Changing medication

Hi there!

Just read your post and just wanted to let you know... My husband is on Cabozantinib and like you, as it's a relatively new drug in this country, we struggled to find much anecdotal experience of its side effects. 

Everyones experience varies, as with all drugs but our experience has been relatively positive so far. My husband has been on the drug for six and a half months, daily, in tablet form, with short breaks of a couple of days, agreed by his specialist nurse, when toxicity builds up.

His only debilitating side effects have been tiredness, (which could be connected to a combination of factors as he has other medications) and a recent loss of appetite due to stomache ache, which again could be a symptom of the cancer in his stomache, it's difficult to say. He would also have an occasional bout of sickness, weirdly sometimes in the middle of the night but that seems to have settled in the past couple of months.

My hubby had no significant side effects at all in the first six weeks which was great. 

The first set of scans showed a reduction of up to 30 percent in all tumors and stability in his bone mets which the subitinib had failed to control. His second set of scans, at six months, showed stable disease in all areas which I believe is as positive as we can expect in his individual case.

My husbands response has been really encouraging but it is difficult to advise you as ive learned everyones path is so different and I have to stress that I don't have anyone else's story to compare it with and I do feel that his tolerance levels are generally high, he is fifty, so relatively young and as we keep being told, fit and healthy underneath all this horrible cancer. 

I too read up on the side effects and was apprehensive but it was the only choice we were offered at the time. 

I hope this helps, only posted once or twice before but saw your message and I know first hand experience of this drug is on the slim side. Wishing you all the very best with your decision and that someone can give you some information on their experience of Nivolumab. 

Take care x

Hi Daisy ok

I'm currently on Paz and have always been told the Nivolumab would be my third line only and that it's not an option for 2nd even though I've asked about it several times. It really interests me that you've been offered it as a second line. At the moment my second line is likely to be Axitinib, but that could change and I've read positive things about Cabozantinib - but again as first line, not second, so it was good to read about husband's response.

For what it's worth my nurse's response when I asked last about Nivolumab was that by keeping it third line you have somewhere else to go after second line. She made it sound as though you couldn't go back a step. I'm not sure whether I fully understood that, but it might be worth asking. If you switch to Nivolumab and don't respond where do you go after that?

I have a thing about wanting to try Nivolumab, even though I'm stable. It probably sounds daft, but I typically have a ridiculously strong immune system and I just keep thinking that if it could effectively be reset to identify the cancer it might just work. Probably pie in the sky thinking. That said if it's considered the last line, then I'll wait as long as necessary for it!

Will be really interested to hear what you decide to go for and would love to know how you get on.

Lots of luck to you.

Hi again, just wanted to add Daisy ok, that my husbands dose is 40 mgs, when I asked why it was lower than the 60 mgs I'd always read was the starting dose, his oncologist said that everyone that they had put on it had had to have it reduced due to side effects.He added that our hospital now only ever started at 40.

Again, good luck x

Do you mean 400mg and 600mg?

I was originally put on 800mg of Pazopanib in 2013 then reduced to 600mg, which seems a common dose.

( I've  currently been on  a treatment break since 2016.)

Pazopanib is in the same family of drugs, but an earlier version. I was told I'd Axitinib as a back up, should Pazopanib stop working for me.

Hi flOralW0man,

Sorry if I was unclear, I was referencing cabozniatib as in my previous post, my husband is on 40mg.

Apologies for any confusion, x

No, it's my fault for assuming its similarity to Pazopanib (due to name) 

• Good luck to your husband x

Thank you, and to you x

Hi genaevie,

thank you for sharing your husbands experience and he continues to be stable. I have decided on Cabozantinib as I like the freedom of tablets and you can reduce or have a break. I will not know does I will start on until 26th June when I go back to see doctor. I am hoping I will get along with this treatment and then I can keep Nivolumab as a back for future but hopefully not for years! 

I have a feeling my oncologist will start high then if need reduce  

Hi Daisy OK,

NOTE : This info is particular to my wifes cancer and her reactions to her chemo and immuno drugs. Every cancer is different and everyones reactions to their medications is equally unique.

My wife was diagnosed with kidney cancer in May 2012 and had a nephrectomy shortly thereafter. 18 months later, a secondary on the L5 vertebra was discovered which was debulked with rods and bolts inserted to suppport the damaged vertebra. Recently,  additional tumors were found in her paratracheal nodes, 3 further up the spine and the L5 tumor has started growing again.

Margaret has been prescribed a wide range of drugs (sorafinib, sunitinib, axitinib, nivolumab, ipinimumab and more) over the past 7 years, one of which was Cabozantinib. As follows is her encounter with Cabo.

She was originally prescribed 60mg daily but the side effects were horrific. Grossly elevated fatigue and grossly increased nausea which required the use of Ondansetron wafers to prevent vomiting (the core muscle contractions from vomiting wreak havoc with the rods and bolts in her spine). Ondansetron, like codeine and opiods, is the express lane to constipation, so additional Coloxyl with Senna was introduced to counteract this. It became a sad cycle of constipation - dioarrhea - constipation - dioarrhea - ad nauseum. The damage to her L5 nerve root (legs, bowels and bladder) and her reduced cognition of this area only compounded the problem.

After 3 months, her oncologist dropped the dose to 40mg daily. This resulted in an approximately 25% reduction in side effects for the first 2 months, but the toxicity load eventually built up till we were back at square one.

After 2 months on 40mg, her dosage was dropped to 20mg daily. As per the 40mg dose, any reduction in side effects was temporary. Once the side effects manifested themselves again, she was dropped to 20mg daily for 2 weeks and then 4 days off, before recommencing this cycle. This was, in turn, changed to 2 weeks on and 1 week off. After this, it was dropped to 20mg every second day. 

It turns out that, for Margaret, 20mg every second day wasn't providing a therapeutic dosage and she is now in Everolimus (along with Xgeva injections monthly to promote calcium uptake to strengthen the bones).

All up, Margaret was on Cabo for a bit over 9 months.

One of the most frustrating aspects of Cabo, for us, is the simple fact that there is no readily available blood test that can accurately determine the drug level in the blood system. The only practical way to ensure that there is enought drug in the system is to start at a high enough level to guarantee side effects and then scale back until the side effects are manageable. If they scale back too far and you have no side effects, the dosage would then be increased until you do get side effects. Side effects are, sadly, the best way to determine that you have enough in your system.This is one of the few times that a side effect is a desired outcome.

She has only been on Everolimus for 2 months so far (again we find ourselves on the constipation-diaorrhea roundabout but not as severe as when she was on Cabo) but at least there is a specific blood test for this drug, so they will be able to quickly and accurately determine what is the optimum dosage for Marg, without playing the pharaceutical version of rock-paper-scissors.

In summary, you WILL get side effects from Cabo. Definitely fatigue, definitely nausea, probably constipation, probably diaorrhea. They are unfortunately unavoidable but absolutely necessary.

I truly hope Cabo works for you and you can manage the side effects so they don't overly impact your life.

On a brighter note, we met another lady at the Cancer Centre who has been on Cabozantinib since it was a trial drug. For her, it has achieved a 60% tumor reduction and she has not had one instance of a side effect. None. Nada. Zip.

Luck's a fortune. Life's a bitch.

Hang in there sweetheart.

Peace,
Ewen :-)

Hang on in there Daisy!

Good luck with the Cabozantinib.