Immunotherapy
I have vaginal cancer - serous adenocarcinoma. I've been through carboplatin and taxol, and external & internal radiation. I'm supposed to start immunotherapy this next week. Keytruda and Lenvima. Was curious as to anyone's experience with these drugs. How were your side effects? How long before side effects appeared. Appreciate any info you are willing to share. Thanks much.
Comments
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RLynne, not sure how many
RLynne, not sure how many women have been treated with both these drugs so I am sure you can teach all of us something. Immunotherapy has a whole different set of things they are on the look out for besides chemo/RT side effects!
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Lenvima/Keytruda
One of our members, dgrdalton, documented her experience with Lenvima/Keytruda at https://csn.cancer.org/node/321618
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Keytruda and Lenvima
Hi, I have uterine cancer, UPSC (Uterine Papillary Serious Carcinoma). On 2nd recurrence went through useless chemo with Avastin, it seemed the little UPSC things were REALLY pissed and kept my CA-125 up, down and all over, after 6 months of treatment with Avastin as "maintenance" my CA-125 ended nearly where it began. I hated Avastin and changed hospitals. This time Oncologist prescribed Immunotherapy with Keytrude and Lenvima - 2nd week of 1st treatment and it's not so bad. Have very good response to Lenvima so far. Worst side-effect is extreme fatigue, especially after activity and pains. But, seems to be working as I'm feeling better each day. I also had dull headaches above my eyebrows, red face, dizziness and sleep, sleep, sleep. No headaches in two days. Recommend buying device to monitor Blood Pressure. MUCH better than chemo and avastin which I was unable to take after 7 months. My whole body rebelled.
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Keytruda and Lenvima
Lasha12,
Thanks for letting us know how things are going with you while on Keytruda and Lenvima. These are still new therapies to many of us and it's very helpful to read about others' experience with them.
I hope this combination works much better with fewer side effects than chemo and Avastin did for you. Let us know how it goes.
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Immunotherapy Trial
Hello,
I was first diagnosed with EC in November 2020. In January 2021, I had robotic TLH/BSO with sentinal lymph node mapping, para aorta lymph nodes and bilateral pelvic lymphadenectomy. All lymph nodes were clear, cervical stromal invasion and 65% myometrial invasion. Official dx: Endometrial Adenocarcinoma with Squamous Differentiation FIGO Stage 2, Grade II. I completed 30 rounds (28 EBR, 2 Brachy) of adjuvent radiation on April 16, 2021.
On October 8, in preparation for a routine suveilance visit with Radiation/Onc, I had a CT scan due to persistent weakness in my upper legs. (I am, or was, an Over the Road truck driver and was noticing some difficulty climbing in/out of the truck) Well, that routine CT Scan had surprises and the following PET Scan and CT Guided Abdominal Biopsy confirmed that I had 3 nodules of recurrent peritoneal carcinomatosis. WTF?!? No symptoms, no pain, no abdominal swelling...just a kick in the face dx. Enough venting...sorry. Still a bit stunned.
My point is that I'll be taking part in a clinical trial that includes immunotherapy in addition to chemo. Niraparib and Dostarlimab, although, since its a trial, I may be getting a placebo, but I'll try to keep everyone updated regarding progess and side effects.
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I Read Your About Me Page-'Surrounded by Love'
Letsdothis2021
We almost shared December 2020 Surgery until yours was rescheduled to January. My pathology was stage IIIA endometrial adenocarcinoma with 95% invasion and extensive LVSI. I contracted covid in January 2021. What a year, huh! I completed 6 rounds of carboplatin/taxol, 30 external radiation and 3 brachy. WTF and 'a kick in the face' to have this dx with no warning signs at all. Frightening, because I am watching for all these 'signs', some of which I think I imagine.
May this immunotherapy clinical trial be successful for you. No placebo! ((Hugs))
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Update on Lenvima Use
I have been on Lenvima (along with Keytruda) for almost 2 full months. Daily nausea, to the point nothing sounds good to eat, muscle and joint pain that recently started getting worse making it difficult to just get in and out of my car. Last couple of weeks yellow stool (sorry). Last night actual vomiting. So, I decided I wasn't going to take my 8 mg Lenvima dose last night. I woke up this morning less tired, less achy and no nausea. Talked to my Dr today providing my most recent side effects. Stopping Lenvima for 2 weeks. Will start back up,see how quickly side effects return and possibly go to a 2 weeks on 2 weeks off regimen. Right now I'm just happy to feel better so quickly after stopping it.
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how did I miss this comment earlier? LOVE it!
Big props, kudos, and applause to you for making me smile very widely today! I needed a smile. Thank you, you sweet thing you!
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Oh, poor RLynne!
So sorry it's been such a rough time, but so glad there is some relief and a new schedule. Deep breath for you, and some rest from nausea and all this bad stuff. Hugs!
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Hope you are feeling better!
Hope you are feeling better! I generally hesitate to comment on treatments that don't match my own because I feel like I can't truly walk in your shoes. I am on Jemperli and it's so new there are no FDA approved combination therapies. I am hopefully going to have SBRT to treat a tumor in the chest wall causing significant pain so hoping insurance will authorize it. I know there are many trials on-going so if the time comes that I'm being told the Jemperli is no longer effective I will seek those out. My doctor is planning ahead for potential use of a PARP inhibitor since my original tumor had a BRCA mutation. But those drugs aren't approved for EC so insurance won't cover the $14k/month cost (Good Rx!). But here's praying the Jemperli will keep working--slow as it may be--and I can avoid chemo treatments. I admire the women who have to take drugs that make them feel terrible but they keep on fighting!
Cheers,
Deb 1
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Keytruda Without Lenvima
RLynne, I'm sorry to hear about the awful side effects you've been experiencing from the Lenvima. On the link cmb provided above, I mentioned last year that my childhood friend would be starting the Keytruda/Lenvima combination for metastatic endometrial cancer. After a few months, she began experiencing severe side effects, including vomiting and diarrhea, to the point that she was unable to keep anything down. In addition, her blood pressure skyrocketed. They kept adding BP medications until she was up to 5 or 6. During the course of her increasing side effects, her doctor tried reducing her daily Lenvima dose several times. She started out on 14 mg, then went to 10 mg, finally to 4 mg. None of these dose reductions alleviated the side effects, so a number of months ago, her oncologist had her stop the Lenvima entirely. She is still on the Ketruda without the Lenvima, and her last scan showed no evidence of disease (NED). Since she recovered from the Lenvima side effects, her blood pressure is back to being well-controlled by the two BP drugs she has taken for decades, the other side effects have totally resolved, and she is feeling well. When she asked her oncologist (a nationally-recognized gynecologic cancer expert) about eliminating the Lenvima, he explained to her that the Keytruda was the more important drug, at least in my friend's particular situation. Whether monotherapy with Keytruda for individuals with other types/stages of cancer is a viable option would of course need to be explored with one's oncologist.
Be well and good luck with your new treatment regimen.
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Double Posting is Lucky
Lyn70, I'm sorry that you have been going through this as well and hope that you continue to have a positive outcome. :-)
I didnt' realize that I had double-posted, but I will take all the "lucky" I can get..lo! I also have changed my username from "Letsdothis2021" to "TeamT" because clearly I will not have this wrapped up in 2021 as originally thought. ;-)
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We'll be here this year, and next year...
alongside you. This isn't exactly how any of us had envisioned things, but here we are. TeamT is a fine name!
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Uterine Cancer: Uterine papillary serous carcinoma, chemo resistant.
Hello, posted here 10/2021 and here's my update. It's been a back-and-forth struggle, however, just learned my CA125 went down from 1000 to 720 in 3 weeks. Am taking Keytrude with Lenvima which is the standard for the PD-L1 (negative) biomarker. Note PD-L1 biomarkers can be either positive or negative. With negative, Lenvima is the important drug. Started on 4mg Lenvima, which was OK, then told to increase to 10mg Lenvima. With 10mg my CA125 consistently went down 60points every 3 weeks. Side effects were terrible constipation, high bp, bleeding nose, sudden weakness &dizziness, fatigue and terrible dehydration which made my dry sinuses painful. Was told to stop and after 3 weeks resumed on 4mg. Much better! bp not a problem, constipation controlled by 5 teaspoons of organic olive oil with 6-8 Colace daily, I take tylenolCodeine#3 for hip pain which really helps, continuing with Vyvanse I've taken for years which really helps my focus and bp OK. Nausea better, take Biotene mouth spray and XyliMelts (they stick on gums) for dry and bad mouth taste probably from Lenvima when out for walks or shopping. Knew I was better when appetite and energy increased. Noticed that drinking lots and lots of water helped those sudden weak spells, keep reminding myself to drink water all day long. Initially wobbly on walks and chores but the more I'm active, the better it gets - so I push past the initial discomfort. On a organic anti-cancer diet. No sugar or coffee, use Stevia, sometimes Guave. No red meat, actually no meat. Lots of NON-GMO wild caught sardines in olive oil, garlic, brussels sprouts and other veggies and fruits. Simple cereals, organic bread without sugar, NON-GMO Almond milk etc. Sometimes I over-do staying up and doing too much which I feel the next day in fatigue and yucky feeling.
Anyway, with my recent CA125 decrease doctors say it's working. Oh, if especially unwell will skip Lenvima for a day. Usually, in between Keytruda infusions I may skip 1 or 2 days of Lenvima, to give my body a day to refresh. Always feel better the next day and I don't see that it's been a problem in my recovery.
Hope everyone is doing well. Tolerating this so much more than chemo or avastin. It seems to be the right treatment for me, possibly in combination with my anti-cancer diet.
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Thanks for coming back to share your experiences with Keytruda and Lenvima. Not many here have been on that regimen yet, so we appreciate your update. And it's also good to hear the news that you're tolerating the treatment relatively well and have made lifestyle adjustments that are working for you. Hope that it long continues.
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I transferred from another hospital which continued to push Avastin for maintenance knowing full well Immunotherapy was an option. I hated Avastin and knew I couldn't keep on it. Negative reviews of Immunotherapy terrified me and I braced myself for another horrendous treatment. I'm taking very low Lenvima dosage 4mg, I know many take up to 14mg or more. Point is EVERYONE is different and what works for someone might kill another. But, still gotta try, work with it etc. I'm here to say that my Immunotherapy treatment of Keytrude infusion and Lenvima 4mg/daily is A-OK. I have happy days when I feel good and so glad to be alive.
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