My Lenvima/Keytruda experience so far - please share yours

dgrdalton
dgrdalton Member Posts: 161

My recurrence diagnosis was Aug 19, 2019. Metastatic UPSC to multiple lymph nodes. Did 6 more cycles of Taxol/Carbo ending 12/30/19. PET scans Jan & Mar indicated some response, but also spread to more lymph nodes. Started Keytrud, 200 mg infusion on 4/6. On 4/7 started Lenvima 14 mg. By day #3 my blood pressure was way too high. I started BP meds and a 3 day Lenvima break. Started Lenvima 10 mg on 4/13. BP is doing well. On day #2 of L-10 mg I started having some diarrhea in AM and mouth sores. Salt/baking soda rinse and eating more bland foods has helped the mouth sores.

My Lenvima comes in 5 day dose packs with 10 mg and 4 mg capsules. I take it with food. Tomorrow I take 10 mg, then 2 days of 12 mg. If I'm doing okay then back to 14 mg.

I had read the side effects and was not really wanting to take this combo, but it was the only option for me. So far it has not been nearly as bad as what I imagined!

Please share if you are on this combo. God bless and stay alert and safe!

Donna D

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Comments

  • Armywife
    Armywife Member Posts: 449 Member
    edited April 2020 #2
    Hugs!

    So proud of your positive approach!  I think most things in my life haven't been as bad as I feared.  I wish I would learn that lesson and fear things less!  Thanks so much for keeping us posted!

  • MAbound
    MAbound Member Posts: 1,164 Member
    Good to hear

    I'm out of treatment, but i remember the baking soda rinses after eating and avoiding acid/spicey foods to prevent mouth sores. Here's a link to a alkaline/acid food chart that helped me know what I could or couldn't safely eat. Maybe you'll find it helpful, too. 

    https://greenopedia.com/alkaline-acid-food-chart/

  • Fridays Child
    Fridays Child Member Posts: 253 Member
    edited April 2020 #4
    Thanks for the information!

    Donna, I'm watching this with interest as it may be a treatment option for me down the road.  I'm glad to hear you're managing the side effects so well.  Due to my advancing age, I'm beginning to look at Medicare options, and oh, my goodness, that Lenvima is expensive stuff.   Best of luck to you and please keep us posted on how you're doing.

  • Donna Faye
    Donna Faye Member Posts: 427
    edited April 2020 #5
    Good to hear from you

    I have been thinking about you and Little Annie as you are both on L/K. I guess it was a good thing I did not start as they have had a time getting my BP to level out. It looks like it is finally settled, but has taken 3 mos.  I did the Magace for 3 weeks and now on the tamox for 3 weeks. I speak to my oncologist on Mon. via teleconf. I really have nothing to report as all is good - no symptoms of any kind and no side effects from M/T. My CT in March showed nothing that could be ID' as tumor - just granulated tissue. After 8 brachys and 26 pelvic rads plus 2 surgeries to clear, I can only imagine what my poor V looks like. When the world is righted again, I will have an internal look-see and another scan. She is very diligent for sure. She still hopes I can do the L/K if needed so I am very interested. Your report shows your strength and what all of us are able to do in order to keep this beast at bay. Do keep us posted and stay as strong as you are.

  • dgrdalton
    dgrdalton Member Posts: 161
    edited April 2020 #6

    Thanks for the information!

    Donna, I'm watching this with interest as it may be a treatment option for me down the road.  I'm glad to hear you're managing the side effects so well.  Due to my advancing age, I'm beginning to look at Medicare options, and oh, my goodness, that Lenvima is expensive stuff.   Best of luck to you and please keep us posted on how you're doing.

    Cost of Lenvima

    That had been my concern also. I am 68 and on Medicare with Silver Scripts as Rx plan. Medicare covers the Keytruda infusion. Silver Scripts approved Lenvima, but my copay was to be $3108.42/month. No way could we afford that. My oncologist office sent me the forms from Eisai, the manufacturer, for financial assistance. They approved me at $0 copay. Meds are delivered by FedEx. So don't worry about costs.

  • Fridays Child
    Fridays Child Member Posts: 253 Member
    edited April 2020 #7
    dgrdalton said:

    Cost of Lenvima

    That had been my concern also. I am 68 and on Medicare with Silver Scripts as Rx plan. Medicare covers the Keytruda infusion. Silver Scripts approved Lenvima, but my copay was to be $3108.42/month. No way could we afford that. My oncologist office sent me the forms from Eisai, the manufacturer, for financial assistance. They approved me at $0 copay. Meds are delivered by FedEx. So don't worry about costs.

    Thanks, Donna!

    That's encouraging, should we come to the point that that's recommended for me.

  • cmb
    cmb Member Posts: 905 Member
    edited April 2020 #8
    Lenvima/Keytruda

    Donna D,

    Thanks for keeping us updated on your experiences with Lenvima/Keytruda, including the cost issue. I, too, will be on Medicare with a drug plan starting next month. It helps to know what options may be available in the future if needed.

    I'm glad that the side efffects have been manageable so far. I hope that continues.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited April 2020 #9
    So good to hear your

    So good to hear your treatment is going well. I remember getting those darn mouth sores during chemo and that hurt!

    I have been concerned about going on medicare and finding a supplemental insurance that would accept me due to pre-existing issues. It sounds like that isn't an issue. Thanks for posting all of your information. It helps in ways you may not even be aware of.

    Love and Hugs,

    Cindi

  • Fridays Child
    Fridays Child Member Posts: 253 Member
    edited April 2020 #10
    Medicare

    What they told me is that if you sign up during your six month original enrollment period, they cannot reject you for pre-existing conditions.

  • oldbeauty
    oldbeauty Member Posts: 319 Member
    edited April 2020 #11

    So good to hear your

    So good to hear your treatment is going well. I remember getting those darn mouth sores during chemo and that hurt!

    I have been concerned about going on medicare and finding a supplemental insurance that would accept me due to pre-existing issues. It sounds like that isn't an issue. Thanks for posting all of your information. It helps in ways you may not even be aware of.

    Love and Hugs,

    Cindi

    No bar to pre existing conditions

    Cindi, as long as you sign up for a Medicare supplement plan right away you cannot be denied entry to the plan of your choice.  I'd urge you to get the best plan you can afford.  My research told me that was the F or G plan (which is same as F except you pay the modest deductible each year). I've since become convinced that G plan is best for us with pre existing conditions.  F plan, my research suggests, will be overloaded with the most ill people due to the fact it is or may have alread closed to new subscribers. Even if you can still get in, I would not, because with only older, more likely to be ill folkls, I think you could expect the annual premium increase situation to be disagreeable.  And then you won't be able to change plans because you are outside the window and could be rejected as high risk.  Also, I'd be very careful about selecting Medicare Advantage without a thorough investigation of what if scenarios.  Especially, end of life care, I've read horror stories of folks on Medicare Advantage who are in hospice but then something sends them to the hospital and they are left with the 20% co pay (of what could be a significant cost) because they are on hospice, which is a different benefit.  As long as you have orginal Medicare, a good Medigap policy and a realistic Medicare Part D plan, I really expect to not incur any substantial expense to my last day.  But you need to do research.  Best wishes, Oldbeauty

  • cmb
    cmb Member Posts: 905 Member
    edited April 2020 #12
    Medicare Medigap versus Medicare Advantage

    Oldbeauty and Friday's Child are correct. If you sign up for a Medigap (aka "Supplement" plan) or Medicare Advantage within the initial enrollment period you can't be denied coverage for preexisting conditions.

    I start Medicare next month and selected a Plan G supplement plan since I was born one year too late to sign up for Plan F. And as oldbeauty noted, Plan F may become more expensive as the people with this plan grow older and incur more health care expenses.

    I did not consider a Medicare Advantage plan as I wanted the flexibility to get coverage across the United States with any provider who accepts Medicare. Medicare Advantage plans cover some services not included in Medigap plans, but have limited networks.

    Also, there was a change in 2019 to Medicare Advantage plans coverage of Part B drugs that could impact cancer patients. See the earlier post " Medicare Advantage and Step Therapy for Part B Drugs" at https://csn.cancer.org/node/320249

  • dgrdalton
    dgrdalton Member Posts: 161
    edited April 2020 #13
    Good advice on medicare

    I agree that staying away from the Medicare Advantage plans is wise. My niece works in home health and she also advises against them. I got on the high deductible F plan. It has the lowest monthly premium and after the deductible pays 100% of what Medicare doesn't. It's similar to a max out of pocket that is not too bad. They don't offer this plan anymore though.

    Today and tomorrow I take 12mg L, up from 10 mg. Blood pressure was a little higher today, but not too high. 
    Thank you MABound for the acidic/alkaline food chart.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    oldbeauty said:

    No bar to pre existing conditions

    Cindi, as long as you sign up for a Medicare supplement plan right away you cannot be denied entry to the plan of your choice.  I'd urge you to get the best plan you can afford.  My research told me that was the F or G plan (which is same as F except you pay the modest deductible each year). I've since become convinced that G plan is best for us with pre existing conditions.  F plan, my research suggests, will be overloaded with the most ill people due to the fact it is or may have alread closed to new subscribers. Even if you can still get in, I would not, because with only older, more likely to be ill folkls, I think you could expect the annual premium increase situation to be disagreeable.  And then you won't be able to change plans because you are outside the window and could be rejected as high risk.  Also, I'd be very careful about selecting Medicare Advantage without a thorough investigation of what if scenarios.  Especially, end of life care, I've read horror stories of folks on Medicare Advantage who are in hospice but then something sends them to the hospital and they are left with the 20% co pay (of what could be a significant cost) because they are on hospice, which is a different benefit.  As long as you have orginal Medicare, a good Medigap policy and a realistic Medicare Part D plan, I really expect to not incur any substantial expense to my last day.  But you need to do research.  Best wishes, Oldbeauty

    Thanks very much for all of

    Thanks very much for all of the information.  My husband will be going on it this November and trying to understand all of the options is daunting. I turn 65 in 2022. I'm hopeful it will be good for me and less expensive than what I'm paying now...... $1200.00 a month takes a significant cut of my retirement to say the least! And even with that pricetag, my colonoscopy cost me an additional $1600.00 this year.

    I will be saving all of the tips you ladies provided for future reference. Smile

    Love and Hugs,

    Cindi

  • jjtrim
    jjtrim Member Posts: 27
    edited April 2020 #15
    Mom starting Keytruda/Lenvima

    Hi Donna,

    Just wanted to chime in and let you know that my mother will be starting the Keytruda/Lenvima combo next week for her recurrent metastatic UPSC.  The doctors haven't given me the exact result (in terms of %) yet, but I do know that she has a low expression of PD-L1.  Apparently, keytruda has recently been approved for endometrial cancer patients who are PD-L1 negative. I'm wondering if anyone else is on this combo with low PD-L1 markers?

    My mother will be started with 10mg of Lenvima with the goal of increasing to 20mg if it is tolerable.  She is coming off of 6 cycles of Cisplatin/Gemzar, a year of Herceptin and the frontline carbo/taxol. Her cancer has waxed and waned since she recurred in March 2019.  We haven't found a therapy that can put this thing iback nto remission yet. UPSC is a beast.

    Thank you for sharing your experience.  I will check in from time to time and let you know her experience so we can continue to add to the body of knowledge that has been built in this discussion group.  My mom's docs are always curious regarding my familiarity with UPSC treatment, side effects, etc.  I tell them that I belong to this group of well-informed ladies!

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited April 2020 #16
    jjtrim said:

    Mom starting Keytruda/Lenvima

    Hi Donna,

    Just wanted to chime in and let you know that my mother will be starting the Keytruda/Lenvima combo next week for her recurrent metastatic UPSC.  The doctors haven't given me the exact result (in terms of %) yet, but I do know that she has a low expression of PD-L1.  Apparently, keytruda has recently been approved for endometrial cancer patients who are PD-L1 negative. I'm wondering if anyone else is on this combo with low PD-L1 markers?

    My mother will be started with 10mg of Lenvima with the goal of increasing to 20mg if it is tolerable.  She is coming off of 6 cycles of Cisplatin/Gemzar, a year of Herceptin and the frontline carbo/taxol. Her cancer has waxed and waned since she recurred in March 2019.  We haven't found a therapy that can put this thing iback nto remission yet. UPSC is a beast.

    Thank you for sharing your experience.  I will check in from time to time and let you know her experience so we can continue to add to the body of knowledge that has been built in this discussion group.  My mom's docs are always curious regarding my familiarity with UPSC treatment, side effects, etc.  I tell them that I belong to this group of well-informed ladies!

     

    Good to hear from you jj! I

    Good to hear from you jj! I hope your Mom tolerates the next round of medicine and gets good results from it. Thanks for always being her advoate. She is lucky to have you.

    Love and Hugs, 

    Cindi

  • dgrdalton
    dgrdalton Member Posts: 161
    JJ Hope you mom does well

    So far the side effects have not been as bad as I feared. I looked through my pathology and did not find anything on PD-L1.

    Today was my Keytruda #2 infusion. I've been back on the 14 mg Lenvima for 7 days. Fatigue is my worse side effect so far. Blood pressure is stable with meds. My lab work was good. CA-125 went from 25.2 last month up to 45.3 this month. But I haven't been on the treatment a full month yet and the last test was done at a different lab which can cause variations in values.

    Everyone stay safe! 

  • dgrdalton
    dgrdalton Member Posts: 161
    edited May 2020 #18
    Had Keytruda infusion #3 yesterday

    My CA-125 went down from 45.3 to 37.3 which is good news! I will have a PET scan in about 3 weeks to see if progress is being made with killing the cancer. Side effects are about the same, just the fatigue seems to get a little worse every day. So far it's not been as I had imagined it might be. I'm still on 14 mg Lenvima. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,010 Member
    edited May 2020 #19
    Good to hear, Donna. 

    Good to hear, Donna.  Continued success with this program.

  • Donna Faye
    Donna Faye Member Posts: 427
    edited May 2020 #20
    So good to hear

    Keep us posted. Sounds good.

  • Forherself
    Forherself Member Posts: 697 Member
    edited May 2020 #21
    dgrdalton said:

    Had Keytruda infusion #3 yesterday

    My CA-125 went down from 45.3 to 37.3 which is good news! I will have a PET scan in about 3 weeks to see if progress is being made with killing the cancer. Side effects are about the same, just the fatigue seems to get a little worse every day. So far it's not been as I had imagined it might be. I'm still on 14 mg Lenvima. 

    That sounds hopeful

    I'm glad to hear your CA 125 went down.  I remember that it was up when you had a recurrence?  So it must be a good gauge for you.   I'm glad to hear you are doing ok.