Tarceva Side Effects...anyone?

Hi All...I have a question for you all...my mom has been on Tarceva for the last two months. She had to back down from the full dose for a bit because she was getting severe ulcers in her mouth. She went to 100 then gradually worked back up to 150. She has now been on the full dose for about a month and a half. She still gets the mouth ulcers at times, but they go away after a day or two. She is, however, getting some other odd side effects and I wanted to see if anyone was experiencing any of these and may have some advice/remedies...(by the way, she was also doing Zometa for a bit too)...
1. Peeling skin on fingers and heels - they are sore and cracking
2. A hot "prickly" sensation that lasts a few minutes at a time - usually happens when she is excited/stressed. It happens all over her body.
If anyone is experiencing these side effects and has some advice or information as to how long they may last I would greatly appreciate it...I will pass it along to my mom.
As always, thanks so much for your help and support!
Terri

By miracle_b
Posted October 17, 2009 at 8:55 pm
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hi terry,
im on tarceva i have been now for 8months and the one thing i noticed that u mentioned is cracking on heels i have that and yes it does hurt then i end of making it worst cause i peel my skin off im trying not to do that i just make sure my feel tay lotioned up and try not to walk around barefooted. im on 100mg it was 150 but my rash on my face was really bad and hurted so bad so she lowered the dost my face is still rashy but not so bad i hate it though it sucks my face was really really clear and pretty now its like blahhh! lol =)

By drawing3d
Posted October 18, 2009 at 3:50 am
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Hey Terri! Other than the Tarceva issues, I hope your mom is doing well. Pleae tell her I said hello and that I think of her often.
God bless you guys,
Ellen

By annie56
Posted October 18, 2009 at 7:51 am
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Hi terry, my husband has NSCLC stage 4 w/bone mets.
Dx 11/14/08.. done radiation/6months chemo... in july/aug 2 diff chemos tried with bad results... He has been on Tarceva 150mg since sept 8- had horrible I mean horrible facial/neck/chest /back rash along with millions of whitehead pimples. Had to get presc meds for it. Rash all gone now- went back to Drs 10/8 and my husb. asked dr if he could lower the dose as he is soo sick from it... lots of stomach trouble. no vomiting. has trouble eating...dr said NO.... we go back on 11/9 and probably wont see a scan until somtime in dec. cause dr says has to be on treatment for 3 months to see if its working!!!!

By gjb38
Posted October 18, 2009 at 10:16 am
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Hi Terri,
The effects of Tarceva really differ by individual. There are some people who cannot tolerate the drug at all and must resort to other forms of treatment. And many people change their dosage strengths because of tolerance issues.

I've been on Tarceva for 5 months now. In the beginning I had stomach cramps, occasional diarrhea and of course, "the flaming rash" which affects more than 55% of the people who use Tarceva. Oh, I also was very fatigued during the first few weeks. Now the fatigue is completely gone, no more diarrhea and the rash is mostly under control....and the Tarceva is working for me!

As for your Mom's peeling heels. Suggest that you purchase a heel file at CVS or Walgreens and after daily filing, apply a good heel balm - that should help matters.
The prickly sensation sounds like anxiety.

I'm curious, why was your Mom on Zometa for just a
brief period of time?

GJB

By Pitrel
Posted October 18, 2009 at 10:34 am
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When I was on Tarceva all of sudden if I felt warm, it would feel like I was being bitten by misketas (sp?) thats the only way to describe it. It would happen all over but then in a few seconds it would stop. So maybe this it the hot prickly feeling you are discribing. It didnt happen all the time just every so often. Sometimes it made me itch when this happen too, but I learned not to scratch then it would go away quicker. Use lots of lotion on feet and hands.

By diamond
Posted October 18, 2009 at 10:34 am
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Terri:

I have sclc and nsclc, with mets to liver (apparently sclc is lung and nsclc is liver). I have been on Tarceva for five months. My symptoms come and go, except for the rash (zits or pimples on face and occasional rash in other areas--have this almost all the time except when I have been in the ocean--but it comes back). I do not have skin cracking and peeling but I do have nails that grow weird and often split or break. I have some ugly skin on my hands and left arm--probably cause by exposure to sun). I can't say about the prickly sensation--occasionally I get a feeling like a prickly sensation in my abdomenal area--like coming off novacaine. I also have numbness in my feet and toes--also occasionally in fingertips.

I am, however, a male. I wonder if the side effects might be different by gender--not a chauvinist--just curious.

Jim

By mkubee
Posted October 18, 2009 at 12:55 pm
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My mom has just passed the three month period on Tarceva. She's gotten one weird side effect after another -- it seems we start to move on from one weirdness... in a few days here comes another pain in the butt. It seems the issue that has caused major impediments to quality of life have been muscle pain that we can't seem to get ahead of... Anyway... today, it is a stiff painful neck -- which she has had before, but took days to resolve and let me tell you at the moment she's so miserable she could punch kittens.

As for the two side effects your mom is experiencing ...the hands, feet and nail issue seem to be common... for my mom they started around two weeks ago-- it appears we have it under control, but as with most of these side effects you have to be proactive or it will make her miserable. I bought my mom aquaphor for the cracked finger tips, she puts it on several times throughout the day and at night and covers her hands... She started to get a couple of infected nail beds on her right foot... we've tried a number of home remedies and have a podiatrist appointment coming up -- but soaking in epsom salts seems to have kept it in check while we wait to get to the doctor.

My mother has complained a couple of times of feeling like pins pricking her -- it only seemed to last for a bit and hardly seemed worth trying to do anything about -- but it was a no brainer to blame that weirdness on Tarceva, it just sounded like something it would do -- as you can see Tarceva has become a member of the family...ya know, like the uncle that you hate... but he still insist on showing up at all of the holiday parties and usually breaks something. All in all, I complain but if it's keeping everything stable... we'll continue to endure.

Good luck to you and your mom.

By robinhood
Posted October 18, 2009 at 2:02 pm
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I have been on Tarceva for year. I never had much of a skin rash, but the diarrhea has been the worst and because of that I was reduced from 150mg to 100 mg around month 7 on the drug. it has worked very well for me.

if your mom can tolerate it - coat her feet with Vaseline and cover with a pair of thick white socks. If she can sleep in them the better, if not just wear them around the house for 6-8 hours. Same with the hands and finger nails. You have to stay moisturized - so the vaseline treatment for the hands has worked well for me. I just cover them with the Vaseline and wear gloves for a couple of hours and that starts the splitting of the skin around the nails. I also have suffered very dry eyes and use artificial tears for that and I have to keep the corners of my eyes moisturized or they will split.

I also found that drinking lots of water helps. As someone else said, we are all different and our bodies respond to this drug differently - if it is working we keep trying to find ways to manage the side effects.

Good luck to your mom.

By sandybeach41
Posted October 18, 2009 at 8:17 pm
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I,M SO GLAD SOMEONE HAD A QUESTION ABOUT TARCEVA. I WAS ON 150 FOR 2 WEEKS THEN TAKEN OFF FOR 2 WEEKS. I'M TO RESUME THIS WEEK.

EVERYONE HERE IS SEEMING TO TAKE THE SIDE EFFECTS BETER THAN I AM. MY WORST COMPLAINT BESIDES THE RASH ON THE FACE WAS SORES IN MY MOUTH AND EXTREME FATIGUE.

hAS ANYONE POSTED ABOUT HOW EFFECTIVE IT IS COMPARED TO THE HORRIBLE SIDE EFFECTS.

By LTLCS
Posted October 18, 2009 at 10:06 pm
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I just want to share with you that if you go to the righthand top of the page you will see a white box and next to it it says "Find It". If you type in Tarceva side effects, you will find so many posts from members regarding side effects and just about anything else. It's a great tool here for looking up past messages and getting lots of info.

Best wishes,
Connie

By GerrysGirl
Posted October 19, 2009 at 9:24 am
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Hi: I just wanted to respond to your note. Thank you for replying. My mom also was taken off of Tarceva before she was cut back to 100 mg. She quickly worked her way back up to the 150mg. She started taking the 100mg every other day, then every day, then the 150mg every other day, then 150mg every day. She is doing much better on it now. She still gets the mouth sores sometimes but now they last for a shorter period of time and she wanted to maintain the 150mg because she has heard of so many success stories about Tarceva. If you can endure the side effects, all the advice we have gotten is stay the course with the treatment...I'll keep you posted as my mom has her first scan since starting the Tarceva, in the beginning of November.
Best wishes to you
Terri

By drawing3d
Posted October 19, 2009 at 9:58 am
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No, I didn't. Did you say something "radical" that caused them to boot your post? hahaha

Feel free to send me a private message or repost... I would really like to hear about your mom. She's a special lady.
Love,
Ellen

By GerrysGirl
Posted October 19, 2009 at 3:00 pm
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I did not say anything radical...I must not have pressed "post" though. I just said that it was great to hear from you! I hope you are doing well. My mom is doing pretty well. The side effects are tough, but she realizes that it is a means to an end.
I am sure she would love to hear from you. Give her a call when you get a minute - she really enjoyed talking to you. Let me know if you need her number.
Please keep in touch and let me know how you are doing.
God Bless you Ellen!
Terri

By sandyg2
Posted October 20, 2009 at 7:33 pm
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My doctor took me off Tarceva on 09/15, and I was down to 50 mg..bad side effects. Doctor told me that they would not get better and 50 mg not enough to take. The side effects have just gone away, and I started Alimta today...I couldn't stay on Tarceva being as sick as I was from it. The worst was the shortness of breath and the burning peeling face! Oh, and the diarrhea and buring mouth, fatigue, loss of appetite. I am also still working, so it's hard to feel like that at work. I really do wish I could have kept taking it, because I have heard such could things about it.

By Braided
Posted October 21, 2009 at 2:43 pm
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Hi, My wife has NSLC stage IV and taking tarceva 150mg/day- first was terrible with cracking at fingers, rash everyhwere in her body- look the legs are red but getting muhc better after couple weeks. Some reserach said rash is good response to treatment- You can use Eucerin to avoid dry skin, clinomycin gel 1% to prevent infections. Wish you getting well

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