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After Keytruda, what's next?

Posted by liz8716 @liz8716, Aug 28, 2019

@merpreb ...Hi, my name is Elizabeth. 31 yrs old.I was diagnosed with stage IV nsclc in April. I saw your story on here and it has given me hope. I'm currently on keytruda. Unfortunately my oncologist at this time says there is no cure and that keytruda can only be administered for 2 years. That she is only helping me live longer at this point because there is no cure. I did have taxol and carboplatin (4 rounds). My tumors have shrunk. But when I ask the dr "what next after 2 years of keytruda she says we'll wait and see. It's sort frustrating. I have to ask. What was your treatment?? Because the 5 year mark almost sounds impossible from what my dr states. Or if anyone else here knows of any new treatments.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

liz8716 | @liz8716 | Sep 2, 2019
In reply to @2onlow8 "@liz8716 have you had molecular testing done? Foundation One? This could unlock some helpful keys to..." + (show)
@2onlow8

@liz8716 have you had molecular testing done? Foundation One? This could unlock some helpful keys to future treatment possibilities.

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Honestly I am not sure exactly the names of testing that have been done. This is a good question I can ask my oncologist. Sometimes I don't know what to ask. Thank you

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Merry, Alumni Mentor | @merpreb | Sep 2, 2019

@liz8716- Good morning. This must be very scary and confusing for you. Many people, including myself have wondered what questions to ask. One thing I will encourage you to do is to get a second and maybe 3rd opinion. Get copies of all of your blood work, treatments and chemo infusions. I don't think that you have told us what kind of lung cancer you have. Different types of cancers work better than others with Keytruda but it is showing a lot of promise and research is extremely strong for lung cancer. There have been a lot of improvements in this area with new drugs and new treatments.
When I got my first cancer 5 years also looked like it was unreachable. But it's there. And it's hard not to think about it. And it's almost impossible to think about nothing else!
I have had both chemo and SBRT. I had navelbine and cisplatin. That was awful. I had chemo twice a week for 4 months. SBRT is:Stereotactic radiation therapy. Stereotactic radiation therapy, also called stereotactic external-beam radiation therapy and stereotaxic radiation therapy, is a type of external radiation therapy that uses special equipment to position the patient and precisely deliver radiation to a tumor. (Wikipedia).
Do you have more than one major hospital in your area? Are you healthy enough to travel to seek a second opinion?

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2 replies
Merry, Alumni Mentor | @merpreb | Sep 2, 2019
In reply to @merpreb "@liz8716- Good morning. This must be very scary and confusing for you. Many people, including myself..." + (show)
@merpreb

@liz8716- Good morning. This must be very scary and confusing for you. Many people, including myself have wondered what questions to ask. One thing I will encourage you to do is to get a second and maybe 3rd opinion. Get copies of all of your blood work, treatments and chemo infusions. I don't think that you have told us what kind of lung cancer you have. Different types of cancers work better than others with Keytruda but it is showing a lot of promise and research is extremely strong for lung cancer. There have been a lot of improvements in this area with new drugs and new treatments.
When I got my first cancer 5 years also looked like it was unreachable. But it's there. And it's hard not to think about it. And it's almost impossible to think about nothing else!
I have had both chemo and SBRT. I had navelbine and cisplatin. That was awful. I had chemo twice a week for 4 months. SBRT is:Stereotactic radiation therapy. Stereotactic radiation therapy, also called stereotactic external-beam radiation therapy and stereotaxic radiation therapy, is a type of external radiation therapy that uses special equipment to position the patient and precisely deliver radiation to a tumor. (Wikipedia).
Do you have more than one major hospital in your area? Are you healthy enough to travel to seek a second opinion?

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@liz8716- Here is a list of questions that Ihave used my self from National Coalition For Survivorship:
Essential Questions to Ask Your Doctor

What information do I need to help me make a decision about treatment?
What information do you use to make treatment recommendations for me?
What are your realistic goals for my treatment?
What are the chances that I can be cured?
What are my chances of a long-term response with good quality of life?
Are there clinical trials available to me?
How will I feel during treatment? Will I be able to work?
Take care of my family? Travel? Be around young children?
What help will I need in managing the side effects of treatment? When and for how long?
Should I consider a second opinion regarding my diagnosis and treatment?
Are there different approaches to treating my kind of cancer?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 2, 2019

Hi @liz8716, I'd also like to add my welcome. Your question about what next after Keytruda and information about new treatments has also been explored by members in these related discussions on Connect that you may wish to read:
- Stage IV lung cancer, what treatments work for you? https://connect.mayoclinic.org/discussion/saying-hi/
- Stage 4 inoperative squamous NSCLC, now on Opdivo last line Tx https://connect.mayoclinic.org/discussion/stage-4-inoperative-squamous-nsclc-now-on-opdivo-last-line-tx/
- Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

Merry has posted great questions to ask your oncologist. Will you be seeing her again soon?

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liz8716 | @liz8716 | Sep 6, 2019

@coleen young. I see her again next week. I'm definitely going to ask about molecular testing. All I know now is that it is a squamous noon small cell lung cancer. Also that I have a very high pdl1 level. Things just seem hopeless at times because every where I read that long term survival rates are not good

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1 reply
liz8716 | @liz8716 | Sep 6, 2019
In reply to @merpreb "@liz8716- Good morning. This must be very scary and confusing for you. Many people, including myself..." + (show)
@merpreb

@liz8716- Good morning. This must be very scary and confusing for you. Many people, including myself have wondered what questions to ask. One thing I will encourage you to do is to get a second and maybe 3rd opinion. Get copies of all of your blood work, treatments and chemo infusions. I don't think that you have told us what kind of lung cancer you have. Different types of cancers work better than others with Keytruda but it is showing a lot of promise and research is extremely strong for lung cancer. There have been a lot of improvements in this area with new drugs and new treatments.
When I got my first cancer 5 years also looked like it was unreachable. But it's there. And it's hard not to think about it. And it's almost impossible to think about nothing else!
I have had both chemo and SBRT. I had navelbine and cisplatin. That was awful. I had chemo twice a week for 4 months. SBRT is:Stereotactic radiation therapy. Stereotactic radiation therapy, also called stereotactic external-beam radiation therapy and stereotaxic radiation therapy, is a type of external radiation therapy that uses special equipment to position the patient and precisely deliver radiation to a tumor. (Wikipedia).
Do you have more than one major hospital in your area? Are you healthy enough to travel to seek a second opinion?

Jump to this post

@merpreb - good morning and thanks for reaching out. I have stage IV adenocarcinoma of the lung. I also have tumors in my liver and it is also in my bones. I had a tumor in my ovaries that completely went away after 4 rounds of taxol and carboplatin chemo. My dr. Stated she stopped chemo because tumors shrunk and that were would just continue in keytruda. Never being a smoker before this news came as a complete shock.

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Merry, Alumni Mentor | @merpreb | Sep 6, 2019

@liz8716- Good morning Liz. Liz so many cancer give poor survival rates. Don't pay any attention to them. They are based on a whole populations. Cancer is an individual, personal disease and tons of people survive lung cancer, myself included. My husband has quoted this many times for me. "Probability is not prediction"
I just got your post addressed to me. I'm glad that your tumors will continue to shrink. Do you know how much they have shrunk?

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yousif41 | @yousif41 | Jun 29, 2020

Hi Liz, I understand how you feel, it is hard when you don't have answers. My name is Yousif, I am 65 yrs old & I was diagnosed with stage IV nsclc 2 years ago with 2 tumors [lung & hip]. I had 16 radiation sessions & after getting the results of PD 1 test I started with Keytruda, my last infusion is next month July 2020. My Scans don't show any tumors any more but I've been advised to continue with Ketruda for another year [double dose every 6 weeks].
I live in Dubai, where I get my treatment but I also consult Professor Popat at "The Royal Marsden Hospital-UK".
Just hang in there & continue with your treatment & in the meantime if possible get another professional opinion.

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richcolleen | @richcolleen | Jul 7, 2020
In reply to @schmeeckle64 "Hi Liz. I'm on Keytruda as well. As this time that's the only treatment I've been..." + (show)
@schmeeckle64

Hi Liz.
I'm on Keytruda as well. As this time that's the only treatment I've been taking. My oncologist never said anything to me about only being on Keytruda for only 2 years. I'm going to ask next time I go in. Everyone is different keep smiling and keep fighting. Prayers

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Question to you or anyone one Keytruda. This is Colleen I have stave 4 lung cancer unbeatable which I did 3 types of chemo and Keytruda for 7 and half months. The chemo made me so sick I quit the chemo. Since than (December)I have been on Keytruda only. In May I had swollen fingered, wrist, hand, neck and spine which I could not move. No strength. June 2nd my Mayo Dr. took test for rheumatoid arthritis which she taught it was. Had me go to primary Dr here which I did. She did Xrays and test and taught it was Arthritis that was inflamed Or Soto gout. And agreed with Mayo dr that I should be put on pedistone. Miracle drug. After 10 days was almost normal but after 6 days was back were I had to go on another 10 days. That was three days ago and started back again. Has anyone had this happen?

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1 reply
Merry, Alumni Mentor | @merpreb | Jul 14, 2020
In reply to @richcolleen "Question to you or anyone one Keytruda. This is Colleen I have stave 4 lung cancer..." + (show)
@richcolleen

Question to you or anyone one Keytruda. This is Colleen I have stave 4 lung cancer unbeatable which I did 3 types of chemo and Keytruda for 7 and half months. The chemo made me so sick I quit the chemo. Since than (December)I have been on Keytruda only. In May I had swollen fingered, wrist, hand, neck and spine which I could not move. No strength. June 2nd my Mayo Dr. took test for rheumatoid arthritis which she taught it was. Had me go to primary Dr here which I did. She did Xrays and test and taught it was Arthritis that was inflamed Or Soto gout. And agreed with Mayo dr that I should be put on pedistone. Miracle drug. After 10 days was almost normal but after 6 days was back were I had to go on another 10 days. That was three days ago and started back again. Has anyone had this happen?

Jump to this post

@richcolleen- I am sorry that I didn't see this sooner. Different chemicals can really wreak havoc on us, right? Are you still on prednisone? Did you get a definite diagnosis of RA?

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