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Tarceva Club...Can We Talk?


Ry

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Karen,

It's a good point and I think you are correct about the dryness. The bleeding is coming from the lung I am pretty sure. Asked him if he thought there was any way it was his sinuses bleeding and coming down the throat to be coughed up also. He gets it approimately every 3 hours just as his cough medicine seems to wear off. He coughs up at least a teaspoon of blood each time he coughs and it appears to be pure blood, not sputum streaked with blood, and bright red, not old blood that would be brown.

I tired to get ahold of our PCP about his bronc, and no luck. The pulmonologist's office is trying to schedule him in 2 weeks and I think its too long to let this go. Trying to see if our PCP will get them to move it up. I am NOT a patient person... :twisted:

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TWO WEEKS!! That's unbelievable! Ry, I would not be patient either. How is John handling this, and how is he feeling?

I'm really hoping that your PCP can do something. I know you've frequently said that you have a good relationship with him, so maybe he can even get it done by another pulmonologist.

Keep us posted.

Love,

Peggy

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Just know that Mike and I are hoping for the best for you guys. Glad you can get into the doctor tomorrow. He sure shouldn't have to wait . I'm thinking that if they just get the meds straight , John will feel better. Maybe they can lower the Tarceva dosage or go back to the Iressa. Keep us informed.

(((Hugs to you both & ur kids)))

Sue

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Ry,

when I cough up blood from the Lungs it's thin and foamy, lot of bubbles. When I cough up blood that has drained from the sinuses it's not foamy and it's thicker. I know these descriptions are kind of gross, but hey. We need to know what it is we're looking at.

Sometimes we can cough up blood from a ruptured blood vessel in our throats. This would not be foamy, either.

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More than late reading the post,

Know nothing about Tarceva, so did not read it before.

Know a lot about itchy rashes, brought on by medication,

have to use *Aveeno, soothing bath treatment for itchy

skin* all year long and after put *Dermabase*

and if it gets too bad I have to use *Diprosone ointment*

otherwise I look like a boiled lobster...and may feel like one.

Good luck and take care.

J.C.

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I figured I better update this as I am getting PM's asking how it went. Well...it didn't. Yesterday we got no word on the appointment being moved up. So as it stands his appt is Mar 4th unless someone cancels. That's the bad news...

The good news is the bleeding seems to be stopping. He didnt' have any last night. So I don't feel so scared now about waiting. I want to tell you all how much we appreciate your concern. It really does mean a lot.

Rochelle

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Talk about being late....

So very sorry to hear how rough things are going for John, and now a long wait for a doctor's appt. Hope your wheel is squeaking loud and long! Glad to hear things are a bit improved.

We talked to Steve's onc last week and he feels Steve should just stay on Iressa because it's worked so well for him so far. I've always thought that he could switch to Tarceva at some point, but after reading all this - wow, I'm not sure about that.

Take care - thinking of you!

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Ry,

I just got back in town and am really sorry to read about John. Please continue to keep us posted and know you are in our prayers. Bob had lots of stomach problems with Tarceva but really was not on it long enough to determine if that was the true problem since he developed another metasis near his ribs.

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Hi Joyce abd Jean~

Joyce, The oncologist said John could go back to the Iressa if he wanted to, so we'll see. I would certainly leave Steve on it as long as you have a choice. The onc on call said the Tarceva should not be the problem...we'll see.

Jean...good to see you! I hope your husband is feeling well.

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Hi Ry,

Wow, please forgive me. Iam so sorry that I did not post to you before this. I just missed your post for some reason. There are so many post on this board, that its hard to keep up at times.

Just want you to know that I am sorry for eveything that you guys are going through. I am really glad at least the bleeding stopped, so that is a good sign.

There are so many posts to both of you, full of so many hopes and prayers being sent out. Keep those positive thoughts going....

I will be thinking of him on the 4th and sending out mediation prayers to him and strength to you.

Please take care,

Maryanne

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Frist of all my very best and prayers to you as you deal with this next challenge ... the process to remission can be just as overwhelming as the process to get to the point of trying something else.

Can I ask why, if things were stable on the Iressa, he was switched to Tarceva? Did the docs think it would be more effective or what was their thoughts.

I'm trying to gather as much info as I can because my doc has given me the choice of Tarceva or Taxotere and I'm just not sure what to do.

Thanks and again you are in my prayers.

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Hi Ry,

That is the best news. Thanks for updating us. I am so glad that he is doing so much better and the anitbiotics is working.

These ups and downs can make you so stressed out. All kinds of life threating thoughts race through one's mind.

So delighted the outcome is positive. :lol:

Thinking of you guys and hope John has a speedy recovery

Maryanne

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Ok, I'm a little late - no, ALOT late on this, but I was a little preoccupied last week with Dave's stuff. Just wanted to say I'm glad John is feeling a little better and I hope like heck it was "just sinuses." Do you have a humidifer in your bedroom? I have chronic sinus problems and a humidifier really works. a heated mist, not cool mist one is what you need - we found out the hard way that cool mist is a bad idea (mold grows in the tank and filter way too easy).

Keeping you and your whole family in my prayers,

Karen

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So glad to hear John is feeling better. I was worried about the blood. How is the Tarceva treating him? Rash or tummy problems more than Iressa? My really dry skin seems to be alot better, so I think it settles down after you've been on it for a while. Tell John to "hang in there!"

TAnn

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  • 5 months later...

Question about Tarceva??? I had a colonoscopy performed yesterday due to bleeding and change in bowel habits(to put it nicely). I have never been diagnosed with Chron's(sp)disease and have never had any problems with my stomach except for occasional constipation. I was taking a supplement called Chlorella, multi-vitamins and the Tarceva. They said they found minor inflammation and are going to biopsy it. The doc did say it was not cancer(WOOHOO). My question is, "Has anyone had similar effects and could the Tarceva be doing this?

Thanks,

Jamie

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I'm tellin' ya, there should be a Tarceva support group on this board!

Mom has had all the mentioned side-effect (complicated by her Crohn's), but even with that we are grateful for it. She cannot do other meds b/c her kidneys barely function and so far *fingers crossed* she has had no growth in any tumors.

Hope John (and all the Tarceva gang) are feeling better soon.

:) Kelly

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