TRIPLE POSITIVE GROUP

lita - I was diagnosed at 54, and ran Predict 2.0 for that age, 10 years younger, and 10 years older. There I show almost no difference between stats at 44 and 54. When I changed the age to 64, the initial number alive without adjuvent treatment drops, but the benefit added by treatment remains pretty steady, so I would guess it has to do with age related lifespan and potential co-morbidities.

HapB - I think your MO might be referencing the Aphinity trial -

"At an early follow-up of 3 years, 93.2% of women who received trastuzumab alone had not developed invasive disease, compared with 94.1% of those who received pertuzumab and trastuzumab—a difference of 1%."

Thank you everyone for your comments and thoughts, I appreciate it.  Sometimes you can't see the tree's for the woods.  

SpecialK  thank you for the link, it was VERY informative.  Thank you also for pointing out that when I was dx'd, Perjeta was only approved for neoadjuvent administration.

My numbers were good today and I received chemo today, everything went well.  MO adjusted dosage to a tad bit lower for the Taxotere and Carboplatin but, kept my Herceptin at the same doseage.  My echo came back fine as well-no changes with the heart.

I had Perjeta on my mind for several days and had researched but, I was confused by the wording in many articles.  Unfortunately for me, I sat by a triple positive TODAY who now has a reoccurrence 3 years out, mets to the hip.  She told me her story and my mind was like a ping pong ball bouncing around, I wanted to scream out "shut up, I can't hear this" but I wanted to listen and be compassionate as she was hurting, venting and scared.  I am such an ass and coward for feeling that way.  She had a lumpectomy, node negative, approx. 2 cm, IDC, TCH and radiation three years ago.  Now she is TCHP regimen.  I opted for Unilateral MX.  Another reason for wanting clearer info on Perjeta.             No guarantees in this, I have to remain positive and keep my chin up!!!!  

Once again, thank you everyone for chiming in and giving me your thoughts on this!

~Melanie

Hi. On the subject of Nerlynx or neratinib, the theory is that the molecules of this drug are small and accordingly or therefore can or could pass the blood brain barrier. Herceptin does not pass the blood brain barrier ("BBB") though it could through a different delivery method. Despite the side effects, the notion of tackling the BBB is very interesting to me for reasons with which we may unfortunately be familiar.

MoodyBlues, similar to your experience, I have had a neighbor during an infusion who was dealing with a recurrence. This is very frightening when you are fighting for your life and in the midst of treatment, knowing these are the woman who are bravely participating in critical drug trials. Your feelings are valid and understandable. I personally have taken a draconian approach with family and friends and asked specifically to be kept out of the loop on sad or bad news when possible. It's difficult to stay positive and not be overwhelmed with fear. I hear you.

Dear Members,

We are jumping in to say that these past few comments, in particular, are very important with respect to self-care. Hearing others' stories whether they are in your real time life or here on the boards at a time when you are feeling vulnerable can be stressful. Please remember and try not to compare your situation with others as everyone responds to cancer and its treatment differently. Thanks to all of you for offering these helpful tips. The Mods

Thank you Moderators, I totally agree.  There are times that I am totally fine and can listen and encourage etc.  I guess after a very hard chemo #3, platelet infusions and having to skip chemo #4 for one week I was in a very vulnerable state.  I am usually a glass half full girl looking for the silver lining but, in this instance I was not.  I am grateful that I have a great doctors and two support groups who help each of us walk through the spots like these.  Also very grateful that God has got my back in the weee hours of the morning to talk to.

Yes, we are all so different and I cannot compare my walk with cancer to someone else, I sure wish that I had handled the situation differently, I feel like I left her down by not giving her a pep talk.  Once again Moderators, thank you for chiming in and offering your support!

cherry - yes, exactly. Different areas of the same tumor can have a different grade. My experience has also been that often grading done on your biopsy sample(s) is the grade that becomes your clinical stat. Some surgeons order grade on removed tumor samples, but not always. That said, it is more the norm for Her2+ patients to have grade 3, due to the aggressiveness of this type of tumor. Grade is comprised of three characteristics, each is scored from 1 to 3, then those scores are added together to reach the number that corresponds to grade - a total of scores that are 3-5 is grade 1, 6-7 is grade 2, 8-9 is grade 3. Tubular differentiation is the first aspect, the 1-3 score is based on the percentage of tumor material forming glandular/tubular structures. Next, is nuclear pleomorphism, the 1-3 score is based on cell and nuclei sizing and appearance. Last is mitotic count, the 1-3 score is based on number of cells in the process of dividing. As you can imagine, there is potential for different areas of a tumor to vary, but I feel this may be more common in Her2-, HR+ tumors.

moodyblues - I'm happy to hear your last treatment went well and your numbers are good!

Don't be too hard on yourself, you have been such a positive influence to so many in this forum and your feelings are justified. Recurrence is a fear we all have but as the mods and others here have said, our bodies respond differently and no 2 experiences are alike.

AliceAgnes is so right! I too have bad days and I beat myself up for not being positive all the time. We need to allow ourselves to feel what we feel without being self-critical.

Tres- let us know what the Dr. says about Neralynx

Hello Ladies, good morning. I've been a member of these boards since my diagnosis las year, but I never stopped by this group even though I'm +++. I write because I am on day 6 of Neratinib. My oncologist is a ninja and was able to get me approved for it within 2 weeks, so it is already available for those of you who want to ask your doctors about it.

I've had no side effects and am feeling fantastic. I finished Herceptin April 24th and I am pretty much back to normal and just trying to lose the 36 pounds I gained throughout treatment. For those of you who are just embarking on this most difficult journey, stay strong and positive, it does get better. Eat healthy, exercise, laugh, get some sleep and try not to worry too much. I promise you will feel better with each day that passes.

I never understand how to post on these boards.... I did but my answer didn't show... anyway I read extensively and it seemed like it was tailor-made for me, then I asked my doctor and she decided to put me on it because I had a positive node and I'm HER2+++. They have me on baby aspirin as well, to help in preventing recurrence.

hap - my educated guess is that most oncologists will not put stage 1 Her2+ patients on this drug due to the study on which its approval was based not including them. I think this will be a clinically assessed risk profile decision for most patients. Not sure how insurance companies will respond to this either, but again feel that, at least initially, it will be a risk based decision.

specialK,

what stage was the neratanib approved for? i am stage 2 a,node negative and i am not sure if inqualify for it just in case...thanks

thanks specialK, i will ask my onco next time i seeher. one thing is for sure ,i am tired of SEs.lol.

I asked my Oncologist about Nerlynx at my treatment earlier this month.

He said it might improve my non recurrence by 1% and he did not believe it was worth the possible side effects. My non recurrence number is 94.6% based on my MammaPrint.

I figure if this cancer comes back with the number I got, it was going to come back no matter what I did or did not do.

BTW, my last Herceptin in Monday!!!

Vicky