TRIPLE POSITIVE GROUP

hello all - yep weird achy joints but it is tolerable; may intensify as I continue to take it - hopefully my liver enzymes are fine - I’ll know next week 01/10 - I left a voice mail with my onc on the spotting - he was so sure my ovaries were inactivated by the chemo, we don’t need ovary suppression meds but I’ll see what he says - happy new year, guys

thank you all TPBC Warriors

In a few facebook groups, no mention of first trying H/P ... do you feel the side effects are less on Kadcyla? Does Clartin help with the bone pain?

Also a little nervous since I was ER95% and PR90% age 50 and I have not started Tamax or ALs, might ask them to run my numbers again.

Kdhoney/Angie...I had surgery first, well 2 lumpectomies, then chemo then #3 because they found DCIS with reincision for clear margins, shoulda went with my first instinct to cut the bitches off, LOL....Well I might get switched anyway, just got a call from CT Chest, PET Denied, found clear margins BUT "auxiliary node tail mass", Ultrasound on the 7th.

Can ya-all help me think through something? I am totally a type A person and do not do well in grey areas. So, I am 12 days DMX - everything is going well but I am stuck on my pathology report. It said "areas SUSPICIOUS for lymph-vascular invasion." Now, that means in my mind - maybe its there, maybe its not. My SN was negative but there was nothing mentioned about the vascular or venous side.

So, my question is - can they look again and try to determine for sure if it is there? Is that something I can ask them to do? Or, is it worth sending the slides to MD Anderson or John Hopkins?

Everything else from the biopsy to final pathology remains the same or expected - for example the size was a bit larger but I waited 70 days from DX to surgery so that was expected.

I am assuming that if there is lymphovascular invasion the treatment plan would be more aggressive. And, I don't really want to do aggressive unless I have to.

LaughingGull...I did read your reply...thank you. That actually helped alot but what I am uncomfortable with is the wording "suspicious for..." And wondering if I can have them look again or if it would be worth a full request for a second opinion.

Just like in a crime, I can have a suspect but I need evidence to convict. I am trying to process how to discuss treatment when there is no conclusive evidence.

Lymph node was clear so I am comfortable thinking it is not necessarily spreading via lymphatic system. But vascular system, in my research, can be confirmed through small venous examination. I even pulled my mom's pathology report from 13 years ago and it listed evidence positive for lympathic and negative for vasuclar as 2 separate, distinct line items.

ElaineTherese...I understand Triple Positive. My mom is a 13 year triple positive surviver from Stage IIIa.

I opted for surgery first and have a pre-surgical oncology plan that will be finalized based on the final pathology.

My options to treatment will be the level of chemo that I do and that is where the question comes in. Weekly taxol was an option before final pathology. Chemo can have wide ranges with varying toxicity. I would like to address the chemo side with as little toxicity as I possibly can.

There is no question of other treatment options...Herceotin, anti-hormones, etc...

ElaineTherese...and there is the lesson of the day, week, month, year for me...that "there are no certainties in life or cancer." As is blatanly obvious I am a pretty black/white person that does not function well in the grey. If there are lessons to be learned from this sucky disease that will be the one for me.

Thanks for the gentle reminder!❤️😊

Hi,

I am 3 months off chemo. I am still on kadcyla. I was spotting for a week now and its turned into bleeding now. My gynecologist appointment is not until next thursday. Did anyone have any bleeding issues couple of months after chemo?

FNPMom - I am pre-menopausal. I am not on tamoxifen yet, i am supposed to start it after i finish radiation in 2 weeks. It does look like ovarian suppression is needed as well. Keep me posted.

Lulu44, I just wanted to chime in about ovaries removal and AI. Your diagnosis and mine are similar. I was pre-menopausal when diagnosed, and I also had ovaries (and tubes) removed, and started AI nine months after diagnosis. I was 47 at diagnosis, and 48 when I had my ovaries removed and started AI. I am a year and a half out now. I am doing great. I am very active, have minimal pains and aches, hot flashes are not significant, I am in great spirits (weaned off antidepressants many months ago), didn't gain weight and I look great. My most serious side effect form the AI, and it is a very annoying one, is vaginal dryness, which interferes with good sex, but doesn't preclude it.

I used to have ovarian pain and cysts, and after the ovarian removal they found a bit of endometriosis (which explained the ovarian pain); I also had an episode of thickening of the endometrium and vaginal bleeding the year before the breast cancer, and I was having my period every three weeks -these are normal peri-menopause things. All in all, I am very happy I got my ovaries removed, I am done with periods, done with ovarian pains and bleeding, done with the monthly hormonal-emotional roller coaster. Not sure how old you are, but trust me, natural menopause and peri-menopause are no picnic. Keeping your ovaries wont keep you young into your 50s, you will still go through menopause, there is no way to avoid it and it's no fun but doable.

Second-opinion doctor at MSK told me that attacking the hormonal component of my breast cancer aggressively this way (oophorectomy + AI) was a really good thing and that she would have recommended it.

Just wanted to send a positive message your way. Don't be scared of ovarian removal plus AI. You can do it!

LaughingGull

Lulu44...that's so interesting about your shingles. I'm through TCPH as of 11/14 but have done two doses of H & P and will be starting Kadcyla on the 16th. About 10 days ago my right forearm broke out in what look like pimples but extremely itchy. I keep long sleeves on in order not to itch them and started using a roll on aspercreme with lidacaine and I take benadryl at night just so I can sleep. Yesterday, the left side of my nose by my eye has been driving me crazy with an itchy stinging sensation. Feels like the same thing as my arm. I haven't seen my MO yet but now am thinking of going to the Dermatologist to get it checked out. I had no idea that these could cause shingles. I've been googling nerve pain (not nephropathy) and didn't come up with much. I'll keep you informed if I find out anything...please do the same!

Flnana- i don’t mean to tell u what to do but I’d go to a dermatologist and have them actually test you for shingles. Mine don’t look like typical shingles and they’re on my bilateral hands, forearms, biceps, shoulders, neck and upper back. At first I thought they were bug bites but nothing would take away the burning itch. Then I had an area of redness with skin thickening on my forearm & realized it was definitely not bug bites. The derm said that it’s not a typical presentation of shingles but I was/am immunocompromised so if anyone is going to get weird presentations it would be me (us). My TCHP got delayed 3x because of low neutrophils so I know I was susceptible. I saw that Kadcyla can lower neutrophils but it’s not one of the main side effects/toxicities. I had to search under their “healthcare provider” section to find it mentioned. I wish I had been vaccinated before chemo

Taco1946 - what was premarin for? how many years has it been since your ovaries and uterus are out.

Keep in mind a lot of people do chemo (especially Taxol) without a port. My MO said she'd prefer I try it without one (which was my preference anyway)--it's another surgery, another scar, another reminder. IVs were fine for me.

I'm with BigPeaches. I was very glad to have the port. And I can't find the scar from the incision. Some doctors will do the incision between what would be the straps of your bathing suit if you are worried about that. I'm glad they are giving you a little time between port insertion and start of chemo however.

BJI - I was superstitious about getting mine out too but MO said she was confident enough that I won't need it that I had it taken out after the first mammogram after I finished the Herceptin. Our diagnosis and treatment look very similar other than I switched to femora.