TRIPLE POSITIVE GROUP

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.

my feet are killing me. It started a few weeks into tamoxifen. The doctor thinks it's the Lupron and forced menopause instead of the tamoxifen. But I'm only 40. How I am I supposed to live the next decade in pain from my feet? Ow ow ow MY FEET!

tresjoli - it may be delayed onset neuropathy from taxol - talk to your onc about it, you might want to see if some of the Rx for neuropathy will help.

tomboy - my BS initially thought my lymphedema was RSD and was in the process of arranging for an injection to ease the pain I was feeling.  I had classic axillary web syndrome - just like the diagram shows, but he was leaning toward RSD because I had increased symptoms in heat, decreased in cold.  This is where he was going to send me.  Read the diagnosis info and see if any of that sounds familiar.  I would have received injections where the neck meets the shoulder.

http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html

Oh, no, tesla! You did fine! It's just that an epidural is a kind of nerve block too. I didn't know what area of expertise you have, maybe obstetrics? it's okay, don't worry about it.

SpecialK, thanks! I am pretty sure thats not what I have! I do remember finding that on wikipedia, though, a while back. I think what I have is post-mastectomy pain syndrome. Even though I only had a lumpy, or what they call a quadrantectomy in some of my clinic notes, and a partial mastectomy in others. Women can get it, even with a slight lumpy. I think mine is caused by an inflamed (so-called-benign node, that sits right on my rib cage, and that BS refuses to remove. ) And I wish she would, I already have a pretty severe case of lymphedema, as her predisesor kept telling me that I didn't have it, until it was too late for my arm to return to its former self. I just really want that node out. And the other shot he wants to give me is in my neck, back of head, on opposite side.(for head aches that seem to be originating there) I think it's caused by tamoxifen. It started then, and when I got a break from it, the pain level diminished. I just don't want to harm those nerves permanently, which there is a chance of, when they don't even know if they will help, and certainly not permanently. Those shots are painful, I had them for A.I. trigger thumb. Also not permanent. I just don't feel that he is forthcoming about what he would be injecting, what the procedure is called, or much else, including possible complications. How can I sign an informed consent, if I am not informed. They give you the paper to sign right before you do it, when you are already in your gown, ready to happen.

Quick question (and I apologize for derailing the ongoing conversation): I've been having a lot more bone pain this round (5/6), especially in my hips and lower back, and especially at night. Is this normal? Of course I'll tell my MO about it when I see her on the 25th. . . I think I'm seeking reassurance.

Kate - often the SE are cumulative so it is not unusual to experience more intense responses as you go along. Also, if your hemoglobin is dropping with each infusion, which usually happens, your muscles are not being oxygenated as well, which can translate to pain

Ladies, I am confused. OB/GYN has metastatic breast cancer listed in my ovary pathology report. Is it referred to as such because of the LVI and extranodal extension? I thought only Stage IV is considered metastatic.

Edited to add: pathology of ovaries is no malignancy. Phew.

robin - probably considered loco-regional metastasis due to the positive nodes.  That is the way mine is classified.

Uh Oh. SusanHG!@# !!! Resorting to touch, that might not be half-bad!

Interesting but kind of awful. My man has a friend who found out more than a year ago, that he had Chronic Lymphocytic Leukemia. That they just were monitoring by blood tests. Okay, he had shortness of breath that was alarming, he went to urgent care, and his white blood cells were whacked, so many many more than was healthy. He was actually quite sick- he didn't realize that it would feel like that, he thought he had the flu.

Okay, so the very first round of chemo, they kept him overnight so they could monitor him, I guess they have to, I don't know. Then they sent him home. When all this started, he was in the middle of getting his very first smart phone ever, he had only had the flip-phone. I didn't call him, I wanted to wait until he called. (He knows I am fascinated by all this cancer crap). So, I don't know exactly when and where or what all happened, because he hadn't called. Days go by as Stan doesn't call, and my man left messages for him. When he does call, he is in the hospital , they told him he had two strokes. From chemo or not, they don't know. But then, after that, before I got off the phone from him, he told me he couldn't see!

WhatTF!? So, he said they really didn't say if it would get better, or even if it was the chemo that did it. So, from things I've read, I think he kind of had a massive die-out of all those white blood cells, a cytokin storm, that it is a direct result of Chemotherapy. That so many of the cancer cells died because he was an exceptional responder, a good thing.

But he told me he was having a rough time of it, with his phone, he can't figure out how it works, and he really can't see very well so he has to wait for someone. But he hasn't called for days again, and won't answer his phone! I am really worried about him, and I didn't know that chemo could cause strokes or blindness. I never put two and two together,wow. It was rituxumab, a monoclonal anti-body. (Mab)

And now I hear tamoxifen can give cataracts? I better go get my eyes tested.

Hello all, I had noticed a change I my eyes about the end of my AC part of Chemo that would have been around December 1, 2014. I finished my chemo in February and saw my eye doctor in April 2015 who confirmed I had medically induced cataracts from steroids I had taken during Chemo. He stated that I would have gotten cataracts in time naturally the steroids just made it happen about 10 years sooner. I'm sure because I took steroids in my 20's for harding of the lungs that didn't help either. I waited for 6 months after chemo before doing the first eye and had the other eye in October. I was awake talking to them it is the easiest thing I've done since my diagnosis and I can see tons better it was like looking through a smokey haze all the time before the surgery.

there is a very valuable research project in Metastatic Breast Cancer that is already producing results. You mut sign in to get involved but these few stats were on Twitter. Thought they were interesting. Te more women who get involved, the more accurate and informative the data will be. Right now it's a relatively small sample.

https://www.mbcproject.org/