TRIPLE POSITIVE GROUP

SpecialK

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.

Lita19901

SpecialK, When I do mine, with all treatment, at 65 I get 94 and 85; at 70, 91 and 78; but at 60 I get 96 and 89. Dropping back to 55 I get 97 and 92.

I think I want to be 55 again!

Lita19901

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%."

Lita19901

KB and Hap - I think it assumes mastectomy or lumpectomy with radiation since they have equivalent outcomes.

moodyblues

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

FleurDeLis49

MoodyBlues, I'm with you on the mixed feelings sometimes hearing other people's experiences! It's very hard to be compassionate & to accept whatever information of value someone has when they are triggering your fears! I feel like I'm constantly battling that as I try to get information without getting overwhelmed by some stories. I just have to remind myself that every person (and even every tumor) is unique & may react differently due to all the variables each case brings. And also that it's such a developing field with new protocols being explored all the time!

Suburbs

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.

moodyblues

FleurD  Thank you for understanding, it is mixed feelings as I am a very compassionate person.  At that moment I felt fear and just listened, I could offer her no encouragement, that's not like me.  Since I had to skip last week, she will be with my group and between now and the next three weeks, I will have to do a whole lot of praying!  

Suburbs  Excellent advice!  I will have to remember that.  Thanks for understanding!

Moderators

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

Cherry-sw

Hi HapB,

Why doesn't grade matter too much with stage 1 triple positive?

Special K, you mentioned that a grade of a tumor is not homogeneous, i.e. a same tumor can contain different cells in terms of grade?

I am new to this, had my surgery but did not meet the oncologist yet and I am trying to gather as much info as possible in order to be able to ask all the questions.

Still very sad over the dx too.

Cherry

moodyblues

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!

AliceAgnes

Don't be too hard on yourself, moodyblues. Only someone with a good heart, which I know you have, would be worried about having missed a chance to give someone else a pep talk. At least you didn't silence the woman or chew her out!

I, too, have been a less-than-ideal patient at times, and all my friends know it. I got crabby with people who opened windows on a cool day when I was already having a hard time staying warm--I live up north where cold summer nights can happen--and all kinds of little things like that. Fortunately, my friends have forgiven me for these things and I just need to work on forgiving myself, too.

SpecialK

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.

Cherry-sw

SpecialK, thank you for such a thorough answer, really appreciate it.I only had a fine needle biopcy before my surgery so the grade was confirmed after they analyzed the tumor.

deni1661

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.

Tresjoli2

Suburbs thank you for the info.on Nerlynx. I see MO on 9/8 and this is at the top.of my list of topics to discuss with her. Since i had to stop the Lupron (goodness do I feel so much better OFF Lupron) i have been a little terrified....lupron was like a safety blanket for me. But my feet can move again, my body doesn't feel 90 anymore...no more migraines...quality of life versus prevention is such a balancing act for us who are triple positive!

Jumpship

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

moodyblues

Alice, Deni, Kb870, Thank you for your words of encouragement and love.  Chemo# 4 went down on Wednesday, 2 more of the TCH and then 6 more of Herceptin only.  I am getting close here, thank goodness!

Melanie  

Edu

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.

SpecialK

hap - https://community.breastcancer.org/forum/80/topics/857091?page=2#post_5022442

Edu

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.

Edu

I personally decided to do whatever it takes to never go through this again, regardless of the side effects. At the beginning I chose a more aggressive approach with Lupron and Anastrozole, but it gave me horrendous side effects and I was super depressed. My doctor told me it was crazy to put myself through so much and switched me to Tamoxifen, now I have very mild side effects and feeling better every day. My only issue is still my weight, which I can't loose as quickly as I'd like because of this darn menopause.

SpecialK

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.

Suburbs

Hi SpecialK. Have you had any news about the vaccine? I wonder if it will ever come to market.

kae_md99

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

SpecialK

suburbs - are you asking about the GP2/AE37 vaccine trial that I participated in? As I may have mentioned previously, that trial was set up to treat A2- tissue types with the AE37 vaccine, and A2+ tissue types with the GP2 vaccine. This is tissue typing as is done for organ transplant, nothing to do with breast cancer or tumor type. The trial results showed a better response by patients to the GP2 vaccine, so I'm guessing a Phase III trial might eliminate the AE37, but I don't know if they would eliminate the exclusionary criteria on the tissue typing. I did see another trial by Dr. Poeples (the initial doc involved in the inception of the GP2 and AE37 trials while he was at the U.S. Military Cancer Institute) using no exclusions for the GP2 vaccine which ended in Jan of 2017, but it was a Phase 1B trial. I do not know what the future is for any further trialing for GP2 to continue its way to FDA approval, despite the great success so far. The way FDA approval works is to continue past the Phase II process to Phase III, which could take a number of years.

For those who are interested - here is some info about GP2:

http://www.onclive.com/conference-coverage/bcs-2014/novel-peptide-vaccine-safe-effective-in-high-risk-breast-cancer

kae - the FDA approval just says early stage, but the trial was for stage 2-3, after initially trialing the drug for metastatic patients, which is pretty much the norm for a lot of breast cancer drugs. This is the same way Herceptin came to be used for early-stagers - initially it was for mets patients only. Due to the potential for side effects, I think many oncologists will weigh recurrence risk against SEs when deciding whether to add Nerlynx (neratinib) to patient treatment design.

kae_md99

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

Suburbs

Hi. SpecialK, thank you for the update on the trial.

On neratinib or nerlynx for anyone interested:

http://ascopubs.org/doi/abs/10.1200/jco.2014.32.15_suppl.528

https://www.cancercommons.org/tag/neratinib/

https://www.fda.gov:80/FDAgov/NewsEvents/Newsroom/PressAnnouncements/ucm567309.htm

coachvicky

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

deni1661

My MO had the same response as coachvicky i.e. not worth the side effects for me in particular with my non recurrence per Mammaprint at 99.3%.

Coachvicky congrats on your last Herceptin on Monday, woo hoo! I'm happy you have reached this milestone with such a good response