Tarceva Rash Help Needed

I've been on Tarceva for a month now without serious side effects. This morning I woke up and I have a bad rash covering the inside of both arms, my hands are both red and somewhat swollen, there are raised welts around my knees and up the back of my legs and buttocks, and the inside of my thighs have welts that are like 5" in diameter. Good grief!

Is this how others of you taking Tarceva have had the rash appear? It seems quick and extreme to me. I have a call into my onc plus have started Doxycycline. Any advice or experience with this would be appreciated while I wait for a call back. My gut is to suspend taking the Tarceva as it seems almost like an allergic reaction. I know the rash is expected, but I didn't expect this.

Report post

17 replies. Join the discussion

I know for myself I had a pretty bad rash in the beginning. My eyes would get so swollen I would keep a spray water bottle by my bed to spray in my face to lubricate my face and eyes in the morning.
I do remember the rash was worst anywhere my cloths rubbed. There is a lot of information on this site for treating Tarceva rash, but I would get some Eucerin Cream ASAP, it will help with the burning.

PS the good news is it will get better.

Good luck,
Don

Report post

Thanks, Don. I appreciate your feedback. I have the Eucerin lotion but the cream might be better. My eyes are also very dry and I've started using Systane gel in them. Has helped with that but I'll remember the spray bottle trick.

I found that putting the cyclamine gel on the rash is helping. Mostly worried about the swelling of my hands and the inside of the wrists as it seems like an allergic reaction.

I just got off the phone with my nurse who said to keep taking the Tarceva and the Doxycycline. She said if it didn't get better, they would treat it with steroids, but to give the Doxy a chance to work. I hope she is right and that I don't get into more serious medical trouble. Been there already.

Report post

I am so sorry you are going through this! Didn't know you were taking Tarceva, haven't seen you around for a awhile.
I sure dont know anything about the side effects, but Doxy can cause an allergic reaction too.
I have something from our health food store, called ZeoForce, it is of the earth. You can even drink it, it removes metals from the body. It can be used to soak in as well. I add it to my dogs bath when he gets irritation from bites/weeds. HealthForce.com is the site. It smell likes clean dirt, if tha makes sense. Good for skin disorders. I just got the jar, the number is 800-357-2717. Maybe it would help give relief, soak in a tub with it. aaahhhhhh
Feel better friend..
Cindy

Report post

Get the Eucerin (Original) Cream it's the best

Report post

Thanks Cindy. That ZeoForce sounds pretty funky, but I know you are a down-home girl and not afraid to try the unconventional stuff. I'll look into it. Maybe it is like mud from the Red Sea which is good for your skin. I'll be back at MDA at the end of the month for a scan to see if the Tarceva is working. Hope you and Jim are well. Judy

Report post

Judy,
When I was on Tarceva, the 6th day I had a terrible reaction. My face was fire red and so dry and stretched and burning, that I searched the internet for help. It was a Saturday and thought I could find relief. I was very lucky to find a website that unfortunately is no longer there but it was by Christine Stewart. Christine has gone to be an angel, but her idea of treating the Tarceva face worked wonders for me.

The health food stores carry Almond oil. Most all stores including Walmart carry the large jar of Eucerin Cream. The idea was to get into the tub and exfoliate your skin with a very gentle soap. Then get out of the tub pat partially dry and slather the Almond Oil on your face and body where ever you were breaking out. Then apply the Eucerin cream over the Almond Oil.

I was in such misery that I gave my hubby a list and sent him out for these things. He did not fail me and within an hour I had some relief. I would do this every day, but also in between, your face still needs a little moisture because Tarceva is pyrogenic. It will burn up all the fluids in your body very quickly.

It is very important to drink a lot of water. Also, stay away from acidic drinks like orange juice or even acidic foods like spaghetti sauce.

Another thing to remember is to stay out of the sun. Wear a wide brimmed hat if you must be outside in the sun. You will be super sensitive to sunlight which will make matters much worse. Thirty minutes in the sun will absolutely burn you or make your face and skin have huge blotches.

Watch your finger and toe nails. I had to have surgery on my right big toe twice because of how Tarceva was affecting the growth of the toe nail into the skin instead of straight out.

However, when you described WELTS 5 inches in diameter? That is worrysome and frankly I think you should see your doctor. I had a lot of rash in many places but never any WELTS. Please take whatever you feel comfortable from my post but also, please check with your doctor about those welts.
Please don't forget to drink a lot of water. Please keep us posted.
Marylou ♥

Report post

The rash is a good sign- embrace it!!
Use burn shield regularly through the day and
Bepanthonol nappy cream spread thickly at
At night in addittition to the cream you mention.
I used bactraban on my face as well will nappy cream
Was on Tarceva for 3 years. Now on Afatinib and Cetuximab.

10 year cancer survivor
Keep going
Never give up!
Carla

Report post

You're the man, CJRG!

Judy, official welcomes to the Traveca Rash Club! I got mine after two days and they put me on Doxy right away and have now been taking two pills a day for nearly 3 months. The rash has been very minimal ever since. I asked my ONC today if I could reduce it or eliminate it entirely soon so I'll drop it down to 1 dose a day once I get back from Europe and see how I do.

Lastly, I'd double check the ZoeForce if it absorbs and then rids the body of heavy metals. You'd have to be 100% sure it doesn't move the Tarceva out of your system. Tarceva should linger for 36 hours without any outside interference. Not sure the risk/reward is worth taking on there but personal opinion, GL!

Report post

Marylou, Carla and Enricoforex,
Thanks for your helpful comments and mention of problems to look out for. I have been kind of cavalier about being in the sun - I live in Florida - but I'll make sure to cover up when I am. My toenails are still trying to recover from Tarceva and now I can see they are trying to curl so could dig into the skin. Hope I won't need the surgery, but we do what we must do. I'm just grateful this rash didn't hit my face.

To give you an update - Last night, after showering and lotioning, I covered all of the affected areas again with the clindamycin gel. Then I took another dose of Doxycyline. This morning, almost all of the rash is gone from my arms and more than half on my legs, plus the big welts are now smaller red patches. No more swelling in my hands and wrists either. So I'll keep up with the Doxy and gel as they seem to be working quite well. And I did take the Tarceva at 3:00 am, my usual dose time. I'm very pleased and relieved.
From what Enricoforex said, I wonder if I will need to stay on the Doxy for a while.

Report post

Judy,

Great news that a hit of antibiotics had such an immediate result for you. I reckon your oncologist will keep you on the doxy for a while as they strive to give you the higher dose of Tarceva possible that your body can tolerate it. A horrible rash can take you off Tarceva so need to stay on top of it, especially to start things off.

Keep it going!

Report post

Judy,

I do believe you will need to stay on the Doxy every day. If your doctor does not agree, beg, plead, and smile pretty at him so he will give it to you. You had a fantastic reaction practically overnight with the doxy and I don't think you can tolerate Tarceva without it. I have seen this happen with others.

Good Luck,
Marylou ♥

Report post

The doxy does help me. My oncologist told me that I will need to take the doxy for as long as I take Tarceva.

For actual symptoms, the thick stuff like eucerin cream or aquaphor does best and cortisone cream helps to relieve any itching. The almond oil or jojoba oil (or I'm sure there are other things as well) are also very soothing.

I find that the clindamyacin is ok in small occasional uses but is too drying and causes more problem than help for me at least.

Report post

Enricoforex, Marylou, and fhoneymom,

I'm taking the 150 mg dose of Tarceva to see if it will stabilize things for me as I"m EGFR negative. I'll have a san on June 28th to find out if it is working or not.

If it is working, I'll be smiling, even though taking Doxy for a long time doesn't sound so hot. From what you are saying, it may be the only way I can tolerate Tarceva. I'll take it easy on the clindamycin too.

Almong Oil seems to be recommended by a lot of Tarceva users along with the Eucerin cream, so I'll be ready with those for the next round of side effects. Thanks. Glad to know cortisone has helped with the itching. Genentech recommends Renecare for itching, but I found it to be kind of pricey and was wondering about cortisone.

Today, I am almost completely free of any rash and a couple of days ago I looked like a medical book illustration. I don't know why an antibiotic would clear this up, but am glad that it did.

Report post

Judy,
I am SO glad the antibiotic is clearing up so well for you. Hey, if it works that's what is important.

Also, I noticed that one person said if you break out, the Tarceva is working. I hate to tell you but that is not true. There are all kinds of Tarceva reactions, but the only way to know if it's working is the Scan.

I also am EGFR negative and was prescribed Tarceva when my Oncologist thought my cancer was back. I had a PET scan when I was extremely sick with brochitis. I should not have been scanned. The PET showed my congestion as cancer in many places.

PLEASE, never never take a scan when you are sick with a cold. I did not believe my cancer came back but my Oncologist and my hubby bullied me into taking it. I finally got the name of another Oncologist and explained my theory and he sent a piece of my biopsy away and told me to stop taking the Tarceva, it was not doing anything for me. He said you had No evidence of Disease 3 months after that bad scan, and simply got better from the bronchitis.

Will be praying for a great scan on the 28th.
Marylou ♥

Report post

Godivagirl,

I may have asked this before in another disucssion and forgotten, but if you are EGFR negative what *is* the driving mutation of your cancer? Maybe there could be a drug with better odds of benefit than Tarceva?

Best hopes

Report post

Craig,

I have no mutations that showed up with testing. You suggested previously that maybe I should find out if I have ROS1 since you have had such good success being able to use Xalkori. My oncologist has the list of everything tested and I don't think ROS 1 was on that list.

I don't really want to have another biopsy with such a small chance for a positive result. But that is how I feel today. (Might change my mind down the road.) Even though the onc knows I'm totally negative after having my pleural effusion fluid analyzed too, he feels that since I'm a non-smoker with adeno, I have a fair chance (25%?) of the cancer stabilizing, rather than shrinking. That would be cool with me, if it works.

I'll find out if it is working by the 29th. So far, I don't feel the symptoms of a pleural effusion returning. If it doesn't work, it is probably Gemzar or something like that.

Report post

Thank you for reminding me I'd mentioned it before.

FWIW, your oncologist might be more encouraging of testing for ROS1 after seeing the data presented at the big ASCO convention last Saturday since the odds for ROS1 aren't so small once the more common mutations have already been ruled out, especially in a never-smoker adenocarcinoma. In my case my two bronchoscopy biopsy procedures were pretty trivial with no real discomfort or side effects except some chills, so I'd be willing to get one every week if there were any chance it could make a difference, but I do understand it is more difficult or risky for some people.

I apologize for repeating myself.

Best regards,

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Photo of Dave Grant

The Lung Cancer Survivors Support Community has provided support for patients, caregivers, families and friends since 2006. We welcome over 600 new members every month in the fight against lung cancer.

ALK mutations and lung cancer

Join the discussion about ALK mutations and lung cancer

Things you can do

Discussion topics

Community leaders