TRIPLE POSITIVE GROUP

Lita, it did, thank you, reading it right now

Lita, thank you for the link and now I recall that I have already seen this table somewhere when I just started to search the internet, do not even remember if it was before I found out about my tumor type, or if it was after. These are much better looking statistics but the question is why there is so big difference in different reports and studies. I need to learn how to sort it out. Thanks again, Cherry

HapB and Vicky responded so beautifully to you Cherry and I agree with all that they said.

I will add that my anxiety came in waves - immediately after diagnosis i was paniced for weeks. Then I was so focused on my double mastectomy that all my mental energy went to recovering. Then I was focused on starting chemo. A few weeks into chemo I again became very anxious all the time. I finally broke down with my oncologist and she said it was very common to feel this way and prescribed a low-dose antidepressant. I also began seeing a psychologist. Both of these have helped me enormously. I still worry, but it doesn't feel as desperate to me. This forum is a great support but is also useful to talk in person with a professional therapist who is experienced with bc patients.

I hope you find moments of peace!

Sending hugs to everyone!

Oh, HapB, thank you! Some people are just great in encouraging people like you are, I think I am just good in whining, at least now. I used to be good at my work before though, do work for an global US corporation actually. Now when I sometimes dive into work and forget about my bc, I still feel I am not that bad at what I do, but when I get back to my new reality I just wonder where is this person I once used to be, it has just been over two months. I would like to continue working but my problem is my mental condition is so unstable, that I switch between being a normal person for a while to being a complete trembling wreck. I never used to be so whiny for long periods of time, but on the other hand I never had any life threatening diagnosis before and honestly speaking did not expect to get any at this age. I know how stupid this sounds but I did not, this is the only explanation I have. My parents do have some complaints about their health that come with age, blood pressure, joint pain, but overall are healthy (knock on wood) retired engineers in their almost 70-es. My grandparents died in their 80-es except for the parental grandmother who died two weeks after my father was born, my maternal aunt is 77, my paternal uncle died last year of colon cancer but he was my father's younger half brother, we only shared genes through my paternal grandfather. I was not worried before, stupid I know. But I still was cautious, I insisted on the mammograms and appointments but was not prepared for it. But I do not think anyone can be.

I have greatest respect for people who fight multiple cancers, for you in particular, because I do not know so many. You are amazing and how you have handled it so far is amazing, to be able to, as you say, face it, is worth so much for anyone who has this disease because I want to be able to pull in all resources just to stay myself and do not instead lose myself in this situation. And I hope my eldest daughter will learn how to handle the tough situations in life, it is the young one my heart breaks for, she is too young and is just a child, she does not have the same understanding, she just gets scared and unprotected. I hate that we are going through it all when she is still so young, but there is nothing we can do about it but try our best and remain calm for her sake and try to maintain the same routine for her. I know the protocol, and it looks good on paper so to speak, but in reality I am losing it at least once per day as I said. This is something I have to work on, there is no other way. And I honestly do not like to compare someone else's cancer to my own, it is still what it is, and it cannot be much better than any other's even if it is different, it is still cancer. I want instead to hear it is 100% survival and no risk after treatment. We all do. Thank you once again, as I said, when I feel so desperate I do not even expect people to read or respond much, it can feel better to pour it all out. May we all live long. Hugs, Cherry

HapB, my cat is staring at me at this very moment, she is my most devoted audience when I am alone or when it gets late like right now, it is half past 11 here. I think I will put a picture of her as my avatar. I already had my first Taxol and Herceptin, thank you for your prayers and it is scientifically proved that the cats have soothing effect on people who experience depression, I know my has. She also snores and is the size of a smaller seal. Cherry

Cherry, I'm speaking from personal experience here - you need to hit this emotional distress now, with the biggest bat you can handle. Please talk to a doctor you trust about what you're going through and ask about an antidepressant. You're going through so much and as time goes on the assault on your body from the chemo etc. won't make it any easier, I would imagine. I don't mean to be so pushy but what you've described I've felt myself at another crisis in my life and trying to tough it out just meant it took longer to get my head straight. Think of it as vitamins for the brain is how my doctor described it.

This is what I dislike about studies and their interpretations:

From the study Adjuvant Pertuzumab and Tastuzumab in Early HER2-Positive Breast Cancer as reported in the July 2017 NEJM: (Italics mine.)

"In the cohort of patients with node-positive disease, the 3-year rate of invasive-disease–free survival was 92.0% in the pertuzumab group, as compared with 90.2% in the placebo group (hazard ratio for an invasive-disease event, 0.77; 95% CI, 0.62 to 0.96; P=0.02). In the cohort of patients with node-negative disease, the 3-year rate of invasive-disease–free survival was 97.5% in the pertuzumab group and 98.4% in the placebo group (hazard ratio for an invasive-disease event, 1.13; 95% CI, 0.68 to 1.86; P=0.64). Heart failure, cardiac death, and cardiac dysfunction were infrequent in both treatment groups. Diarrhea of grade 3 or higher occurred almost exclusively during chemotherapy and was more frequent with pertuzumab than with placebo (9.8% vs. 3.7%).

CONCLUSIONS

Pertuzumab significantly improved the rates of invasive-disease–free survival among patients with HER2-positive, operable breast cancer when it was added to trastuzumab and chemotherapy. Diarrhea was more common with pertuzumab than with placebo. (Funded by F. Hoffmann–La Roche/Genentech; APHINITY ClinicalTrials.gov number, NCT01358877.)"

I find the conclusion misleading. Yes, the majority (63%) had node-positive disease but that means 37% did not and the 37% who were lymph node negative did better with a placebo than with the addition of Pertuzumab. I'm not sure if statistical significance was achieved in relation to the placebo group but they clearly had different outcomes.

hi Cherry, I'm so sorry if my post sharing that I thinkyou have good statistics suggested that I think your anxiety is less valid because you are a lesser stage than I. That was absolutely my last intention.

I want you to know that I am here one year, two months after diagnosis and still regularly feel in shock, grief and immense fear. It's constantly on my mind and I know that no one can tell me the words I want to hear. Don't ever let anyone make you feel as though you should be "over it" if you're not. I lived in complete panic and despair for six months solid. And then after that, I was still a mess.

Yesterday, based on this horrible wave of despair, I wrote to a few girls that are on my FB group page I started in our area. They all had similar diagnoses to mine. Every one of these four women wrote to me saying that they never looked at stats, don't want to know them, and have worked hard to find happiness in their various ways...through family, through prayer, etc. They for some reason have found more solid ground than I. We are all different in how we process things. I have always been a person that falls down rabbit holes when threatened; I have a counsellor I see to discuss this. I sometimes honestly don't know how to do it. I am excellent with trying to get active in many ways, but my emotional stability and security is just on this knife edge.

So all that to say you're not alone. We are on an epic journey toward finding a zone in the midst of a catastrophe. It's like a transformation of self, and I think some tend to accept and transform in different ways. We all transform, but I personally have had a very painful time accepting my new reality. But I'm working my ass off on it and people here and in my life help.

On the parenting thing, this has been immensely challenging as I have an 8 and 11 year old. I was always open and I do say the cancer word. I tried to "normalize" it for them to reduce their fear. I've tried to hide my breakdowns so as not to alarm them, but theyve also seen tears as they need to know that this is human. My counsellor has said that my approach and reality with them is teaching them resilience. I do feel I have managed my parenting role well so far. I was pretty shattered the night before surgery when both my kids showed some distress and worry. I lay with each of them individually and we worked through it.

I am currently at my cottage and trying hard to rally myself and regroup. I am not going to continue researching for stats; it makes me ill. Instead, I am reading "Radical Remission" as well as another book. I have to stop filling my head with bad. I will not get the assurances I want. I want to be here for my kids and will just do everything I can to increase those chances. I will also pray that nanotechnology and immunotherapy make some leaps and bounds soon; these are the next beacons in the upcoming decade of breast cancer treatment (so I read).

Well, that's the longest post I've written. I'm so sorry. I hear you, Cherry. You are normal, I am normal, and I believe you will find your solid ground. Xoxo

Lita-thanks for that information. I have been angry for two years because my docs didn't give me Perjeta and had no reasons why other that I had surgery first, which wasn't my choice. I kept wondering what if I got Perjeta? Would my odds be better? This study makes me -a node negative gal-relax a bit

Hallo group, As the first "nightmare year" comes to a close thought I would check in and remind everyone that most long time survivors are not hanging around these websites, they are out living life. I am not a long time survivor but managed the first year and ended it with NED. I have one Herceptin shoot left and then I am on my own basically with the words, "Check yourself every two weeks" Great, how on earth am I going to do that considering I did not even feel the giant they found at the yearly mammogram...Well, moving on living on hope and hearing the fears get better over time. Reading some of your posts of fear and I know how hard it is to handle. I did smoke cannabis and it did help, so I am an avid cannabis friend at this time and fighting for those rights since it is illegal where I am. There are other forms of medication to handle fear and anxiety and for those that needs them, I suggest taking them. Who is to say what you need to do to get threw this? No one in my opinion. You need to do what you have to. In the end I think it is about acceptance, but it is not an easy place to arrive to, we do want to live. Period. When I had my first scare of reaccurance not long ago, that turned out to be nothing, I talked to my mother 95 years old in depth about death. She is old and her body is accepting the thought but mine´ ´ isn´t yet, but it was an important conversation that put my mind into more of an acceptance. What is meant to be will be kind of mode. Today I am going for a job interview. Yes life change and your priorities too. All and all I just want to give hope and reassurance for those just starting, most come out of this and continue to live life, hopefully putting this past year into a (year) and enjoy each and every day more fully than before.

Hello Triple positive girls! So nice to see some of the regulars still on this thread

I do check in once in awhile but don't post as often. This site helped me immensely when I was going through treatment and is so valuable to the BC community

I'm 6 years out this month. Life is great! Still on hormone therapy but feeling quite good ( I'm more tired but I'm older too) diagnosed at 42 with 2 young kids. It was a difficult journey and it was impossible to see the light at the end of the tunnel when you are in the thick of it but it does turn around and before you know it you're 1 2 4 years out!!!!

Stay strong!

Hi Kattis!

Happy to hear that you had such a good discussion with your Mom. It's interesting but I'm more at peace with death since my diagnosis three years ago. Good luck on your job interview!

Kattis894, my sentiment exactly, I am here a lot/ Cherry

PoseyGirl, something to think about, I do not know if we have it here in the same scale that I can anticipate so many joining here but definitely maybe. Kattis894 is also from Stockholm, I already contacted her, at least I know someone in Stockholm with my type of bc, this means a lot for me, otherwise I was feeling I was becoming a diagnosis. And please keep posting whatever you can find on all new research you have mentioned, I will be happy to read everything, hugs Cherry

Tusen tack, Kattis! I noticed that your English was really good, now I understand why. I will look up this FB group, thank you! I bumped in into this forum when I was combing the net for information but I agree with you it is very interesting to compare how the treaments look like. Except for some minor things they though look the same. Hugs, Cherr