Starting Chemo March 2015

so-she-did

Glad you are taking care of yourself, Katy. Snuggle in and feel better.

slothabouttown

Katy, I sure hope you get some relief. I really feel for you with the mastectomy pain and wonder if you've been able to get to the bottom of it. I am 90 days out from my surgery and I still have the constant tightness. I do lots of stretching and PT/scar massage and every week I notice improvement in my comfort and range of movement. That scar tissue fibrosis has to be broken up or it can make you miserable, I wonder if that's what you're experiencing? And the MLD is the stuff of miracles. Maybe you could check some videos out on YouTube for some MLD techniques that would help you? There has to be some respite out there.

Jackbirdie

the scar mgmt work lately has been making a difference. The improvement is minute and slow but there.

I think what happens is the chemo and/or Neulasta sort of triggers a flare of pain everywhere. I'm just so tired of being in so much pain. I do try very hard to distract myself and look for "happy" but sometimes it's much more challenging. Today is one of those days.

I have done some Youtube surfing on MLD and carefully trying some. I know it is so important stuff gets done in the right order.

SueH58

TerryMate - so sorry for your horrid SEs. What regimen are you on?

eheinrich

I hate to bad mouth coconut oil but I've been using it the past few days under my nose and down around to my chin because it's been dry from blowing my nose every 2 seconds. This morning I woke up with a red slightly bumpy rash in the shape of a goatee. It's really really attractive.

Italychick

Oh crap about the goatee! Im so sorry, feel bad because I recommended it. My one granddaughter reacts to coconut oil, so I can't put it on her. But the other two grandkids do great on it. Maybe some aloe Vera juice?

My husband had to come get me this afternoon, I couldn't finish my bike ride. 😢. And now I sit in the bathroom, guts all messed up. I guess these next two rounds are gonna be tough. My daughter told me get Maalox and take it for the stomach issues. But I'm still not convinced it is a chemo issue, and that I haven't gotten this stupid intestinal thing that everybody at work has. I will be fine, and then suddenly sharp stomach pain, then it goes away. I hate feeling panicky, not knowing if I am having a chemo effect or if it is related to other illnesses in my work office.

Jackbirdie

oh dear, Eileen! If you had to have a goatee, why not on the day MIL was there? Hope it clears up quickly.

Theresa- I know that must have been a tough phone call to make. I'm sure you'll be back in the saddle in a jiffy. 😪😡

eheinrich

The coconut oil works everywhere else just not on my face. I slather it on my head hands and arms during evening tv time. My cat likes to lick it off of my arms and head - hasn't hurt her yet (although I only let her do it until I get grossed out so she doesn't get much).

Feel better, Theresa.

Italychick

I am so depressed right now, I have never had to walk my bike up a hill, ever. Even when I was fatter. So tonight I am gonna have a pity party, and then tomorrow I'm going to get mad. And I guess pick a ride with less hills, that's all I can do. I'm not gonna let this bitch take away the things I enjoy doing.

I just hope it is a stomach flu thing, and not my digestive system falling apart. I guess I can talk to the MO when I see her on Friday if stuff is still feeling off.

Sorry for the whining. I know most of you out there are going through way worse stuff than I am right now. Tomorrow no more complaints. Just glad you are all here to hold my hand. My friend Cheryl and my boss Ben are supportive, but they just don't understand the fear. Will I ever have my life back?

Jackbirdie

oh Theresa, I am so sorry. Please don't worry about complaining. You never do. And besides, everybody's pain and fear is relative to them. They cannot be compared. I'm just so sorry that this happened today. You are on the downhill stretch. And I believe I can say we are all holding your hand right now. You are gonna getthere. And soon. And you will have your life back.

eheinrich

NEVER apologize for bitching/complaining/whining/telling it like it is on here. You have been officially reprimanded.

Italychick

thanks to both of you, what would I do otherwise?

On a lighter note, my daughter decided to try bowling tonight with her husband. Said she was sucking, and asked me for pointers, so I gave her some. And she threw three strikes in a row lol! So now her husband wants her off chat with me. Go figure

Jackbirdie

3 strikes in a row! A Turkey! My brother (rip dear Peter) was a PBA bowler.

Atta girl Theresa

so-she-did

Hit the wrong button and just lost what I was writing. Here's the gist. Theresa - sorry you had to cut your ride short but you'll be back and as strong as ever when this is all over. You've inspired me to start looking at bikes. I have an old mountain bike that has seen better days (left outside all the time and chewed on by a puppy) and want to maybe get a hybrid with a decently light frame (at least not heavy steel).

slothabouttown

Theresa, my treatment last week kicked my ass sideways. It was the first time I really felt like the chemo had control of me and not the other way around. I think that's the cumulative effect they talk about and may be whats getting you. It sucks to feel hit harder each time and to take longer to get back on your feet. It also sucks that we can't tell whether we feel like shit because of chemo or a flu bug or some horrible other cancer...it feels like nothing will just be that simple anymore.

Just remember that this chemo is temporary. And gets more temporary every day as we get closer to the finish, right? Nothing's gonna keep you off that bike for long.

wpmoon

Katy - I hope the pain lets up for you soon! do whatever you can to take care of YOU.

Theresa - I'm so sorry you had to make that phone call today. But keep riding! You're our inspiration.

I dragged myself out of bed today to go to that yoga class for cancer patients. It was so relaxing! I'll be going back again and trying other classes they offer.

The Look Good Feel Better class I went to tonight, however, was not so great, in my opinion. I was really put off by the guy who was the "host". He kept advocating for shaving your head immediately and buying a wig (no doubt because he owns a salon that sells wigs). When I mentioned that I was using cold caps, and I'm past infusion #4, with about 75-80% of my hair left, he goes "Well, there's pros and cons to cold caps." And I know that doesn't necessarily sound bad, but the way he said it, it was like he was insinuating that I made the wrong choice. That because I chose to use cold caps, my cancer would come back. I don't know .. he just rubbed me the wrong way. The rest of the class was okay - but I could've benefited more from it earlier on in treatment. I have a lot of answers to questions that were asked thanks to this board! I guess the take away was that at least I was able to give advice to the other women there. And I got free makeup.

I agree that this last round is hitting me harder. It's a week post infusion, and I'm still pretty sore and tired. I don't feel like I've slept in days.

wpmoon

Just read this from the article posted on the front page of the BCO website:

"Breast cancer in women younger than 40 isn't common -- about 7% of all breast cancer in the United States is diagnosed in women in this age group. Still, breast cancer diagnosed in younger women is likely to be more aggressive or metastatic at diagnosis and women in this age group have worse survival compared to older women."

Great. So I guess I will die young? Thanks for that comforting news.

Italychick

wpmoon, shame on him! Chemo doesn't cross the blood brain barrier, so I'm not entirely sure I believe that by cold capping you expose yourself to brain cancer which is what he seems to be implying. The brain has a protective membrane around it that I believe doesn't allow chemo compounds in. Every story I have read here about brain cancer ends in excision or radiation. So I don't see how the cold caps interfere with chemo since the chemo doesn't get in the brain anyways. Don't you just hate the people out to make a buck from this horrible disease?

Slothabouttown, thank you for your kind words. I want to believe I have the stomach flu, but the reality is my legs feel very heavy, and I think that is a common thing with chemo. But never fear, Cheryl texted me and she has found a much flatter ride we will do for the next six weeks or so. I am thankful for her everyday for being thoughtful and sticking with me through this process. You hit the nail on the head I think. I definitely am not in control right now, chemo has all the control. But one day it will be over.

So-she-did, thank you also for your kind words. I know you totally get it. Part of my issue right now is I could have done four rounds of Taxotere/cytoxan, or six rounds of Taxotere/Carboplatin/Herceptin because I was on a very narrow edge with my her receptors. The MO left it up to me, but said if it were her, she would do the Herceptin protocol. So it doesn't make it easier that if I had done just TC I would be done with chemo right now. But I made the decision based on what I thought would work best. No going back now.

Thank you again all you wonderful ladies. You are a joy to know!

shaz101

sueh ... Its the anti nausea drug they give me before chemo that they think was triggering my migraines. They reduced the amount and extended the dexamethasone for 2 more days. So far I'm much better. Only 2 migraines in a week and nowhere near as severe.

The extra Dex though has caused total exhaustion and anxiety. But I prefer that to the pain 😁

Jackbirdie

Whitney-that was just horrible how that guy at lgfb was. Shame on him! I would say something to the organizers. I'm so glad you liked the new yoga class !!! That is going to be great for you. And yeah/ in what way exactly are recommended articles like that supposed to help you ?

Hi Shaz! Middle of the night here. So glad you continue to have some relief from the pain. It's too bad there's a trade off with other SEs but overall it must feel kind of good that they finally put their heads together and came up with something!

I had a truly rotten day yesterday. Now I've gotten what I have gotten every round, a swollen glands flu like thing. But it's much worse this time with a strep like sore throat and head and earcongestion. So my nose is dripping constantly and when I tried to blow it I got the cracking painful ears. Ugh. No fever though.

It seems #3 was twice as hard as 2. And #4 is twice as hard as #3.

Jackbirdie

and I believe we have a birthday today?

HAPPY BIRTHDAY ALLISON!!!!!! (Trvler)

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂🎂

You are such a wonderful active member of the group. Always so supportive. Thank you for being you!!!!!!!

Beachbum1023

Good Morning Ladies, I wanted to drop in and send you healing wishes. Chemo is cumulative and while harder each infusion it does end! Take good care of yourself, a little pampering goes a long way. I hope you feel better soon, and this will be behind you. Have a good day.

Trvler

Oh, thank you, Katy!

WP: I am sorry that A-hole said that to you about cold capping. I have no doubt there would be people who would try to make a buck off cancer, just like everywhere else. You want to think that people would be above all of that.

Theresa: EVERY single day that I work out I think of you. You push me. So thank you. I know there will come a day I can't work out. I understand how you feel. You will get it back because you want it so badly.

Sharon: I am so happy you were able to figure out what the trigger was.

ninjamary

Whitney - that guy was an asshole! I still haven't attended my LGFB meeting yet. They didn't inform me of the program until April. At this point it seems pointless to even go, but I want my free make-up.

Katy - I hope you feel better soon. That's the thing I hate about chemo. You get through the first round and think this isn't that bad and then every round after that gets worse and worse.

Sharon - glad you are feeling better. It's about time they figured something out for you.

Allison - Happy birthday! Hope it's fantastic!

wpmoon

happy birthday Allison! 🎉🎁🎈🎂

Ninjamary - the free makeup was the only upside to the class, but even that got screwed up. When I scheduled it over the phone, the guy convinced me to go with the medium bag. The foundation I got was too dark, and I couldn't trade it in for the light bag because they'd already opened the other one. Oh well. I just bought new foundation anyway. I tried to go earlier on in treatment but the ones close to me kept falling on infusion days.

I can't sleep. I agree - this round has been much harder to recover from. I don't have high hopes for #5 & 6. So ready to have my life back.

slothabouttown

Whitney, it seems like every journal article or research piece out there points to higher mortality, increased recurrence etc etc with whatever diagnosis you've been dealt. I had to stop looking. I feel like there will be a day when I will want to learn more about this but as they said in Lord of the Rings "Today is not that day!" I seem to have a filter that focuses right on the poor prognosis when I read these articles and until I can get a handle on that I've had to steer clear, even on this site.

I have two friends who are young survivors -both diagnosed before they were thirty. They are 50 now and have been cancer free since their first incident. They have both reached out to reconnect with me and made a point to visit and offer support. Both have said that it took awhile but now cancer is something they rarely think about. They are both part of the Young Survivors Network or something similar that you might want to check out, they have conferences and other programs especially for women under 40.

Carrie37

Happy Birthday Allison! 💐🎉🎁🎂

Whitney, I read that article on the front page and got totally depressed too. At was not at all a cheerful article! It sounds like you and I were having some ofthe same thoughts.

molly1976

Thank you for sharing that about your young survivor friends, slothabouttown. I'm 38 and in my worst moments feel pretty certain this is going to be the thing that kills me.

BBwithBC45

Trvler - Happy Birthday wishes are going your way.

Wpmoon - If my MO had even hinted that cold-capping could have any harmful effects and lead to any kind of mets, I wouldn't have done it. Cold caps obviously are not good for this guy's business and it's a shame he brought this to the LGFB session. I wasn't all that impressed with my LGFB program either, but at least nobody made such insensitive remarks, and the free makeup was nice.

Italychick

Happy birthday Allison! And thank you for your sweet words. They mean a lot.