Pembrolizumab/Keytruda

Hi mummyb

I have been on keytruda since August 2016 and have found the treatment easy to deal with , yes there are some serious side effects that can occur because of the drug but your oncology team will be looking out for these I've suffered minor things such as higher than normal temperatures, joint aches , itching, appetite loss and joint aching also minor pain on my right side where the cancer is, none of these side effects have stopped me operating as normal tho and after about 8 weeks I started to improve in my general health dramatically, I feel unbelievably well at present and the treatment is doing its job.  I'll keep my fingers and toes crossed that you are a responder any questions please feel free to ask .  Good luck

Pam xx

Hiya pam

Thank you so much for your response. When I was told I was going to be on this treatment my oncologist said the side effects were less harsh than traditional chemo. But when I read the literature it certainly didn't sound it.

I'm so pleased to hear that your responding so positively to the treatment yourself. You've definitely taken away some of the panic that had begun to set in.

I hope I start to improve generally to. The chemo and radiotherapy I've had in the past has taken its toll but at least it kept the cancer in check, for which I'm truly grateful

I really hope you continue to respond well and maybe we will exchange some experiences once I start the treatment.

Take care.x

Hi mummyb,

My husband had his first dose of pembrozilumab, he was ok until 7 days after, he had high temp, feeling weak, he ended up in hospital with sepsis.

After 24 hours they stopped iv antibiotics switched him to oral antibiotics, went home for 1 day, had temperatures for next 4 days, could not eat much or drink much...

Then he was re admitted back to hospital this week Thursday.

So now he is to stay in for full 5 days having intravenous antibiotics.

He is feeling unwell with this, his next treatment is next Thursday, ( as it's every 3 weekly)

This treatment will be delayed.

I hope it goes well for you, not everyone is the same.

mummyb I don't have any first-hand information for you but want you to know that I have heard of some really good results from Pembrolizumab/Keytruda.  Please go into this with a positive attitude.

Nan

Hi mummyb.

I dont have any first hand experience of Keytruda but i have read a fair bit about it as my wife was accepted on a clinical trial for it.

Unfortunately it was 50/50 which treatment she got and she got the chemo arm. By the time the chemo stopped working her kidneys were too damaged to crossover to the keytruda.

If you read the possible side effects of any drug you would never take anything, not even an aspirin!

Immunotherapy offers one of the best possible treatments currently available, and of course there can be side effects, some very serious as Nan can confirm from her experience with Nivolumab. But it's a risk/reward situation, and I would jump at the chance to take that treatment option.

Hope its ok to post links to other sites on here, but if you go to : https://www.inspire.com/search/?group_id=&query=keytruda

You should find information there as there are more people using it in the USA,

Try using the search facility on here too (next to "Donate")

Wishing you good luck with your future treatment.

Hi all,

As I am at the hospital with my husband daily, I managed to ask the cause of my husband's raised temperatures....

After having a ultrasound on his new found tumour on his abdomen it has infection around it.

1. Cause of raised temperature 

2. He has chest infection.

 This has also caused raised temperatures....

Because he did not complete a course of  

5 days worth of intravenous antibiotics this is what caused him to be unwell.

So none of his hospital admissions has been directly related to pembrozilumab.

Mummyb, I am extremely sorry if I frightened you... 

as I was not given a clear cause of his infection, even the Drs felt it was the pembrozilumab...

But now it's clear it's not...

So rest assured, the pembrozilumab has only given him a bit of a headache....

Not much else.. thank god..

These 2 infections are not connected to the pembrozilumab...

Mummyb you will be just fine.

I am glad I dug deep into the causes of his temperatures, as I pestered the drs, trying to get to the bottom of his temperature's and feeling unwell....

I just hate it, when you are not followed up by the Drs who know you...

I wished he had continued on his course of antibiotics to treat both infections intravenously, so his body did not have to work twice as hard....

I really hope wish and pray mummyb, you do really well.

But don't delay a raised temperature get it dealt with as soon as possible... my husband being my husband, hates being a pin cushion at hospital.. but if he listened to me... he probably would not have to be... but I have to let him be him, as Nans always says " I have to let him decide..."

she is right... I will never say she is wrong, she has made me realise a lot..

Nan's I can only thank you for it.

Deep in my heart, I believe we will get through this battle...

Love to you all.xxx

HI mummyb

Yes that would be great let me know when u start your treatment 

Love

Pam xx

Hi mummyb

My husband is on pembrolizumab/kettruda he is on his 6 th cycle he has this every 3 weeks once they have got it from the pharmacy which can sometimes take some time which leaves him waiting and very agitated it literally takes less than an hour so much better the previous chemo he was having the side effects for him have been loss of appetite tiredness and itchiness but I must say that after a talk with the dietician his appetite is now slowly starting to come back as is his energy levels his last scan showed that there was no further growth to his tumour on brain and the lung so something is working  

Hope this helps I wish you the very best of luck x 

Hi everyone

I really appreciate all the responses you have given. I've got over the initial panic about side effects now. You're right about not even taking an aspirin if you took on board the possible side effects.

I can't say I'm looking forward to treatment but i am in a positive mode. The treatment definitely sounds more tolerable than the chemo I had in the past and the results do seem to be positive. After saying that I did have great results from chemo. 

Hopefully I will have positive results from this too.

I will let you know how I get on. First treatment is tomorrow at 3pm. Fingers are crossed.

Take care everyone.x

Hi everyone!

My mother has been diagnosed with lung cancer stage IV. She was tested for the PDL1 mutation and 70 to 90% of her cancer cells had the mutation.

She started taking keytruda as a 1st treatment option about 1month ago - she completed two treatments. She had no strong side effects to the treatment. However, this week she started coffin and thus we went to the doctor with her. The doctor told us that it might be the tumor spreading and the treatment may have been no effective. Meanwhile, I am reading some stuff and I realize that atypical responses such as my mothers can happen and the tumor might grow in a first initial phase and then shrink if the patient continues with the treatment. Have anyone experienced this? Also, I don't know if there is a other treatment or other possibility for my mother if this treatments fails. Anyone knows more options?

Thank you in advance