TRIPLE POSITIVE GROUP

KateB79 · August 2015

I have an odd, slightly personal, and maybe TMI question.

My menstrual cycles have always been clockwork. Every 28 days, boom. And now ... Nothing. I understand that TCHP will likely put me into chemopause, but so quickly? (I was expecting my period this past weekend.) And given how menstrual cycles work, where does the accumulated endometrial lining GO if it doesn't come out?

Thanks in advance for indulging my elementary biology question.

TonLee · August 2015

Hey Kate,

My period stopped but resumed within 4 weeks at the end. With a vengeance! I can't speak to where the lining goes except from what I remember, the lack of estrogen keeps the lining from forming. Like an 80 year old woman type thing.

Also, someone telling you to eat more cottage cheese? hahaha...Tell them they need to read the "China Study." It's an entire book devoted to why the protein (casein) in cow's milk causes cancer. That'll shut'em up. While I think food plays a role, I don't believe for a second that it's as primary as some of the stuff I've read.

Also, regarding the belly shot...lol. My Onc said "You're young, healthy, er, and let's just wait and see." 5 days in the hospital after the first chemo because I spiked a fever. Everyone in suits, omg, thought I was going to DIE of boredom. (So at night I ran up and down the back stairs to keep active.) I then took the shot (gave it to myself in the belly at home) every treatment after!

Hercecptin headaches are a real thing. I got them every single time...but my infusion time was less than 30 minutes.

I LIVED on FAGE yogurt while in chemo. You must not only keep up protein but GET MORE to offset the chemo destruction.

Lago, I do remember thinking I would get mets. And I won't go so far as to say I won't. Tempting fate and all that....

ElaineTherese · August 2015

Kate,

My period stopped two months or so after I started chemo. It did not resume after chemo (last chemo: 12/3/14), and now, I'm taking an ovulation inhibitor (Zoladex), so it's gone. I think that chemo and Zoladex interfere with the whole cycle and that the endometrial lining stops building up. That's just a guess by the way; my Ph.D. is in political science not biology!

Gretagirl · August 2015

QUESTION how do we know the herceptin has done its job in killing the HER2? I don't think I am understanding this.

QUESTION the herceptin has to have the chemo to be effective?

I know I asked MO about this read through notes but can't make sense of what I wrote.

KateB79 · August 2015

ElaineTherese, my Ph.D. is in American Literature, so I'm right there with you.

KateB79 · August 2015

TonLee,

People come up with things to say/do because they want to believe that this will never happen to them. But, yeah, the cottage cheese thing threw me for a loop, especially given the studies on casein.

Here's hoping I don't end up running stairs in the hospital! I'm tracking my temp today through day 10 (nadir). So far, so good. Fingers crossed.

zjrosenthal · August 2015

So ladies I am not triple positive but 2 out of 3 ain't bad. Teehee. Hope you all don't mind my being here. I finished chemo in January. It was rough but you can do it. Just on herceptin / perjeta now and femara. As far as the menstrual cycle question, no estrogen=no lining buildup. BTW, my major was in health and physical ed. Masters was in Health Ed. Retired from 39+ years as a Health and Phys Ed teacher in NYC. Love, Jean

lago · August 2015

Kate my last period was 2 weeks before chemo. Like you I was like clockwork. It took me about 2 years to stop looking for my favorite tampons on sale

zjrosenthal IMO if you are HER2+ and E+ you are treated the same as triple positive. You are not the only one here that isn't P+. Matter a fact I'm only 5% P+. Not unusual for us HER2+ gals to have low hormone positive percentages. My ER is only 30%

Stephmoen · August 2015

Zjrosenthal welcome! May I ask how you got perjeta all year long I'm trying to get this my mo thinks it's overkill I say more the better

geewhiz · August 2015

Welcome zjrosenthal!! My name is Jean too : )

MMay · August 2015

Kate- I have been having some bleeding ever since my first treatment. It is minimal but there is always something. My last real period was a week before my first treatment. I as well got it like clock work. So I am glad you brought it up. I wondered to if it would stop that quickly.

I received a neupogen shot yesterday as my WBC plummeted. Did not hurt at all. The nurse warmed it for me and I had her give it in my belly as recommended on here! So far no pain knock on wood. I get another today. Had to stay home from work due infection risk. Bored...don't like sitting here with all my thoughts. Thanks again for the direction with the shot and well every thing.

RobinLK · August 2015

Hello compatriots! Between a rock and a hard place here. My tamoxifen vacation comes to a close tomorrow and I have a big decision to make. None of my choices are very pleasant, especially since I have 9 years to go.

A: back on tamoxifen and continue with the crippling pain, lack of sleep, inability to lose weight(up 45 lbs in 15 months), foggy brain(zero short term memory and inability to focus or concentrate) etc... and take even more medication to deal with above side effects( which in turn come with their own side effects needing medications)

B: ooph and AI - see side effects above and add osteoporosis (which I already have and is stable) <---leading to more treatment/medication (already failed orals)

C: ooph and stop hormonal treatment - not recommended by MO

stop hormonal treatment - least liked by everybody but me

I have LOVED this break. Almost all pain has dissipated. I also recognize myself, I am back to being chatty and perky. I am able to exercise without painkillers. It has been a blessing.

Today I met with a rheumatologist regarding the pain issues. I kept the appointment because I know I will need this doctor in my arsenal when I make my decision. The medication he gave me will also cause me to gain weight, and I do not want to take it, but my options are limited by my medication allergies.

I really have no idea which option to choose. I am thankful that I am still vertical, but what good is being vertical if you are suffering from debilitating pain. Quality or quantity....MO feels that stopping treatment for me would be a when it returns vs. if it returns.

Thanks for letting me rant.

ElaineTherese · August 2015

Hi!

I guess I fall into category B (though I'm taking Zoladex instead of getting an ooph). I already have osteopenia, but otherwise, I suffer few side effects (hot flashes, moodiness -- addressed with Celexa). Have you tried an AI? You may not get the same side effects that you have with Tamoxifen. Moreover, some ladies have switched from one AI to another and have seen their side effects diminish. What percent was your tumor ER+? That would be a factor for me. (My tumor was 95% ER, 95% PR.) Best wishes for making your decision!

txmom · August 2015

Hi Robin, I'm not sure what you mean that you have 9 years to go but being that I'm a lifer, I would do whatever I could to not cross over to stage iv. Once you are a lifer you are give a 3-5 year prognosis and there is never a break in treatment or pain. Your decisions are really tough but I'm sure you will make the best decision for you. Hopefully the others can give you some guidance. XO

CassieCat · August 2015

Kate, my period was clockwork too, and my last one was just before my first chemo. Now it's been a year, with no sign of it.

Coming off the steroids was terrible for me - the emotional crash was awful. My MO worked out a plan for me to taper off of them, and that helped. I hated the steroids.

SpecialK · August 2015

robinlk - I was surgically post-meno at diagnosis, so started on Femara - had joint pain, weight gain and trigger thumb, switched to Arimidex, had less joint pain, did not lose weight, triggers dissipated - but after a year developed triggers and a swollen knee - still no weight loss despite trying. Switched back to Femara, different manufacturer, and started an anti-inflammatory diet. Dramatically reduced joint pain and lost 22 pounds - weighed less than before diagnosis - yay! The diet has made a real difference in both the ability to lose weight (I had previously tried exercise 5 days a week and 1,200 cals - couldn't move the scale) and the joint pain - it is a hard food plan due to the elimination of so many things, but I am gladly trading them for a better daily pain situation and staying on my AI.

lago · August 2015

RobinLK suppressing your ovaries with drugs so you can take an AI instead of ooph wasn't an option? I mean you can always do an ooph later

edwsmom · August 2015

Hi.

Brand new to this group. Happy to have found you and to have the opportunity to talk with and learn from others. I'm a 43 yo mother of a 2 year old.

I found out my diagnosis last week. Biopsy last Monday. Results back on Wednesday. Appointment with breast surgeon, oncologist, blood work and an MRI on Friday. On Friday they also shared that I am triple positive. Tough to understand the implications of that at this time since there's still so much unknown about my situation.

My mammogram was clear but they saw a single enlarged lymph node (left) - that's what was biopsied. Carcinoma. Yesterday they gave me the MRI (with contrast) results. The previously identified lymph node lit up (but none of the others), but the rest of the left breast appeared clear (occult?) They did see something small in the right breast via MRI. So now they are going to do a biopsy of the spot on the right breast via MRI next Monday. They are hoping that by doing it with MRI they might get another look at the left breast at a different point in my cycle.

I also will have a PET scan this Thursday. Really hoping that it's not found anywhere else. The breast surgeon felt the enlarged node and said it felt "mobile" and not matted - which reduces the likelihood that the cancer has spread from that node.

Anyway - I'm still in limbo and it's scary that they didn't find the primary in the left breast. I'm really hoping the PET scan will shed some light and that the spot they plan to biopsy in the right breast is not cancerous.

I'm definitely going through my days as if none of this is going on. My son has been sick with an ear infection. Work has been busy. I guess it's been a good distraction to keep busy - though it makes it all the more surreal. My husband and best friend know what's going on, but I haven't told my family or anyone else. I have a VERY anxious mother, so I really don't want to tell her until all the tests are in and we're close to a diagnosis. She will drive me crazy if I tell her while I'm going through the testing process - especially with so much still unknown.

Did any of you get a second opinion about treatment after all of your tests were in? I was thinking of sending my test results and films to someone a friend highly recommended who treated her BC at Johns Hopkins to see what treatment they recommended.

Any others with an unidentified primary?

RobinLK · August 2015

Thank you all for your quick replies!

Elaine - I am still pre-meno, so have not tried an AI at this point. My MO wanted to avoid due to pre-existing osteoporosis. Still an option though. I cycled through chemo and my body is continuing to fight a trip down menopause lane. It is where I need to head though... Oh yeah ER/PR both 99-100% positive her2 was FISH but report only states positive no percentages there.

Txmom - what I mean by 9 years is, I have only completed 1 year out of my 10 year hormonal treatment plan. You are correct about not wanting to cross over into Stage IV, and that is why I am here asking for help.

SpecialK - that diet is probably the only shot I have at losing any weight. I go to the gym 5-6 times a week. 3 days resistance training and 4 days cardio. (Aqua Zumba x2, Zumba, Group Fight.) my caloric intake was between 1000-1100, and not an ounce lost. Still gaining.

Iago - my MO does not like the suppression idea. Unsure why. My BS suggested it awhile back and he poo-pooed it.

The weight gain has led to other health issues. Non-alcoholic fatty liver disease and borderline type 2 diabetes. My WBCs are between 2.8 - 3.6 since stopping Taxol. Another new normal. I am in the worst health of my life these days. Cancer freakin sucks.

I am leaning toward option B. No ovaries, no risk of ovarian cancer. They are poly cystic any way, so losing them would be a non-issue. I need to go into menopause anyway. My family is know for not hitting that milestone until well into their 60's.

My PCP wants me to get infusions, should the osteoporosis progress. I want shots. My veins are bad and I have only one arm to use. In fact, at the rheumatologist office they were only able to get 1 of 3 vials of blood. 1 vein rolled and two others collapsed. I have to go back for another draw for the 2 remaining vials.

Clinging to the stinking ledge by my flaking fingernails!

geewhiz · August 2015

Welcome edwsmom - you know I was going to type an exclamation point there, but this is nothing really to be excited about is it?

I would recommend a second opinion. I got a second opinion on my pathology and as it turns out, it proved the first diagnosis incorrect. I would have missed out on tamoxifen as it showed me er/pr negative initially.

After that experience, I flew to Sloan Kettering for their rad/oncs to review my case before I began radiation. And again, I was glad I did - it changed my mind about what my course of action would be. My insurance pays for 2nd opinions. These are big decisions. You have the right to feel secure and informed in your decisions.

The beginning of everything was the hardest time for me. I just kept going through the motions of day to day life. It definitely helps to stay busy. And know that things will get easier in time.

SpecialK · August 2015

robinlk - I was also osteopenic prior to diagnosis, but stable - chemo and 6 months of Femara made it much worse, so I started on Prolia - back to normal density and no SE from the Prolia. There are a few of us on this thread on it. Here is a synopsis of the diet - I could not exercise during the time I was losing weight due to surgery in March, April and May - but I still lost a pound a week for 6 months.

http://www.chewfo.com/diets/the-virgin-diet-by-jj-...

edwsmom - I would also recommend a second opinion - preferably at an NCI center where they may have more sophisticated imaging and the latest cutting edge facilities/personnal - because your situation is a bit ususual.

edwsmom · August 2015

Thanks Geewiz and SpecialK!

I do think I want to get a second opinion.

How do you determine which are National Cancer Institute centers?

edwsmom · August 2015

Wait - I think that my current providers are at a NCI center. Georgetown Lombardi Comprehensive Cancer Center in Washington DC.

Still worth going elsewhere for a second look? I was thinking Johns Hopkins since it's about 45 mins away and well regarded.

geewhiz · August 2015

http://www.cancer.gov/research/nci-role/cancer-cen...

See if that works..

SpecialK · August 2015

edws - yes, Georgetown is NCI, in your area Johns Hopkins or U of Maryland are probably closest, also UVA. Here is the NCI site:

http://www.cancer.gov/research/nci-role/cancer-cen...

I did a Her2+ vaccine trial at Sibley in D.C., which is a Johns Hopkins satellite location - I am not sure of their resources on-site though.

Edited to add: geewhiz and I cross posted, lol!

geewhiz · August 2015

Too funny SpecialK.

I will add, that I started out at a NCI hospital... Appointments that ran HOURS late for chemo. HUNDREDS of people sitting around me during treatment. I mean, what a zoo. My doctor actually called me by the wrong name after about 4 treatments. WOW

So afterwards I switched to a doctor I LOVED. Treatment is really standardized. Get it from a place that you are comfortable with.

SpecialK · August 2015

geewhiz - I also declined treatment at an NCI center - the only one in FL is about 10 miles from my house, and I was previously treated there for an unusual tumor in my calf, and was glad to have it available because of the nature of that situation. For my breast cancer I instead chose private physicians who had spent time there - so the best of both worlds, their NCI experience in a smaller and more patient-friendly setting. I would not hesitate to go to an NCI center for a different presentation or more complicated situation that I felt required specialized consideration though.

geewhiz · August 2015

I WISH I had known SpecialK!!! ...with a Stage 3 diagnosis, I was terrified. I guess we all were, though right? I did not know where to turn in the beginning. So I figured, the NCI was best. Now I understand that herceptin is herceptin, no matter where you get it. My center took me almost an hour and a half each direction...and the experience once there was terribly stressful. Just an assembly line of sick people. My sister is a doctor and had been pleading with me to go see this one oncologist (head of a HUGE practice here). The second he saw me, he walked in, smiled and took my hands and said "You will be fine". His entire manner and demeanor completely changed my attitude. Some doctors are healers. Then when I saw his chemo room with I love Lucy movies and Carole Burnett reruns with fresh flowers and warm blankets everywhere...I was so sad that it could have been SO much easier for me. BUT, I did finish herceptin overlooking the fields and watching the sunflowers. Gamechanger.

SpecialK · August 2015

geewhiz - I'm so glad that you found the right place finally, and yes, the fear at the beginning drives many decisions, doesn't it? It is so hard to know what to do when one is a bit panicked. I was oddly fortunate to have been previously treated at the center near me and knew that I needed something gentler, even though I knew the treatment would not be. I love my MO - a great combo of knowledge, compassion, humor, and respect for my wish to be an integral part of my own care.

SDCA76 · August 2015

I was scheduled for surgery and cancelled the day before it because my second opinion advised neoadjuvant therapy. Then I saw the oncologist and got scheduled. This made sense to me and allows me to qualify to get Perjeta. It was hard to delay my start of treatment but I finally had my first chemo yesterday and feel like I am making a step in the right direction. My insurance paid for it.My daughter was born (obviously not related to the cancer years ago) at a center/teaching hospital where they have a cancer center that is highly regarded. The atmosphere at the hospital did not suit my comfort level so I would personally not consider it. My current hospital is also well regarded and I have loved the ambiance and atmosphere and think I am getting similar treatment.

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