Building our immune systems with Stage IV bc

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  • pearlady
    pearlady Member Posts: 882
    edited May 2015

    Annieoakley my onc recommends Squalene (shark liver oil) to boost white blood cell counts along with Maitake drops, which is said to help build both red and white.  Also, the holistic pharmacist recommends blackstrap molasses which helps to build both red and white blood cells.  Also Astragalus as Dlb has mentioned has been recommended by my onc. Twice a day between meals.

    Dlb many of the supplements that I take are by Thon, which is known to be one of the top manufacturers.  All are recommended by my onc.  Regarding the Glutathion, I think I get 500 mg each week, but that may not be right.  I will check the next time I go and let you know.

    Jenn I am definitely going to check the Transfer Factor, since I take all of my mushroom supplements separately, ie Maitake drops, Shitake, Chagra, Coriolus and sometimes Reishi since it's suppossed to help to calm you and facilitate sleep.

    I just want to mention that my onc recently published a book called the Gene Therapy Plan . I've attached a link if anyone is interested. 

    http://genechanger.com/gene-therapy-plan-taking-control-genetic-destiny-diet-lifestyle/

  • annieoakley
    annieoakley Member Posts: 870
    edited May 2015

    pearlady, thank you so much for all the valuable information, I truly appreciate it and have always been inspired by you and your posts. I think you're doing something right and I truly believe we need to be integrative in our approach to dealing with Stage IV breast cancer. Thanks again, Annie

  • pearlady
    pearlady Member Posts: 882
    edited May 2015

    Annie I also believe that we need to be integrative in our approach, both at Stage 1V and at earlier stages.  I truly believe that the integrative treatments have allowed me to tolerate the chemo with minimal side effects, maximum energy, and have helped me to maintain good QOL.

    I forgot to mention previously that I also take Merformin daily.  There have been studies that have shown that Metformin helps control the spead of the cancer.

    I love this discussion we have so much to learn from each other.   

  • annieoakley
    annieoakley Member Posts: 870
    edited May 2015

    pearlady, my onc put me on Celebrex to treat the horrible arthritis I am getting from letrozole/femara and said that there are recently published studies that it had an anti-cancer effect, an added bonus. I've heard of the Metformin studies and have thought of asking about it as well. I want to throw everything I can at this but want to make sure things don't interfere with one another.

  • VivianS
    VivianS Member Posts: 159
    edited May 2015

    Alkaline water - Do any of you find alkaline water does not quench your thirst. I don't know why, but I had to stop drinking it for that reason!


    About iron - I used to work as a nephrology nurse and I have done a lot of research on this subject as people with kidney disease struggle with anemia like people with cancer.

    Here is an interesting easy to read article about iron, cancer and angiogenesis: http://www.okayama-u.ac.jp/en/tp/release/release_i...

    When taken orally only about 85% of iron is absorbed into the body. IV iron is really the only way to go if you need iron, but that would be primarily for anemia from blood loss. The anemia related to chronic disease, cancer, and cancer treatments like chemo or radiation is due to many factors and the anemia is not always best treated by supplemental iron.

    We should avoid excessive iron concentration in the body because it is linked to cancer cell proliferation. You can get too much iron, esp if you receive a lot of blood transfusions, (Not good as you are feeding those thirsty cancer cells).However, having too little iron in your system is terrible for healthy cells and the immune system. It's tricky because If your iron levels gets really low in the blood stream it signals cancer cells to multiply and it produces an angiogenic factor called VEGF (cant remember what it stands for) Low iron = low oxygen (hypoxia). Hypoxia makes HIF (hypoxia-inductible factor) which causes tumor progression. The inside of a young tumor is desperate for angiogenesis because it lacks oxygen. Just think of the possibilities if we could disrupt these pathways!

    Cancer cells utilize more iron that normal cells and iron proteins are essential for DNA synthesis so genetics get involved. I think I read there is a link with HIF-1 and the HER2+ and the formation of the drug Herpecin, but I am not absolutely sure.

    Also you should stop taking iron if you have a bacterial infection because most bacteria, like cancer, thrive in an iron-rich environment. I would only take iron supplements if I was in not in menopause and/or bleeding. Fortunately, those days are long gone :)

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2015

    Vivian, what great information -- and so well explained!!! Thank you!!! I am constantly amazed at the wealth of knowledge here.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2015

    Paradoxically (to me, at least), exercise is one of the most angiogenetic things you can do. From all the exercising I've done through the years since my diagnosis I can see all the blood vessels that weren't there before! So it can't be that angiogenesis is always bad. Maybe it allows immune cells to get around or signal each other more easily?  Exercise does release anti-inflammatory proteins and maybe this accounts for the beneficial effect (although too much exercise can be proinflammatory). Is angiogenesis combined with anti-inflammatories good then (through diet, meds or supplements) or is it a different kind of angiogenesis you get with exercise to begin with? Or is the increased nutrition uptake through vascular expansion to hungry exercised muscles starving off cancer cells? Can cancers resistant to antiangiogenetic drugs be treated with anti-inflammatories (Celebrex or cortisone comes to mind)? Maybe these questions are for another thread.

  • sandilee
    sandilee Member Posts: 1,843
    edited May 2015

    Exercise also gets oxygen into your cells as well as getting your lymph moving and all of our systems functioning well. And of course, builds muscle and strengthens bones. How it works directly on cancer I don't know, but I it does seem intuitive that it's good for your immune system.

  • pearlady
    pearlady Member Posts: 882
    edited May 2015

    Good questions Heidi. I do recall reading that Celebrex may have anti-cancer proprties. 

    Exercise does increase metabalism which aids in reducing glucose levels.  And we all know how sugar feeds the cancer.

  • leggo
    leggo Member Posts: 3,293
    edited May 2015

    An informative article. I posted this link on another forum regarding matcha tea, but there are other very informative links regarding nutrition and the immune system so I thought I'd post it here as well.

    http://www.precisionnutrition.com/rr-green-tea-haz...


  • Romansma
    Romansma Member Posts: 1,515
    edited May 2015

    http://centerforintegratedmed.com/holistic-medicine/detoxification/far-infrared-sauna-therapy/

    http://www.rethinkingcancer.org/resources/magazine...

    I am still investigating and experimenting with this, but has anyone used infrared saunas to improve their immune system? My MO wasn't totally onboard with this because she feared dehydration. However, she was referring to traditional saunas that are much hotter and use moist heat/air. I don't think she knew much about how infrared works. I've only had 3 sessions so far. I am spreading them out so that I don't risk dehydration and so any detoxing that happens goes slowly and doesn't make me sick. With all the crazy drugs and chemistry I've taken, I can imagine detoxing could be a painful thing!

    Here is what I've noticed so far. On the day I take the sauna, I require less pain medication. In fact after the first sauna, I took my regular Oxy and had to go to bed because I felt so high. I believe this is due to increased blood circulation following the sauna. Of course, that made me wonder if other drugs are more efficient with improved circulation. I read here on the boards that someone used infrared saunas on the day of chemo to improve efficacy. I also notice a small increase in energy the following day. It doesn't last much longer than that, but possibly with more sessions, my energy level will increase. I know I've read that lessening the toxin load on your body can improve immune response. Studies have shown that infrared releases far more toxins in your sweat than exercise or even traditional saunas because the sympathetic nervous system is not activated as it is in exercise.

    Anyway, just exploring this and wondered if anyone else had any experience with it. If nothing else, I am just hoping to feel a little more energetic with a little less pain!

    Btw, someone mentioned Metformin. I was really interested in this a couple years ago. Has there been any follow up studies that have shown this to be helpful? How are you getting the Metformin off label?

    Thanks for all the great information. I have to say, my head swims with all this. I wish there was a simple way. You know, a daily pill with no side effects? Isn't that the American way? (sarcasm)

    Vivian, I just re-read your post on iron. I've never taken iron, but I cook with cast iron almost every day. I love the non stick heavy pans for heat distribution and that never get crusty and pealing like Teflon, etc. however, after reading what you wrote, I am questioning my use of these pans. Shoot.


  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2015

    Hope, where to you do the infrared sauna txs? Can you tell us a bit more about them?

  • Romansma
    Romansma Member Posts: 1,515
    edited May 2015

    I go to a local studio that also does hot yoga and a few other spa services. I bought a bundle so it wasn't as expensive. Single sessions are about $35, but by buying a bundle they are about $12 a session. This studio uses Sunlighten saunas, which use near, mid, and far infrared. The mix of infrared used enhances certain outcomes, such as for pain, detox, or weight loss.

    Hopefully, I can report back in a few weeks on any progress. I have heard from a handful of friends that they have benefitted health wise from regularly using infrared saunas. I'm still in the evaluation stage.

    The iron info really has me thinking about my cookware choices. I got rid of nonstick a long time ago, but making an egg in a stainless steel pan is a lesson in frustration. What does everyone else use? So much conflicting information on this.

  • Teakie88
    Teakie88 Member Posts: 226
    edited May 2015

    Just came from my monthly appointment with my oncologist today and was talking to her about immunotherapy. She is attending a cancer conference in June where that topic will be discussed. At my next appointment with her next month, I will be sure to enquire about what's the latest info on that research. Ann

  • MusicLover
    MusicLover Member Posts: 4,225
    edited May 2015

    Ann, John Smith just posted about that conference on his thread https://community.breastcancer.org/forum/73/topic/830016?page=1#post_4402715 . I am assuming it is the same conference.  It will be wonderful to hear what a breast cancer oncologist has to say about it.

    Thank you everyone for all of the info on this thread.


     

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2015

    Thanks Ann, and ML. And thanks for the additional info on infrared saunas, Hope. Who would have thought you could get a potentially immune building tx at a hot yoga studio?! What great things we're learning from each other!

    I follow several integrative docs, including Brian Lewanda, who is a Harvard educated MD. He's recently posted a few articles on immunity I thought were worth sharing. The article out of the UK is quite exciting, although it doesn't mention bc per se. But I love the line about the tx stunning doctors with its success, as well as, "We will see increasingly fast progress in this area as more results come through."

    http://www.express.co.uk/life-style/health/579536/...

    http://www.integrativeoncology-essentials.com/2012...

    http://medicalxpress.com/news/2015-04-mushrooms-bo...



  • Bestbird
    Bestbird Member Posts: 2,818
    edited May 2015

    dlb823, this is a fabulous thread!  Thank you so much for starting it, and for sharing your excellent research!

    To Heidehill's question about exercise, regular exercise tends to lower estrogen levels in postmenopausal women, which is a good thing!  https://www.fredhutch.org/en/news/center-news/2004/05/excercise.html

    I totally believe that diet and appropriate supplements (tailored to the individual) can play a key role relative to wellness.  A great book on the subject is "Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.  I also very much enjoyed - and learned things from - the Gene Therapy Plan video.  Artichokes, here we come!

    Finally, unless medically necessary, reducing iron and copper intake can have beneficial effects against cancer. 

    Lots to think about!

  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2015

    Pearlady and Bestbird, I forgot about those connections -- glucose and estrogen. Thanks for the link, Bestbird. I didn't know that about SHBG, that it works like an endogenous tamoxifen. 

    Regarding iron, I was getting iron infusions at my onc's office after chemo. So it's good to check iron levels first.

    Deanna, I love the one-shiitake-mushroom-a-day tip! I try to eat a lot of mushrooms in the winter for the Vitamin D. Now I'll try shiitake in the summer.

  • Romansma
    Romansma Member Posts: 1,515
    edited May 2015

    Pearlady, just took the time to check out the link you provided on the book your mO wrote. Great information. I went through much of the information on the website and it confirmed much of what I already know, but I learned a few things too. I think I will download the book. How lucky are you to have an MO with such an integrative approach. I am still searching for that, but need to keep my out of pocket costs under control. Anyone have an integrative oncologist in Southern California?

    Ok, need to get to my sauna session soon. Later today, I will try to get through some of the other info everyone here is providing. Keep it up!


  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2015

    Someone following this thread recently PM'd me with this link that I thought was an excellent one to share.

    http://www.telegraph.co.uk/news/uknews/10878625/Fa...

    Dr. Longo is a highly respected researcher at USC. His initial research, as I recall, focused on improving the benefits of chemo by fasting beforehand. Since then, he's expanded his research, as talked about in these articles.

    http://www.rodalesorganiclife.com/food/fasting-and...

    http://fitlife.tv/usc-researchers-discover-how-to-...

    http://www.thedoctorwillseeyounow.com/content/canc...

    Perhaps this is one more thing some of us will want to add to our arsenal of immune building therapies. Has anyone actually tried fasting for this purpose? I'm interested, but have some concern about losing anymore weight.


  • sandilee
    sandilee Member Posts: 1,843
    edited May 2015

    I remember reading about this for before chemo, but didn't know there was further research.

    I wonder. The medicine I'm taking now, Palbociclib with Letrozole, lowers the white blood cell count considerably, and obliterates our neutrophils. It took me three weeks off the medicine (one week is built into the protocol) for my white blood cell count to come back sufficiently to restart the next cycle of the medicine. I hope they are "new and improved" white blood cells and give my immune system a big boost! Wouldn't that be nice? Wouldn't dare try fasting on this medication, though. It would probably knock me out.

  • Romansma
    Romansma Member Posts: 1,515
    edited June 2015

    Speaking of fasting, I look forward to reading those articles. I'm on Ibrance too and very fatigued and very low counts consistently. However, I always feel better when I have been intermittent fasting. So, I started again about 10 days ago. Every other day, I fast for 16-18 hrs. It's pretty easy. I eat dinner and then I don't eat again for about 18 hours. That usually takes me to about lunch time the next day. It helps stop all the craving and I know it's because the fast aligns blood sugar better. Less craving = less sugar= better immune response. I have notice a tiny bit more energy lately. Not sure if it's my intermittent fasting or the sauna sessions. Wondering if the fasting helps the Ibrance effectiveness too? Hope so, I could use a little help!



  • Romansma
    Romansma Member Posts: 1,515
    edited June 2015

    Just finished reading those articles on fasting. Wow, I want a new immune system! Fasting could be a good way to get my perpetually low wbc back up. Now, to figure out how to do a 2-3 day fast. Not an easy task. Anyone done one successfully lately? Any tips? Did you do water only, or did you juice or drink broth?


  • Heidihill
    Heidihill Member Posts: 5,476
    edited June 2015

    I have also read that chemo can reboot the immune system. It's easy to see why. If you hit rock-bottom, as I did, your body has to create new immune cells. I saw the graph my onc was looking at when he almost fell off his seat in shock. That curve almost hit the x-axis. Of course, there is the risk that the whole apparatus gets broken. So I'd be cautious about fasting during heavy-duty chemo or other treatment that is hard on blood counts since there aren't too many studies on it. There's also the risk of dehydration.

    Exercise also can result in autophagy, which is what this kind of recycling is called. Doctors don't seem to have a problem with exercise during chemo though. Your body tends to know when you've had enough exercise while on chemo.

    Having said all that, years after chemo I did try intermittent fasting (7-hour eating window daily) together with high intensity interval training for a whole year (with vacation and weekend breaks). I did lose weight in that period but didn't notice any change in blood counts. 

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    Well, here's a blockbuster discovery!

    http://medicalxpress.com/news/2015-06-link-brain-i...

    I find this especially interesting because I know without a shadow of a doubt that my re-dx was very much influenced by something extremely stressful and beyond my control that happened in the 5 months leading up to it. It may have been brewing for longer, but the stress absolutely precipitated a crisis situation.

    Editing to add a thought, which is... How can we not be stressed when we are dealing with Stage IV bc?! When it comes to stress, it could be a no-win situation!

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    Just saw this on a new thread in the research forum and thought I would repost it here. It's dated today, but not sure if the info' is totally new or is referring to recently published research that concentrated on melanoma patients, and not sure why breast cancer isn't mentioned with the other cancers. But the message is still incredibly hopeful! http://www.telegraph.co.uk/news/health/news/116417...

  • bama351
    bama351 Member Posts: 42
    edited June 2015

    Thank you for the links.

    It does appear that immunotherapy could really be a game changer. I'm just worry about how long it will take to get it ironed out and into mainstream treatment.

  • Romansma
    Romansma Member Posts: 1,515
    edited June 2015

    Yes, I hope we get some turbo charged trials soon! Sign me up!

  • sandilee
    sandilee Member Posts: 1,843
    edited June 2015

    Me, too. They are making amazing progress with Melanoma and others, but it doesn't seem like they are fast-tracking the breast cancer immune therapy treatment. My brother passed away at age 50 from metastatic melanoma, and I am really happy for all of those who will be able to take advantage of this miraculous development. Unfortunately, it is coming 10 years too late for my bro.

    It may be my imagination, but it seems like the 100mgs that I am on now is a lot easier on me than the 125 was. No tiredness, no bloody nose or any SEs at all that I can discern. I hope my counts are hanging in there, too.

  • pearlady
    pearlady Member Posts: 882
    edited June 2015

    Yes definitely immunotherarpy will hopefully be a gamechanger.  But like all of us, I'm concerned with how long it will take to get to us. 

    Have heard great things about Hydrotherapy, especially for bone mets.  Romansma, thanks so much for the information on Infra-red Sauna.  I found several in NYC and am going to speak with my onc to see which he would recommend.  If he has no recommendations, I will do the research and definitely try it.  I love how I feel when I use the bio-mat which is also infra-red.


     

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