CSN Login
Members Online: 3

You are here

My Lenvima/Keytruda experience so far - please share yours

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

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
Posts: 1101
Joined: Jun 2016

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
Posts: 203
Joined: Jul 2019

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.

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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
Posts: 203
Joined: Jul 2019

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

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

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.

cmb's picture
cmb
Posts: 624
Joined: Jan 2018

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's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

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

oldbeauty
Posts: 297
Joined: May 2012

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

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

Fridays Child
Posts: 203
Joined: Jul 2019

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.

cmb's picture
cmb
Posts: 624
Joined: Jan 2018

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's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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.

jjtrim's picture
jjtrim
Posts: 27
Joined: Mar 2019

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's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

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's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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's picture
dgrdalton
Posts: 150
Joined: Jun 2017

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. 

Forherself's picture
Forherself
Posts: 491
Joined: Jan 2019

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.   

jjtrim's picture
jjtrim
Posts: 27
Joined: Mar 2019

Hi everyone,

Quick little update. After only 1 Keytruda infusion and 3 weeks on 10mg of Lenvima, my mom's CA125 went from 416 to 229. She has had very few side effects – some fatigue but it is hard to attribute that to any specific thing, especially given she has chronic pleural effusions and has recently developed abdominal ascites- both are taking a toll on her. Her BP is still within normal range, no diarrhea or joint pain.
She had her 2nd Keytruda last week and is scheduled for a PET/CT in about 1 month, so we will know more about how effective this combo is, but right now things are looking up.

Hope you are all well. I'll keep updating so we can learn about all of this together.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

Thanks for posting an update on your Mom, JJ.  That sounds promising. Glad to hear she isn't having bad side effects.

Love and Hugs,

Cindi

ConnieSW
Posts: 1545
Joined: Jun 2012

Things are going in the right direction, JJ. Is your mom feeling encouraged?

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

encouraging report. For many of us this might be in our future. Give your mom and yourself a giant virtual hug from me. Always glad for an update. 

 

xxoo

Denise

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

That is great news! So glad she is tolerating the meds so well!

Donna D

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

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

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Keep us posted. Sounds good.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

Great news, Donna! Thanks for keeping us posted.

Love and Hugs,

Cindi

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

The week before my 4th Keytruda, I started having a lot of back, R hip and pelvic pain. Then my abdomen started hurting. Took pain pills for about 4 days. My oncologist and I decided the abdomen pain was from gas. The back, hip and pelvic is where my shingles was and my L5 S1 vertebrae were fused in 2006, so the back pain seems to be if I sit or stand too long. As of today I've had 69 doses of Lenvima (61 of those at 14mg.) I've had diarrhea in mornings, except for constipation a couple of times. My diet has been foods that don't cause diarrhea, heartburn or gas. So many of my favorite foods aren't worth the pain of eating anymore. I seem to have lost a few ounces each day the last 3 weeks which I needed (I'm about 12 lbs. overweight still.) The fatigue is slowly getting worse. I use a cane if I will be walking more than 100 feet or having to stand for long. My PET scan is scheduled for June 29th. Hope to find out if this is working. My CA-125 did go down 8.7 points this last time. But it went down during my chemo as well and then right back up. I'm hoping for good news! This is going much better than I expected! But I was a very active lady, even between frontline treatment and recurrance, so the fatigue is the hardest side effect for me.

Would love to hear from jjtrim as to how her mom is doing.

Stay safe, everyone! Donna D

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

So good to hear from you Donna D. We will all hope for good news right there with you! I hope your pain has become a bit more manageable.  Is there a limit on the amount of Lenvima you can have? Or, do you keep on it for as long as it continues to work?  I hope you can beat some of that fatigue back. That was always the hardest for me during chemo too.

Love and Hugs

Cindi

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

I think the Lenvima is 2 years or until it become intolerable. This combo really affects my memory, especially short term, more than the chemo did. And yes my pain is more manageable. Losing 5 lbs. the last 2 weeks has helped my back. Love & hugs to you, also!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

Donna, good to hear from you, especially since you are dealing with pain and fatigue.  While outside what you consider 'normal' for you, give in to the fatigue and consider rest "restorative".  Thank you for chronicling your experience.  

Forherself's picture
Forherself
Posts: 491
Joined: Jan 2019

You are doing ok.   I have had back and hip pain too.  I had surgery in October.  Now I am doing physical therapy, and I guess I never used my hip muscles because they feel broken.   I am going for my checkup July 16 and I think my oncologist will probably want to have imaging done, but they way the pain moves back and forth and goes away, I think it is really muscle pain and it is awful.  I hope you can get relief from your back and hip pain.  Stretching helps me.  

 

 

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

My 4th PET scan in the past year has finally been good news! My oncologist got the report in just before I left on Monday. I was hoping for the report to post on MyChart, but it hasn't yet. So all I know is that the lymph nodes have either shrunk or have remained stable. So the K/L combo is working. Yay! Still having side effects, but thankfully not all of them at once. The fatigue is constant, but I try to stay as busy as possible and rest often.

Stay safe everyone!

LisaPizza's picture
LisaPizza
Posts: 336
Joined: Feb 2018

Wonderful news!

Forherself's picture
Forherself
Posts: 491
Joined: Jan 2019

Great to hear.  I have been praying for you.   

Fridays Child
Posts: 203
Joined: Jul 2019

Such great news, and so happy for you!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

YES!!!!! So happy to see the great news post!

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 624
Joined: Jan 2018

Donna D,

Such good news from the PET scan! Thanks for keeping us updated.

ConnieSW
Posts: 1545
Joined: Jun 2012

Your news made my day. 

MAbound
Posts: 1101
Joined: Jun 2016

I wish you weren't so fatigued, but it's good to hear that this seems to be helping. May the good news keep coming!

MoeKay
Posts: 313
Joined: Feb 2004

I'm very happy to hear that the results of you most recent PET scan are good!  My childhood friend will be starting on Keytruda and Lenvima soon, so I am going to forward this thread to her.  I hope this combination therapy continues to bring you great results and that your fatigue diminishes soon. 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

CONGRATS!  Wonderful!

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

Thank you for all the kind words! I did have a few rough days last week, but the past several days have been good ones! Going to keep on keeping on and pray for NED!

Stay safe ladies!

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

What a blessing!  I'm so happy for you.  

IzzyF
Posts: 1
Joined: Mar 2018

Good to hear. I will most likely be starting this drug combo soon. I have a lot of reservations but I'm feeling better reading your posts. I'm happy for you! Thank you for your posts. Wishing you the best.

dgrdalton's picture
dgrdalton
Posts: 150
Joined: Jun 2017

My husband and I were in St. Louis Sunday for labs and Monday for an appointment with my oncologist and an infusion. Lab work showed that I have thyroiditis causing hyperthyroidism, but they did go ahead and give me the infusion. She prescribed medication that should slow down the release of hormones from my thyroid. She thinks the Keytruda is most likely causing it, but it could be something else. I’m still very fatigued and have lost some weight, but still have a few more left that I wouldn't mind losing! Diarrhea has gotten worse and my right ankle is swollen and tender, but not enough to concern oncologist much.

Last week my husband put a new starter on the 4-wheeler so I can ride it on the trail in the woods to the river. I got to go twice and sit by the river. It really lifts my spirit! 

ConnieSW
Posts: 1545
Joined: Jun 2012

Picturing you doing that!

MAbound
Posts: 1101
Joined: Jun 2016

I think we could all enjoy an excursion like that in these times! I'm a houseplant to begin with, but even I'm getting a bit stir crazy!! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

Thank you for sharing the update on your treatment.  

I agree with the other ladies, the image of you out and trolling around on your 4-wheeler brings a smile to my face and heart.  Enjoy!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1733
Joined: Jun 2015

I'm glad you were able to get your infusion. Hopefully, the new medication will help not only your thyroid, but your fatigue as well. Love the mental picture of seeing you driving the heck out of the 4 wheeler to get to the river! Take care of yourself and thanks for giving us your latest update!

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2862
Joined: Mar 2013

How are you doing, Donna?

Pages

Subscribe to Comments for "My Lenvima/Keytruda experience so far - please share yours"