Re: Need input, KADCYLA or TAS116?
 

SCG

Good luck with the Kadcycla as Pam said. I have a suggestion for you since you tend to get jittery and anxious. It may sound odd. I spend a lot of time studying old books on Homeopathic medicine. There is a form of homeopathy developed in the 1920s known as Bach Flower remedies. There are 38 of them. Ive tried them and they do work. It may be a placebo effect but who cares? If taking them daily relieves a form of psychological stress it isnt important to me whether the cause is "real" or placebo.

There is a book you can buy on Amazon called " The New Bach Flower remedies" by Dietmar Kramer. In this book he will describe a remedy and put part of his description in the following manner:

People who need red Chestnut remedy say about themselves:

1. I always worry about others

2. If my daughter is 2 hours late getting home I start to panic.

3. Sometimes I worry so much about my family I cant sleep at night

etc etc. Red Chestnut is the remedy for people who worry excessively about the well being of others.

The kind of anxiety you describe sounds like Aspen (generalized) and Mimulus (specific fears). I know this sounds odd comiing from a supposedly sccientific pharmacist but I dont care. These Bach remedies have been aroumd for over 80 years and people still buy them. That should tell you something. You can take these remedies with other meds and they wont interact. Kramers book tells you how to make up the remedy from the stock flower essence and you can buy anything you need from Amazon or health food stores. Just a suggestion.

Paul

Re: Need input, KADCYLA or TAS116?
 

Fingers crossed for Monday, Flori! Will pray it goes without any hitches or weird reactions and the infusion time flies by! Please let us know how it went. Guessing it feels good just to have made a decision and to have a PLAN!!!

Re: Need input, KADCYLA or TAS116?
 

Oh, you got your book signed and an awkward hug is still a hug!

Flori, you can do this. I know you can do this and it will be OK. I'll be thinking of you and worrying for you, it's not far out of the way. Monday is my scan day. I will be captive at the hospital from 10a to 4p. Message me if you get terribly bored.

Re: Need input, KADCYLA or TAS116?
 

Hi Flori, I hope your anxiety has calmed. I thought I would let you know I just had my second dose of Kadcyla yesterday, and share my experience.

The first dose did knock me around for a few days, and reminded me of the first couple of days of any chemo. I had a low grade headache as well, and some nausea, all managed with anti nausea drugs and paracetamol. I felt good by the third day, but did develop a high temperature late in the day, which I controlled with cool packs, ibuprofen, fluids etc. (Oncologist said that was just a new drug regime affecting my system, and not neutropenia). And then I felt quite tired for a week, and then felt great for the final week.

Last night and today after second infusion I feel fine - no nausea, no headache, just a bit weary. And my bloods were fine for the second infusion, and very interestingly my CA153 dropped 10% since first infusion (from 426 to 387), which was very encouraging.

All the very best for Monday. Cheers Marie

Re: Need input, KADCYLA or TAS116?
 

I have a friend who has been on Kadcyla for at least 6 months. She was originally dx stage 3. Treated with chemo surgery radiation and herceptin. 1 year later more breast cancer. She tolerates Kadcyla very well and is able to lead a very busy life. I hope it goes well for you too! Sending love and support!

Re: Need input, KADCYLA or TAS116?
 

Hi Flori,

Hope all went well yesterday.

Regards,

Juls

Re: Need input, KADCYLA or TAS116?
 

I hope you tolerated your treatment well. Just wanted you to know that I am thinking about you. Gentle hugs

Re: Need input, KADCYLA or TAS116?
 

Hi Flori,

I'm thinking of you too and sending positive thoughts your way.

As a side note, since I have been on the Kadcyla, as opposed to the Herceptin and Perjeta, my heart function has actually improved. Just had a MUGA scan today, and ejection fraction was 71%. When on the H & P, I was down around the high 50's to low 60's.

So hoping this will be a good drug for you too.

Kim

Re: Need input, KADCYLA or TAS116?
 

Checking in on ya, Flori. Hoping your infusion went well and you are feeling good!

Re: Need input, KADCYLA or TAS116?
 

Hi lovely people,
I got thru the 6 hour slow drip kadcyla on Monday without incident, thankfully!
Had low grade nausea and a medium grade headache for the first couple days. Then quite a bit of stomach pain along with a reflux attack that was brutal. Then ran a fever last night. Today has been okay, fever mostly gone or better with Tylenol. Reflux okay with Prevacid, although I have a good amount of stomach pain for no apparent reason - can be a side effect of Prevacid, go figure. More than anything, I am reminded of being back on chemo, and it is triggering a bit of PTSD. I've been mostly home, isolated and feeling down. Alternating between rage and self pity. Grieving again. Eh and Bleh. Hard to believe I'm back to feeling crappy like this and of course, hoping that the next round is a bit easier.
Thanks for all the encouragement, care and words of wisdom.
xoxo Flori

Re: Need input, KADCYLA or TAS116?
 

Good to hear from you Flori - wow 6 hours - will it be 6 hours every time? If you read my post above, you'll see the side effects of my first treatment of Kadcyla seems similar to you, but the second treatment was so much easier. I'm getting heartburn, and my tummy region also feels uncomfortable. So based on 2 of us, maybe it's normal?? So hopefully it will be easier soon, and then easier to enjoy other things in life.
Best wishes, Marie

Re: Need input, KADCYLA or TAS116?
 

Flori,

I recall my Onc telling me that the first infusion of any given chemo is usually the worst in terms of reactions. I had mucositis, not just orally, but of my entire mucous membrane which made breathing a bit difficult. Apparently I should have called her about this, but since I figured it was expected I did not. The steroids must have kept me open enough as i am clearly still here. She commented that my next infusion should not produce the reaction and admonished me to CALL her if it did. It did not. Mucositis can cause stomach pain, so hoping this is the cause and you will be free of the issue with your next infusion.

The whole chemo excursion must be a major head-game and I think your associated depression is very understandable. Sloughing through treatment again with no promised end in sight is discouraging. However, I am confident that you will get your legs under you and figure out how to manage the newest challenge. How exactly you will do that I really do not know. I guess it boils down to my belief that you are strong and determined to fight to kick cancer's ass if for no other reason than it pisses you off that it deigns to mess with you. You have guts, Flori. Seriously, you have guts. I stand in awe of you. Fight on, my friend and may this journey get easier as you go forward!