TRIPLE POSITIVE GROUP

astyanax66

Great advice, Laughing Gull. We can be totally honest here, right?

I'd have actually preferred a bilateral mastectomy. No one pushed me into a lumpectomy; it was my decision entirely. I read the stats, and I feel my treatments are entirely appropriate. I would've preferred it, even though recovery is harder, to avoid radiation and to lessen the fear of recurrence every time I go in for a mammogram. My reasons for not doing it had little to do with cosmesis (my mom looked very nice with her prosthetics--her reconstruction was horrible and ended up being removed, so I know I wouldn't do it) and more to do with, sigh, my spouse. He of course would've supported it if recommended, but told me he was so glad we had the option of not doing it. My surgeon had a lumpectomy herself, and she did a superb job with mine (25% of my tissue removed). But yeah, my mind would be more at rest if I didn't have to face the Hunger Games every six months. And 2 hours of driving per radiation session is going to be very, very challenging. I realize it's just five weeks, but that's a lot of time and money out of our budget, which has already been tightened severely.

I'm glad everyone here respects others' decisions. That's very affirming to me.

Laughing Gull, you sound prepared and of good spirits, so I hope all goes wonderfully for you!

dee

deni1661

Laughinggul - praying your surgery tomorrow is smooth and recovery is quick. We are with you in spirit! I applaud your determination to make a decision that was right for YOU and not anyone else.

jstarling - we are here for you all the way. You're in the thick of things now and it's easy to get down. Smoothies were my go to meals when I didn't feel like eating. It's important to eat even when you don't feel like it. I like specialk's advice to view what is ahead in percentages or by crossing off a list. That way you can see progress. My husband and I called my treatments "lunch dates" which put a positive spin on the hospital trips. I also recited or wrote down the things I was grateful for, including the infusions that were getting rid of the cancer in my body. I found this worked the best for me - appreciating the good things in my life made the not so good things more tolerable. Remember, treatment is temporary and this too shall pass. Hang in there, sending hugs.

Ingerp - great quotes. I'm going to post those on my vision board! And coach vicky's too.

Moody, thanks for the inspirational post. Well said! Faith and positivity make each day worth living no matter what you're experiencing. Visualizing and saying "I am" is a powerful way to stay focused and positive. I work on that everyday and when negative thoughts start to creep in I remind myself not to let anyone or anything steal my joy.

deni1661

specialk - I followed all your tips and had minimal LE swelling from my travels. My PT was impressed at how well my arm and breast area looked after flying. The sleeve was a lifesaver I think, I'm glad the were able to fit me for one so quickly. Thanks again 😊

LaughingGull

Thank you ladies for the best wishes. I am at peace. Will update next week!

SpecialK

laughinggull - you got this!

deni - yay! I am so glad you did well! You have another trip coming up, right?

Jjewel

Hello All, I hope it's ok for me to join in! I woke up in a panic and have been reading. I had neoadjuvant chemo before my BMX with Direct Implant Reconstruction 5 weeks ago. The chemo for me, was very difficult but my path report came back as positive as you could want, I am very thankful. My recovery from surgery has gone very well too. Next week I resume Herceptin and Perjetta infusions. My Oncologist seems to think this part will be easier than the chemo but I'm hoping someone who has gone through it can confirm. I know we are all different but I'd love to hear it was manageable! I want to cry thinking of more treatments ahead but I know I've got a lot behind me. Any encouragement is welcomed! I have a great husband, I went back to work for the first time in 6 months. I've enjoyed being "normal" the last few weeks. I was working 2 weeks after surgery and found it thrilling to not be home with chemo SE's!

shelabela

cupcake, i msged you back! You can do this! We are great supporters here.

Ladies i am finally feeling good about myself! I got ID at a bar rhe other day. The young man couldn't believe i was 44. He accused me of having a fake ID....😆

coachvicky

Shelabela ... that id'ing rocks.

Welcome 1Cupcake2018 ... yes, join in. Sounds like you are doing great. The triple positive treatments are the longest and we have available the best treatments Go ahead and cry. It is best (I think) to cry it out rather than hold feelings inside. Your journey is almost over! Look at how far you have already journeyed. Think of this as downhill from here.

Vicky

Jstarling

Coach, Just hearing you say that we may have the longest treatments, they are the best treatments available and I am grateful. Thanks for cheering us on

PoseyGirl

Hi Ladies,

I hope you're all having a good week!

I have a quick question...do any of you get sharp shooting pains in your operated side? I do remember getting some sharp pains here and there about 6 months ago (or more) and then nothing for a long while. I'm 1.5 years out from surgery and am wondering if this is normal? I know that nerve regeneration can do this, but 1.5 years out??

Thanks for any insights you have,

Suburbs

Hi everybody. Thoughts and meditations for everyone doing chemo and surgery. Please post and let us know how you are doing. Kae, Cherry-sw, please check in when you have time. : )

1cupcake2018, I did H only. It was not too bad. There was fatigue but I would chalk that up to the cumulative effect of chemo and surgery. I'm still tired. You are doing HP. I did perjeta for 6 cycles and had a bad skin reaction that was brutal. I could not have continued. In your case, I think you should be pleasantly surprised. If the dreaded skin rash did not appear during your initial TCHP regimen, the I imagine that your hair will start growing and your taste buds will return. Everyday will get slightly better and the you will wake up feeling good. Herceptin is a walk in the park compared to TCHP. Please keep us posted and welcome.

Poseygirl, I have sharp pains from time to time that come out of nowhere and then they go away. You might ask your MO to weigh in. My MO gets concerned about persistent pain that keeps reappearing and does not seem to go away. That's the question I always hear. Hope this gets better for you.

bareclaws

HapB said:

> but it is just a fact that thousands of women suffer permanent heart damage from Herceptin and many die from it.<

HapB, please share your source for those numbers. Exactly how many women as a percentage of what population and how many have permanent damage and how many die from it? I really want to know. Will share your information with my cardiologist SIL, who has had a patient with Herceptin heart damage (but she recovered nicely)

bareclaws

HapB, I’m not denying that there are risks. There are always risks—with every type of treatment.

I’m sorry you don’t have time to list citations. It would be great to have some hard numbers to corroborate your statements.

Cowgirl13

Hap, where do you get your figures?

astyanax66

I had a good chat with my tumor team about Herceptin, as well as two colleagues who are in the field (pharmacology and oncology nursing). They were all honest about cardio risks, and I had a good echocardiogram, but the bottom line is that for me personally, the benefit outweighs the risk. That’s my sample size of one. I can’t speak for anyone else. I think like most cancer “stuff,” gathering all your data and then pondering it is very important in all aspects of decision making. I’m fortunate to have access to not only academic libraries but folks who can help me make sense of things like “pleiomorphy.”:)

Dee (now trying to understand epigenetics and variant of unknown significance

Jjewel

Thank you to all who have responded to my Herceptin inquiry. I should have been clear. While we are made aware of the possibility of mild and or dire side effects, it still seems the benefits of the drug outweigh them. I'm sorry for any of you who suffered the serious side effects of it. I'm over joyed for the ones who sailed through and I expect the majority of us willfall somewhere in the middle.

It's so traumatizing to be going through a process with no good options.

Jjewel

Thank you to all of you for sharing. This is a good sisterhood to find information and comfort. Sleep well, Jenn

SpecialK

I think using phrases like "thousands of women suffer permanent heart damage" and "many die from it" is inflammatory and not what is cited in study materials, so looking at what we do know is a better way to frame the discussion of cardiac risk and Herceptin use. From a numbers perspective, approximately 250,000 new cases of invasive breast cancer are diagnosed each year. Her2 overexpression is present in about 20-25% of those newly diagnosed cases, so roughly a minimum of 50,000 Her2+ patients who would be eligible for chemo and Herceptin. Most of those on Herceptin who have a reduction in ejection fraction (LVEF) - the 5-30% mentioned above - have a recovery of their ejection fraction by discontinuing and/or postponing Herceptin, or if their reduction is not severe enough to discontinue, their ejection fraction recovers at the end of treatment. Some studies have shown that 3-4% of those who receive Herceptin have cardiac issues that are more severe, so minimally 1,500 per year. Some number of the 1,500 with cardiac impact have also received Adriamycin which is a known contributor to permanent cardiac issues - and the warning in some of the links posted above - the focus of those articles is less about the risk of Herceptin only, but rather the combination of Herceptin and Adriamycin together. Those who have not combined Herceptin with an anthracycline chemo drug have a reduced risk. Breast cancer patients receiving various chemotherapy regimens without Herceptin have a cardiac issue risk of about 1%. Age when treated is also a factor - heart disease, undiagnosed cardiac risk beyond what is revealed in a baseline echocardiogram or MUGA scan can be exacerbated by treatment, of course. It is also important to look at the link above from BCO that is in the post directly above. The date is 2011, when use of Herceptin for early stage patients was fairly new. The data gathered prior to that time was for metastatic patients, and the recommendations for monitoring in that article are now incorporated into standard of care - a baseline test, then quarterly checks during the year of Herceptin administration. Also, important to note - more women will die of heart disease than from breast cancer each year, approximately five times as many. It is difficult to determine how many women who receive chemo and targeted therapy for breast cancer have underlying and undiagnosed cardiac problems, which are then exacerbated by the treatment they undertake to prevent breast cancer recurrence. If 250,000 women die of heart disease each year that risk far exceeds a cardiac complication from Herceptin use. As has been pointed out, depending on clinical pathological features, the risk of not receiving Herceptin outweighs the risk of cardiac issues for many of us on this thread.

SpecialK

hap - I don't think anyone is arguing whether Herceptin is a drug that has potentially serious side effects, or denying that some people experience deleterious issues after its use. My oncologist and I certainly discussed the potential for cardiac problems - it is the reason why heart monitoring is ordered throughout treatment, even way back when I was treated 8 years ago. People simply asked you for studies to back up your statement of "thousands" and "many" - which is not the same as denying that these side effects do exist. This is why I tried to provide comparative figures. It is the way you have worded what you say, which was not in the context of how many are treated without suffering these side effects, that makes what you are saying inflammatory. The "walk in the park" comment was true for the member who posted it, it was her personal experience. For many women, once chemo is done Herceptin by itself is relatively easy. I am truly sorry that your personal experience does not reflect the same experience, but you are in the minority.

Juli24

Hello ladies! I came back to this thread to see if the negativity & unfounded information was still being presented as actual facts. I was glad to see these types of inflammatory remarks are being called out. Bravo! I would hate to see ladies behind us make decisions based on fear mongering.

My personal experience with H & P was just that - a walk in the park....despite having issues towards the end of the year of treatment when my ejection faction (LVEF) went down. My MO had been watching it closely. Since I was almost done he decided to discontinue treatment thinking I had enough to be effective. My numbers came back up quickly into the normal range. I never had any symptoms nor lingering effects. I felt safe throughout the treatment and had put my trust in the expert.

Because of the cards we have been dealt we all have a rough journey to complete to the best of our ability. This is not a journey any of us wanted to take. We are blessed to have wonderful kind smart women to guide us while holding our hands. We are sisters. My best advice is to find a doctor you can trust and follow his advice. Fear and negativity are your enemy. Push those thoughts and people out of your life. Those are not emotions that are ever going to help you. This is the time to take care of yourself in whatever manner you need. For me it was a quiet place for meditation and rest. Life had to be simple. I found a new way of looking at things...saying yes to that which was in my best interest & made me comfortable & as happy as I could be. Saying a resounding NO to that which didn't make sense, stole my calm inner voice and brought that negativity within my circle of life with cancer. Everyone has to do their own thing whatever that might be. If reading medical journals or articles is your thing that's cool as long as you don't constantly push your ideas on others. Search your conscious. Is what you are doing making your life better in these tough times. If not - change. I wish you peace of mind and send hugs to all, Juli

VVV

Reminder of rule #11 of the BCO boards:

"We want to hear what you think, so please, post your own ideas and thoughts. If you share something that doesn't belong to you, make sure to cite your source. This is especially important when it comes to medical or health information. Personal health experiences are just that, PERSONAL experiences, and should not be promoted as fact or general knowledge. Studies, statistics, or information that you're sharing should be sourced and cited from a reputable place."

I'd also like to share this article from 4/9/2018: https://www.sciencedaily.com/releases/2018/04/1804...

"Brenner's team evaluated data from almost 350,000 patients from US cancer registries. They analyzed cases of women who were diagnosed with breast cancer in the years 2000-2011 and subsequently received treatment by radiotherapy or chemotherapy. Comparing the data of the patients with data on the female average population in the United States, the scientists obtained a clear result: The long-term risk of mortality from heart disease is not higher following breast cancer treatment than in the average female population. This holds true for chemotherapy as well as radiation therapy. Special treatment methods for the subgroup of so-called HER2-positive patients are also not associated with an increased risk of dying from heart disease."

shelabela

Cupcake, did you get sick from chemo?

Here's a funny for your Sunday...... i bartend at a local bar and it's the type of bar that has a huge amount of regulars. I'm not a shy person and I've talked about my upcoming reconstruction, well the regulars decided to start a list of who could/ would like to offer me some extra "fat" to get me the new "boobs" they want me to get. So far if i was to use this amount of fat donated i think I'd be about a size 36OMG

Going to try to go golfing later today. What about you ladies, are you getting out to enjoy spring

coachvicky

Hello All,

In case you did not know ... I love numbers. I love them so much that my minor is in statistics. OK ... maybe not just love but also because I could not pass a second language so I had to select something.

My point ... I can always find a study or number to support my position. It is just the way research goes. Of course, some studies have far more credibility than other studies.

I got so focused on this article at breastcancer.org that I did the following:

I printed the article and took it to my first Oncologist.He dismissed the study.

I printed the article and took it to my Oncologist's Nurse Practitioner.Like my first Oncologist, she stood ground that Herceptin was best and I should finish the treatment.

Then I took it to my Primary Care.H listened and kindly deferred to my first Oncologist.

So I bought the book HER-2 and the movie.

I talked about this going on and on with DH...I mean forever.BTW, DH never once rolled his eyes at me.

I would wake up early morning and reread the original study.

DH drove us to Tampa, FL so I could get a second opinion from SpecialK's Oncologist.That entailed getting an insurance referral and hiring someone to stay with our three dogs not to mention the time, gas, hotels, and food.

I believe this article and my obsession with it was the foundation of why I did not click with my Oncologist.

And at some point of treatment, I let go.I heard my Oncologist's words (I would not change one thing in your treatment and I probably over treated you.) in a different light.I heard what DH had been saying to me (Vicky, Dr. X is trying to save your life.)

I welcomed my chemo as liquid gold.

Ladies ... all I know is triple p's have some of the best treatments available and these treatments continue to evolve.Sure there are consequences with all treatments.Some of us have a "cake walk" and some have "pure hell."

In John Piper's book, Don't Waste Your Cancer, he writes:"We waste our cancer if we seek comfort from odds rather than from God."

Be kind to each other. Be supportive to each other. We may all have a triple positive breast cancer diagnosis and we all walk a different journey.

With Love and Hugs to Each of You, Vicky

coachvicky

shelabela ... With that much fat you are going to have a great rack! And so soft, too.

Vicky

Jjewel

My personal experience was (short story) I got off to a bad start. During my Port placement surgery I had complications. They did 3 surgeries that day and I ended up in the hospital for four days with a pneumothorax. They started my first chemo regiment 6 dats later. Initially my treatment included Taxotere, Carboplatan, Herceptin and Perjetta. I had such adverse reactions to the Taxotere and Perjetta they had to slow the infusions from 6 hours (original plan) to two days. Finally they had to stop as they had given me the limit of the reaction remedy drug (I forget the name at the moment). I was only able to get 3/4 of the Taxotere dose. I ended up in the hospital 7 days later with a fever and extremely low neutrophils and counts. I was there for eight days. My Oncologist then altered my dosage to weekly from every three weeks, eliminated Taxotere and Carbo. He replaced those with Taxol. The smaller doses of Taxol, Herceptin and Perjetta went better. I never had reactions during infusions after my first Taxol but that reaction was minimal compared to Taxotere. Infusions became tolerable. My side effects did not include the usual suspects of flu like symptoms. I was wiped out, had hand foot syndrome, bad acid reflux and my liver enzymes became elevated. After five treatments of Taxol, H & P we went on to surgery. My markers were normal again and my Oncologist sugg

Jjewel

sorry for that, he suggested BMX versus goal of lumpectomy since we stopped chemo early. Good news my path report came back 0 Cancer in any tissue (both breasts) 0 cancer sentinel and 4 other lymph nodes taken fro Cancer side as a precaution. My recovery from BMX with Direct implants has been miraculous! I returned to work (after 5-6 months away) after two weeks! Half days first week but full time, on my feet, taking flights of stairs hourly for three weeks now and I'm feeling great! My hair is growing back and I have fuller eyebrows and eyelashes returning!!!! Yay

Tresjoli2

hi cupcake! Welcome to the board! We hope you will find this a safe space to share your fears and ask questions. I did not have perjeta, but did have herceptin for a year. I did ok as long as my infusions were 90 minutes. When they tried to do it in 30 I hurt!

For those of you having surgery best of luck. These decisions are so hard. I have always said that I feel like I keep having to make "the least crummy decision".

I missed a call from my MO this week. No one can figure out my labs and if I am menopausal or not. I'm starting to get super frustrated. But I guess the answer is...we simply dont know...but my labs make no sense. Sigh...

Juli welcome back to the board!

And just a gentle reminder to everyone here...you can block posts you're not interested in reading...

Gearing up for my daughters 6th birthday this week. She was getting ready to celebrate her 3rd birthday when I was diagnosed. I made them schedule my lumpectomy for after the party. My how time flies...

Love to all!

Tres

Suburbs

Juli24, welcome back. Please stick around.

On herceptin, it is what it is. When you are her2 positive and meet the guidelines, that's what you get. There are no alternatives, only add-ons, Perjeta and later Nerlynx. Pick your poison. Her2 positive is serious stuff.

I received 30 pages of warnings and constant counseling and monitoring when I was doing TCHP, then H only. I'm getting the same monitoring and warnings about nerlynx.

When there are no alternatives, we just have to jump into the deep end of the pool and hope for the best. That is our lot.

I have one parting thought. So glad we are here and can have a discussion about Herceptin. Approved in 1998 for MBC and 2006 for early BC, there are many who did not have the treatment and they are no longer here. Being triple positive is serious stuff. We must steel ourselves and hope for the best. That is our lot.

Cupcake, sounds like you had a rough road but a determined oncologist who would not give up on you. This is a good thing. I hope round 2 will be more tolerable and think your doctor is going to do their level best to monitor based on your descriptions. Hugs. Now back on the field and we'll be here to support you.

deni1661

Shelabela - thanks for the Sunday funny and reminding us to enjoy each day fully in as much positivity as possible!

Tresjoli - enjoy the week planning for your daughter's birthday! It is so much fun to be around little children; my grandkids have always been the bright spot in my life no matter that I am going through! I hope your medical team can figure out your labs soon!

1cupcake - great news on your pathology and recovery after all you went through. I'm happy to hear things are going well for you!

In regards to the stats discussion - I do not waste my time worrying or researching stats but rather rely on my faith to see me through whatever may be in my future. I am a numbers person too but at some point I decided to let it all go and focus on TODAY and how great I feel (side effects and all). We have to get through this cancer journey in our own way and I wish each of you peace and serenity every day!

Spring has finally arrived in WI so I am enjoying this warm and sunshine filled day with my kids and grandkids and then going for a 3 mile walk. I will be getting lots of vitamin D this week so my immune system will be very happy.

Have a wonderful day everyone!

deni1661

Poseygirl - I have those shooting pains too in my recon breast and I am 1 year out from surgery. I've been getting sharp stabbing pains in my joints lately too, mostly at night. Ankles, elbows, knees....the pain lasts for only a few minutes but they are very sharp. I've been dismissing it as another side effect from the AI but wondering if anyone else has them?