Tykerb SE's -OUCH!!

[jml]

Hi Friends~

Just looking for some suggestions on how to manage some of these Tykerb SE's that are painful nuisances, but not reason enough to dc/or decrease the meds.

Rash - across the bridge of my nose is a little unattractive, but no big deal...it's the INSIDE of my nose that making me miserable. it's like there are crusty, bloody, shingles in there (sorry if TMI). I use a nettie pot every morning, but then the rest of the day, if I blow too hard, I sprout a bloody nose. Anything I can put INSIDE my nose to help the rash?

Fingertips - splits in the skin on my fingertips, kind of like papercuts. i usually just put bandaids on each finger, but it seems as soon as one heals, another one pops up. I just bought a 3lb bag of oranges, but when tried to peel one the other day, it was impossible/annoying/painful! So I've settled mandarin oranges in the can.

Toes - in-grown toenails, on big toes. but both sides of each toe. again, as soon as one/one-side heals, another one sprouts up on the other side or other toe. It seems like these heal a little faster if I don't cover them with a bandaid & let them dry out, but since it's not barefoot/flipflop weather-even in Atlanta - it's a little tough. i even got my toe stuck in my new Xmas Uggs when the toe oozed and got stuck to the sheerling inside the boot (again, sorry if TMI!)

Any wisdom you can offer is greatly appreciated!
I really don't want to decrease or dc the med - especially since I progressed on the Tykerb/Xeloda combo I was on for 5mos last summer.
I switched off Herceptin based tx bc these sternal nodes weren't resolving, but turns out that was a bad idea.
My disease progressed to 2 new lesions in the L lobe of my liver (liver's been NED since resection in 05!), new nodes in my belly that are compressing my colon & ureters, and a soft tissue met just above my belly button.
I switched back to Herceptin and added Tykerb, and it seems like that's had some effect - bowels/belly not so stuck & congested & the soft tissue met feels smaller.
So, as you can understand, I don't want to risk being off treatment.

Thanks for your help in advance~

Jml

[Gerri]

jml,

I have no experience with Tykerb, but have had a few of the SEs you are experiencing when I was on chemo and Herceptin.

I had extremely painful ingrown toenails on both big toes. It got so bad I could only wear open toe shoes and couldn't even tolerate having a sheet across my feet. I finally made an appointment with a podiatrist. I had "surgery" on both toes and have been fine ever since. My nails were growing into the sides (curved on both sides of the entire nail) as well as up at the corners. The surgery consisted of cutting out both sides of the nails all the way down, he then put something where the nail was cut out that will prevent the nail from ever growing back on the sides - my nails grow and look normal. He only did one toe at a time so I could heal and still be able to walk. The most painful part - and it was quite painful - was the shot to numb the toe. I have a high tolerance to pain and that one brought tears to my eyes. It was definitely worth it though because I haven't had any problems since. Not sure if this is an option for you since you are in active treatment, but it seems that having an infection is not a good thing either.

I still get spilt fingers and have tried many things so I am looking forward to any suggestions you may get from others.

Best of luck resolving these issues. You are such a brave warrior and I truly admire your fighting spirit.

With best wishes,

[BarbM]

JML,
You sound like you had the same situation as I....I was on Tykerb/Xeloda for 6 mos and progressed. Went off Herceptin, too. I am adding back the Herceptin tomorrow and continuing the Tykerb. I am encouraged that it's doing some good for you!!!
~Barb

[vlcarr]

I did Tykerb/Herceptin as part of a clinical trial. The only SE you mentioned that I had was the nose bleeds. My onc said to put A&D ointment inside my nose. It really does work--not that pleasant but well worth it.

Hope you have great success!

[yankeebikachic]

Jml,
See a podiatrist for the ingrown nails, not fun, but the end result will be worth it. Your nails are prob. hard and your skin soft from the meds so they are piercing your skin. Also, do not cut your nails too short, and always cut straight across. And ALWAYS keep your skin covered or at the very least, use lots of lotion on your skin.
You'll have to deal with the rash on the face although I'm sure if it gets bad enough, you may want to ask for a script for that. I dealt with mine by using sunscreen during the day and used an acne medication/wipe at night. But everyone is different. And use a saline nasal spray and humidifier for the nosebleeds. Partly chemo, party winter air messing with your nose.
Hope this helps.
Beth

[yankeebikachic]

forgot about the fingers. Not much you can do there, some folks have used a henna mix ( I think) with luck...nothing worked for me except to take a few days break from the xeloda, I just had to ask for help from time to time and I also used neosporin with pain relief in it, every day...it at least numbed the pain a little.

[Georgia girl]

I have been on Tykerb only since May, 08. I am also having the very painful fingers and toes. I took a week long break at Christmas to let everything heal, which it did. Now that I'm back on the Tykerb, the sores are coming back. The nose problems are also a pain - I'm using Better Nose (a gel) that seems to help temporarily. The only thing I've found that really helps is a break from the meds - scary.

[SoCalGal]

Nose - yikes - yes, I have a few GREAT solutions. For actual cuts and sores, I use a tiny bit of polysporin ointment, sniffed in or use a q-tip. For general dryness maintenance, I use AYR gel, again on a q-tip. I also use AYR spray, as needed, to sooth. Maybe the netty pot is irritating? I am unfamiliar with the side effects of daily use. I know what it is, and that many use one, I just don't have personal experience with it.

Fingers - buy a GIANT box of disposable gloves, and wear them as much as possible. This prevents the frequent hand-washing and just protects the skin. I also have dry and painful cracks in my thumbs quite often. Keep tons of moisturizer on helps, but wearing gloves for just about everything makes a heck of an improvement.

Toes - hahaha. I've had probs with ingrowns on both - gotta be treatment related since I've gone my whole life without issue. After you see a podiatrist and are treated for any infections or nails that are ingrown, I use epsom salt soaks if the toe is sore and cranky. Tea tree oil (from trader joe's) has also helped quite a bit. As we speak my left big toe is bothering me. We'll see what tomorrow brings. Sometimes the woman who does my pedicures can fix things. Again - I am not talking about infections with ooozing - just red and the beginning of an ingrown situation.

I've been on Tykerb for almost 3 years straight. It's a delicate yet daily struggle! Right now, I'm on a break, still trying to recover from a tummy virus.

Hope these tips help!
Flori

There is no solution overall, but here is what I have done:

I play tennis so if I use band-aids before i put a lot of pressure on my fingers, it seems to keep the skin intact. I need to use the band-aids every time because I will surely get a split if I skip using them. Use a lot of hand cream multiple times per day. It helps. Sleep with cotton gloves on. My oncologist says to use Vick's VapoRub on my hands and then cover with cotton gloves. I have found that Bag Balm is just as helpful and does not have that really strong smell.

Re: toes. I don't know how to prevent the damage to the toenails, but I got a MRSA infection after I had my toenail dig into the side of my toe. So my advice is to keep your toes really sterile, particularly if you get changed inside a gym locker room.

Rash: I never have gotten the rash you are talking about, but I got yucky acne. Retin-A works wonderfully. The acne goes away in just days. Is the rash acne?

Joanna

[jml]

Thanks everyone for your feedback & great advice.
I'll be using any/all/combos of the above to manage all these
little nuisances.
But I know we all agree, it's all worth it, as long as it's working.

I'm hoping this combo will knock things back, or atleast hold things steady & stable until the new TDM1 trials open up.

Keep the Faith everyone!

Jml

ps-Joanna - the tykerb "rash" actually looks like acne - bumps, white heads, etc - but it's actually a rash. incidentally, there's a positive correlation between having the rash & drug efficacy, so there's the silver lining to celebrate this unattractive SE!

[Nancy L]

Rash - The rash on my face comes and goes and I have just lived with it. I live in the desert so I use 70 SPF sunscreen everyday and I think it helps. I did have a very serious problem with sores in my nose along with nose bleeds everyday. It went on for several months. I tried steaming but it didn't promote healing. I asked my vocal cord doctor at UCLA and he said to apply neosporin on a Q-tip and apply it inside my nose. I did it for several weeks and everything is healed--no more nosebleeds and actually my nose has stopped running--it is wonderful. After I had my problem solved, I read the instructions for using neosporin and it said NOT to use it inside your nose. But it worked for me.


Fingertips - splits in the skin on my fingertips. This is a big problem for me and also my nails are peeling. I haven't found any real solution for this problem.

Toes - in-grown toenails. I went to a podiatrist and he solved my problem.

I have been on Tykerb/Herceptin for almost one year. I take 750mg of Tykerb at bedtime.

FYI--A major Tykerb side effect for me has been diarrhea. I had it undercontrol with diet. I was recently prescribed a high dosage of Prevacid and the combo of Tykerb and Prevacid made me very ill and created uncontrollable diarrhea. Same thing with Nexium. When I stopped the Prevacid, I felt decent again. Because it is so new, they do no have a lot of data about drug interactions with Tykerb.

[Nancy L]

Forgot to mention that to prevent nose sores and dripping, I now spray twice a day with Ocean complete sinus (available on Costco--use the white tip). I then spray Fluticasone Pro 50 (this is a prescription drug) in each nostril.

I have developed allergies I never had before going through treatment for BC. The above process has really helped.

What is the general co-pay for this drug?

[Julie2]

For finger cuts I use liquid bandage. It helps.

Julie