Wilma is a skin cancer specialist nurse, here to answer your questions about different...
I've had 5 infusions of Keytruda and had the results of my CT scan yesterday. The lesion in my liver has shrunk and I have no other signs in my body now. Previously I had specks in both lungs. I had gamma knife treatment for 5 small tumours in my brain and Keytruda shrank the largest one. The only side effect I've had is my thyroid gland stopped working and I've been on levothroxine since Christmas.
Has anyone else got experiences? Everyone asks me how long will I be on it. I say as long as it's doing its work.
Hi sunnymeads and welcome to the online community
I don't have any experience with Keytruda/ Pembrolizumab but there are quite a few people on here who are having this treatment and I'm sure they'll be along soon.
In the meantime I'm hoping you might be able to help SarahT57 who has also just joined this group and is looking for information about side effects while taking this drug. If you feel able to help clicking on this link will take you to her post.
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Hi sunnymeads, I’ve just had my 31st dose of Pembro/Keytruda. Ita a bit late to recall my story now but if you click on my name and go to my profile you will see my history of becoming clear on Pembro and remaining clear off treatment but then an unexpected return and restart of Pembro last June. I hate being asked how long I’ll be on it, I think people expect to hear just for a few weeks. At the start I felt I would be on til it stopped working or death. Then as it worked so well I thought one year and I’d been extremely lucky and it wouldn’t come back. My current plan is that I will have it for 12 more months, as I’ve just had surgery to remove one node it wasn’t working on, and the expectation for me from oncology is that it has worked everywhere else, and the extra months will mop up any to small to see cells, and the hope is I will remain clear for a long time. The surgeon not so cheery, removal of the node doesn’t mean it won’t come back. So there’s lots of hope but no guarantees, but new treatments coming along all the time that change for the better our prospects.
I do feel a lot better that for me I can answer that how long question by saying the plan is another 12 months. It’s a lot nicer having a positive goal. When I first started on Pembro there were articles in the paper about Jimmy Carter the ex US president being clear after Pembro and cyber knife treatment so he was a positive example for me to well keep positive about.
i wish you luck with your treatment
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I had my original melanoma cut out of my thigh in January 2017 followed by wide excision and 3 groin nodes out in March. 2 of those were positive so I had the remaining 12 taken out in May 2017. 6 monthly scans were fine until June 18 when I had an enlarged lymph node in my pelvis.
It was decided that I'd have this and the other pelvic and aortic nodes removed on my left side. I was operated on after Bank Holiday Monday. 7 out of 16 were positive and the next CT scan in October showed that I'd traces in my lungs and liver. I started on Keytruda 26th November.
The CT and MRI scans I had in January showed it was a 'mixed' response for lungs and liver, but I'd now got a 4mm lesion in my brain. They decided to treat that with Gamma knife and I had to go to the National Hospital for Neurology and Neurosurgery in London on 1st March. Their MRI showed that I had another 4 lesions at the back and front but the original lesion had shrunk to 2mm. They zapped all of them.
I had another CT scan done a fortnight ago and got the results on Thursday. My lungs are clear and the liver lesion has also shrunk to 2mm. I'm having my 6th infusion on Monday and await a date for another MRI scan of my head luckily at Mt Vernon hospital and not London.
Just to add that I've been a widow for 19 years and have no children. My husband died aged 50 of a family heart condition. I've always been someone who's been optimistic unlike my brother who lives in Cambridge who was diagnosed as a catastrophist.
I’m glad you’re keeping optimistic with that life has thrown at you, I occasionally have to remind myself to be.
Always feel out of it on Mothering Sunday as well, but a friend reminded me that we should be thankful for our mothers and grandmothers.
I've just this week found a copy of my father's mother's death certificate. I know she had cancer, but didn't know she had breast cancer aged 42 in 1924 with 3 boys under the age of 10. She had a mastectomy and died 20 years later of a secondary carcinoma of the pleura. Both Nellie's youngest boys couldn't go to her funeral because they were in the army in Italy. My father was her second son. He'd been married 2 years and I came along in 1948.
My own mother had cervical cancer aged 59 and had a hysterectomy followed by radium treatment in 1974. It burnt her bowel and had many other operations to remove the adhesions. She finally had her bowel removed aged 80, but died 3 days later of pneumonia. She was always optimistic and counted her blessings.
Hi, have a look at my profile for more about the success of keytruda. My oncologist tells me that current thinking is that after two years your immune system is trained and they can take you off and still see improvement. My issue is that it spread to my brain so it's quite a risk to take me off even though it looks like it's working ok.
I've not had any real side effects. Be careful not to blame everything on the treatment, sometimes even cancer patients can be sick like anyone else.
I'm having another MRI scan tomorrow to see if the gamma knife treatment I had on 1st March zapped everything. The Keytruda treated the original lesion they found in January and that had shrunk to half it's size in 5 weeks. It's stopped my thyroid gland working and I'm feeling tired, but seem to have more energy this week and hope to have my 7th infusion on Bank Holiday Monday afternoon.
Fingers crossed for tomorrow for you, let us know how you get on xx
Had problems again getting cannula in and didn't put it in until I'd been in the tunnel of the MRI once. I called it half baked.Tried right first and left crook of arm. Better than 1st March in London when 3 men had 7 attempts before I had the scan for gamma knife. I don't want to have a port unless I really have to. I think Theresa May has one.
Can I say also that my original 'wart' was on my notes still but it was on my left thigh. They don't seem to be able to correct it at the hospital after the mistake 2 years ago.It was 9 months before a Dr said it had to come out. My GP referred me in April 16 to the skin panel.
Haven't posted for a while, but doing ok with Keytruda and hoping to have my 10th next Monday. Has anyone else spotted that they are now doing Pembro infusions every six weeks. They are so short staffed with oncologists.
Thanks sunnymeads, interesting read, it doesn’t say if the dose is increased if it’s 6 weekly ? (As I believe Nivo dose is larger 4 weekl6 than 2 weekly) I hadn’t seen this and haven’t been offered it 6 weekly however I only see an oncologist every 6 weeks alternative does I just go in for bloods only, but this has always been the case for me since 2016. Interesting that this is dated 4/4/19.
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