Need to hear from any and all Tarceva Users....need help!

• By Marylou1
• Posted November 2, 2009 at 9:43 pm
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Hi Janet:

You didn't say how long your husband was on Tarceva before this breakout. If it's bad, it usually happens quickly, like in a week to 10 days.

The best thing I can do is describe my problem. I woke up on day 6 with the worst possible sun burn looking face I have ever seen. It was burning fire and stretched out tight that I looked like a Manatee.

I went to the freezer and grabbed some ice packs and wrapped them in a towel and put them on my face. That did help a bit but here it was the weekend and what to do??

So, with Ice pack in hand, I started to search the internet and only found one place, Christine Stewart's Practical Trueisms, Tarceva Skin.

Christine suggested that the face needed to be cleansed with a mild soap, and rubbed with a wash cloth (I use an exfoliant) and hydrated with a lot of warm water, then spread the face with Sweet Almond Oil (you can get it at GNC and other Health food Stores). Christine also included the Eucerin Cream, the one in the large jar, not the lotion. That can be bought at Walmart, CVS, Walgreens, etc. The instructions continued, once the almond oil has been absorbed by the skin, then spread a thick layer of Eucerin cream on top of it. You will not believe how much relieve he will get from this.

I gave my hubby my little shopping list and off he went. It was not hard to find these 2 products and I did exactly what Christine said. I could not tell you the relief I got from those 2 products over the weekend.

I continue to use them today, however, since you said your hubby's rash was so bad I cannot help but wonder if anyone checked to see if it is a Grade 4 rash. That's what I had and the worst kind. Very Dangerous, and can go into super infection.

It's a good idea to see a Dermatologisit when taking Tarceva, however I have not but have discovered something recently. In the past when my rash got out of hand, my Oncologist had me back it off and then start it up again.

Some things that will make the rash worse are not staying hydrated and being in the sun especially without sunblock and a hat. Also, not staying hydrated will absolutely wear you out.

Tarceva seems to suck the water right out of your body. It will make the skin on your fingers and toes split, and even the bottom of your feet peel like an onion.

I am glad hubby is trying an oral antibiotic but it did not help me much. Clindamycin gel is an antibiotic gel in a tube, but you can only use it on very bad places because it is too drying. I get those very sore pustules inside my nose and the clindamycin goes onto a q-tip and up my nose which is a real blessing.

You mentioned a steroid ointment but did not say how long he was using it. The reason I mention this is I have had a very bad October with sinus infections, colds and a viral break out in my mouth. It has kept my Primary Doctor and my Oncologist on their toes.

Well, last Wednesday when I was seeing my Oncologist he had my primary doctor on the phone. They decided to put me on Prednisone (oral) starting out at 60 mg and reducing after 4 days. Along with that, I was put on Valtrax for the viral infection in my mouth and also Doxycycline since the Leviquin did no good.

Janet, 2 days after I started the Prednisone, my rash was GONE, completely gone! I don't have a spot anywhere! Not on my face, arms, neck, chest, legs or feet.

I know it's impossible to stay on high doses of Prednisone for any length of time, but I will need to see my Oncologist again next month, and I will be talking to him about it then.

A few more things that you might want to jot down in case your husband breaks out in any mouth sores. My Oncologist gave me a prescription for Lidocaine 2% liquid. The recipe was a tablespoon of Lidocaine and a tablespoon of Liquid Benedryl in 8 ounces of water. It is a mouth wash and will give some relief to the mouth.

Another thing I found at Walmart was Benedryl Itch Stopping Gel in a 4 oz. bottle, around $5.00 and worth every penny. I sometimes get itching on my back that I scratch and will draw blood.

As time goes on, some of the side effects do subside and you can learn to deal with them. Some Oncologists will back off your dosage for a few days and then restart. That is what mine was doing, so when I got bad, I did the same thing.

However, I did want to point out the Prednisone oral pills and also to ask either the Dermatologist or hubby's Oncologist if this could be a Grade 4 rash or a super infection. I sure hope not but best to catch it now. Hope I have helped somehow. I know this is a lot all a once.

Love to all,
Marylou

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• By beckylynn
• Posted November 3, 2009 at 1:02 am
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Janet, I understand when you get the RASH it's working. One thing he could do is possible have his dr. reduce the inital amount down to 100mg if he's currently @ 150mg. I know some folks on this site are on 75 mg. and then have him gradually increase it instead of starting right at 150mg?

I hope the info Marylou gave you will help bring some relief to him.

Becky

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• By annie56
• Posted November 3, 2009 at 5:09 am
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my husband has been on tarceva since 9/8/09 -got that horrible rash and zits- got the ointment and wasfine. he is on 150 mg. on 10/8/09 he told his onc. that he feels the 150mg is too strong for him.. and asked if it could be lowered onc. said absolutely not- you're still here aren't u. now it has been another month on it and he is absolutely dying from it. since sunday he cant eat, he's extremely weak and fatigued. he says today he will cal to see the dr. our appt is not until 11/9/09 i told him he will be dead by monday if he doesnt get help and get this reduced. I told him not to take it last night. I do not like his onc. or the facililty from day one... but he does its convenient thats what i think. I dont like drs attitude-he rushes us in and out...my husb says he does not care how they treat him or talk to him he is there for treatment not for sympahty and friendship. even the chemo nurses arent too overly friendly
Hopefully dr will reduce the dosage and see if this helps.

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• By jdmo
• Posted November 3, 2009 at 6:26 am
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Thanks to all.....and especially you Mary Lou for all the details. He has only been on since last sunday......rash started within 3 days....but got very severe by day 5......the derm didnt say if it was a grade 4 rash......i will call the onc today and make an appt for Mark to see him now in addition to yesterdays visit to Sloans Derm. He first used the Clindamycin, but that seemed to be the worst culpirt making buring and itching even worse....we just got the steroid ointment on sunday.....and can only use twice a day. I have NEVER seen such fatigue either......I look for the things you mention above in addition to the Cephacil lotion which the Derm recmommended.

Will see what the ONC says.....and thanks again for writing......
Boy, after surgery, chemo, and radiation, we thought we were on the homestretch....and this isnt even for cure as he is supposedly cancer free ....this is for maintenance!!!! UGH!!!

Thanks again.
janet

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• By robinhood
• Posted November 3, 2009 at 7:12 am
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Marylou gave you some good advice about the rash as for the fatigue, when does he take Tarceva? I take it at bedtime - two hours after a meal and remember (no grapefruit or grapefruit juice )- and that seems to help with the fatigue. At first I took in the am and by 2pm I was wiped out.

Help hubby stay moisturized every inch of his body will need to be. Pay special attention to the nails hands and feet because the skin around them can dry and split. I have to use artificial tears as my eyes get dry. I never had much of a rash, the drug can affect us differently, my main complaint is the diaherra. After a year on 150mg. the doctor reduced it to 100mg and that has helped a bit.

Again, as Marylou said, as time passes the body begins to adjust to the drug and hopefully the side affects will be less severe.

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• By momshere
• Posted November 3, 2009 at 9:36 am
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Hang in there and be sure to write everything down and review it with your doctor....you're right to come to this site for help...my daughter had/has many side effects from her Traceva medication...150 mg daily..she battles them with valor knowing that theTarceva is working to keep her stable.
She's chosen to stay on the 150 mg even tho they talked about lessening the dose...again...as others have said...your body will begin to accept and adjust to the Tarceva and hopefully the side effects will lesson and the Tarceva will continue to do it's job.
Keep the faith

Donna Lee...Michele's mom

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• By radar212
• Posted November 3, 2009 at 10:06 am
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I had the rash start on day 8 and it was awful. My onc had alraedy given me a prescription clindamycin gel for it. So I started immediately with eucerien cream for the dry skin. It is like a miracle. I also cleanse twice a day with cetaphil. You must star out of the sun. Wear a hat at all times in the car and outside to shield the face.
Hope this helps,

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• By PattyLynn
• Posted November 3, 2009 at 12:03 pm
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I have been on Tarceva since March 2009. The rash started by the end of the first week and was awful mostly on my face - red irritated skin, large pustules - it looked like I had a severe case of acne. I used the creams and kept the skin hydrated and it gradually subsided. Once I got past the face rash I started with intense painful itching on the rest of my body. I took antihistamines until it also subsided. Again making sure that I used the creams and remained hydrated.

Now I only experience some redness in the face and small pustules when exposed to the sun or when under a lot of stress. Be sure to always wear a hat and sunscreen when outdoors. And STAY HYDRATED. You may want to request Ativan or Xanax from the doctor to control the anxiety because all that stress exacerbates the side effects.

For the fatigue I would recommend trying to take it at a different time. I normally take mine as soon as get home from work (5 ish) which is more than 2 hrs after lunch and I just be sure to wait an hour before I have dinner. I was taking it before I went to bed but I didn't like the fact that I couldn't snack if I wanted to late in the evening.

As others have said, if the side effects are too severe to deal with initially the oncologist will normally either reduce the dosage until the body can adjust or stop them for a few days and then wean back on them. The oncologists would like to have the patient take the max dosage but it is proven to be effective at lower doses as well. So if the oncologist says that it is 150mg or nothing - I would seek a different doctor.

Pat

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• By mkubee
• Posted November 3, 2009 at 12:09 pm
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Yep... hang in there, it gets better. My mother's oncologist told her, she would get a little rash... her exact words, 'the only side effect is a little acne' --oh brother, what's wrong with these doctors? I was on conference call for this particular appointment and that didn't sound right to me, so I started researching the side effects... and my overall picture came back that it was going to be much worse than ' a little acne.' We were on top of the rash issue from the start and I believe that helped tremendously in making the worse of the rash not so bad... of course she thought it was bad, but I knew that it could be much worse, so I didn't worry about it. The Tarceva side effects require that you be very proactive... don't let it get out of control -- and in certain cases, begin a regimen before the side effects manifest themselves.

The last three months have been very rocky for us, but it seems to be evening out now... my mom has gone from being very mobile, to not being able to walk at all... due to what they're telling us is arthritis, I assure you, it might be arthritis but Tarceva is giving it a helping hand. Bone scan was clear...so be aware of inflammation in joints and muscle pain, stretch out and stay mobile. She's also had a stroke in the last three months she's been on this medication...first inclination, brain mets... it turns out they didn't find anything... our new oncologist said she's coming off the Tarceva if it should happen again, which makes me think it might have had a hand in causing that-- thankfully, the stroke wasn't bad, she's almost fully recovered. We've discovered stretching exercises that have almost resolved all the inflammation in her ankle, as well as squelching some plantar fasciitis and nail bed infections that were trying to crank up in the other foot. She's walking again with no pain ... the rash is very manageable after 3 months -- she only uses the gels now... diarrhea is an issue, but mainly controlled with immodium(the only medication I don't have to pull teeth to get her to take... for good reason too)

I think taking it in the evening like some have mentioned does help the fatigue... my mom does sleep later than she has in the past -- but seems to be up and energized once she's up and going...

We're headed for the big scan tomorrow to see if this stuff is really working -- it's going to be all worth it, if it is...

So stay at it -- research like crazy, many strange things will happen but don't give up on it -- that said, be watchful... side effects of this drug can cascade out of control very quickly... so anything that gets too extreme should be reviewed by the doctor.

Good luck ... I'm sure he'll tough it out just fine.

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• By Mar24
• Posted November 3, 2009 at 8:11 pm
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I have been on Tarceva twice. The first time only a week and a half before severe reaction. Took my dermatologist 8 months to get face back to normal. The second time I tried Tarceva at a lower dose and was fine then all of a sudden I went from a stage 1 rash to a stage 5. It has taken my current dermatologist (which I am sadden, has moved his practice out to New York this week) and I 7 months of trying every type of antibotic, ointments, creams, lotions, fungal medicine. Finally on month 6 after exhausting all other medicines and possiblities he tried Accutane and within just the first month my face cleared up immensly. We were both shocked by the fact that it cleared up so quickly and that Accutane worked on it. Luckily I was very fortanate to work with a dermatologist that is one of the very few leaders in side effects caused on the skin by targeted therapy and chemo drugs. Definately look into Mary Lou's suggestion about the Almond oil and Eucerin. I have heard it working for other people. I wasn't so lucky for it to work for me but other people have been.
Good luck.
Maribeth

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• By jdmo
• Posted November 8, 2009 at 10:18 am
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I wanted to say thank you again to everyone who took the time to repsond and give such helpful information on how to deal with Tarceva side effects. As is turns out Mark had a Grade 3 rash and was advise stop the Tarceva last week. The plan is now to wait for the rash to heal. When it is almost gone, the ONC wants him to start again on lower dose and will then "test the waters" to find the best dose. He said all we really need is "to have a few pimples" on his face to know its working. So for now, he is on Minocycline (oral antibiotic) for 5 weeks, and will start again shortly. He is feeling significantly better now, and we hope to find right does that he can tolerate and still get benefit. Thanks again to everyone.

Janet

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