TRIPLE POSITIVE GROUP

coachvicky

HopeLisa

There is a forum on cold caps. I encourage you to go to it.

It was worth it to me to do the gel caps. I deeply admire women who can go bald and regrow. I do not have that strength.

There is also a forum on hair hair hair that will be helpful.

Here is what I used:

Amixture of:

1 cup coconut oil

1 cup jojoba oil

1/2 cup castor oil.

Apply all over the head and thru the hair at night.

Oil source: Amazon: Jojoba Oil Golden Organic 100% Pure 16 Oz by Dr Adorable

Shampoo: Redken Cerafill Retaliate Shampoo For Advanced Thinning Hair 33.8 oz.

Whatever you decide, you are going to get thru this. And you will be stronger on the other side.

Vicky

coachvicky

Peoy

I had the standard treatment of 6 rounds of Taxotere, Carboplatin, and Herceptin. Then I had 12 rounds of just Herceptin. Each rounds was every 21 days.

Vicky

coachvicky

Hope Lisa

My numbers were 90 and higher.

Write your questions down and take them to your MD appointments. It will also work if someone goes with you and writes the answers.

Yes, it is so confusing in the beginning.

Before long you will be like Cherry ... Supporting others and giving information!

You will make the best decision you can and move forward. It will be OK.

Vicky

Cherry-sw

Kattis, wonderful news and what an incourraging doctor, I would like to meet him too, I have not been to this clinic yet.

Coachvicky, I would still like to reserve a right to rant and vent here, you all are the only people I feel I can open to. My treatment has really worn me down, it is like I only have 1,5 good day now and then it is Monday again. If they would try to convince me not to take EC it will be so easy to do, I just want it to be over at least for chemo part, I do not know how to endure three dd EC, it is taking its toll on me. And this baldness, I did not know hair was such a big deal. Cooked soup and stew for tomorrow, will be off for genetic testing and 11th Taxol.

Cherry

coachvicky

Cherry

Rant on! It is hard and you are going to get thru this.

Hair is a big thing. But I bet you are not shaving your legs or underarms, yes? That is a GREAT thing (at least to me)

I remember many of your first posts. You may not see it but you have made great progress.

Hang in there. Soon this will be in your rear view mirror.

Vicky

Cherry-sw

coachvicky, I turned the internet upside down for information and red a lot here as well. I bet I sound different, one will be changed after some time, not because she wants to but because she has to. I wish I had never known anything about it but here I am. I had a breakdown about it to my mom today, asking why me and at this age, I feel so sorry that she has to g through it, and the kids too.

Cherry

Cherry-sw

Thank you HapB

PoseyGirl

So re: the Mexican Soup, Cherry...its so tasty! I don't have a lot of specifics re: exact measurements, but there's a lot of leeway:

- take chicken thighs deboned and deskinned and chop up or dice.

- sprinkle the following spices on the chicken (to your liking): paprika, chili powder, cumin, cayenne pepper, oregano, Tex mex, pepper salt, onion salt, garlic salt

- sautée the chicken and remove

- cut up 2 onions, 1 green pepper (dice) and sautée in the pot. Chop up garlic and throw in as well.

- add in a box (4 cups) of chicken broth. add in 4 cups of water.

- add a can of kernel corn, a can of black beans. Add in the chicken and stir. add in zest of one lime and juice of the one lime.

- add a few dashes of hot sauce (to your taste) and add in a 1/4 cup of cornmeal mixed with a bit of water. Add some red wine vinegar. I threw in 2-3 teaspoons

Voila...Mexican Soup. It's really nice if you cut up avocado and put that in and if you put a dollop of sour cream on top. It's sooo tasty! Those are fried quinoa patties beside the bowl...also very good

PoseyGirl

this guy is originally Canadian but now works in the States. Doing very promising work in the area of immunology:

http://windsorstar.com/news/local-news/windsor-native-makes-a-cancer-research-breakthrough

PauletteK

Posey - great article, wish we have more good news in the future so we don’t have to do chemo.

I’m not Triple Positive but I lurk here all the time because I found this thread has so much information and love to learn from all of you.

Cherry-sw

Thank you for the recipe, PoseyGirl, sounds delicious and I bet the kids will like it too. I wonder whether cornmeal and polenta is the same thing? Will try it this week. I will use my veggie broth in it. What ingridients do you have in you quinoa patties?

More food pictures to the people. When I was on parental leave with my youngest my husband added some new tv channels, I ended up watching BBC food all the time. I remember a program where an elderly English lady cooked in her country home. Once she went to the woods to pick blackberries for a pie and while having a conversation with a camera man who ask her something about why one should try to overdo it when it comes to food she replied, well, it is food, it is the most important thing in the world. It just stuck in my head.

Cherry

coachvicky

That soup looks GREAT!

VIcky

Cherry-sw

I agree the soup looks great, rustique, an autumn meal. And those sturdy pumpkins in the background, never seen this sort around here. At least if they are painted?

Dancefan

Hi Coachvicky

Thanks for the hair recommendations will look them up on Amazon. I too feel I would really struggle with no hair so I will give the cold caps and treatments a try - the treatments sound very gentle. I am sure the cold caps must be gruelling so I'll check out the cold caps topic for info.

Thanks Lisa

Kattis894

HapB,

I am on Letrozol (Femara) for 10 years...:( another 9 years to go..:)

The famous American cooking show must be with Julia Child perhaps, a wonderful groundbreaking woman...well portrayed by Meryl Streep in the movie Julie and Julia a must for every cook out there...and a feel good movie as well...perfect during treatment time. I also enjoyed the tv-series Grace & Frankie with Jane Fonda and Lily Tomi while on chemo..it made me forget the hole thing for awhile...

PoseyGirl

Hi Cherry,

Those pumpkins aren't real...just picked up at some decor store!

The quinoa patties are easy:

- mix quinoa with beaten eggs, bread crumbs (so if you do one cup of quinoa, use one egg)

- dice any veggies you want - zucchini, carrot, onion, garlic...

- throw in some shredded Parmesan cheese

- spice how you wish!

Mix all together, make into patties and fry!

Kattis,I have a boatload of Netflix shows to suggest that I watched through treatment (and beyond). If anybody wants my list, I can offer it up!

Cherry-sw

Kattis, thank you, I did not see that one but I am up for anything starring Meryl Streep. A friend recommended Schitt’s Creek with Eugene Levy and Catherine O’Hara, a Canadian show, about a wealthy family that IRS caught on major tax fraud and they ended up in cheap motel. Itis light and funny, both pre- and unpredictable, I liked it. I also watched Netflix The Crown about The Queen since the time she got married, good production and I liked this one too. I start watching Mr. Robot, so far not so much but I will give it a try. My life is boring otherwise, last week I mostly stayed indoors because I could not see anyone, I have to get out this week.

Cherry

Norsken82070

Thank you for the advice!

Cherry-sw

Norsken, please keep us posted on your Nerlynx experiences.

Suburbs

Good question Cherry-sw. I have been following the nerlynx thread in the HER2+ section but it is not very active. I hope more information starts surfacing on the subject.

Cherry-sw

Suburbs,

I have googled about neratinib in Sweden and found an interview with the our breast cancer commettee chairman, translated by google:

In the adjuvant treatment of Her2 positive breast cancer, he recently raised a study with the new kinase inhibitor neratinib. Patients who have been relapsed after one year of standard treatment were taken to the new drug or placebo.

After two years of follow-up, there was a clear reduced risk of relapse among patients receiving neratinib, at the price of more gastrointestinal side effects.

"This was a promising result, but the follow-up was very early and the question is whether the outcome is in the case of longer follow-ups and if it means a survival gain,"

Another article from Swedish journal Oncologi says the following, translated by Google:

Here is the link but it is in Swedish, http://www.onkologiisverige.se/wp-content/uploads/...

A real challenge

The benefit of trastuzumab by adjuvant treatment may be due to lymph node status and tumor size, according to professor von Minckwitz. When the risk of relapse getting less also reduces the benefit treatment. It must be related to side effects and may require discussion with the patient. It has been difficult to show that further treatment with HER2 blockade after one year of trastuzumab may improve results. But at ASCO 2015 this year was presented a study with the irreversible HER2 inhibitor neratinib as shown to continue treatment after one year adjuvant treatment with trastuzumab gives a better effect. The problem with that study was according to Gunter von Minckwitz to the sponsor changed the layout three times. An external independent statistical analysis nevertheless came until the results are correct.

- The study showed that neratinib after standard treatment with trastuzumab further could improve disease-free survival. DFS for neratinib was 93.9 percent and for placebo 91.6 percent (p = 0.009) after two years, said Gunter von Minckwitz. The problem with neratinib is its toxicity. 95.9 percent of patients experienced some form of diarrhea, compared to 35.4 percent in the placebo group. "It is a challenge for both the doctor and for the patient and yet it is for early use of neratinib in routine treatment, said Gunter von Minckwitz. What other adjuvant study data have we look forward to, he wondered then. The APHINITY study is studying pertuzumab in combination with trastuzumab and chemotherapy adjuvant can increase it disease-free survival. The study is eventual and under the other quarter 2016, the results should be presented.

Both articles are from 2015.

Meowmmy65

HapB - I happened to see my oncologist today to discuss my treatment plan. (I'm hoping I will finally have my lumpectomy Thursday, after having to postpone 3 times! First, a broken radiography machine, and the two times because I had a serious case of cellulitis, completely unrelated to the cancer.) He said he has only had a few patients have to "pause" their herceptin treatments due to a drop in heart function, and after a few weeks, function improved, and they resumed herceptin treatments without any problem.

Crossing my fingers, and hoping this is my week! I'm ready to move forward. Expecting 6 chemo sessions (taxotere & carboplatin), the year of herceptin, and tamoxifen.

Trick or Treat? Nasty trick is what all this is! But, I refuse to complain. I'm very lucky.

ElaineTherese

HapB,

Sorry to hear about the drop in your heart rate function. Some women who've posted on this board (e.g. Blownaway) had to stop their Herceptin due to heart problems. I'm on generic Aromasin; it's OK. After 2.5 years, I have full-blown osteoporosis and have to take Fosamax.

Good luck with your power problems!

Meowmmy65

I didn't mean you - HapB - complain all you want!

ElaineTherese

HapB

My generic Aromasin costs about $10.00 for a 90-day supply. I'm not sure why it's so much cheaper than what you've been quoted. It was cheap when my insurer was Blue Cross/Blue Shield of Oklahoma, and it's still cheap now that I'm on Cigna.

ElaineTherese

HapB,

No, I'm only 50, and get my insurance through my employer.

Taco1946

HapB - Decrease in heart function is ANOTHER SE of Herceptin. I had a baseline echocardiogram and then one every 3 months (my first one was moved up a few weeks because I was having shortness of breathe). My Medicare D plan is with AARP (United Health Care) and I pay about $30.00 for a 90 day supply of "Teva" brand generic at my local Walgreens. I think the first 90 days when I got "Accord", it was a little less but not much. I know the non-generic is more expensive but people are getting it for about $1.00 a day directly from the manufacturer. Someone should be able to give you a website. I've done OK with the Teva. Had morning headaches with Accord and am glad I switched. Now I think my aches and pains are just "71." There is a thread for AI's. I don't know if I have seen you there. Finally had my first bone density test and all is well there. I'm so sorry you are having so many problems. Sadly, life isn't fair.

Cherry-sw

HapB, I have no answers to any of your questions but I am sorry that you have to deal with all those, and any of us recognizes the feeling when it gets to the point that it is just too much. The drug expense sounds very high and I being without electricity must be awful. When are they saying it will get fixed? I hope it will be soon, just hang in and enjoy the weather. I have been told that if Herceptin can cause any change in heart function it is reversable and after a break one can resume it. Lets hope for the better. I have not been a happy camper since my disgnosis, just let it out Cherry

KimCee

HapB I hear you. On all of it. Praying for all my breast buddies always. The cost of the generic does sound high. Did you try Walmart pharmacy? I did once after CVS price was crazy and the same script cost me 4 bucks...I couldn't believe it.

I also breezed through treatment last time around. I had my first Taxol and Herceptin last week and have been sleeping til 10:30am since, nose already running...how the heck am I going to go back to work in two weeks...eeek.

This morning is my first TE fill.and I am most nervous about it. What a wimp...after all I have been through this should not worry me but it is. Hate this fake, tight, not normal feeling.....darned foobs

coachvicky

I hear you KimCee!

My nose has run with something since 22 August when I started chemo. It still does and finished Herceptin in August.

Best wishes on your fill. I just laid there and pretended I was a flat chested teenager getting her wish for bigger boobs! My PS did a great job using a numbing cream, then a little shot, and then the fill.

Vicky