Starting Chemo March 2015

avmom

Sharon, great to hear from you! Im sorry to hear that your migraines have continued to be so severe, but it is wonderful that you have surfaced. I have read about that technique for radiation treatment, when I was preparing for my radiation consultation earlier this week. Luckily, no radiation treatment has been recommended for me, so I'll be done chemotherapy next Tuesday, and I will then be concentrating on recovery to get ready for my contra lateral mastectomy and reconstruction in early September.

When will your radiation treatments start?

Gentle hugs and healing thoughts.

KBeee

Kati, 4 TC has been the standard for a while, but there is a huge clinical trial going on now comparing AC+T to 6 TC which is why some MOs are choosing 6.  4 has not been compared to 6 head to head.  It is worth a good conversation with your MO.  Whatever you decide, just go with it with confidence and do not look back or what if it either way.  I wish someone could do a clinical trial on a crystal ball to make these decisions easier for us.

ksusan

I see my MO at a cancer clinic of a teaching hospital, where she also has a faculty appointment. I've had 4 TC and just asked if she recommended more. She said no. Your mileage may vary.

DavisD

Just chiming in. I think we're all doing the best with the information we have and the MO we've chosen. Sometimes I feel like it's overkill and other times I feel like it's gonna get me no matter what I do. I never entirely trust Oncologists to tell you straight up what they think since dealing with my fathers doc. Never once told him he was dying, just kept treating with no hope of curing or even extending his life more than a month.

Katy, you've done everything you can do. Let's start thinking about the future and living again. I need that badly.

Jackbirdie

Diane- thank you for your chimes! I'm glad you feel well enough to.

All through this shit sandwich I have tried to avoid using words or thinking like my life is on hold. Or on pause, or any other adjective that summarizes that I was not really living during the last six months. I was dxd in mid December and I have not had a pain free day since. I have achieved a worry free day here and there, somehow believing that if tx is successful or not, that I would live MY life during this, perhaps a little more slowly. I have tried to believe that this is part of my life too and it must go on, even during treatment,

I see now, despite my most heroic efforts, (and who was I miss bigmouth, suggesting some time ago that now was not the time to be a hero), that this is largely impossible. Because whatever side effects you have, they remind you every day of your dx, our situations, your life and what you were putting of "to do" or "to fix". My mortality, and how best to spend how ever many days and years I have is often on my mind.

So I want to thank everyone for jumping into to this discussion. There are no easy answers to any of this, and we all come to our decisions different ways. I don't know what I'm going to do except two things. First, just get through the next two weeks, very observantly. Second, I will, though not thinking about it all day, every day, I will jot notes down in my phone whenever I have a question or a doubt, and I will discuss TC #6 on June 18th with my MO. Until then, my priority is to take the best care of myself I can, and try to objectively assess whether any SEs I am having are trending towards a lifetime disability. I realize some of this I may not be able to know until later, but I will observe what I can.

I feel pretty good today. I think the unfortunate pneumonia which forced me to take two strong antibiotics really exacerbated and flared pain all over my body. My other secret remedies seem to be helping.

So again, yes Diane! Here's to getting back to real life! 🍻 (sorry Theresa,I couldn't find an emoticon for either JD, hallucinations or butt cracks, but here's a little something for you. 💩💩💩 💨💨🚽🚴🍸)

Here is Tutti, wishing Tutti (all of you), a great day, minimal SEs, and maximum real life stuffed inbetween visits to the head for cleanup on aisle 1.5!

I apologize if this is a dupe pic. It seemed the appropriate facial expression.

Meme117

Good morning from a cloudy PA

Katy sounds like you're head is on straight and you know what you have to do. Tutti is so frickin adorable.

Molly so nice of that stranger! I'm getting tired of wearing a wig but this peach fuzz stuff looks crazy.

I'm still having SEs after 11 days, I'm so tired but have to push through. Soccer tournament all day wish we luck I don't NEED to use the portapotty.

DavisD

Katy, you as always make so much sense. I'm afraid I've tripped into the rabbit hole and I can't seem to get out. I will try hard to stay positive. As much as I'm grateful my kids aren't young and needy, a part of me misses it terribly. Having someone always want and need you is a feeling I can't describe.

I will keep trying to poke my head out. My best to you all.

My little girls...

eheinrich

Awhile back when my daughter was starting her 2nd year of med school and was completely overwhelmed she started keeping a notebook by her bed. Every night she wrote down 3 good things about her day to remind herself that even if it was a bad day there was something good. She said after doing it for a bit she started noticing good things throughout the day - like walking by the bakery, the smell of that bread has to go in the book tonight, etc.This changed her outlook a bit. I tried this for a bit but was in such a dark place at that time (had just separated, moved into a small apt w/ no yard, so lost) that I was bad at finding even small bits of good. I think I'm going to try it again, maybe with a slant towards not just good things but times when I feel good about myself.

Jackbirdie

Eileen- fantastic inspiring idea. Brava for you for trying again. I'm not worthy.

See me on my knees, bowing?

I'm going to try it too

Italychick

Eileen, we ride past a donut shop and a cake bakery on our bike rides. I practically drool every time. That experience would go in my journal for every bike ride lol, so I can relate to your daughter's bakery entry.

My grandkids save me. Yesterday I said enough of this pity party, so I got them, we had lunch, spent 2 hours at the toy store, then I sat with them at a Coffee Bean and had a leisurely cup of coffee while they played in a lounge area with their new toys. Then we came home and made mud pies lol! They totally center me because every day I have with them is a gift. My daughter was initially told she probably wouldn't be able to have kids, and now she has two miracles, so I never thought I would have them. They hug me and tell me they love me about 15 times every day they are here.

I just want to be here when the girls hit junior high (1 year apart) because I am sure they are going to drag grandma everywhere, shopping, etc. And I will love every stinking minute of it!

Diane, hang in there, thinking of you. Bracelet sitting here and looking at the little bed you put on it, so don't forget people care about you.

DavisD

Eileen-Great suggestion! I give clients the assignment to write three things they are grateful for in a journal when dealing with depression. It is so much easier to guide than to do but I'm going to take your advise and mine and try!

Theresa-You are the coolest Grandma ever and I'm sure your grandkids love having you around and will need you even more when they get to be teenagers. I hope to have grandkids some day. I've thought about adopting but for the last 5 years I've had non stop health and marriage problems...no kind of environment to place a child in. I do still have a lot of love to give.  Thank you for the sweet comment about the bed, it brought tears to my eyes...that's how pathetic I am today,ha!  Hugs to you both

Trvler

You all continue to amaze and inspire me!

Katy: I am so glad you are feeling better today. I love the kitty picture! Take lots of pics. The grow fast. Maybe a video?

I might try the 3 things, too. I think we get our dx and then we get used to it and then treatment starts and we get down thinking about the possible outcomes. I know I do. I have been thinking about the 'cancer free' thing lately, too. I mean, it can be a cell. You can't ever know. I guess if the treatment buys you a bunch more years, it is the best you can hope for.

neverthought

Katy - just wanted to thank you for recommending Pink Ribbons, Inc. Now very pissed, not because I am surprised but because it confirmed a lot of thoughts I've had for years. Who knew that Astra Zeneca both discovered tamoxifen and owns the naming rights to Breast Cancer Awareness month? Is that a conflict of interest? 

Now I'll get off my high horse and admit I've been eating chocolate chip cookies in spite of my heartburn, but felt I had to reward myself for cleaning out my 1970s era refrigerator and freezer, removing the huge glaciers of ice and washing everything down. 

I love that everyone shares pictures of their heads and their pets.  Makes me wish I had a kitten and a better shaped head though.

I ended up with TC x 4 at recommendation of my surgeon, because I couldn't get a port and refused to have a PICC line in for 4 months of chemo.  Was recommended that AC x 4 + T x 4 was better but was too scared to take the A part.  And I do wonder if I did the right thing, but wonder why I got bc in the first place.  No risk factors and a compulsive label reader, mostly vegetarian, who doesn't wear makeup, smoke, drink or dye my hair.  Maybe it was the decaf coffee and tea?  Who know how they get the caffeine out.

Sorry for going on and on - maybe on a sugar rush.

Thank you to everyone for sharing ups, downs and in-betweens.  Wishing everyone a peaceful weekend.

wpmoon

I just looked at pictures from a few months ago - when I had all of my hair, my eyebrows were full, and my eyelashes were thick and long.

I want to cry.

shaz101

Thanks avmom. I'm glad you don't need rads. More surgery is enough to contend with. I don't have a date yet but they said mid to late July. I just want this to me over! I'm sick of being sick. And apparently looking 'good' the weight gain and steroids had made me puffy and ironed out the wrinkles.

rleepac

Neverthought...I remember from a science class (eons ago) that they actually get the caffeine out using Lead!

Sorry...but it's one of those little tid bits of info that I always found fascinating. It's why I never get decaf. I only have 2 or 3 caffeine drinks a week anyway because I'm not a big coffee person but it does make you think...

But...don't beat yourself up about that one because I've never done decaf and I still got BC so let's blame it on some thing else!

Bekah

shaz101

It sounds like we're all going through a down stage. I like Eileens' 3 things! Maybe we could all post 1 thing we are grateful for every time we post. We can still share the crap but it may help balance some of it.

Today I am grateful for my horse, Paige. Even though Andrew feeds him most of the time he still trots over for a pat when he sees me.

As for the crap... right this second there isn't any. And I think I'll try and stay in the moment for now.

Wishing you all a lovely day/ night. Xxx

jumbledbamboo

I am on chemo 4. I am eating too much sugar I am sure. I am loving warm coca cola! But also really bitter foods like spinach and vinegar

eheinrich

Sharon I like your idea of sharing 1 good thing with each post. When the girls were in middle school and complained all the time about anything and everything we would stop them after a bit and say " now tell us 3 good things". they HATED it but complied.

Here's my good thing: i miss my dog so I scheduled a dog play date (I also really wanted to be in a pool) with my pup - she's a swimmer. I had puppy time and Alan invited over our friend who has a 2 yr old so I also had small person time and there was pie. Good day all around.

eheinrich

Those of you with hair coming in, is it the "right" color? Mine is gray with a touch of my reg color.....sad sad sad

Well, I guess I dyed it anyway, but still...

Pu241

rleepac wrote "Neverthought...I remember from a science class (eons ago) that they actually get the caffeine out using Lead!"

This is incorrect, lead was never used to remove caffeine from coffee.

Please see below:

1. Decaffeination 101: Four ways to decaffeinate coffee

ksusan

I didn't lose all of my hair on TC x 4 (though I just had TC #4, so who knows?). I have peach fuzz. It looks brown on top and maybe grey at the sides. We'll see what happens over time, and...

I am grateful to have hair growing out!

eheinrich

Also totally grateful. I can be gray or dye it up, but glad to have it no matter how little there is

ksusan

Indeed!

Jackbirdie

welcome Jumbled Bamboo-Sorry we meet this way,mbut glad to have you all the same.,it is stranfpge eps hat does and doesn't taste good. Best of luck to you in your treatment.

Whitney, you are free to cry of course you've earned it, but you are quite stunning now,moved that last picture of you at the beach.

Jackbirdie

Unfortunately, My day deteriorated rapidly, and I've barely gotten out of bed. I am 2 days post chemo and really feel robbed of my good steroid days.

But Sharon and Eileen, here is my good post thing of the day, also for Allison who asked for more pics. I thought it would take weeks or months to happen, but I woke up with my good boy Jack and little Tutti, both in the bed, sleeping with me. I was totally amazed. I had a much longer time period in mind, but mostly because I Wanted it to happen naturally. The bed is a mess, and hope you can tell Jack is in the foreground and Tutti is up by the headboard.

They both look pretty relaxed. The high point of my day

wpmoon

that just made my day Katy

SueH58

Katy that is so awesome. Just goes to show what a real gentleman Jack is. He's the best.

I'm grateful for the scent of spring lilacs and fresh mowed grass, and for all the family and friends who love me and support me.

rleepac

Thanks PU241 - I stand corrected! My science teacher must have been telling stories!

My hair is coming in mostly dark but some grays on top. About what I had when it fell out so I'm sure I'll go back to using Henna to dye it when it gets long enough.

Bekah

jumbledbamboo

I m curious as to who else is getting taxotere and perjeta without a later stage diagnosis? I am diagnosed as stage IIIB and had different tumors. I am triple positive and my onc did tell me this will likely become the norm for treatment