101 questions

I was just diagnosed with a recurrence of triple negative breast cancer to the chest wall and skin mets , possible leasions on lung. It has only been 6 months from end of treanmet. 4ac/4taxol bilat mast. and radiation. Craptastic. I have sooo many questions about what do this second time. Has anyone heard of or used IPT treatment or low dose chemo for mets. As this is now my new life I want to maintain the best quality of life. I have two kids 9 and 6 and need help know what to tell them about all of this and when to share it. Thank you

Report post

11 replies. Join the discussion

Hey....glad you posted out here....you can get multi options too... What is the IPT treatment you are referring to?
christi

Report post

"IPT" = "Insulin Potentiation Therapy"

This is a response from the extremely knowledgable 'gpawleski' (Greg) when I asked him about this (and low dose Naltrexone) in Feb 09.

By gpawelski
Posted February 21, 2009 at 12:55 pm
Report post
Groovy. What I know about Naltrexone would more in the line of low-dose therapy and antagonists.

Low-dose chemotherapy or potentiation therapy (IPT) makes cell membranes more permeable and increase uptake of drugs into cells. It selectively targets tumor cells, which ususally have more insulin receptors than normal cells. Makes tumor cells more susceptible to chemo by modifying cell metabolism.

As a result, cancer patients can greatly reduce chemo dosage (reduce it to only about 10-15%) and eliminate most side effects while increasing the effectiveness of chemo (chemo synthesizer).

Insulin is a powerful hormone with many actions in the human body, a principal one being to manage the delivery of glucose across cell membranes into cells. Insulin communicates its messages to cells by joining up with specific insulin receptors scattered on the outer surface of the cell membranes. Every cell in the human body has some of these receptors.

A healthy cell has about 1,000 insulin receptors per cell. Cancer cells have approximately 10,000 insulin receptors per cell. Cancer cells have a voracious appetite for glucose. Glucose is their unique source of energy and because of the relatively inefficient way cancer cells burn this fuel, they use up a great deal of it. Because cancer cells require so much glucose, they virtually steal it away from the body's normal cells, thus starving them.

Anatgonists act against and blocks an action (i.e. insulin lowers the level of glucose (sugar) in the blood, while glucagon raises it). I believe Naltrexone is used with receptor targeting technology.

Naltrexone is a receptor antagonist. Some drugs may be effective in patients whose cancers have a specific molecular target, but, they may not be effective in the absence of such a target. In addition, targeted therapies need approaches to determine optimal dosing, to assess patient adherence to therapy, and to evaluate treatment effectiveness.

One of the molecular pathways targeted in the treatment of solid tumors block receptor signaling within the cancer cell.

Targeted therapy has introduced several new issues for oncologists. Determining optimal dosing is one challenge. Some targeted therapies may only impart a clinical benefit by stabilizing tumors, rather than shrinking them (substituting shrinkage with stabilization).

To determine the dosing and effectiveness of targeted therapies, physicians are turning to pharmacodynamic end points, such as tumor metabolic activity on Pet Scans, levels of circulating tumor and endothelial cells (CTCs), and serial levels of target molecules in tumor tissue.

What could be more beneficial is testing those pharmacodynamic endpoints with the ability to measure multiple parameters in cellular screens now in hand using flow cytometry. Using a systems biology (cell function analysis) approach were compounds are first screened in cell-based assays, with mechanistic understanding of the target coming only after validation of its impact on the biology.

Many of these drugs cry out for validated clinical biomarkers to help set dosage and select people likely to respond. It could be vastly more beneficial to measure the net effect of all processes (systems) instead of just individual molecular targets. The cell is a system, an integrated, interacting network of genes, proteins, and other cellular constituents that produce functions. One needs to analyze the systems' response to drug treatments, not just one or a few targets (pathways/mechanisms).

There are many pathways/mechanisms to the altered cellular (forest) function, hence all the different "trees" which correlate in different situations. Improvement can be made by measuring what happens at the end (the effects on the forest), rather than the status of the indivudal trees.
........................................................................... ............
And from another forum, http://www.nosurrenderbreastcancersurvivorforum.org/printthread?id=3331862
- a reply by Constantine Kaniklidis
(of Breast Cancer Watch)
to a post on IPT (referring to an inspire post):

"Re IPT (insulin potentiation therapy), it was developed in Mexico back in the 1930's by Dr. Donato Perez Garcia, despite many putatively positive anecdotal case reports, and is another unproven cancer therapy for which robust human clinical evidence of benefit is insufficient. IPT uses insulin as a supposed adjunct potentiator of chemotherapy and agent, based on a putative enhanced sensitivity of cancer cells to insulin and insulin-like growth factor (IGF), with the additional claim that insulin increases the cell membrane permeability, hence increasing the intracellular concentration and cytotoxic effect of anticancer drugs.

But there is no clinical evidence for these supporting claims, not for the therapeutic efficacy of IPT in any cancer, and it remains at present without any proven or scientifically validated benefit.

What's important here is not that this is another questionable "cancer cure" - we have no shortage of them - but that in addition to and beyond being unsubstantiated, it flies against all current understanding brought to us by the most sophisticated techniques in clinical and translational oncology: robust evidence continues to accumulate suggesting that circulating concentrations of IGF-I and IGFBP-3 are actually associated with increased, not decreased, risk of many common cancers, including breast cancer, confirmed in several studies, meta-analyses and systematic review showing a correlation between circulating levels of IGF-I, IGFBP3 (IGF-binding protein) and an increased cancer risk, and further validated in the recent studies of Neeraj Saxena with the Winship Cancer Institute at Emory, David Kkleinberg at NYU, Krisztina Kovács de Ostrovich at MD Anderson Cancer Center, Andrew Renehan at Christie Hospital (Manchester), Sabini Rinaldi with the International Agency for Research on Cancer (IACR), Marc Gunter with the Albert Einstein College of Medicine, and innumerable others.

At this point, the overwhelming weight of the evidence implicates elevated insulin conditions - hyperinsulinemia - with the pathogenesis and tumorigenesis of breast cancer and with the migration and invasion of breast carcinoma cells both locally and metastatically.

And mounting evidence is moving massively in the opposite direction, namely of finding that anti-glycemic agents like the anti-diabetic drug metformin (Glugophage), and anti-glycemic diets, are recurrence and metastasis risk-reductive, the reason being, in part as I have hypothesized and brought evidence to support, via influence over the primitive development molecular pathway known as MTOR, which as I have predicted, along with the Hedgehog pathway family and their intersection with cancer stem cells (CSC), is the focal point of an explosion of translational and clinical research bringing us closer to a cure for breast and other cancers.

Deeply underlying pathways like mTOR and Hedgehog, Wnt, and Notch is, I predict, where we will find the answers. But in the present state of accumulated knowledge, robust scientific evidence speaks clearly: simplifying greatly, we want less, not more, insulin.

Finally, the blog you referred to is an unfortunate example of the amateur pseudo-science of what passes for scientific discussion on the Internet. The original poster, a BC patient, confronted with some reservations and cautions, responds typically: conspiracies (FDA and others) are insinuated by a perhaps well-intentioned but misguided and uncritical believer who is unable to assess the nature of evidence-based scientific critical appraisal, and others join and repeat the misinformation, even to the point that one proponent happily concludes in innocent but dangerous blissful ignorance that "there is a clear connection between insulin and cancer" - quite right, unfortunately it is an adverse one directly contrary to the claims of IPT, not the positive one he believes.

In conclusion, IPT remains an unproven cancer therapy until there are more methodologically compelling studies to begin to validate its benefit, and in the interim the evidence base suggests considerable adverse potential, as the balanced and objective Memorial Sloan-Kettering review suggests and the large and convincing evidence base support.
........................................................................... ..................
I hope that gives you some info on the subject!
xxxGGC

Report post

I'm triple negative too with mets to bone, lung and now (darn it) the liver. I don't think most insurances will cover it, even at the places the USA that do it:Chicago and So. Calif.... I did know of someone who went to Tiajuana, Mexico one time a month for many months and it kept it at bay, but when it finally went to stage IV, after an interlude -she went for conventional therapy. But, It certainly makes sense that that kind of targeted therapy would be less hard on the body, and I don't know why it isn't pursued or researched further.
To be honest, I might try it for first line defense ......but when it's stage IV, I think It best to (and I have) use the full guns.
Most therapies enable you to be functional just not quite at the previous level.
As far as telling the kids, you have to consider what developmental stage they are at, and give them the info a little at a time, and you'll have to repeat it too. There are many good books out there, but I think the best thing is to use your own mothering instincts. You can't scare them but they need to know 1)it is a serious disease, 2)that they had nothing to do with causing it and it's not catching either,(children do have overactive imaginations) and 3) and that you're going to fight it so that you guys can always stay as a family, but 4)you might be tired more and not be able to do everything with them like you used to. I am so grateful that my youngest was 16 when I first found out about the cancer and.....she's 22 now and will graduate college in Dec. and is a wonderful woman. Now I'm concentrating on the grandkids:)

Report post

There is really valuable information for you at http://nosurrenderbreastcancerhelp.org/breastcancer101/TNBC/TNBC.html - which contains masses of info on TNBC, including PARP Inhibitors, and the following on what I think you may have enquired about as 'low dose chemo' - see:

"Metronomic Chemotherapy"
There are several other options for triple negative therapy, and one of the more interesting outside of clinical trials is from Robert Livingston[58], chair until this year of the Breast Cancer Committee of SWOG (Southwest Oncology Group) at the Arizona Cancer Center, who uses a base of metronomic therapy of lose-dose AC (using continuous daily oral cyclophosphamide (Cytoxan)) with G-CSF support followed by weekly paclitaxel in order to leverage antiangiogenic activity given the critical role of angiogenesis in triple negative disease, adding other chemotherapeutic agents to this base as needed, including the possibility of an added platinum or an antitubulin combination such as a nab-paclitaxel (Abraxane) and vinorelbine (Navelbine) regimen (Robert Livingston is the "father" of metronomic therapy in breast cancer, which leverages low-dose frequent or continuous schedules of oncotherapy to both induce angiogenic inhibition and to avoid the potential for tumor regrowth during the traditional chemotherapy breaks or rest periods, also reducing toxicity, and Dr. Livingston appropriately received a piano metronome for his 25 year service in the field from SWOG). Paul Walker at East Carolina University is conducting a Phase II clinical trial of a neoadjuvant metronomic chemotherapy for triple negative disease[59], where women with a diagnosed triple-negative disease, confirmed on a core biopsy and larger than 2 cm, will be treated neoadjuvantly with the what is now come to be called, appropriately, the Livingston metronomic regimen of 12 weeks of weekly doxorubicin 24 mg/m2 and daily oral cyclophosphamide 60 mg/m2 followed by 12 successive weeks of paclitaxel (Taxol) 80 mg/m2 plus carboplatin.
........................................................................... ..............

Lots of TNBC articles follow the dietary advice at this link: http://foodforbreastcancer.com/articles/what-should-triple-negative-breast- cancer-patients-and-survivors-eat%3f

And don't miss: http://breastcancer.evidencewatch.com/
........................................................................... .................
My kids, just turned 8 and 10, and I have kept them 'in the loop' since diagnosis in Dec 05. I've kept details at a level they can understand; used analogies to educate them about the immune system, cancer, how medications work and the impact of treatment.

I believe it has reduced their fears through the last (almost) five years - I've always maintained that "some people with cancer live a short time, and other people live a really long time and I'm going to do everything I can to be one of the ones who's here for a very long time....". They do pick up on my 'scanxiety' each 3 months, between the scan and when I pick up the report - some have been more 'freakout' worthy than others of course!

I do think my daughters will be very compassionate, empathic adults - considerate and respectful members of society. They also value living in the 'here and now' - we're very spontaneous with travel (local, interstate and international!) plans; last minute picnics, bbq's at the beach or lake; creative pursuits and spending time with the people we love.

I guess 'cancer' has taken the (single) parenting experience and revved it up a few notches - it's by no means life at warp speed.......just a little less inhibited and I'm squeezing out the best bits so that life's just a bit more fun......while it lasts - however long that may be.

All the best to you - go hard, and trust your instincts on this - 'pro-active' is 'pro-life' YOUR LIFE! Get all the opinions you need - 2nd and 3rds until you're happy. Read lots, learn fast, ask too many questions.

xxxGGC

Report post

please ask your doctor about PARP-1 inhibitor (BSI-201) or mTor inhibitor. Triple negatibe breast cancer Now is treatable or cureable with BSI-201. Do not lose your heart.
God bless all of us.
Jane

Report post

I too am triple negative and my cancer spread during the first line ATC treatment to my liver, C7 verterbrae and my surrounding chest lymph nodes. My treatment then went to Ixempra and Xeloda which took care of the two spots in my liver, the C7 verterbrae and all but one of my chest lymph nodes before the treatment became to toxic on my body and the side effects too harsh to continue that treatment. I am now on Gemzar/Carbo/Avastin and trying to get the Parp BSI201. I dont know anything about IPT treatment or low dose chemo but I have researched using Metformin and if I cant get the Parp I am seriously thinking about trying it, with or without my doctors approval. I mean at my stage in the game I dont know what it could hurt but that is my opinion. I too have small children ages 16, 11, and 6. I sit them down and tell them the truth, I sugar coat it as much as I can but I let them know what is going on. It is hard on them and each deal with it differently but I feel they need to know that my time with them could be limited and I am trying to prepare them the best I know how. Best of Luck to you.

Report post

Thank you so much for all the information. I am able to take part in the gemzr/carboplatin with parp bs1201 but considering everything. I have had a hard time with lasting effects of taxol and just worry so much about more. My oncologist opinion of the metronomic chemo is that it may not be strong enough. My skin mets have grown 10 fold in only three weeks. I need to start something sooner than later. Have a second opinion set up at UCSF next week. My chidren are my life ages 9 and 6. I have not disscussed what is now going on but need to soon. Again thank you for your thoughful words. x, Holly

Report post

Dear Goove,

I'm sorry to hear about your diagnosis. I am an employee of Memorial Sloan-Kettering Cancer Center and wanted to share some resources that may be helpful as you gather information about treatment options and talking with your children about your recurrence.

I would encourage you and anyone interested in obtaining reliable information about herbs, botanicals, supplements, and alternative regimens to consider taking a look at the "About Herbs" section of Memorial Sloan-Kettering's web site. It offers evidence-based information about herbs, botanicals, supplements and other natural products, including purported uses, warnings, interactions, study results, potential benefits and side effects, etc. The information in the database is free and maintained by a pharmacist and botanicals expert on staff at Sloan-Kettering The link is www.mskcc.org/aboutherbs.

I took the liberty of looking up IPT and wanted to share the search results: http://www.mskcc.org/mskcc/html/69265.cfm . According to the database, Insulin Potentiation Therapy is a questionable cancer therapy that is not effective in treating cancer.

In addition, you might be interested in reading the following pages from the National Cancer Institute and the American Cancer Society, which offer advice on how to talk to your children about your diagnosis and how to provide security and stability for them during this difficult time.

http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamil yMemberHasCancer/index <http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFami lyMemberHasCancer/index>

http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Dealing_With_Diagnosis.a sp <http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Dealing_With_Diagnosis. asp>

http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Dealing_With_Treatment.a sp <http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Dealing_With_Treatment. asp>

http://www.cancer.gov/cancertopics/when-someone-you-love-is-treated/page6 <http://www.cancer.gov/cancertopics/when-someone-you-love-is-treated/page6>

I hope this information is useful and I wish you the best of luck as you explore your options and move forward with your treatment. -Esther

Report post

Crap. I'm so so sorry about your news.

As another Stage IV, 3x- gal, I'm also looking for options and answers--right now, please!

The very latest PARP information I know of suggests that it's a much better option for ovarian cancer than 3x- breast cancer (knowing your BRCA status could be a factor here, though).

I am currently looking at the blueberry, turmeric, and papaya leaf information/studies to see about enhancing the endless chemotherapy with dietary changes (and would welcome feedback). I know that eating well does no harm, even if antioxidant supplements are contraindicated for chemo.

There is absolutely no easy way to tell your kids. It doesn't get any easier if you put it off.

Love and light,

Treea

Report post

Goove,

I'm new mets diagnosis (one year after chemo) mets to the lungs. I have a 12 and 9 year old. We told them it was like last time and that I would go through chemo and the cancer would go away. I just think telling them I might be on chemo for the rest of my life is too overwhelming for that age. Mine took it very well. My daugther is the one with the most anxiety about it and that is mostly because she is afraid she will get it one day. But I just reassure her that prevention will be 10 fold when she is in her twenties and hopefully there will even be a cure.

I am trying to get into PARPi DSI-201. I would definitely look into that. My onc. thinks it will be available within a year to all of us. I also believe in diet diet diet! Change your diet!! No sugar (not even fruit), no grains, no processed foods. Only organic veggies, and lots of them, juicing, nuts and small amounts of organic meat and fish. I feel great and continue to train for my half marathon (with 8 tumors on my lungs). I also do NRT (nutritional response testing). It's kind of whacky but what do I have to lose?

I say go for the big guns with chemo to start and radically change the way you eat and take it from there. One day at a time with lots of deep breaths!

Blessings!
Susan

Report post

Susan is Right....

It all about what you put in your body. It is hard to change it but you must. Check into PH balancing your bocy to 7.5 alkaline, eat more 80% alkalibe foods (mostly veggies, fruitm almonds). Absolutly No Sugar or cut it TN stage IV with lung and bone mets too. Feeling good. Tied Avastin/Abraxxane, Xeloda/Tomotherapy, now Gemzr/Carbo waiting for Parp BSI-201.

Got a bad headache with the G/C. Anyone experience that on the regime?

Hope, Hugs and Happiness

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Advertisement

Advertisement

Discussion topics

Community leaders