kadcyla side effects
 

I just began Kadcyla 4/4/2013 and I had the fluish feeling 3-4 days after, loss of appetite and then return of it in a big way but I haven't heard anyone talk about headaches. I'm wondering if anyone has had them because it bothers me especially since I had to stop tykberb. I feel they are related to neck/muscle pain but am not sure. I have another tx Thur. and will talk to onc but I would feel better to know if others have experienced them and if they decrease with time.
Thanks, Cathy

Re: kadcyla side effects
 

I had my first infusion of Kadcyla on 4/3/13 (a Wednesday). I had low-grade fevers and headaches on Friday and Saturday but none since then. I go tomorrow for my 2nd infusion and will mention it to the doctor. I think I read somewhere that headaches can be side effect.

- Penny

Re: kadcyla side effects
 

Hi Penny,
On Wed. I bought a new pillow and Thur. was 90% better in terms of headache. So I was thinking as was the onc that it may have been just from my neck. Had my 2nd infusion yesterday and getting a headache maybe from kadcyla but thinking now it also can cause joint and muscle pain which I would think could affect neck too which tends to be a weak spot for me. Otherwise uneventful and my counts were good.
How did yours go? I'm hoping you will do well.
Cathy

Re: kadcyla side effects
 

Hi. I had my 2nd infusion last Wednesday. Started yesterday with headaches (minor) and nausea (also minor). No biggie.

- Penny

Re: kadcyla side effects
 

Hi Cat,

How long are you going to be on this drug?

Thank you for responding.

Adriana

Re: kadcyla side effects
 

I don't have a time frame. I think it's until there is failure. It's funny I have been so focused on getting it and seeing some positive right away I never asked. That's not like me! It sounds like it's an ongoing tx tho. Maybe Penny has an answer for hers. What's next for you? It seems there are lots out there to try. Let u's know.

Re: kadcyla side effects
 

I thought when you're stage 4 you stay on current treatment until progression? (Unless you have some sort of bad reaction).

- Penny

Re: kadcyla side effects
 

Yes I think you are right about that. Except that when on abraxane my onc said if I got to remission I'd go on something more maintenance. Maybe remission is a pipe dream but I can pray we all find it. In the meantime life is pretty good but I dare not speak too loud to awaken the nasty cancer monster!!!

Re: kadcyla side effects
 

I also just stated Kadcyla, and am noticing some fatigue. It's been 9 days since my first infusion, and I am wondering if any of you know when the side effects, fatigue, low platelets occurs mainly. Thanks,

Re: kadcyla side effects
 

I just started Kadcyla, after a brief period of being on Herceptin only.

Things that are different for me are: (a) more hot flashes than before (I'm 59 and had natural menopause in 2009), (b) occasional very mild nausea, (c) occasional diarrhea, with accompanying cramps/abdominal pain. No headache, no fatigue. Very mild symptoms. But maybe it'll be cumulative.

Re: kadcyla side effects
 

Hi!
Keep in mind everyone will respond a little different to txs.
I've had 2 infusions so far and due again next thur. I had headaches last wk of first infusion but may have been neck/pillow issues. I had minor nausea on and off. Fatigue maybe a little but I don't have little ones anymore and that alone can give you fatigue! I have had shortness of breath but I'm also dealing with a pleural effusion. My blood work was checked 1 wk and again 5 days later. Platelets went down and back up and liver enzymes went up and down. I asked my onc at the worst if I could have receivedtx and he said yes. This time no blood work in between so I don't know where I'm at right now. I've heard SIs decrease with time but even if they don't I can function very well like this. I drink lots of water and stay hydratedand feel that has helped a lot in all txs.
Keep the faith and keep us posted.
Cathy

Re: kadcyla side effects
 

my wife's 4 month scans just came back , still NED ! , 34 doses , 7 at fullstrength, 3.6, then areduction to 3.0 to help plats. started tx in nov, 2010. ned since nov , 2011
her s'e s of fever, chills, fatigue lessened after several doses. but plats are an issue that can knock some off the drug, so be pro-active. we balance getting as much as possible of the full strength to kill cancer with protecting bone marrow. Lorraines plats started dropping after first dose, from 220,000 range to 100,000, then to 90,000 by third dose. in hindsight we should have started protecting blood counts then. plats went below 40,000 because of sepsis, related to old stents, then up above 50,000, and we got an exception to continue tx., now in 65,00-75-000 range, occ. up to 80's, once to 96 past yr. we are spacing tx out carefully , to 3-4 weeks, and plats are slowly rising, but we want to make sure cancer stays away. we follow ' our own style of a " neo-paleo diet , greens, fruits, nuts and , yes , top quality , red meat like porterhouse , bone in , some fat , not too lean. sharks liver oil and chlorophyll from health food store. works for Lorraine.
she has neuropathy that was already there, but is worse.
Lorraine was helped by aggressive tx from beginning , at top research network - at MGH in Boston. recommend that all stage iv get to research hospital early, or get second opinion. if we had stayed in suburbs, she would be dead today. kept cancer contained to liver area, but still grew to 7 + tumors in liver, more squeezing akidney shut, bile duct shut All Gone ! Praise God... we plan on taking it until something better comes along , God Bless , and Heal

Re: kadcyla side effects
 

Great news Phil, happy to hear that Lorraine is still NED!

I had my first infusion of TDM1 2 weeks ago, I am on a clinical trial, as kadcyla is not yet available in Australia.

I had some terrible headaches in the first few days, as well as nausea and fatigue. I needed to nap for a couple of hours each day. Feeling good now, so hopefully I can get some anti-nausea pills that work better for me, and that will make things easier. Does anyone recommend a certain anti nausea?

Amy, did you not have any fatigue at all? Wow.

Thanks for stariting this thread Cat, maybe we can keep it going?

Dawn xx

Re: kadcyla side effects
 

Lorraine finds ativan ( lorazepam ) works best for her , tried zofran way back when on TAC chemo, and it worked way too well -constipation - so she has trusted lorazepam since. very occasional nausea now .

Re: kadcyla side effects
 

Thanks Phil, does Lorraine still have much fatigue?
Dawn x

Re: kadcyla side effects
 

Thanks for the update Phil. Thank You, Lord!

I just has my 3rd treatment today.

-Penny

Re: kadcyla side effects
 

L. still has fatigue, peaks 7-10 days after tx. makes sense w/ low plats. bruises easily. her red counts are in low normal range , which we feel is kept up by the diet, sharks liver oil. the fatigue is nothing like the more toxic chemos, TAC, adria etc. she works 15 hrs or so aweek, and watches a9 mo old grandchild all day ix aweek, walks and even jogs a little. her neuropathy bothers her , but she hasnt yet sought tx for it, other than massage.
she gets a bit depressed at 7-10 days too.
the ativan works best for nausea when put under the tongue, quicker that way. be careful as it is sedating, with things like driving . helps w/ sleep at night too.

Re: kadcyla side effects
 

Thanks Phil, I have only ever Ativan to sleep, I have never tried it for nausea. Still learning!

Best wishes to you
Dawn

Re: kadcyla side effects
 

Got my 1st Kadcyla yesterday. Was given Benedril at 10:30AM. Ok till around 6:00PM. Chills, muscle pains, headaches.... slept from 7pm to 7am for 12 hours.. did wake up at night but had no problem going back to sleep. Not sure why i was so drowsy.. can Benedril kick in again after several hours?

This morning no appetite. Had some sweetened ice tea... pieces of Chile and Lime patato chips.. Other than that, no biggie. now at work

Re: kadcyla side effects
 

Yanyan, The benedryl knocks me out almost instantly but then I wake up wide awake. I have had trouble sleeping the night of tx, possibly due to the 1-2 hour nap at chemo so I am jealous. I don't sleep well as it is and 12 hours sounds heavenly. I don't think the benedryl can affect you with that much of a delay. My understanding is that the pills have a slower start and the infusion hits your system very quickly but they both wear off fairly quickly. Maybe your adreniline was up during the day and the let down came that night. I don't know. I have had most of my se's starting late Fri. on and off till Mon. (I also have a Thur. transfusion). I have heard others say their appetite was down the first week after and then returned the second 2 weeks. Mine decreased a little but I ususually don't have trouble with appetite. I go in again next week so I'll see if anything has changed.