kadcyla side effects

[Cat]

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

[Redwolf8812]

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

[Cat]

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

[Redwolf8812]

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

- Penny

[Adriana Mangus]

Hi Cat,

How long are you going to be on this drug?

Thank you for responding.

Adriana

[Cat]

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.

[Redwolf8812]

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

- Penny

[Cat]

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!!!

[KristinSchwick]

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,

[Mtngrl]

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.

[Cat]

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

[phil]

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

[dawny]

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

[phil]

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 .

[dawny]

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

[Redwolf8812]

Thanks for the update Phil. Thank You, Lord!

I just has my 3rd treatment today.

-Penny

[phil]

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.

[dawny]

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

Best wishes to you
Dawn

[yanyan]

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

[Cat]

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.

[yanyan]

Hi Cat.. i must be blessed that despite the chill, muscle pain i was able to sleep for that long :). I stayed in the hot shower for at least 15 mins because the chills were so bad although my body felt warm. Let's hope Kadcyla will do the magic for us !!! Phil has a good list of supplements/food while on Kadcyla. I am going to follow his suggestions to boost my palates up.

[annmask]

It seems like s/e are different for many of us. I have had 3 doses of Kadcyla, and have headache and fluish symptoms on and of the first week. I feel fatigued the first 2 weeks, well the 3rd. All in all better than chemo as well as Tykerb and trial or targeted therapies I have been on, but harder than I thought it would be. I also have the chemoey taste, and a loss of appetite. I had lost about 8 lbs., but gained it back since I am on steroids for brain mets. Stopping the Kadcyla until June 25 while we treat the brain mets.

[dawny]

Sorry to hear about the brain mets Ann. How are you having them treated? Do you have to stop chemo whilst having them treated?

I have had two cycles now and in the second cycle, I have a dry mouth. Dry mouth sounds pretty lame to be complaining about, but it is really awful! I need to google if there is anything I can do about it. I tried to eat some cashews the other day and nearly choked lol.

My fatigue and headaches weren't as bad this cycle, still there but not as bad, and I also got something different for nausea, and I think that made the world of difference

Stay well
Dawn. Xxx

[annmask]

I am going a bit non-conventional as I am not interested at all in WBR. I will have partial brain radiation to my cerebellum and brain stem. The largest and most active mets are in that area, and the spots above the cerebellum are very small. It is pretty scary especially as Kadcyla doesn;t get into the brain, so I will need to find a trial pretty soon. I was told I had a spot on the Neratinib trial that would be there in 6 weeks, but it was given away while I waited the 6 weeks for my follow up MRI. Very disappointing. I will just trust that I will be able to get on a trial that works for both my body and brain!

[dawny]

Oh that is disappointing! Do you have your onc on the lookout for you? Partial brain radiation sounds like it makes sense to me, if you don't need it everywhere, why put your brain through that? Best of luck finding what is right for you
Dawn. Xx

[NEDenise]

Hi Ann
Just replied on you other thread too! Did Tykerb stop working for you?
Denise

[phil]

Lorraine gets the dry mouth. biotine helps.

[annmask]

Tykerb quit working for me quite some time ago have had it in various combos over the years, and usually get 3-5 months out of it. On to the next BBB busting targeted drug (I hope!). Kadcyla does not cross, so I doubt my dance with Kadcyla will be long enough to meet NED on the dance floor. Oh well. Just happy to be enjoying another summer with my loved ones!

[NEDenise]

Ann,
At a conference in April a Mayo doc talked about some BBB cross-ers. Parp inhibitors that are still in the pipeline...
iniparib
olapanib
veliparib.

Not sure when we can expect them to be "readily available". If she shared, I didn't write it down. The drugs have names, not just numbered code names...so they have to be in stage II trials at least. I'm thinking they MUST be in active in trials or available off label somewhere if we need them. Of course, I'm not naive enough to think it would be "easy" to access them...but I'm a glass half full kinda girl! :)

Love the idea of enjoying another summer...and LOVE the attitude that makes you focus your energy on that! :) No wonder BC is scared of you!

Denise

[annmask]

Do you know if those drugs are effective for us HER2 ladies? Trials have focused on triple neg or basel cell bc.....

Thanks for your warm and encouraging words!

Ann

[Cat]

Annmask, I am sorry to hear of your struggle but am sending lots of prayers that something comes along for you to handle both body and brain at once. It seems there is always something coming up and I hope a great one becomes available for you.
Your comment about another summer reminded me of this:
Our kids are adopted and when we had our son from South Korea, they had closed Korean adoptions so we moved our paperwork to the Phillipines. It all takes a lot of time and I kept saying one more summer with enjoying and bonding with my son before attention is divided. Well that summer turned into 2 and got close to 3 when we decided to see if Korea was open to special needs. When I called, my social worker said she had just received a letter saying there were 2 spots available for healthy babies for IL families and we qualified. I could still be enjoying summers but a miracle happened and you just don't know what's waiting around the corner.
Good luck with everything. Let us know how you do with the radiation.

[Mtngrl]

I had my second dose of Kadcyla last Thursday. My side effects are fairly severe and persistent. I haven't really had this much discomfort since Taxol.

I will have to start watching for patterns, and seeing if there's anything I can do to head of any of this stuff. It could be that the severity this time was enhanced by jet lag and lack of sleep. I had just gotten back from a trip to Ireland that morning, and I kind of took the long way home.

Here's a list of side effects that I've experienced: dry mouth, brittle finger nails, hot flashes, nausea, diarrhea, headache, and neuropathy. When I had neuropathy while taking Taxol I started taking glutamine. I bought some more yesterday. Too soon to tell if it's helping. I wake up with headaches, except the last two nights I took Ibuprofen at bedtime and I didn't get them. I dug out the Comapzine and Ativan, and they are good for dizziness/nausea.

The last four days I have felt sick about 1/3 of the time. I'd say the nausea and sweating/hot flashes are the least pleasant effects. Diarrhea is very occasional, and not nearly as big a problem as when I was on Tykerb.

[yanyan]

Day 6 since 1st Kadcyla. I have been sleeping a lot the last couple of days, average 10 hours a day. Side effects include loss of appetite,manageble nausea, tiredness. Not sure if i should take medical leave at this point. just had a whole body PET and brain CT today. Hopefully everything is good and the cancer is still confined to the skin.

[annmask]

Cat, I too have an adopted child- age 16 now from China. She was 11 months old when I adopted her, and 2 when I had the DCIS and mastectomy. I had my second miracle with the biological birth of my daughter now 11. The shock of stage 4 after being "cured" of pre-cancer came when they were 11 and 6. Life has many surprises, both magically fulfilling, and devastating. It is all about acceptance for me, and loving each moment I have with my beautiful daughters on the green earth!

[Mtngrl]

Annmask--I no longer think DCIS is necessarily "precancer." We just lost our dear Chrisy, who was also diagnosed and treated at stage 0 but progressed to stage 4.

After my whining yesterday I feel fine today. The hot flashes persist, but they're really not too awful. (I just thought I was done with all of that!)

[Redwolf8812]

I've been getting headaches, fatigue, & nausea. There's no rhyme or reason when I have these side effects. They're sporadic and happen anywhere from Day 1 - 21. Today was the first time I actually vomited. We were in the car heading home from Mass. Thank God I had one of the blue plastic barf bags from the hospital. I just ordered more on from Amazon. It's so easy to keep one in your purse.

God Bless.

- Penny

[Cat]

Penny, I am relieved to hear you say symptoms come and go at any given time because mine have been doing that and I've been wondering if it's my imagination or talking myself into it. I am sorry you threw up thO and hope you are doing better I have ondesttron (spelling?) zofran I think. It works really well and I take it the first sign of nausea. Melt in mouth and individually wrapped so easy to carry with. Causes possible constipation but I haven't needed it regularly so even tho I'm prone to constipation, I haven't had a problem. The fatigue is hitting me but I've been able to do more because I really have been feeling better in general. The fatigue mainly hits late afternoon and evening. I wake up w headache in morning and it goes away as I start moving. I'm still wondering if it's my neck which I suppose could be the joint/ muscle pain??? All that I do know is I have never in my life been so focused on every twinge and bowel movement in my life as I have since all this started!!!! I try not to focus but it's hard to stop! Bad habit. I had my first follow up CT thur so this is a very long weekend and I have head and neck MRI mon. We haven't done markers recently so I have no idea where they are at. I'm hoping even though symptoms are irratic you at least are feeling good otherwise. Positive thinking.,,,.
Take care,
Cathy

[NEDenise]

Ann,
I'm sorry I didn't reply to your question sooner...I just saw it today.
The 3 drugs the doc mentioned at the LBBC conference aren't specific to one kind of BC, so they should work for us HER2 gals. The problem is...when will they be available?
Denise

[Redwolf8812]

Cat - Are your headaches localized? Mine start in the forehead and travel down my sinuses. I'm going to ask about zofran. I have compazine pills that take a while to kick in so I end up taking them with xanax, which only contributes to the fatigue. Feeling better today, thanks.

Denise - I was on a clinical trial that involved veliparib. Don't know if I got it or the placebo, though. I thought parp inhibitors were only for BRCA1/2 cancers?

- Penny

[NEDenise]

Penny,
You may be right...I'm certainly no expert...but that wasn't the impression I got. Anyone out there know the answer?
Denise

[Redwolf8812]

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

[Cat]

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

[dawny]

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

[KDR]

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

[allisontom911]

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.

[katymc]

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

[clare147]

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

[Mtngrl]

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.

[Mtngrl]

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.

[clare147]

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

[phil]

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 !

[clare147]

what do they do of platlets drop

[Mtngrl]

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.

[phil]

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.

[phil]

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.

[clare147]

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

[phil]

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

[clare147]

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

[phil]

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.

[clare147]

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

[phil]

for lorraine , the /se of fever, chills set in on day 2 after chemo lasted a day or so. some fatigue from day 2 on - so we got a tx on thursdays so i could help more on wkend. saturday was lorraines fever , chills day and she slept in afternoon. we did not have small child to watch - so some help for you those days 2-4 or so would be good. after 3 doses or so the fever went down , no chills , rare nausea. and then she reduced dose to 3.0 and fever became rare .
the long term effects for some - on plats, liver irritation are more of a concern for some super -responders like lorr. those who get a yr plus ned. lorr. had nueropathy from xeloda before t dm-1 , t dm-1 has made it worse, but she doesnt take anything. i hope you get the same response as for lorr. for her , this drug truly is a lifesaver . we would gladly take it again in same situation . much better than taxanes, adria, xeloda etc. for her .

[clare147]

my husband keeps saying ots like the herceptin and i was fine ob herceptin but keep telling him its nothing lile herceptin its chemo

[clare147]

how long did lorraine feel rough for after each treatment

[phil]

rough stuff was tac, xeloda and especially adria the second time. t dm-1 was much easier than those. felt the chills, fever for 2 -3 days during week one. then 2 weeks to rest up. t dm-1 is a chemo , so it has more s/e than Herceptin alone. but metastatic cancer is aggressive and t dm-1 is the strong cancer killer metastatic her2 pts need. some pts have no s/e.

[clare147]

had it yesterday went really well woke up this morning really tired achy and drained have had a bit of a headache today have felt a little nauseaus
i dont know how long.side.effects take to show if they show at all