Ringworm drug for dogs (Fenbendazole) might also cure cancer
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Husband I've tried all sorts of mushrooms including the maitake extract, to no avail.
The problem was the toxicity of the chemos...I'm feeling so much better now...OMG I had no idea how much the various treatments had changed me..
I'm currently taking medicinal mushrooms but a TCM preparation, the Liu Wei Di Huang Wan, and an extract the Fu Zheng Support Formula, that affects my energy levels...
Simone thank you for your interest in my wellbeing...I was feeling like a zombie vegetable while undergoing Navelbine, I could not gather enough energy for support or encouragement....it feel so good now to be normal again, like the good old days before my diagnosis....
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Oh, my dear Frisky, it's so good to hear from you. And that your mood is high. We need that hope.
Geese, I had written a novel here but it went poof. I'll try again tomorrow.
Frisky you're gonna make it. Tenacity. You're not a quitter. Hope you drag all of us along with you!
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snooky dear I have a whole month before my next appointment with my mo to discuss what's next...right now I have no idea of how I can be treated without suffering from blood degradation and possibility of deadly infections...hopefully I'll figure something out...
Meanwhile I'm downsizing from my huge three bedrooms apartment, giving away stuff, donating to charities, with the hope that if I catch a break and I'm strong enough I'll be able to return home to Italy where I belong...it's been great living and working here, but now I'm gettready to enact what I had planned before my diagnosis ruined everything....
Ps: MSK opened a new building three weeks ago. I was sent there to get a sonogram...it's the size of a skyscraper and they have spared no expense, they must be expecting lots of patients. The waiting area is so vast and comfortable, they give you an electronic devise that lets you know when they are ready for you, it would be otherwise impossible to find anyone. Their coffee machine makes the best cappuccino I’ve had in this city! ITS FUTURISTIC AND LUXURIOUS....with views of the East river...amazing fkng place! They are losing the war on MBC but their German architects will surely win major design awards
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Saulius,
I hope things are fine with your wife. Any news regarding that blood test?
I have a question for you. In your research or visits to doctors, have you ever come across hyperthermia as a treatment for cancer? I take it that it's being used in some parts of Europe (I think for sure in Germany) along with chemotherapy.
The reason that I'm asking is that I live in Maryland, and there is a doctor at the University of Maryland Medical Center who is European (perhaps Croatian?) who heads up their translational radiology department. He is out of the country right now, but I wrote him an email and asked if they are using this treatment only with folks who are on chemotherapy (I am on Ibrance) or if they are doing it as a sort of free-standing treatment. Hopefully I will hear back from him some time next week.
Anything you know about this would be appreciated. Thanks!
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They do loco-regional hyperthermia here in Canada. It tends to be Naturopathic Doctors. They say it works best combined with some sort of chemotherapy or radiation treatment.
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BevJen, I talked to that man. HE IS A DOLL. I emailed him and he got right back to me and sent me his cell phone.
Hyperthermia is fantastic against cancer because cancer cells die at temps that leave healthy cells fine. If a cancer cell is heated to about 109 degrees for about an hour, it is very likely to die or to be badly damaged, but a healthy cell does not die until heated to about 113/114 degrees. UMD, Cleveland Clinic and Wash U St Louis all have departments of hyperthermia; maybe other places too but those for sure.
The tricky part is getting the heat up high enough in the right spot; in certain places in the body this is easy and others it is hard. There are very innovative techniques for different situations, including whole-body hyperthermia (which can be tricky and has the dangers of a very high fever but managed properly is safe), or heating blood and re-circulating it through an isolated spot. Sometimes ultrasound is used to heat the tumor.
When I researched it I found out that vets often use externally applied heat to shrink tumors so they can be operable (like if they are too close to spine, etc). My tumor and node were both pretty palpable and near the surface of my skin. So I thought, why not try this? I used an ultra hot hot water bottle and kept re-filling new hot water to keep it piping hot. Since I absolutely LOVE a 105 degree hot tub, I have a sense of what 108-109 might be... so i just went a bit past "ahh" to "yikes!" (I got pink mild non-painful burns in the area, like a distinct sunburn, but everything healed perfectly by a few weeks after stopping.) I did this 2-3x per week during chemo and particularly the few days prior to chemo day, when I did it daily.
I talked to the UMD guy later on because I was wondering about it vis a vis radiation..... since they had both hyperthermia and protons at UMD. It turned out not to be appropriate for me with rads, but we had a nice chat and I told him about what I had done during chemo. He said "You likely helped yourself a great deal."
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Dear BevJen, last pelvic-abdomen MRI is clear, so that is it. Next week we'll have whole body CT and ultrasound, so hope for the best.
I also read a lot about hyperthermia for cancer but I think it is in very early stages of science and just a few practice something. In reserved cases it can be used effectively for local treatments (when induced by high frequencies in small volumes (thus high power density), by mechanical (sound) or electromagnetic waves). Mechanism of whole body treatment (like infra-red saunas) seem to be ineffective because of our body's ability to thermo-regulate temperature extremely well up to 0.1 degrees, especially for inner organs... At 109F for whole body (I mean inner temperature) we'd die in minutes, so only locally something can be done...
Saulius
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Useful information about how different foods can affect our health.
Listen to Sea Vegetables from Nutrition Facts with Dr. Greger on Apple Podcasts. https://podcasts.apple.com/us/podcast/nutrition-facts-with-dr-greger/id1183093544?i=1000466154968
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Saulius,
Good luck to your wife for her tests next week, but so far, so good from what you've reported.
Thanks for what you know about hyperthermia. I thought perhaps it might be more popular in your corner of the world. If I hear back from the doctor at University of Maryland Medical Center, I will update everyone here. They don't seem to have any clinical trials listed on their website for its use, but they have a big splashy webpage about it. So that's interesting.
I had a CT scan yesterday and picked up the report today. Stable with possibly decreasing size on one of my liver mets. I have a liver/abdomen MRI on March 5, and that will show the liver more directly. But I'm happy for the stable report and nothing new.
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BevJen congratulations on your recent results! May they be proven with the follow up...
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Yes, congrats BevJen.
The loco regional hyperthermia machines that I am aware of in use in Canada are the Oncotherm type, that use RF (radio frequency) energy to generate heat internally. The patient lies on a bed that conducts the energy and a conformable probe is placed over the patient to direct the energy into the underlying tissue.
Oncothermia, i. e. modulated-electro-hyperthermia for oncological use, is a fast developing supportive, complementary treatment method against different types of tumors. The principles are based on the classical method of Hyperthermia, but our aim, besides the absolute increase in temperature, is especially the direct electric-field energy absorption in the extracellular liquid and destroying the membrane of the cancer cells. Oncothermia's effect is synergic to radiotherapy and to numerous chemotherapies. Furthermore, it leads to an increased immunogenicity and effectively reduces the pain of the patient.
Oncothermia in general is not used as a sole therapy. Usually it is combined with chemotherapy, radiotherapy or other therapies and their combination. The method transfers energy using the principle of capacitive coupling (like a condenser) of radio waves of 13,56 MHz. No external shielding is needed. Oncothermia utilizes the special absorption rate of the near-membrane extracellular liquid of the tumour. The tumor tissue has lower impedance than the surrounding tissues, so most of the energy is transmitted and absorbed by the cancerous lesion. This selection of the tumour tissues (self-focusing) renders external focusing unnecessary.
Oncothermia achieves a permanent increase of the temperature in the extracellular liquid of the tumour tissue. Due to the constant energy-supply, a temperature gradient (temperature drop) between the extra- and intracellular electrolytes develops until the thermal equilibrium is reached at the end of the therapy. This (in absolute numbers very low) temperature difference acts on the likewise small distance through the cellular membrane (from extra- to intracellular) and that leads to a destabilizing thermal stress on the membrane of the tumour cells, leading those into necrosis or apoptosis.
https://oncotherm.com/en/oncothermia-method
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Thanks, Husband and Frisky!
Husband, the stuff you posted about hyperthermia is truly fascinating. Thanks for the links, too. It will give me more reading.
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Husband and Bev....does that only work for tumors that are visible? Would it work for bone mets or liver mets??
I know about Cryotherapy...which you get in that machine and its like hyothermia..for a minute or 2...I know when I was on Ibrance my MO said NO to that. I would be interested in the info for Maryland...Bev...if you have it can you text or PM it to me? Thanks lady!
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Apparently it works for liver mets and other internal tumors. The radio energy penetrates deep and heats the tissue. I'm not sure how they monitor temperature, but its supposed to be monitored precisely during the process. They typically give you the therapy every day, or every second day (sorry, can't remember exactly) for 10-14 days. There is a lot of research on the subject, and it does show success with liver mets. Its not a cure, but a way to enhance chemo or radiation therapy, and knock the cancer back further. We were thinking about having it done for my wife, but because she got that weird reaction when she first went on xeloda, where her liver became congested, blood flow became difficult, and it lead to ascites and hepatic hypertension, we were afraid to do anything that might make it worse. Might the heat cause more clotting? Or inflammation? Her mets were very diffuse in addition to having discrete tumors. I think you have to be cautious with liver mets, to not overdo treatment.
Here is an article on colorectal mets to the liver treated with locoregional hyperthermia:
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Re hyperthermia I believe they also can spot-treat some tumors by inserting a probe which heats them up.
Great news on your scan BevJen.
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PS this is the man I talked to re hyperthermia: Zelkjo Vujaskovic
zvujaskovic@som.umaryland.edu
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Here is a good link for ways of doing it:
this one is about dogs and this is the reason I went for the external heat...
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Husband and Santa,
Thanks for the additional information. I have my reading cut out for me!
I do have liver mets, and so it might be something to look into. Santa, that's the same doc who I emailed the other day. I actually work almost across the street from U Md. Medical Center, so if he's amenable, I might go over there and have a chat with him one day.
Bev
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Congrats BevJen! So glad your scan turned out to be Good news.
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Just stopping by to say hi. Happy to see some with some great news, but not the not so good news. I'm no longer taking the FZ, is anyone here still on it?
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hi Goldie, good to see you!
I have stopped taking the FZ but will resume soon. I’ve been weakening—or hoping to—weaken my cancer cells with a low methionine diet....and then the FZ and low dose chemo for the kill...
Who knows if it will work but it makes sense to me.....and I have nothing to lose. The chemos has reduced my hemoglobin around 7 and my QOL to zero...that’s no way to live...but a sure way of dying...
How’s Verzenio treating you?
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Frisky, I'm sorry things have been rough on you, you are a tough cookie tho. You have to be to deal with this dreaded disease. I saw where you were taking a break and feeling much better. I don't know if I will return to the FZ or not. Nothing had improved during 6 months I was on it. Things only got worse, was it the FZ...who knows. Know way to know. Doing well so far on the Verzenio. Due to different things going on, I'm behind on my labs, but I'm not concerned about it. I'm leaving for Michigan March 4-12. I'll do labs before I leave and I see my MO as soon as I return and get off the plane. That way I don't have to make a separate 8 hour round trip drive!
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Dear BevJen, news are amazing, holding our fists for you! Saulius
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Thanks, Saulius. I appreciate it.
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frisky: as you know from the Verzenio group, I’m finding Verzenio a very easy drug, and I’m saying that despite typing this from the toilet, which I have to stay close to about one morning a week.
I did terribly on low-dose oral cyclophosphamide two years ago, so it’s not that I’m generally hardy or anything. But I feel the negative posts in the Verzenio group might skew your impression; I suspect many women who do well on it don’t bother to visit the forum or post.
Can you marry me and add me to your lease before moving back to Italy? I’m dreaming of returning to Manhattan, as you know. And, sure, NYC has changed, but there still is no other place like it
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luce, I would gladly marry and pass on the lease to you, but I live in a coop apartment and I'm planning on selling it as soon as it's ready. It's a huge and unique space and I need to not only downsize, but also to no longer own...I plan on renting instead a one bedroom near Central Park and MSK. My numerous friends have kept me in this neighborhood for the past 30 years, plus the 24/7 doorman services, we have an amazing staff.
This space is a two bedrooms attached to a 650sf studio which makes it a 3bedroom, thus, if you want to come and visit Manhattan, you can be my guest.It will take me a while to get rid of my belonging and get the apartment in move in condition.
It's cold now, but hopefully the weather will be gentler soon, for those neighborhoods' walks I'm sure you would be taking.
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Frisky: Thanks for the exceedingly-kind offer! I stayed at 105 E 15th last time I was in NY in October ‘17, in the studio apartment of a friend’s mom. You may be familiar with the building; I believe it was initially intended as housing for working bachelors. The tiny built-in kitchen was in a closet. Very cute. I became disabled due to lung damage that November, so can currently only walk a few steps at a time. So another NY trip may remain a dream, especially since I don’t think my lungs like flying. Your place sounds amazing, though!
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Luce, thanks for posting about your Verzenio experience. It is good to hear that you have had a positive, tolerable experience with it. You have been taking it for a long time now. How long has it been?
Frisky, your apt sounds amazing. And a smaller unit near Central Park sounds equally amazing! If I moved back to NY, I would live near Central Park as well.
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JFL: I’ve been on Verzenio for two years now, as monotherapy (by my choice). My tumor markers fell at first, then got stable for a year, then jumped when my cat was killed, then stabilized again,...I played around with dose and supplements during the second year. Now I’m dealing with a large pleural effusion again but my markers actually dropped a bit. Not sure what’s going on but not ready to quit Verzenio either, since I don’t like the options. I’m a brat that way. I would like to pulse itraconazole for a week and see if it helps the effusion (it’s a VEGF-A inhibitor, amongst other things), but I’ll need to ask my oncologist for a lowered prescription for that week first and there was all kinds of trouble even trying to get any more Verzenio because of some inane technicalities.
I consideted Fenben about a year ago but regard it as chemo, essentially, so not ready for that.
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Luce, you have a unique experience. I am not too surprised that you cat's death caused a jump - with your body's fighting system busy dealing with the stress and grief of your loss, it may not have had the resources to address the cancer. Sorry to hear about your cat and glad you improved eventually and have managed to have more time on Verzenio. I haven't taken fenbendazole but have been on the "COC protocol" since August - mebendazole, doxycycline, metformin and atorvastatin through the Care Oncology Clinic. With respect to mebendazole, I haven't noticed any side effects. I wouldn't consider the mebendazole or any of the 4 drugs at all similar to chemo as far as my experience has gone. All very mild. I do recall from reading your posts in the past that you are not interesting in going the chemo or hormone therapy route. The COC protocol (or fenben) may be worth a shot. Good luck with itraconazole if you try that. That one seems to be a drug that interacts with many if not all standard BC treatments due to the way it is metabolized. Is it okay to take with Verzenio? Is that why you would plan to lower the Verzenio dose during that week when you plan to take itraconazole?
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