TRIPLE POSITIVE GROUP

Norsken, please keep us posted on your Nerlynx experiences.

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.

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!

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.

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.

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

HapB, just hang in there, cold showers suck, I remember visiting my parents in 90-ies with my eldest being small, no warm water for the whole summer, the municipality just turned it off, they were saving money, and it took a while until the water heaters emerged in the stores. I just warmed tons of water to full the tub for my daughter’s baths. Saturday is almost here.

KimCee, Taxol is manageble for most of us, the effect is cumulative though and the last three weeks I have been sleeping through the days 3-4. It is just as they describe the fatigue, you sleep through the night, you wake up and in an hour you feel like you did not sleep at all. Today I crushed right after 11AM, after my counsellor called and said I missed an appointment, and I slept until 3PM despite some road or construction work going on outside our appartment building. They were tearing the pavement or at least how it sounded, but I still slept. It was the same yesterday, I slept in the middle of the day, but I atributed it to my bad sleep that night due to cortisone. I believe I will sleep through the tomorrow as well. Are you sure you want to work through all chemo? I am working 25% from home but some days like this I cannot do much and then I work longer on the good days.

My hair starts growing back and I only have one infusion left but I still do not know what to do with my treatment. I had this phone call with our national bc committee chairman yesterday, he is the highest in the ranking in the country, my oncologist knows him well and wanted him to talk to me. He thinks I can take EC even though the standard treatment for me is weekly Taxol, but LVI and high Ki67 can be the reason to add an anthracycline. He said not to worry about the heart damage and neutropenic fever, not after three infusions and EC is not exactly AC but there is a slight risk of developing leukemia. And he said that I was the most difficult kind, the one who has too much information but still not being able to process it or understand in the right way because first I was a patient, emotionally affected and scared, and second I am still not a doctor and cannot understand how it works. He was very nice actually, I got another week to think and he will call me next Tuesday. And they will order a bone scan because I was complaining about my back, I am so scared I turned to pills yesterday. I wish to be over with chemo but I feel like I need to say to myself that I have done everything I could. It would mean chemo for additional nine weeks and the hair that has grown, this little fluff will be gone again.

Have all you done scans? They did no scans on me and my back started hurting two weeks after my diagnosis. Everybody kept telling me it was muscular, BS, GP, MO, two different PTs, but it still hurts even if I am doing exercises on foam roller and going to PT every week. X-ray was clean in August, but it has not the same sensitivity as a bone scan. My cancer rehab PT said it was due to my anxiety but I have been on the antidepressive for over a month now. Anyone who had similar problem and it turned out nothing? I think I already asked this. All this stuff is just so lifewrecking.

Have you noticed that it has been a while since SpecialK posted? She must be taking a time-out. Cherry

I Survived the fill...lol. It was not bad at all. I did not feel the butterfly needle stick at all since I am still numb, she filled 90 cc in each side. Felt fine. Probably because it has been five weeks since surgery and I'm healed up pretty well.

I agree with you all regarding chemo being cumulative - I wouldn't work if I didn't have to, but I am a one girl show here and need to pay my bills and have my health insurance. So back to work in three weeks for me. Cherry, tough decision on the EC for sure.

TreysRib, not sure if you are asking me about the port? But if so, it was placed in the jugular because the surgeon couldn't get a clear view of the superior vena cava so in the neck it is - yuck.

Vicky - oh no....can't believe your nose is still dripping The outside of your poor nose has to be sore...I pray it stops soon.

LOL Vicky....nudist camp for you??? I hope my boobs turn out as good as yours

HapB  A friend of mine who also has cancer (not BC) could not afford her meds either, she contacted the drug company and they worked it out so that she could get it at a reduced price.  The price went from a very high price down to a reasonable copay.  She was on Medicare as well.

ugh. A blood clot may be in my arm. I will have an ultrasound tomorrow. My infection is back. More antibiotics. This triple positive stuff is wearing me down.

Suburbs, so sorry to hear that, hope it will resolve quickly, I agree with you, it is always something.

Hapb, so sorry to hear about your troubles! You have really been through so much. Hope your MO finds a good solution to all your SEs. Glad to hear your power is back on.

Suburbs, sorry to hear about your infection. Hang in there and feel better soon.

kimcee - glad to hear your fill went well. You're a tough cookie.

Vicky enjoy your mini vacation, you so deserve it

As for me, I'm traveling every week and my job is wearing me down. Will be working 15+ hours today and again tomorrow. Worried about what this is doing to me on the inside. I meditate often and that helps. Staying positive and focused on retiring in 21 weeks!

Praying for you all daily....stay strong my cancer warrior sisters!

I would go to the Arimidex Forum and ask.

I did TEVA as the second generic. The hot flashes were seldom but brutal when they hit.

I go to a great place too with competent people. And sometimes, I say "when you took the generic, what side effects did you have?" Considering no one on my Oncology Team has had cancer or been a primary caregiver to an immediate family member, they shut up and give me what I want. It is an assertive side of me I don't like using but I will use it when necessary,

Vicky

Hi all - have been on vacation and not logging in, but am now back.

hap - there are no studies on side effects of aromatase inhibitors based upon generic makeup because its a moving target. You could take one generic formulation and people will have a myriad of side effects, or none at all. Generic manufacturers come and go. The side effects are often based on the inactive ingredients, and these differ from manufacturer to manufacturer. This is one reason changing to a different maker can help, even though the active ingredient is the same. I think that is what your oncologist meant - each generic has the same active ingredient - they are all the same in that regard. There are three aromatase inhibitor drugs - 1) Arimidex, with the active ingredient anastrazole - the generic would say anastrazole, Arimidex is the original brand name of the drug, 2) Femara, with the active ingredient letrozole - the generic would say letrozole, Femara is the original brand name of the drug, and 3) Aromasin, with the active ingredient exemestane - the generic would say exemestane, Aromasin is the original brand name of the drug. Arimidex and Femara are most similar, Aromasin contains a steroidal component. All three of these drugs control the enzyme aromatase thus disabling its ability to convert androgens secreted by the adrenal gland into estrogen.