Kadcyla - 2nd treatment need advice please

PatE · 11-19-2013, 01:09 PM

Hello
My last pet scan showed progression in my lymph nodes, 5 active areas so my Onc put me on Kadcyla. I had my 2nd treatment last Wednesday, Wow guess I had my head in the clouds but I did not expect to suffer like this.

After1st treatment from day 3-8 I could barely function, my body hurt pretty much all over but mostly in my lower back and hips. I can only stand for a few minutes at a time. Taking Aleve and Tylenol but really doesn't help much. Appetite is very low, I also suffer from GERD which makes eating even more difficult. Feeling very weak and depressed, cried most of the day yesterday and I am not typically someone to cry. It's just that after almost 7 years of fighting this monster I am just plum worn out.

Any suggestions as to how to handle these side effects would be most appreciated, I know there are ladies out there who have been on this drug for years so there's got to be a way through it.

My infusion was 30 minutes so I thought next time I would ask for slower drip, on 100 mg - any thoughts on asking for a lower dose.

Wishing good health for us all

Many blessings & thanks
Pat

KDR · 11-19-2013, 01:35 PM

Hey PatE,
I'm really sorry to hear about your pain. You know, it's been explained to me this way: chemo is cumulative and so are the side effects. Have you tried a good diet and exercise plan? Indulging in YOU?
Whenever I get down, and that can happen while waiting for test results or getting not-so-favorable results, I do the same thing...I wash the floor on my hands and knees. That gets the anger out. Then I go for a massage. That gets ME going.
I'm sorry we can't all just jump out of this ring. And I wish you better, more pain-free days ahead, for sure.
Treat yourself well, you are a champ,
Karen

Cat · 11-20-2013, 10:06 AM

I have heard a lot of people say the side effects were worse in the beginning and subsided with time. Mine have come and gone and it seems have very litlle rhyme or reason. I get the feeling this is all individual and I agree sometimes moving helps, along with self care. I have also heard of dose reductions but that's up to you, your onc and blood work. Seems early though. You may adjust to it with time and reduced anxiety. Good luck. Let us know how it goes.

waterdreamer · 11-20-2013, 02:33 PM

Hi Pat,
It seems that everyone has completely different reactions to different chemos. I was on Kadcyla for 2 years, before I decided that it was time to move on. I am now on Navelbine, which many women say is very easy. It was not for me. The first chemo I had chills, fever, nausea, no appetite and my whole body hurt. I felt like I had been kicked in the back. It really knocked out my WBC's and I had febrile neutropenia. My doctor lowered the dose on the next treatment to 25mg/m2 from 30mg/m2. My next dose was way easier to tolerate. By the way, the only chemo that I ever threw up on, was Kadcyla. Hang in there, and give it a bit more time. Please take a Potassium/Magnesium mix as Kadcyla depletes your potassium reserves which causes cramping. I take the twinlabs potassium/mag. Also be sure to drink a lot of water, I drink lots of green tea/no sugar. Good luck and keep us updated on your next chemo.

Best wishes
Fern

PatE · 11-24-2013, 08:32 AM

Thanks for the suggestions, feeling better today but still have the back aches. Having a bone scan on Tuesday to rule out bone mets. Prayers are much appreciated.
Thanks ladies, you are awesome!
Pate

phil · 11-26-2013, 08:25 PM

my wife has been on it 3 yrs. s/e were not as bad as yours , for many they get better as you go along. I would encourage sticking w/ full dose , if u can stand it , till you get scans. see if you're getting response. my wife did have to reduce after 7 doses to 3.0 , and still got good results , eventually ned by one yr. of tx. maybe you can flex schedule a bit, to every 4 weeks. that's what we're heading for, altho, on the other hand , every 4 weeks for my wife does give her a little worse s/e 's for her , maybe body loses a little resistance to s/e when schedule changes ? . its tricky. her s/e are low plats , causing a black eye /bloody noses, red spots on skin, fatigue, some depression days 7-10 that passes. liver irritation that drops if drug is delayed. we don't know the drug that well yet - its the first widely used conjugate , genetic/chemo attached . Good Luck.

gritgirl · 12-07-2013, 08:31 PM

I just had my first dose of kadcyla. Little achy, tired, and peeing a ton. Drinking lots of water and eating bananas, etc for potassium.

PatE · 12-09-2013, 08:41 AM

Thanks Phil and grit girl,
I had my third dose last Wednesday, had the drip slowed to 90 minutes and the se have been better this time. Fatigue, some stomach upset and achy. Overall treatment 3 was much more manageable.
My bone scan showed a met on L4, went to see my Rad Onc and he agrees with Onc to wait to see if Kadclya works before we try any additional treatment.
Thanks to everyone for their input and blessing to all
Pat

phil · 12-10-2013, 08:20 AM

PatE , glad the last tx was more tolerable. a couple more thoughts- you are triple pos. right / so keep an yee on anit- er tx's . talk w/ your doc , either along w/ t dm-1 or after , hoopefully having a complete tdm-1 response. diet is very important, esp if u have bone mets . need to support your bone marrow, we do our own version of neo-paleo, with sharks liver ol and chlorophyll from health food store, 1,000 mg folic acid . works well for red counts and somewhat for plats. they stya in 70's to 80's . enough for continued tx. Fern - have u though about herc/gemzar instead of nav. ? a friend of ours , peter d., triple pos, had progr. after 9 months of t dm-1 . tried herc / nav , didnt work well or s/e i'm not sure , but he quit it quickly and wnet ot herc/gem. been on a good roll w/ that most of this yr so far . feels good. God Bless, Heal to you all. have Blessed Christmas... lorriane and I went skating with " The Littles " on Sat. , thats what my fam calls our grandkids, all 7 of them aged 1-6. all born since dx 2006.

phil · 12-10-2013, 08:23 AM

translation : " keep an eye on anti - estrogen tx's ", aftr you hopefully have a complete t dm-1 response, as safety net
sharks liver oil

LISA D · 12-12-2013, 04:28 PM

Dear PatE

I have just started Kadcyla and have recently taken my third treatment. I had a mild allergic reaction on my first treatment and my oncologist set me up on a protocol that seems to work pretty well. First, I take a small amount of Decadron before I leave for treatment in the morning. When I arrive they give me a bit more along with a small dose of Benadryl and Pepcid. In addition, they infuse the Kadcyla over a period of 1.5 hours. During the treatment (when I am awake) I drink lots of water and they continue to infuse me with fluids for a half hour after the Kadcyla has finished.

I am somewhat blotted when I am finished, however I have felt pretty good afterward. So far my only significant side effect is a bit of nausea beginning on day three or so. It is tolerable.

My blood counts have been unaffected so far, most particularly my platelets and WBC's.

You might want to try this. I think the additional fluids really help.

I have been battling the beast for the past 22 years and had been NED for 8 years prior to last September.

Good Luck and don't give up.

Lisa D.