CSN Login
Members Online: 3

You are here

Failed both Votrient and Opdivo

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am hesitant to post this, because, once I do, it becomes real. Had my three month scan after starting on Opdivo and my cancer has progressed signifcantly - to my liver, to my back deltoid muscles, to the soft tissue in my left flank, extensively in the chest lymph nodes and there is some shadowing in the left temperal lob of my brain. A brain MRI next Tuesday will tell us how significant the spread is to my brain.

Unfortunately, my oncologist has stated my cancer is resistant to treatment.

 

I will be taking the next 3 months away from work to determine what my options are at this point.

 

Prayers are appreciated. Thank you for being here my friends.

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I am so very sorry. I cannot imagine what it's like to hear such bad news. I will hold you in my thoughts and prayers. There must be some alternative medication or treatment. Much love and hugs to you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sounds awful! Have you tried a second opinion? There are even newer drugs/treatments coming on line, perhaps you could get on a trial?

I'm sure you have thought of all these things.

Good luck. Be sure we are all thinking of you

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I will definitely be praying for you & that something will present itself that will work. 

Continue to enjoy each precious moment you can.

Hugs & Love,

Donna~

Shecka1121
Posts: 114
Joined: Apr 2015

I am sorry to hear of your struggle and I will pray for you.  I hope you find a new treatement that works.  

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Are you seeing an RCC specialist?  I would think he would urgently start you on another treatment.  There are 7 other drugs in the arsenal.  Most people do not respond to Opdivo.  Many people will respond to one TKI and not another or MTOR inhibitors instead.  I know you are very discouraged, but I would be pushing to get started on something else quickly.  In the meantime, I will be praying for you.

Kathy

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Hi Debbie. I'm so sorry to hear this news. I went to look at your bio, and there's very little recent information there so it's hard for me to make any useful comments. I don't know when they found your mets or what other drugs you might have tried.

In any case, prayers for you. This I can do. I'm guessing your docs are doing their best.

Wishing you well,

Todd

Yeric
Posts: 65
Joined: May 2015

Have you tried sutent? Make no mistake.  It is a tough drug to take.  However if there is something in the brain, there is not a better medication. 

Do look for an RCC specialist.  Other than us, of course. 

Good Luck

Bobby

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

My current oncologist is recommending Cabozantinib as my next treatment.  I will be seeing my oncologist tomorrow to discuss all options, including a referral to UCSF to inquire on clinical trails.  However, my concern is that if I start Cabo, will I disqualify myself for clinical trials that may help.  We will have to make a decision tomorrow on course of action as my cancer appears to be very aggressive at this point.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

If you can reach the oncologist's nurse at UCSF, I would expect you can get in quickly. They'll need all your medical records and scans. You can usually hand carry those things and get them within a day or two if you are willing to go pick them up. I've done this a couple of times now.

In my experience an RCC specialist oncologist is absolutely worth it. They really keep up on this disease. Dr. Figlin in Cedars/Los Angeles told me that he sees in a day the same number of patients with RCC as a normal oncologist does in a year or two. The field is fast changing and very specialized.

Regards,

Todd

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Going to UCSF is a great idea as long as you can get in pretty quickly.  I think it can take some time to get accepted int a trial so you want to get the process started ASAP since your disease has become aggressive.  Some trials do exclude people based on prior treatments.  Also, some trials won't accept people with active brain metastasis.

I hope that you can see an RCC expert to be sure the right decisions are being made for you.  I know that Nivo and Cabo are the most recently approved drugs, but that doesn't necessarily mean that they are the best choice for every patient.

Bellweather
Posts: 100
Joined: Jun 2013

I am praying that you find an effective treatment, know that you are in my prayers.

Sincerely,

Bell

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I am praying for you, may the new drug brings hope and peace of mind for you

You are in my thoughts and prayers

Forough

Srashedb
Posts: 482
Joined: Dec 2013

Am I remembering incorrectly ? I thought you were doing well on votrient and the onc switched you to optivo. I seem to recall your asking here about that.

af any rate, I think you will get excellent care at ucsf; my husband has been treated there for last 3 years and the docs are great.

Sarah

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Well, my dear, I am sorry for what you are going through. Shock, confusion, disappointment, whatever. No one wants to learn their medication is not helping. However, your post made me think of Fox and how he was told he wasn't going to make it, that certain drugs didn't work etc etc. AND he's still with us, doing much better! Write to him, via direct message.

I hope you get some answers and a new treatment plan. Still..  I know this news is raw right now.

Sending you healing hugs!

jan.

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

After beginning nivo this spring, my first scans showed enlargement of my mets and multiple new ones. I was encouraged to switch to cabo. But I stayed on nivo and now feel as good as I have in a couple years. I know I have to wait until my next scans but how could I not be improving? I'm walking 18 holes a couple times a week. Easily. Gaining weight. Getting stronger.  I believe the first scans showed a "tumor flare" or "psuedo progression" due to inflammation. I may be proven wrong but I am glad that I didn't give up on the nivo too soon.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

How much spread did you encounter?

I went from one mediastinal lymph node with low SUV update and 2 small nodes on my lungs to all of my mediastinal lymph nodes, both left and right hylar nodes, a spot in my liver, 2 tumors on my deltoid muscles, a cluster of tumors in the soft tissue of my left flank, and a "probable" met in the brain - had a brain scan last night to verify and determine how wide spread.  All of this growth within 3 months while on Opdivo.  

Please keep me informed as to how it goes for you while continuing the Opdivo.  I am almost scared to give it another 3 months with so much spread right now

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

my changes would be about the same plus more. I belive many people have switched from nivo due to this "apparent" rapid growth. It is easy to be told we "Failed" nivo and to be encouraged to try what is next. In my case it's been 5 years, I don't want to be on another tki, and I'll take more chances. Most importantly, I am feeling as good as I have in a couple years. I'm looking at my longevity and I'd rather live feeling good than to live a few months longer feeling crappy. It's an easy decision for me. But it is scarey.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I told my husband the same think - quality of life is more important than quantity.  If I can get into a trial, I would like to continue the Opdivo along with another drug.  

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Dreadfylly sorry to hear the news. But please keep fighting! As more experienced guys have advised, there are many other options, second opinions. Scary time, yes, but not a time to give up!

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

My brain scan shows there is only one 1.5 CM mets to the left temperal lobe of the brain.  There is edema swelling for which I am on steroids until we get in to have steriotactic radiation in the next week.  So, the spread is not as extensiv as first envisioned.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Will take every little bit of hope!

Hugs to you! We're hear for you all the way!

Jan

mattva
Posts: 2
Joined: May 2016

I am in the same boat. Got my results today. Mine has spread to back, lymph nodes, liver and exploded into over 35 in my lungs.

I got 5 months from Votrient. I start Opdivo this Friday.

I am very sick and scared right now as my Onc said if they cant get it under control soon It is only a matter of a few mos. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Mattva, you may find Opdivo works very well for you as, thankfully, is has for me and others

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am praying for an adequate response for you to the Opdivo.  We have to stay positive and remember - we do not have an expiration date stamped on us - and everyone is different.  Please visualize being here for your loved ones as you fight this spread - because we have to make our own destiny.  Hugs to you my friend.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I'm not sure how to respond, other than to say I will pray for both of you.  I'm saddened but hopeful that someone can can guide you to some good options.

Donna~

mrou50
Posts: 389
Joined: Mar 2013

I am sorry for your bad news I will remember you in my prayers.

Mark

sledhead
Posts: 11
Joined: Dec 2014

What about adding Ipi (Yervoy) with the Nivo? I have just been recently approved for Ipi through the BMS Patient Assistance Program. My local oncologist clinic worked with BMS and faxed the papperwork to me which I signed and returned. After insurance denial it was about a week for BMS to approve me. Also I have heard of some patients combining Cabo with Nivo or SBRT with Nivo to achieve an apscopal effect. Best of luck to you and sending prayers.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am staying on Opdivo until I am able to go to UCSF to discuss clinical trials.  I will have SRT on the brain mets within the next week.  Thank you for the information sledhead, I will ask my Onc about this combination.  

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Bella,

     I am praying that your Dr. starts you on something else ASAP.  I will be praying that everything is going to be ok, or at least get stablized with a lot of shrinkage!

                Love and prayers for good health!

                Brenda

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Keeping you all in my thoughts and prayers, sending hugs, and hoping for those referrals...!

Subscribe to Comments for "Failed both Votrient and Opdivo"