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nexavar and vitamin K

ceeflat
Posts: 8
Joined: Dec 2010

Hello...I've described my situation previously on this board. Diagnosed with HCC in
August 2010, large 18cm mass in right lobe of liver with right portal vein branch
invasion, unresectable, not a candidate for Tace or therasphere due to excess shunting
into lungs etc. AFP initially very high at 160,000+.

I started on sorafenib in september at full dose, have maintained that dose at least
98% of the time with varying side effects but none too severe to force discontinuation.
tumor responded well with initial shrinkage down to 12 cm and a significant drop in AFP
levels down to 3500 then 1200 then 160 by the 6th month on nexavar.

After reading about studies concerning nexavar in conjunction with Vitamin K as an
adjuvant, I decided to add daily doses of vitamin K1 (phytonadione) 100 mcg and
vitamin K2 (menaquinone) 50 mcg to my nexavar regimen.

The first month produced no changes in my bloodwork results and the tumor remained
stable; However, after a few more weeks my doctor called and said that my AFP level
had dropped to 4.3, which is normal!
Whether this has to anything to do with the added vitamin K or just a result of being
on full dose nexavar for 8 months I can only speculate.

The nurse who I contacted at the Bayer website says most peoples responses are more
modest, with drops in AFP levels down to a few thousand or few hundred points and
they then fluctuate from there.

My oncologist has presented my case to the tumor board again and now the surgeons
say that I'm a candidate for resection...but they want to remove the whole right
lobe and leave me with only the left lobe which has stage 4 fibrosis.

I'm torn between just staying on the present treatment or going all in with the
surgery....which realistically would give me about a 30% survival chance at 5 years,
but could lead to a possible transplant later on.

I am leaning towards the surgery at this point...but I may wait a while for more
imaging studies....my last MRI showed much more necrosis than previously, but my
doctor says that's not unusual with large tumors, which tend to die from the inside
out as they outgrow their blood supply.

slg
Posts: 200
Joined: Jan 2010

Hi Ceeflat,

Couple of questions:

Have you gotten a CT scan lately to document the size of your tumor?
If it's in criteria for resection is it also for TACE or Y-90/Therasphere?
My husband has been on Nexavar since Jan 2010. He's had three TACE and just had his Y-90 to put him back in criteria for transplant.

ceeflat
Posts: 8
Joined: Dec 2010

Hello SLG...the last mri had the tumor down to 12x5x2cm, down from the orginal
18x10x9cm, so its considerably less bulky; however that includes a lot of necrotic tissue throughout. The tumor board feels that surgery is a better option for me at this point
and since the tumor is not encapsulated it would be better just to remove all or most of
the right lobe. I am inclined to agree, but I may stay on the nexavar a little while
longer and see if it shrinks more to where a wedge resection would suffice.
In any case, transplant is still far down the road as an option, but if the tumor is gone
and does not recur it may not be necessary, at least for now. Good luck to you
and your husband in your fight agains this disease.

slg
Posts: 200
Joined: Jan 2010

Thanks and good luck to you. Keep posting as needed.

EylemTaylan
Posts: 13
Joined: Jun 2011

Dear Ceeflat,

I am glad that I read your comment. After all hopeless comments about HCC and nexavar, your comment is like a drug for me.

My husband has been diagnosed with HCC, in April 2011 and large 7cm mass in left lobe of liver with right portal vein branch invasion, unresectable, not a candidate for Tace or therasphere due to excess shunting into lungs etc. AFP initially very high more than 36 000. He is 36 years old and we are expecting a baby who will come to the earth in December 2011.

Now he has been on Nexavar since 17th of May (more than one month)at full dose. He feels very week and powerless.

I was wondering what side effect you had and how you cope with it? For example did you do any Yoga, relaxation or meditaion...or any speical diet...sport...

I was also wondering these kind of things can help to recover it? We are trying all the possible alternatives, but as you can guess he doesnt enough energy to go out or to do soprts..

What is your suggestions? Can you explain me about the side effects you had...

Thank you for your interest in advance

Best regards
Eylem

ceeflat
Posts: 8
Joined: Dec 2010

Hello Eylem, I sympathize with you and your husband and am well aware of how difficult
it is to cope with such a grim prognosis.

My last bloodwork showed that the AFP level has dropped to 1.0, which is normal.
However, the surgeon claims this may be a sign of the tumor mutating into the type
that produces little or no hormones; I am scheduled for more imaging studies in
August to see what is going on in my liver...he's hoping for further reduction so
that they could do a wedge resection and preserve as much functioning liver tissue
as possible.

As far as side effects, the worst ones I experienced were in the first few months of treatment, especially fatigue and indigestion, hair loss and various skin rashes.

After 9 months on full dosage, I still have some of these side effects, although
not as frequent or severe, but there are days when my energy level is very low;
my uric acid level has also been high lately and I had a pretty bad case of gout
in my knee last week...this may be due to tumor necrosis (hopefully!).

I'm not on any special diet except to limit certain meats and other purine rich foods
in order to keep the gout under control.
I try to maintain a normal level of activity as possible, and even a little bit of
walking, a bike ride or a few minutes at the gym or pool helps me get through
the worst days...your husband should try and maintain a level of activity that he's
comfortable with, and maybe a little more.

When I was diagnosed last July I was also told that I had no options and would probably
not see my first grandson, who was due in February.

Well, I did see my beautiful grandson arrive and now I will be here to see his
Christening next month.

Never give up hope, seek out second opinions, stick with the treatments because the
side effects do decrease after a while; keep in touch with the Nexavar support people
as they can offer a lot of info and help in coping with treatments.

Good luck and best wishes and keep posting updates.

Ceeflat

EylemTaylan
Posts: 13
Joined: Jun 2011

This is kind of you that you replied me back.

It really IS very hard situation for us, but we will never give up and hopefully we will grow up our son together.

It is nice to hear about your good progression.

My husband has pain on tumour region and his back. He feels week but he is planing to join London marathon next year!!!which we were planing to join last year. That´s why he will do more sport if he has no pain. I read him the book about Lance Armstrong (I think you must know him, he is cyclist and metastatic cancer survivor). After this book he decided to fight more and more and decided to join the London marathon. I hope we will be able to do this. (We were living in London and doing there scientific research. As soon as we heart the bad news we moved back to our country.)

I would like to keep in touch with the Nexavar support people, but at the moment I dont know how to reach them. If you know any other, could you let me know?

As you have been doing we will also start Vitamin K supplement. You are taking as a pill and everyday isnt it?

Again thanks a lot for your reply

Good luck and please you also keep updates. I will also keep updating about his situation and hopefully give good news as soon as we receive our first scan results or AFP.

Eylem

slg
Posts: 200
Joined: Jan 2010

Hi Eylem,

My husband has been on Nexavar since January 2010. In the beginning the Nurses at Nextconnect were very helpful in dealing with the side effects. Here is the Nexavar website and a phone number if you are in the US. If not then there is another section for International countries. Good luck!!!

Nexavar. com
1.866.639.2827

EylemTaylan
Posts: 13
Joined: Jun 2011

Thank you very much for the information.

I have one more question!!!

My husband has more pain on the tumour region and his right and left back now. He has to use more pain killer. Do you have the same experience?

Thanks a lot

Eylem

slg
Posts: 200
Joined: Jan 2010

No, actually my husband does not have any pain. He suffers from severe fatigue, occassional diarrhea and weight loss and loss of appetite.

We just found out he has to have an MRI next Tuesday because the radiologist could not read his CT scan that well and he needs to see if he if in criteria for transplant.

I am leaning towards starting him on Vitamin K too.

EylemTaylan
Posts: 13
Joined: Jun 2011

Thank you very much for the reply

Good luck with the scan. I hope you have chance for transplantation. For us now it is far away...

Eylem

Prussiannurse
Posts: 5
Joined: Jun 2011

Common sites of pain with HCC are left or right shoulder pain andupper right quadrant pain. Michael refuses to take anything for pain.

Prussiannurse
Posts: 5
Joined: Jun 2011

Common sites of pain with HCC are left or right shoulder pain andupper right quadrant pain. Michael refuses to take anything for pain.

Prussiannurse
Posts: 5
Joined: Jun 2011

We have gone from processed to totally organic food and Michaels labs content to improve.
He hasn't had any s/e other than a little intermittent brain fog which passed. He has a very positive attitude and refuses to letnthis beat him. Xoxo

EylemTaylan
Posts: 13
Joined: Jun 2011

Sorry if I disturb you, but I was wondering something.

Some people say that they use only nutrients, which are commercial, with nexavare.

Did you also use any Nutritions or not?

My husband is eating normal food. Less food but more organic and handmade.

Some suggest me some commercial Nutritions but I couldn't sure.

Thanks a lot

Eylem

AEI
Posts: 16
Joined: Mar 2011

Hi Eylem,

I too, am sorry you and your husband are battling this disease, especially at his age. My husband was diagnosed last summer when he was 59, with an unresectable 7cm tumor and is said to not be a candidate for a transplant. He started the Nexavar in January of this year. He was on a trial that combined the Nex. with Avastin, of which he was pulled from, because of side effects and no positive results. We just had a check up this week, no CT scan, just lab work, and his blood work was good and liver function had improved over the last time.

From what I have read on this very informative forum is that everyone seems to have a different way of fighting this beast. Currently, our doctor has him on 400mg of Nexavar, and we have been supplementing that with the Vit. K- in food form. I read that one cup of boiled spinach has 888mcg. of vit. K as opposed to one pill which is 100mcg, kale is even better. Our onc. didnt want him taking the pills, but said obtaining it through food was okay. Here is a link for a very good chart http://whfoods.org/genpage.php?tname=nutrient&dbid=112
We also have integrated Milk Thistle, Bupleurum, Tumeric, Maitake mushroom, Ginger, and Avemar (Oncomar), D-3 and Oncoplex (broccoli seed extract), and Resveratrol into his daily routine along with a vegetarian diet - no sugar, or dairy and as organic as possible. Also, once a week he has acupuncture to help with the fatigue and keep the toxins moving out of his system. It has been difficult maintaining this regime both time-wise and financially, but we feel that for us, it is the best way. In the meantime, his Drs. are also looking for new trials and or forms of treatment for him.

Exercise is also a big part of his regime - walking a couple of miles a day and riding his bike. No matter how bad he feels ( during the trial he felt pretty bad some days) he would get his exercise in. We believe also helps keep the toxins moving and is good both mentally and physically. The fatigue and weight loss are the worst sides that he has. Keep hanging in there, try to enjoy every day, and try to keep a good, positive attitude (hard to do sometimes - I know).

Ann

EylemTaylan
Posts: 13
Joined: Jun 2011

We will also try vitamin K1 and 2....

Thanks a lot once again!

Prussiannurse
Posts: 5
Joined: Jun 2011

He takes 6000 IU's of Vit D3 for improved liver function. He takes fish liver oil2 caps daily and omega 3-6-9 2caps a day. Colic acid 400mcg daily and multivitami . About to add vit k to his nexavar. Xoxo

EylemTaylan
Posts: 13
Joined: Jun 2011

May be I missed it but I didnt understand what his problem is!

EylemTaylan
Posts: 13
Joined: Jun 2011

Can I ask how is your husband´s treatment going?

EylemTaylan
Posts: 13
Joined: Jun 2011

Can I ask how is your husband´s treatment going?

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