What other things contribute to NED or stable scans looking for help for my mum

[Ssm2019]

All of you lucky ladies who received NED on letrozole/Ibrance/denosumab can you please share what else you do/take to help fight this ? Looking for help for my mum who has been on these meds for 1yr and latest mri shows a tiny new tumor in her spine. She is very worried looking for some hope there are herbal or other things helping these meds work I have read about bicarbonate of soda helping on some way? All help much appreciated thanks Faye

[Hidden]

Hi Ssm2019,

First, thank you so much for looking out for your Mom....It's wonderful...

Re: your question, there has been lots of discussion here about various alternative/supplemental therapies that people are trying but it'd be a real chore to find these among the various posts/replies. There was one pretty thorough post recently, with good dialogue...I'll try to post a link here:

healthunlocked.com/share-me...

If that doesn't work, you can look in my "replies" (click on my icon/profile, then "replies" and scroll down about 15 or 20 to one entitled "Plant Based Diet".

I'm not NED, but I have really well-controlled extensive bone mets. My sister is NED. I'll mention the things we do:

Sister:

- "Runs" (kind of a fast walk) for about 10 hours a week. Medium walking would work just as well, I think.

- Plus she is vegetarian, except for locally caught fish.

Me:

- Vegan/"plant based" diet. My docs are in favor of this but they don't over-promise. (It's easier than one might think, btw..);

- Far Infrared heating pad applied to the areas where the mets are. These are available on Amazon, etc. The idea here is to heat up the tumors above like 105 degrees farenheit (don't know how to spell it) for kind of as long as you can take it; I try for an hour. Docs, again, mildly in favor but my gyno has cancer and says that at the Mayo Clinic in Rochester, they recommend it and have a room dedicated to infrared beds.

- Intermittent fasting, i.e. I eat only during 6-8 hours per day. Again, easier than you might think. My docs are in favor but one, the head of research at an NIH "Comprehensive Cancer Center", said that if I could do 48 hours that would be better.

- Lots of anti-inflammatory stuff/etc, e.g. garlic, curcumin (sp?), hot peppers, ginger, tumeric (so, basically, spicy Indian food!)...you can buy these as supplements, too. Plus low dose aspirin and claritan daily.

- Carrot juice, in high volumes. Jars on the grocery shelf taste awful...Trader Joe's (US) has really delicious fresh in the refrigerator section. Bolthouse Farms, at most groceries (refrigerator) is almost as good.

Again, you'll read lots on here that's different. Just do some research to choose, or try it all! But please do be careful of to not cause some unintended conflict with the meds/treatment. Ask the docs (Everything I've listed is doctor approved for me).

Best wishes to you and your Mom...

Lynn

[Ssm2019 in reply to Hidden]

Hi Lynn fish, thank you for taking the time to read and reply to my msg all your suggestions are very helpful and I will suggest these to my mum an have the oncologist opinion on them we have an appointment Thursday I will take my pad with all my questions. Glad to hear you and your sister are doing well and hope for many more years of success for you both x

[Hidden in reply to Ssm2019]

Hi Ssm2019...btw, w/ the FIR heating pad, I set the heat to about 140-150 degrees, hoping to achieve 105 on my bones/tumors...Woke up realizing I should clarify!

Good luck on Thursday...and I agree w/ what Scarcie said re: questioning if the "new" tumors were actually new or just newly visible..Take care!

[Selmac in reply to Hidden]

Hi Lynn, kind if butting in on this conversation. I am vegetarian but eat no fish. I'm allergic to shellfish. Everything I eat is organic. I have to go to three different stores to get everything I eat in generic. I dont eat bread but I do eat quesadilla shells that are organic. I also eat organic pasta. I wont eatcanything with soy. I get tired of running from store to store. Trader Joe's would be a bit of a ride for me. Do they have a lot of organic items?

Thank you

[Hidden in reply to Selmac]

Hi Selmac...

Good question...I hadn't really thought of that but now that you ask, they definitely have organic options for many/most pantry items (canned beans, tomatoes, sauces, etc.) but maybe not as much available in produce? The organic produce selection is not as extensive as, say, Whole Foods. I think....I might be headed there today so will correct, as needed.

TJ's is my secondary store, i.e. I get just a few items there. I buy most of my groceries at WF, often ordering delivery on Amazon, but I know this isn't available everywhere. I know some people think of WF as kind of pricey, but I find I spend less there than at other stores, and since I'm buying mostly produce and staples like rice/quinoa/bread, my bill is pretty low. Plus I have Prime and got the Amazon credit card, which gives me 5% off all purchases and access to some great specials (e.g. dirt cheap avocados, and I eat one a day), so I do feel like it's a good deal, overall..

Aside from the carrot juice, I could do all of my shopping at WF. The only fresh carrot juice they have has ginger in it, which is certainly a good thing to consume, but I don't like the taste of it in my juice....So maybe you have a WF nearby?

Good luck with the shopping! I hope you find a way to simplify...

Lynn

[Selmac in reply to Hidden]

Lynn, thank you. What is WF? I get a lot of stuff at Food Lion. I do purchase a lot of produce. I eat a salad every day with tons of veggies in it and make my own dressing. I have to go to Publix since its the only place I can find fresh lettuce. Then I have to go to Walmart, it's the only place I can find Organic carrot juice. If I want quesadilla shells in organic the only place that has them is target. Thanks for the response.

[Hidden in reply to Selmac]

Sorry, "WF" is Whole Foods.

Your grocery options sound like those near my beach house...Trader Joe's and Whole Foods are 90 minutes away... Now I see why you have to run all over the place to get what you need! What a shame!

Is there a farmer's market nearby? But that would probably just mean another stop...

Gosh, I don't know what to suggest except maybe buy some stuff in volume and freeze it? Go to Target for quesadilla's every month or so and freeze them? I freeze all my bread, e.g...it comes out great. Or...make your own with organic flour? Not sure this would actually ease your burden, though...but I'm sure they'd be fantastic, fresh/warm out of the pan!

Or maybe ask a friend who goes to one or the other stores to consistently pick you up XYZ? Or eliminate Walmart by buying a juicer and make your own carrot juice (a lot of places sell carrots in bulk/by the crate for this purpose...e.g. (I hate to say it) Whole Foods...but maybe Publix does this, too?

Or, does one of them offer delivery? Where I live, any grocery delivery other than WF/Amazon is ridiculously expensive, in my view, but I'm sure it varies...

Sorry for the barrage of useless ideas...I'm sure you've thought this through. In any event, I'm sorry about the time & energy....both tend to be in short supply while doing treatment!

Take care,

Lynn

[Hidden in reply to Hidden]

**and by "quesadillas" I mean "tortillas"!

[Selmac in reply to Hidden]

Thanks lynn, I live in Myrtle Beach and all the stores are close by. I do buy organic frozen blueberries and strawberries to eat with my oatmeal every day. I think I just get worn out running in so many stores. I also make my own garlic, red pepper hummis. It's all organic. I make a lot of it and and put it in containers and freeze it. I do have to order organic crackers. That's one of the few things I can't find here. Nice chatting with you.

[Hidden in reply to Selmac]

Oh! Myrtle Beach, lucky lady! My beach house is on the Outer Banks...Duck. I understand that Myrtle Beach is lovely...My sister lives on the Outer Banks and I'm pretty sure that the fresh ocean air has helped her live a long time with MBC!

[Red1246]

Dear Faye,

How fortunate your mom is to have your help!

I’m glad you’ve seen my post on a plant-based diet. I’ve been on it for 2 weeks now and feeling good about it. It does take longer to cook as I don’t by want to just eat a bowl of steamed veggies but there are delicious recipes available.

I’m afraid I, like you, am still looking for the magic to help get to NED stage. I would also recommend acupuncture. I’ve been doing it twice a week for about 4 months and believe it helps with symptoms (hot flashes and fatigue). I’m also told it may actually help prevent further metastasis but this is unconfirmed by any medical Doctor I’ve seen. Of course they’re trained in western medicine and many of them do not subscribe to integrative medicine.

Hope this helps somewhat.

Sending all best wishes to you and your Mom.

Red

[Ssm2019 in reply to Red1246]

Hi red thank your for replying to my post I have suggested acupuncture to my mum I I think a plant based diet is a good thing from reading all about the benefits I will try to go plant based too to help encourage this thanks for your help hope you are doing well an continue to do so x

[Becca65 in reply to Red1246]

Does insurance cover acupuncture?

[Red1246 in reply to Becca65]

I’m not sure as I’m with a medical organization called Kaiser Permanente.

Prior to joining this group, I was insured with Blue Cross. They paid for part of my chiropractic fees but at the tine I wasn’t having acupuncture. At least they aren’t opposed to some “alternative” forms of treatment so may cover acupuncture as well. You should be able to find out about coverage by making a call to the insurer.

Good luck!!

Red

[Becca65 in reply to Red1246]

Thank you for replying. It sounds like you are in the USA also. I wish there were more doctors out there that were open to, informed about or studied both traditional therapies and alternative. It would be wonderful if every oncology practice had an alternative practitioner available as an option for those of us who wish to combine the two.

[Red1246 in reply to Becca65]

I so agree Becca!

I’m trying to figure it out on my own as are many of us and it really would be so helpful if there were integrative oncologists involved with all cancer centers.

All best to you!

Red

[LouisaMay]

Hi Ssm2019,

Have a look at Joe Tippens's blog (google him). There are several ladies on here taking fenbendazole, as Joe does, and there are well over a hundred success stories in Joe Tippens' Facebook group (which you can join using a password in the blog). I have been using it since last August and have reached a state of 'no measurable disease'. I have recently posted a list of other things that I take. Tackling stress and unresolved negative emotions from past events is very important IMHO and I have been doing that by meditating every day - there are plenty of good free guided meditations on Youtube. I look forward to that precious 'me-time' every day now. Sending love and best wishes for you and your mum. xxx

[Mindysooty in reply to LouisaMay]

hi LouisaMay, I've resisted the Fenben up to now but following your recent post, I've been thinking more and more about taking it. I'm on Palbo/Letrozole/Denosumab - I seem to think you are on the same regime? Rightly or wrongly, I'm not bothering telling my Onc, she's never interested anyway and I know a lot of ladies on the same meds combo are taking it so after my next progress scan - next Monday - I'm seriously considering it. I just wondered where you buy yours from? Also, I think you said you have a 1g sachet 3 times a week - do you just do alternate days? Any side effects? Thanks and best wishes - and long may your NED continue :). x

[LouisaMay in reply to Mindysooty]

Hi Mindysooty, In all honesty I'd have been pleased with 'stable' so no measurable disease is thrilling - all my extensive bone disease, liver and mesentery have healed! My onc doesn't know about the fenbendazole and was surprised by my scan results. I get mine from Pet Drugs On Line (UK) and have to invent a few pets as you have to name them and state their weight. I do 3 days on (Fri-Sun) and 4 days off. I take it with a spoonful of extra virgin olive oil but with any food containing fat will do fine. No side effects whatsoever. Hope this helps with your decision, sending love and best wishes xxx

[Mindysooty in reply to LouisaMay]

Thanks, thats really helpful. Ill get my thinking cap on for the names lol. X

[Ssm2019 in reply to LouisaMay]

Hi Louisa may thank you for your reply I read your list of other things you take this is amazing just what I wanted they must be doing something for you to have those results I am going to get her all you have mentioned and think about the Fenben sounds good what I have read about it, Keep doing what you do as it’s working and glad to hear you are symptom free this is brilliant xx

[LouisaMay in reply to Ssm2019]

Good luck and best wishes xxx

[Hidden in reply to LouisaMay]

Okay, you all have got me curious about Fenben...I googled a bit...there does seem to be something potentially valuable in this. The NCBI published a study which showed that, in mice (poor creatures!) Fenben alone, and supplements alone, had no effect on the tumors, BUT Fenben and supplements ( I think they said A, D, E, K (?) and something else) IN COMBINATION had a marked effect. I also read a bunch of anecdotal accounts...

....gosh, I'll try to ask my Onc about this next week...I'm game to try just about anything, but this is like heartworm treatment, basically? I have a small mental barrier that I'd need to overcome, since it's not really in use for humans...

[LouisaMay in reply to Hidden]

Hi LynnFish, of particular interest is the fact that Oklahoma Medical Research Foundation are doing a retrospective collation of successes and failures of fenbendazole in beating cancer, using medical records. So soon we will have some proper statistics. In the meantime, Joe Tippens blog makes fascinating reading. I'd be interested to know what your onc has to say but don't be surprised if it's not positive - then again, it's not him/her fighting for life! I believe human clinical safety tests have been done many years ago. Good luck with your decision. xxx

[hopenowandtomorrow in reply to LouisaMay]

I agree with many others & take the Joe Tippens protocol. I was Dx Stage IV MBC April 2019 to the left pelvis bone. Started taking the Tippen’s protocol Aug 2019. Scan in Nov 2019 was NED. I’m also on Traditional Meds IBrance/Faslodex/Xgeva. Oncologist said I have had well above average results. I hope that helps! ❤️🙏🙏

[Hidden]

Sometimes a tiny new tumor may not be new, so much as just became visible. My oncologist said this can happen depending on the type of scans that have been done on that area before. It may have been too small to be picked up on another scan. A radiation treatment may help the new spot. Always talk about options with your Mum’s oncologist.

[Hidden in reply to Hidden]

Sarcie...thank you so much for your comment! I've been trying to dispute a declaration of "progression" from about 16 months ago. My point is exactly what you're saying...maybe those tumors were already there, just not "hot" enough to show up. There were maybe 2 or 3 small ones...still just bone, and I have extensive bone mets.

The appearance of these tumors occurred as I changed the place where I get scans...With the change, the SUV/FDG uptake rates on most of my tumors doubled!! But then, a year later, I went to a different facility and they halved! So this tells me that, at the place in the middle, it was like they had their screen brightness turned up to max! I think they call this "calibration" of the machine...

At the time that this alleged progression was declared, I changed treatment from Let to Faslo, keeping Ibrance in the mix. But my doc coded the reason as side-effects, not progression, so it would be easy to go back at some point...

I do think I have at least one of my two oncologists on board re: this...So I'm going to go only to her for a while for a few reasons, but one reason is so that when I get new progression, I have better odds of success in trying the LET again...

Thanks for your insight...it definitely boosts my confidence in my dispute...

Lynn

[Hidden in reply to Hidden]

p.s. I realize that I'm living proof of the wisdom of getting scans always at the same place...but I have other reasons to jump around and feel confident that I can reason with folks about the implications of this...

[Ssm2019]

Hi sarcie, this is what the doc said who done the scan she had a full body ct in jan and the results from this were no progression all was the same and this mri is for her pain in her legs she has a scar tissue pressing on her sciatic nerve from radiotherapy so she is in agony at the moment thinking of placing a rod in her nerves to Stimulate the pain sensors? Scan done to see if procedure was ok for her seen the tumor so maybe it was not picked up but my mum is worried as can be expected hope this is the case and she is doing well other than pain from nerve thanks for your reply I am hopeful she has many more years and to get some pain relief to continue to live her life as she wants x

[hdhonda]

My oncologist doesn't use the word NED. He says stable which basically means no growth and no shrinkage. They are not concerned about small shrinkage or growth because the way you are laying or the difference in machine or in person doing or reading scans. Hope this is helpful. Blessings, Hannah