TRIPLE POSITIVE GROUP

My cardiologist told me in June that he thought this was going to be common practice. He gave a presentation to the oncologists where I'm treated. I'm on the lowest dose of heart meds to keep my heart from remodeling. My last echo looked good but the plan is to keep me on for another year and then stop.

Hi Loj-57 I was 54 when I was diagnosed 5 1/2 years ago - just turned 60 (YIKES) in September. 

Are any of you having regular echos while on the aromatase inhibitors only?  I think I'll ask my docs about that, I didn't realize, until now, that there was an increased risk of heart issues with them.   Because of all the pain issues I have it's hard to exercise too.

THanks ashla - I'll be talking to mine to!

Wow, I thank you for the info. I just started arimidex. Had no idea about heart issues

Hi Cindynic,

We seem to have a similiar diagnosis......I will be starting chemo Dec 7, I've chosen to take the time off work because I work with children with disabilities and behavioral issues. If I had a less physical job, I think I would be able to work. I will use STD to still have part of my income. My MO said my side effects with taxol w/herceptin will be minimal, other than losing my hair...which I'm using cold caps to help keep hair!

G/L to ya!!!

Jodi

Looks like my period may be back. Does this freak anyone else out

had Lupron shot 2 weeks ago and started my first period since chemo today what's up with that?! Still not on my aromatase due to insurance being idiots hopefully get it next week

CyndiNic  That's pretty positive thinking of your MO.  I would definitely take it one day at a time and if you need to take the time off of work do.  My regimen was a little different, I tried to work through the whole thing, that did not happen.  My one regret is that I wish I had just taken off of work for the whole thing, my company did have Short Term and Long Term disability.  Every one reacts differently to the treatments some breeze through, some don't.  I found that, even though I lost my hair, I generally didn't look bad, so when I did go to work they just figured that I could do it all, I tried and tried, but with each treatment I was less and less able to work, my MO said he was surprised that I worked as long as I did.  Good luck, wishing you minimal side effects!!

You would qualify for the ATEMPT trial. You should look into it. 75% chance to get tdm1, no hair loss and minimal side effects. Is being done at all major cancer centers

Thanks for posting the article ang. I am one of the "rare and unusual" with a toxic side effect of herception. My left ventricular ejection fraction was 60ish at base line. Dropped to 50s. Took a break from herception. Moved up. Started again and dropped to mid-20s. I also had adriamycin AKA The Red Devil. Thus--I am banned from herceptin forever and a day. Only completed 17 week doses. I am on cardiac drugs, have tried to wean several times, but my shortness of breath becomes overwhelming. Now that I am on my 2nd cycle of IV iron I run out of air constantly.

I recommend anyone on herceptin have a cardiac consult. And maintain contact with the cardiologist. One of my scariest events was during a non-stress stress test (I did not run on the treadmill-was on a table and injected with drugs) and suddenly I was surrounded by those in long white coats. I asked one of the docs to move a bit so I could see the monitor and he gave me a look of WTF. My unfiltered response-well crap. All of you are here because you think I might crash and burn. Not a fun day. Call cardiology and have a baseline screen. Please.

I have an appt with a cardiologist on Mon. I made it myself. I am a retired NP and worked in internal med. for years. My EF is good but I showed grade 1 diastolic dysfunction on my recent echo which was ignored by my clinical trial team. This at the #1 hospital in the country. I will be on kadcyla till Aug. Oncologists have to start looking at the whole picture. Not just the EF. You can be on your way to CHF with a normal EF

Ashla, I wish it was that easy to get them to listen. Well, I think they may be listening, but until just a week ago, they didn't offer any help, and no response but a blank stare. So it really makes me wonder how many of the side effects are under reported. Like way under reported. I am back on tamoxifen too, because even though some of its scary side orders scare me, it is much better than what femara did to my feet. It has been over eight months, I am pretty sure they are permanently wrecked. So, now, as of a week ago, I have a pain management/anesthesiologist doc. Weirdly, one of the first things he did was put me on a blood pressure medication. Weird to me, because my blood pressure is always the one thing that is perfect on me. That worried me that that might potentially wreck that, but he assures me it will be fine. Side effects of that medication-- besides the extremely dry mouth is... a surplus of energy! It makes me feel like I used to feel- pre cancer bullshi. And I am loving it! Spiders in the corners beware!

So, yeah, I agree with you, they just don't know what happens down the line, like ten years after you finish ten years of A.I.'s. I don't want to be the petri dish, really.

Hello Sula! And hello SusanHG123!!! Congratulations to everyone I haven't met here yet, that are finishing/have finished treatment!

Hello Ashla! And SpecialK! And Moonflower! And lago! I had so many pages to read, cause it fell off my faves, i had promised myself to read each and every post before I posted, so I could be all caught up again.

Too many newbies, as usual

Its clonidine. I swear, the first day I took it, I was running up and down the stairs two at a time at my house. My shop where I make things is downstairs, and you kind of have to be a mountain goat to get to my house proper, lots of twists and turns and changes in elevation. I use to fly up and down them, pre-bc. Then after femara especially, I turned into a very slow and feeble goat, on account of my feet. So, I have noticed the energy has calmed down just a little, but still, I am getting like the cobwebs out of the corners, moving furniture and cleaning all resident bugs out! Banished! All the stuff I have put off for 3 years. Getting rid of crap. Working on my writing and my art for a change! So I am grateful, but I have noticed, I need to chew gum because my mouth is so dry! So the clonidine does that. I am wary of doing this for long, I don't want to mess with my perfect BP!! He did raise my neuron tin to twice a day, but it is barely affecting the pain of my feet. I can't believe I have to live with my feet like this for the rest of my life? Ok, and I am supposed to see him for a possible nerve block? That's freaking me out! One in the shoulder blade area that is supposed to take care of the breast and rib cage pain. And one in the base of my neck? For head aches? All I know is that if something went wrong, it can paralize parts of you, and I don't want to risk that. Can anyone tell me that they are safe? I wish they were.

And I am wondering about pbrain too.

Tomboy -- It's interesting that clonidine gave you such a burst of energy! My son's psychiatrist prescribed him clonidine to help him sleep! It actually ended up making him anxious and aggressive, so we took him off of it.

TTfan -- Congrats! I'm hoping to join you soon. I haven't had the "port removal" discussion with MO yet. I wonder what she'll recommend? I guess I don't hate my port as much as you did, so I wouldn't be opposed to keeping it for a few years.