Boosting Your Immune System - share your ideas

[agness]

Juls asked for a separate thread about boosting immunity so here goes. If you have anything to offer -- things that helped or didn't throughout treatments, then please do share.


I think I eluded to this elsewhere but I abstained from taking neulasta during chemo. I read about how it works to push the pedal on the bones to produce white blood cells which can have a protective affect during treatment but I was so depleted this seemed like a bad strategy. You don't push the depleted body to the edge like that. The other things that bothered me were that so many patients were complaining of bone pain from the Neulasta, not only that but that they were being told to take Claritin to deal with the bone pain.

Chemo --> Neulasta --> Claritin

Did this cascade of interventions ever end?

Then I read about a late stage woman with ovarian cancer, they gave her Neulasta again and her body didn't respond, she has used up all of her reserves. I wanted to save this medication for when I needed it.

I asked my Chinese Medicine doc if he could help and he said yes. Early studies indicated that Chinese Medicine could effectively boost the immune system during treatment, it was out there but it matched everyting I knew about this medical approach to the body. I told my MO I was going to hold off and see what Chinese Medicine could do for me. He put me on a tea pill formula he labelled "Energy" and the next round of blood labs the nurse said, "that's weird." Immediately I went into a panic, who wants their chemo nurse saying that their blood labs are weird? She continued, "your levels went up when they usually go down". It was the TCM, and it was working.

If that wasn't proof enough, after chemo ended my TCM doc got me off "Energy" and onto a kidney formula, to help recover from chemo pain (I could barely walk the stairs). My MO started getting worried when two blood draws showed lowered WBC counts; he suggested it might be because of the Chinese herbs. That didn't make sense to me as my body had been fine with the treatments all the way through so why would it start affecting me now, plus TCM is about boosting the body, not depleting it. I keep all my blood labs in a spreadsheet and I entered my labs and kept thinking about this. Suddenly I noticed the spike up and the spike down -- my body had responded, going up when it should have gone down and down when they thought it should go up -- the Chinese herbs were to "blame" because they were working. I called over to my TCM office to ask and they agreed that it was probably that I needed to be on the "Energy" formula, and also because the body and blood were strained as we started to shift seasons into Late Summer -- the time of the spleen and blood (I know about Chinese 5 Element Theory also).

I've stayed on that formula since and there haven't been any issues.

[sonyabegonia]

I will post here for those that are like me and were diagnosed early stage, as to what I have done to support my body, based on my Chinese Medicine doctor's recommendations. (For any patients in Atlanta that are interested, his name is David Hobbs / Hobbs Acupuncture and is at Piedmont West. He says he doesn't sell supplements and that keeps him honest. He does speaking engagements about the vitamin industry and only recommends the absolute best -- and that the absolute best are always changing...)
His suggestions were based on helping my immune system, heart and aiding my very sluggish digestion. (ok, I have severe constipation LOL)

Jarrodophilis by Jarrow (refrigerated formula) 1 - 3x a day, before or with a meal for overall gut health
Triphala by Planetary Formulas 2@night and 2@morning, if needed, for bowel regularity

Magnesium Citrate by Nutricology 1 am & 1 pm, for cardiac health, etc.
Ubiquinol 100 mg (COQ10) by Jarrow 1 am & 1 pm, with food, for cardiac health, etc.

Vitamin D Supreme 5000 IU with Vitamin K1&K2 by Designs for Health, 1 per day (get blood test from md to make sure levels are high enough with one capsule per day), immune system

Ultimate Omega by Nordic Naturals, 1 3x a day with food, anti-inflammatory
Super Bio-Curcumin by Life Extension, 1 2x per day with a meal, anti-inflammatory

Purple Mushroom Defense by Enzymatic Therapies, 1 2x per day, immune system
ECGc by Designs for Health, green tea, 1 2x per day, immune system

[Juls]

Ann - Thanks for starting this thread.
I don't have much to add - realise now that I have done little to help my immune system.
The one thing I have done is take Vit D3. This was directly in response to side effect of Femara. I found that I was getting really stiff after starting it. I did some research and found an Oxford Journal report on AI's. The recommendation was that if on Femara you should take Vit D. I started in August last year. Unfortunately I didn't get Doctor to agree to test Vit D level until Dec 15 (not a standard test here). About the same time Scottish Health Board also suggested/recommended that most of us here would be low so should supplement. So 2 good reasons to take. 70 to 80 was the level I wanted. When tested I was at 72! Good result. One of the Nurses had just had Vit D tested & she was 17!!

[agness]

Improve your gut health

Most of our immune system is in our gut, and my sense of this disease is that is has its roots in liver-pancreas-intestinal dysfunction.

Take probiotics -- I take HLC probiotic formula from Pharmax, my naturopathic onc has also recommended Integrative Therapeutics Pro-Flora formula. Switching between more than one probiotic is supposed to be better he said.

http://www.pharmaca.com/pharmax-hlc-high-potency-60-vcaps
http://www.integrativepro.com/Products/Probiotics/Pro-Flora-Womens-Probiotic

If you are going through every three week chemo now, don't take anything the first 7-10 days, starting s could days before treatment. Once you get over that hump you should have two weeks clear to work on your gut and diet - and if you want to get better you will use that time to try to restore your system. I was really depleted when I was diagnosed, I used this strategy to help restore during chemo, from four pregnancies, two live births, and seven years of breastfeeding (I wasn't out to win prizes, everything I read said you could breastfeed as long as you wanted to).

I have a ton more links about the microbiota but Im on my phone now. Let me know if you want more to read.

[Juls]

Hi Ann
Thanks for info. Will look into this.
I am back on chemo (Xeloda) - Today is 14th day of tablets. Didn't get time to think before I was put on it on 31st Dec. So no preparation - diet or otherwise!
Any thoughts welcome!!

[MaineRottweilers]

Sonya,

Would you mind sharing what your basic monthly cost for your supplements runs? Is any of it covered by insurance. CoQ10 is sooo expensive and I ended up dropping it because I wasn't able to measure benefit. Expense is really holding me back.

[agness]

I take UBQH (activated CoQ10) for my heart and brain, though my naturopathic said to take a break during brain rads.

Evidently even chemo will cause heart damage and not just the targeted therapies. I've heard of much high dosages being called for but I take it morning and night.

Recently I heard the story of a grandmother whose heart let out while on a walk with her grandchildren. She had breast csncer treatment many years ago but they attributed the cause to heart damage from chemo years before. Obviously this is an extreme case but since the "standard of care" is to do nothing, it is hard to see the benefit of doing nothing

Maybe we should add CoQ10 as a standard therapy after Herceptin and chemo to our list on the working thread, for our patient manifesto.

Ann

[Juls]

I was told COQ10 good to take especially if EF % drops due to Herceptin treatment.
Available from £6 here ( naturesbest.co.uk & iherb.com).
Have not taken it so far but may be worth considering.

[Juls]

Another thought/suggestion
Turmeric?
Said to be anti- inflammatory and an antioxidant.

[jra40]

Green Tea is #1 for me - drink 3 cups a day, Turmeric definitely. There is a great homemade tea my nutritionist gave me: Almond milk (I use vanilla flavored), turmeric, ginger, and cinnamon. Heat via microwave or saucepan. Excellent!

[Carol Ann]

Your tea sounds excellent, Jessica! How much of each spice in the tea?

Thanks so much for posting this!!

Carol Ann

[jra40]

Carol Ann - for the tea measurements, I just do a 1/4 tsp of each or however much you desire the strength of each spice.

[agness]

Sugar - cut back on refined carbs, sugars are known to lower your immunity. In Chinese Medicine they take this further and say it dampens the Spleen (pancreas). In Western medicine we understand that it can cause dysregulation in the pancreas which affects the insulin and glycogen metabolization in the liver and the lived is the cornerstone of our immune system.

I suspect that extra sugar is also promotive of imbalance towards negative strains in your gut, the microbiota also being a large part of one's immune system.

Further, extra sugar causes dysregulation of calcium, magnesium and other electrolytes in the body which unless corrected causes problems with multiple hormonal and nutritional pathways in the body.

Eat. Less. Simple. Sugars.

[scrunchthecat]

I am taking 100mg of CoQ10 and 1000 units of D3 every day. I am going to add 1 gram of Turkey Tail (http://www.amazon.com/gp/product/B00WGROQIM?) beginning next week. These are all the recommended dosages on the bottles. Does anyone have any recommendations for dosing?

[sonyabegonia]

I just lost a long reply I had typed. :-((

Hey Tracy,
I get my supplements from Amazon, bc I feel like they have the best prices. If you can find someone to examine you that is a naturopath or Chinese medicine practitioner, they can help you determine exactly what your body needs, so that you don't take things unnecessarily. The CoQ10 / Ubiquinol QH-Absorb, 100 mg, 120 count is around $30. Since I take 2 per day, it costs $15 per month. That's not too much, but when added in with a bunch of other things, it can get very pricy. I say take what you are told you need when you can and take breaks from time to time.

My insurance never pays for supplements, naturopath or Chinese medicine. It's what I consider my safety net, though, and it keeps my numbers from rising.

The green tea recipe that Jessica posted is a great idea of something that will help with inflammation. And it sounds delicious. I will be drinking that tonight by the fire! Sounds so good with the cold weather coming our way. (Thank you, Jessica for the yummy recipe!)

Scrunch the Cat, I like that Turkey Tail is a mushroom supplement! I took a different one, listed above, and took one am and one pm. I just went back for a follow up and I am off of it for now.

Juls, it is amazing what good things Vitamin D does for our bodies. I am so glad your levels are at the level you wanted. Dontcha just love it when we get some good news?!

I very rarely eat sugar or simple carbs and I try to buy organic food when available. Drink good quality water with low acidity. I do have my weaknesses, though.

Ann, you impress me and I can tell you have done so much research. I am learning a lot from each of you ladies! Thank you!

[sonyabegonia]

One thing I left off my reply when I re-typed it...

Beautiful picture of you, Tracy!

[Andrea Barnett Budin]

Please see my updated thread -- WHY I TAKE SUPPLEMENTS...

Chock full of info on this topic and staying alive beyond all statistics...

I will post an updated supplement list for those who would like to see it.

I warn you it's very very very long, but I swear it's why I am still here. Been taking supplements from my integrative oncologist since 1998. Every day. And I will continue forever...

I believe it's part of my secret recipe that I am honored to share with all who are interested.

LOTS OF IMMUNE BOOSTERS and more, for energy, to fight off free radicals, to detoxify, heart healthy to keep your EF up...

This thread reminded me and I searched for it and came up with a batch of other old threads that are worthy of reading at your leisure. A font of information from all our old friends.

I smile looking at their faces and remembering how much I love them. I am speaking of those no longer with us. But watching over us I think. I will never forget them.

And the faces of many who are still here!!!! And I rejoice in that!!!!

Still sticking with the HER2 support board. Cause we find so much knowledge, inspiration and caring in our shared journeys and from our hearts...

With love, as always,
Andi

[sonyabegonia]

Hi Andi!

I am so happy to see your post here! Some time ago, I ran across your supplement list and had been unable to find it again. Today, with your help, I have been able to find it and have been reading, copying and pasting your lists and recommendations. You are so uplifting and I am grateful for your positivity and that you are doing so well after going through SO much. You are a blessing!!

Yours,
Sonya

[Andrea Barnett Budin]

Hi Sonjabegonia!

And ALL...

Just posted a new thread -- 2016 UPDATED SUPPLEMENT LIST

Sorry I didn't get to alphabetize it. It's a project getting all my ducks in a row.

I buy 5 or 10 supps and then try 1 for 3-4 days. My body will tell me if I can stay on it or not.

Then I proceed and add another and so on.

After I am all done -- which takes kind of forever -- I retry the ones that were rejected by my body. Sometimes, I am good to go. Most times, nope.

I give the bottle to someone who might be able to benefit from it and bite my lip and toss it in the garbage.

There was one Lycopene or something like that. The new super food supplement. Well my body can't handle it. I gave it away to my hairdresser who was delighted.

I can't seem to metabolize fruity things. IBS is very demanding. And you don't want to end up with 2-5 hrs of bathroom drama, often in the middle of the night! So I obey...

Here's to your good health, my Sisters.

Check out the new thread please...

In my old thread -- WHY I TAKE SUPPLEMENTS THREAD -- which you may also be interested in -- I mention my list is on the Survivor's page. Do I have a clue what that means? Tried to search for it, but failed.

So -- here's my gift to you -- 2016 UPDATED SUPPLEMENT LIST must read...

Hugs,
Andi

[Donna H]

Does anyone have a suggestion to help avoid getting sick from air travel? Staying home or driving isn't always an option. I didnt get sick at all while I was getting Nuelasta the day after chemo but I dont think my onc will prescribe that.

[sonyabegonia]

I am off to check the new supplement list of yours, Andi! Thank you for being a beacon of light for us all!

[sonyabegonia]

Donna,

I am not sure about what to suggest, but maybe Lorezapam would be helpful. Are you talking about motion sickness? That would help with nausea. My onc prescribed it for me as an extra measure of protection from nausea after chemo treatments. I still keep it on hand to help me sleep when needed. A tiny dose works wonders. Just make sure your dose is helpful and that it does not interfere with your ability to drive, if you will be driving after your flight.

Hope that helps!

[Donna H]

Hi Sonya-
No motion sickness - I just seem to get a really bad cold after air travel. A cold that lasts about 2 weeks or more. I never had this problem before treatment. I started taking vitamin C but there's probably more I should or could be doing.

[sonyabegonia]

One thing I can offer -- and I am sure there is a more holistic way to handle this, but anytime you fly or go in for surgery or anything, take a small amount of antibiotic ointment -- Bactroban, which requires a prescription, is the best, I was told - and put it on a q-tip and lightly coat the inside of your nose. This keeps any horrid germs from entering a dry and perhaps cracked nose interior where germs would love to set up shop.

Besides that, I remember seeing some natural remedies / preventatives on another post. I will look for it and post it here.

[sonyabegonia]

I copied this from a thread from Andrea Barnett Budin. It's called 2016 Supplement
List, which is fabulous. So, this is not preventative, after all. But if you are up for it, her list of supplements - and mine - can give you some ideas of how to boost your immune system. I say find a trusted naturopath and begin a plan made just for you.

HELPFUL ADVICE -- Take ONLY when feeling sick:
Zinc -- 30 mg (+ when sick -- lozenges 23 mg up to 6 x a day
vITAMIN C - 1,000 X 3
Echincea with goldenseal 900
Astragalus 1,000

[Andrea Barnett Budin]

Thanks for the antibiotic ointment BACTROBAN, Sonya. That is an excellent suggestion! Used to put something else in my nose that kind of disappeared. Originator sold company then didn't like the way they were doing things. And -- seems to be gone. But it worked!

And again, thank you, Sonya, for the post about the zinc ax 4 a day, plus Vit C 1,000 x 3 a day + Echinacea with goldenseal and Astragalus.

It is great at first sign of cold. But if you get sick w/plane travel (petry dish of germs in airplanes where you breathe it all in for hrs) and touch surfaces 100s of pp touch -- try starting a day or two before and of course THE DAY OF. Throw in a day or two after. THAT SHOULD KEEP YOU HEALTHY, Donna!

I was just about to post exactly that Sonya, when I saw it wasn't about motion sickness.

You are a wise and savvy lady. Quick learner. And you SHARE. I love you!

Andi

[Juls]

Ann
One step forward!
Started with probiotic yogurt this morning!
Been taking Vit D so adding calcium from today as well.

Andi

Going through list!!

Thanks
Juls

[Andrea Barnett Budin]

I recall when Dr. Gaynor first handed me my lists -- pages and pages -- subdivided into IMMUNE SYSTEM, DIGESTIVE HEALTH, blah, blah. Overwhelming. And ridiculous to think I could ever...

But my blood #s are always impeccable, despite a little cancer back in the day. I have read over the yrs on this site that this Sister or that Sister stopped taking their supplements. They didn't know why.

First of all, I knew why. It's a big damn pain the ass! You have to be rigid in your protocol. Well, when I was on all these meds for pain and whatever w/the hard chemo, and I was so sick, I had to be my own nurse. I would keep a list in the bathroom, on the vanity and write the day and date and the time I took each and every pill. I'd write the next time I needed to take whatever (for diarrhea or nausea and so on) -- and I'd carefully put a check mark next the one I had just actually taken and I'd turn the bottle upside down for good measure. I was meticulous. I kept a chart on ME.

I kept hydrated. I was very good. I couldn't eat but I'd crawl to the pantry and take a shaking handful of nuts and eat 1 handful, because you have to!

But I got to notice that the Sisters who stopped taking their supplements -- and I don't mean this as a scare tactic, just an observation -- I began to worry b/c those who stopped would soon and suddenly be in hospice and die.

So that served as incentive enough for me to stick with the program. These pills keep me alive and they keep me healthy and well!!!

A friend of mine was given her list from Dr. G. She told him -- okay, pick 10 -- any 10. And I'll take them. She has had 3 primary cancers. She takes 10. Every morning. She takes the AM pills and the PM pills in the AM. That's it. She has no tolerance for any more. That's her thing. Aside from the 3 cancers, she is still alive many yrs later. She will soon be 80.

So you must do what you're comfortable with.

It's a cost. It's a major bother. It's a project. I feel -- it's the least I can do. I am off chemo. I am miraculously still here. I do BELIEVE with all my heart that these pills have a profound effect on my health and well-being. And I do it all so by rote at this point, I cannot imagine what I would do without them. I THINK OF MY SUPPS AS MY LIFELINE.

Just as I do the meditation and the self talk thing and the guided imagery. I BELIEVE. I live open to LOVE, GRATITUDE, COMPASSION, GENEROSITY OF SPIRIT, GIVING GOD A REASON TO KEEP ME AROUND. I appreciate the smallest of things. Like having hair that won't blow away in a gust of wind. Like being able to breathe. Swear. I can walk and talk. Feed and bathe myself. I can type. Communicate. These are all great blessings.

A few mnths before my orig dx, the young rugged handsome actor who fell off his horse and became paralyzed from the neck down, whose name escapes me for a moment. It's in my book. I kept telling my husb that my 4th stage invasive lobular carcinoma could have so much worse. My husb would look at me as if I had lost my mind. I'd say I'M LUCKY...! He'd say, If you were lucky, you wouldn't have cancer.

No, my mother had Alzheimers and had lost her mind, become totally paralyzed. I KNEW well how blessed I was. And I know well now to appreciate all that has been given me. It impelled me on to a spiritual path I can see in retrospect I was unconsciously on all along, but after my dx I began to see the world in such intense colors. The chipped paint on the front door mid winter (when they couldn't fix it) that I saw every day several times a day as I came and went and annoyed the hell out of me -- no longer mattered. In the scheme of things, Who cares?

I did google each of the supps. I did need to understand why I was taking each one. You approach it in your own way. And please feel grateful for Dr. G's secret recipe to success. Don't abuse the honor. Share it with others. And follow it for all of the years of the long life it will grant you.

AHAH! Christopher Reeve...

Just saying..

Love,
Andi

[VDC]

While I am not a huge fan of supplements, I figure in the current situation it can't hurt! I have added the following supplements to my daily routine while I wait for more testing:

Flax Seed Lignans: 125 mg Lignan daily
curcumin: 1000 mg daily
plant phytosterols: 1500 mg daily
CoQ10: 75 mg daily
Vit D: 3000 daily
fish oil: 1200 mg daily
flax seed oil: 1300 mg daily
Grape seed extract: 800 mg daily

The Flax Seed lignans, curcumin, and grape seed extract have some research supporting their cancer fighting properties...although the research is limited and for the most part small studies.

Plant phytosterols, fish oil and flax seed oil have less research supporting their role in cancer, but I figure it can't hurt and with cardiovascular disease in my family (familial hypercholesterolemia) these are good supplements to help with heart health even if the research is spotty

Vit D and CoQ10 are thought to have some beneficial effect but I haven't seen any really convincing research done. Still, can't hurt.

I say these can't hurt because I am not on chemotherapy which could interfere with some of these agents. I don't know which might cause problems with chemo so use carefully and under the guidance of a physician.

[Juls]

Have been researching supplements. In particular AHCC (mushroom compound). Have ordered it but now worrying if doing right thing!
Why is it that I allow chemo (now on xeloda) in my body but I am hesitant about supplements?
Is it just me?

[Andrea Barnett Budin]

Anything new is difficult for me. And most.

Ingesting anything new is especially challenging.

Why did you choose that immune booster?

Mushroom blend is excellent choice. Not sure about other ingredients. AND THE PRICE...!!!!!!! Yikes.

I take New Chapter Lifeshield mushroom blend. Did you check out those ingredients? And the price?

I like dealing with Vitacost.com -- b/c they never give me a hard time if I order the wrong thing and they just refund and don't even want me to return. They say -- give it to someone else who can use it.

Their prices are excellent plus they run promos all the time. Promo pocket in upper right hand corner. And, if on their email list, you get notification of all sales.

That's my input for whatever it's worth, Juls.

BE WELL...!

Hugs,
A.

[Jackie07]

https://en.wikipedia.org/wiki/Christopher_Reeve

[Juls]

Hi Andi
I read an article about AHCC and how it is used by Doctors in Japan. The article stressed that it should be pharma grade only. I found it on offer at £31 and ordered it. Then I started to worry - should I take when on Xeloda - so I did more research yesterday. By sheer luck discovered that a study has been done with patients taking UFT chemo(Fluorouracil) & AHCC . There was a significant improvement in tumour suppression . Xeloda changes to Fluorouracil in the body. So thought worth taking to boost immune system.
Still a bit unsure about what to take or not. I know this is silly. I rarely took anything prior to BC!
I will look at the brands you mention.
Juls

[Andrea Barnett Budin]

Yes, Jackie.

It was such a tragic thing to see a young healthy man so completely incapacitated. In a wheelchair. Couldn't turn his head. Needed to blow into a tube to get air, and to speak a few words. I can't even imagine living like that. Do you remember him? And his story?

Juls, and ALL -- I rarely took anything before bc. Ever. Not for period cramps or whatever.

'95 mastec, tram flap, chemos (4) for 9 mnths w/all the awful side effects. I was found to be borderline ER/PR so they put me on Tamoxifen.

In '98 when my 4th stage invasive lobular bc had spread throughout my liver. Minor change in my always predictable liver enzymes was the tip off. Surgical biopsy confirmed same bc but also that I was HER2+ (Herceptin still in clinical trials -- I'd read all about it -- but I asked to be tested anyway.) I was then found to be ER-/PR-. Docs told me to flush the Tamoxifen.

I did all the pre op testing and scans (full body, not ECHO, the more invasive one for heart, a stress test, bld, bld, bld and more more more) I also went to 2 more oncs for input plus the integrative oncologist (Dr. Gaynor) cause I'd read his book in '95 and KNEW if I ever needed such a person I would go to him. He was spiritual, holistic, saw the patient as a body and a soul, psychologically and physically.

Onc #1 said Taxol. Onc #2 said Navelbene cause it was kinder, gentler and they'd already told me I would be on longterm chemotherapy for the rest of my life. Onc #3 said Taxotere. Why? B/c what you have is a highly aggressive form of bc and Taxotere is the most aggressive weapon we have in our arsenal. I decided to fight fire with fire and take the harder road. (Tempting though the kinder gentler path was.)

Dr. G, the integrative onc, gave me my list of suggested supplements. All other docs said to wait till after chemo to start the supps. I called Dr. G. He said -- IT IS DURING CHEMOTHERAPY, WHEN YOUR BODY IS UNDER ATTACK FROM THE CANCER AND THE EFFECTS OF THE CHEMO, THAT YOU MOST NEED TO BE ON THE SUPPLEMENTS!

It took great courage but I went with his advice. He was the expert on these. And over the yrs I would learn that mainstream western docs don't believe in supps, are still waiting for more studies to come out to scientifically prove their efficacy. If I had waited, I swear I wouldn't be here today.

So be brave I say, and go with your gut. My gut said, listen to this doc's advice.

I told you his first book HEALING ESSENCE by Dr. Mitchell Gaynor is or was on Amazon for 99 cents. I recommend it highly. It says sooo much!!!!!!!!!!! It said what I'd long been thinking. The mindbody connection is real and yet another tool we need to tap into. So I meditate and use guided imagery and mantras, talking to my body, and the Universe.

And I take my supplements, one at a time, every day (2-4 x a day). Empty stomach pills, AM pills, PM pills, SLEEP pills which include some prescriptions for high blood pressure and high cholesterol but are predominately over the counter supplements.

Any questions, just ask.

Again, thanks Jackie for looking for and finding Christopher Reeve's tale...

Hugs,
Andi

[Juls]

Hi
As you know I'm not impressed with part of my Onc team at the moment. Not getting much from them and certainly not reassurance. If I mention taking supplements - it might just tip them over the edge!
I realise that when on chemo you need them most. My concern is that I take something that works against treatments so have been researching first. The problem I have come across is that I'm triple positive (7 on ER+ scale) & while some are suitable for Her2 they are not for ER+ (& vice versa). Think this is what is confusing/worrying me.
Juls

P.S. Going to look on Amazon for Dr Gaynors book.

[Andrea Barnett Budin]

I do say -- these supplements were suggested by Dr. Gaynor for me -- ER-/PR- HER2+... ALSO I am post menopausal. Age 53 when given this list. Tailor it for YOU specifically, as best you can. And definitely go with what your GUT / INSTINCTS / Inner Voice tell you to do...

So yes, Juls, you must consider that you are ER+...

DR. GAYNOR HAS OTHER BOOKS WHICH GIVE YOU HIS SUPPLEMENT SPIEL THAT YOU MAY WANT TO PERUSE.

Your reluctance is understandable.

Mainstream docs do NOT like supplements. They don't understand them, have knowledge of them, trust them. Our med schools do not teach about these. It's kind of alternative / integrative / ancient Eastern thinking...

You are not going to get an OKAY let alone that sounds great from your docs. No docs (brilliant, top of their game, whatever) are into this stuff.

Though my fav onc has included a once a wk, or maybe once a mnth, class on these. His registered nurse is into them and may be pushing him. He's been my onc since 1995 and even though he tells me all the time that he tells all his patients and other docs about me and my miraculous survival, he still isn't a fan of supplements. He just remains mute at this point about them. After all, can't argue with success...

[Andrea Barnett Budin]

I see the 99 cent HEALING ESSENCE paperback is no longer available on Amazon.

I would definitely buy a USED book. I have done this many times before through Amazon and the book always comes in pristine condition. Amazing to me. I make a mess out of a book as I nearly devour it...!!!!!!!

What I see is available:

Dr. Gaynor's Cancer Prevention Program: M. Gaynor: 9781575663821: Amazon.com: Books

The Gene Therapy Plan: Taking Control of Your Genetic Destiny with Diet and Lifestyle: Mitchell L. Gaynor MD, Mehmet C. Oz M.D.

check out:
books » Gaynor Integrative Oncology

Dr. Mitchell Gaynor is most known for his work exploring and integrating alternative health modalities into his cancer treatment protocols. His interests led him to author six books and record three albums (with jazz-pop pianist Jon Regen) that topped the Billboard magazine New Age charts after an appearance on the influential Dr. Oz show.

His Work
Dr. Gaynor's interest in alternative medicine was sparked during his postdoctoral work at Rockefeller University when he came across research looking into nutrient-gene interactions and the immune system.

He was inspired by the idea that what we eat and our environment play a role, if not the most significant role, in our health, an idea that many conventional doctors still have difficulty embracing.

This research manifested in his practice through his focus on the immune system, nutritional supplementation, and a desire to find the root cause of diseases instead of merely treating the symptoms.


This is what drew me to Gaynor in Healing Essence. It was awesome. THE MINDBODY CONNECTION, treating the patient (mind body and soul) not just the symptoms!!

Inspiration struck again in the early 1990s when Dr. Gaynor treated a Tibetan monk who gifted him with a traditional Tibetan singing bowl. Dr. Gaynor viewed the inclusion of behavioral therapies like music, meditation, chanting, and breathing exercises to be an essential part of overall health and wellness, as they lower stress hormones and blood pressure and increase the function of the immune system.

He became fascinated by SOUND THERAPY. Tibetan bowls and more...

His first books, published in 1999, helped him build a successful practice and presence in the alternative and conventional medical fields.

The Alternative Health Field Grows More Intriguing Every Day

google:
books » Gaynor Integrative Oncology


Nurture Nature Nurture Health – Your Health And The Environment

Read Nurture Nature Nurture Health

This is a large PDF file (256 MB), which may take a couple of minutes to download.

.... quick and easy ways to detoxify the body


... building the immune system is key in fighting cancer

[Juls]

At hospital today for Herceptin and Zometa (had to reassure Nurses again about Zometa and dental treatment)
Then Nurse says - we have to give you calcium and Vit D as well!
So after all previous discussion about supplements and Doctors not keen on them - Staff give me Calcium and Vit D. Told them again I already took them but to no avail. Came home with enough to last months!!
I realise that they are basic but its a step forward.
Have to say this amused me.

[Andrea Barnett Budin]

Yes just about all docs (I see them ON THE NEWS...!!!) saying everyone should be taking Vit D and calcium.

Re dosages. Calcium (a body can only absorb 400-500 mg at a time, so I take 3 x a day). Vit D (mine is normal but low, so I have slowly increased to 10,000 every day). I am now mid range good.

Docs seem also to be open to probiotics.

Some are good with E W/Toph

Should be taking Selenium. Just saying.

And of course IMMUNE BOOSTERS and DETOXIFIERS...

Yes, it takes decades to get them this far. Hope they continue to evolve.

Co Q 10...

[Juls]

Last year Scottish Health Board recommended that all should take Vit D!
Calcium prescribed yesterday was 1200mg & Vit D @ 800 I.U daily.
I have been taking Vit D since last August at 1000 I.U which has given me a good level of 72. Think I might continue with my own capsules.
I downloaded the pdf by Dr Gaynor and I am part way through it. Just read about Selenium.
What is E/W Toph?
Juls

[Andrea Barnett Budin]

vitamin E 400 WITH TOCOPHEROLS (I use Vital Nutrient brand) ( 1AM + 2 PM)

Sorry. Must have been past my bedtime...


Yes, keeping an eye on our D and B is important.

Want not to overdo or not do enough.

You are good.

B12 has many wondrous benefits -- energy and mental acuity

E -- for skin but lots more too

[Andrea Barnett Budin]

Vitamin E -- heart healthy, helpful in oxidation in lungs, protects white and red blood cells, helps body's immune system. boosts stamina, protects from free radicals, and good for skin health and firmness.

[v-ness]

i take D3 - 10,000 daily, vitamin E and C and B12, turmeric, echinacea and matcha green tea. also, i exercise vigorously 5 days a week.
yeah 6 remission. :)

[Andrea Barnett Budin]

YAY -- 6...!!!!!!

I consider staying on my feet most of the day exercise.

Just not my thing, but another YAY for you...

[Andrea Barnett Budin]

Just read your bio. Crap has been coming your way wayyy too long.

Enough. Tell cancer to take a flying leap. Get out of my house. Out of my life!

And yet -- you shine, V. You are awesome.

[Juls]

Just finished reading pdf! A lot of good info.
Thanks Andi

[Andrea Barnett Budin]

Did you take notes?

Please share good info...

Always helps to get a refresher course...

[Juls]

Yes - I did.

Just need to decipher. Have filled a notebook in past few days!

[agness]

How about some astragalus?

"Astragalus boosts the immune system; but at the same time it seems to possess the ability to ´light up´ the rogue cells so that the immune osystem can ´see´ them better and attack more of them. Possibly for this reason, MD Anderson concluded in research with patients on radiotherapy treatment, that it could double survival rates. It may also benefit liver function, seems to reduce side-effects of chemotherapy, reduces metastic spread and increases survival times."

http://m.canceractive.com/cancer-active-page-link.aspx?n=536

[Juls]

Read about Astragalus last week - but forgot to note where I read it!

The article said
It is a potent cancer fighter
A powerful immune booster that increases your body's production of T cells, macrophages & natural killer cells.
In 1 study astragalus was able to restore immune function of 90% of the cancer patients studied.
In other studies patients had twice the survival rate of those who received standard therapy.

Also on canceractive.com last week & read section on Vit D - worth a read!

[Juls]

Just ordered some vitamins :-
Calcium with Mag & Vit K
Selenium
&
B12

to add to B6 & Vit D (1000IU) that I am already taking.
It's a start!!

[chrismosley]

hi I am new here. I was reading over these post and I came across someone named juls that said she was triple positive. I was wondering if you ever figured out which supplements to take.

I was dx in aug 2015 with Inavasive dcis stage 2a. It was her2(3+) ER+(95%) PR(1%). Mastectomy with node negative. As of now I am on Herceptin until Sept 2016 and tamoxifen for 5 years. I was premenopause prior to chemo,(ended in Dec 2015) but now I am not sure neither is my onc.

Any thoughts and /advice would be helpful.

Christine

[VDC]

I take Astragalus but combined with Glossy Privet. Glossy Privet is the common name for Ligustrum. These are in addition to other agents known to fight cancer. I decided to do research on supplements/herbs that may have some anti cancer properties. After researching them, these are the ones that I chose to add to my repertoire of supplements. I chose them NOT for their immune system building ability but instead for their anticancer properties:

Astragalus
Glossy Privet
flax seed oil
grapeseed extract
primrose oil
Curcumin (Tumeric extract)
Green tea extract
cranberry extract
SDG lignan (flaxseed lignans)
Trans resveratrol
Melatonin

Where possible I take the dosages that were used in the original clinical trials which is usually more than what is stated on the bottles.

I also take the following herbs, but these are for lowering of glucose: (The Berberine seems to be the most effective for me)

Cinnamon
Berberine
White Kidney Bean

I also take the following prescriptions for other reasons:
Atorvastatin (high cholesterol)
cyclobenzaprine (muscle pain)
levothyroxine (low thyroid)
combipatch (was for hormone replacement)



These are the incidentals:

Vit D,
coenzyme Q,
plant phytosterols.

I also consume the following EVERY day because some research indicates these two may help fight cancer:

2 tablespoons flaxseed
1 oz pecans (and I HATE pecans)

[Juls]

Hi Christine
I'm triple positive juls!
Her2+ (3+), ER+(7) & PR+ (5). I wasn't told how strong ER/PR+ I was until recently.

I am still trying to work out which supplements best for me to take. Some anti- oxidants may not be good for me. Have found a lot of info that is good if ER/PR- but not so much for positive. So far I am taking Vit D (since Aug 15) which was mainly because I read a report on Femara and it was recommended that you take Vit D. Since then further research suggests VIT D a must! Now added in Calcium with Vit K. Should have been taking Calcium sooner because Calcium was low in blood reports. Stupidly I didn't "join the dots". Apparently Femara also affects calcium levels. Have just bought Vit B12, Selenium and AHCC (mushroom compound). Just started taking B6 last week.

I am reluctant at times to adding anything else in so still researching. Looking at turmeric and astralagus next. I know this is really silly when you allow chemo into your body but question vitamins!!
Juls


Any suggestions from other triple positive & taking vitamin supplements welcome!!

[StephN]

Finally got a chance to catch up with this thread. So many good ideas for helping our bodies along during and after chemo.

I was clearing out old tax information and found all the prescriptions that I had to take for the side effects of adriamycin and taxanes. What a nightmare to revisit all that!

Folic acid was one thing I took all through my treatments. My med onc insisted. Now you can get it over the counter, but maybe it was the dose and assurance of purity that was the reason I got it from my pharmacist (over 15 years ago).

No one has mentioned either milk thistle or alpha lipoic acid so far. I have been taking those for many years.

Biotin is another thing I have taken in combo supps. Right now the Alpha lipoic that I take has biotin.

Just more "food" for thought.

Oh, and I forgot to mention that I drink organic ginger tea, which is great for digestion and against inflammation.

[StephN]

I did notice ASTRAGALUS mentioned above. I also take a capsule of this almost every day.

Figure my immune system is what has to carry me now that I have been off good old Vitamin H for so long.

[Juls]

Just re-read this post & realise still not added much to my vits and supplements. Still researching!!
Now taking B6, B12, Calcium and Vit D3.
Should be taking Vit K2 and magnesium when taking Calcium and Vit D3 - so will look into this.
Just read
The Vitamin D solution - Dr Michael Holick
Defend your life - Susan Rex Ryan
&
The miraculous results of extremely high doses of the sunshine hormone Vit D3 - Jeff T Bowles. (available as an E-book & it is updated frequently)
A lot of interesting info!
I'm amazed at the connections and importance of this Vitamin which is really a hormone. Maybe name should be changed to reflect how important it actually is!!
Juls

[donocco]

There was a Danish study way back in the early 1990s. A few patients who had previously received chemo were given Q10 at a dosage of 390mg daily. In a bout 4 patients the mets of stage 4 breast cancer disappeared. You would think this would be front page news, but few know about this. Anybody with a computer can look it up.

With supplements what I really about is the FDA. They have been trying to get Vitamins and supplements off the market for decades. The reasons are legion. Maybe it has less to do with kissing big pharma's behind and more to do with the fact that they cant control supplements. It may be an ego thing.

Whatever the reason, they made a big try in 1994. They wanted to make 1000mg Vitamin C and 400mg Vitamin E prescription drugs along with banning other OTC supplements. There was a public outcry and Congress was threatened, probably with non reelection and Congress forced the FDA to back down. I'm sure they will try again.

What I am going to say I have to say with some care. There seems to be a phenomenon with all canxcers where blood levels show excess copper compared to the zinc level. When you make a ratio of copper level vs zinc level in cancer patients the ratio favors the copper. The more advanced and aggressive a cancer is the higher the copper to zinc ratio. A normal copper/zinc ratio may be 0.8. A patient actually dying of cancer may have a ration pf 2.2. Its amazing. You could have 900 women patients in a room. 300=no abnormal lump, 300 a benign lump and 300 a malignant lump.Lets say you do a copper/zinc ratio of all 900 women. The no lump women might have a ratio averaging 0.9. The benign lump women a ratio of 1.2. The women with cancer might be 1.5 and higher. It would be foolish to do this, but you could probably diagnose 92% of the malignancies just by the copper/zinc ratio.

I'm sorry this is so long. Hopefully it will be interesting to a few. Anyway I wonder if zinc supplementation orally would aid in cancer treatment. I cant say. Yet it makes logical sense. So a patient goes to CVS and buys zinc tablets today 9/15/2016. The tablets will say on the bottle expires 6/2019. That is a legality but the reality is that the zinc tablets will probably be effective if kept away from light and heat when your great grandchildren are alive. Most of these expiration dates are political not chemical. This was proven by the Veterans administration years ago. They tracked the efficacy of expired prescription drugs five, ten years after the expiration date and found little loss of potency. This can be easily checked on with some computer research. The VA begged the FDA to let them use these "expired" but chemically active drugs. The FDA gave a flat no!.

People are going to have to read between the lines. You have to weigh to facts. There is the possibility of many of the supplements you feel are helping being taken off the market by the FDA. You also have to consider that the supposed expiration date put on the bottle of Matake mushroom capsules (for example ) may be more apparent than real.

Paul

PS For those interested, look up that Danish 390mg Coenzyme Q-10, liver mets disappearing study. It may be wise to increase the dosage of Q10 to 400mg a day. Just a suggestion. Of course you should discuss this with your doctor. Please forgive the length of this post and any misspelings

[Juls]

Hi Paul

I hoped you would reply!
I think you would find a lot of info in these books interesting although I'm sure you already know most of them.
Big Pharma mentioned quite a bit especially in "The miraculous results.." book.

With regard to Vit D the author in the above book mentions that no patent on Vit D and therefore no money to be made. So no major study being done on the benefits of Vit D.
He also mentions 3 cancer drugs that are made of high doses of Vit D!

The book is more of a conversation with the author and his thoughts. He does say that he has looked at various studies, particularly on pub med & analysed statistics.
Unless I'm totally losing it!! A lot of the info seemed to tie - up and make a lot of sense.

Once I get my head round the info & if anybody interested! - I will post some of the findings.

Regards
Julie

[Andrea Barnett Budin]

On my way out and caught this. Hi all.

I never touch vitamin A or K. Too much bad stuff associated with it. And you know how many dozens of supplements I take daily (since 1998).

I take D becuase as we age (and maybe when on chemo) our organs demand more D3.

I ask to have my D3 tested w/ev 6 mnth bld tests. Doc includes in the list with tumor markers and all else. I also request B for B12.

Turns out for me D3 is normal but way low.

So I now take 10,000 daily.

At once time they recommended 50,00 a wk and had a pill made of that mg. I always decline to take large dosages. Better to spread them out, according to my integrative oncologist.

i.e. I take 150 mg co enzyme q10 -- 2 x a day vs 300 all at once.

ALWAYS KEEP WELL HYDRATED ! ALWAYS , ALWAYS , ALWAYS.

8-10 glasses of water a day. Soda doesn't count.

BE WELL...

Love,
Andi

[Juls]

Hi Andi

Good to hear from you.

I also avoid Vit A!

Haven't looked into Vit K yet so interested to find out about it now!!

I have been taking Vit D daily but only had level tested once. Not a routine test here in UK & think it should be! When tested I was at 70 but had been supplementing so no idea what it was before. Also would have been interested to know what level was when 1st diagnosed. I would like my level to be between 80 - 100. Some research suggests that when you have cancer or chronic illness optimal level is 80-100.

Last year the Scottish Health Board issued a statement about Vit D and stated that all in Scotland should take a Vit D supplement. Someone with a medical background said that if the board suggested this they know more than they are letting on!!

Food for thought!!!

Julie

[Paula O]

I just saw these links on "Turkey Tail" mushrooms:
http://www.naturalhealth365.com/paul-stamets-digestive-tract-1366.html
http://releaseprostatecancernow.blogspot.com/2016/01/potential-new-natural-cancer-treatments.html?m=1

Anyone here taking Turkey Tail (also known as Yun Zhi in traditional Chinese herbal medicine).

Can anyone share what they are doing with supps to prevent and treat chemo associated neuropathy and for it's properties to fight breast cancer? I've been hearing positive things about Beta Glucan for neuropathy.

Anyone have a list of which herbal supps/vitamins which are generally contraindicated with chemo?

Thanks.

[TiffanyS]

I am looking for some ideas to boost my immune system, as I’m heading up north for the holidays, and everyone is sick with a cold! I’m hoping they will be feeling better by the time I arrive tomorrow afternoon, but that may not be the case. I can avoid some people, but not all. I sanitize my hands often, and I try not to touch my face, but I’m not allow to take Vitamin C supplements while I’m getting chemo, which is what I usually take to boost my immune system. I am allowed to drink orange juice, which I drink a lot of every day, even though I don’t like it, but I was wondering if there’s anything else on the market that I can try? I asked my nurse practitioner yesterday for a recommendation, but all she told me to do was to wash my hands often, not touch my face, and avoid sick people. That’s hard to do when the sick person is your mother and it’s the holidays! The good news is, my white blood count is normal, and since I didn’t get chemo yesterday, it should stay that way, however, I still don’t want to get sick. Does anyone have any recommendations other than Vitamin C?


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!

[Carol Ann]

Apart from supplements ... can you wear a face mask?

Carol Ann

[TiffanyS]

My doctor and nurse practitioner both told me that wearing a mask is useless in protecting people from getting sick, as you touch your face more when you’re wearing a mask. They said I should wear a mask when I’m sick, in order to prevent others from getting my cold, but not to bother when trying to avoid germs myself.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!

[Carol Ann]

Well, rats! :(

Carol Ann

[Mtngrl]

"Immune system" sounds like there's a discrete physical entity that one can tinker with and fine tune. Maybe it can be "boosted" with additives, kind of like those special fuel boosters they sell at some gas stations.

But actual, biological immunity and immune responses are complex, and they are affected by many things, including diet, rest, attitudes, beliefs, and the like. To me, just about everything I do is intended to support my ability to heal and my overall health and vitality--so I guess you could say I'm always trying to boost my immune system. Also, don't forget that there are autoimmune diseases, like type 1 diabetes, rheumatoid arthritis, gout, etc. The immune system can be an enemy if overstimulated or if it goes haywire.

I'm pretty sure it's a bad idea to conclude that just because a certain mushroom or supplement or tea had some kind of effect on cancer cells in a petri dish, that I should ingest a large amount of that stuff.

On the other hand, I'm pretty comfortable with having a colorful, fresh, unprocessed, mostly-plant-based diet with lots of herbs and spices. For one thing, it's delicious, and pleasure supports wellness. For another, there are epidemiological studies that show certain populations tend to be healthier than others. I figure it can't hurt to add turmeric, ginger, pepper, etc. to what I'm eating, or to eat foods like curry that use those seasonings.

I think one of the most under-appreciated factors affecting ability to heal is stress, and I think the people who are most vulnerable to stress are the ones who have issues with past trauma. Not to mention, of course, that having cancer, and being treated for it, are traumatic in and of themselves. Meditation, breathing, yoga, massage, psychotherapy, guided imagery and other practices can actually help rewire the brains of trauma survivors and help them heal from the chronic "fight/flight/freeze" limbic overload that increases the levels of hormones that cause inflammation and interfere with healing. Our minds, bodies, and emotions are intimately connected. For optimal health, we need to train our minds and bodies.

Most supplements are probably no more effective than placebos, but the placebo effect is a real effect. It's healing. I don't knock it.

I'm pretty sure the main reason I'm still alive and still fairly healthy 68 months after my stage 4 diagnosis is I've been getting drugs that have been scientifically proven to have anti-cancer effects. No amount of "boosting my immune system" would have done that. But I do what I can to enlist my own personal resources as well. For me it's more about emotional sobriety, having a focus outside myself, eating well, and being mindful than it is about any particular regimen of diet, exercise, supplements, etc. One of the things I'm trying to heal from is a tendency to over-plan and over-effort.

I'm trying to have the best life I can have in the time I have left, no matter how much time that is. My goal is not longevity per se but meaning. To me that means experiencing loving relationships, with myself, other people, and God.

[conomyself]

Happiness.

https://www.scientificamerican.com/article/how-happiness-boosts-the-immune-system/

[Mtngrl]

Dear "Conomyself,"

Fantastic article! Thanks for sharing.

Amy