Keytruda

[snowmom]

I was diagnosed with lung cancer in 2018. I am not eligible for surgery since I have a nodule on my pericardium. I finished my chemo (minimal side effects), now only on maintenance therapy with Keytruda (no side effects).  I am mostly stable with some regression. If all continues to go well I will stop Keytruda in July as I will have reached the recommended number of treatments. Anyone here finished out their maintenance therapy with Keytruda?

[Rose Kaiser]

I've been on Keytruda and Alimta maintenance since April 2019. I wasn't aware there was an end to Keytruda until I read your post. I have my next treatment Thursday and that is one question I will ask my oncologist. 

[Rose Kaiser]

My actual first maintenance treatment of Keytruda & Atlimta  was in June 2019, not April as I stated above. Although, I have been on Keytruda since my first treatment in March 2019.

[sashjo]

I've been on Keytruda for two years now and have fortunately had good results. I've had some side effects but they were treated and none were life threatening. I want to ask my oncologist the same thing. I feel like I would be a nervous wreck without treatment being that my diagnosis is stage 4.  

[Claudia]

I started on chemo and Keytruda in February 2019. I was taken off chemo in May 2017 and only Keytruda ever since My amazing Oncologist told me that I would be on Keytruda for a year after my first clean scan (NED). I'm not there yet bur I'm working on it. Peace, light and great scans to all, Claudia

[snowmom]

Thanks to all who replied. I apologize for the slowness of my response - but it's been a very busy time with lots of good stuff! I continue to do well and will have my 35th Keytruda maintenance infusion on August 5. I've not yet discussed a follow-up program (frequency of scans/blood work etc.) with my doc as I've been seeing the Nurse Practitioners lately. As soon as I have more information I'll let you know. 

Rose - I hope you are doing well. I started on Alimta + Keytruda after I finished 6 or 7 (can't remember) rounds of Carboplatin + Alimta + Keytruda. Oddly oddly enough the dual therapy had more side effects for me than the triple so we agreed to drop the Alimta and I have continued just fine without it. I do have a question for you, In your post you mentioned that you were going to discuss your ongoing therapy with your doc - what did he/she say?

Sashjo - I hope you are doing well. Yes, I was nervous at first, since I know I can never claim a cure because of the nodule on my pericardium, but I'm over it. It was good for me to have some time to live with the idea and discuss it with my doc. I know I will watch myself closely and that I will have a good monitoring regimen in place. Another positive is that, if it becomes necessary, I can go back on Keytruda. Other therapies would also be available to me.

Claudia - Glad to hear you are doing well!

 

[Rose Kaiser]

When I started chemo I asked how long I would need treatment and he said it would be ongoing. I"m still on every 21 days. Had some bad coughing and shortness of breath so had a chest x-ray and there was a new mass that wasn't there 2 months ago. Had a ct scan and bone scan and both were good. I'm being treated for scar tissue from sbrt radiation I had back in January. Specialist put me on prednisone for a couple of weeks along with using an inhaler twice a day. My followup is scheduled mid-July. I was scheduled for a PET scan before all this started and insurance denied the request because of the other scans I had due to the scar tissue. Once we get over this bump in the road, I hope there is no arguing with insurance about having a PET scan. I am very optimistic about one day hearing him say there is no evidence of disease. 

[snowmom]

Hi Rose,

Glad you are doing well. I believe that faith, knowledge, and a positive attitude are important factors on this cancer journey we all share.

I also have been on an every 3 week regimen .  As background, I was diagnosed in April of 2018. My main nodule was at the intersection of all 3 lobes in my right lung. After discussing it with my oncologist and surgeon, I was scheduled for a pneumonectomy (using VATs). The deal was if they found that the cancer had spread they would just take samples for biopsy then pull out. If they found that the cancer was confined to that one area they would just remove the lung. So, once they discovered the nodule in my pericardium they backed off and just took tissue samples for biopsy. The surgery left a bit of a mess (not blaming -- just how it works) so it's been hard to figure out what's there. My scans have consistently shown no change in the size or density of the area in question and none of the nodules they can see are any different.  Everything else (bloods, lung function) is normal to better than normal. I was initially a little frustrated with the "no change" results, but after speaking with my oncologist and the radiologists who have read my scans, we have decided that what we are really seeing is mostly the scar tissue from the surgery.  I have looked at every one of my scans multiple times and have been given the opportunity to ask questions of the radiologists directly.  I am now comfortable that while I may not have the luxury of a "surgical cure" I am in an excellent place health wise.

[Lenny Blue]

Hi Snowmom, ( almost wrote snowman ).

   Stage 4 NSCC left lung , mets to femur & brain.

  16 months on Keytruda & Alimta. Off Carboplatin after 1st two months.

   64, yrs olds nonsmoker. 
 
  Side effects to date; thyroid issues, high & low on meds, rash, itching , dermagraphica, chemo stomach issues on off. Fatigue on off.

 Maintenance x3 weeks.  

 Femur tumor gone. Brain tumor gone. Lung tumor shrunk 75%.

 Staying positive. Now mentor with Cancer Hope Network and Lungevity.

Praying for you !

 

         

[TJM]

Lenny

Curious on your thyroid issues. I have had a rapid heart beat ever since I had a PE and found out my thyroid is out of whack. Put me on beta blockers (which dramatically helped heart rate) and will be getting follow up blood work this week. At the moment that's all I know. No clue on the cause and other than blood thinners for the clot I am not being treated (NED).

So. Hoping you could educate me on your thyroid issues?

Excellent news on your progress and I love the Tee...

Peace

Tom

[snowmom]

Lenny,

Thanks for the prayers! You are now on my prayer list. Sound like you had excellent results! I'm doing well also. It's now been 3 years since my initial diagnosis and I'm doing really well. I finished my maintenance Keytruda regimen in August of 2020. Now on just periodic follow-up. I see my oncologist every 3 months just for blood work and I get a scan every 6 months. I kept my port so I also go in periodically to get that flushed. My last scan was in November 2020 and all was good, ie, "no change." I have another scheduled for May 5 - hoping for the same result. My only side effects have been small white pimply things on my face, chest, and back that come and go. They really aren't bad (just annoying at my age to have a breakout) and I can control them with hydrocortisone cream and calendula oil so I won't complain. Loved your pic! I really believe it's important for us to share experiences, particularly when we do well, as it can lift the spirits of newbies as well as those who are having a hard time. People need to understand that cancer is no longer a necessarily a death sentence.

[Sylvie Horgan]

So the maintenance therapy with Keytruda is every 3 weeks and will last until the ct scan is cleared, am I correct? My husband just finished his chemotherapy but starting on Keytruda maintenance but we are not aware of how long thank you all, GOD bless

[LexieCat]

That would be a question for the oncologist. Most of the time, Keytruda maintenance would be two years, though apparently there is some debate about continuing it longer. 

[snowmom]

Quote

 

The length and dose/frequency of Keytruda maintenance therapy is directly related to each person's individual situation (type of cancer and other factors), your oncologist, and the policies and procedures of the institution where you receive treatment. Just as every cancer is personal so is therapy. Not every patient gets a clear scan. The video-assisted thoracoscopic surgery (VATS) surgery I received to as part of my diagnosis, determined that I had inoperable lung cancer, which is why I went on chemo/immune therapy. The VATS procedure left a bit of scar tissue in my lung,  however, which makes it difficult at times to see much detail. So, in my case we all settle for "unchanged". 

[Good Bro]

My brother (NSCLC Stg4, brain & spine mets, no targetable mutations, neg PDL1, dx 5/'21, age 47) had his first maintenance infusion of Alimta & Keytruda 2 weeks ago.  That was after 4 infusions every 3 weeks of the triplet.  He has shown some response (regression) in many tumors.  Just had targeted radiation on 18 brain tumors last week.  Can't wait for the next MRI to see the success of that.  Really hoping they are gone so that maybe they will let him drive again.

What I am wondering though is the success rate or stories of success with Keytruda for those with no PDL1.  Most of what I have read states that Keytruda is most effective for those with higher levels of PDL1.  Do any of you who have experienced great success on this drug have very low or negative for PDL1?

 

[snowmom]

4 hours ago, Good Bro said:

My brother (NSCLC Stg4, brain & spine mets, no targetable mutations, neg PDL1, dx 5/'21, age 47) had his first maintenance infusion of Alimta & Keytruda 2 weeks ago.  That was after 4 infusions every 3 weeks of the triplet.  He has shown some response (regression) in many tumors.  Just had targeted radiation on 18 brain tumors last week.  Can't wait for the next MRI to see the success of that.  Really hoping they are gone so that maybe they will let him drive again.

What I am wondering though is the success rate or stories of success with Keytruda for those with no PDL1.  Most of what I have read states that Keytruda is most effective for those with higher levels of PDL1.  Do any of you who have experienced great success on this drug have very low or negative for PDL1?

 

Good Bro - I'm PDL-1 negative. My diagnosis (June 2018) was stage IVa primary adenocarcinoma of the lung (T4,Nx,M1a) inappropriate for surgery due to the nodule on my pericardium.  I had my last Keytruda treatment in August of 2020. I continue to do well - due for another CT scan in November.

[Good Bro]

8 minutes ago, snowmom said:

Good Bro - I'm PDL-1 negative. My diagnosis (June 2018) was stage IVa primary adenocarcinoma of the lung (T4,Nx,M1a) inappropriate for surgery due to the nodule on my pericardium.  I had my last Keytruda treatment in August of 2020. I continue to do well - due for another CT scan in November.

Great to hear Snowmom!!!  It really sounds like Keytruda is a miracle drug with maybe better success rates with higher PDL1.  Great to hear that it also looks like it works well regardless of PDL levels.  Keytruda has been out for many years now.  It seems it works better these days though.  Rarely hear of cases where it didn't help whatsoever.  One would think with drugs like these, the Google stats from 5-10+ years ago would start to improve considerably with 5 year survival rates.  

[LexieCat]

2 hours ago, Good Bro said:

 One would think with drugs like these, the Google stats from 5-10+ years ago would start to improve considerably with 5 year survival rates.  

The standard for survival rate statistics is five years--even for easily-cured cancers. They stop counting after that point, to the best of my knowledge. What we can expect to see is an increase in the number who survive five years. The further out you get from diagnosis without progression, the less likely you are to have a recurrence. It can happen, but it's less likely. 

I have about 5% PDL-1. I did great on the triplet (Carboplatin, Alimta, Keytruda), but had progression soon after starting maintenance therapy of Alimta and Keytruda. So Keytruda was not the magic bullet for me, unfortunately,