Vitamin K & Nexavar

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Vitamin K & Nexavar

by Weeze on Mon Jun 01, 2009 12:00 AM

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My Mom has HCC - diagnosed May 1, 2009. She has been on Nexavar for 3.5 weeks and I wanted to share some information I have not seen posted here at all.
There have been clinical trials indicating that Nexavar can be assisted when taken with vitamin K. Apparently Vitamin K makes the Nexavar just as effective at a half dose as if you are on a full dose. I took the study into the Oncologist and he thought it would be good for her to take it.
She has been feeling great, high energy etc. up til a couple of days ago and the hand/foot syndrome hit and it hit hard. She was unable to walk. She is off the Nexavar and we go in to the cancer clinic tomorrow. I assume he will keep her off the chemo for a week and then go back on to a reduced dose.
In doing research about the hand foot thing I read that vitamin B6 is recommended and we got her some today.
I hope this helps someone and look forward to any further advice you might have.

RE: Vitamin K & Nexavar

by AndyH on Tue Jun 02, 2009 12:00 AM

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Could you please provide a url or other information on the study?

RE: Vitamin K & Nexavar

by Weeze on Tue Jun 02, 2009 12:00 AM

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Here is a link regarding vitamin K. If you search on google you will find quite a lot about this. www.nlm.nih.gov/medlineplus/news/fullstory_83273.html We went to the oncologist today and my Mom will be off Nexavar for another few days. He wants her to go back on it at the full dose but to stop immediately if she starts to feel tingling in her hands or feet. Once that sensation is gone to go back on it. Once she has been on the Nexavar for 2 months she is scheduled for a CT scan. I shared the info about vitamin B6 and he recommended she try that to relieve and avoid further hand/feet issues. Hope this helps. Feel free to share any advice you might have for HCC and Nexavar.

RE: Vitamin K & Nexavar

by points00 on Fri Jun 05, 2009 12:00 AM

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On 6/2/2009 Weeze wrote:

Here is a link regarding vitamin K. If you search on google you will find quite a lot about this. www.nlm.nih.gov/medlineplus/news/fullstory_83273.html We went to the oncologist today and my Mom will be off Nexavar for another few days. He wants her to go back on it at the full dose but to stop immediately if she starts to feel tingling in her hands or feet. Once that sensation is gone to go back on it. Once she has been on the Nexavar for 2 months she is scheduled for a CT scan. I shared the info about vitamin B6 and he recommended she try that to relieve and avoid further hand/feet issues. Hope this helps. Feel free to share any advice you might have for HCC and Nexavar.

Where is your mom receiving care. I can personally tell you that the majority of oncologists and local hospitals don't have a clue about treating liver cancer. I would make sure she is receiving treatment from a facility that specializes in liver cancer. I have had HCC for 2-1/2 years and so far I am doing great. I credit it to my doctors at the Mayo Clinic in Rochester, MN.

RE: Vitamin K & Nexavar

by julie_c_6 on Mon Jun 08, 2009 12:00 AM

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Hi,

I was directed to this site from macmillan support via a message about nexavar and vitamin K. My Dad has just started (5 days) with Nexavar for primary liver cancer and we were told to expect 11 months with this drug and 8 without. We are told that we are dealing with one of the best liver cancer consultants we can access (scotland). I am delighted to hear you are doing well after 2 1/2 years and praise your doctors for helping you get there.

My Dad has been told that he is not a siutable candidate for chemo etc. and this drug is our only hope so I am hopefull that we maximise the benefits. Have you done anything else to support this treatment? Do you disagree with using Vitamin K?

It is early days for us regarding side effects but we have noticed several minor ones fairly immediately.

Any advice you can offer as we start this difficult journey would be greatly appreciated. 

Also, mum and dad are due to travel to Disney Florida (this was booked last year and Dad is keen to go) in a few weeks with myself and a young family. Without knowing what symptoms may hit I am uncertain of what to do. Do you have any thoughts?

Hope to hear from you soon

 Julie

 

RE: Vitamin K & Nexavar

by Weeze on Wed Jun 10, 2009 12:00 AM

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She is receiving treatment in British Columbia Canada. Do you travel to the Mayo? What difference do you notice going there? So far we have been happy with the care but your message makes me think we are missing something. What do you think has contributed to you doing so well with HCC specifically?

RE: Vitamin K & Nexavar

by Weeze on Wed Jun 10, 2009 12:00 AM

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On 6/8/2009 julie c wrote:

Hi,

I was directed to this site from macmillan support via a message about nexavar and vitamin K. My Dad has just started (5 days) with Nexavar for primary liver cancer and we were told to expect 11 months with this drug and 8 without. We are told that we are dealing with one of the best liver cancer consultants we can access (scotland). I am delighted to hear you are doing well after 2 1/2 years and praise your doctors for helping you get there.

My Dad has been told that he is not a siutable candidate for chemo etc. and this drug is our only hope so I am hopefull that we maximise the benefits. Have you done anything else to support this treatment? Do you disagree with using Vitamin K?

It is early days for us regarding side effects but we have noticed several minor ones fairly immediately.

Any advice you can offer as we start this difficult journey would be greatly appreciated. 

Also, mum and dad are due to travel to Disney Florida (this was booked last year and Dad is keen to go) in a few weeks with myself and a young family. Without knowing what symptoms may hit I am uncertain of what to do. Do you have any thoughts?

Hope to hear from you soon

 Julie

 


Julie, My mom is back on Nexavar after taking a break for a week and seems to be doing quite well. She did have a severe hand foot reaction. My one piece of advice for your Florida trip is to keep your dad off his feet for as much as possible. I happen to know at Disneyland in CA they provide wheelchairs which should help. (the bonus is you will be able to get in fast lines with the wheelchair!). The reason I say to stay off your feet and limit pressure on hands is that is what most likely brought on the side effect my mom had. I highly recommend the vitamin K. The Dr also has my mom on Vitamin D drops (2 drops per day) and vitamin B6 which may help keep the hand foot thing away.

RE: Vitamin K & Nexavar

by Clarise on Sun Jul 26, 2009 12:00 AM

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My husband has been on Nexavar for seven months and has gone the whole gambit of side affects.  In December his feet were so painful he could hardly walk.  Since finding "Bag Balm" he has no problems at all.  After soaking his feet for fifteen to twenty minutes twice daily, I gently massage a generous amount of the Bag Balm to his feet and then put clean white diabetic socks on him.  Currently he does this himself and his hands and feets are in great shape! 

 

RE: Vitamin K & Nexavar

by Sandyqz on Thu Aug 20, 2009 12:00 AM

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Hi - can you tell me how much vit k you took?  Thanks so much.
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