TRIPLE POSITIVE GROUP

knmtwins

Time of Day - Taking tamoxifen - Anyone else want to chime in. Blown and I take it at dinner and have trouble sleeping. Is there a secret time to take it?

Mommato3

I take mine at night and don't have any insomnia. I don't usually sleep through the night but that's been happening for about four or five years. I wake up and can fall back asleep fairly quickly.

PMR53

Thank you Special K for breaking all that down again for us Triple Positive BC Ladies. You explained it very well. Do you know what is the number the MO would like to complete on Herceptin?

Patty

Poconos3

I was on Tamoxifen for 1 1/2 years and three months ago the oncologist put me on Arimidex; Tamoxifen was so much EASIER. Terrible, terrible, did I say TERRIBLE Joint Pain! In addition, foot cramps, and nail beds softer and nails peeling like when I was on chemo

chrissie29

Fluffqueen and Bren58 - thanks for the info.  I would feel better if someone could do an US so I will ask the BS about this. 

I take Tamoxifen in the morning and sleep ok so far.  In fact, I had a colonoscopy on Tuesday at 11:30 so after came home and slept another 4 hours until 6:30 because they had to give me extra sedation.  I was still able to go to sleep at 10:30am.  I do notice though I wake up to go to the bathroom so not sure if that is related to the Tamoxifen.  I was waking up with chemo but not after that ended.

 

Kthielen

I have been taking 10mg in the morning and 10mg in the evening per my MO recommendation. I feel I don't sleep great, have night sweats and probably up every 2-3 hrs

SpecialK

PMR53 - do you mean total number of Herceptin infusions?

Jerseygirl927

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.

debiann

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? 

JeniferE

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!

SpecialK

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!

Jerseygirl927

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....

lago

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.

Jerseygirl927

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.

SpecialK

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.

Jerseygirl927

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...

Blownaway

I've been taking melatonin 10mg for quite some time and my dreams are like watching movies all night.....

momwriter

I love melatonin- always wake up feeling very refreshed.

mom2threeboys

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

chrissie29

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.

Moonflwr912

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.

debiann

Thanks so much for the article, mom2boys, it really highlights the importance of the anti-hormone tx for us.

debiann

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.

runningcello

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

Jerseygirl927

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...

ElaineTherese

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.

runningcello

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 back

ElaineTherese

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.

SpecialK

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.

 

 

lago

runningcello you might want to read this:
Pregnancy after breast cancer / American Cancer Society