My Lenvima/Keytruda experience so far - please share yours

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/

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 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.

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

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

TeddyandBears_Mom said:

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

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

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, Donna.  Continued success with this program.

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. 

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.