Ringworm drug for dogs (Fenbendazole) might also cure cancer
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Mmm... dear Frisky, I know you are a very intuitive person and feel a lot of what is happening around and inside of you but let's really hope it is not about Doxil failing... please rest, and your body should come back to normal, I am absolutely sure. Sending sincerest hugs, Saulius
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was going to write just what saulius
said- hopefully you got it wrong this time . I guess the scans will tell, keeping fingers crossed for you feeling betterSaulius , no particular reason to expect anything negative from your wife's scans as far as I can see from your posts. Wishing you as calm few days as they can be .
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Frisky...it sounded more like maybe it from eating and having some wine??? I mean you have been eating really healthy and not drinking so maybe your body reacted to that??
Saulius...Why would you pulse the Metformin?? That is something I believe that can and should be taken every day ....
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Hi All,
Thanks...I hope you’re right and it was the stepping out of my comfort zone that precipitated such major shift...it’s just so scary that things can turn on a dime so quickly....
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Yep, thanks Nicole! We always start everything slooowly, and observe. If after one month everything is good with all liver numbers, etc., we'll start it daily. If you noticed, the dosage is also lower for metformin (500 mg instead of 2x500 mg), Pomi-T (1 instead of 2 capsules), ALA (100 mg instead of 500), Cirdyceps (600 mg instead of 1200 mg), i.e. pretty much for everything... Oh, I see I failed with cordyceps, sorry: we use 1x600 mg/d (I wrote 1x2400 mg/d which is not true). What I have a great feeling and no doubts about is CBD/CBDA, so we use a lot. We make it conservative based on last scans that were good (NED). If scans change, we'll have to hit it hard with whatever we know and have, I believe. She has been through a lot (18 Docetaxels especially, twice lost her hair in 2 years, even nails were bloody and falling off), so I am afraid to ruin something, as now she feels very well. I pray every day and do whatever I can to make this last at least for next 50 years:)P... Sorry for a joke, we need to joke, otherwise what do we have left? Saulius
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Frisky, I hope your experience the day after the Friendsgiving does not mean you have progression. I am glad you had a night to enjoy and feel like your old self again. That is a nice feeling. After Xeloda, and Doxil, I found Navelbine the next least disruptive/most tolerable. Navelbine was even be more tolerable than Doxil as far as side effects are concerned for me. Only issue is it is typically given 2 weeks on / 1 week off requiring more frequent visits to the MO. The infusion doesn't require premeds and is only 10 minutes though. I would see the MO on week 1 and on week 2 he let me skip the MO appointment and just have the infusion. Doxil was great only having to go into the MO every 4 weeks. It was a dream in that respect.
Saulius, hoping for goods results on the MRI. Waiting is the worst.
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saulius, I have not realised your wife was NED. Superb. You are an inspiration. I can understand a bit more your stress at waiting for results now. Hopefully after waiting for results while being NED happens for 20s time you will start to relax a bit
How you feeling now , Frisky ?
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Frisky I had a little family emergency (mom broke her leg) and worked my butt off for a few days fixing it -- I got EXHAUSTED, felt really depleted. I think a lae night and some booze is a stress on physicall wellness even as it is a great move for mental and emotional wellness. Hope you snap back-- & expect you to!
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Thank you JFL, Anotherone, Nicole, and Santa for your feedback...I hope you're right...
It's still very scary to get so sick from just stepping out of my comfort zone for one night. The pain is dull now and manageable with Tylenol, hopefully it won't mean progression.
JFL, thank you for your help...I just wrote my MO about the Navelbine in the event there is progression I want to be prepared...since she will be at the San Antonio symposium.
I hope she goes for it...I don't see why not...it's all such a crap shoot!
here's the Friendsgiving party I went to...well worth the pain...I must confess!
It was like the UN...so many nationalities!!
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Great pic glad you had such a good time!!
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Dear All, thank you very much for your support and prayers, really, you are a bunch of most incredible people...
And so, inner organ MRI results came in yesterday in the evening (only after 10 hours) - all is still NED. Not a small deviation compared to any healthy human, just 10 mm of liquid in left lung, which is most probably, as our MO commented, because of very harsh left side post-mastectomy radiation, which of course might have touched the lung a bit (last time after 12 chemotherapies with Docetaxel she had 21 mm and 17 mm in left and right lungs, and that cleared completely in 9 months), as on 26th of August, just before radiation it was not there. She will decide during our next meeting whether to do a lung CT (which is done annually anyway) or lung X-ray for precaution measures. Well, I am not too worried about that (and if even I am not worried, means probably it is really not worth worrying about). So, now... upper body ultrasound on Thursday, another test to our patience and nerves. Maybe it is a bit too early (only 6 weeks post 50 Gy radiation and skin still healing) but... If ultrasound results are all good, I'd say we are back directly from hell for the 2nd time. For those who do not know our scary story, I think I wrote it on page 65...
Well, last year, when NED report came for the first time, when we left hospital, I asked Sandra to let me walk home last few miles alone, and cried a bit on the way but now... even if ultrasound comes good (knock on wood), I'll be too afraid to be happy and will not let myself celebrate:/ Things are so fragile with this crazy disease. I also wanted to apologize to everyone that I write here about these "good" results here. When I think now, one thing that I would change in my life if I could come back 20 years... I'd become an oncologist. And my first goal would be to make every patient on every occasion leave happier and more encouraged than when they came. Lot's of love and till Thursday,
Your Saulius
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You are so awesome Saulius!!! I am SOOO HAPPY for you both. I totally get what you mean about not wanting to allow yourself to celebrate..etc. I feel that way about starting Xeloda..like I do not want to even DARE to be hopeful that this might work for me
Quick question is your wife taking the fenben?
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Saulius, that is great news. Thanks for sharing it with us. I know how you feel about not feeling joy, if that's what you mean. I find I dread every scan and test result, and even when they turn out stable, I am left feeling drained and depressed. I know I ought to feel joyful and grateful. I give thanks to God, but yet I am still not feeling relief.
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Dear Nicole, thanks again. We do not take FenBen but I bought 3 months worth set (FenBen+VitE) of drugs 3 months ago. Curcumin and CBD/CBDA is in our "menu" all the time anyway. We do not plan to take it now but will start taking parts of COC, if you noticed in my supplement list, to block different "pathways" carefully observing ourselves...
Yes dear Husband, I also thank God every minute but joy... I am too cautious, and really, no relief at all...
Saulius
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Saulius I’m so happy to hear your protocol is working in keeping your wife NED! It’s all very encouraging! May these remedies work indefinitely and allow you both to relax soon! Big hug
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Dear Frisky, thanks a lot! We really have some hope. And we pray for you all every day... There's a way, just will we get lucky enough to find it? Saulius
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Hi Everyone, I try to browe through your comments everyday and I am terribly grateful and elated for all the good news.
I just have to stay off the computer as much as possible because it definitely effects my headaches. I miss you all. My vision is still blurry a lot. The different brand of eye drops are not helping so I guess I'll go back to dr and get a prescription.
I came on to say HAPPY THANKSGIVING TO ALL> I will give special thanks that I've meet each and every one of you
God Bless
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Saulius, praying for good results for your Sandra. So happy to hear your good news and PLEASE, don't ever apologize for reporting good news!
Frisky, what a bummer that you felt so good and had such a nice time, only to suffer so badly the next day. NOT FAIR! I hope you are feeling better.
Snooky, so so sorry about he headaches and pray you can get them under control soon. I wonder if dimming your screen would help?
Well with the huge increase in TM's and scans showing that previous bone mets are worse and I also have new ones, we are starting on Verzenio/Faslodex. No more Xeloda for me. Even tho I have no pain, he doesn't want me to take a turn for the worst, and it happening suddenly. I don't have my report with me, but remember reading that spine is affected T1-T12 and a new spot on my skull, and the top of one of my legs, and the part of your behind that you sit on, but he didn't say tailbone. I chose not to become upset and depressed when I read my TM's and did the same for my scans. Nothing I can do about.
Wishing you all a very Happy Thanksgiving and that you can enjoy it. I am thankful to have all of you in my life. We will be going to our family doctors house for dinner.
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Goldie sorry to read about progression...
you've had an amazing run on Xeloda and you might end up breaking new records on Verzenio.... Progression in the bones while feeling no pains is, however, a new strange phenomenon...that confirms my worst fears about the state of the arts....how much of what they tell us is scientific and how much they make up in the dark as they go along...
Snooky sorry to read about your headaches....have you tried increasing your anti-imflammatories?
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Hi everyone. I took a little break from posting. I don't know about everyone else but I get tired of thinking about cancer every day. I thought by not picking up my tablet for a few days it would help, it didn't.
Saulis, so glad to hear the good news on your wife still being NED. I hope she stays that way for years to come.
Frisky, Glad to hear you are feeling better. Looks like you had a great time.
Goldie, sorry to hear you have progression. You had a very long run on xeloda. I've read some good reports on Verzenio and hopefully you'll have a long run on that also.
Have a Happy Thanksgiving everyone!
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Wish everyone who reads and posts here a wonderful holiday, I hope you all get to enjoy the things that are important to you this weekend, including those for whom this is not a holiday!
Happy for the good news some have shared and wishing the best possible success to the ladies starting on a new treatment path. xox
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Dear All, ultrasound is good, so they see nothing in Sandra. I am too tired morally but... being NED... is a joyful and very scary place at once. Happy thanksgiving to all of you beautiful souls, Saulius
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Saulius, that is great news, and thanks for the update.
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Woo hoo, Saulius. I know this is a relief for you. Wonderful news!
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congratulations Saulius, so happy for you and your wife
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Saulius, so so very happy for your Sandra. That is amazing! How does she feel over all?
Frisky, I'm icredibly grateful for no pain, and also hoping for a good run on the Verzenio. I just wish ONE TIME, I could get good news. I will continue with the FZ, perhaps that is keeping it out of my organs and brain. Ha, wishful thinking I think!
Simone, cancer crosses my mind several times a day and has for 11 years, doesn't matter if I'm on the boards or not!
Has anyone heard from Sonya? Sure do miss her sweet self and hopefully she is doing ok.
We had a wonderful time at our doctors house, lots people and a ton of food. Well, had someone call me in regards to my meds, to let me know the costs. I'm responsible for 5%, well guess what, 5% is like $640.00, then come January when you start your deductable all over, I'm responsible for 20%, do your math people, that's over $2500.00. Who the hell can afford that! He said there are no grants available but will contact manufacture to see if they will help.
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Hi all...I hope you all had a wonderful feast...this time I returned from another Thanksgiving party feeling great....and have managed in the last few days to get rid of that horrible pain under my left breast completely! I'm finally pain free again....so apart from my friends and family, I'm grateful to natural antioxidants and anti inflammatories
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That is great to hear Frisky. I hope everyone enjoys the day.
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Frisky is feeling frisky.....glad you are doing better my friend.
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Good to hear your feeling better Frisky.
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