TRIPLE POSITIVE GROUP
Comments
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Thank you for the information, Special K.
I have also had elevated levels easily by 50 points during chemo. I just finished my chemo last week and i have to see how the numbers will be in coming days.
My MO recommends Tamoxifen. Although i have read a lot AIs are better at preventing recurrences but it is post menopausal. Some MO recommend lupron shots + AI for pre-menopausal women. This Tamoxifen v/s AI seems like lottery draw to me, I do not know what will work. Also Tamoxifen carries uterine cancer risk.
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neeli, my wife is taking Tamoxifen. We asked the MO about the uterine cancer risk last week and she said it would be fairly small. per https://www.breastcancer.org/treatment/side_effects/endo_cancer, it also says: "According to the American Cancer Society, the risk of developing endometrial cancer from tamoxifen is about 1 in 500 — a small risk, but higher than that for women in the general population. Tamoxifen also slightly increases the risk of uterine sarcoma, a cancer that begins in the muscle of the uterine wall.".
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neeli,
I'm doing ovulation suppression (but Zoladex not Lupron) + an AI (Aromasin). I've been on this regimen for over four years. It gave me full-blown osteoporosis, but I'm now getting Prolia shots, so I've improved to osteopoenia. It gave me hot flashes and mood swings (gone, thanks to Celexa). But, at least I'm not as worried about endometrial cancer or uterine sarcoma. Tamoxifen or AI -- they all have their side-effects, possible problems.
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Continuing online research, I am very concerned about Crosstalk… I know I briefly mentioned it before, but now I am very worried.
The tumor is very high ER and PR, both in the nineties with the ER almost 100%. ICH was indeterminite
If my mother doesn’t reap the full benefits of endocrine therapy, I’m very worried, considering the percentages.
Are there any tests to determine? Does anyone know more information on this? Would the oncologist be able to help with individualized information?
Is the crosstalk a guarantee for +++ patients or is it something that sometimes occurs? If so, do they know the frequency?
Very worried about this…
Would ovary removal decrease risk in any significant way this cross talk potential? My mom is 52, so I don’t think early menopause would be a serious risk factor. She still gets her periods now though and my nana did not go into menopause until she was in her early 60s.
It’s still so early in this ordeal, but I’m afraid for the potential of ineffective endocrine therapy in the future.
Sorry for my scatterbrained question
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I feel safe in saying that the majority receiving neoadjuvent chemo actually see the benefit in the form of tumor shrinkage, quantified by imaging done at intervals and by palpation. If tumor size is thought to be reliably documented at treatment inception, achieving significant shrinkage or pCR at surgical removal bears out the efficacy of treatment. Enough patients see this type of response that treating this way is definitely not futile. Are there some who won't respond - yes, but they are few. Are there some who respond but recur later - either Her2+ driven or estrogen driven, yes. Does this happen to everyone, no - statistics show increased survival with this standard of care. I don't think we are at the point of testing to be able to personalize treatment plans based on levels of estrogen and HER2, and I don't believe testing exists to determine who may experience resistance, but I think it is more common in lengthy treatment such as for more advanced stage patients. There is no denying the benefit of current treatment practices for early stage patients and advanced stage patients alike, and in the time since the HERA trial advances have been made with new chemo drugs, additional targeted therapies, and innovative surgical and radiation techniques.
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1207262 - In many ways, diagnosis is the scariest time as there are so many questions. My understanding is that the chemo and Herceptin is used to treat the HER2 and the AI's or tamoxifilin is used to suppress hormones, progesterone and estrogen. (The pathology report on my HER2 status report wasn't even back until after both surgery and radiation. I though I was going to MO for AI prescription). I am not following your conclusion that chemo would be futile. I am glad I did both Herceptin and AI's. If your Mom is choosing chemo, she has time to think about her hormone suppressor. And she can consider whether she wants a total hysterectomy so she can take AI's and not worry about uterine or ovarian cancer or other SE's of tax. (I had one at age 37 for a non-cancer reason and have never sorry. My sister bled until she was 60 like your grandmother).
Sadly, none of us knows if we, and not someone else, are the 1 in 100, or 20 in 100 or whatever for a treatment protocol is chosen. We can choose to follow a recommended protocol or get a second opinion or walk away. While having an involved support system is vital, in the end it will be her choice. I hope you are able to attend her appointments as she thinks through all of this. Your questions and her doctor's answers may make both of you more comfortable with what's next. And as I said when I started, once a treatment plan is in place, it's a little less stressful. Stay close and get her here too.
Taco
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Hi Taco and SpecialK,
I think you are right about the diagnosis being the scariest part. The waiting for results was horrible, but this is awful as well. That's crazy you didn't even know you were HER2+ until after surgery! That must have been a shock.
My concern is based on the study I linked that said that low FISH scores and high ER positivity (my mom's is close to 100%) makes Herceptin rendered almost useless. This shocked me to see! When I saw that in conjunction to the studies that say that the crosstalk between HER2 and ER/PR receptors can inhibit endocrine therapy effectiveness I became very concerned and about the lengthy treatment in regards to resistance is if one is on endocrine therapy for five years to a decade and is or was HER2 would this contribute?
My understanding was not really so much on the chemo (but I've read that ER/PR tumors don't fare as well to those usually, either), but to my knowledge the chemo is combined with Herceptin in the neoadjuvant setting (I could definitely be wrong, I'm still pretty new to this!). So, I was worried about that effectivity based on the comments Breastcancer.org's post discussed, then, again, combined with the potential resistance to estrogen inhibition based on HER2 receptors' crosstalk. (It could very well be I am misinterpreting any of this, just trying to understand it all can be intimidating.) Whereas this study (published in 2016, the same as the one discussed in BC.org's linked study) seems to contradict https://www.ncbi.nlm.nih.gov/pubmed/27009140
Of course everything will be up to my mom in the end, no question! She just has expressed many times she wants to do the most preventative measures possible to do her best to never recur, even if the benefit derives only 1%-- she wants it! Getting her on an online forum, unfortunately, I don't think will ever happen hahaha. She also firmly trusts the doctors at their word and isn't one to question them. Of course I trust these doctors, too! They're among the nation's, and likely world's, finest, but I think that questions for them and staying alert about everything is also a good thing. She doesn't want to, so I'm trying to do it for her-- and out of worry, too.
I think I might be reading too much at once and scaring myself or overwhelming myself because while I have a grasp on these concepts, I am by no means equip to completely comprehend the details of full medical analyses…
Again, thank you all so much for your patience and thoughtful replies. It means so much! I very much appreciate your helpfulness and kindness and admire your knowledge and intelligence!
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120... - worst case scenario, the herceptin would be useless but the chemo would still be effective. I was also low Her2, high ER+ and my MO's reasoning was that Her2+ cancers are so aggressive that it is best to fight it if there is even any question that it could be Her2+. Herceptin is relatively benign as far as SEs go. I'd do Herceptin and Perjeta again, no problem. I did not get PCR after neoadjuvant chemo but my post surgical pathology showed "probable or definite response to chemotherapy" compared to my pre-chemo biopsy.
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I have a question, please. A friend sent me information on the Budwig diet (flaxseed oil mixed in cottage cheese or Greek yogurt and flaxseed hull lignans). I found a capsule that contains this and ordered it. My friend's mom is a BC survivor at age 94 and used this. This is considered alternative treatment, and I am not looking at it in that way, I have had chemo, surgery, radiation and now autoimmune infusions. Just looking to improve my health and chance of recurrence. She also mentioned bitter melon concentrate capsules. Would anyone please have any information on this to share? I have been reading old posts on other threads. Thank you, Lisa
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Here's a look at some research on flaxseed:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808339/
Bitter Melon Extract:
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Thank you so much, Inger!
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thanks guys
I shall stay calm and carry on! 0 -
Has anyone had Latissimus doors breast reconstruction where they take the muscle from your back for reconstruction. I hear some bad results from years of pain from losing that back muscle.
Cannot do tummy or elsewhere and above is what they suggested.
Any words of advice.
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Hello Ladies: just started Kadclya yesterday. First infusion was over 90 minutes and next ones will be 30 minutes because I didn't have any problems. #1 of 14 infusions and did about 11 Herceptin.
Bone pain can happen from the Letrosole
Im feeling tired today is all....but also after the 30 rounds of radiation it never got me feeling "back to normal".....kind of forgetting what "normal" is....though yesterday I did get in a long bike ride....that was great (obviously before my treatment)
Kathielen: how did the Latissimus dorsi reconstruction work for you? Im thinking about it??
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MissouriCatLady - question plz - what is "autoimmune infusions" that you are taking? I have 2 auto immune diseases - curious what is out there to take. Thx
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Coutca04,
I was on Kadcyla for 8 treatments and I found that if I did the treatment for a shorter period than 90 minutes I had worse SE's such as joint pain,
bowel problems, and the like. I even had issues with breathing and had to use my inhaler multiple times a day. A good friend who was an
Oncology nurse in the office where I go to see my Oncologist confirmed that if you slow down the infusion you have fewer SE's.
Angelsgal
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1207262- like you, I initially read every HER2+ related research report I could find and went into a bit of a tailspin because of what I found. I fixated all the negative aspects like HER2/ HR crosstalk etc (although in my case I think I was looking for valid reasons to NOT do chemo). I met with a breast surgeon who basically insisted in no uncertain terms that I do neoadjuvant chemo, and when I confronted her with the negative research I'd done, she said that in her many many years operating on HER2+ patients who underwent neoadjuvant chemo, almost ALL of them had significant shrinkage of their tumors, and many achieved pCR. I was looking at stats that said only 26% of HER2+ plus HR+ saw pCR after neoadjuvant TCHP (whereas 63% of HER2+ but HR- saw pCR), but I think it's important to remember that ultimately chemo is just one step of the process; the goal of neoadjuvant chemo is to shrink things down enough to get nice clean margins in an aggressive cancer (& to "test" how responsive the cancer is to a particular chemo regimine), not to "cure" the cancer- surgery will still happen no matter what (not to mention the options of radiation and endocrine therapies). And as mentioned, if the Herceptin ISN'T effective on your mom's low HER positivity, there's still the other chemo given alongside it.
I am in the 90s on both HER2 and ER (so not exactly the same as your mother), but after only 2 rounds of TCHP my I had significant, palpable shrinking and softening in my large main tumors and affected lymph nodes, so I know for me it was "worth it" to that end even if don't achieve pCR. I'm still weighing the cost/benefit ratio of hormone therapy, obsessing about HER2 positivity affecting the efficacy of tamoxifen. But if your mother is wanting to do every single thing she can regardless, then she'll do that therapy as well, because for now these are the best options they can offer us, even if they aren't always as effective as we'd like. I believe I read that the long term HER2 crosstalk is MORE likely with tamoxifen vs AIs plus surgical or chemical ovarian suppression (someone correct me if I'm wrong), so that might be worth exploring?
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120760 - SpecialK is the expert on the research and I will defer to her on that. It is overwhelming. My HER2 status was a shock but I am also glad that my doctors moved my treatment along quickly. Biopsy didn't show the HER2, just the post-surgical path report did. I feel very fortunate to have been able to have balloon catheter radiation which uses the surgical cavity so it has to be done almost immediately post surgery. Three weeks post op I was already done with rads. I admit (being married to a retired physician) that I am generally trustful but my team has taken the time to answer all my questions. Treatment protocols are changing rapidly and a major medical center will have to keep up. My personal experience with other medical issues is that I want a physician who is not too far out of residency - DH had two very bad surgical experiences when he trusted the head of the department as did a stage 4 friend. My MO has been especially supportive and has helped me find the AI that has the SE's that are manageable for me (and it does seem to vary). And the communication between primary, BS, MO, and RO has been seamless.
I continue to hope you are close and can go to at least the early appointments with your Mom. A second listener is really important when we are in the fog of recent diagnosis. She is lucky to have you as an advocate.
I'm sorry you can't get her on line. My "starting chemo Feb. 2017" group set up a private facebook chat room and have become VERY close even though our diagnoses were varied. We have both laughed and cried together and have been able to share more pictures that way.
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Ok....I'm wondering how many have been on Al's longer than 10 years & any serious side effects and how long?
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rljes - autoimmune drugs I am taking, just Herceptin and Perjeta. MO asks that I stay on these for a total of a year. These drugs were a part of my chemo TCHP treatments. Hugs to you, Lisa
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So, Triple positives are considered Luminal B
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taco - thanks for the compliment, I think we all have much to contribute to this thread - hard won experience and research - I am constantly learning from everyone here!
lulu - triple positives can be Luminal A, Luminal B, or ERBB (Her2+
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Hey ladies, how do most womenhandle radiation? What are some of the major side effects?
Thanks! Julia
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JKeet-
I was terrified of doing the radiation. A friend at church's mom had terrible burns. So being the worry wart I am I was convinced it was going to be awful. I went into the first appt praying that I wouldnt freak out. Laying on the table was kind of like being on an altar and I remember someone on this board saying to me in a post that it is an issue about surrendering your will. So I just laid there and surrendered to the treatment and prayed every day that I could handle the next one and the next one until the treatment was over. I did the Calendula cream and the Aloe Vera Gel and I had no negative side effects at all. No burning or sunburn or even pink skin. Two weeks after treatment was over I was still waiting for the negative side effects to show up and they never did. It was as if I hadnt even done the treatment at all.
The only that I can think of that may have made the difference besides praying my guts out every day was that I was taking Immunocal a whey protein shake that builds the cells glutathione, a detoxifying antioxident our body makes in our cells. I had to stop all other supplements, vitamins until the treatment was over.
AngelsGal
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Jkeet - I finished my rads 2 weeks ago. I had 2 serious burns: one near my clavicle and one where my breast and underarm meet. I'm a full figured woman with big breasts. The burns happened where the skin folded as I laid back on the table.
My burns really blossomed after the 4th week of treatment. I finally got some prescription silvadene cream, and that helped me heal. I was pretty well healed up by last week
Treatment itself is generally easy, if tedious. I just wanted the 30 treatments to be over!
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Jkeet--I just kept slathering on a variety of creams--calendula, Aquaphor, Desitin, . . . and only had minimal skin impacts. I did end up with a few days of fatigue both times--not regularly, and really only a couple of days. It seemed to be tied to when I'd had a really active day the day before. (During my first rads we were getting the house/property ready to host a wedding--aiyiyi!!) The treatments do go really quickly and the techs are wonderful people. You'll likely check in with your RO once a week, but the daily schedule makes it all go really quickly--every week you have five more behind you!
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Jkeet - I had fatigue and the center of my chest was pretty meaty looking by the end. It didn't hurt but it itched like crazy and went away a couple weeks after the end of treatment. I'm almost a year out now. The pec was tight for a long time and I had to do PT exercises every day but it is a lot better now, I started a light weight lifting program and that did wonders for the tightness, which is counter-intuitive to me. I've had some capuslar contracture in my implant, which I wanted replaced anyway, and since replacement it is much better but the rads side still sits a little higher than the other. The skin on that side is still thicker, darker, tougher and apparently thinner compared to the other side. All that being said, if there was one treatment I wish I could have skipped, it is rads. Chemo was it's own beast, but I have no lingering side effects from that.
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my doc prescribed me letrizole. I am so worried about side effect that I read that I bought the original (fenara) and not the generic. The price of the original is more than four times higher than the price of generic. Anyone had generic letrozole and is there difference in anything between the two?
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my doc prescribed me letrizole. I am so worried about side effects I read about that I bought the original (fenara) and not the generic. The price of the original is more than four times higher than the price of thegeneric. Anyone had generic letrozole and is there difference in anything between the two?
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