Triple Negative Stage IV
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Nicole, it's not yet approved in Canada. My MO and I are watching and waiting impatiently - we've talked about so that's why I did my research on it. Rumor has it that it might be approved by end of the year.
as I understand it, it's taken on its own.
We have a thread on it here https://community.breastcancer.org/forum/72/topics...
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HI all Well I am here...just receptor flipped and now TNBC! Undergoing Rads to fractured C7 and to my T3 which I will finish up on Tuesday Aug 24th. This Friday I am having my 2nd Y90 to 3 liver tumors praying for no side effects this time. Then I will be going back on a chemo I did well on back in Oct-Dec Eribulin/Halaven hoping it works again....I only went off it bc of my last Y90 and side effects that lasted 4-5 months I was on no treatments..at that time I was still ER+ HER2- So I should be starting the Halaven in in Sept 6th or 7th... Just wanted to join you all here for info and friendship.
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Kar can you link me to the citrus pectin you get? Also do you take on an empty stomach?
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Nicole - Here is the link. Econugenics Pectasol Powder
Unfortunately, it's expensive. Yes, I take it on an empty stomach and away from other pills if possible. The website states to take apart from food (30 minutes before or 1.5 hours after) to maximize absorption. I heard the lime absorbs better in cold water. I have only tried the unflavored and I sip it mixed in my hot tea.
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Hello everyone, I just updated the chemo / treatments for mTNBC list with the withdrawal of atezolizumab.
Here's the direct link to that post. Any additions, deletions or if anyone has great supportive literature in support of a specific treatment line, pls let me know so we can make it a robust document.
https://community.breastcancer.org/forum/8/topics/...
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Recognized and evidence based treatment backbones for mTNBC are all listed in this post https://community.breastcancer.org/forum/8/topics/...
In this post I will compile the specific adjunct for mTNBC, which may have benefit on top of traditional chemo/immunotherapy backbone. Please discuss with your team, esp your MO and pharmacist before starting.
Any additions, please submit with link to some peer reviewed material or data from a reputable, recognized source.
STATIN
https://www.sciencedaily.com/releases/2021/08/2108...-prescription only, dosage varies on specific statin
CITRUS PECTIN https://cancerres.aacrjournals.org/content/80/16_S...
-board member KarPC '"I have read that only Econugenics Pectasol Powder works and the dosage is 15grams a day - 3 scoops. It should be taken away from food and supplements"
SULFUROPHANE https://cancerpreventionresearch.aacrjournals.org/...
-board member KarPC "My integrative doctor recommended I take Sulforaphane from Avmacol.com. He suggested I take 2 tablets twice a day. There are other brands that would be okay - I tend to get gassy with some other brands"
DESLORATADINE (anithistamine) https://www.tandfonline.com/doi/full/10.1080/02841...
-OTC in Canada; status varies in other regions.. According to the study linked above ideal dosage is not known. "our findings are based on the use of antihistamines to treat allergies, and it remains to be seen what a therapeutic dose of desloratadine as a drug for the treatment of breast cancer may be, though we suspect that it could be higher, as risk appears to decrease with an increasing cumulative dose."
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Moth - thanks so much for these. I will look them over and see if I can think ofanything to add. I am still pouty about the withdrawal of atezolizumab. That was going to be my next line of treatment. I am always hoping for more treatment options ….NOT treatment withdrawals.
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Hi all,
still not brave enough to post on the mTNBC NED thread but I also like to keep an update going as I searched people in the beginning to see their progress.
So I was diagnosed July 2020 reoccurrence to skin on right breast and lymph node on left side. I have been in tecentriq and abraxane since then. My first scan showed minimal disease (they think this was scarring in reflection) so we opted for a mastectomy and radiation to the neck. Prior to rads I saw my professor whose words were “we don't know what to do with you" I freaked as words mean very different things to patients!! She said you've had a complete pathological response so I want to take you off treatment after radiotherapy to the neck.
My head fell off and I went on super question mode - why, wouldn't this kill me, if I had some sort of hormonal or estrogen type we could be more casual etc.
she smiled and said people are individual many women of other types are in a worse position. She for the first time ever used another woman's example who had a course of abraxane then was NED for five years she said I'd had more treatment than this so why poison me. We agreed to take have a PET scan (to pick up an early cells anywhere hopefully), have radiation then have two more rounds of immuno and chemo. Obviously if the slippery sucker starts rearing it's ugly head I'll be straight back on treatment. I have three monthly scans and yearly pets anyway. I also had a three month treatment break for my op and the biopsies they did of the breast, muscle and tissue in April came back as a complete clinical response.My PET was no evidence of metastatic disease and I've had my weeks rads. Just finished my last cycle of chemo. I'm a little shell shocked but no naive enough to not feel caution this isn't my first rodeo!!
I was vegan, gluten free, sugar free, no alcohol, low carb for the first six months but I found treatment made me lose a lot of weight my prof threatened to pull my treatment as I list 42lbs in three months (not uncommon). I now have organic animal products (minimal), the occasional treat, wholemeal bread, rice and wholemeal pasta still no alcohol and I keep my weight down as these are the top two causes of breast cancer especially TN. rads and going back on treatment caused another 14lb loss so I had more complex carbs and proteins.
I have used graviola, elderberry, berberine, olive leaf, turmeric, wheatgrass, noni fruit, sulforaphane (from broccoli sprouts), ICP-10 gold, time mushroom complex 8, magnesium citrate, selenium, vegan iron and Chinese skullcap. Please note I didn’t take them all at once!!! I researched anything anti inflammatory and overloaded myself please check with your oncologist I did! As I stopped turmeric and fish oil due to reading a study stating the chemo would create liver issues. In prep for my op in April I came off all supliments aside from daily Periactin and my thyroid tablets.
I added back the baby asprin but plan on taking time turmeric, wheatgrass, sulforaphane, berberine, fish oil and mushroom supplement. I’m also trying to get mistletoe therapy but it’s hard atm as it’s only in Scotland who are still in more of a lockdown.I made a tincture for my skin of broccoli sprout oil, almond oil, coconut oil, sacred frankincense, rosemary, myrrh, lavender, geranium, turmeric, black pepper, cinnamon and chamomile. I basically went for anything anti inflammatory and would use it on my chest, neck and soles of feet… please consult your oncologist before following anything I have done my oncologist was ok with it but each person is different.
I meditate and listen to hypnosis at night and during treatments to encourage any cells to disappear. I also pray daily (not for everyone I was an atheist until this diagnosis). I drink two litres of water a day and have at least two green teas (I drink tea and coffee too) I walk daily with my dog and rest when needed.
I've booked a six night trip to Paris as i want to make hay whilst the sun is shining!! I'll try to keep updating when I have scans I totally forgot this time for a month sorry!I hope this helps someone I really do, it’s a long one but I remember at diagnosis looking at peoples posts and wanting to know everything so thought I’d put it all down … I'm gutted about the withdrawal of the treatment in the US as I know a few women still on it and depending on it (mostly in the U.K. so at the current time are still fine) as has already been said there are so few options one being removed is sad 😞
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Lulabelle ~ thanks for sharing your inspiring story and detailing your treatment practices. I do many alternative healing methods along with my conventional treatment. I hope one day I will get the formula right and see some success! Wonderful to hear that you have a Paris tripped planned. You deserve it - enjoy! ~Kar
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Moth, I think brands and dosage suggestions would be helpful as a resource for us. Also, therapeutic doses for cancer are not always the same as what the label suggests. We have so few treatment options for TNBC, so I think it's important for us to consider including alternative options. As far as the Modified Citrus Pectin, I have read that only Econugenics Pectasol Powder works and the dosage is 15grams a day - 3 scoops. It should be taken away from food and supplements. My integrative doctor recommended I take Sulforaphane from Avmacol.com. He suggested I take 2 tablets twice a day. There are other brands that would be okay - I tend to get gassy with some other brands. I take 10mg of Loratadine a day which was suggested to me from my integrative doctor. I started on 40mg of the statin (prescribed for cancer) and then moved up to 80mg when I had progression. I tolerate it well and my liver markers remain low. ~Kar
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Moth...just wondering what your thoughts are on the citrus pectin?? I have not been able to find anything saying it happens to interfere with my chemo Halaven...but then again you seem to find stuff I cannot.....have you any thoughts on this supplement and taking it with chemos?
Kar I think I am going to ask about the statin....what one do you take and how many milligrams?
Just FYI about lordadine> Claritan...I have taken Claritan D for 10 years...and got Stage 4 breast cancer...so for me...I would say that didn't prevent anything.
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Nicole, MSK has a handout on MCP https://www.mskcc.org/pdf/cancer-care/patient-educ...
re the desloratadine/loratadine: I too have been taking desloratadine for years for 4-6 mos out of the year for ages now. I think it's impossible to say it didn't do anything though...it might have delayed the cancer for all I know or maybe I'd have been de novo instead of stage 1A in 2017. And as you were hormone+ initially it wouldn't have had the effect. Also "postmenopausal women, both desloratadine and loratadine users had a pronouncedly improved survival, however, for premenopausal women, the results were not statistically significant" - I was premenopausal when diagnosed in 2017. Moot point for me as I'm on it daily now because it's part of the immunotherapy protocol.
for the statin, my MO is willing to give me atorvastatin 10mg. I'm still deciding whether to do it or not.
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Moth so that says you should not take MCP if you take a statin.... KAR....did you know that??
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Just sharing some good news - my latest scans are considered stable so I'm staying on atezolizumab + abraxane. This is 19 months from metastatic dx on 1st line of treatment.
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SO happy for you MOTH!!! WHOOO HOOOO
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moth - wonderful news!!!! Yay!
Nicole - I do take the stain thru the coc protocol so shoot - i don’t know what to do now. I do not take them near each other.
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Nicole - I don’t take it for high cholesterol though - I take it for cancer.
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moth: great news for stable on first line of treatment. Yay!
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I've been on Piqray for 3 months and my 3 month scans today were good. Everything is stable and 2 of my small lung mets got smaller. My Guardant360 report showed I had the PIK3CA mutation at the same time my tumor biopsy had me switching to tnbc. I had SBRT to the tumor I had biopsied because it was the only one not responding to treatment. My doctor and I think that I probably still have some er receptor in some of my other tumors. But we don't know. Piqray has been approved for ER positive but not TNBC so this was a risky treatment for me to start. But it is keeping me stable!
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Kar so happy for you especially since I heard that Piqray is like the HARDEST drug ever....
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Thanks Nicole. It's been such an easy drug for me!
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Kar...did you decide what to do about it saying you cannot take the statin with MCP???
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NIcole - this is a tricky one! The MSKCC link about modified citrus pectin says "do not take if you are taking lovastatin for high cholesterol: Pectin may inhibit the action of lovastatin and may increase LDL cholesterol." Now I wonder if it matters if my cholesterol is low/normal. I am not taking lovastatin to reduce my cholesterol but rather for cancer. For now, I decided to take both. I will get my cholesterol tested soon to make sure nothing funky is going on.
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Thanks Kar... I got the statin from my MO I think I am just gonna do that bc I don't want one to cancel out the other...its so hard to know...
In the mean time I have been very very sick from my chemo and even debating going off treatment all togetther...but of course now that I am feeling better I am re thinking that..mainly bc I am hearing better things about 1. Abraxane... 2. Trodlevy and 3. about possibly dose reducing the Halaven...so I need a big conversation with my MO....
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Nicole - I hope you continue to feel better and your MO helps you tweak your treatment plan. Hugs ~ Kar
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Does anyone know what percent PD-L1 positive you need to be to get immunotherapy?
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DutchIris,
The decision to use pembrolizumab (Keytruda) is different for each cancer. You can read about the criteria here:
https://www.keytrudahcp.com/biomarker-testing/pd-l...
So far there doesn't seem to be a published cut point but it appears it will be a combined positive score (CPS) of between 1-10.
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dutchiris, so the only immono approved now is pembro/keytruda (since atezo got withdrawn) & for mTNBC they need 10% or more "Combined Positive Score"
This scoring method evaluates the number of PD-L1–staining cells (tumor cells, lymphocytes, macrophages) relative to all viable tumor cells.
CPS Calculation
CPS = # of PD-L1–positive cells / Total # of PD-L1–positive + PD-L1–negative tumor cells x 100
https://www.keytrudahcp.com/biomarker-testing/pd-l...
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Moth wanna hear something weird..my MO mentioned Abraxane + an immo for me and said since my frist PDL1 was positive it would probably get approved....even though the liver one came up negative..I wonder what immo she would combine it with??
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