Starting Chemo March 2015

Lovemylab

Allison

I do have a port but the docs assured me that was not the cause of the clots.....they never did give a reason for them. I'm on lovenox shots twice a day now so nothing is clotting anywhere. Someday I will be transitioned to Coumadin for life. Ugg. This all seems like a lot for stage one breast cancer. I need some good news. First I had one small tumor per mamo, then 2 bigger tumors on mastectomy, oh and then they were her2+. Hoping for smoother sailing with taxol/ herceptin. Guess I'm having my own pity party tonight. Sorry.

Maureen

Italychick

Fuck cancer! Katy, tried to get my husband to zoom in on the bracelet. It is on my messed up breast arm.

Still feeling feisty. Wish I could drink some Jack Daniels.

Jackbirdie

Theresa- I could see it! I zoomed at my end. Yes. Fuck cancer most definitely! I'll be starting premeds tonight and don't be surprised to see some feisty posts from me in the middle of the night!

I don't even like JD but in my imagination you and i are throwing back a double together. Then, in my dream, I switch back to tequila. Haha. There's a bowl of guacamole.... just beyond my reach....Fuck Cancer

Jackbirdie

Jack just says.....Fuck That Kitty

SueH58

Katy, I have a black cat that has a white smile on her tummy. We named her Sonrisa, which is smile in Spanish. March in Spanish and Italian is Marzo. Or, the italian word for friendship is amicizia--you could call her Ami. Just some ideas.

Italychick

Katy, I could do tequila too. Although I hallucinate on it and get very deep. Haha.

Italychick

deniseto, have you tried taking magnesium for restless legs?

Jackbirdie

ok Allison-

Here are a couple. She found her 3rd safe haven/hidey hole/ fort all by herself. She had two young girls handling her constantly, so she is very affectionate- but I have to lock Jsck in the car for her to feel safe. To make it up to him,I took him to my friends with acreage tonight. I let him run. I can barely walk. Pain. Neuropathy. Going to slather on the mm again now. Ugh.

slothabouttown

She's a dilute torti, almost certainly female. Adorable.

SueH58

Hey Katy, how 'bout naming her Jill?

Jackbirdie

dilute torti! Oh I should have KNOWN that.. Not. I always have loved regular tortis- she's really something special. The two little girls handled her constantly. She figured out (she's tiny, ya know) how to get up on the bed. I'm just leaving her alone, letting her explore. But she comes to find me. Of all places, she wanted to snuggle on my neck. She inched down til she was laying on my port. Pissed me off I had to move her, but it still is so sensitive...fucking cancer.

Theresa- I would really like to see that! As long as you were safe. But I think we need to not be deep. This effing situation has made too many of us deeper than we should be at our tender ages. Don't you think?

We can talk best bike rides, hair (if we have ours back- though I hate to admit, I am rather enjoying the low maintenance of bald, and it's really not too bad a look on me haha!)

What else? Cookies, nail polish,

How about some of my organic, home-made Limoncello! You and your hubs must have tried that in Italy a time or too. It's crazy expensive to buy here, always imported. I have an Italian grandmother's recipe and it is really good on a hot summer night over ice. You nurse a shot for hours, as it is made with 180 proof grain alcohol. That'll make you hallucinate!

I better bring some of that to our reunion. You keep it in the freezer.

Eileen- Permissiom to commandeer the freezer requested!

Jackbirdie

my neice just suggested Troubadour. Troubl for short. It made me think of Trooper. What we all have been.

Troopie?

I am heading from the mundane to ridiculous I fear.

Jackbirdie

Sue- Beachbum suggested the same thing a few ago in a PM. Jack and Jill, right? Under consideration.

My brother just called and suggesting I name her Poppy after our dear departed brother's childhood kitty he lost and never got over. I would love to honor him this way, but the name isn't gelling for me.

This is hard.

Italychick

Katy, there is a character named Trouble on the series Grimm. I love that name, and she looks like she could certainly be some! I like the spelling as Troubl.

SueH58

oK here's a playful name--Eloise. You could call her Ellie...

Jackbirdie

Sorry I'm such a blabbermouth tonight. I am so nervous about tomorrow.

Ok. about Kitty's name. I wanted something that would have a relation to the cat first of all. To its looks, personality, something. But I also wanted something to honor this group, to recognize this time in my life. I wanted to honor others. Of course, I also wanted to be clever.

In short, I wanted everything.

When Sloth mentioned the type of coloring this cat has, dilute torti, the word torti kind of resonated. I started thinking how kitty's coloring is kind of tutti frutti.

The lightning bolt struck. Tutti is an Italian word, meaning everyone, everything, or all. It is also used widely in music composition and performance to indicate "all are performing"', as opposed to a solo performance. When you see it in your sheet music it is your cue that everybody plays. Now.

It struck me that this is how our group is. Tutti. Everyone plays a part. Everyone in our orchestra of pain and suffering has a special part to play. If even one of us wasn't here, hadn't showed up, the character and nature, the melody, of our daily musings would have been different. And I don't know if we could have gotten through this solo. I know I could not.

It will be pronounced "Toodie" so I don't freak anyone out, seem like a snob, or have to explain for an hour what it means.

What it means is everything.

PS- I also see the shortened word for "attitude" or "tude" in the name. But the final clincher was when I read tutti is an Indian slang word meaning shit. What could be more fitting. The big D. The constipation. The farts you can't trust. In sum, the shit sandwich......

Carrie37

I love it Katy!!

SueH58

Katy, awaking with more ideas:

cazadorita (little hunter )

Mariposa (butterfly)

SueH58

Katy, just read your post. LOVE tutti!!!!!

Lovemylab

Katy

Tutti is perfect....she looks tutti fruiti. Hope she and jack get along.

Maureen

Also this first Taxol seems like a breeze compared to AC. No more diarrhea since day one and feeling good. Will know for sure when decadron is done tomorrow! There is hope.

Trvler

Love: I think they don't want to say it is the port because then somehow they are responsible. I don't know if it has to do with how they port is put in but I got the feeling no one wanted to say the port was causing me any problems. I knew 100% it was the port because the symptoms started immediately when it went it. I may not be a doctor but I know that was no coincidence. Blood thinners for life seems extreme to me. I would question it. Sometimes I think doctors are too zealous with prescriptions. I personally am on the fence still about Tamoxifen. My neighbor opted not to take it due to the risks and suggested I research it as well, which I will when I get to that point.

Jackbirdie

Maureen- So glad the née regimen is is bit more tolerable..

I do agree with Alison/Trvler, I would have someone else look at it. An "uninterested" party. Even if you pay out of pocket for consult. You can't mess around with your heart. Seriously. you need do this. Find your own second opinion doc. Don't accept a referral. call your ins and ask how best to do. They do pay for this.

Wierd things go on with these ports. You, Trvler, Joanna I think, Ninja Mary, who else? And plenty that people just don't report it!. Good little girls: we never complain. You bet they would get a lot more calls if men were getting localized Chemo for prostate or colon cancer.

Just sayin

Leighrh

Katy.... I love that Kitty!!  Wish I could get one but hubs is allergic....

Ok .. Chemo induced crazy question for you ladies......  We all know this shit sandwich is a crap shoot... I talked to my MO this morning about my daunting task of doing this weekly for another 12 weeks and how I really wish  I could just stop now.  I did not have the oncotype test because MD Anderson did not offer to do it because I had 1 node positive, unless I entered a trial, but I am starting to question my stage 2 cancer cells..... It seems that all this poison is directed at fast growing cells..... not moderately growing like mine, so doing all this could be for nothing????  My MO says to just take it week by week and OF COURSE I WILL DO FINE(yada, yada...youre young..yada yada).... but after a cpl of weeks if  I just want to quit ... I can.  My surgery was successful.. got clean margins, I have to do 6 weeks of rads....... Is it CRAZY to even consider quiting if it just becomes to much? Or am I just a big fat whiner?? LOL  I just want my crazy, run around fast, energetic life back!!!!

eheinrich

Chemo targets actively dividing cells, which is why you lose hair, GI cells, etc. Even your slow growing cancer was doing more active division than breast cells should be doing - hence the tumor. If you had a positive node your cancer was trying to spread beyond your breast tissue. Given that, it seems like after already doing so much to get rid of any possible trace of cancer stopping now would be short-sighted. It sucks. It all sucks but this is a crap shoot, some people will have cancer return. If you were to stop now and be rediagnosed you would probably have a hard time justifying having stopped tx to get back to real life and then having to go through tx again.

Normal life will return in time. Hang in there. We are all here with you.

wrmbrownie

Leighrh, I am doing chemo at the same place and also didn't get the oncotype score. I had at least two positives nodes though (haven't had surgery yet) and knew I needed chemo so I didn't ask for it. The Taxol is easier than the A/C. You can do it! I did Taxol first and am going for my third A/C tomorrow there. Hang in there and just think of one week at a time... Good luck!

' 

Italychick

Leighrh, what percentage does chemo give you? Did the MO give you that? Not the chemo reduces recurrence by 30% general statistic, but your specific percentage? So, for example, let's say surgery and rads gives you 85% risk reduction. What does chemo add on top of that? If the MO says 50% risk reduction, is that 50% of 25%, which would be 12.5%. And how much would the chemo you have already done reduce your risk vs. continued treatments? I did chemo because I have no long term drugs, other than Herceptin for a year, but getting some real numbers for your specific risk might help you decide.

The important part for you to figure out is what percentage does more chemo add, and if you forego those treatments, are you comfortable giving up that additional percentage advantage? Only you know that answer, and I for one would never judge what you decide to do.

I have also read that chemo is more effective in grade 3 and for grade 1 it doesn't seem to be as effective, and since I am grade 2, and doing Herceptin for a year, I question what real advantage I have given myself. But I still did the chemo, was too scared not to.

The other scary thing is does chemo only work on circulating tumor cells, but not stem cells? From what I have read, chemo doesn't really target stem cells, they are tough dudes, and those are the cells that are viewed as the more problematic in terms of distant metastasis. So maybe ask the MO about the effect of chemo on circulating tumor cells vs. circulating stem cells. I plan on asking that question as well.

Sorry, I think I may have added more confusion to your situation. If you get any data, please share, it would be valuable

Jackbirdie

good question Theresa:

My oncotype DC score was 30. (Tamoxifen is assumed ) in my case I know that's not an option for you.

Tamoxifen reduced me from 30% to 20% of recurrence. In my case. Chemo only offered sn extra 4-5%. But i was super concerned about how regetful I would feel if I didn't do it and then I had a recurrence.

Also, I asked my onc if it was him with my exact stats, would he do it???

He said yes FOR SURE and would do 6 not 4. But he voted against adriamyacin because of heart issues. He left it up to me and cited the fact that I had HT in The future to rely on. You don't. You have to keep going. Please.

Italychick

Katy, I am doing what they told me to do. And I hate it! I was addressing somebody else's question.

Jackbirdie

Sorry Theresa, my mistake. Forgive me.

Chemo brain.

eheinrich

I will explore the circulation tumor cells vs stem cells question later & report back to the group. I've been in science mode all morning. But now it's time for a movie! Heading out to see San Andreas.