Ringworm drug for dogs (Fenbendazole) might also cure cancer
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praying. Hopefully it is something that can be ironed easily and with no loss.
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Praying for you Nicole that it is nothing. Keep us posted. And totally agree with Snooky and others. . I've also been wondering and worrying about Sonia--as she was feeling tired after her rads ended. . . hoping she is just taking a break from all the "c" stuff (as my husband has told me several times I need to). . . she is such a beautiful sweet person--I hope and pray all is well with her.
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Thanks my friends...ok so they did not see a bleed.*thank you Lord* and all of you for your prayers. I just spoke to the on call doctor and he said he looked at the disc and doesn't see anything out of the norm for post ablation changes but that he will my IR know tomorrow and to call me if they see something. I asked if it could be dead cell die off he said yes it could. He said if I have it again to take pain meds next time (he doesn't realize HOW CONSITPATED it makes me).....the tylenol is THAT bad though....
I tried just the 800mg motrin..it's not doing really anything PS: I am wondering if I should UP my ALA dose to help the liver?? - Saulius any thoughts??
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Dear Nicole, firstly, sorry you suffer but it is a surgery (and not an easy one), so body will take time to heal. I read on these forums people need up to 4 weeks to start feel better after liver procedures. I do not know if ALA will help liver to regenerate. Maybe you can call and ask your nurse if liver supplements have to be continued? If left on my own, I'd probably start from scratch: first stop the supplement for a few days, see how I feel, and then if better or same - I don't take it, let liver work itself, if worse, I take it... What do you think? Saulius
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Nicole, so happy you have some good news to report and praying for the same when your IR calls.
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Thanks Goldie
Thanks Saulius. Well I took my mushroom supplements this morning and my metformin and the ALA so too late to stop that today lol... but yea maybe I will stop it tomorrow. He did say that its normal days after the surgery for pain to come stronger because the liver has die off and and swell and just part of the healing...I thought he mentioned the word Edema or Adema? > spelling...sorry... I am waiting to hear back from them.
In the meantime tomorrow I get the biopsy results...but guess what...MO messaged me to say that they were in...and that I am still ER+ HER2-..........
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Nicole, Glad to hear your good news. Did she say what you be on next?
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Simone...my appointment to go over biopsy and treatment plan is tomorrow...we will discuss it then.
IR on call last night spoke to my IR this morning they both reviewed the films and said all looks good normal post ablation changes and to expect pain and if I have this done again in the future they want me to take pain pills... but (I wont...) I can't I need to be able to go #2!!!! It's so bad now that not only rice/ rice milk bind me up but even OATS!!! DARN IT and I was just LOVING Oat milk!!!! ughhh. Senna, colace, miralax , none of that works for me...0 -
Nicole,
I know what you mean about pain pills binding you up. I avoid them also. I don't have any recommendations on what to use for constipation. I haven't had any issues for some time. Not sure if you've tried coffee enemas, but that has helped me in the past after everything else failed.
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I was research brands and types of aloe vera extracts, as it has some marginal evidence that it might help breast cancer patients. One thing I noticed on the Amazon reviews was that 3 out of 4 reviews said what a good job it did in normalizing bowel movements. It is supposed to be laxative. So, that might be something to look into. The Now brand got decent reviews and was reasonably priced.
Scroll down to #5 on the list of benefits:
https://draxe.com/nutrition/aloe-vera-benefits/
https://www.breastcancer.org/tips/nutrition/supple...
https://www.mskcc.org/cancer-care/integrative-medi...
Lastly, some actual research on human patients with metastatic disease and taking chemo, that showed it improved outcomes:
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Thanks Husband I will look into that.
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magnesium citrate at night is very helpful for constipation. 400-500 mg per pill, 1-4 pills. added benefit of being good for sleep. (milk of magnesia related...)
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I have always taken for over 5 years now 400 mg mag. citrate a day usually in the morning ...2 weeks ago I started taking it at night.
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https://www.aloeproductscenter.com/products/aloe-arborescens/
This is brand of aloe arborescens I am taking. . . I started it a a couple weeks ago. . based on some studies showing anti-cancer effects. It is pricey. . but I am giving it a whirl. I haven't noticed a huge laxative effect, but I have heard the same as husband noted. . that it can act like a laxative.
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Mysticalcity, maybe there is a difference in the way different preparations of aloe extract are prepared? Or maybe its the difference between aloe vera and aloe arberescens? It sounds like both have anti cancer properties, but that the aloe arberescens might be more effective against cancer.
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Husband yes I think it has to be the Aloe Arborescens--at least is what seemed to be used in most of the studies. There are a number of studies on the website where I purchased it. . . if you can find that page you can link to the various studies and read them. There are other studies of course. . but the website had quite a few posted. Under the Science Tab. . Clinical Studies
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Hi all, since I had asked about it - just want to share what I found on the MSKCC site about Ashwaganda - https://www.mskcc.org/cancer-care/integrative-medicine/herbs/ashwagandha It is pretty positive - some anti-cancer action observed in non-human research. And thanks for replying to that question, santabarbarian.
I wonder if you can grow an aloe arborenscens plant the way some people grow their own aloe vera? Maybe too large for a window sill plant though?
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Xeolda...yup so that is the verdict. I guess if there is a thread here I will go there. I don't want to sound like a pessimist but...I just feel like more people fail on that...than succeed.
So my biopsy did not test for FGFR, ESR1 or P13K....that would need a foundation testing again and chances are they will not cover another test in the same year since my last one with them was in April. My doctor said right now the main concern was if I changed to HER2+ or TNBC which I have not. She said the 4 other oncologists on the tumor board all agree they need to stop my cancer now..or at least try with something they know can do that....Chemo. She still wants to consider me for 2 specific trials (we talked about these before my cryoblation) however, not just yet bc again, we need to stop this not "see" if something will...but with something that we are more positive will. She is still going to try and send out to have the sample tested for those mutations I listed above. The testing that Hopkins did on the sample is not like Foundation Testing where they tell you what mutations is has and what meds work against those mutations.
For my body weight and height I technically could start the Xeolda at 2600mg / day but we are going to do 1000 mg morning , 1000 mg night so 2000mg a day to start for 2 weeks on ...1 week off and then we can change that to 7 days on 7 days off or what ever might work better depending on how I do. I will start on the 15th. The Marine Corps Ball is the 14th and I don't want to feel awful for it so 1 more week is ok she said. Plus I have to consult next week about getting my ovaries out..yes that is happening and I am so glad it is.
I did find out (Saulius) my KI-67 dropped now... 5-10% from 70%....so there is something going on with the tumors... on a side not she agreed to prescribe me the statin...lowest dose but still I am happy that is another pathway blocked! The good thing about Xeolda ...it is NOT processed by the liver...but instead by the kidneys so hopefully my liver will be able to cope with the supplements and off label drugs.
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Nicole, I have been on Xeloda for 4.5 years. There is a thread. In the beginning it was hard for me, I was on 7 pills a day. It was horrible. I am now on 5, so you should do well with 4. I am 5'9" and 150 lbs. My SE are different from in the beginning up to now. I'll go back and get the link for the Xeloda thread and come back and edit.
Here ya go, and it's for stage IV only.
https://community.breastcancer.org/forum/8/topics/772113?page=347#idx_10389
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Thanks Goldie you are a doll I just posted there .
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Hope the new plan kicks cancer's ass for you, Nicole. xo
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Nicole, pray and make the xeloda work for you...
let me be clear...you don’t want to move on to the infusion type chemo anytime soon...
Hopefully, it will works marvelously for many years to come, and the amount prescribed is very low, so you should not suffer any side effects.
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Nicole,
I hope xeloda works good for you and kicks butt.
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Goldie, Seriously?! Four and a half years on Xeloda?!! Did you start on anti-estrogens, and they failed pretty quickly? And if so, then this is your secondline treatment? Do you know any biomarkers, is there some thing they look for that would predict someone does well on Xeloda? You have lobular subtype, does that make a difference? Liver mets, or bone-only? If not, they should study your cancer!!
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Xeloda can be very effective. In addition to Goldie's long run on it, Leftfootforward took it for 5 or so years and Lulubee around 4 or so years. When I was on it, there was talk of a woman who had been on it 10 + years and going strong. I haven't heard those stats with any other chemo.
Nicole - there has been news here of a few people failing Xeloda recently but I did find in my time on the Xeloda thread that it seemed to work pretty well for most people for a good chunk of time.
It is interesting - Xeloda is the inactive form of ancient IV chemo 5-FU. It activates in the liver and thus prevents most of the collateral damage that its IV predecessor drug causes. I find it amazing that the same active ingredient can be repackaged with a different binding agent and delivery method and substantially increase efficacy while reducing or eliminating nearly all side effects. It makes me think that we could have drugs among us now that, with some tweaks, could lead to durable, long-term stable disease. I have read that if researchers could figure out a way to get doxorubicin (the drug in Adriamycin (aka Red Devil) and Doxil (the liposomal version with significantly less side effects) directly/properly into the cancer cells, that the cells would not become resistant to it because it would even kill the cancer stem cells. The issue now is that researchers haven't found a delivery method that is sufficiently effective to do that. I think all chemos are in this boat to some extent.
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JFL, exactly... they have the technology for Doxorubicin - iNPG-pDOX! I wirite and write about this drug here but nobody pays attention:)P With doses of DOX at 10 % of standard, when it is packaged with iNPG, they reach functional cures in 50 % of mice with visceral metastases, other mice also lived very long, the chemo can easily be repeated because its side effects are just 5-10% of what normal DOX side effects are for mice. Houston Methodists have a 16 million DoD grant to push this to phase1 clinical trials to get drugs in 5 years to the market, and I am in direct contact with them for 2 years. Wrote a week ago - they are not ready with clinical trial yet, so it is 2 years late:/ I am very disappointed because I think this is a cure for us! Saulius
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Thank you Olma, Frisky, Simone and JFL
Frisky I am with you...I know Xeloda is the "lesser of the evils"...I guess (and I know you understand this part) that after getting all my hopes up with Ibrance seeing SOOOO MANY success stories and then to have failed out so soon just really was a downer I think my brain doesn't want to expect to do get a long run.
JFL...thanks for the info about how people have a long run. I am glad to hear that.
My MO also mentioned that she really doesn't like Pharmaceutical Companies and especially insurance companies that wont cover things ie: re-testing of the foundation one... she is going to try and re-submit anyway. I am also glad she is re scanning in 2months...to see if there is any thing happening. I told her I didn't think we should PET..because the PET didn't even show my Hip Met and it said there were 4 tumors in liver and when the guy at hopkins saw it and my MRI he said no...there were 3. She agreed and said she wants to do CT bone scan CT and will also do MRI.
She will do labs starting Friday and do them every 2 weeks. I promised her that if anything goes crazy with liver numbers bc of STATIN I will stop it. First I asked her about the statin and then we kind of got off track...so I brought it back up. I was like "PLEASE prescribe it ..I WANT YOU ON BOARD with me for this...."... my husband was like grinning and shaking his head, said later..you weren't letting it go...I was like NO I wasn't I want it and I want her to be with me on this... lol It worked.
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CURE-ious, my diagnosis was all in 2008, not 2014. I did 5 years on Arimidex, found bone mets only in 2014. Did Faslodex and Xgeva, didn't work for me. Changed to X, still on Xgeva as well. No organ involvement as of yet.
Nicole, I think because we are all different as individuals and the same with cancer, that everything is a crap shoot. What works for one, may not work for another.
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JFL,
Interesting point about adriamycin. In fact, when I discussed chemoembolization with the interventional radiologist before doing the microwave ablation, he told me that the drug that they use to inject the tumors (the chemo part) is adriamycin. I recoiled at the thought, knowing how difficult that drug had been for me after my initial BC diagnosis.
Bev
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Saulius, now that you say that, I did see the DOD grant reference you mentioned regarding the miracle doxorubicin formulation. That is where I read about it. Thanks for the reminder! Wonderful the DOD is stepping up. Sad the whole process takes SOOOOO long.
Bev, I will be looking into chemo-embolization (likely DEB-DOX) in addition to a 2nd Y90 as potential options, although I have already taken Adriamycin and Doxil. It is shocking how mild Doxil is compared to Adriamycin. Shocking it can be the same drug. I am surprised no one really does TACE. I didn’t expect it to be popular but thought that someone would occasionally pop up on these boards with a TACE experience. If I don’t have luck with my IR, I may pay a visit to your TACE-happy IR at Johns Hopkins! I suspect he would be happy to perform the procedure.
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