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Question for Tarceva Users


Barb73

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For the past week, Bill's rash seems to be raging in the sense that it has become extremely itchy.

He has tried all the creams suggested, even has moved to cocoa butter (100%), and still the itch remains.

The doctor gave Bill a prescription for a lesser dose, 100mg (to be used if the rash became too difficult to bear).

This morning, Bill has decided to have that one filled and to see if it will help.

My question is: Has anyone had experience with the lowering of the dose, and was it for a time (temporary) or for the long haul? The effectiveness of a lower dose is a concern.

I thought there was a study taken that a lower dose (don't know how much lower) was as effective.

Your input would be appreciated as Bill has been on Tarceva for 2 months now, and the doctor did mention that the rash sometimes lessens over time on its own.

We wonder if we are jumping the gun by switching the dose at this juncture? He has been practically bathing himself in creams. The biggest problem is that it is keeping him awake at night, and Bill usually sleeps like a log.

Thank you for anything you are able to share.

Barbara

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Hi Barb...I don't have any solid answers for you. Col's rash comes and goes now, as do most of the other side effects from the Tarceva. The rash was difficult to handle for her for a bit, but it did calm down after a bit...Right now her biggest problems is the cracked skin, which is worse because of the cold dry winter air.

As for the dosage, I don't know about that, but I beleive that was offered to Col at one point as well, but she didn't feel the side effects were bad enough to do it. Hopefully after a while the side effects will start to settle down for Bill...Until then, hang in there.

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Hi Barbara,

When I was on Tarceva my rash only lasted (if memory serves me right) about 2 or 3 months and went away on it's own and never came back. I did have severe diarrhea and had the dosage lowered from 150MG to 100MG, stayed on the lower dosage and still had great results. My understanding talking to my doctor that lowering the dosage does not effect the out (can still get good results) come, of course everyone is different. If nothing is working for Bill might want to ask your doctor about lowering the dosage to get some relief. There also is a number you can call Genentech to ask questions, see below.

Contact Us

Clinical Trial Information Support Line

For inquiries about our pipeline products and clinical trials, please submit a request through our information request form or call (888) 662-6728.

Tarceva Access Solutions

Tarceva Access Solutions provides coverage and reimbursement support, patient assistance and informational resources for both health care providers and their patients.

Phone: (888) 249-4918

Fax: (888) 249-4970

Hours Available (Pacific Time): 6AM-5PM M-F

Web: www.TarcevaAccessSolutions.com

Drug Safety / Adverse Events

Contact the Drug Safety Department at OSI Pharmaceuticals at (877) 827-2382 to report any adverse events experienced by patients receiving Tarceva.

Hours Available (Pacific Time): 7:30AM-4:00PM M-F

Voice Mail available 24 hours a day, 7 days a week

Hope this helps,

Rich

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Barbara:

You may have seen this post in Dr.West's "What I Really Do" series, but it might help to look at it again:

http://cancergrace.org/lung/2008/10/22/wird-egfr-rash/

Reducing the Tarceva dose is very commonly done for patients who develop rash bordering on intolerable, as well as stopping the drug entirely for a few days before resuming at a lower dose. Unlike many drugs, it seems there is a correlation between the effectiveness of Tarceva and the severity of side effects (particularly the rash), and those people who get a raging rash on 150mg are very likely to get good results from a dose of 100mg or even lower. Here's an excerpt from the above link:

For more moderate to severe rashes, I add minocycline twice daily, and a few patients start and stop this periodically as needed when their rash flares up. I have rarely added oral steroids, a “Medrol dose pack” that is advocated for severe rashes, mostly because I tend to have people hold it for a few days until the rash has subsided and then restart it at the same or, often, a lower dose of 100 mg per day for tarceva, the main one I’ve been using for the past several years. Most of the time, patients who have a hard time at 150 mg daily do much better with 100 mg per day, but very occasionally I’ve had patients who require a further dose reduction. But because the patients who are most sensitive to the adverse effects of these drugs are also probably most sensitive to the beneficial effects as well, I’d give 50 mg per day to the rare patient who just can’t manage on a higher dose. I’ve even heard of patients on 25 mg per day who managed to continue to respond, and I have a single patient who is struggling even at 50 mg daily (an Asian never-smoking woman, so I’d suspect she may be exquisitely sensitive and benefit from just about any amount she can manage). I’d be happy to have patients continue on the standard dose or the highest below that they can truly tolerate and that is enough to control the cancer, which means maintain a response or keep it from progressing.

Ned

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Hey Barb,

I have been on 100mg now for about 2 years and have had no change. I dont have any side effects often but when they flare up, I take the minocycline to get it under control.

According to one of the founding researchers, the side effects usually last for about 8 months (on and off again). By the time I reached 8 months the rash was not hard to deal with at all.

Hang in there. You may want to see a dermatologist. The scalp itch, she found, was due to a staph infection.

Hope this helps!!

xoxo

Jamie

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JB,

Thank you for the response to my post. It is good to see that there was someone who had experienced this doggone rash, and did get passed it.

Knowing that it may calm down for him (I am reading all of these posts to him) will give him some confidence. Just reading them to him, seemed to put him in a better place.

Your information helped a lot.

Barbara

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Hello Rich,

So glad to receive your post about the lower dosage and the good results.

I know, no one can give the perfect answer to Bill's dilemma (None of us have a crystal ball.), but it still helps to understand what each exerience was.

The contact numbers that you gave have been copied/pasted so that we can get a hold of them. Thank you.

This will be solved, surely. With all the help here, I have a good outlook. The input has helped Bill to balance his options.

Barbara

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Hi again, Ned,

Everything you gave about Dr. West's "What I Really Do" series did help me. I had read some things he wrote concerning Tarceva, but I missed a few things that do make sense re our having a lowering of the dosage.

Whenever we thought about the lower dosage, we thought that it might be the undoing of "good things."

We are looking at it in a different light now, and since his rash is so bad, well....time to reconsider.

Wednesday, we see the oncologist. The scan he wanted was for the neck, which was about the node which stuck out like a small cherry tomato.

The first thing to dwindle was that node - like a barometer.

At this point, I cannot feel it, nor could the doctor a few weeks ago. He looked for it, but it wasn't there. He wanted to take a deeper look.

So, here we go and certainly due to the input from the posts here given to us, we go with much more confidence, and calmness.

Thank you very much. Your efforts have been a gift.

Barbara

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Hello Jamie,

When we go to the oncologist's on Wednesday, I am going to ask him about the minocycline. If he agrees, it may be one very good answer for Bill.

The other, may be to just plain lower the dose. Opting for the most dosage possible, and still get good results is the goal, I think. He may consider Bill's age a factor in his assessment. I don't know.

We don't want Bill to become the poster boy for being martyr to a rash.

He couldn't resist scratching it (despite frequent applications of lotion/cream/bar of cocoa butter). He has been packed in one or more of the concoctions (rubbed in to get it absorbed).

Your help and response is so comforting, Jamie. You know that, I am sure. :D

I have read all the responses to the question, and he stood behind me reading along. He left the room a different and calmer Bill.

Thank you so much.

Barbara

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Hi Barb,

I just wanted to add that I have been on Tarceva for 3 years and have had the dose dropped and increased depending on my current side effects. I usually varied from 100 mg to 150 mg. I have had great results even with the doses being bounced around.

Wendy

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Wendy,

Your experience is good to know. When we are out here thinking back and forth on something, it is a relief to have input.

I am so glad that I asked the question. It has given both Bill and me a better notion on how the dosages can be given.

Thank you, Wendy. The response helps add to our decision making.

BTW, it is wonderful that you have been on Tarceva for three years, with great results. :D

Barbara

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Muriel......

I don't know if this will be of any help to Bill but i recently started Tarceva & did get the rash all over my face.

My onc doc told me that if it happened that he would call in a prescription that would clear it up & take away the itch.

It is called DOXYCYCL HYC 100mg cap. I already notice that the rash is not as angry as it was & the itching is less. For that I thank God.

Take care.....Creekgirl

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Hello Creekgirl,

I received a message in my email where you mentioned that you sent a message to a "Muriel," but meant it for Bill and me.

I understand. Your message is well taken.

May you have much success in your regimen with Tarceva. God bless you.

We are on this road together, and my every wish is for success for all of us. God knows, I pray every single day for something to relieve all of us from this, and send us a soothing balm.

May you receive many blessings. Somehow, I know that Bill and I have received something wonderful - even if it is not a "forever" gift - it is gratefully accepted.

Love,

Barbara

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HI Barb,

You probably already know but there is a tarceva rash skin care guide that is available from the maker of the drug. I wanted to post it here just in case.

www.tarceva.com/docs/Tarceva_Patient_SkinCareGuide.pdf

please keep us posted and I'll be sending positive thoughts and prayers to you both.

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Dear Katie,

We consider positive thoughts and prayers to be very important. There is, in our minds, a connection that has a special power when people pray for someone.

We are not quite sure where this is going. But, wherever it takes us, I hope that we keep receiving the strength that we need for each task in, as Bill calls it, "This job."

Thank you, Katie for the skin care "pamphlet." I saved it to my favorites. Bill seems to think that the Vaseline Intensive Rescue does a pretty good job so with that, and adding the lowering of the dose, we may have an answer. Hope so.

Barbara :D

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Hello Tiny,

I found the replies very helpful, as well.

So glad that you are going to talk to the oncologist about the rash. It is always good to have options, and to know that there is a plan.

Because of having a "head's up" on the rash, thanks to this board, Bill had an easier time than he would have had if he had not prepared for that.

But, he has a more moderate rash now that he has been taking the one whole pill, and then, the next day, taking one-half pill, as per the oncologist's direction.

At the end of this prescription, he will be taking 100mg a day steadily.

The one thing that has been increasing, though, is the diarreah. It may be linked to diet. We need to re-evaluate that.

A closer look as to what he is eating may do the trick, hopefully.

Sorry to be talking so on something unpleasant, but it has been a side effect. :oops: We are working on that aspect, and if possible, will try to lessen that problem.

Good luck and hope you get your options, Tiny.

Barbara

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