Cabozantinib

Hi Jim35 and a very warm welcome to the online community

It must have been very worrying when your wife developed abdominal pain while taking cabozantinib and I'm hoping that since posting this she has had the results of her CT scan.

I don't have any experiences with this drug to share with you but if you type 'cabozantinib' into the group search bar you'll find previous posts on this topic which you could have a read through.

It would be great if you could pop something about your wife's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi,

I started Cabo back in late October 21 and have had increased abdominal pain. Trips to A&E found nothing but just kept getting worse. Even morphine wasn’t touching it.  LFTs are also now raised so have been stopped Cabo for over a week now, strangely enough the abdominal pains have subsided.

Did they ever get to the bottom of the cause of your pains?, would be great to here what the outcome was.

hope alls going well now

regards

dave

Hi Dave,

It’s my wife who was diagnosed with kidney cancer in December 2020 and the prescribed treatment was Cabozantinib which we were told would give her her best chance. She was on and off it for about 3 months but whenever she restarted there were always repercussions. All in all she was in and out of hospital four times during that period culminating in a massive internal bleed which almost cost her her life. She had to have an emergency operation to cut off the blood supply to the cancerous kidney.

The Cabozantinib was then discontinued and has been replaced by Nivolumab immunotherapy treatment which thankfully suits her much better and is actually so far reducing the size of her tumour and its attendant blood clot.

Hope this helps. Cabo is a very powerful drug but it obviously doesn’t seem to suit everyone.

Regards,

Jim

Hi Jim,

apologies for confusion over who was being treated.

been put back on Cabo yesterday but on a 2 day on 1 day off cycle to see if the slight ups and downs will be easier to manage than a longer period of taking it, resulting in a longer off period to recover.

let’s see how it goes.

Good luck Dave, hope it goes well

Hello Jim,

Good story. Can you share if your wife is still on Nivolumab immunotherapy?

I'm also on Cabozan - on and off since around November 2020, very difficult. At first it worked on tumor size reduction, but not any more. I have asked if I can have an immunotherapy and because I had Avemulab in March 2020 I'm not qualified, they say. Don't know where is the hope. Moderna makes anti-cancer personalised vaccine, they say - expensive magic. 

Hi Roman, my wife is still on Nivolumab and has just had her latest treatment. The last CT scan showed that the tumour is stable and hasn’t spread so we’re hoping this continues. She’s also just had a MRI scan to check out some headaches and vertigo attacks she’s had on and off for a couple of years. Don’t know if there’s any connection with the kidney cancer but hopefully the scan will clarify. Because of her reaction to the Cabozantinib that form of treatment never really got going so the immunotherapy is classed as her first line.

Hope this helps. Haven’t heard of the Moderna vaccine, are you considering it?

Hi Jim, 

Moderna is here > trials.modernatx.com/study/?id=mRNA-4157-P101

..but trails are not 'available' and it is very expensive. BTW they've partnered with German company Merk.

It's getting worse with my cancer; this year might be the last one. It doesn't stop now...

In regards to treatment and headache, it isn't natural treatment so it damages the body's systems. The worse part of the cancer treatment is when cancer gets used to a certain treatment and gets resistant.

I hope to get Nivolumab  at least.

I hope you get Nivolumab too Roman, it’s not a silver bullet but at least it helps. Cliched as it sounds it’s one day at a time for us, no other option really.

Hi Jim, I have a question. I spoke to my consultant about this case with your wife. I've asked him: why Nivolumab immunotherapy is used after Cabozantinib that is a Second line of defence. He has said that maybe your wife did not get Nilvomab before. But then I have a question why a Nivolumab which is the First line is used after Second line - Cabozan? I didn't ask a consultant about it as I could not come up with the Question at the time of a conversation. And why I cannot have one(?) Jim, did your wife received first line treatment and what was it? As they refuse me immune therapy