Kadcyla ‘n me
 

Quick update—-Today is one week post Kadcyla #1 infusion. Tues, Wed Thursday was mostly headache and low level nausea. Friday morning I woke to a horrible reflux attack. I have had pretty good pain thru the whole weekend along w low grade 100d fever. Stomach pain located high up, between ribs, pain, pressure and feels like I can’t get a deep breath but I can. Today I saw my NP, my platelets dumped (from 255) to 74.

AST 255, alt 395, Alk posphate 355. All liver enzymes were low normal a week ago.

Plan is to increase Prevacid and add Zantac to try to calm gastric track and heal pain. I also got some pure aloe Vera (from Whole Foods) an ounce 3x a day can be very soothing. (That’s a throw back OMD trick from chemo 23 years ago).
My NP said I’m very sensitive to Kadcyla. Yes, my thoughts exactly with more four letter words. And, Yes, I’m kinda freaked out.
Xxx Flori

Re: Kadcyla ‘n me
 

Hi Flori

Fingers crossed it gets easier.

Juls

Re: Kadcyla ‘n me
 

Ah Flori - looks like nothing is ever easy! Have heard the SE's settle down after a while and that sometimes it can cause a flare-up, ( as can many new treatments). Soldier on - not much choice really, and let's hope it all settles down.
Best wishes..... Pam

Re: Kadcyla ‘n me
 

My focus is back to one moment/day at a time. And maybe finding out if there’s something I can do to help my liver enzymes return to normal. ❤️❤️❤️

Re: Kadcyla ‘n me
 

SCG

Milk Thistle might help. It contains Silymarins which may help the liver recover from toxicity.

Re: Kadcyla ‘n me
 

Drink lots of water too. Flush out all the crapola

Re: Kadcyla ‘n me
 

I'm sorry to hear that you are having any difficulty with Kadcyla. I pray you acquire a tolerance for it so you can continue to use it. Support that liver and GI tract. XO Tracy

Re: Kadcyla ‘n me
 

I have always loved your signature that you are from La la land. And then when they made a movie about you in La la land, I liked it even more! Bummer to hear about your SE with Kadcyla. I hope more people offer up some remedies to counter all of this pain and discomfort. Hoping that each day the pain subsides more ������

Re: Kadcyla ‘n me
 

Never a dull moment these days...
Before (2/12 my first Kadcyla) and for my whole life, my liver numbers were fine.
After just one Kadcyla infusion my LFTs were CRAZY high!
I had blood work Monday and again today:
Alk Phos from 355 to 251. ALT from 395 to 166. AST from 218 to 106. I don’t know if they’ll even treat me again. Super shocked and more than a little depressed.
I took Tylenol all last week for headaches and fever. Maybe I killed my liver? I don’t drink or rarely, like not even monthly but I do take Tylenol at night one dose.
Good news is my platelets came up in just 4 days from 74 to 198. And very good that stomach pain resolved. Hard not to feel the weight of possible implications from those liver numbers. My onco said this in reply to my email: “If the liver functions continue to be up we need to make sure that isn't from any other cause and if it is from Kadcyla we may have a problem in giving it again”
I guess that means if my liver doesnt improve on its own I’m off Kadcyla after just one round? Sigh. Heavy stuff.

Re: Kadcyla ‘n me
 

Flori,

Tylenol is very hard on the liver and is really best taken once in a blue moon, not with any frequency or certainly regularly. I would toss that crap out and switch to Aleve. Tarte Cherry Extract also helps with pain and is an anti-inflammatory. One thing that really helps reflux symptoms such as yours is to purchase a powdered probiotic. Wegman's has a jar for children that is refrigerated and in powder form to be dissolved in juice or water. It is virtually tasteless. It was recommended to me by a naturalpath to take a 1/4 tsp 3-4 times daily in water. I would even put it in my water bottle that I take up to bed with me for those middle of the night heartburn attacks. This has cured my reflux and heartburn completely. It only returns when I have been off the powder and eat something with turmeric (great cancer fighter, but my gut just cannot manage without probiotic water!). The other helpful hint is to abstain from taking pills less than 2 hours before you lie down at night.

I am sorry to hear Kadcyla is such a bear for your poor body. Maybe that Grizzly will tame itself on subsequent infusions. I agree with Donocco about the Milk Thistle. Good stuff for the liver. Please keep us posted. When is your next infusion scheduled provided they permit you to receive it?

Re: Kadcyla ‘n me
 

That Tylenol is ROUGH on your liver and can also be tough on the tummy. However, it's the only thing (OTC)that works for me for pain so I take it anyway. I hope that by stopping the Tylenol, everything comes back to normal for you.

Re: Kadcyla ‘n me
 

Hi Flori,

Lets hope its a blip and next cycle will be better.

A break or dose reduction might make a difference.

I remember reading on this site that someone said "Kadcyla is a great drug but not without its problems." For some reason that comment has stuck with me.

Its raised bilirubin that is my main problem. I've tried all the suggested things to bring bilirubin down - eating red veg and fruit, extra fluids, barley water, honey, coffee etc.

Unfortunately bilirubin still up and down. AST also up but not considered a problem at the moment.

Now on a dose reduction to see if this helps. (Should know later this week.)

Hope you are feeling better this week.

Juls

Re: Kadcyla ‘n me
 

Hello lovelies,
Going in tomorrow for Kadcyla #2. Dose reduction for grade 2 side effects. Liver enzymes came down to high normal. I'm feeling pretty good, would need a few more days to really gather energy, but trying to stay on 3 week schedule to give this it's best chance to work.

I'd be a liar if I said I feel good about going in tomorrow. I'm so anxious, took a 1 mg Ativan at 9:oo pm and it didn't touch my anxiety. Finally took another half, and at least the gripping feeling in my stomach has backed off. I know it is likely the reaction won't be as bad, along with me being better prepared with aggressive amounts of Prevacid and Zantac, not waiting for reflux attack, will try to preempt. And not expecting to get the stomach flu during the second week, so right there, two big improvements. All that said, and all the "be present, be brave" self talk is doing nada. All I can think about is reasons not to go in.

My kids make my life worth living. My art, my dance community, my friends, my family, the love and connections I've formed over the years - these are the reasons my life is worth fighting for. So that's the practical side. The emotional side is stronger - it's screaming in my head, I DON'T WANT TO FEEL SICK, I DON'T WANT TO DO CHEMO, I DON'T WANT TO DO TREATMENT. I AM SCARED TO DEATH, I AM TIRED OF IT ALL, THE FIGHTING, IT'S TOO MUCH. JUST LEAVE ME BE. LEAVE ME ALONE. I WANT TO STOP TREATMENT". That is the voice I'm fighting and it's fierce and it means what it is saying. I've had a disease for 22 years on and off, the last 10 on "according to the doctors and machines". I've never personally felt or seen this cancer. Yet I must fight it for my life. No wonder I am so sad all the time. It's like a very bad trick, on me.

Re: Kadcyla ‘n me
 

Hi Flori,

Hope all goes well today!

Juls

Re: Kadcyla ‘n me
 

Sending love and support from Australia, Flori!

Re: Kadcyla ‘n me
 

Wishing you all the best to get through this round

Re: Kadcyla ‘n me
 

I was just thinking about you the other day. I hope all went well. Sending positive thoughts and energy your way.

Re: Kadcyla ‘n me
 

The infusion was uneventful, so that's very good and my 6 hour protocol seems to work. I had such bad anxiety the whole time, not the usual for me. I took .25 Ativan about every 2 hours just to keep my stomach unclenched. So far, no fevers, terrible headache every morning in the back of my head at the base. I've never had that and can't figure out why but thankfully it resolves once I get up and get moving. Yesterday I stayed in all day, it was rainy here, no real reason to exert energy. Hoping to get showered and take a small walk when the rain lets up a bit. I don't feel horrible, but definitely feel like I had some chemo. Stomach pain much less with the aggressive dosing of prevacid 30 and Zantac. Hope this crap is working. Thanks for support and kind words it makes such a difference, and honestly I am thrilled to lose an hour today. xoxo

Re: Kadcyla ‘n me
 

Dear Flori - crossing my fingers and toes that the side effects and liver numbers stay within the tolerable range.

Thinking of you

Re: Kadcyla ‘n me
 

So glad to hear this infusion was less wicked than the last. Hope your liver behaves and the indigestion remains at bay! Please keep us posted!

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!