Building our immune systems with Stage IV bc

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  • bama351
    bama351 Member Posts: 42
    edited June 2015

    This link from the telegraph article referenced above is a downer :(

    http://www.telegraph.co.uk/news/health/news/116427...


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

    Very interesting article, bama. I was aware that health writers often dramatize the results of research studies, but it hadn't occured to me that drug co. PR folks are behind some of these glowing headlines. Darn! That is discouraging!

  • Bosco19
    Bosco19 Member Posts: 221
    edited June 2015

    I think the Sikora article slightly misses the point. Of course the drug companies are talking up their drugs but the original article is carefully couched in conditional language - maybe, could, potentially and heavy use of inverted commas. The people I have spoken to (doctors not PR agents) are all excited that this is the beginning of a new line of treatment with great potential. - but not necessarily the complete answer for everyone. Still I'd take another couple of years of good QOL and who knows what else will come along?

    Sikora is right to say personalised medicine is something we should aim for - but that's not in opposition to immunotherapy - doctors need to choose the right immunotherapy for the right patient. He's also right to worry about costs - but surely if greater numbers use the drugs, the drug companies can recover their cost of investment at a lower retail price than currently. That's up to the main customers - in the UK's case, the NHS and the insurance companies - to negotiate.

    I still think we should focus on the hope coming out of this and not worry too much about the hype. I'd rather listen to my onc than the PR people.

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

    Bosco, Has your MO elaborated on anything? or just general excitement?  Thank you for your post and I agree with you. 

  • Bosco19
    Bosco19 Member Posts: 221
    edited June 2015

    Onc is a v eminent oncologist and well plugged in to the U.S. research as well as a leading light here. So I figure he knows what he's talking about. The anti pdl1 drugs have been coming for some time. He likes the science and he has been prescribing as soon as he was legally able to do so in UK with what he regards as good results. He says in a year's time (subject to cost) these drugs will be used and licensed across a broad range of cancers . But they are v expensive and not yet accepted by UK insurance companies.

    Seeing him tomorrow when he will just be back from ASCOso may learn more

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

    Thank goodness for this website that we can share what our MO's are doing.  MO is very nice but he is very cynical about these things.

    BTW that article is almost pro-dying, we all will die some day but I found it a little strange to be putting down the latest medications and talking about an assisted death and how Asians look at death. Almost like saying since this is not likely to work, we have this for you. Any one else feel that way also or just me?

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

    ML ~ I totally agree with you. From that rather strange article, I thought perhaps Sikora was an expert on death and dying, or had some other weird axe to grind. When I Googled him just now, I was surprised to learn that he's an esteemed onc in the UK. I may read the article again to try to figure out his viewpoint. But OTOH, I found it a downer, and kind of skimmed it after the PR stuff.

  • Rose07
    Rose07 Member Posts: 8
    edited June 2015

    Thanks for the info, but, what is the mushroom? S it a pill form you can buy in the herbal store?

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

    I tend to agree with him. And I don't think the article was a downer, just realistic and even upbeat on personalized medicine. A few more months of survival for the median is nowhere near a cure. But some people do get a lot more out of these drugs. But this is again nothing new. Why don't we learn that lesson already? Stop gambling on patients. Try to figure out already who will respond to what. We now have the computing ability. We need to gather data and mine them, do simulations of different genetic/biological scenarios. There is still a lot of work to be done, but I have to believe it is doable. Just my 2 cents.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3653811/

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

    Thanks for the link, Heidihill. And thank you for your take on the other article, which I still need to reread, and will now with your comments in mind.

    Rose07, yes, the mushrooms we've been discussing are supplements available in health food markets mostly in pill form, or liquid extracts -- and that's because most of the super immune building mushrooms are scarce ones you won't normally find fresh. I also eat fresh mushrooms, as well as onion and fresh garlic and a variety of berries and things like pomegranate seeds almost daily. Not sure if there's any scientific proof that fresh mushrooms like portabella or crimini build immunity, but I believe they're good for us.

    Oh, and speaking of immune building foods, here's a photo of some of those dried oranges I mentioned at the start of this thread.

    image



  • starbrightlyshines
    starbrightlyshines Member Posts: 344
    edited June 2015

    I asked my Dr about metformin and he said he had heard of it's use for bc. But I don't think he is looking at the big picture because he agreed to order a test that looks at my long term glucose levels and if they were high he would consider using metformin. Well, I don' t have a problem with my glucose so I don't forsee it coming back abnormal. I think I am going to have to do some more reading about it myself before I present it to him again. Any thoughts?

    Also, I keep wondering about how much sugar is a factor. If we know that sugar feeds on glucose more than normal cells (per PET scan results) why wouldn't the medical community advocate for low sugar diets? My Dr doesn't seem to think this is much to be concerned about. It doesn't make sense to me.

    Romansma-I am anxious to see how the infrared saunas go. I had read about their use several months ago. I don't think there are any in my area but it seems like an easy thing to try if it is available.

    I also read about the citrus pectin, I don't remember why now but I cracked up at the photo of the box of orange slices! Can't you get the citrus pectin already liquefied or is it more benefical to eat the whole slice? Let me know, I am really curious!

    I have been trying to eat more vegetables that promote angiogenesis......like celery. It should be an easy thing to incorporate into my diet but I have to admit I just don't cook or eat much these days. It just seems like too much trouble. But I try to cut up veggies or fruit and that makes it easier.

    And I do take a turmeric (cucurmin with pepper and something else) supplement everyday. It is said to be anti-inflammatory and I have always had severe allergies to everything fromd dust/pollen to gluten. I always wonder if this didn't somehow predispose me to cancer.

  • pearlady
    pearlady Member Posts: 882
    edited June 2015

    Rose you can buy most of the mushrooms in pill form.  I take Shitake, Coriolus, Reishi (not available fresh), and Chagra.  All individual pills. The Maitake D fraction is available as drops and is said to be the most effective form of Maitake.  Maitake is also used to help build red and white blood cells. I also take Kyolic which is garlic supplement available in pill form.  I would think that fresh mushrooms are great, but it would be difficult to eat the quantity that you would need.

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

    "Also, I keep wondering about how much sugar is a factor. If we know that sugar feeds on glucose more than normal cells (per PET scan results) why wouldn't the medical community advocate for low sugar diets? My Dr doesn't seem to think this is much to be concerned about. It doesn't make sense to me."

    Starbrightly- I think this link from the Mayo Clinic summarizes the current medical thinking about sugar in our diets.

    http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714?pg=2

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

    Starbright, from what I've read, the problem with refined sugar isn't so much that it directly feeds or fuels cancer cells (although I tend to imagine it doing that), but that it sets us up for other complex body interactions that do not benefit us when it comes to cancer and mess up our hormones, such as carrying too much weight. As I recall, there's a very good chapter in the book Beating Cancer With Nutrition, by Patrick Quillan, PhD, RD, CNS, that explains some of these problems in depth. My copy is packed away in storage at the moment, but you can pick up a copy very reasonably on Amazon, eBay or ABEBooks. http://www.barnesandnoble.com/w/beating-cancer-wit...

    Along the same train of thought... I also wonder about the honey I use in my green tea. Is there any reason I should try to cut it out? I like to believe there's a difference between natural and refined sugars like honey and maple syrup, but maybe I'm making excuses for my "sugar vice?"

    I know my dried orange "citrus pectin therapy" is a bit out there, but I take a lot of supplements already, so I figured it might be good to get citrus pectin from a whole food source. And since pectin is mostly in the pith of the skin -- something we don't normally eat when we eat a fresh orange -- dried oranges seemed like a way to get it.

    And I agree with you about pre-existing conditions that cause inflammation maybe playing into our susceptibility to developing cancer. I know I went for years with IBS issues that I suspected were related to wheat. But it wasn't until I was tested (post bc dx) that I learned that I have a severe wheat intolerance (just short of celiac disease). So I lived for years with IBS discomfort, never realizing what a toll the inflammation was taking on my overall health.

    Pearlady, following up on your comment about quantities of healthy things like mushrooms... Has anyone else ever marveled at how tiny something like an Anastrazole/Arimidex pill is vs. how much benefit we get from it? I think about that almost every time I pop mine -- that such a tiny amount of anything can affect such drastic changes in our bodies!






  • pearlady
    pearlady Member Posts: 882
    edited June 2015

    Dlb my onc prescribes Metformin for almost all of his patients that can take it.  I am on the brand name Glucophage since I had terrible stomach issues with Metformin, but Glucophage produces no side effects for me and my insurance approved it.  Have heard, however, that there are some generics, particularly by Teva, that are tolerated well by most people.  I take 1000 mgs daily. 

    There is also a supplement, Green Coffee Bean by Jarrow which helps regulate your Glucose.  I take that twice a day before meals.

    The interesting thing about Metformin is that it tends to work better for anti-cancer on people who are not diabetic.  My blood sugar is so much lower than it was prior to the Glucophage. 

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

    I have those same lousy side-effects with all brands. Metformin, Glucophage and Glycon. Is there a fourth option I could try? If I have to deal with the side-effects, I will, though it'd be nice not to.

  • starbrightlyshines
    starbrightlyshines Member Posts: 344
    edited June 2015


    Pearlady-do you have a study I can show my Dr to back up the Metformin usage? He is open minded when I bring things up but bc is not his specialty (he is a general onc) so I feel like I need to be the one to show him the research.

     

  • pearlady
    pearlady Member Posts: 882
    edited June 2015

    Starbrightly shines I know that there are clinical trials being conducted with Metformin.  I think the dosage in the trials in 750mg daily.  I know that many oncs are prescribing but there are also some who refuse to prescribe.

    Leggo have you tried the Teva brand?  I've heard that is well tolerated by most people. 

    http://www.hindawi.com/journals/bmri/2015/548436/
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4200668/

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

    I'm feeling very impatient about immunotherapy. I soooooo hope I will be around to see this come to fruition.

    What do you mean by hydrotherapy?

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

    Pearlady, do I word it that way when I'm asking for it? Do I say I want the Teva brand of metformin? Sorry about the questions, but I don't want to look like a PITA when I ask my doctor for yet another brand. 

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

    Thanks for the update on Metformin. I was really interested in this a few years back, but the studies seemed to fizzle out. I have a bottle of Teva 750 mg ER. I've tried to start back on it a couple of times and I get nauseated for a full day each time. Any pointers on what I can do to make this a little easier? I should point out that I can take many side effects, but nausea seems to be a deal breaker for me! I hate feeling sick!

    Thanks again for all the great information!

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

    Are you feeling better, Romansma? Was it the metformin that caused the problem, or was that another time.

  • pearlady
    pearlady Member Posts: 882
    edited June 2015

    Romansma I never had the nausea, so I guess we're all different  I had horrible diarrhea from the Metformin and also from Glumetza (another generic).  Unlike other drugs where the side effects sometimes get better in time, this never did.  Was really awful. I agree with you that nausea is awful, but for me, the big D is absolutely the worst.  Hate to get caught with 30 seconds to get to the toilet which happened more than once.  

    Are you taking the Metformin with a full meal?  That is absolutely essential.  When I initially stopped the Metformin due to the side effects I took a two year break.  My tumor markers did increase while off of the Metformin.  I started back on Glucophage and they did go down again.  For me, the brand name Glucophage has been great.  No big D.  I did a lot of research on this and it was recommended that if you failed on one brand of Metformin you should keep trying.  That they were all different.

    A woman I know went for a second opinion recently to a top oncologist at Columbia Presbyterian here in NYC.  She is currently only taking 500mg a day due to other drugs she is on and also the big D.  He told her that the studies have shown for the Metformin to be effective you need to be taking 750mg. 

    Leggo I would start by asking my Dr. for the Teva.  Not sure if all pharmacies stock all brands but I know a few women who are taking the Teva and it is readily available.   In the case of the Glucophage, which is the brand name, the prescription has to be filled in Dispense as Written (DAW).  Many insurances will approve the brand name if you have had difficulties with two generic. 

     

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

    Thanks, Sandilee, feeling quite a bit better today. Still getting waves, but yesterday was pretty awful. No, It wasn't the Merdormin this time. I tried it a couple of times in the last 6 weeks or so and just felt awful the following day. Pretty sure I took it with a full meal, but when I get the courage to try again, I'll make sure to eat some pizza. Not!


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

    Thank you Pearlady. 

  • Teakie88
    Teakie88 Member Posts: 226
    edited June 2015

    Just wanted to pop in for a minute to mention in one of my previous posts on this thread that my oncologist would be attending a cancer seminar in June. She was going to the one that was held in Chicago this past weekend, but her son graduated that weekend so she couldn't attend it. However, she told me a couple of days ago that she will be attending an all-day seminar at Washington University Hospital in St. Louis where all the major highlights of the entire Chicago conference will be discussed. She said it is a much better learning environment because she said you can't attend all the sessions offered at the big conferences. Anyway, whenever I see her next month in July, I told her I wanted all the info she could give me on what she learned about any new breast cancer info and what the latest is on immunotherapy. I'll be sure to post whatever I find out when I know more. Ann

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

    Ann, Thanks again.

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

    A friend just mentioned this book in a FB group we're both in, and I'm wondering, has anyone read it? It looks great!

    http://www.drkellyturner.com/

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

    There is a thread on this https://community.breastcancer.org/forum/8/topic/819272?page=2#post_4067614 but it will be interesting to see if more women have read this book since this thread was started.  I have not read it as of yet.

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