Calling all TNs

Sorry Fracking for the confusion but her real story is complex and long.

My dear wife doesn't use the computer much with the exception of Amazon and eBay.

Her case is very complex and it all started in November of 2012. She was diagnosed right off with 3 different breast cancers at once. In her right breast was a large ER/PR+, 100% estrogen, Grade 1 tumor. Inside that was an ER/PR+ 30% estrogen grade 3 tumor. In 9 of her 19 lymph nodes removed was triple negative metaplastic breast cancer with spillover of metaplastic into surrounding tissue. Lifetime AC (maximum allowed without causing heart damage) and radiation got rid of that mess. No taxol as she was highly allergic to it and went into allergic shock and passed out in the infusion room.

Months of various estrogen blockers such as arimidex, aromasin and tamoxifen failed to stop the cancers return. A biopsy was done on a metastasis to her hip which showed it 2% ER/PR+ and the rest TNBC. I'm leaving out some other things like an operations for a huge ovarian cyst and a large benign tumor on her kidney.

She was then put on capecitabine (Xeloda) for about 18 months and that kept her extensive spinal and hip metastasis (from small to medium size) in check. Eventually, it stopped altogether and progression ensued. The Dr. said her spine lit up solid red from top to bottom.

Next, her oncologist tried eribulin (Halaven). He related that it seemed to work well on TNBC and especially when capecitabine failed. Wow, did it work! Her last two PET scans showed her clear of all cancer. She was taken off all chemo 2 ½ months ago and is scheduled for a PET scan one in two weeks.

I recently ordered her some Pimsleur French language CD's. My daughter and her boyfriend are also studying French. Her boyfriend is French Canadian but hasn't spoken it in years. Surprising my wife can read French quit well but has problems with pronunciations.

Fracking, there is a link to abbreviations under the forum jump up on the left. Welcome. I actually found it so much easier to not have to worry about my hair. I liked my wig, it was better than my real hair. No need to style it, just throw it on and go.

This doesn't seem to have been picked up much in the press, but it would be a big step forward, if it came to fruition. 10 years seems awfully long, tho

https://www.dailymail.co.uk/health/article-6906383/Women-deadliest-form-breast-cancer-saved-simple-test-scientists.html

Flynn, it sounds like they wouldn’t give the women with NUP98 AC, but taxanes. But most of us are getting taxanes (paclitexel, docetaxel) anyway. *shrug

Flynn, I agree about wanting to be able to judge effectiveness. I had my chemo prior to surgery and one positive effect was we could feel the timer shrinking. It helped me cope with the negative side effects to be able to see and feel the positive effects.

As LoveMyVizsla noted, the article seems to say that some people might be able to avoid the AC combo if it's shown that those drugs don't work on their cancer. But that leaves the taxanes, which most of us get anyway, even those not getting the AC for other reasons. So apparently they can't test (yet) for the taxanes' effectiveness? I had chemo after my tumor was removed, but only taxotere and cytoxan, so I guess there's no way to tell how effective the chemo was? Except if I have a recurrence, it didn't work, and if I don't, it did??? Maybe they could test the biopsied tissue? They didn't do that in the study reported in the article...

Well, I'm a one dose wonder with CHEMO. AC, so I did get to dance with the red devil but just once...

My tumor type is basically proven CHEMO -resistant. Because it's meta -Plastic. Docs still want me to do it, because it's all they have, and it just MIGHT help they can't PROVE it doesn't they say. Also it is the standard of care. We treat MPNC TNBC just like TNBC, until you have a MET and then we don't.

I'll never get CHEMO for a MET because I don't plan to get one of course, but if I do they'll just radiate it.

So I collected the studies and was like, ok sure, my tumor's out so we CAN'T PROVE this AC is ineffective, but here are the first 15 studies of probably 100 that draw the conclusion that NO chemo works on my tumor type, not AC not T not FEC or whatever they're using in Europe. I mean we have scientists for a reason. It's so they can collect and analyze data form hypotheses, run experiments where needed and show doctors where to go next with treatment when they may not know.

Also you know I'm technically cancer free at the moment, so I feel I'm it METS management. Prophylactic METS management so I never get a MET but still. If I get one they won't bother with CHEMO. Because they know how ineffective it is on my tumor. So why on god's green earth am I putting myself through it now? I read one study it's for the new IMMUNOTHERAPY for mPBC TNCB ( meta-Plastic) where the CHEMO actually just pissed the local chest wall post MBX plastic METS tumor off. Then 2nd dose is immuno-chemo mix, tumor shrinks and leaves. So that was just approved for STAGE Four MPBC (Meta plastic only I think - it takes advantage of the metaplastics high death or kill something something that overexpresses in mPBC and makes it so virulent). So in 5 years that will be standard first line treatment most likely for my TUMOR but not today.

Think they can eventually for newly future diagnosed people make mPlastic TNBC CHRONIC, which I guess means it won't kill you any more if you're careful. But as my DOC likes to say, you'll still be eligible for all the other cancers!

Thing is 5 years is too long. In five years my TNBC mPLASTIC story has played itself out. Half of my tumor type will be dead in 5. or maybe it's 65% . Some numbers go as low as 40%. But that's because when it comes back distally we generally die in 8 months. BUT that said, half the time it's never seen from again!

Like the rare Chernobyl Minnow, now extinct. It crawled out of a swap, into a woman's breast one day to hide. They attacked it with needles, they attacked it with tears, they came at it with ill will and admonitions, , then they danced, cried again to shrink it, attacked it with knives, and finally it was gone.

Then they toxified the place it had been and radiated it. Hoping to kill any small seeds it had laid before it left. They imagined dragons to surveill and keep it away. And giant Squid patrolled the swap now..... And it was never heard from again....

Fracking out, off to DERMO to solve a CHEMO rash before reconstruct and RADS. I will be MARATHONING game of thrones too! MNCTeach and FLYNN. We should do a GOT marathon book club sort of thing. Is it your first time through GOT or are you rewatching/ catching up for premiere? I'll be rewatching for premiere!!!

Fracking, do complimentary practices or metabolic therapies help w metaplastic? High dose C, hyperbaric Oxygen, metfomin, melatonin, hyperthermia, keto, supplements, vigorous exercise, etc? These are some proactive things you might check into.

Hi guys,

What's a Right to Try Law? Is it some law allowing people to get access to new treatments? Is it Local? State? Federal? Forum related?

I'm guessing all that stuff mention by Santa Barbarian work and I may be able to figure out modifications that will work for myself. so I'm going item by item and googling them.

1. Yes to vigorous exercise. Any indication how vigorous? And I hear weightlifting someone has been telling me to avoid bone cancer mets? So, Yes exercise √ check. Vigorous. What qualifies as vigorous? √
2. What's with the vitamin C? Just take more of it is that it? Is this a Linus Pauling thing? I could just take more and I will. The thing with actual effectiveness on that I don't care if it works or not, I like vitamin C, and it's true I haven't had enough of it lately. . I'll get a big thing of chewables. It certainly could not hurt, who doesn't love vitamin C. YES I will increase my vitamin C intake so modified. Vitamin C check √
3. I don't own a hyperbaric oxygen chamber and I'm not going to buy one so that's probably out. I'm also very claustrophobic, so I think the anxiety there would outweigh the benefit. NO, lack of chamber. But, I will take ten deep breaths 3 times a day. or as often as I think of it. deep Breathing check to improve oxygen levels and lung function √
4. Keto diet, let's see, ok I googled it. No I'm not doing anything involving heavy cream and mayonnaise, but that said, I'm a pesco - vegetarian and I will cut all sugar and most carbs out of my diet and eat more fatty fish and fish roe. And cottage cheese and herbs etc. Garlic... so I will make diet modifications for sure. What cancer wouldn't respond to that right? Yes modified I'll do low carb and try to increase fat sources like fatty fish. diet check √.
5. I do like melatonin in general, trader joes has the supplements that are chewable. I'm afraid to mess with my sleep cycles so I will take it as a supplement in the am and forget it has any effect on sleep. Yes modified, I will take a melatonin every day. Melatonin check√
6. Metformin: OK this is a drug. I am notoriously bad with drugs. This one's for insulin and weight loss. How about I just lose weight instead? I'm reading studies. Looks complicated. I don't fully understand the mPlastic cell type yet. I'm mid semester with classes offering me a break MAYBE at the end of June. I will understand mPlastic soon and someday. So this one's a IDK and we'll see. How about I just lose weight? That I will do. Weight loss check √.
7. Hyperthermia: Ok upon reading this, this suggests that carrying a cell phone in one's bra might prevent breast cancer which I was thinking might be true as I always carried mine on the non tumor breast. OK so I'll keep carrying my cell phone in my bra. And then spend time in Saunas? I'll have to look into that. And maybe I get a gym with a sauna? I will check doctor on this one first. I mean heat usually increases metabolic processes, but I guess if cancer likes it cold then cancer likes it cold. But I'm open to it. I love saunas. And I'd love a reason to need it. It's good at least to know that heat or hot weather isn't BAD for cancer. Heat it up √ Saunas and Spas √
8. Supplements: The doctor has been trying to get me to take a b -supplement. So if I take a B vitamin and melatonin and Vitamin C I should be covered right? And I'll do the colorful plate thing too. YES modified vitamins and supplement C & B and melatonin check √
9. Meditation: love meditation. I'm a background meditator so I meditate my way through transitions all day and commutes etc. Meditation and mindfulness & Slowing down to the present moment. big check √√√
10. Also, imagery. I'm going to do it! I will imagine the dragons, and the squid in my blood and my organs,working hard and fighting cancer for me. I'll imagine the destruction of any remnant's of my disease. I'll set aside meditation time and do it then. And I'll do it when I'm in the radiation chamber. Maybe I'll join a Tai Chi group and do it then as well. I know my community has an informal group that meets at the tennis courts every am. They have a leader but no formal organization or payment for example. It's drop in. I'm going to add Imagery, Cancer eradication Imagery check √
11. Positive thinking. Eradicating negativity. Standing up for what counts. Making meaningful courageous gestures that say I am alive, I make a difference, I am a worthy active participant of this thing called life. I try my best to do the right thing and then I do the right thing. I admit and correct my mistakes as best I can. I take a daily inventory of my actions and what I did well, and what may be improved upon for tomorrow. I reward myself. I am not a martyr, no stake burning for me, look elsewhere for your martyrs. I am a cancer hero. I live. I laugh all the time when and if I can. I talk about what bothers me until it no longer bothers me. No stuffing or stewing anything when you have cancer, am I right? I accept that life has changed for me but I'm still me and I still want to live this new challenging life. And I'm so grateful for the opportunity. And Wi-fi. Super grateful for wI-fi. Positive thinking and wellness and √ check.
12. I'm also handing this battle over to my higher power (who generally hands it right back to me) and so taking suggestions. Expressing gratitude first this every morning to actively increase connection with the planet. Staying on the positive side of life and feeling grateful that I get to do so. Humility, gratitude, staying open and connected and thankful for this opportunity to learn so much more about myself and others and life in general. I'm humble and grateful. Faith in something is powerful. Keep my head to the sky. √ check.
13. Drink lots of water.
14. Don't eat too late at night.
15. Get lots of sleep.
16. Stay away from all recreational drugs, alcohol, tobacco, and other carcinogens. and I do that. 100% now.
17. Have fun. Do something just for fun for you everyday FUN every day. check √

OK this was awesome thank you so much Santa Barbarina. (My niece just got into UCSB as a high school senior and she is actually down there now). See how I changed your name? Santa Barbarina. It's mysterious and has an allure. But I like Santa Barbarian too of course. My young 27 year old cousin also just graduated from UCSB 5 years ago and still lives down there. That said I've never really spent any time there, but I will be with my niece down there now we'll be down there all the time I'm guessing.

So this was a great reminder of these things that must obviously have an effect on one's overall health and also may affect cancer health/ prevent mets. etc. yay!

I'm so tired. Game of Thrones has like ZERO positive thinking. But I'm gonna watch it anyway And eat doritos. OK no doritos but I'm gonna eat some pico de gallo salsa and cottage cheese. So just like doritos. The things I do for cancer....

It has been so helpful to peruse the forums I just wish I had gotten here sooner.

I am wondering if anyone has experience or advice for deciding for or against rads. I was diagnosed at 43 following a routine mammogram in the fall--IDC, Stage IIIC, TN grade 3, Ki67 95%. The tumor was 1.4cm and near the chest wall but had spread to axillary nodes as well as 1 supraclavicular node.

I completed chemo in January, dose dense AC+T. My axillary nodes began to soften after the first treatment and no longer felt enlarged after the third. I had a double mastectomy 3 weeks after finishing chemo. I was fortunate to have a pCR, with no evidence of the primary tumor. I had ALND with 21 nodes removed and no cancer present but with scarring evident in 6 nodes suggesting treatment effect.

I am considering opting out of radiation and looking for input. I learned I have a BRCA mutation which made my surgical decision easier. I also found out I have a heterozygous ATM mutation which may place me at an increased risk of radiation sensitivity. This coupled with my concerns about damage to my heart and increased risk of lymphedema make the radiation decision much more difficult.

Am I being irrational to consider omitting radiation?

Traveler,

I was in your shoes pretty closely. I also had a pCR. That is just WONDERFUL!!

I did the rads because statistically the long term disease-free survival rate goes up about 10% with rads for those w pCR.

I was also really worried about long term damage, so I elected to get Proton Radiation. You might want to see if you can get that in your area. You will still have SEs, but the radiation can be more precisely targeted and it does not pass through the heart or lungs.

The risk of trouble with your specific genetic mutation must be calculated, and weighed against survival advantage... can you get the % of problems from your RO or MO?

I would approach it that way, and see what the numbers tell me. Good Luck!

I chose not to do radiation after my BMX. My circumstances are a little different than yours.

I was 58, an ex-smoker, did not get a PCR, but I only had a single micromet in one node. I figured I've already done enough damage to my lungs. Not sure they could have handled more from the radiation. I also did 7 rounds of Xeloda afterwards to mop up any stray cells.

I like santabarbarian's suggestion to look into proton radiation. If I had known about it at the time, I would have at least explored that option.

Only you can decide what is the best choice for you. Best wishes for continued healing.

Trish

That’s a tough one. I agree that Tylenol is virtually worthless. I would take as little ibuprofen as you can and still tolerate the pain level. As an aside, I took gabapentin for hot flashes (thank you chemo), and it was Great for sleeping at night, but I was a little fuzzy during the day.

Fracking- I don’t have experience with your particular situation. Have you shown your surgeon that link and asked his or her opinion? The only slightly relevant idea that I’ve heard is a person that I know who took antihistamines instead of gabapentin. They had some sort of calming effect after reconstruction. I haven’t looked into that at all- it’s purely anecdotal.

Dee- I had a couple dose reductions thru out treatment. I offered to space treatments out to give myself more recovery time but my MO felt the reductions were ok and wanted me to get to surgery in a reasonable time frame. I did give myself neupogen injections to support my WBC. Good luck!

Dee, I have chronic low white counts due to a pre-existing auto immune disorder. Knowing this, my MO gave me an extra week between AC treatments. Even so, she had to make a dose reduction and I had to give myself neulasta injections. Once on Taxol(no carbo), I had to switch to neupogen injections due to the timing. Normally my MO wouldn’t treat somebody if their neutrophils were under 1000, but that’s where mine are normally. So for me, she had to drop it down to 750. It took me 7 months, but I made it through.