating if he has shown improvement in all other areas.

You could ask this in the ask an expert where they may be better able to give you answers regarding treatment options. Or you could give the helpline here a call to discuss between 8am - 8pm any day on 0808 808 00 00.

You are also of course able to seek a second opinion on your father's treatment too if you feel this could be of benefit.

I hope that helps.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
DFY
Posted by

Hi Sdesmukh....so sorry to hear of your Dads diagnosis and that the Dr. is saying keytruda is to be stopped, it’s devastating, my oh also had it stopped when it failed to prevent progression. We were told that sometimes a very slight progression can be a pseudo progression (which is when small progression happens initially but then is seen to shrink the tumour) My understanding is that significant growth( as in oh’s case) or a spread to elsewhere as in your dear Dads case means that it’s now not working and too risky to continue. All I can suggest is that you ask the Dr again why after such a positive start they feel they cannot try a little longer, I’d also like to add although terrifying not knowing how chemo will respond or the effect upon our loved ones in our case it has worked and although from what you’ve said you’re Dad is unlikely to receive the same chemo as my oh everyone is Individual, treatments and their effects can vary significantly and your Dad may  respond well and see a continued  reduction to the tumours or a stabilisation.  Hugs, love and Best Wishes to you both. Please feel free to ask further for advise or support here or with the medical teams. Dawn. Xx

sdesmukh
Posted by

Thanks @DFY for sharing details with your oh. What was his dx?

My dad's onc said he is really very weak to take any immunotherapy or chemo right now. Asked us to try and make him eat. I'm hoping it has the radiation that has made him so so weak and not the disease.

While it may be pseudo progression, he is all mutation negative (triple negative as they call in Lung CA), can't take chemo cos of weakness and age. So keytruda or PD-1 inhibitors are the only option out there.

DFY
Posted by

Hiya sdesmuka... sorry I don’t know what dx means but I’m happy to share this with you if you explain. Radiation I understand does leave most feeling very tired so hopefully he may soon feel more rested and enjoy a little more energy and some quality of life, obviously he will need to take in nutrients to assist, maybe ask his gp for some complan type drinks, they also do soups which your dear Dad may enjoy... its a viscous circle really as he’s not burning energy he’ll not feel hungry but if there’s a favourite meal or snack maybe he could be encouraged with that, “little and often” if he can be tempted. Hugs, love and Best wishes. Dawn. Xx

sdesmukh
Posted by

dx=diagnosis

DFY
Posted by

Hi, ta for clarification (thought it might be) Martin was diagnosed with nsclc, adenocarcinoma (5cm tumour in top right lobe with metasis in two lymph nodes and a 2.3cm tumour in his brain, so incurable but treatable. If you read our profile there’s a brief summary of our journey so far. Hugs, love and Best Wishes. Dawn. Xx