I think I hate Tarceva

[SBeth]

I think I hate Tarceva. Bill started taking 150 mg of Tarceva daily on July 2nd. At that time he seemed to be doing okay, albeit he was still loosing weight and seemed to be in a somewhat weaker state. He still wanted to get up every day, get a shower and run out on short errands.

For the past two weeks, he has changed. His appetite (and his weight) continue to diminish, he's never very motivated to do much and he says he just feels very sluggish. I know that much of this could be signs or symptoms of depression and we'll address those concerns with his oncologist on Tuesday.

This "so-called" rash from the Tarceva is awful and everyone is 100% correct when they say there is no good way to decribe it...there isn't and as a result of it he's become very self-conscious of his appearance and opts to stay home and secluded despite all of our friends and family who want to visit and spend time with him.

Okay...so that this post isn't all about my griping and whining about Tarceva...I really do have a question. I understand that a sudden increase in shortness of breath is a red flag and reason to contact the doctor; but has anyone experience severe...and I mean really severe hot/cold flashes with Tarceva. One minute we are driving with the air conditioning on in the car and he is sweating so bad his clothes become wet and two minutes later he wants the windows up, air off and actually tried to turn on the heat in the car...and it was over 90 degrees outside. Should we be concerned about this side effect and rush to spend a Friday night or the whole weekend in an urgent care or E.R. for a professional opinion; or do you think it can wait until our appointment on Tuesday? I just feel like many times we know more about the drugs and side effects than the physicians and nurses in E.R.s and don't want to spend our precious time there if we don't have to and quite frankly, I don't think I am prepared to hear that all of this could just be from the progression of the cancer. Aside from the fatigue, malise, rash and flashes...he's okay and wants to wait. What do you all think? And by the way, the hot/cold flashes are not constant, but happen 3-4 times a day when he is exerting himself.

Thanks for any help or advice.

[Snowflake]

Beth,

Sounds like he's going through "the Change"...but seriously....

Have his doctor check his thyroid levels. I think there are quite a few of us here that have kissed our thyroid goodbye with treatment. I've read many posts on hypothyroidism, and I started a few of 'em!

Read up on WebMD or another medical site on the signs/symptoms. Fatigue is one, and when it hit me, it was with the full force of the ol' Guinness truck!

Take care,

Becky

[stand4hope]

Hi Beth,

I think if I had a bad rash from a drug, I would be self-conscious also. When Don had his rash, it was mild, so not enough for him to hide, but if he had enough rash to draw attention to himself, I'm sure he would have become a recluse also.

The entire time Don was on Iressa and Tarceva (maybe 11 months??), he was freezing cold. It was well into the 80s before he would even let me turn on the air conditioner in the house. Even when it was in the 70s, he was sleeping with the electric blanket, wearing heavy clothes and a heavy robe.

Now, he's off Tarceva and getting Alimta, and he's hot and breaking out in a sweat off and on all day and during the night. He will wake up from a nap or during the night with his T-shirt soaked. Today, the onc said the steroids are causing the sweats.

Side note: Since it seems that even with hormones I am in a perpetual state of "hot" with hot flashes and night sweats, it's kind of nice that at least now we aren't fighting over where to set the thermostat. :)

Is Bill taking steroids? Just a thought. I don't know about going to ER, but I think it would be worth a call to his onc or PCP.

How about you, Beth? How are YOU doing?

Love,

Peggy

[Fay A.]

I'm not going to pretend that I am completely accepting of my appearance when "The Rash" is at it's worst. (I AM a girl.) BUT.....the way I look at this most of the time is

1. The Rash Vs Metastatic Spread of the disease. Give me the rash any day.

2. What is the point of going through all of this to try to live longer if we don't spend the time we're given with those we love and enjoy?

Bill, the rash is cyclic....episodes of increase and decrease. Right now I am in a very active rash stage, this time all over my scalp and part of my face, and on one leg behind the knee. I actually went over a month with very little rash, and now it's back, bigtime. The people who stare at me are rude, or curious, and their impolite behavior is more a reflection on them than it is me.

I do the sweating thing, cold and hot, too. Just watch out for fever and/or sudden onset of severe coughing and shortness of breath.

I hope things pick up for both of you.

[Patkid]

Brian runs fevers and get the chills.

He says his skin feels funny..........like he can't stand to have anything touch his skin............

His face is horrible looking (Beth, it is about 2 X worse than the pics I sent you)

Brian spent the last 3 days very very very disconcerted.

Tell Bill we care.

Love

PO

[TAnn]

Listen to Fay A. The rash is cyclic and will start to even out soon. I didn't have the sweats or hot flashes with Tarceva, but have experienced them with the Alimta. I guess it is just proof again that we all react differently to these drugs.

Oh how I wish I could go back on Tarceva now. I haven't had a really good day since my 1st Alimta treatment the beginning of July and now it is time to go back and get # 2. Uggh, I still don't know why we have to suffer so much with the treatments.....

Hope Bill is feeling better soon, tell him to give it a little time, he will get used to it and the side effects will even out soon.

TAnn