TRIPLE POSITIVE GROUP

SpecialK

tomboy - hi to you too!

ttfan - yay

Tresjoli2

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!

Tesla

Interesting to see different effects of clonidine.

we use clonidine in anesthesia setting occasionally. it's known for antihepertensive activity and also analgesic and sedation effect.

We use it sometimes in labor epidural to control labor pain. Not sure about increasing energy level. Again, everyone's experiences aredifferent and that's the beauty of medicine I guess!!

SpecialK

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

Tesla, I think you picked the very best name of all! I am curious as to why, but it sure made me smile to be reminded of a great and curious man. Can you tell me more about nerve blocks? I am waiting for that pain doc's office to call and set up an appointment for two separate shots for me, but I would really like to know more. I am really afraid of them, having heard that you can have long-lasting problems from them, and also, there was just something on the news again the other night, that said the food and drug administration is looking into "pain shots", because they are not found to be especially affected.(edited to say 'effective') Then they went on to show several people, who wished they had never done them, because it actually made things worse, and they said they wished they had never done them. I am just a little freaked out. His office keeps calling, but they can't really answer my questions. I had told him I would like to wait until we met for the second time, in December. I guess I am a scaredy-cat.

SpecialK

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

Tesla

Tomboy, glad you like the name Tesla (it's my 3.5 months lab puppy's name)

About nerve block, I can't find which post I did talked about nerve block. I had hard time navigate my own posts. Somehow I find Facebook is easier to track the postings!!

Please let me know. maybe there is some setting I need to modify.

Tomboy

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.

Tresjoli2

thanks specialk, I will. I has stopped taking my gabapentin. I wonder if it will help. My feet are really hurting me

KateB79

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.

JerseyGirl22

KateB79, I had the hip and lower back pain starting in round 4, even with taking the Claritin. My doc just said to take Tylenol. It only lasted a couple of days though...

SpecialK

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

LindaKR

My 5th treatment was my worst for side effects, funny I would have thought that the 6th would have been worse but just knowing that it was over made it easier, I guess?

RobinLK

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.

LindaKR

My breast pathology metastasis lymph nodes, but it wasn't considered metastatic disease aka stage 4

SpecialK

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

SusanHG123

Ok. Need some help or something. Went to my eye doc Monday-vision has really changed. Big cataracts in both eyes. Did a quick google search with chemo and cataracts. Yep. Found relationships.

Anyone here with this new-to-me pile of crappola? Or-will this be another windy road of rare and unusual side-effects. I cannot get into a consult until early January locally. My eye doc did not mention a link to chemo. I did have steroids with chemo--but have not dug deep enough to see how much steroid is enough to lead to cataracts.

My Great Grandmother Thornberry had cataracts when she was about 982 years old.

Now I won't see well enough to smack anyone or see the cabana boys. Guess I will have to resort to touch.....

Much love

Tomboy

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.

RobinLK

Thank you for the replies!

Cataracts are a known SE of tamoxifen. Luckily it has not caused any rapid growth of my existing "baby" cataracts.

Outdoorswoman

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.

LindaKR

Aromatase inhibitors increase our risk of cataracts too - so far I'm good!

ashla

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/

ashla

Trying to post dome very interesting stats from The Metastatic Breast Cancer Project, a very valuable research project . The only way I could manage was by capturing screenshots from Twitter. You have to register and log in to access it otherwise.

Having trouble inserting them.

https://www.mbcproject.org

Tomboy

Ashla, everything okay?

ashla

Aww how sweet of you to ask Tomboy.

I was trying to post some fascinating data posted on Twitter by the Metastatic Breast Cancer Project but was having lots of trouble. I believe this is a wonderful effort that is starting some serious so far observational research where we need it most....metastatic breast cancer. It is a project that encourages patients, doctors, scientists and other health professionals to share information on metas tic disease. Patients are asked to share their tumor samples as well.

It is relatively new and I believe has less than 1000 patient participants but the data is fascinating. If you are on Twitter you can see the tweets from this afternoon.

I hope you are well Tomboy. Just started tamoxifen every other day . In two weeks I go daily. For me..these hormone treatments have been the worst. If it were men given this stuff with all these symptoms...you would have had a new med developed years ago..

Wish I could share info. Be well:) @MBC_Project #MBCProject

.https://www.mbcproject.org

Suladog

TTfan,

Congrats!!!!!! I am so grateful for all the help and encouragement you gave me before I started. Can't believe it's all over and that you are done!! I can't wait til mine goes too. Final H on Dec 11 port out 14th I'm not wasting any time either. Hope you and the family have a great holiday season.

demarie

Hi all, I am recently diagnosed triple positive 12 days ago in fact. My surgery is going to be in the next 2-3 weeks (tentatively). I am meeting my mo for the first time on Monday. Still in shock but I have accepted this bump in the road and I am more than ready to get things moving.

Is there anyone just getting ready to start treatment here who is also triple +? Just looking for someone to connect with who is going to be starting this journey at the same time.

KateB79

Hi demarie . . . You're in the right place. This board is incredible.

I didn't just start, but I'm a relative newbie. I had surgery (a UMX) in July; my chemo started in August (and ends after this coming Wednesday!). I'll continue with Herceptin for a year, have the prophylactic MX on the other side, and then start on Tamoxifen. I'm happy to answer any questions you might have.

Hang in there. Remember: it's doable. Truly.

ElaineTherese

Hi demarie!

Sorry you had to join us. I'm (finally!) finishing my year of Herceptin in three weeks. If you're looking for someone who is going through treatment along with you, you may want to join (start?) a December surgery board. After that, if you're doing chemo and/or radiation, there are typically chemo boards (starting in month X) and seasonal radiation boards.

MO might want to know whether you want to do chemo prior to surgery. Hope your appointment goes well!

lago

Hi all Sorry I've been MIA. very busy working 2 jobs

Eyesight. Yes mine changed after chemo. I highly recommend you wait at least a month after chemo before changing your prescription. Initially they said I was losing my distance sight. Waited a month and it was back to normal but my close up did change. I needed a stronger lens but my astigmatism went away. Also have dry eye which has now stablized but made worse with some of the meds we take. I just use OTC drops 2X a day.