Tykerb and Herceptin - double whammy!!

I have been on a combo of Tykerb and Herceptin - Herceptin for 15 months and both of them for 3 months now.

While I think it is much easier to tolerate than many other drugs (like taxoterrible!), there are some side effects which are still bothersome and sometimes it helps to know others have the same experience and share how we deal with them.  This is a list of the side effects I have...I know the list is long, but I don't usually have all of them at the same time :>  If you have a different SE or remedy I'd love to hear them!    

Diarrhea:  I got this on the day of my herceptin infusion (once every three weeks).  Once tykerb (1250mg daily) was thrown into the mix....boy did that change.  If I take Imodium, my diarrhea is reduced to 5-10 times a day.  Without one Imodium I can count on 10 to 20 a day....usually closer to 20 :<   I was given an Rx for this problem, but it doesn't work as well as Imodium.  Diet doesn't seem to have any impact on the situation either.  Brat diet didn't do poop for me...LOL!!!  My onc just told me to start Metamucil, so we'll see how that works....

Rash:  This is a SE of the tykerb for sure and boy is it yucky!  I get folliculitis (big huge painful whiteheads) all over my scalp, face, neck, ears and arms.  I found clindamycin gel really helps keep my face under control.  I no longer have to name the largest of my tykerb zits - I am definitely glad to have lost that conversation piece!

I get a different kind of rash on my legs.  Currently, the back of both thighs is absolutely covered with this rash.  Big, painful, swollen red things.  No head, just swollen.  It's been 7 days and they seem to be calming down a bit.  It hurts to walk, sit...etc.  I tried the clindamycin gel, rx strength hydrocortisone, Benadryl, etc.  Nothing has an impact. 

Uvulitis:  I think this is tied into my Imodium use.  If I exceed one pill a day, I can almost always expect painful uvulitis the next am, which lasts for a day or two.  Very sore throat, swollen tongue, tonsils, and my uvula is 5-6 times its normal size.  When I say ahhhhhh, it is so big it flops up onto my tongue.  It makes people recoil when they see it, so I like to torture everyone and make them look :>  It hits my gag reflex which is not fun.  To combat this: ice cream, vicodin and lots of fluid.  I read this happens to people who go on a big bender the night before and get dehydrated - nothing about a tykerb bender...LOL!!! 

Runny nose:  I bend over to pick something up, the nose faucet runs.  I keep tissues on me at all times. 

Wrinkled fingers:  My fingers are red on the tips and are really wrinkled.  Most days they look like I have been in the pool for hours.  I keep my hands greased at all times with jergens shea butter lotion and keep as hydrated as possible.  Some days this doesn't help, but usually does.  I read this is caused by dehydration, too.  If I drink anymore fluids I could float away! 

The tips of my fingers are also a little numb - I think it might be the neuropathy caused by taxotere\carboplatin I was on in 2008?

Bladder:  Burning after urination, or feeling frequent urge.  I have had tons of urinalysis tests done and do not have a bladder infection, but if I do not keep super hydrated I can plan on these SE.  I try to keep myself flooded so I don't experience this problem.

Nails:  Toenails and fingernails now love to break off below the quick.  Whole sides of my toenails fall off and when they grow back I get ingrown toenails.  My doctor said I should cut them straight across......seriously - I know that!  The darned things are breaking off - I don't even need to cut them.  I have also had an ingrown fingernail - I never heard of such a thing!  I got an RX for clobetasol (strong hydrocortisone) which I put on the area to help swelling.  I also put my clindamycin gel on there to help with any infections. 

Finger and heel skin splits: Tykerb likes to make really painful splits on your fingers and heels.  I have a bottle of super glue with me at all times so I can glue those shut - boy does that help!  

Slow hair and nail growth:  The hair on my head has grown about 2 inches in the last year.  Slow indeed :>  My eyebrows are finally almost all back in, but my eyelashes are very short and stubby and have fallen out twice since my chemo.  I have been using an RX for latisse for the last month and hoping it will spark some growth for me.  It's amazing how much stuff eyelashes keep out of your eyes!  

Muscle spasms:  I get awful muscle spasms.  Sometimes when I yawn, I get a big one in my neck.  They happen in my legs, hands, feet, etc.  My onc suggested I take calcium and magnesium supplements - that has helped relieve the problem a great deal. 

Swollen ankles:  This is a problem off and on, especially when I travel.  If I am in a car or plane for any length of time, my ankles blow up.  Rest and elevation are the only thing that seems to help. 

Blood & sores in nose:  I don't have bloody noses, but I do have blood in my nose every day and it is on my tissue sometimes when my nose runs.  I put Vaseline in with a Q-tip or spray in saline and that seems to help a bit.  I also get a little open sore that seems to come and go...I put neosporin on that until it goes away.  

Sue - I'm glad the combo is being kind to you!!  I think it is very do-able compared to the other meds...these SE are just more of a bother :>  The weirdest SE is the swollen uvula....seems like that is a special one just for me...LOL!!!   Best to you!  lisa

Thanks for the link Lucy!  I never thought I'd be glad to see pimples and rash, but I am now :>

Darn!

That's okay.....I just wish there was one good side effect from all the stuff they give us.  Instead of fat and pimply with sparse hair, wouldn't it be great if the meds gave our bodies a great shape, a beautiful complexion and a long mane of hair....LOL!!!   Sigh....this stuff is definitely not a beauty treatment :>

I know this looks like a lot of symptoms, but they are really mild and nothing compared to those I had with TCH...bleck!!   Besides, I am heading towards 2 years on this stuff so I think my body is getting a little weird.  I have no other health problems besides this stinky cancer.....never took anything more than an occasional tylenol, so maybe my liver is freaking out with tykerb?  Who knows :>  My dose has been reduced to 1000 mg daily, so most of those SE have now disappeared....yay!!!  

I certainly do hope the rash means it is working because it means it is really kicking butt for many of us!!  

I'm right there with ya!  The SE are nothing compared to my mets so I am happy to do this stuff or the rest of my life :>  Besides, these SE are more of an annoyance and not that bad.  The pills for as big as they are go down really easy, too!  I was very surprised and relieved because I have more trouble with my calcium pills..LOL!!  

Lovetosail.....yay!  I am so glad you are done with tykerb and chemo!  You must be thrilled to be getting a break.  Herceptin alone will be a piece of cake :>  I was on herceptin by itself for 8 months and I had a few SE, but nothing that bad.  You'll have to let me know how it is for you....meantime enjoy your spring meds break!!!  lisa