TRIPLE POSITIVE GROUP
Comments
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hap - what method was used to test your Her2 and what was that result?
About fasting, I have seen others do it, but I think most oncologists will veto it - you also need to watch your hemoglobin levels closely. Chemo has a deleterious effect on ability to produce new blood cells - WBC, platelets and RBC - so by association, hemoglobin. If yours drops too much, you will need a blood transfusion to maintain your chemo schedule. I am not saying don't do it, because I think it may have merit - and I have seen some have fewer side effects, but have seen others have more - it appears to be an individual thing.
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Vicky. Ha,ha. I love your sense of humor.
You will have to let us know how close to real they look when finished.
Melanie
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my 2yo had a much harder time than my 8yo. Even now, at age 5...she has a hard time cutting her hair, and equates short hair with being sick. She's constantly asking me if I am going to die, and wants to know how someone will know how to come get her when I do. She told me the other day she thought she would have to walk to her uncle's house, and she didn't know how she was going to manage it. 🤤 My older child handled things way better.
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Finding it hard at #5 to find a lot of joy in my days. I am not used to being and feeling unproductive.... useless, although I know it's not true, my mind tells me it is so. Things that bothered me before, I find extremely overwhelming now. I feel abandoned by some because they are living their lives while I am stuck in this trap. Neglected by others-out of site, out of mind. I feel like some may think I am faking how tired I really am. I had someone say "You knew it was going to be bad" Ummmm no crap! No crap... how can you act like it's similar to the stomach bug.
In January I had all these plans, a move, a marriage, a new job and then February brought with it BC. Yes, I moved and married but, no new job and sickness brought so much isolation. I know there is life beyond BC and I hang on to that thought, my husband reminds me too when the tears come....he doesn't understand why I am concerned about the estrogen blockers that come next. He hears: The cancer is gone because the breast is gone. The cancer is gone because the chemo will be soon finished. He doesn't get the triple positive and the need to block estrogen. He hears: it is gone.
I research and learn and try to apply it to my future. I take these posts you all write and 'know how you are hurting and feeling somewhat the same. I hear fear and sorrow AND all of the encouragement. I talk to God and ask for grace not only from Him but that I would also give myself grace as well during this. I see St. Judes on t.v. and feel bad that these kids are fighting and so sick and then feel guilty for feeling sorry for me.... like I said, I ask for grace for me, from myself. I need it. Tomorrow will be better.
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Moody Blues ... I hear that you have to touch them to believe they are not real.
I will let you know.
Vicky
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Moody Blues,
My Oncologist NP said that triple positive was the hardest treatment to follow and finish because it is so long. I have read from others and experienced my self that rounds 4 and 5 were the hardest. I did not know if I could finish them but I did finish and so will you.
When someone says something shi**y to you, say this back, "When you had breast cancer how bad was it for you?" That should shut them up. It worked for me.
One time the Nurse Navigator said to me about my 3 pound weight gain after a treatment that it was only 3 pounds. Having seen the size of her ass, I replied, "How easy is it for you to lose three pounds every 21 days?" She shut up. Got the MO to write me an Rx for a diuretic and she never mentioned weight again to me.
If it is one thing that I have learned from having breast cancer it is who my real friends and family are. I count my blessings some people are out of my life. They showed their true colors.
I also count my blessings for those family and friends that did show up. In some situations, I was very surprised. I put effort into those relationships and have discarded those who did not show up.
As hard as it may be to hear what your husband is saying and possibly not understand your fear, I think he is trying to refocus you on the positive. When he says: "it is gone," I think he wants you remember that your cancer is gone. I cannot count the times my husband said the exact same thing to me over and over.
Keeping you close in my heart and in my prayers. You really are stronger than you know.
Love, Vicky
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hap - yes, it appears you are barely above the equivocal demarcation line, and your grade is less intense than most Her2+ tumors. It may be that you get more bang for your buck out of anti-hormonals. Have you decided which one you will be taking?
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lita, thank you for posting the link. I will need to get on my laptop and dig through the journal articles I have saved to find the actual article. I don't open my laptop much these days because it reminds me of work and takes me down a rabbit hole of feeling guilty for taking time off, etc...
There is so much information on so many variables, you could essentially find a study that leads you to whatever result you are looking for. That was a study I had stumbled upon on one of those sleepless nights and it was also around the time I decided to stop "researching" on my own.
The fact is, I don't want chemo or herceptin and I was looking for any data to help me justify not doing it. I don't want anti-hormonal either, but I will do it all (chemo, herceptin and AIs) for my children and because most of the data says that I should. One of the best things that came out of my meeting at Penn was that they acknowledged that they very likely are over treating many early stage breast cancers. It was what I needed to hear to justify my overwhelming desire not to do chemo.
I work in marketing for a medical device company. I've designed and implemented clinical studies as well as bench testing and I know how skewed results can be. In some ways, it makes me more skeptical of "the data" that is out there, but in others, I have much faith in he medical community to do what is best for their patients based on data.
I'm sorry if my comment about weak Her2 overexpression and herceptin's effectiveness caused anyone alarm. I am also weakly Her2 positive. I was equivocal on the ISH test and then +3.7 on the FISH test. It doesn't make me happy if I'm to believe the single study that was done on herceptin effectiveness on lower ratio tumors. I am more likely to believe the overwhelming data that shows that herceptin works really well on Her2 positive tumors.0 -
Coachvicky- congrats on the tattoos! I wonder if insurance will pay for me to get flowers or something wild tattooed on my foobs instead of nipples. Lol.
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the study that is cited in the bc.org page that lita referenced is the same one I had read early on:
http://jamanetwork.com/journals/jamaoncology/artic...
Ironically, I did a quick google search and turned up this study which says that hercpetin is less effective on early breast cancer with HIGH Her2 ratios:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0159176
Like I said, if you dig deep enough you will likely find a study that concludes exactly what you want it to. This is why I thought it best to stop doing my own research. Too much conflicting data!
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tough cookie and Hap -
Interestingly, the study that referenced high ratios not responding to Herceptin would not have included Hap or myself because the ratios were based on pre-2013 guidelines. We both have sub 2.2 ratios which was the cutoff for Her2 positivity at that point in time!
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Lita / ToughCookie / Hap / SpecialK, now I'm wondering if I need to bring this up again with my MO since I do fall in that ratio range at 4.3 and have 97% ER+ / 50% PR+. I've still recovering from my lumpectomy & haven't scheduled any treatments so far since I still have my surgical drain so I'm in this small window of time to question & change the plan if needed if there is some significant evidence against Herceptin & Taxol for me. It's almost cruel that we have to make decisions like this on top of the emotional & physical stress we're under and the clock is ticking!!
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I just noticed another thing in that BCO article - it states that Herceptin was approved by the FDA to be given "either alone or as part of a regimen with chemotherapy" yet everything I've seen thus far only has it being with chemo. Can it be given alone? My MO said if I weren't HER2+, I might not need chemo but had to have it in order to take the Herceptin since I am.
Is anyone aware of Herceptin being prescribed alone? I've seen one user who said she was on it alone because she couldn't tolerate the Taxol, but she was initially prescribed both.
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Vicky, Thank you for your encouragement, I felt overwhelmed today and you (once again) made me smile. I got a kick out of the large rear end comment.
Hap, Your strength after going through all of your cancers is amazing! Yes we will get through this, it just takes patience and may I add, support from our ladies here. No one truly understands unless they have cancer or some other life threatening disease.
On a side note ladies, I got out of the house today for an hour and realized how much better my mind felt with just a small dose of being outside and around others. I really needed to be outside of my mind in order to focus on the other things. I am a glass half full kinda girl BY CHOICE and in this party with chemo, I lost my edge or focus or whatever you want you call it.
Once again, thank you for all of your kind words, I feel like a part of an enormous, strong team with you all helping me to walk across the finish line.
Melanie
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Then when you add in this study about genetic testing that also describes a subset of HER2+ that appears more ER+ driven than HER2+ driven, it starts to look like they may be on to something. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41619...
Or, as several of you have pointed out, there's just so many conflicting things out there, it's easy to pick the ones that match your beliefs. Good old confirmation bias at work!
What's a girl to do?! Sigh!
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hap - your IHC testing initially was just north of equivocal - meaning that you had non-uniform or weak appearance in at least 10% of your cells. This caused you to need reflex (confirmatory) testing by FISH to confirm either positivity or negativity. FISH testing is more expensive and resorted to usually when IHC has yielded equivocal results. That test indicated 6.1 Her2 copy number - which is an intermediate score as far as copy number goes, but does push you into positivity for purposes of the test, and a CEP17 of 2.9 - positive for Her2, but still on the lower end of positives. I just looked at this study, linked, that indicated good DFS for lower ratio patients treated with Herceptin and who are >20% ER+.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0159176
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SpecialK - that is the same study that was discussed above by toughcookie.
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fleur - there is a current study NEOADAPT - linked below, with targeted therapy and anti-hormonals only, at Cancer Treatment Centers of America (one of our posters on this thread is a participant) which would play into the study you cited. Unfortunately, we are not there yet in the investigation of who needs chemo to drive effectiveness of targeted therapy, and who doesn't. The good news is that it is being looked at.
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Hap - Interesting article in The Oncology Nurse regarding a study that looked at the length of the Herceptin treatment period:
Still in the study stage but interesting!
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Hap, I think you're right! But at least they're activelylooking at ways to keep the benefits while reducing the harm. This article gave me a sense of relief as the reptilian part of my brain is quite certain that I'll have every single side effect of each and every treatment I'll shortly be facing... only partly joking...
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moodyblues, my husband is exactly the same and he reminds me: it is gone and we will make it through, the doctors are saying your chances are good. He wants to trust them blindly. We had a fight last time I saw an oncologist he thinks I am posing questions that make the doctors uncomfortable, take time, that could be spent to listen to them instead. It already happened several times and now I told him that if it would happen again he is not welcome to follow with me. He himself does not even understand what I am talking about, he did not read anything. But this is how some people cope with the things. Regarding those with the indelicate comments, just let them go, sometimes people can be just such schmacks and do not realize how they can hurt the others. I probably should not say anything, I am ranting here on the regular basis, hang in there, it will get better, it has to. Cherry
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Tresjolie, this is the most sad thing I heard today, I am so sorry she feels this way. I am just thinking that they do forget a lot in this age. My eldest does not remember much and sometimes her memories are incorrect, my youngest remembered a lot about herself being 3 years old when she was 5, told me about our trips and what happened in kindergarden, but now she doesn't, but she does remember our trips when she was 5. Of course, the trip is not the same as one's mom's serious illness but I believe it will get better with time. Is there any therapy for so young children, there must be, if someone else will explain to her that you will be around and that she has not to worry? I am sure you are telling it to her every day but maybe if someone else will? My councellour told me that my girl can come with me to the next appointment and ask the questions. Another oncologist that arranged the second opinion is one of my daughter's friends mom, she texted me that my daughter can come and talk to her if she wants. This breaks a parent's heart, I know. Cherry
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coachvicky, i admire your guts, I wish I had the same baldness. At some point I feel like my value as a person decreased when I got bc, that I cannot be compared to normal healthy people. I know it is crap, and I am discriminating myself, I used to have guts before, I need to get it back. People who know about my cancer are very supportive with a couple of exclusions, you are right that you see true colors in times like these. And we did not tell everybody maybe because I am afraid that some people will behave in a way I would want to punch them. That is why I decided to put some time and some distance between us. I have a friend who kind of stepped on me before my diagnosis criticizing my way of life when I asked her if she wanted to follow with us and stay with us for free in the house we rented for our vacation. She lives alone, she has a cronic illness, not life-threatening but a serious condition, we try to look after her, she is an old friend from university time. She replied that she could not afford to come to us because she just bought a new house but in the future she will have a lot of money to move where she wants meanwhile I am so far just has been spending my money on my travels. It was during the drive to the airport to pick her dad, she does not have a car. I did not say anything, but came home and told my husband: this lump I found, if it will turn I have cancer, do I care how much money I will have in the future. I love that we traveled a lot, I do not know if I will be able in the future, I do not know what my future holds for me, but I have so many sweet memories already. And it turned to be cancer. My friend has invited me twice to her new house, both times I replied I was sick. Her answer was: ok, get back to me when you feel better. She did not ask what it was. So far about colors. I am sure when she finds out she will tell her friends that it was due to my unhealthy life style, she is a vegetarian. Cherry
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Lita, thank you for the link on Her2 and Herceptin, I wrote down two questions for my oncologist based on this article
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Thank you Cherry. My husband (when I was first diagnosed) said I was researching too much, he felt it was not good for me (my mind and it's sanity) to keep looking and I should let the doctors handle it. I on the other hand wanted and needed to know as much as I could so that I could understand what I was up against, I had to tell him...you are you, I am me....I plan to do what will give me a peace of mind. I was ignorant about BC, totally ignorant because I chose to be, I mean it would NEVER happen to me right? What a surprise.
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toughcookie, well said about the studies, my sentiment exactly. There somewhere must be a study that suggests cancer came from space.
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Thank you Cherry. My husband (when I was first diagnosed) said I was researching too much, he felt it was not good for me (my mind and it's sanity) to keep looking and I should let the doctors handle it. I on the other hand wanted and needed to know as much as I could so that I could understand what I was up against, I had to tell him...you are you, I am me....I plan to do what will give me a peace of mind. I was ignorant about BC, totally ignorant because I chose to be, I mean it would NEVER happen to me right? What a surprise.
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Hap, seriously? Tell a librarian not to do research? That would be as futile as telling me to stop eating popcorn! (No butter, non-microwave, of course!
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Lol Vicky - love the nipples comment
.MoodyBlues, you're right about getting out. I find that when I go so far down my rabbithole, that going out and doing something helps. I'm not always good at it, but I try. You sound very strong...
Tresjoli, your comment regarding your wee one emphasizes the fact that kids are so unique - each person has their way of processing. She sounds very deeply sensitive - wow, so young to be tuned in in that manner. I'm not sure even how you'd go about it other than to reassure her. A counselor could be helpful too...
On the topic of Her2, here is my path report. Hoping someone can interpret for me (SpecialK?):
Her2 (Erbb2) by IHC results: Positive (score 3+)
Percentage of cells with uniform intense complete membrane staining - 90
Her2 (Erbb2) by IHC Primary Antibody: 4B5
There was some other mumbo jumbo about meeting the latest version of the ASCO/CAP Guidelines (Canada)
Does this mean anything to you? I think 4B5 refers to a testing protocol that they followed - it's not a measurement. And with 3+, that means I'm definitely positive, but I'm not told anything further about 'how positive' I am. Just know I'm not borderline (which would be something like 2+, I guess?). Sounds like you all get a lot more detail in the U.S. I got complete response after chemo (and I'm ER + 90%), so I've always assumed I was more Her2 driven...
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moodyblues, my husband is exactly like yours and I am exactly like you. I also told him: this is me having cancer, you so far have not read anything on the topic, what are you pms:ing about? Your only job is to be there for me when I try to understand how I shall interpret all this information and make an assessment about my chances for getting better. If this assignment is too much for you, I will do it alone, but I hoped that after all these years I will not have to do it, because the truth is I already am alone, your support is important but what can I do if you decide not to follow? I will continue alone and you will not be there to stress me. It seemed to do the trick, he has now promised not to say a word. And I said that he is allowed but only when he seconds what I am asking. But they mean well, and it will get better.
Just wanted to add, when I said all above I yelled a lot on the phone. Maybe I am getting my guts back. Cherry
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