Cabometyx

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Cabometyx

by Ladihawke on Sat May 21, 2016 11:42 PM

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Hello,

I havn't posted lately, but my husband has been put on a new treatment and I wondered if anyone has too been put on this medication.  It is one pill every day, without breaks like the Sutent..

My husband became verry very ill after a year on Sutent and the doctor put him on a break.  The first three month scan showed no new growths, but his last ct scan showed that his tumors had again started to grow so his doctor has started him on Cabbometyx so we sem to be alone on our journey.  The doctor explained that this drug has receently  been  used on clinical trial for kidney cancer and the rsults were very favorable. 

This is when you really have to have faith in your doctor and have proceeded.  The first scan will reveal the outcome.  So far my husband hasn't been sick at all and we[re cautiously optomestic.  I f any of you are hearing about this protocol, please share your experience.  We had hoped to change to Optivo, but our doctor said there were waiting lists for this drug and he cost was very out there so for now we're trying  this..

Any thooughts?

RE: Cabometyx

by jboth007 on Sun May 22, 2016 01:05 PM

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It is brand new. Not much to go on except it appears to be a reasonable alternative to Opdivo as a second line treatment.http://www.fool.com/investing/general/2016/04/26/fda-approve

Good luck and lets hope for a positive result.

RE: Cabometyx

by Ladihawke on Wed May 25, 2016 06:07 PM

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Thank you so much for yoour feedback.

RE: Cabometyx

by Ladihawke on Wed May 25, 2016 06:54 PM

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I have read the information you so graciously provided and my husband and I are delighted that our doctor has chosen this for us at this time.

I have posted maany times earlier in my husband's treatment, but I hadn't any new questions until now.  My husband has had RCC stage 4 for two years and are holding our own wit no new growths.  My husband did have problems this last year which required the use of Procrit to the tune os $800.00 a month, which was fiiancially  devastating, but his blood finally returned to a proper level and his heart rate also returned to a heaalthier level so we felt that his doctor was right to give him a Sutent break last November.  He was on the verge of congestive heart disease.

It has been wonderful to be Sutent free for several months where h8s appetite returned and he had eenough strength  to go outside and smell the roses, so to speak.  Unfortunawtly, his last scan revealed growth in his tumors so we had to get back into the program of staying alive.  I think we are all somewhat in the same boat, so it is nice to come here and talk to people who udnderstand .

God bless!

The Irwins

RE: Cabometyx

by dsouzjo1 on Wed Mar 15, 2017 12:34 AM

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Hello, My husband has stage 4 RCC and had a Radical surgery of the right kidney done in June 2015. MRI done on December 2015 showed small pulmonary nodules, bone scan was normal (Dec 15, 2015), brain MRI (January 6, 2016) showed no infiltration, and MRI abdomen (Jan15, 2016) showed no metastatic disease .On December 2015, he started on panzopanib (votrient 800 mg/day) and because of tolerability (LFTs and extreme diarrhea and mouth sores, etc. ) he went down to 400 mg/day. No progression but the nodules were still there (some increased in size and some decreased).Because he could not tolerate higher doses of Votrient, he had a port inserted and started my first dose of Opdivo (nivolumab) on November 9, 2016. After 4 cycles (8 infusions), CT/MRI scans (Feb 20, 2016) suggest worsening of pulmonary metastatic disease( 2 nodules with interval increase in size and one with decrease in size) , and interval development of lesions in the lateral aspect of the right fourth rib, and two new hepatic lesions (2.4 X 2.2 cm and 2.1 X 1.7 cm).  He had no adverse effects at all from taking Opdivo, and Labs were all normal. His doctor now suggested taking Cabometyx 60 mg tablets once a day. He will also go for advance Genomic testing. Has anyone done this test and did they find it helpful? 

RE: Cabometyx

by peggyznd on Thu Mar 16, 2017 01:02 AM

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Dear Dsouzjo1,  Sorry to hear tha tyour husband has not had greater response with Opdivo, which is a fairly new drug.  With that, there is still not a lot of 'real world' reporting of how the typical patient responds to it.  THere is some thought, however, that there can be an advantage to staying on Opdivo beyond the first proof of progression of disease, as the benefits of this immune therapy might take longer to kick in.  Frankly, however, no one really knows precisely who will benefit from this or any other drug, so there is a lot of educated guessing and a need to become MORE educated.  

He may benefit from Cabometyx, but again there is even less known about it from general use.  Is there any discussion of the possibility of using highly directed radiation therapy on the liver mets?  THat might bring them down in size and with the Opdivo possibly still having benefit, limit the tumor burden on his system.

As to the genomic testing, it is hard to know exactly what testing he recommends, and what he is hoping to find.  Some testing may indicate a greater chance of response to some meds, but that is still in the 'learning' stage.  However, genomic testing is especiallty in order when someone is diagnosed with kidney cancer at an especially young age, under 50 would qualify, though 46 and under is the recommended age to do so. If you husband has a rarer form of RCC, or had multiple tumors in the kidneys, genomic testing is is order.

Next would be to know how many patients with RCC this doctor has in active treatment right now, and if this is a small number, then you have to look for a second opinion.  This is a rare cancer, with many unknowns, and experience and expertise can make all the difference.

peggyzuckerman@gmail.com

RE: Cabometyx

by dsouzjo1 on Wed Mar 22, 2017 11:37 PM

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Thanks for your response. We were not aware that radiation therapy could work on the liver. I will keep you posted on the genomic testing and the findings. So far no side effects from Cabometyx except for fatigue. He had lots of side effects from Votrient especially extreme diarrhea.

RE: Cabometyx

by peggyznd on Thu Mar 23, 2017 04:26 AM

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Re the radiation therapy.  Do note that I refer to highly directed, not general radiation.  With the first, Stereotactic Body Radiation Therapy, or SBRT, there are multiple beams of light from several directions, not that traditional general radiation.  Beams from many angles, all quite 'light' in single doses, then converge on the spot, and the combined beams provide the proper amount of radiation.  

Naturally you need a specialist for this, but be aware of this different type of radiation.

RE: Cabometyx

by bobinsc on Mon Jul 31, 2017 04:45 PM

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Hello dsouzjo1

I am 60 and have stage 4 RCC like your husband. My kidney taken was the left around 3 yrs ago. It took about a year and it presented in the lungs. They put me on Opdivo for several months and it grew a bit. Next was Votient 800 a day. Like your husband, it was real tough on me so they knocked it down to 400. About 5 months ago the CT showed growth and my Dr put me on Cabometyx. I think I'm on my 4th bottle now and it is trying my resolve.

If I may, I'd like to ask how he's doing on it. I'm sure I'm like most cancer patients in treatment, "sick of being sick".

I certainly hope thgings are positive for him and don't mean to trouble you. If you get a chance I'd just like to hear something from someone that has what I have.

Thanks.....Bob

RE: Cabometyx

by dsouzjo1 on Mon Jul 31, 2017 08:48 PM

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On Jul 31, 2017 4:45 PM bobinsc wrote:

Hello dsouzjo1

I am 60 and have stage 4 RCC like your husband. My kidney taken was the left around 3 yrs ago. It took about a year and it presented in the lungs. They put me on Opdivo for several months and it grew a bit. Next was Votient 800 a day. Like your husband, it was real tough on me so they knocked it down to 400. About 5 months ago the CT showed growth and my Dr put me on Cabometyx. I think I'm on my 4th bottle now and it is trying my resolve.

If I may, I'd like to ask how he's doing on it. I'm sure I'm like most cancer patients in treatment, "sick of being sick".

I certainly hope thgings are positive for him and don't mean to trouble you. If you get a chance I'd just like to hear something from someone that has what I have.

Thanks.....Bob

Hi Bob,

My husband, Joe, is currently taking cabometyx 40mg tablets as well as Opdivo infusions every two weeks. He was originally on 60mg of cabometyx but the hands were really bad and painful so we dropped down to 40mg. The hands are still bad on and off with skin peeling and tender to the touch. He uses an compound cream that was especially made for this by a compound pharmacist. On the whole, he is ok but suffers with diarrhea on and off and, painful hands, and mouth sores. Occasional pains in the rib area also. He is still working full-time and is managing so far. He will go for another MRI in September so we will see if this combo is working for him. He also takes Lycopene tablets, Astaxanthin, and Genestin tablets everyday as this helps with good kidney function. Do you have any side effects from the cabometyx?

I hope that you receive positive results as well! Keep fighting.

Regards!

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