Pembrolizumab/Keytruda

Hi Amelie

My mother has stage 4 lung cancer and had her 4th Keytruda treatment last Wednesday.  She has not had any side effects really.  Just over the last few days she has started to feel weak and we wonder if this is the treatment.  However she has been put on anti biotics as a precautionary and these have really knocked her tummy about.   She also had an episode where she began to really shiver her hands were shaking but then they stopped.  Her temperature was ok though.  She goes for a scan next week and we are hoping that things have started to improve when we get the results.  We hope the treatment is working. 

I really hope your mother does well on keytruda as well.  Has she had 4 treatments now too?  What were your mums hand shaking like?

Best wishes Natalie

Saw my Oncologist Consultant yesterday and am to start Keytruda next week or week after. Back up plan is chemo.

He said treatments every three 3 weeks for two years with a progress meeting with him in January. He also pointed out I would know if the treatment was working when I went to see him. Made me smile when he said 2 years.

Tested 75 - 80% positive on the marker so hope this is a good thing. Consultant also mentioned that this treatment is a game changer and that he is seeing a success rate of 7-8 out of ten. Lets hope so.

Not been told officially re staging but cancer is in the top of my left lung (which has collapsed (8cm tumour)), there are mets to the chest wall and there is a small lesion on the Liver. Clearly we are at a IV.

Fingers crossed that side effects are milder but prepared to take what comes. 

Off now to write up my profile and diagnosis history. Lurked for a while but time to join in the party.

Hi everyone.

Sorry to hear about the treatment not working or having side effects for some of you.

I have been on this treatment since January and had my 13th infusion last week.  I've been extremely fortunate as its been working great for me. There's has been some shrinkage of the tumours and I've had little to no side effects.

I really hope anyone on this, or anything else for that matter, has a good an outcome as possible.

Take care.x

Hi Natalie,

My mother's just finished her 2nd treatment, we are waiting to see if she is going to do the 3rd. She is okay though, no huge side effects..so I think she will continue..

We talked to the doctors about her hands shaking and they said it could be because of the meds she is doing.. But this was not a solely episode, it is a present symptom..

Hope this treatment works well to both of our mothers.

hi mummyb, I had 3 rounds of chemo and ended up in hospital unable to eat and felt terrible ...went onto keytruda and started to feel better after just 3 days after first treatment... been to 4 sessions and feel so much better now..off my pain killers and energy returning, cough gone ...only side effect a bit hot and itchy but there is no comparison to chemo side effects...... it has been a miracle drug for me in terms of the difference to how I feel.... everyone reacts differently but do try it after chemo it was so easy..good luck

Hi Lettuce,

The same happened to my mother, after her 1st treatment she started feeling much better.. She was always complaining about back pains, and they were totally gone. But she only completed 2 treatments..

Have your exams showed also a regression of the tumor ?

Hi lettuce and Amelia.

So pleased to hear this treatment is having less side effects. Really hope this continues.

I believe a lot of people experience better breathing whilst being on this regimen.  That hasn't improved for me unfortunately.  Maybe that's because they removed a part of my lung back in 2013.

I've heard of one person who no longer needs his mobility scooter to go out now after needing it for over 12 months!

Great news

Take care.x

Hi Amelie

We've been back to clinic today and her latest ct scan shows improvement so she has her 5 th keytruda on Wednesday we are very pleased. We haven't got much details as it hadn't been reported on but front the pictures it's looking better.  Her breathing is still not great but we are hoping this will improve soon.  It seems mums shivering was an infection last week which landed her in hospital a couple of days on iv antibiotics.  Her infection marker is back down now.

My mum has dry eyes which we think is a side effect so she is getting some eye drops.

Hope your mum is doing well too.  Take care.

Natalie xxx

Hi mummyb

Do you mind me asking what stage you are at? Sounds like you've had a tough few years.

My mum has stage 4 lung cancer with bone mets.  She has her 5th keytruda on Wednesday.  There does seem to be improvement on the latest scan.  Just could do with her breathing improving.  She is still working though.

Thanks 

Natalie 

Hi Natalie

I'm stage 4. I had mets to the breast and pulmonary artery. Later in my abdomen too. The breast and abdomen have disappeared and Im left with the one on my pulmonary artery. The latest is in my lung lining. The same side as the original lung tumour. 

The first 18 months were pretty tough emotionally and physically. After that I remained stable for a couple of years so it was more emotional then. When I was told it was growing again I thought I would start with more pain from the cancer and suffer from side effects.  Fortunately the immunotherapy is way better than the chemo for me.

I really hope your mum starts to improve soon.

Take care.x