Hi there, I wonder if anyone can share their experience on keytruda. Mum tried chemo for 3 rounds but the oncologist says the response wasn’t big enough and that we should move straight onto keytruda. We were so devastated at this, we hoped for better. However the chemo really took its toll on her and I think she was glad to move away from it. Mum has stage 4 NSCLC with mets to adrenal glands and lymph.
She begins treatment in 2 weeks and today we received her oncologist appointment dated in February, that’s 3 months away. Does it take that long to see if this treatment is successful, or would bloods or a test usually be carried out sooner? Is it normal to be anxious about this wait... if it doesn’t work it’s such a long time to wait to find out and try something else.
I guess we’d see progression by worsening of symptoms if things were getting worse. To date, mum is relatively well and able to carry on with most day-to-day activities, lots of dog walks and fresh air.
Thanks in advance for any thoughts. These forums really do provide so much support to both patients and families and I’ve really found them to be a place of light and hope when the internet can be so scary. X
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Your mom should be receiving lab work before each infusion that an oncologist checks over before the infusion. Many times no results are noted at the first CT scan after 3 months due to inflammation. Best wishes on Keytruda!
Thanks so much for your kind words of advice. Hard to be patient when you want something to work so badly but then, it needs time! All the best to you x
I'm on target therapy tablets called palbocilib and have a scan every three months to make sure everything is ok, so maybe they need 3 months to tell if treatment is working or not. I'm like you think I would know if I was getting worse. All the best to your mum, hope she stays well, try not to worry I know it's hard. Sending hugs to you both
Thanks so much for your advice and kind words. I think we just need to keep busy and keep positive for the best outcome. Christmas around the corner lots to divert our attention away from this. I wish you well on your treatment! X
Keytruda takes at least 3 months to show visible results on scans. I too am on keytruda and have had 2 infusions so far. My symptom have started abating after the 2nd infusion but my doctor said its unwise to scan early as lesions may appear bigger due to inflamation. So i need to wait for 3 to 4 months. All the best and i hope all goes well.
Thanks so much for the advice, I guess like everything with this disease it’s all a waiting game! Have to keep the positives that this drug is available to mum when a few years ago that wasn’t the case. I wish you all the best with your treatment and hope it’s effective x
I have been on Keytruda for colon cancer for 7 months now. The traditional chemo didn’t work. After a few months my cea numbers went up. Scans showed lymph nodes involved. My oncologist started Keytruda. It seems I responded quickly. After only 1 treatment my numbers went down. I have had almost no adverse reactions to the treatments. It does come with caution that it can suddenly cause problems, but so far so good. My numbers went from 38 to unmeasurable in 5 months. As long as I tolerate it, she expects to continue it for 2 years. Good luck!
My Dad received Keytruda. I don’t really know if it worked but immune support is standard of care best I can tell. My only advice would be to get more regular chest X-rays. My Dad got them every couple of months and so pneumonitis snuck up on us.
Best of luck to you, I know this is a terribly hard time
Keytruda is one of the immunotherapy treatments often used as a second line treatment after chemo. It can have really good results but it also has a potential for many side effects that you have to be very cautious of they will give you a list of things to be watchful fall while she is in the treatment.
Overall the majority of people find it much easier to tolerate than chemo. it actually has different side effects typically than chemo but for the most part as I said many feel it's much easier treatment.
And yes, she should be having labs on a routine basis and also CT scans to follow her status. I would assume they must have done a CT scan to make a determination that the chemo wasn't working as they hoped if not I would ask for one before they just switch her to another treatment. I also wanted to point out that I never had any changes and symptoms during any of my treatment so there was no way for me to know if I was better or worse until I had a scan. Of course I've never had any symptoms of lung cancer not even a cough or any shortness of breath. If your mom is having more difficulty than I would bring her in more frequently and have that address by her oncologist.
Additionally it does tend to approximately three months to know if it is working and that would make sense that they may not be scanning her again for 3 months but I would still think she would have follow-up care with her oncologist in between.
I myself was put on Opdivo which is much like keytruda after I had progression while on chemo and had an excellent results and I'm now in remission. I sincerely hope your Mom to you will have excellent results in minimal side effects.
During the time I was having infusions I saw my oncologist before each infusion and also had Labs roughly every six weeks and CT scans every 2 to 3 months.
I'm wishing you both the very best and hope she has excellent results.
Thanks so much for your advice and words of encouragement. It’s a time of uncertainty, but we live in hope. Mum has a mild cough, but as you say it’s difficult to know really if something is working. Mum feels tired at the moment and I think that’s more the after effects of the chemo. It’s hard to not get carried away with keytruda being a magic wand, as it isn’t. But it’s a new treatment which could potentially give the results we need. All the best to you on your journey!
I hope your Mum will be one if the excellent responders and do well. More and more are living long lives with Stage IV NSCLC. My Oncologist told me just yesterday, he thinks I'm doing excellent and will continue to remain this way for many years, happy news.
The newest research shows immunotherapy is having great success with longer term survival. The numbers are going up and many reach five years and longer. Something that didn't happen nearly as often just a few years back. The percentage continues to increase and they are very excited to see this.
I hope it works well - I had a first treatment in September after being very pleased to be given the drug.
All was well save extreme tiredness, itchiness, etc. until half way between treatments, but could feel an improvement in breathing after around 10 days!
2nd treatment early October caused one of those adverse effects in that it developed hepatitis inflammation in my liver resulting in 8 days in hospital on pesky steroids. Thankfully, no jaundice developed as they got it in time it seems.
Routine was that I had full blood tests done 24-48 hours before each treatment, and phoned in my temperature at 8am on the day of treatment before the pharmacy made up the infusion later that morning.
A CT would be done after the third treatment, and a consultation had a week after.
That blood test is important to check for any problems brewing.
My problem started a week after my 2nd treatment and the oncology dept. hauled me straight in to the ward after another blood test, but I did have the CT as scheduled after coming out of hospital.
Still having weekly LF tests, and I see the oncologist on Friday this week ...got fingers, toes, and everything else crossed ..so not sure what to expect.
I'd love to be able to carry on with Keytruda as I'm sure it had begun to work very quickly. My breathing was better than it had been for months, and I'd lost a rasp when breathing, until this course of steroids took hold and made my immune system flat. Now I'm having to be careful going up and down stairs again!
When it works as it should, it appears to be a very good drug, and I'd choose it anytime if able - hope your mum finds it very acceptable and effective!
Hi ,When I started Keytruda it effected my liver function and intially went on steroids for 10days .It worked settled down and I have had several more infusions without many side effects ,since.A bit itchy and a couple of bowel issues which settled quickly so fingers crossed you can get back on it .Good luck Diane .
Made a good recovery from hepatitis and was home after 8 days on reducing steroids. Rather weak and light headed, but improving
Two weeks later, I developed pneumonitis and was back in hospital for 12 days on mixed antibiotics.
While in hospital, my oncologist visited and told me that she would not risk any further treatment with pembrolizumab. She did confirm that yes, it had been visibly working with only two doses, and it hadn't spread anywhere.
I'm devastated as I had immense faith in that drug, but she said the hepatitis was too severe to risk trying it again.
The pneumonitis is just another of the severe side effects the drug can inflict, and here I am 8 days out of hospital and have a really unpleasant itching all over my body and limbs. I've lost all the muscle strength/bulk in my legs, and walking has been difficult, as has the light headed feeling. Physio showed me exercises to do to regain the muscle bulk and also a temporary walking stick to help with balance and upright walking.
Seems the drug can go on causing problems after treatment has been stopped. It's triggered the immune system into action, and is causing mayhem for me.
I have an appointment with my oncologist this Friday, and she says we'll discuss treatment options ...I'm not so sure there are many options though as she did say there'll be no more immunotherapy, I can't have surgery, or radiotherapy.
I hope she can make things seem brighter than they do at present. 6 months of tests and consultations, two treatments, two very debilitating ailments with stays in hospital, and very little to show for it.
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