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Re: Switching back to Pembro
Posted: Tue Jan 15, 2019 6:00 am
by plastikos
Jack&KatiesMommy wrote:Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia
Thank you for this insight Cynthia. I am currently trying to get as many different perspectives as possible. It is a good problem to have I guess and I am blessed to be in a position to even consider stopping treatment and just monitoring. So am I right in understanding that your onc is of the opinion that maintenance is the way to go? I wonder at what dose and if it applies to patients who became NED after 2 years as well.
Re: Switching back to Pembro
Posted: Tue Jan 15, 2019 6:02 am
by plastikos
dauofcamom wrote:This is such great news for you! I am so happy to read this.
It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year.
My mom did not respond well to chemo, in fact it almost killed her. Literally. She landed in the hospital for two weeks after her first round and so her oncologist took chemo off the table. Our only hope was to pray that it didn’t come back. Things were great for about four or five months, but the cancer did come back and this time it was in her peritoneum and deemed in operable. She was terminal and was going downhill rapidly.
I flew out to California in October to be with her and my brother and I were making plans for hospice as it didn’t appear she had much more than a few weeks. We had an appointment with her oncologist and because she is MSI high, he put her on immunotherapy (Keytruda). Within two weeks of her first round she was feeling amazing. Her pain was gone and she was putting weight back on. Three months after starting immunotherapy she had a CT scan and it showed that she had a complete response to the immunotherapy as her tumors were completely gone. She has put on 20 pounds and is as energetic and feeling like she did before she ever had cancer. It has been nothing short of a miracle.
Never ever give up.
Amazing story. Happy for your mom. Yes there is always hope!
Re: Switching back to Pembro
Posted: Thu Jan 17, 2019 3:06 am
by stu
Hi ,
Just wanted to let you all know that I have a friend diagnosed with lung cancer and starting krytrunda . I was able to show her this thread and the timelines . Thank you for sharing all of this as emerged from a very dark place .
Keep on pushing those boundaries.
Stu
Re: Switching back to Pembro
Posted: Fri Jan 18, 2019 8:11 pm
by Wonderfullymade
Jack&KatiesMommy wrote:Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia
I am editing this after thinking about it. I thought if the drug wasn’t working after 2 years that it wasnt going to work. Kind of confused now...
Re: Switching back to Pembro
Posted: Tue Jan 22, 2019 3:57 pm
by Jack&KatiesMommy
Wonderfullymade wrote:Jack&KatiesMommy wrote:Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia
I am editing this after thinking about it. I thought if the drug wasn’t working after 2 years that it wasnt going to work. Kind of confused now...
I think that my oncologist meant if there were masses or nodules that were not growing but could still potentially be cancer...or if a person had a CEA that was over 5.0 but not increasing (even if the Keytruda reduced the number fo tumors or reduced the CEA significantly over the 2 years) that he would not suggest stopping the Keytruda.
Cynthia
Re: Switching back to Pembro
Posted: Mon Feb 11, 2019 10:05 pm
by plastikos
Updating my own thread:
On my 2nd to the last dose of Keytruda as standard dosing (200mg every 3-4 weeks). I saw my oncologist in Singapore (I have 2 for multiple opinions) and he suggested that I stop treatment completely at the 2 year mark since that’s what he does with his other patients in complete remission and so far the responses have been durable. My main onc prefers to have some sort of treatment for a few more years, although he knows there is no data to support it. He is just more conservative which is good because I kind of get a balance in opinions. Tentatively we have decided that after my last dose next month I will receive a standard dose every 3 months for 1-2 years and depending on the scans during that time we might consider discontinuing the drug completely. I was fine with stopping cold turkey but my wife begged me to choose the 3-month dosing option as a compromise for her peace of mind.
Re: Switching back to Pembro
Posted: Tue Feb 12, 2019 12:30 pm
by henry123
That seems to be the path that I too will follow.
My family including doctors in the family wants to continue indefinitely whereas oncologist wants to keep options open at 2 year mark.
Let's see how it goes.
Re: Switching back to Pembro
Posted: Tue Feb 12, 2019 1:42 pm
by Wonderfullymade
Cynthia...thanks for clarifying that!
Henry and Plastikos....I get that! I think for my own piece of my a “ booster dose” would have calmed me, but ...I was not offered that option!
I must add ...It is a nice problem to have!
Wonderfullymade
Re: Switching back to Pembro
Posted: Mon Apr 15, 2019 6:17 am
by FindTheBestHelp
Jack&KatiesMommy wrote:Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia
I take it your onc would suggest the same option for you to consider? If so, what would be the interval?
Re: Switching back to Pembro
Posted: Wed May 01, 2019 11:42 am
by henry123
As I approach 2 year mark, I took a second opinion from another Medical oncologist . He has strongly recommended continuing with the medicine at current dose. As per him , only thing we are sure of is that we cannot see the disease in CT scans or bloodwork (CEA levels) but we can not be sure if it is gone .
It makes sense in some way. I think 5 year mark may be what he has in mind.
Also , I am hearing of cases where body did not respond to immunotherapy second time round . SO this may be a better option.
Re: Switching back to Pembro
Posted: Wed May 01, 2019 12:04 pm
by henry123
plastikos wrote:Hi all. Been gone for a while. Chemo took it's toll. As an update I have finished 4 rounds of chemo after a single dose of Keytruda in early December. Latest PET-CT showed almost all tumors (liver, nodes) have shrunk and are metabolically inactive save for one node (peripancreatic) which still has some activity, although weaker and smaller. I guess this is a good result so I will take it.
I am at the crossroads. My local onc who is my main doctor suggests to continue chemo. My onc in Singapore thinks the response is mainly due to the Pembro and suggests I switch back. I am MSI high. I trust them both and the fact that they have their own biases for the particular treatments they are suggesting is not lost on me. In the end I am choosing to take a risk at trying Pembro again for the better quality of life it offers. Hopefully it will work its magic. Still hoping against hope for a cure.
Plastikos,
In hindsight I would say that your doctor in Singapore was right. What do you think?
Henry
Re: Switching back to Pembro
Posted: Tue Jun 11, 2019 7:08 am
by plastikos
henry123 wrote:plastikos wrote:Hi all. Been gone for a while. Chemo took it's toll. As an update I have finished 4 rounds of chemo after a single dose of Keytruda in early December. Latest PET-CT showed almost all tumors (liver, nodes) have shrunk and are metabolically inactive save for one node (peripancreatic) which still has some activity, although weaker and smaller. I guess this is a good result so I will take it.
I am at the crossroads. My local onc who is my main doctor suggests to continue chemo. My onc in Singapore thinks the response is mainly due to the Pembro and suggests I switch back. I am MSI high. I trust them both and the fact that they have their own biases for the particular treatments they are suggesting is not lost on me. In the end I am choosing to take a risk at trying Pembro again for the better quality of life it offers. Hopefully it will work its magic. Still hoping against hope for a cure.
Plastikos,
In hindsight I would say that your doctor in Singapore was right. What do you think?
Henry
Hi Henry. Sorry. Just logged in after a long time. Been busy with work. A blessing. Yes I guess he was right after all.
Re: Switching back to Pembro
Posted: Thu Jun 13, 2019 3:29 am
by henry123
Ok.
My oncologist after much discussions have decided to continue with 6-week infusions of Nivolumab for foreseeable future . I was hoping that the medicine would be stopped at this stage but I guess the doctor knows the best. Also infusion at 6 week interval is not that bad as long as the disease is controlled.
They feel that there may be some dormant tumor cells that may get activated if the medicine is discontinued.
Immune system is currently destroying whatever active tumor cells are there but the dormant ones can mutate and cause trouble later on.
As per him, the tumors are constantly mutating and trying to find a way to fight the immunotherapies as well as fool the immune system.
there was also some discussion in which he indicated that some mutations respond better to keytruda and others to nivolumab and in some cases they have used both the medicines one after the other . a couple of new immuno therapies have emerged but the toxicity levels are giving a lot of trouble.
Re: Switching back to Pembro
Posted: Mon Jul 29, 2019 2:53 pm
by henry123
Updates , folks.
What's going on at your end.
Tests. Continuing or stopped medication.
Re: Switching back to Pembro
Posted: Tue Jul 30, 2019 3:08 pm
by Jack&KatiesMommy
Still on Keytruda...month 15 for me.
Cynthia