TRIPLE POSITIVE GROUP

TonLee, so nice to see you here, with your crazy laughter!

I was asked to see a neurologist when I complained of pain in my feet. I found it interesting that he asked me how my hearing was. When I asked him why, he said where there's a nerve, you can get neuropathy! I never thought about it like that before. Hmmmn.

Hey, SulaDog!

My herceptin infusions were an hour but I think I should have had 90 minutes. Herceptin alone did affect me, particularly where my energy was concerned. Ladies, don't ASK for a 90 minute infusion, TELL them you will have a 90 minute infusion. If they don't go for it, I would get a different oncologist. Its such a simple, small thing to change but the effects can be big.

TonLee, great to see you here.

Liz

tomboy,

Here you are!! I was looking for you over in Crazy Town!!

Momma,

I only iced my head not hands or feet , I didn't get neuropathy , I was also taking 3 tsp of L Glutamine twice a day, starting before I started chemo, all 12 weeks of chemo and then for a month or so after I finished.

Tonlee,

The cold caps were a totally new thing for me. My MO at UCSF suggested them and I was very skeptical about how well they'd work if they were safe etc...25 yrs ago when I had chemo the last time there were no cold caps and like you I absolutely LOVED my super short hair after. I liked it do much I keep it short until last year when Indecided to grow it out again. The only other time I did that was right before I was diagnosed the first time back in 1990.... Wouldn't ya know it as soon as my hair was long...cancer again so this time I decided I was going to keep what I'd been growing!

greta - nosebleeds are common and happen for a couple of reasons - chemo causes soft tissue irritation and causes your platelet count(clotting factor in your blood) to drop - those two combined equal nosebleeds. Be careful if or when you blow your nose, or if you can't get the bleeding to stop. Keep the inside of your nose moisturized - I used Aquaphor on a q-tip, put it up your nostril and then pinch your nose to spread the Aquaphor around.

thanks SpecialK. Will give it a try. My sinuses have been very dry. Will pay attention to my lab results!

Lago the chemo my daughter was on caused her some temporary hearing loss but not tinnitus. I don't know the name of hers. Didn't cause hair loss though. She had adenocarcinoma vaginal wall.

Tomboy,

oh yeah, no kidding. I was really tempted to cut it off.. I'm such a superstitious Italian

Tamoxifen and I are on a 2 week break.

WARNING LONG RANT...

I just got home from an appt with my MO. I have been taking Tamoxifen since May of 2014. I have gained 45 lbs since being on it. My bones and joints are killing me, I have non-alcoholic fatty liver, borderline diabetes. I take pain meds night and day. I also am having short term memory loss, no ability to focus/concentrate and recently began having panic attacks, and tinnitus.My RO says all is from the monster pill. As of today, I am on a 2 week vacation to see if symptoms improve. I have been trying to go off Effexor, ended up in the ER with vertigo like symptoms, I have been able to decrease the dose by half. If I miss a dose, however, within a couple hours the vertigo symptoms appear. Edited to add insomnia and other sleep issues are also occurring with tamoxifen.

Edited again to add I was Stage 3, grade 3, Triple positive. So will need to figure something out because MO is not comfortable with my wanting to stop. He mostly refers to the 9 lymph nodes that were involved and the fact that they were extranodal. Not to mention the lymph vascular invasion. SUCKS.

Edited to add: foggy brain is causing all these stinking edits. Depending on the vacay results, I may be removing my ovaries. I told my MO that I really feel like my body is fighting to stay out of menopause. I cycled all through my chemo. He said that is very possible. with removal of ovaries an AI would be next. All the new studies suggest that is better for lobular anyway

Wow! I haven't been on here for months. I see the Herceptin discussion is up again. I'm with TonLee, I think the shorter infusion times caused my heart problems and thus unable to continue all treatments - I made it through 10. Slower has to be better.

Just finished number 4 of TCHP. Gout good news from follow up echo. Heart is good no

Changes and ejection fraction still at 71. They were talking about raising my dose (I was down to 80% of full dose but my blood counts are trending down. Not bad but myhemoglobin and hematocrit are just below normal as are potassium, calcium, phosphorus and total protein. To be cautious they lowered the carboplatin again as those are a sign of kidney changes. Iamhoping this will make for less se's. I did have a scary experience. They increased my iv benedryl due to a skin rash that has shown up. The extra benedryl caused me to have several petite mal seizures. The nurse said next time they will use oral benedryl at a normal dose.

RobinLK You can always ask if you can have your ovaries suppressed with meds and try one of the ESD's (Tamoxifen is an EBD…estrogen blocking drug). Granted you might suffer from hot flashes. I switched from Anastrozole to Exemestane. I find on the Exemestane I didn't have the same weight issues. Granted I've but on some but that because of another med I'm taking. But my weight isn't a problem even with the extra pounds.

Kate,

I desperately wanted that back in 1990, just for safety's sake as I was TN back then. But back in 90 that just was not done, no how no way plus I was in my 30's and they thought I was crazy wanting that. The idea of a preventative anything forget about it. I felt I was walking around with a time bomb on my chest for 25 years. The second time last year I was TP so go figure, stuff changed. I didn't test positive for any of the mutations either for BC or OC yet I've still had breast cancer twice. If this were my first time I'd be demanding they do the other one

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC279923...

Has anyone ever seen this article does is mean we have better chances than her2 neg

ohh its metastatic but still it's a plus for trip positive I guess

I'm a UMX and I really wish I had pushed to have the other breast removed. I tentatively brought it up a couple of times but was told that it wasn't necessary, so no. I wasn't completely sold on the idea then, so I didn't pursue it. Now I wish I had. I guess hindsight is always 20/20 lol.

KateB79 I always wanted a bilateral but my BS initially said there wasn't a need to remove healthy tissue but would support what ever I wanted to do. Then there were 3 suspicious areas that showed up on the MRI. Said they would need to be biopsied every year. One he was concerned about. Didn't even biopsy. Just did both. 2 were cysts and the other was LCIS. I made the right decision for me. LCIS increases your risk of breast cancer in both breasts. I had dense breast tissue too. Dense tissue is a great environment for breast cancer to grow so once it starts