Boosting Your Immune System - share your ideas
 

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.

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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!!

Re: Boosting Your Immune System - share your ideas
 

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-...tency-60-vcaps
http://www.integrativepro.com/Produc...mens-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.

Re: Boosting Your Immune System - share your ideas
 

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!!

Re: Boosting Your Immune System - share your ideas
 

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.

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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.

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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!

Re: Boosting Your Immune System - share your ideas
 

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

Thanks so much for posting this!!

Carol Ann

Re: Boosting Your Immune System - share your ideas
 

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.

Re: Boosting Your Immune System - share your ideas
 

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.

Re: Boosting Your Immune System - share your ideas
 

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?

Re: Boosting Your Immune System - share your ideas
 

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!

Re: Boosting Your Immune System - share your ideas
 

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

Beautiful picture of you, Tracy!

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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

Re: Boosting Your Immune System - share your ideas
 

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.