Starting Chemo March 2015

Diane D, I was told at the LGFB session that we shouldn't use false eyelashes during chemo due to irritation/sensitivity issues. I have not idea what I'll do once my eyelashes fall out. I don't see how using just the eyeliner will do much for my look.

hi all

Ninja, I hope you feel better. Venting always helps my Irish -Italian self. And I sure have been doing a lot of that past few months.

Italychick, I am all over my PS every visit. Lol. He says I am very low risk for LE, but wants me to go easy. So I got the ok for the stationary 2 weeks ago, gonna try for the Spin this week. Lol. I Know how much thise endorphins do for me. He doesnt want me doing the NYC bike Tour (40mile) in may cuz he thinks toomuch danger of falling off. Ugh. I did it pAst 2 years, and if weather is good , I would really like to go. Anyway, thanks for the push... And I think you will be fine after round 3. I think the riding does u so much good.

Feel good today

Arlene

greenae - how do they know you're low risk for LE? I thought they couldn't predict. I'm not arguing, I'm just curious because I'll be having surgery in August and I want to know if there is some way they can actually predict risk!

Bekah

Arlene, I got the same argument from my breast surgeon about worrying about me falling on my bike. Heck, I can fall down walking on the sidewalk, so I didn't feel that, for me, she was making a very persuasive argument. I mean, I can't give everything up in my life.

SueH58, LE is lymphedema, which is swelling of arm, breast or trunk associated with lymph node removal or radiation. From what I have been able to find out, it can hit right after surgery or be delayed and show up later on. I was at a doctor's office about a month ago and this poor 78 year old woman was in there for lymphedema, and her swollen arm was twice the size of the other one. She said she couldn't even use that arm. Scared me pretty bad. One school of thought is to go to a lymphedema therapist right after surgery to minimize the chance of it occurring.

e - I've heard that too, but then I've also heard you can get LE with only one node removed. Or even just with significant trauma to the lymph system like a massive contusion to the armpit or something like that. But I suppose it would be lower with fewer nodes removed. It depends on how gentle they are with the lymph channels when they are scraping out our killer breast tissue.

I guess you just have to look at what offers the LOWEST risk profile. It all sucks and the surgery/post-op complications is another shit sandwich we get to look forward to (or some of us are already dealing with!)...

Bekah

Hi all

The risk for LE with any lymph node removal is 5 to 17%, and it can occur ANY time after surgery. Ugh, even years and years later. I had my Onco BS set me up with an LE PT eval at NYU...I am still waiting for the appt. date. My PS is the one who said, "You're not going to get LE." And I for once, decided to listen and Go with that! (lol, I am not known to be the most positive person on earth. Heh...just look at me...Triple negative BC.) I don't know why he said that, or is so sure...I just want to believe something Good!

Theresa, I figured out another reason why they don't want me in Spin. The room is small, dark, and HOT. Germs/bacteria from others flying all around. Should I ask to try with a mask on? I think that would suck, tho, I work up a huge sweat, and a mask would drive me nuts, plus I need my water. But I sure love burning those 700 calories. So, maybe I should just stick to my stationary. It has a resistance knob, and I can crank it up and give myself a class. I am Spin instructor, just not teaching now. Also the jumps could mess with my MX and recon? I just have no patience for what this has done to my life. I will live through hearing about your rides! And when this is done I WILL be back out there. I think after I see the PT, I will feel more comfortable with pushing myself. LE scares the crap outa me! Shit Sandwich, For Sure!

Thank you all for being here!

arlene

Bekah: I think they have to. It's the way they deal.

Arlene: You are awesome!

Ninja: I am sorry. I know how important our exercise is to us. Any chance you have a jazzecise studio nearby?

Call me a rebel.... but no one has even mentioned to me about LE.  I am happily ignoring any thought of it and have been so far keeping up with Crossfit at least 4 days a week since 3 weeks after my lumpectomy and SNB  ... Sticking my fingers in my ears LALALALA!! LOL  I am not letting this sandwich take crossfit from me!!

Hey

Is Katy ok?

My MO said I was medium risk for LE. I think it was because I am overweight/obese. Either that or that they're going to have to take all my lymph nodes on that arm when they do surgery.

Yes, where is Katy today?

Diane, I have had palpitations and tachycardia with both of my chemo rounds so far. It seems to taper as the weeks go on.

Trvler, I have a few meditation apps on my phone that I use to help me sleep. They can be kind of corny, but they have worked about 70% of the time when the steroids are keeping me up. I figure there's no harm. If they don't help me relax enough, I just read and try later.

I had a LE assessment about 3 weeks ago. They took measurements of my arm at 5-8 cm intervals from the wrist to the elbow. A difference of 1-2 cm later will indicate LE. Also, I found out that my right arm (cancer side) is actually about 1.5 cm bigger than my left due to dominant use. I'm glad that I had the assessment. If they looked at those measurements AFTER surgery, they would just assume that I had LE on that side. Insurance covered the assessment, and I'm authorized for PT visits if I want to use them after surgery to regain strength. She also gave me some exercises to help prevent LE, but she said it's a shot in the dark. She is a 7-year 3A survivor, and she has it, but she said that it's manageable, and she wears compression sleeves that help.

My concern is that my ultrasound showed one lymph node that looked a little hard, but they weren't sure if it was due to my traumatic biopsy the week before. The MRI was negative for lymph nodes, but the PET saw "some" that fired at a 3. My BS was going to do a SLB during the mastectomy, but I really want to push for a full removal. With discrepancy between scanning results, we really don't know which/if any lymph nodes are actually involved. If neoadjuvant chemo kills any cancer in the SLN, I don't think we can still say with certainty that there aren't still some cancer cells in my other lymph nodes. I'd rather risk the LE and get everything possible out. Anyone else having conflicting lymph scan results?

I was also wondering where Katy was today.

I think Katy is at 'the spa' today but I've lost track. I'm sure she will check in soon

hello my dears! I am here. I am good.

Just so busy. I started PT again to try to deal with the bmx pain. My range of motion has improved a lot and she was happy with that. So we are moving on to scar management which maybe, hopefully, will get me some relief. I am also going to be evaluated (by someone else-closest LE OT therapist is an hour away) for truncal and/or breast lymphedema. But that's a whole nother ins runaround. I am already feeling it from what she did today.. I am fortunate not to have LE in my lymph node arm, and its a long shot that I have truncal (or breast) LE. But I noted after I started wearing then ace bandage again that they sent me home from the hospital in that compression does give me relief.

So I bought a couple of good compression garments that I am wearing every day for about a week now. It feels like it helps. Since that is the primary treatment for LE, it seems plausible. But I'm going to continue the PT path and see if we can break up some of the lumpy scar tissue and see if I can avoid drug rehab this summer haha.

I am also pleased to announce that the Sisterhood of the Travelling F bracelet program is officially underway.

It's on its way to Diane tomorrow. I thought we'd send it around to anyone that wants a connection during the upcoming year before the reunion next spring. Or, if you cannot come, but want to wear the magic bracelet, please let me or Diane know (since the list will no doubt become a moving target). You will obviously need to divulge your physical address so it can be mailed to you.

It is a simple silver charm type bracelet, not worth a gazillion$$, so don't worry. It has one single charm on it, in honor of, and in solidarity with, NinjaMary. An "F". And that would be a capital F.

If anyone is so moved to add something to it on it's way around the world (at least US, Canada and Australia) feel free. I'm thinking at the reunion we'll all say something about our year and the connection that exists between us, then we will throw it in Lake Arrowhead! HAH! We'll bury it just as we will bury this horrible affliction

To understand what the heck this idea is, you need to watch a movie (or read the book) called The Sisterhood of The Travelling Pants. Then it will make sense.

You all mean the world to me.

Katy