TRIPLE POSITIVE GROUP

Kae,

I had a different chemo regimen than Special K. I had Adriamycin + Cytoxan (four times over an eight week period), and then Taxol (w/Herceptin and Perjeta) for twelve weeks. So, for me, it was five months total of neoadjuvant chemo. My twins with autism didn't really pay attention except for the fact that I got a wig. They liked to try to pull it off my head! Grrr.....

specialK and Elaine,if you dont mind,may i ask what tests you did prior to neoadjuvant chemo?i know 2 d echo is needed together with muga scan to check the heart?did you also do blood tests? i am curious if tumor markers are done prior to the chemo...my pcp ordered ca 125 for me because i am having pelvic pains,it came back slightlyhigh and my pelvic ultrasound showed my ovarian cysts which i have had on and off for years due to my endometriosis,no other suspicious findings ..thank you very much.

thanks elaine

tunegrrl,

my husband works 12 hour shifts/ 3 times a week... i am trying to figure out the best times for him to schedule himself as they do does self scheduling at work.maybe off on my chemo day and then work on my day 2 and day 3 post chemo, then off on day 4?...i know we all have different reactions so i wont know until i have my first cycle.

thanks elaine! will keep that in mind.

Tunegrrl,

did you take Zofran even if you did not feel nauseous?i see you took Lupron?my surgeon mentioned that in our discussion since i have endometriosis and simple ovarian cysts right now...

Hi everyone. This is my debut on the board. I have been reading your posts, growing stronger, educating myself and learning from you. Thank you.

After 22 years of annual mammograms and call backs, my number finally was called. It has been a whirlwind of appointments and spells of high anxiety. I must say this once. Had I seen the radiologist reports 10 years ago in lieu of the beautiful letter saying all clear, then I probably would have joined you sooner. Shoulda, coulda, woulda. I have a new first class medical team and I am now on that road with you, just had my routeupdated in time.

The month of January was spent attending a IDCDCIS seminar, generally between 2 a.m. and 4 a.m. every night. Yes, "sleep more and don't read stuff on the internet" were two instructions I ignored. Thanks to everyone here, there have been no surprises. My notes are prepared in advance and I don't need to write down what I am being told. I have most of what to expect on paper and understand the terminology and jargon when meeting the team. Confirming my understanding during the staging process appointments worked for me. I focused on new information.

Day 3 of TCHP and I am doing ok. Frankly, I must attribute that to the generous spirit of sharing, plain talk, real talk, comfort talk, serious talk, funny talk, and happy talk I found here. So, please keep talking around this virtual round table. Even if a post receives no reply, I can say with assurance that I am reading or someone else is.

Again, thank you.

ladies, i know somebody who's chemo was cut short because of severe neuropathy. may i ask what supplements/preparations you did that helped with chemo induced neuropathy?i am currently taking biotin and vit b complex. i have heard about icing fingers and feet....

Suburbs,

we are diagnosed around the same time but im lagging behind with treatment due to insurance change. i am going to meet with my MO on thursday and then i will know what chemo i will use neoadjuvantly. did you have pet scan? did you have biopsy of LN's? so far my mri is clear but i want a pet scan just to be sure.also, did you have 2 d echo or muga scan? i think i will also request for a nutrition referral.thanks!

kae - I had surgery first, then TCH. Perjeta had not yet been approved when I was treated. My surgeon ordered BRCA testing and a pre-surgical MRI. After surgery my MO ordered CBC, CMP, CA-27/29 and CEA - which are both tumor markers, and Vitamin D testing. I had a CBC weekly between chemo infusions to monitor my blood counts. My MO continues with that same battery of tests at each appointment and I am 6 years out. I had an echocardiogram (some have MUGA, but I didn't), prior to the start of chemo, then quarterly through the year of Herceptin, and one about 6 months later. I had a pre-chemo PET, a post-chemo PET, one after Herceptin, and one about six months ago. That last PET showed some abnormalities, but I could not have an MRI due to having a tissue expander in place, but had one post-exchange. To ward off neuropathy I took 30g of L-Glutamine and a capsule of B6. I iced fingernails and toenails to keep from losing my nails, but not for anti-neuropathy.

suburbs - welcome!

I took B6 for neuropathy. Following chemo I was left with mild tingling in my toes, so I continue to take it. I went off it for a few months, but the tingling got worse.

thanks ladies. special K, that is a very detailed work-up pre and post chemo,Tresjoli, it seems that everybody feels pretty bad on day 3 of chemo, Debiann, i am taking B6 now so its good to know it worked for you.Juli24, yes i read somewhere that taking Zofran in advance helped a lot, too..

kae, you asked about lupron and zofran...

I had Lupron injections beginning two weeks pre-chemo to shut down my ovaries, protecting them from chemo. I would like to not be in menopause at the end of all this hell, and with the lupron injections i stand a better chance. I would like to hold on to a wisp of hope of having another child. And i think of myself as a juicy, sparky, pre-menopausal babe and am not yet ready to surrender that.

Lupron and chemo definitely slammed me into chemopause. Hot flashes and parchment-like southern dryness. Worth it for the hope i am looking for. A month after chemo those symptoms faded away, and i felt back to normal (except without periods) for the two months while still on lupron. It can take weeks or months for the effects of the lupron to wear off, apparently, and it was officially active in my system until the end of January. So i am eagerly awaiting clues. Will go for bloodwork in a month.

An upside to NOT using lupron, though, is that there is some evidence that women who are tipped into menopause by chemo do better than women who are not. A permanent reduction in estrogen levels.

As for Zofran, i think it is fair to say you will know if you need it. I had four different anti-nausea medications that i mixed and matched without relief rounds one and two. Round two i had 30 hours of nausea and vomitting, 21 rounds of vomitting, popped a blood vessel in my eye round 19, landed in hospital for iv fluids and tests. Continued vomitting at the hospital until they gave me zofran in my iv. All the difference in the world. After chemo rounds three and four, the wild dogs of upchuck chased me but never caught me. When i no longer felt them on my tail, i eased off on the zofran. Zofran and senekot go very well together. Zofran constipation is no joke. If you can sleep well and have good digestive health, chemo is much much easier to endure.

In retrospect i wish i'd had the zofran rX on hand to fill if/when i needed it.

Best of luck

Hello everyone!

Glad to see so many wonderful ladies here. This is my first post! I just completed my 1 year of herceptin and currently taking Anastrozole daily. Sometimes I get tense thinking about recurrence.

Best regards to everyone!

Hey ladies. I've done 5/6 chemo's. Finished my 3 FEC, which I got through pretty easily, but the Docetaxel is kicking my butt each round. One more. Can't wait to have it over with.

One question for you...I see a lot of you have/had Herceptin or Herceptin and Perjecta before surgery along with chemo. My hormone receptors weren't discovered until after my surgery so I didn't know I was triple positive then. No Neoadjuvent (sp) for me. Also no perjecta, just herceptin for the next year. That is my only regret, or question, so far through this. Would I have had a higher chance of success, or lower percentages, if I had known beforehand? Would it have changed my choices? I don't know, maybe. I at least may have had a M instead of a lump. I wish I had known that they should have had it from my biopsy so I could have looked at the full picture.

Are my chances of reoccurrance higher because I didn't have neoadjuvent chemo/herceptin/Perjecta?