TRIPLE POSITIVE GROUP

Went for my 3 week herceptin treatment but could not get it because they also did an echo and my EF was 35. They seemed very concerned and told me I have to come back tomorrow to see a cardiologist. Jumping through hoops here!!!!

I dont know. Since they concerned neither was I. Will have to look it up. Wonder what they will have in store for me next.

They for sure will not want you to do herceptin until your left ejection fraction recovers. It is well known to do that. I had to stop for several months, because mine dropped more than 10 %. I think they want you to see the cardiologist just to make sure that you are ok. Sometimes it seems like the ejection fraction can be misread, or is open to interpretation, by who is doing the heart scan. They are just calling in the professional cause they don't want to kill you!

Good idea I have to see their cardiologist tomorrow and will request a redo. I'm tempted to take last years results from my own cardiologist for comparison purposes.

Blownaway, I had a 2 month hiatus from Herceptin. I started out with an LVEF of > 70% and I dropped to 50%, so they stopped me. I recovered back up to 65% and finished the 1 year course. So see what they say. I wouldn't worry too much since it is pretty common.

Congrats to everyone on NED and finishing chemo! I find myself antsy these days, always feeling my breasts and finding things. I'm a neurotic mess after this whole thing some days...

Many of the supplements at the Vitamin Shoppe are soy free. But you need to check. I get a lot of them there. Thing is the amount of soy is so little but every little bit you can remove of (processed) soy might help.

Blownaway -- Hopefully, that will do the trick and the new drugs won't have any troublesome SEs. I'll be resuming herceptin infusions once I have surgery and begin radiation. Sometimes, it seems like treatment will never end.....

Pbrain, you are not alone! I am a neurotic mess too! I definitely do not recognise the interior geography of my breasts anymore, my bumps have lumpy bumpynesses. My friend on another friend (i mean thread!) who is almost as hilarious as SusanHG123 here, calls the place where our minds can wander, "crazy town". I knew exactly what she was talking about, and I live near there too!

tomboy, PBrain ,

Think that as we get further away from active treatments and the frequent tests and doctor visits we kinda feel we should be doing SOMETHING proactive to make sure we're ok.

Think some panic sets in when it's just us and our bodies.

Had my last herceptin on Thursday, got to ring the bell.  It was kind of emotional.  Onc says I am doing great and he doesnt want to see me for 6 months.  Just had my ovaries out two weeks ok, so he is switiching me from Tamoxifan to Aremidex now.  Scheduled for my exchange surgery with lat flap Dec 29-very ready to get that show on the road so I can start recovery.  Been a heck of a year....thank you all for your support and helpful knowledge. 

Congrats Vettegirl

Hi Ladies.

I had a bone scan Friday--with NEGATIVE results!!!! I have been very nervous about this scan--a lot of rib pain, spine, and back pain for a long time. And the pain is getting worse. I kept telling myself if the bone scan was negative I could deal with anything else. Well-i probably lied. So now what? This hurts and is getting progressivly worse. There are areas on my ribs that-with pressure-cause extreme pain--up there with the 9s and 10s. I wake up with pain-location depending on the way i am sleeping. My hips hurt some--but I am giving that to old person pain.

I know pain can be increased by lack of sleep--and my sleep pattern is worse than when I had three children under age 3. I am either awake and trying to force sleep for 3 hours a night or on a cannot wake up pattern and sleeping 24+ hours. Femara?

I am beginning to wonder how much of this is just turning the corner to "bat-shit crazy". I have NEVER focused on my health or lack there of. I worked in highly acute hospital areas-as example an infant to age 2 pediatric isolation/ICU where many of the kiddos died of bad stuff. I NEVER worried about contaminates--and this was about the time the dead sea was still sick and PPE-personal protective equipment consisted of a finger cot and a mask (if I could find one). As a nurse I never contracted anything. When my children were little I never got "kid crap" because I probably built immunity from working.

Now, every litte change says to me---METS. I am grateful the bone scan was clear and clean. But now--why do I have pain? I should start writing medical mysteries. The anxiety I NEVER had is out the roof. I do not want to start doing anything to my house--just in case something bad happens and I cannot finish. I am turning into "one of those women". I refuse to join that purple hat club-have not been asked either; make sure I have a full stock of Chanel #5 in case I develop the eue 'd little old lady urine smell; have enough pair of spanks for Oscar night--but does nothing for the look of pregancy my belly has; but; cannot seem to let go of the word "cancer".

And now new studies on benzo's leading to dementia. No Shit Sherlock. An occasional benzo fogs my brain a tad and allows me to avoid the Big C thoughts. I was/am strong and independent and willful. Nothing got me down. Nothing. I could fight my way out of a corner verbally and always arose the winner. I have worked mental heath for years. I really do not think I have a major depression or am falling down some dark hole. I really believe this is cancer/chemo related and I cannot find the research to back my thought.

I feel I should be back to my snarky, sarcastic, get-with-the program/nothing gets to me self. Intelluctually I know part of it is not finishing taxol due to toxicity, then only having 1 taxotere due to really horrible toxicity, then only 20/22 herceptin. i was so much stronger at the beginning. The 2-year mark hit and it is like I shattered.

Seriously ladies. Anyone with me? I am strong @ work. Maintain my ice queen composure. I still see a therapist-part of the treatment team. He is on board through at least the 3rd year mark. Still want to punch people for being idiots in general. Avoid quick-stop stores during high lottery times so i will not point out the need for feeding children versus lottery tickets. Have no difficulty discussing sense of entitlement with university students when they see me to complain "someone failed them".

Am thankful for this group.

Much love and open to any and all suggestions/opinions/offers to join the pity party.

s

Hey all,

I have been so busy haven't had time to read or catch up. The company that I have worked for for over 25 years is closing as of the 31st and i have been shutting it down and organizing the inventory distribution and destruction. At the same time I am opening a business to do some of the things that this company did. It allowed me to stay employed for at least another year and keep the majority of the current people employed for another year also. I am exhausted but am almost done with all this stuff and can't wait to just get back to normal work.

I wanted to stop in and say Merry Christmas, Happy Hanukkah, and a very Happy, Healthy, NED New Year to you all. I am so grateful to have met you all and I so appreciate all the support and advice you all have provided. I will toast you all New Years Eve!!

SusanHG 123

I am going through the same process with joint, muscle pains. It is getting worse . My hands, hips , lower back all getting stiffer and more achy. I exercise and do yoga faithfully . Without that , I believe I would be even worse.

My MO is very sympathetic to my complaints and my requests for a change of meds. He told me he didn't want to frighten me but before he changes the med he wants to rule out other causes ,, arthritis( he was pretty sure it was arthritis) and mets .(. Just had a hip x ray BC that's where it all started and my hip is normal.

I have to see him in April and he said we will have the discussion again. The plan, I believe, is to take a month off and then switch. He says if it's the meds, we will see relief within a few weeks.

Look... We have no friggin estrogen... Our female bodies need some estrogen. It's a dilemma:(

Anyway... I hear you. Think we're seeing a pattern here....

Lago ...

Same with me on the timing.. Two years and standing straight ! I think yoga has helped me with the psychological issues but they are there .i definitely believe they are at least partly the result of the meds.

These are relatively new meds so they might not have data on long term S/E's .I'm in that trial but don't know how useful that will be .

I understand the pharma companies monitor these forums.

Hello! Are you listening?