Going Beyond Standard Immunotherapy

Posted by ta52 @ta52, Dec 9, 2020

In my doctor's consult yesterday I was told that because I was tolerating the infusions so well with little or no side effects they want to go beyond the standard four infusions and continue with a Keytruda/Alimta "cocktail". Is this normal? Has anyone else been through this and what were the results?

@ta52– Good morning. I would be so happy with this news! Are you? I'd be jumping for joy!

Please know that standards are there so that doctors have a guideline for how much medicine would be advisable for you. That recommendation, of course, depends on how well you tolerate it and how it is affecting your cancer.

Since you are tolerating Keytruda/Alimta so well and this cocktail is so good I'd go for it. When was your last CT scan? Any news on whether your cancer is less?

REPLY
@merpreb

@ta52– Good morning. I would be so happy with this news! Are you? I'd be jumping for joy!

Please know that standards are there so that doctors have a guideline for how much medicine would be advisable for you. That recommendation, of course, depends on how well you tolerate it and how it is affecting your cancer.

Since you are tolerating Keytruda/Alimta so well and this cocktail is so good I'd go for it. When was your last CT scan? Any news on whether your cancer is less?

Jump to this post

Thanks, Merry. I think the term is "cautiously optimistic". I haven't had a CT/PET Scan since treatment began. My lung cancer had metastasized in my chest and neck lymph nodes. Some of them were visible (which made a biopsy real easy!) and those have all but disappeared. I have my fourth infusion on 12/28 and then a CT the day of infusion #5 on 1/18 so we'll have some indication then. But like Tom Petty said, "the waiting is the hardest part"!

REPLY
@ta52

Thanks, Merry. I think the term is "cautiously optimistic". I haven't had a CT/PET Scan since treatment began. My lung cancer had metastasized in my chest and neck lymph nodes. Some of them were visible (which made a biopsy real easy!) and those have all but disappeared. I have my fourth infusion on 12/28 and then a CT the day of infusion #5 on 1/18 so we'll have some indication then. But like Tom Petty said, "the waiting is the hardest part"!

Jump to this post

@ta52– I say that too! Good news that there is improvement. Most definitely fingers and toes crossed for you!

Liked by ta52

REPLY

I’m not sure this is the right place to post this but have to start somewhere. To Merry, the young lady with lung cancer taking Keytruda. In June 2019 I was diagnosed with stage IV NSCLC, it was in my lymph nodes on my spine and a tumor in my head. The Oncologist looked my wife and I straight in the eyes and announced “you have 6 months, maybe a year, if your lucky”. I remember getting angry, “who do you think your talking too”? After 3 rounds of chemo, I told the Dr no more, the side effects made a complete invalid out of me. I wasn’t willing to live that way. We went on immunotherapy Keytruda after an MRI that showed very little, if any, improvement. Aug 2019 MRI showed a considerable shrinkage in the tumor. At that time I started a regiment of unprescribed medication in addition to Immunotherapy/Keytruda. Dec 2019 the lymph nodes were clear, the tumor had shrunk considerably. I continued this treatment and a PET scan in May 2020 showed I was cancer free, it was ALL gone. The Dr referred to me as a miracle. As of today I am still cancer free and intent staying on Keytruda as long as I can. I got the same 2 year limit on Keytruda but am going to challenge that. So, Merry, never give up, never. I was 79 years old when diagnosed, am now 81. I’ve learned prayers work. I sincerely hope this helps in some small way.

REPLY
@dutchw

I’m not sure this is the right place to post this but have to start somewhere. To Merry, the young lady with lung cancer taking Keytruda. In June 2019 I was diagnosed with stage IV NSCLC, it was in my lymph nodes on my spine and a tumor in my head. The Oncologist looked my wife and I straight in the eyes and announced “you have 6 months, maybe a year, if your lucky”. I remember getting angry, “who do you think your talking too”? After 3 rounds of chemo, I told the Dr no more, the side effects made a complete invalid out of me. I wasn’t willing to live that way. We went on immunotherapy Keytruda after an MRI that showed very little, if any, improvement. Aug 2019 MRI showed a considerable shrinkage in the tumor. At that time I started a regiment of unprescribed medication in addition to Immunotherapy/Keytruda. Dec 2019 the lymph nodes were clear, the tumor had shrunk considerably. I continued this treatment and a PET scan in May 2020 showed I was cancer free, it was ALL gone. The Dr referred to me as a miracle. As of today I am still cancer free and intent staying on Keytruda as long as I can. I got the same 2 year limit on Keytruda but am going to challenge that. So, Merry, never give up, never. I was 79 years old when diagnosed, am now 81. I’ve learned prayers work. I sincerely hope this helps in some small way.

Jump to this post

Thank you for sharing this information. Keytruda has been brought to me as an option. My question, if two years is the limit, what happens after that?

REPLY
@miriam57

Thank you for sharing this information. Keytruda has been brought to me as an option. My question, if two years is the limit, what happens after that?

Jump to this post

I’m not sure other than the answer I received was “the study only lasted 2 years”. My 2 years are up in June this year and I am going to challenge the 2 year standard. If it’s any consolation, Keytruda worked for me. I’ve had excellent results with no reason to believe it won’t be effective beyond the current protocol. I will be sure to post how my challenge turns out. Never ever give up.

REPLY

My Two years are up this year also. My Dr said they will take another look at options as their is new stuff coming every day. Will know they will do the best for me. Otherwise God might want me and that’s another option. Best to you and 🙏🏻 Prayers for you.

REPLY
@dutchw

I’m not sure this is the right place to post this but have to start somewhere. To Merry, the young lady with lung cancer taking Keytruda. In June 2019 I was diagnosed with stage IV NSCLC, it was in my lymph nodes on my spine and a tumor in my head. The Oncologist looked my wife and I straight in the eyes and announced “you have 6 months, maybe a year, if your lucky”. I remember getting angry, “who do you think your talking too”? After 3 rounds of chemo, I told the Dr no more, the side effects made a complete invalid out of me. I wasn’t willing to live that way. We went on immunotherapy Keytruda after an MRI that showed very little, if any, improvement. Aug 2019 MRI showed a considerable shrinkage in the tumor. At that time I started a regiment of unprescribed medication in addition to Immunotherapy/Keytruda. Dec 2019 the lymph nodes were clear, the tumor had shrunk considerably. I continued this treatment and a PET scan in May 2020 showed I was cancer free, it was ALL gone. The Dr referred to me as a miracle. As of today I am still cancer free and intent staying on Keytruda as long as I can. I got the same 2 year limit on Keytruda but am going to challenge that. So, Merry, never give up, never. I was 79 years old when diagnosed, am now 81. I’ve learned prayers work. I sincerely hope this helps in some small way.

Jump to this post

@dutchw– Good morning and Welcome to Mayo Clinic Connect. Thank you for sharing your story. I am a mentor for Mayo Connect's Lung Cancer and Lung Diseases. I have an unusual lung cancer called Multifocal Adenocarcinoma. I have survived two types of lung cancer for 23+ years and have never had immunotherapy, although I have had chemotherapy. I am sorry if I have given the impression that I have taken this wonderful drug.

@miriam57; @richcolleen– I have found that many people who have finished their two years on Keytruda are followed very closely with CT scans. I am at a loss to tell you that there are other drugs right now that will maintain you. Keytruda is "Humanized antibodies" This means that they are antibodies from non-human species whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans. I certainly hope that the positive outcomes for many people who have taken this drug will see many more and maybe even a possibility for a maintenance program. I just don't know of any at this time.

The developers for Keytruda limited the study to two years. There was a lot of competition between several drug makers for the success of such a drug. You can read more of this here:
https://en.wikipedia.org/wiki/Pembrolizumab
The reason that I am suggesting that you read Wikipedia about your drug is so that you can see why there was a 2-year limit.

I am very glad that this drug's targeted population has expanded into many cancers.
https://www.keytruda.com/

REPLY
@richcolleen

My Two years are up this year also. My Dr said they will take another look at options as their is new stuff coming every day. Will know they will do the best for me. Otherwise God might want me and that’s another option. Best to you and 🙏🏻 Prayers for you.

Jump to this post

Hi Rich. My question is has Keytruda worked for you, what is the status of your cancer now? My Dr has never told me that going to God was an option. Positive thinking, a “I can beat this” attitude has been very important for me. When my loved ones view me in my casket I don’t want them to say “my, he’s a good looking corps”. Want I want them to say is “my, he must have had one hell of ride”!! Never give up…

REPLY
@merpreb

@dutchw– Good morning and Welcome to Mayo Clinic Connect. Thank you for sharing your story. I am a mentor for Mayo Connect's Lung Cancer and Lung Diseases. I have an unusual lung cancer called Multifocal Adenocarcinoma. I have survived two types of lung cancer for 23+ years and have never had immunotherapy, although I have had chemotherapy. I am sorry if I have given the impression that I have taken this wonderful drug.

@miriam57; @richcolleen– I have found that many people who have finished their two years on Keytruda are followed very closely with CT scans. I am at a loss to tell you that there are other drugs right now that will maintain you. Keytruda is "Humanized antibodies" This means that they are antibodies from non-human species whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans. I certainly hope that the positive outcomes for many people who have taken this drug will see many more and maybe even a possibility for a maintenance program. I just don't know of any at this time.

The developers for Keytruda limited the study to two years. There was a lot of competition between several drug makers for the success of such a drug. You can read more of this here:
https://en.wikipedia.org/wiki/Pembrolizumab
The reason that I am suggesting that you read Wikipedia about your drug is so that you can see why there was a 2-year limit.

I am very glad that this drug's targeted population has expanded into many cancers.
https://www.keytruda.com/

Jump to this post

Good morning Miriam. Thank you for the valuable information. Wow, 23 years, that’s impressive. You undoubtedly are a fighter and an inspiration to us. I’m going to press my Dr to buck the current 2 year limit and try a maintenance protocol. We’ll see what happens. A PET scan in Dec. showed a small hot spot, 1/2 inch size, in my good lung and radiation cleaned it up. I am now cancer free and remaining on immunotherapy/Keytruda 400cc every 6 weeks until June. Keep up the good work.

REPLY

Colleen, my husbands name was Rich, keytruda has kept tumor in check. Never disappeared but shrunk. Nodules in kidneys disappear last scan Dec 18. More cells in both lungs this last scan but very small. When I was on 3 other types of chemo was sick 10 days out of the 21 days. So quite last October and doing fairly well even with the pandemic. My biggest problem is I’m oxycodone which means NO driving. Used to coming and going whenever I wanted to since husband died 4 years ago. Cancer came 1 1/2 years ago. Must say the Lords been good to me.

REPLY
@dutchw

Good morning Miriam. Thank you for the valuable information. Wow, 23 years, that’s impressive. You undoubtedly are a fighter and an inspiration to us. I’m going to press my Dr to buck the current 2 year limit and try a maintenance protocol. We’ll see what happens. A PET scan in Dec. showed a small hot spot, 1/2 inch size, in my good lung and radiation cleaned it up. I am now cancer free and remaining on immunotherapy/Keytruda 400cc every 6 weeks until June. Keep up the good work.

Jump to this post

Please call me Merry!

REPLY
@miriam57

Thank you for sharing this information. Keytruda has been brought to me as an option. My question, if two years is the limit, what happens after that?

Jump to this post

Mine is for recurrent endometrial cancer.

REPLY
@dutchw

Good morning Miriam. Thank you for the valuable information. Wow, 23 years, that’s impressive. You undoubtedly are a fighter and an inspiration to us. I’m going to press my Dr to buck the current 2 year limit and try a maintenance protocol. We’ll see what happens. A PET scan in Dec. showed a small hot spot, 1/2 inch size, in my good lung and radiation cleaned it up. I am now cancer free and remaining on immunotherapy/Keytruda 400cc every 6 weeks until June. Keep up the good work.

Jump to this post

It was Merry, not me Miriam…. but I am hoping. I like the questions and info about the drug. I am interested in the treatment for Endometrial cancer.

REPLY
@richcolleen

Colleen, my husbands name was Rich, keytruda has kept tumor in check. Never disappeared but shrunk. Nodules in kidneys disappear last scan Dec 18. More cells in both lungs this last scan but very small. When I was on 3 other types of chemo was sick 10 days out of the 21 days. So quite last October and doing fairly well even with the pandemic. My biggest problem is I’m oxycodone which means NO driving. Used to coming and going whenever I wanted to since husband died 4 years ago. Cancer came 1 1/2 years ago. Must say the Lords been good to me.

Jump to this post

Sorry for your loss Colleen. I’m sure Chemo works for some people but like you the side effects weren’t worth it to me. I was prescribed oxycodone once but didn’t like the side effects so just use Tylenol. Are you very short of breath? I’m having a heck of a time breathing with even moderate exercise, Dr says it’s because I also have COPD but I wasn’t that short of breath prior to the lung cancer.

REPLY
Please login or register to post a reply.