Nov 28, 2019 12:03AM - edited Nov 28, 2019 12:47AM by thisiknow
Don't like the side-effects of CHEMO? Then read this....
Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.
Posted on: Nov 21, 2017 12:31AM - edited Nov 21, 2017 12:35AM by Lumpie
I watch for research news on breast cancer, treatments, etc., and frequently see interesting articles. There is a topic on BCO called "Breaking Research News from Breastcancer.org." One of the moderators suggested that another topic might be appropriate for posting links and synopses of reports on research found elsewhere. So here it is! Please post links to reports on research form reliable sources. Thanks for sharing!
Posts 1651 - 1680 (1,680 total)
Nov 28, 2019 12:03AM - edited Nov 28, 2019 12:47AM by thisiknow
Don't like the side-effects of CHEMO? Then read this....
Nov 28, 2019 01:53PM lala1 wrote:
Hmmmm...." A lower level of piperin...."were observed in plasma from women who subsequently developed breast cancer." This is the ingredient that they say should be in your turmeric to make sure it carries through your body. That's why I take the Gaia brand. The piperin is already in it. My holistic doctor and my PCP both are very strong believers in turmeric to help prevent BC. This article seems to support that.
Nov 28, 2019 05:05PM marijen wrote:
Very interesting observation Lala. Here’s an article on benefits of perine, bioperine, peperine
Nov 29, 2019 05:01PM BevJen wrote:
Interesting article. It's also worth it to read the comments, especially the first one. The patient did not continue her treatment, regressed, and subsequently passed away a while later. However, this methodology of treatment still seems promising if one would stick with it.
Nov 29, 2019 09:32PM BevJen wrote:
I think the theory behind the treatment still seems promising. It ties into a lot of things that I've been reading. So it was worthwhile to post!
Dec 1, 2019 09:17AM lala1 wrote:
marijen---I didn't have chemo or rads but my doctors did say that if I had, they would not have let me take the turmeric. That article you posted pretty much explains why. As with everything, it's best to run it by your doctor first before you take anything. (Then do what I do and run it by everyone on these boards who I've decided collectively know more than all the doctors!)
Dec 1, 2019 10:23AM santabarbarian wrote:
Re "run it by your doctor first"-- YMMV.
Unless the specific MO is *also* trained and experienced in complimentary practices, they will often say a blanket "no" to antioxidants as there are not double blind clinical trials proving their safety and helpfulness. (My home town MO said the same.) I also went to an Integrative Oncologist for a consult, and got very different advice. Due to his 30 years of clinical practice data, I had confidence in him and I followed his recommendations, which involved a boatload of antioxidants, including a heavy dose of curcumin daily. My hometown MO looked up every recommended supplement and found nothing contraindicating their use. I began the supplement protocol in early chemo and followed it throughout my treatment and am still on it. I feel insanely good-- no more aches and pains-- and I had a perfect response to chemo. Besides supplements I had an exercise regime and a diet regime. My home MO told me that he believes the complimentary practices made a large difference in my outcome. I was 3C by current rubric... 3.8 cm TNBC tumor and 3 cm lymph node. Grade 3. Got a pCR. It makes me so frustrated when I hear comments warning about supplements from non-specialists. I think they helped me beat my odds -- and so does my former-doubter MO.
Dec 1, 2019 12:56PM marijen wrote:
Yes, it seems pointless to ask any of my doctors about supplements. Santabarbarian, was the integrative oncologist covered by insurance? Another problem is long term use of a lot of supplements can be very expensive. But I do believe they definitely improve health and fight cancer. I am taking quite a few.
Dec 1, 2019 01:42PM santabarbarian wrote:
Yes the Integrative Onc (Dr Keith Block) takes insurance and can treat you from afar even; many of his patients fly in for their chemos. But not everything he does gets reimbursed (he does IV curcumin for example, which was not available in my town). I was tempted to go to him but the thought of getting on a plane to Chicago every 3 weeks just sounded too daunting. I was able to duplicate most of what Dr Block would have done in my home area. Some of his innovations are to give much slower drips and to "pulse" the chemo according to circadian clock; that was another I could not duplicate but the rest I followed to the letter.
The consult I did was actually a third opinion so I did not submit it to insurance. It was $1800 for a four part consult-- I spoke to three different people for one hour each re diet supplements exercise stress/psychological.... and then got 1 hour with the MO. After you do this you can get 15 mins with doctor for $150 any time for those pesky next-generation questions.
Best $1800 I ever spent.
Dec 1, 2019 02:04PM 2019whatayear wrote:
Thanks for the post SB - I am in the Chicago Area it is great to know this doctor is here. I am happy with my currrent MO and team - and she is pro supplements and integrative approaches to cancer treatment - and I'm on my last chemo so I am going to continue on with where I am and then see about the Block Center for their approach to cancer reoccurence prevention. My biggest accomplishment on this front so far is running throughout chemo :-) Thanks again SB!
Dec 2, 2019 02:15PM marijen wrote:
Lumpie, can you find anymore info on this one?Research team discovers drug compound that stops cancer cells from spreading
Dec 3, 2019 08:31AM lala1 wrote:
I also saw a holistic doctor when I first started treatment. I didn't have chemo or rads but had a pretty strong reaction to Tamoxifen including severe joint and muscle pain as well as nausea and dizziness that hit me pretty hard. This guy used to work under Dr Weil treating BC and has retired to my area. After my MO just kept saying take glucosamine the holistic doctor put me on Gaia turmeric, a good ginger and magnesium glycinate. Those 3 things made a huge difference. I saw him for a follow up and he suggested copious amounts of water to counteract the dehydration Tamoxifen causes. When I added that (along with my exercise/yoga regimen) I finally got relief from my SEs. My MO was very skeptical especially about taking turmeric but he researched it thoroughly and has become a believer as well. Heck I told my BS how I had suggested turmeric to my 82 year old dad who was looking at a double knee replacement and the turmeric took away all his pain, and my BS now takes it for his arthritis! These doctors will come around. We just have to keep pounding it into them!
Dec 3, 2019 03:05PM Lumpie wrote:Is the 21st Century Cures Act a Solution or a Problem?
The permissive drug approval process enabled by the 21st Century Cures Act may cause public health problems.
People use medications because they want to live longer and to feel better. Over the last few decades, FDA has put greater emphasis on measures of health outcome that are important to patients, such as length of life and quality of life.
However, drugs and devices are often evaluated on the basis of surrogate markers, including clinical lab tests that evaluate blood chemistry or tumor characters. These surrogates can be important if they are closely associated with health outcomes. But the surrogates are often uncorrelated with measures that are meaningful to patients.
the 21st Century Cures Act was motivated by the desire to speed up the drug approval process. It does that by allowing pharmaceutical companies to use surrogate markers rather than mortality and quality of life as evidence that their products contribute to longer or better lives.
the Act ... lowers the standards for the evaluation of medical devices
the Act... risks allowing drugs to be licensed on the basis of preliminary studies.
....the FDA process is slow and inefficient. But high standards used by FDA evolved because of terrible disasters such as thalidomide, diethylstilbestrol, and the Dalkon Shield intrauterine device. Cures are important, but so is safety. The 21st Century Cures Act is deserving of our continuing scrutiny.
Dec 3, 2019 03:56PM Lumpie wrote:Fewer Late-Stage Cancers Found With Annual Vs Biennial Mammography
Cancers detected in women who undergo annual mammography screening are smaller and less advanced than those found with biennial screening, according to a retrospective study.
Dec 3, 2019 04:46PM Lumpie wrote:Actionability of HER2-Amplified CTCs in HER2-Negative Metastatic Breast Cancer
Dec 4, 2019 05:05AM Lanne2389 wrote:
Santabarbarian, would you be willing to post your supplement regimen?
Dec 4, 2019 08:49AM santabarbarian wrote:
If you search the Fenbendazole Thread, my whole list of supplements is on there. Most are antioxidants. All but Metformin are OTC.
Dec 4, 2019 07:11PM santabarbarian wrote:
Ok, sorry-- I can't find it either! Here's the whole program of what I did for complimentary stuff, most of it from Dr Block and a few things per a naturopath in my town. NOTE: I had TNBC which may make a few recommendations different. I also have NO underlying conditions or health problems that others might have that might contraindicate some of this. So, YMMV.
MORNING meds 500 mg metformin (taken for anti cancer purposes not diabetes purposes); 400 mg Vitamin E & 400 mg pentoxifylline - for post rads fibrosis prevention
EVENING meds 500 metformin, pentoxifylline, ashwaghandha 600 mg, Magnesium Citrate 500 mg, Niacin 500 mg, Melatonin 20 mg (work up to 20 mg slowly)
Other Supplements, which I split up am/pm mealtimes... I do rotate a couple of these in and out, and give myself pill free days here and there when I need them... But basically each day I take:
D3 5000 IU , ALA 300 mg, Wild caught Nordic fish oil ~2000 mg, Curcumin 6000 mg, Quercetin 2000 mg, Vitamin C 1000-2000 mg, Berberine 1000 mg, Luteolin 100 mg, Sea Buckthorn 500-1000 mg, Rose Hips 500 mg, Astralagus 2600 mg, Feverfew 760 mg, Selenium 200 mg, Ubiquinol 200 mg, Resveratrol 500 mg, EGCG (Green tea extract) 1340 mg, B6 50 mg, Om Reishi Mushroom Superfood 1500 mg, Super Greens Organic green powder 8g, Zinc citrate 50 mg, Calcium D glucarate, 81 mg aspirin Took organic whey protein isolate during chemo for extra protein when I felt food averse.
Pectasol modified citrus pectin: 3 scoops/day. best on empty stomach. Took for 2 weeks prior to LX surgery. Going back now to it due to my high AR+ and the recent trial results re prostate cancer. Doubt it can hurt and it might help.
A couple of these supplements, like the PectaSol, were not suggested by Dr Block but by a naturopathic physician I see. But 90% was via Dr Block. Pentoxifylline from RO. Astralagus came in recently for blood support on the rec of a BCO friend.
During chemo I also took 750mg L Glutamine on day before, day of, and day after chemo per Dr Block. Claritin 2 days prior to chemo day for 7 days. Also did Fasting mimicking prior to each chemo (not Dr Block but via Dr Valter Longo). Also did a ton of heat on my tumor & node (hyperthermia). Lots of heat for 2-3 days prior to chemo. Heat is very damaging to cancer cells at temps not damaging to healthy cells.
Dr Block recommended Interval training or other aerobically intense workout 3x week & pilates or yoga 2x week and also support or meditation to deal w stress. I did all that. Did intervals on the morning of chemo and did well on exercise until the last 2 chemos made me too breathless.
Dr Block recommends an organic pescatarian/vegan whole food diet favoring anti cancer foods (alliums, peppers, ginger, berries, greens, etc) Pre and probiotics, legumes, etc. LOW egg, LOW dairy. I probably did a little too much of both of those but cut way way down from my former diet. I lost 30 lbs following these plans and feel FANTASTIC. No aches or pains that I used to have (I am 58).
Once a month, still, I take artemesinin suspension and ALA in am, then I get Hyperbaric Oxygen, then I go straight to my High dose C IV. I used to do this routine 2x a week during chemo but dropped back to 1x a month. after treatment. Also during treatment I got a few Vitamin D injections and a few glutathione injections. When in chemo, I would typically have chemo on a Monday, then do High dose C on Weds/Fri.
Dec 4, 2019 07:34PM - edited Dec 4, 2019 08:14PM by marijen
You must be GLOWING with health Santabarbarian! Thank you! (Saved) to my notes)
On the Metformin, I looked it up at my drug plan and it’s $117 per month. Does that sound right? And I’m wondering how hard it would be to get any conventional Oncologist to prescribe any proactive cancer drugs
Dec 4, 2019 08:06PM marijen wrote:Hospitals Sue Trump to Keep Negotiated Prices Secret
Dec 5, 2019 04:38AM Lanne2389 wrote:
Thank you SantaB!
Dec 5, 2019 04:43AM Lanne2389 wrote:
SantaB (sorry, one more question),
Which curcumin supplement do you use?
Dec 5, 2019 10:18AM santabarbarian wrote:
OK I am sorry lumpie to hijack your thread!! I think we need to get back to regularly scheduled programming but here are the answers.
1. I have been using Theracumin, which is by Integrative pharmaceuticals.
2. My MO gave me the metformin immediately when I asked. There is a lot of evidence on Metformin being a benefit in terms of less cancer/recurrence. It made me wonder why he had not suggested it!! On my Obamacare plan, my Metformin is only about $1 per month... but I might have a surprise next year when the copays re-start...
It differs hugely whether or not a MO is open to the off-label uses of drugs and whether they will embrace antioxidant supplementation. My MO is very conservative and was initially not on board. But getting my recommendations from ANOTHER MO might have blunted his skepticism a bit. And then he saw my outcomes. I had a 3.8 cm multifocal tumor in my breast and a 3 cm lymph node, grade 3 TNBC. He confessed later he would NEVER have predicted the outcome I got. Initially I asked him to explain the risks of antioxidants and of high dose C IVs. Mostly what he said is, "untested... we think it could possibly harm the effect of chemo... blah blah..." Since Dr Block has been using these supplements in his patients for decades with great results, I said, "Ok I have considered the risks and benefits and I am going forward." I wanted to be honest w my MO. To his great credit, he respected my ability to decide and he has been very generous in his comments about how much I helped myself and helped my outcome.
Many people doing off-label meds are going through the Care Oncology Clinic (COC)-- London based, but available in the US-- which has a 4 drug regimen they will give (doxycycline, metformin, lovastatin, and mebendazole). These 4 are based on Jane McClelland's work (How To Starve Cancer). When I asked my MO about it he said he would NOT give me any of the other drugs now because me being NED (risk/benefit analysis) but if I were fighting active disease it would be a different situation. The doxy and the mebendazole have risks when taken long term so he felt they are not worth it for prevention purposes.
Dec 5, 2019 03:09PM Lumpie wrote:Triplet Active in Anti-HER2-Exposed Metastatic Breast Ca Regimen well tolerated with reduced-dose gemcitabine
Dual HER2-directed therapy after prior pertuzumab (Perjeta) exposure was active and well-tolerated when combined with gemcitabine (Gemzar) for women with metastatic HER2-positive breast cancer, a single-arm phase II trial indicated.
Among 44 evaluable patients, 73.3% were free of disease progression at three months following treatment with the triplet regimen of trastuzumab (Herceptin) plus pertuzumab and gemcitabine (95% CI 61.5%-87.5%)
At 27.6 months follow-up, median progression-free survival (PFS) was 5.5 months (95% CI 5.4-8.2) while median overall survival (OS) was not yet reached. The 3-month OS rate was 100%.
One patient had a complete response, 20% experienced a partial response, and disease stabilized in 52% of the group.
"After three months of therapy, if patients were deemed to be progression-free, gemcitabine could be held at the discretion of the treating physician and patients were maintained with antibodies alone," the authors noted.
Treatment was continued until disease progression or the development of unacceptable toxicity. The median duration of treatment was 20.8 months
"Our findings support the advancement of phase 3 trials comparing the efficacy of regimens containing trastuzumab and pertuzumab with standard and novel ERBB2-directed treatment in patients previously treated with this dual-antibody combination."
Dec 5, 2019 03:25PM Lumpie wrote:
Hi Folks. I was traveling for Thanksgiving with minimal internet access. Hope everyone celebrating had a nice holiday.
I note that there has been a lot of discussion about supplements. I think that discussion would be more appropriately moved to a forum on the topic of supplements. I know that this is a topic of interest to many so I searched to see if could find one. To my surprise, I did not see much. Here are a few possibilities:
Seems to me that a forum specifically discussing supplements would be worthwhile if anyone is interested in starting one. I think there would be a lot of interest. Scientific evaluation of supplements can be spotty so guidance and direction to meaningful resources/research would be a great way to support one another.
Dec 7, 2019 09:10PM BlueGirlRedState wrote:
Lumpie - I like the idea of a forum dedicated to supplements. What a person takes and why., brands they like etc. Do they let the Oncologist/DR know what they are taking, and is the DR supportive or have any opinions. Usually the information on supplements is included on what ever forum someone is posting to. So information can be very scattered - but I'm finding this to be true of the forums in general. An ND recommended green tea (alot), a mushroom powder, among other supplements for my cancer. For the most part, my oncologist feels I should get as much as I can from real foods, and not supplements ( I agree, but sometimes it is hard to get "enough" of a particular substance in food). She also exressed some concern about the mushroom powder, since not mush is known about interaction with other drugs. I do take a number of supplements (mostly vitamins).
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.