How are people with liver mets doing?
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as always THANKS Candy-678. ❤❤❤❤
In your pocket tomorrow Sadiesservant!!!
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another brain MRI tomorrow afternoon. Results on Tuesday.
I hate scanxiety. Bought some flowers to plant in the morning to bring me joy.
Dee
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Nichole, I had gerd a while back for a few years but not constantly. It was always at night. I would wake up with such pains in my chest, it it would circle around to my back and over my shoulderss. If I sat up in bed bent over a pillow and practically layed on my head it would give slight relief. Then I found out about baking soda. I would put one or 2 tea in water and chug it down. In about 10 minutes the pain would go away. The way I understand it is it neutralizes the acids in your stomach. Unless I eat lots of spicy food (sucks no more pizza) I never get it now.
I would actualy think I was having a heart attack the pain was so bad. I ran this treatment past my primary and she said "well it saves you ER visits looking for a heart attack" lol. I I guess it was ok.
******
Remember when I told you that some of the Fentayal patches just didn't work because of the manufacturer?
Well, I went back to drug.com and read thru hundreds of reviews to find recommendations for the best manufacturer. The original manufacturer doesn't make them anymore (and gosh darn it that's the one everyone one loved) But three companies make the generic. According to actual users, MAYLAN, is the one they say gave them their life back. ( Of course the one I had was was rated #3) Not ONE user liked that one, fit only for the garbage was the common consensus. So my doctor wrote a new script and upped it from 12 to 25. I took to the pharmacist and told them I wanted Mylan only. That was this past Fri. I'll pick it up tomorrow. Pray God it works.
I totally understand about constant 24/7 pain it eats you up. It's not only that you can't move around and do things, it end up you don't even want to.
Good Luck to You And Don't give up. Remember whose child you are.
I would actually think I was having a heart attack the pain was so bad
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AlabamaDee- Pocket duty for your MRI 3/29 and results 3/30.
Hi Snooky.
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Dee- we will be pocket hopping!! Prayers!!!
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Chicagoland, FenBen-- First off don't wait 3 months that's not enough time for it to work. I remember the thrill when I found your thread. You need to take the FENEN, vitamin E, turmeric and Canablis OIL. Well, Frisky (dear sweet frisky), Goldie and I got all caught up in the excitement of a cure and started the ball rolling. Simone was there too and others whom names I forget. GOD we did tons of research in the medical journals, etc. We really thought this would work. I was also on J Tippons web-site. Tippons was so written up in so many publications. I stayed on it 5 months, (the FenBEN) Frisky a bit longer. One by one the others stopped posting too. It worked for none of us. Although the science was all there. PLEASE don't let this post stop anyone else from trying.
We did all sorts of things, mind control. You know if you think something will work and your brain convinces your body it can cure itself. I miss those days. They were so filled with hope, laughter, friendship.
If I reminder correctly, from TIPPONS website, this protocol worked mostly with those who had lung cancer.
Chicago, If you do start a new thread, please don't discard all the FenBen info. There's a lot of documented research on that thread.
Another thing that made this believable was the vetenrians.(sp) Several sources from them saying they had been using this on animals for years.
No need to be afraid of this, none of us got sick from it
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anyone has an idea what has happened to a Goldie girl? Frisky was quite poorly by the end of her writing on forums but goldie seemed to be ok. Have not seen gumdoctor for a while either ..
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Anotherone,
Unfortunately, gum doctor passed away.
Goldie, however, is still posting on some threads -- I see her on "How About Drinking?" quite frequently.
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Thanks for remembering Candy. Not sure when I will get the results. I meet with my RO the following Tuesday and my MO the next day. My MO is usually pretty prompt at getting back to me if the news is good.... He waited until our appointment with the last progression.
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Snooky,
The original thread still exists for whoever is interested-Mods moved it off of Stage 4 only. Three months was an exaggeration-I will probably start FenBen once I have to do IV Chemo. I still follow the Joe Tippens protocol FB page. From what I read, the protocol does not seem very successful against hormonally driven cancers. Right now my cancer still seems driven by estrogen, so my current treatments have been working well. Once that is no longer the case, I'll try the FenBen protocol. Too bad that it didn't work for Frisky, you or Goldie but it is certainly worth trying. It seems pretty low risk.
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My dog got an anal cancer that could not be fully removed by surgery, and it returned in August 2019, with lung mets that caused her great trouble breathing. The vet said not worth doing chemo, would make her very sick and this is aggressive cancer, it probably wouldn't give her more than a month or two.So my husband and I gave her fenbendazole- its poorly soluble so we put it in a pat of butter, and she dislikes the smell so we put the butter pat in a small ball of cream cheese. I fed it to her once daily for a couple of months, and the breathing problem went away. We nursed her through Thanksgiving and Christmas, and then last March I decided to drop the Fenbendazole completely and let nature take its course. The anal tumor is visible and she is fragile and has lost a lot of weight, but she is not in pain and still here, heading into the two year anniversary from when the vet sent her home. The breathing problems never returned. I definitely credit the drug for hitting her lung mets.
That said, I wouldn't take fenbendazole or mebendazole without some evidence of efficacy in a trial. In the lab it functions as a microtubule inhibitor, very much like the taxanes and other chemos we take-and if so it could have synergized with the immunotherapy Joe Tippens was taking in his trial. But nowadays most immunotherapy trials are done as combinations with chemo, radiation or other boosters anyway.
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Thanks, Cure ious. Your post makes sense to me.
Dee, thinking of you today, wishing you didn’t have to have brain MRI. I’m so not a fan of them but it will be a relief if it’s negative.
I’m already in scanxiety for my PET and MRI this week, results on 7th. It’s like it will be a crossroads for me. What choices will I need to make? My friend planted my garden for me, everyone needs a garden fairy. Maybe a tomato from my own garden will make me feel better.
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Dee is your test today? If so, prayers for you!!
Sadie did you also have a test..???
I am trying so hard to keep track I am sorry I was away this week at my sons for Passover/Feast of Unleavened Bread so I may have missed some of you saying you have/had scans. I really love you all I am with you and will try to stay better updated.
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Dee, thinking of you today, too. Fingers crossed for great results.
Grannax, in your pocket this week for scans. I'll have a CT this week, but don't know when yet. I feel the same as you about the crossroads. How nice you have a garden fairy! I'm so grateful for another spring.
Hugs to you all.
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Bliss58 - count me on being in your pocket this week whenever you need it!!!
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Hope& Gratitude, thanks! I'll post when I know more. I'll bet they're still working on insurance approval.
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Thanks Nicole. CT scan tonight (at 9:15 PM ugh... will be awesome trying to sleep with the water they want me to drink). You have had so much on your plate lately that keeping up with threads is the last thing you should be worrying about. We are all here for you too!
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Chicago, Yes I know the original thread is still there. I quit after 5 mons because I was going on IV Taxal and I didn't want any interference from FenBen. Not that I knew there would be, just felt safer that way.
Please don't think that I insulted you in any way, it was not my intention. I was very grateful you started the thread. Who knows, I may give it another go! Oh absolutely, it's worth trying
HUGS
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Thinking of questions for my MO visit. Here is one--
MRI shows small progression in size of my liver mets. Should we do a PET to show activity? 3 of 4 lesions are over 1cm, 4th just below a cm. Will PET pick up these and will the info be helpful? Or should we just look at MRI for size surveillance? I guess if growing in size, then they are active?
Also, should I ask for a copy of the Guardant test before my appointment? I would like to see the results and see if that generates more questions for me. We should have results in plenty of time--- my next appointment with MO is 4 weeks after the test was drawn. Do I ask MO office for copy, or can I call Guardant? I think with the Foundation One studies I called the company and they sent me a copy of the results. But might have been after I got results from my doctor---- too long ago to remember just how it went.
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Candy I would ask for those results yes.
I would also ask about getting a PET...have you made the decision about Y90?
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My wife's oncologist has asked her to come in and give blood for some "molecular tests". This was relayed through a nurse, so neither of us have any idea what this consists of, other than that it is being shipped off somewhere outside the province, and possibly the country, for processing. I pray that it identifies some vulnerability of her cancer that can be exploited. She just had another MRI, so we await results of the latest scan plus all the usual blood tests. The molecular test results, whatever those might be, will apparently take weeks. I'll be sure to ask the Onc just what type of testing this is, next time we have a teleconference with her.
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Candy, a PETCT scan will show if the liver lesions are active. I had both MRI and PETCT.
My oncology nurse called me when the blood genomic results were available and I picked them up.
I had one active, the others dead (hopefully). I had SBRT as it was the only one and 2+cm.
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Hisband11. Is your wife getting a blood biopsy sent for genomic studies? I never heard of the phrase molecular testing. But I am still learning.
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SandiBeach, we have no idea. No one has explained it to us yet. Could be genomic testing I am thinking, but we really don't know. Any kind of testing is welcome.
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Husband11,
My guess is that it's genomic testing. At my center, they have a "molecular tumor board" that considers only patients who have had genomic testing, to make treatment recommendations for these folks.
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Nicole- would you ask for the results before the office visit? I know I want a copy of the results for my own records, but I wish I could look them over before my office visit. I have not decided about Y90 yet, or any of the local therapies. I do not know what therapies my cancer center has experience in or what they will recommend for my case---size of my tumors or where located. I read that some treatments depend on the blood supply to the mets, and the location of the blood vessels. Also location of other organs/body parts (diaphragm for example). I am lightly reading about the various treatments, but not getting too deep into any particular one.
Sandi- All 4 of mine have grown in size. Wouldn't they be active if they are growing, not be dead?
Anyone know the size a tumor has to be to be picked up on a PET? Greater than 1cm or 2cm?
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Husband praying you and your wife get great news!!! I was hoping to see you more in the Verzenio thread but I am already off it and moving on
Candy... I would ask for it before the appointment...also NOTE: my tumors were not connected like most that get Y90.... however after the procedure it looks like the old ones i had cryoblated did have some connection but the 2 she did were not connected (via blood supply) at all...
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Candy you are right..if lesions getting bigger, they must be alive. I think for me, MO wanted to make sure the discrepancies were not in the radiologist readings. The SUV update confirmed suspicions.
I am sorry you have this on your mind. Targeted Rx could be your answer for the ones growing. I was able to stay on Xeloda with the SBRT.
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Candy , lesions of a few mm can be seen by PET so certainly it would work for under 1 cm ones.
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FENBEN..... so for those asking about fenben....you do not need to take the cannibis and Vit E in order for it to work. I am in a FB group for almost 2 years about it. The thing is it will ONLY work if your cancer is caused by a parasite. In some cases people have gotten worse on it and also note that the Mebedazole has been and currently may still be. If you have liver mets and take Mebedazole please be aware of your ALT AST numbers mine quadrupled after only 100. mg after only 5 days.
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