Re: Kadcyla ‘n me
 

Flori - I hope the kadcyla treats you better. You are such a champ, and I would love to have your longevity, but the constant list of drugs, side effects, tests, and recurrences is wearying, even for the strongest woman, and it just has to be acknowledged once in awhile: it sucks. Everything about it. And then, what can we do but carry on? People tell me I'm brave, but I don't feel brave; I feel like I want to live my life for as long as I can, for the reasons that make me happy - family, friends, art, food, doggies. Love. Know that you are not alone, and thank you for sharing your journey, and your knowledge. I will think of you when I have cyberknife on Thursday, and your story, and your words, will give me strength, and will connect us.

Cheers!

Re: Kadcyla ‘n me
 

Glad to hear you stayed on your feet for round two. Looks like round three is in the offing! I think of you often in a positive way, wishing NED to revisit and stick around a while.

Re: Kadcyla ‘n me
 

Thank you Steph. Going in for bloodwork today. Fingers crossed for decent news. Happy spring. I think of you all the time, too! Xoxo

Re: Kadcyla ‘n me
 

Hey, Flori!

How was the labwork? I'm glad to see you on your feet. I must say that I was very worried for you a few days ago. I understand how tough it is to go to treatments. I sit outside the building every three weeks and fight back the tears, that old anxious feeling I would get before school each morning. Lord, I hated school, the social aspect of school---I shouldn't be feeling that now, I am an adult, I can't be bullied. Cancer is a huge bully, one we can't get our hands on, tell off or walk away from. How do you fight that kind of a bully? Why, you poison it; but we are not immune to the effects of the poison are we? Yet, over and over, we subject ourselves to that poison, hoping we can out last the bully.
I'm sorry you were having such anxiety about going in for treatment. I hope your anxiety eases as you do better. I can't wait to find out that Kadcyla is kicking your bully's butt.

Re: Kadcyla ‘n me
 

Well it took 14 days for me to feel okay enough to go out and see friends. Not sure I can hang with this treatment, if only 7 good days and 14 bad. It's not as if I am BOUNCING BACK to normal, but at day 13 I did start to function more like my old self.

Dose reduction helped a lot with side effects and not sending my liver enzymes into orbit, (alk phosphate seemed the most affected) but still the side effects take their toll.

In order of appearance:
2 day headache, 3-4 days upper stomach pain, mild nausea, flu-ish at night 7 days, lower stomach pain 13 days, winded still, exhaustion still, dry cough yes, dry mouth yes, excessive anxiety on and off, heart palps first week, zero energy yes, depression on and off.
The stomach pain and lack of energy prevail. Feels like chemo to me. Not sure if it will get easier, of course I am hoping so. See my doctor on Wednesday. Will find out more about her plan verses mine. Am hoping to stay on this another round or two and then scan. Amazing results results will go a long way but so-so response will likely result in me going off all treatment and just taking whatever time I get for now. Heavy stuff...

Re: Kadcyla ‘n me
 

Flori,

I am so sorry to hear that this is such a hard go for you. It truly sounds miserable and I do not blame you for feeling discouraged. You are right that an amazing scan will stiffen the resolve to keep going with the treatment.

I wish I could make this better for you, Flori. You have contended with so much, always with wit and grace. I admire you, my friend. I will continue to pray this gets easier and that the scan results make this suffering worth it! You have earned yourself a break and I pray you get it!

Re: Kadcyla ‘n me
 

Flori,

I am so sorry ... this all totally sucks. I am praying for an amazing scan for you. And that it gets easier.

Carol Ann

Re: Kadcyla ‘n me
 

Keep strong, Flori!
Wishing all the best for you..... Pam

Re: Kadcyla ‘n me
 

Ugh, Flori. I hate all the side effects, and the fact that we must poison our bodies to (hopefully) knock out the cancer. It makes no intuitive sense. I hope that you're feeling better today, and that there is something else you might try. Is there an immunotherapy trial you could get on?

I'm feeling mostly tired, with mouth and head sores, on the tykerb/haloven combination. Nothing from the cyberknife that I can discern. Finger still numb. Going for a kidney ultrasound today, because I have crystals in my urine that might be kidney stones. Also seeing a neurologist. So many appointments, it's hard to keep track!

I have my fingers crossed for you, Flori. Please let us know how you are doing. Much love.

Re: Kadcyla ‘n me
 

Heavy, heavy stuff, Flori. I'm so sorry that it weighs you down. My prayers are firmly directed at you these days, several times a day. Things will get easier as you adjust, the scans are going to be remarkable. Hold on. the good news is coming.
XO Tracy

Re: Kadcyla ‘n me
 

Hi Flori...praying things are going better than the day you started this thread.

Re: Kadcyla ‘n me
 

Hi Flori,
That sounds really tough. Can't blame you for wanting to discontinue this treatment if the scans are not so great. Still hoping the SE's will subside with subsequent cycles and scans will be great. But if not, we're here for you.

Love
Jacqueline

Re: Kadcyla ‘n me
 

Hey, Flori,

Just popped on to say a quick hello and to let you know I am thinking of you. Hoping you are feeling a bit perkier!

Re: Kadcyla ‘n me
 

Many people have you in their best and most positive thoughts, Miss Flori.

Understand you are not your usual self under this current treatment, but looking in for any better news.

Know you are enjoying the "good" days and making the best from a crummy situation. Your body will know what to do.

Re: Kadcyla ‘n me
 

Like others have said, I'm thinking about you and hope things get better with each treatment!

Re: Kadcyla ‘n me
 

Flori, I haven't seen much of you lately, not here and not on FB. I hope you are busy kickin' up your heels. Be well, friend.

XO Tracy

Re: Kadcyla ‘n me
 

Hi lovelies,
Thanks for all the good words and checking on me. Have to make this a long story short for right now...
I did another Kadcyla dose reduction on Monday, round #3. I also added some prednisone on Tuesday, Wed and today - 10 mg a day. So far, so good. I've been buzzing around a fair amount and even felt like my old OLD self this morning. I can feel my energy lowering, but it's almost 5:00. This is a zillion times better than the stomach pain, and deep dark depression. Hoping not to crash too hard tomorrow - steroids are a double edge sword.
Taking it day at a time and so far this would be do-able. Next steps will be blood draw on Monday to check liver and platelets. And markers in a couple weeks to decide on PETct or another cycle. So much gratitude to this board, and your support. Hope everyone is "good enough" or better.
<3 <3 <3
Flori

Re: Kadcyla ‘n me
 

Relieved to hear from you, glad that this cycle is better, praying no steroid crash and good labs. Stay well.

Re: Kadcyla ‘n me
 

So glad to hear from you Flori, and that its going better, YAY!!!

Keeping my fingers crossed it continues this way for you!

Carol Ann

Re: Kadcyla ‘n me
 

So good to hear from you, Flori, and to hear that your latest Kadcyla treatment was a little easier.

My latest CT scan of my lungs shows smaller lesions, which means the Haloven is working. I have a brain MRI on the 16th of April, when we'll see if cyberknife did anything, and if chemo and Tykerb are keeping smaller brain mets at bay. Crossed fingers all around!