Hi, all - new here/beginning Checkmate 914 shortly

Michael_B

Hello, ali-

I'm glad to see this forum exists.

I learned about my cancer when I peed a whole lot of blood in early January.  There had been clues for about 10 months but the doctors chalked it up to depression (covid, partial retirement).

Anyway, the scan they took while I was in the ER revealed a 10cm growth on the kidney that extended into the renal vein, inferior vena cava, and up into my left ventricle.

Result - about a month ago I spent 10 hours in surgery while urology and heart surgeons got it all out.  Apparently this is quite the surgical procedure as both surgeons pronounced their work as top 3 in their careers.

The good news is that "the edges are clean."  The bad news - 50% chance of recurrence.  I'm feeling good except for discomfort where the kidney used to be when I move the wrong way (like turning in bed!)

My urologist and oncologist suggested that I enroll for Checkmate 914 as I fit the profile (stage 3, recent surgery, otherwise ok).  Only 25% chance of placebo.  I did the baseline scans and blood work on Monday and begin the treatment on March 8th.

I'm curious to hear from anyone here about your experience in the Checkmate 914 trial.  I'll keep you posted about mine.

Bay Area Guy

Haven't gone through any

Haven't gone through any clinical trials, but I wanted to wish you the best of luck for the future.

Mighty Frog

Hi!

Hi! Michael! 

There is a member here name Manufred, he had a very successful with Checkmate 214 trial. But I'm not sure whether is it the same between 214 and 914 or yours is an updated of 214. U can find and contact him. 

At the moment, wishing you all the BEST..... Be strong

Mighty Frog

 

 

Deanie0916

Haven't participated in any clinical trials

for kidney cancer. You might check out Smart Patients forum I think I've seen some conversations there. Best of luck to you as you recover and press on! 

donna_lee

Yours is a new version of "SSPPPPPRRREEEAAADDD"

Unhappy about the cancer and surgery-Glad they caught it.  I'm amazed they still called it Stage 3 with the places it traveled.  No experience with the drug, but the soreness is common.

Mine was Stage 4, had mets to the liver and set of nodes, and they also checked the gall bladder because of questions about liver.  The degree of surgery in the abdomen and under the rib cage is enough to make you extremely sore.  All the muscles, tissues, and omentum have to be cut, spread apart, "pawed through", cut & clamped, and then stitched back together.  Give yourself some more time to heal.  But it's not fun when you need to turn over and the body doesn't go willingly.

Patience.  Distant Hugs.

donna_lee

Biner

I 3 stage also 3 grade,was

I 3 stage also 3 grade,was offered checkmate and after 2 opinion i declined.You can look in this forum Martin@ somethin like that,he is from Holland and was on trial 914,and unfortanaly with bad side effects drug destroyed his adrenal glands,now he needs take drug for whole life(( 

okk

Hi Michael_B,

Some time has passed since your post, I'm wondering if you decided to do the trial and how you are doing? I just had a left radical nephrectomy 4 weeks ago (my 6.5cm mass was found by chance) and I'm also considering the 914 trial. Anything you can tell me about your decision and experience would be appreciated 🙂

Thanks, and I hope you are well!

Karen

Michael_B

https://csn.cancer.org/discussion/comment/1692506#Comment_1692506

Hi, Karen - sorry to hear about your situation. I did about three infusions in Checkmate 914, occurring once every three weeks, before I started feeling really badly and dropping weight. The doctor in charge ordered a new CT scan which revealed six good-sized metastatic lesions in my liver and an equal number of nodules in my lungs, one of which was especially troublesome. Needless to say, I came off the trial immediately after that, and moved to a Keytruda/Lenvima regimen. Nine months later I'm doing well (tumors and nodules reduced in size and number), with the exception of a new spinal tumor that radiation treatment appears to have gotten under control.

After a long wait, the Checkmate 914 sponsor confirmed that I was actually getting both drugs, no placebos at all.

My situation seems to be a bit more extensive than yours given your description, so it is not surprising that I jumped from III to IV pretty quickly. All I can say about my experience with the trial is that it appeared to fail miserably (but what do I know, I'm no oncologist) and, much less importantly, they never compensated me for travel/meal expenses.

Given my experience, if I had to do it again I don't think I'd do the trial, but one has to consider the possibility that the trial drugs kept a bad situation from being even worse. Assuming you do get the drugs and not the placebo, and that they do as intended, participating in the trial might be a good thing for you.

All the best,

Michael

Michael_B

https://csn.cancer.org/discussion/comment/1692506#Comment_1692506

One other thing - I experienced no side effects during my brief time in the trial.

okk

Hi Michael,

Thanks so much for your reply, I'm sorry to hear you had such a rough time with additional lesions and nodules. My hope is that you have had a positive response to the other drugs and treatment thus far.

As you said, sounds like your situation was different that mine if you had some symptoms for 10 months, etc, but I'm surprised that your health changed so dramatically and quickly by the time you'd only had 3 infusions. We just never know what's around the corner when it comes to our health and especially cancer. This is a whole new world to me and I'm just trying to learn about what my body is doing and what to expect moving forward. "Expect the unexpected!" might be my new motto!

I guess the main thing I'm hoping to get for myself if I choose the trial, is the piece of mind knowing that I will be monitored and have access to scans for quite some time to come. If I don't choose the trial, I will get blood tests & and xray (not a ct) in 3 months, then I'm not even sure what else after that, assuming I continue to be "healthy". Good to know you had no adverse reaction to the drugs!!

Thanks again, be well... Karen

AliceB1950

https://csn.cancer.org/discussion/comment/1692560#Comment_1692560

Hi Karen, May I ask your cancer stage and grade? Just going by the size you mentioned, it would be stage 1 unless it was invasive. I'm curious why you'd be a trial candidate if it was a low stage. This is a never-ending learning process!

tgpath1

https://csn.cancer.org/discussion/comment/1692566#Comment_1692566

Mine was also deemed stage 3 with no spread. It was stage 3 based on the sheer size and how much of my kidney it invaded. While it did not get into the renal veins, it was close before the nephrectomy.

okk

For sure, mine was "aggressive stage 3" as it had gotten to the blood vessels. "Tumour extension into renal sinus,Tumour extension into renal vein or its segmental branches". Ug that doesn't sound good! I'm hoping the trial will give me peace of mind that I'm being watched closer than I would otherwise, and if I actually get the drugs rather than placebo, it might keep a recurrence at bay. 🙏

Karen

m@rtin

here,s an updat from me . after 8 infusions my adrenal glands are broke , i now use hydrocortisol. on previous scans there were many enlarged lymph nodes in resonse to the imuumtherapie , happy back to normal now. i,m stil canser free and do not regret my participation in checkmate 914 . i have a good resons from the imuumtherapie and pray it helped .

best regards

m@rtin

okk

Hi M@rtin!

So sorry to hear about the adrenal gland issue, I hope that is something you are able to manage without much impact on your overall health. Thanks for letting me know you have no regrets participating in the trial and BIG CONGRATS on being cancer free, that in itself is something to celebrate!!! Stay strong, all the best to you! :)

Karen