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Cabo - maybe these tips will help someone..

tamaven01's picture
tamaven01
Posts: 21
Joined: Feb 2016

I was treated with Sutent and Opdivo which only worked for me for a short time and then things got quite a bit worse.  I then switched to Cabo and within days felt better, and started healing.  My scan after 8 weeks showed significant decrease in my tumor sizes and my back mets pain almost went completely.  

 

I found a few things that made a big difference for managing side effects. I realize we all respond differently to these drugs but if any of this helps someone, I'm very happy share.

First of all, I set my cabo pill out at night and wake up and swallow it about 3am when my stomach is completely empty and I'm a few hours away from waking up and eating breakfast.   I think that has made things on my stomach a lot easier.   I take all of my blood pressure medicine and morphine before I go to bed, so again, I take cabo completely on it's own.  Also, I was in the habit for a while of taking a nausea pill (ondansatron (sp?) is my favorite) with cabo in the middle of night as necessary and this seemed to stave off the little bit of diarhea I had and allowed me to eat a great breakfast in the morning (as my stomach felt settled).

I did get hand and foot syndrome for a couple weeks, until I figured out how to deal with that.   My hands just felt a little sensitve, but feet got a few blisters if I wasn't careful to wear socks during the flare up.  To get end the flare up, I put lots of lotion on, I bought "ice socks" off of Amazon to ice my feet while I elevated them in the evenings (or a couple times a day during the flare up).  I also found that you can mix organic henna powder with water to form a paste and "paint it" on the bottom of your feet and it worked really well to end the flare up (this is a technique they used in a clinical trial in Turkey that I found).  

Small meals work best, fried foods and spicey foods haven't worked well for me at all.    I have a problem with a very low appetite so I met with a marijuana doctor that formulated a so called "1:1 spray" which is an olive oil based cannibus spray that does all kinds of great things for me.  It helps me sleep at night with no grogginess, helps with stomach upset and back pain, and increases my appetite.  I did a lot of research on this and only moved forward when I was comfortable, as I was not interested in being "high" at all, so I started with tiny little doses to build my tolerance and only take it at night.   

As a final note, if you are taking pain meds for bone mets and have constipation as bad as I do, I found the answer for me and it has been fantastic.  I get a hydrotherapy colonic once a week at local spa.  It works like a charm to get things "totally moved" once a week and has completely done away with my constipation side effects.   My energy level is better and my lower back pain due to constipation is completely gone. 

I hope some of this may be helpful and I am happy to answer any questions about what I listed here. 

God bless and love to you all.  

Tamera

 

 

 

 

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

the correct minimal dose that is effective is my best tip. 40 mg every other day works for me. I may need to skip an additional dose or two every month.

tamaven01's picture
tamaven01
Posts: 21
Joined: Feb 2016

For now I'm doing 60mg a day and it's been going well but then I've only been on it since April.  I know you post often and I'll go back and look too, but how long have you been on cabo for again?  I'm hoping this is my long term plan as I feel so good on it. 

 

 

 

tamaven01's picture
tamaven01
Posts: 21
Joined: Feb 2016

I have discovered there is a correlation between my taking my cannabis spray (25 mg daily of 27% THC spray) and my ability to tolerate cabo.  Have you discovered that as well?  I know you said you take cannabis, and I've figured out that whenever I don't take my spray I get very queasy, nauseous and end up vomiting my cabo.  What are your thoughts on that?  I'm anxoius to hear what you think.  I wonder if other people might benefit from this info.  Also, how long have you been on Cabo and what part of the country are you in?  My doctor was curious where you are being treated. 

Looking forward to hearing back!

Tami 

 

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

my first year of cabo. I'll ride it as long as I can.

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