TRIPLE POSITIVE GROUP
Comments
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Tom, that's how I understood it also, your fat cells can turn into estrogen, the dr explained that,, and if the receptor attaches to it, it can mutate to become a cancer, thus possibility of the recurrence. So why it does this, they have not said, or they do not fully know? Or they are still trying to analyze this? Maybe there is another factor? Just hoping and praying for the best! Trying to learn as much as I can also. One thing MO told me was that I was cancer free because of the surgery, the chemo is the extra insurance and the antigen for the
Her2+ is their options right now. I am guessing diet and health play another major factor in this fight.
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I've been on arimidex for 5 months. The hot flashes are improving, but now I'm getting some joint pain when I first wake up. So far its not too bad. This week O started getting leg cramps. Are they from the arimidex too?
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I am getting 17 total herceptin infusions. This includes the 6 that came with chemo and perjeta. Not sure if this is standard for all.
Special K, thank you for your concise explanation of our cancer. Excellent!
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debiann - have you had your potassium levels checked? You can get some cramping if they are low - or try supplementing with some OTC potassium and see if the cramps stop. I have heard of others getting cramps while on an AI - I have had more tow and foot cramping than I used to.
jenifer - you are welcome! I am a Cali girl too! I also got 17 - 6 with chemo and 11 H only. I was treated too early for Perjeta. Some get 52 weekly infusions, some get weekly for as many Taxols as they get (four DD, some get 8 or 12), then convert to every three weeks, others get Herceptin with chemo for however many infusions they have, to complete with 17 or 18 - others have to stop due to cardiac SEs - but here's hoping everyone who had to do that got benefit form the Herceptin they did receive!
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My potassium dropped way below after first chemo/hercepton and was told to get it in veggies and fruit. Potatoes being the highest, Lima beans next and a whole list more, but I do know that thet supplement with IV potassium and or magnesium. So have levels checked and hydrate more more more....
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chrissie29 Yes right after my exchange. It was just fat. My oncologist felt it too and she said that if my PS didn't know what it was I should see my BS to have it checked out.
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sometimes I sleep like a log, but other tomes not sure if I have slept at all? I am not on arimadex yet, and I won't be on tamoxafin because of issues I have! Have any of your doctors suggested melatonin at night to help sleep? Also for night sweats, Evening primrose oil? They are both natural and the melatonin works for me, on those nights I can't get to sleep.
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jersey - evening primrose oil may be estrogenic, or when sold commercially combined with other estrogenic ingredients. That may be enough for some to avoid it, although I don't think enough conclusive evidence is currently available - just like with all phytoestrogenic items/products. My BS definitely recommends melatonin, and in pretty stiff doses (10mg) that you work your way up to, and there is some thought that depleted melatonin levels in the body contribute to breast cancer. I know some experience vivid dreams when they take it.
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no primrose oil anymore, but I did take when I was having hot flashes, years ago, hmmm. As for the melatonin, I stay at 5 mg but I have on occasion had some vivid dreams, will have to look to see if there is a connection on those nights I take it, it's not an every night aid yet.... So if the dreams come up, will note it. Definitely very vivid nightmares with Vicodin, and some with Percocet, don't take those anymore, I would have to have my arm removed to use those ever again...
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I've been taking melatonin 10mg for quite some time and my dreams are like watching movies all night.....0 -
I love melatonin- always wake up feeling very refreshed.
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So what does a triple positive gal do when on a road trip? Read research of course (since polishing my toenails turned into a mess...haha). Pasted below are the highlights from a Deb 2015 retrospective review focused specifically on triple positives. The link to the full article follows the highlights. I like it because it breaks down the specifics of triple positivity between mbc, early stage, advanced, etc. Spoke to resistance to hormonal therapy as well as trastuzumab and how timing of tx may overcome that resistance. Very interesting to see us as a specific HER2+ subtype and my overall perception was triple positive is a great place to be!
- •HER-2, ER and PgR have a key role in treatment decision making in breast cancer.
- •Triple positive (TP) tumours exhibit a unique clinical and biological behavior.
- •TP breast cancer behavior might be also driven by HR status.
- •TP tumors with low disease burden and high HR expression resemble luminal tumours.
- •The identification and characterization of this subset may avoid overtreatment.
- Abstract
- Breast cancer is a heterogeneous disease, and within the HER-2 positive subtype this is highly exemplified by the presence of substantial phenotypical and clinical heterogeneity, mostly related to hormonal receptor (HR) expression. It is well known how HER-2 positivity is commonly associated with a more aggressive tumor phenotype and decreased overall survival and, moreover, with a reduced benefit from endocrine treatment. Preclinical studies corroborate the role played by functional crosstalks between HER-2 and estrogen receptor (ER) signaling in endocrine resistance and, more recently, the activation of ER signaling is emerging as a possible mechanism of resistance to HER-2 blocking agents. Indeed, HER-2 positive breast cancer heterogeneity has been suggested to underlie the variability of response not only to endocrine treatments, but also to HER-2 blocking agents. Among HER-2 positive tumors, HR status probably defines two distinct subtypes, with dissimilar clinical behavior and different sensitivity to anticancer agents. The triple positive subtype, namely, ER/PgR/Her-2 positive tumors, could be considered the subset which most closely resembles the HER-2 negative/HR positive tumors, with substantial differences in biology and clinical outcome. We argue on whether in this subgroup the "standard" treatment may be considered, in selected cases, i.e., small tumors, low tumor burden, high expression of both hormonal receptors, an overtreatment. This article review the existing literature on biologic and clinical data concerning the HER-2/ER/PgR positive tumors, in an attempt to better define the HER-2 subtypes and to optimize the use of HER-2 targeted agents, chemotherapy and endocrine treatments in the various subsets.
http://www.sciencedirect.com/science/article/pii/S0305737214002102
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Had my new lump checked out by the BS. She did an US and felt it was a fatty necrosis, but she is going to see my back in a month to recheck it-sooner if I think it is changing. I asked about a biopsy but with recent radiation, she was fearful that a biopsy site wouldn't heal. Thanks again for the ladies who gave me info on their experiences.
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Blownaway, yes we do have similar problems! I am almost 3 years out of chemo and about 2 and a half from starting Arimidex. I take mine in the morning and don't have trouble sleeping. I did t the beginning. Also I have joint aches but you tell me if it's from my bad genetics, osteoarthritis, other es or the AI! LOL who now. I take Tramodol for pain daily. I get through. I have low magnesium levels and try to keep them up with food and supplements. I take 4 magnesium tablets. Don't try this at home- too much magnesium causes diarrhea! I was on 6 a day for a while and didn't leave house.i got infusions of magnesium almost monthly up till December! That's one reason I still have my Port.
Someone was asking about bumps in the surgical area. Mine was a fat infiltrated node. They did a US on it. Then the mammos tech came in and said they could do one on my remaining tissue if he doctor wanted it. LOL. BMX or not. LOL! It was removed at my TE placement surgery. That one was as big as an egg. Talk about scary.
Much love to all.
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Thanks so much for the article, mom2boys, it really highlights the importance of the anti-hormone tx for us.
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Prior to my bc dx I avoided caffeine because I was told it contributed to my cystic breast condition. Now that I've had an mx, is there any reason for me to continue to avoid caffeine? Does it have any other effect on cancer or treatments? I love geen tea and would enjoy having a cup or two everyday.
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when will my period come back
it's so stressful waiting and waiting for it to come back!! my last chemo session was september 29th, 2014. i had my injection for 3 months of zoladex (puts ovaries to sleep) the end of july 2014. i just want it to come back so i know children are in my future 
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running , did they tell you your period would come back? I was under the impression that it might not come back.. If your body produces hormones then the receptor might attach to another cell and then that could mutate again into another breast to our BUT talk to your DR. I could be wrong...
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runningcello, your ovaries might still be asleep. Your OB-GYN might be able to wake them up with Clomid or another infertility treatment. But, infertility treatment might be full of the very hormones you're supposed to be suppressing to avoid recurrence. I do know that some women do have children after BC; I guess you need to talk about how to do that safely with MO.
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I know there are risks involved with trying to get pregnant after hormone positive cancer.. But it would be after I complete my 5 years of tamoxifen which hopefully by then will be alright. In terms of period coming back, because I'm only 25 I just assumed it would come back since I'm so far away from menopause .. The chance of it never coming back as a result of chemo is possible I just hope it will
i do know any hormone stimulating drugs from infertility are a no go but my oncologist seemed confident that my period would come back0 -
runningcello,
My body stopped ovulating when I was 34; there was a test my OB/GYN ran to determine that. I ended up on Clomid, and got pregnant with the twins. After the Clomid, my body continued to ovulate on its own and I got regular periods.
Why not ask your OB/GYN to run some tests on you? There might be something other than Clomid to get you ovulating again.
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Femara is actually used off-label as a fertility drug in non-postmeno women. If you google "Femara as a fertility drug" there is a bunch of info.
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runningcello you might want to read this:
Pregnancy after breast cancer / American Cancer Society0 -
a very helpful article. I will be speaking with my oncologist next Tuesday to go over these concerns
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runningcello print out the article. S/he needs to see the source and read. American Cancer Society it usually considered a decent source.
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running - a friends last day of chemo was July 16th, she got hers last month, BUT she didn't have any shots. We all are different, and I feel your want/need for it to return. Sorry my magic wand doesn't work anymore, or I'd wave it for your period to return. Waiting stinks!
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Runningcello, don't panic yet. It takes time for your body to bounce back. I'm 42 and my period returned four months after chemo ended. Unlike you, I was really hoping it would never come back.
I had my first OS shot Wednesday. The shot didn't hurt like I thought it would. I figured as soon as we hit the Florida line today, the hot flashes would start. No far I'm in the clear. My MO decided to start me on Arimidex instead of Exemestane because the cost is much lower. I'll start some time in the next ten days. I sure hope I don't have too many side effects
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thank you all for your helpful feed back.
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Hi Ladies.
Apologies for my lengthy absence. I have read several pages--with many more to go. Welcome to the newbies--but sorry you are joining.
Who can relate to "I am so so done with this!". The past several months I have been losing the battle of keeping my blood counts at an even tolerable level. Despite enough oral iron to rust my innards, oral B12, eating red meat (provided by a good friend who grows their own-no hormones or antibiotics), and I actually ate the red meat--didn't just cook it. To no avail. Had testing and testing-nothing. Counts kept dropping. I was hardly able to keep my eyes open. Short of breath as bad as the lowest herceptin induced heart failure.
My MO (who is moving in June-more on that later) whom I adore and have a delightful relationship--turned in to a bossy bucket and began with "We will do things my way.....". Generally I would have argued in principle--but too tired. He said we would continue the what caused later and start fixing. I began injectable B12--a long intense course. Tuesday I had another port placed. It was almost a year to the day since I had the other removed. Since I had bilateral mastectomies and nodes-and now have crappy veins--and more-the port was not optional. Wednesday I started infusible iron in an ambulatory care center. I will continue that for another 5-7 weeks every week. Got to drop the oral iron--was not being absorbed anyway. I was planning to turn into super woman before the infusion finished. Not quite. Apparently it is not an instant fix
Despite being a nurse since the dead sea was sick-I had never administered IV iron. For those unaware--it looks like molasses. Due to my history of reacting to everything--I was given it over an extended period of time and watched like a hawk. I have always been pale--but you can now almost see through me. Port had to be placed on my right as my left had too much scar tissue. It is taking some getting used to on my dominant side. But--I will probably keep this one forever. My dear MO is moving to Wisconsin in June. Maybe Appleton. I will check for anyone in the area needing a dynamic MO. His wife has become a friend also. I will miss them on several levels. But-so understand. They have small children and want to be in an area with good schools and even better values. Mid-west is certainly a good choice. He has been here about 10-years.
And now. For those anxiously awaiting an update of the @$$^%$@!! ex-husband. No. The property settlement is still hanging--but better for me. He finally got most of his crap out of the house--but not garage. AND--drum roll---he finally got someone to marry him so no need to be on guard for a previously morbidly obese not gaunt crazy man trying to spread his--whatever--via his penile pump. Bless her heart. If he follows his typical path--he will be on the prowl by summer. I ignore the text messages wanting "help" with his chronic medical.
I have missed more work with this recent setback than any other time since the beginning of the windy road. Some days I just can't get there until close to noon. Other days I actually left early. And--have gone back to a short (or long) nap on occasion in an empty clinical room. That has certainly helped the insomnia with Femera! But-am still going to work.
My sweet grand turned 1 Friday. I didn't get to to to the celebration. Two weeks before I drove to Boulder to see my youngest. The drive is about 7.5 hours each way. Flying is almost longer. By the time I got back I was beyond exhausted. The altitude change impact was severe. So it was--lets say recommended--I stay put. I had plans to sew, quilt, refresh my memory on smoking (that seems to be competely gone), read, and do CEUs. Nope. Slept any time I was not at work.
I have visions of the old children's toy--with shaved magnets on a mans head and another magnet pen to move the shavings around. Am wondering if I get a magnet......
Much love to all.
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oh susan sweetie, i was falling asleep last night thinking of you, reading here and missing you. i am so glad you are checking in, and i have a big magnet for you...
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