TRIPLE POSITIVE GROUP

Creativevintage-

We just wanted to welcome you to our community here at BCO! We're sorry for the circumstances that bring you here, but we're very glad you've found us, and hope you find the support and encouragement you need, when you need it most!

You'll get lots of feedback and support here on the boards, but if you ever need assistance in any way, please don't hesitate to reach out to us. We'll be thinking of you!

The Mods

I would like to know if what I am experiencing is normal. I finished TCH mid-March. I started tamoxifan May 18. My legs feel very weak and when I lay down I want to cry the fatiguing pain just doesn't go away. Tylenol doesn't help. MO said it's post chemo but I'm wondering if it is tamoxifen. I can't do 5 more months of this let alone 5 years.

The muscle fatigue is most likely a function of low hemoglobin.  The further out you get from chemo the higher your hemoglobin should go, until it resumes a normal level.  Hemoglobin is what oxygenates your muscles - so low Hgb = tired muscles.  I would encourage you to eat protein and iron rich foods to try to increase RBC production and increased Hgb.

Thanks all. My blood levels are normal and I'm almost 4 months since the last chemo so I'm just so surprised by the nagging pain.

I met with my MO prior to chemo today. He was very concerned about the severity of the side effects and ther duration. He feels the chemo brought on a return of the it's I had as a young adult. He prescribed new meds to help with that. He also halved the herceptin and perjeta and reduced the taxotere and the carboplatin to 75% of the standard dose. He cannot palpate either tumor, just some fibrous tissue where they were located. Yippee! I put some weight back on and in all lost only 3 pounds. He has also scheduled labs in one week to see how low my white count goes with the new dose. He did recommend the ice chips when trying the taxotere and carbo and it helped so far. Because of all the premed I sleep through the whole thing. They are going to reduce the Benadryl next time because I had restless legs and it was very annoying. I will be going back tomorrow for my neulasta and extra I've fluids to conteract any dehydration. All in all iwas much happier this time. So ar they are leaving my schedule for four I fusions and will add the final two after my next echo. My initial ejection fraction was 71

I lived on sugar free jolly ranchers. They really get you saliva glands going.

MN,

The deal about TP as it was explained to me was that anything below 5mm (I was 7mm) and no nodal involvement was not necessarily treated with chemo or herceptin as it was considered over kill for such small tumors. In fact this debate even threw people like me who were well below 1cm, into a "grey area" where MOs didn't really know whether to treat with chemo /herceptin or not.

I had two different recommends one from Cedars Sinai in LA who said since I had a MX and no nodal involvement nothing more was needed except an AI

However UCSF recommended a milder short form of chemo and herceptin based on a study released by Dana Farber Cancer Center at the end of last year when I was diagnosed. They said that Taxol/ herceptin for 12 wks followed by herceptin for the rest of the year after that was very beneficial and important for all HER2 + patients even those with small tumors.

If you are over 1 cm they always treat with chemo/ herceptin, now, even below 1 cm they tend to do soalso.

I did 12 wks of low dose Taxol/ herceptin, and am done with that, and now going for herceptin once every 3 wk

Thank you Suladog. I appreciate your response and insight. I am self-employed so for me I feel chemo is a game changer meaning I need time to figure out my plan of action on how to pay my bills etc if I am not feeling well. I am a person who likes to be proactive verses reactive. I am positive that all will work out but it is so hard to be on someone else's timeline to find out next steps.

I know I will be fine in time....I just need to get back in my positive place that I am in control verses BC being in control of me. Again, thank you for your feedback.

So I live in Boston, and I am one of those who discovered their cancer VERY early. My tumor was only 1.5mm. I also had high grade DCIS with a microinvasion.  My tumor size would indicate no chemo.  However, my her2 positivity is very high (FISH of 4.8). my MO spoke with the folks at Dana Farber, and then with other MO's in the area - and the her2 positivity made me go with chemo. The Dana Farber study is indicating that a Taxol + Herceptin regimen in people with my kind of tiny tumor had extraordinarily low recurrance rates. I decided to go for spectacular odds and take the side effects. I'm only 40 and have two small children.  Good luck with your decisions.

Had my fourth round of chemo today. Feeling pretty good now, but I came home and slept 4 hrs straight!!

I get an anti-nausea, benadryl, steroids each time. Also had got a long acting anti-nausea but this time the pharmacy had overlooked ordering it. So after talking to my oncologist, I decided to go ahead, with a couple tweaks. First he gave me IV Ativan and also a perscption for it. He thinks I have ancipitory nausea. Hard wired into my brain so I get real symptoms. Like a person avoiding a restaurant where they previously got sick. I'm also getting Nuelasta tomorrow and been advised to drink Ensure or Boost. I had lost 7 lbs since last treatment. (3 was weeks ago ).

MN - I'll add to the valuable info others have contributed. I'm seen at MD Anderson and was initially diagnosed with 3.5cm DCIS, but surgical pathology showed grade III triple + 6cm DCIS with 2 small foci of grade II IDC that were 2mm and 3mm. Originally my MO told me I would only receive tamox (I have osteoporosis so no AIs). I was not happy with that as my only option so my MO brought my case before the review board. Recommendations were mixed with some agreeing with tamox only, others prefering Taxol + Herceptin and others suggesting the ATEMPT trial for stage 1 HER2+ BC.

I went with the ATEMPT trial and was randomized to the arm receiving T-DM1 (ado-trastuzumab emtansine...also known as Kadcyla) by infusion every 3 weeks for 1 year. For every 4 trial participants, 3 are randomized to T-DM1 and 1 is randomized to TH (the current standard of care). T-DM1 is an antibody drug conjugate with side effects that are relatively easy to deal with in comparison to chemo and is currently approved for use with metastatic BC. By using Herceptin as part of the T-DM1 conjugate only HER2+ cells are targeted. So, unlike Taxol, you are not delivering chemo to your entire body which results in fewer side effects. Both approaches use Herceptin and I have those typical side effects, but nothing too terrible.

I'm happy we have choices with triple + BC and hope you find a choice that works best for you. If you would like to know more about the ATEMPT trial, you can learn more here https://clinicaltrials.gov/ct2/show/NCT01853748 or on the ATEMPT discussion thread here on BCO at https://community.breastcancer.org/forum/80/topic/....

Best of luck to you!

I have two daughter, one 33 the other43 and the younger daughter had her genes tested and they came back negative for bracca 1&2 . They told her that my BC% was only 5% because of my age. But she had a 50% possibility with her dads melanoma and his mOms ovarian cancer. They told her to check back in 15-20 years because they have her genetics but not all results are known today. More will become known as science and genetics catch up.

congrats runningcello!

runningcello - yay!!!