Re: kadcyla side effects
 

If I understood my oncologist correctly, and if I'm reading the info on the internet correctly, I believe it's just for BRCA1/2, but I'm not the sharpest tool in the shed, so I could be wrong. When I was on the trial, there was no herceptin, but yet I had 8 months of regression, so Dr Domchek is pretty sure I'm herceptin-resistant and there's something else driving my cancer (I'm ER-/PR-), most likely the genetic mutation BRCA2 that I have.

Hopefully someone smarter than me comes along with more explanations.

:-) Penny

Re: kadcyla side effects
 

Penny,
My headaches do seem to be localized. Mainly top of head to forehead but not really to sinuses. Good luck with the zofran. Another side effect happens to be headaches but I haven't noticed them from the zofran. Hope it helps. Let me know how you're doing. Praying we all get lots of time from this.
Cathy

Re: kadcyla side effects
 

I have had my third dose now, but minimal headaches this time, but in place of that I have a buzzing feeling down forearm and hand, which I assume is neuropathy? I had numbness and tingling whilst on Abraxane, and that totally resolved once I had stopped Abraxane, does anyone know if it is permanent with Kadcyla? The other thing I have his time is heartburn.

First scans since starting coming up in two weeks, so I have my fingers crossed for good results. Abraxane got me to NED, so I am expecting nothing less from this treatment! Lol

Dawn. Xxx

Re: kadcyla side effects
 

Kadcyla & Perjeta (Pros & Cons FOR ME, cumulative 17 months)
Pros: No hair loss, good track record for eradication and/or stability, no bowel issues, no headaches, no pre-meds for infusions...zip and go...
Cons: Low blood platelets, bleeding (ears, nose, mouth), neuropathy, vision impairment, muscle and joint pain, bruising, red spots, fatigue, developed aneurysm.

Was all worth it.
Karen

Re: kadcyla side effects
 

anyone have terrible stomach pain after kadcyla? I had mine on Monday and this started Thursday. I should say abdomen it isn't really my stomach.

Re: kadcyla side effects
 

I have been on Kadcycla for about 6 months and have had quite a bit of stiffness and bone aches. I never associated this with the treatment but, having read your posts, I think it could well be the cause. I have had a cramping-type pain on the back and right side of my neck which might also be due to the tratment. Thanks for all the posts - I will be more diligent in the future and will check the blog when I have odd stuff going on in my body. (sometimes I try to ignore odd symptoms 'cause I think that if I don't voice my concerns, I will not allow "it" to get me!) Best wishes to all out there - Katy

Re: kadcyla side effects
 

im due to start kaddcyla soon and have been reading the side effects and has got me really worried my nurse said that the side effects arent bad on this chemo but from what ive been reading tjey sound awful
fatigue i have problems sleeping anyway
sickness i suffered with that badly on last lot of chemo
aches and pains
tingling in fingers
low platlet counts

Re: kadcyla side effects
 

Dear Clare,

Don't get ahead of yourself. Some people find Kadcyla to be a breeze, and some have gotten excellent results with it.

With every treatment, you can try it and see how it goes, then stop if the downside outweighs the upside. Kadcyla is a good drug. I was on it for 10 months, and I believe I probably benefited from it.

The best advice I ever got was not to worry about anything until I have to. Or, put another way, you don't know what's going to happen until it happens. Then you deal with it.

Keep the faith.

Re: kadcyla side effects
 

Katy,

I definitely had more neuropathy when I was on Kadcyla. Neuropathy can cause muscle cramps. I've had good luck reducing neuropathy with large doses of L-Glutamine. I take five capsules of 1.5 gm each twice a day (so 15 grams a day). My doctor knows I'm taking it.

Charlie horses in my legs and foot cramps have also been reduced since I started taking Glutamine. The chemo I'm on now can also cause neuropathy.

Re: kadcyla side effects
 

is kadcyla ok with things like onfections as i have kids that are jn school and are constantly bringing colds and things like that home

Re: kadcyla side effects
 

kadcylas s/e 's are generally better than older chemos. fever , aches with initial doses , some get platelet drop and dose reduce , like my wife did after 7 doses. went to 3.o and still got to ned . those who are on it more than a yr need to watch for chronic liver irritation - my wife just stopped as liver , spleen showing some hopefully mild impairment .
but some pts have No s/e. one woman weknow is 6 yrs on it, ned, fullstrength, no significant s/e !
I highly recomend this drug for metastatic her2 - the earlier i n the progression the better - saved my wifes ' life. see how good Lorraine looks on our website : stageivsurvivor.webs.com , and learn how to be a bc Activist, more than an advocate !

Re: kadcyla side effects
 

what do they do of platlets drop

Re: kadcyla side effects
 

Dear Clare,

First, if your doctor is recommending you go on Kadcyla you should take that seriously. A medical expert thinks you need it and should try it, so why don't you? It's a drug for metastatic HER-2+ breast cancer. You realize, I assume, that if you don't get your cancer under control the cancer will kill you. Doesn't that help put side effects into perspective?

There's nothing that can be done (other than to transfuse platelets) about a reduction in platelets, but it turns out you don't need "normal" platelet levels most of the time. My liver enzymes have been slightly elevated and my platelet count has been slightly lowered since I was on Kadcyla. Practically, it means nothing.

As for immune suppression, there is a little of that, but for me it was less severe than when I was on taxanes (first line treatment.) I could tell by how much plaque built up on my teeth. I didn't catch a lot of colds or get sick while on Kadcyla (other than manageable Kadcyla side effects.)

I suggest you just go ahead and try it, and see what happens. Let us know how it goes.

Re: kadcyla side effects
 

were 222,000 at start , went to 90,000 by dose 7 , so she reduced to 3.0 and plats stabilized in 70000 - 80000 range . with neo -paleo style dietary support- sharks liver oil for iron , greens , nuts fruit and top quality red meat . we traded off plat drop for cancer killing and would do it again. took a eek or two break here and there. this yr have not ben as diligent with diet -plats dropped into 55-65000 range , even as dose went to 2.7 then 2.4 monthly. so we stopped 2 weeks ago , and watch . I say try it.

Re: kadcyla side effects
 

you cant do anything for plats until 20000 or so -get transfused . we never needed to. we would not get tx when they dipped below 50000 -would wait.

Re: kadcyla side effects
 

start it on tuesday went tonsee my chemo nurse yesterday for pre chemo and she told me no sode effects no sickness as not given me sockness tablets which i thought was a bit strange

Re: kadcyla side effects
 

Ativan under tongue works for nausea for Lorraine . and at night to sleep.

Re: kadcyla side effects
 

how long does the sickness last a couple of days after treatment what about fatigue

Re: kadcyla side effects
 

fatigue , nausea, is not as bad as older chemos like taxanes, adria etc. , and those s/e diminish for many as body adjusts. look at Lorraine after 40 doses or so, over 3 yrs - filmed in arizona testifying for right to try laws this past spring - after flying the ' redeye ' to phoenix from boston the night before : http://youtu.be/AkQOLGpXf98 she does get tired but works pt, exercises, watches our grandchildren weekly. the quality of life on this drug is as revolutionary as its cancer killing power. good luck, God Bless.

Re: kadcyla side effects
 

im having first dose tommorrow really scared how im going to feel after wards as i have 4 children youngest is 3 so will be looking afyer her 24 7 thats why i dont want to suffer with ratigue or nausea as need to get on with day to day thinks