Journal

Now I am on Tarceva.  I began taking it 3 days ago and this morning I awakened with severe abdominal cramping followed by diahrrea which left me feeling as if I was on the last stage of preparation for a colonoscopy!  During this brief period, I had a little nausea, but it went away once my bowels moved.

From those who have been on Tarceva, I'd like to hear your experiences.  What side effects did you have and how long did they last?  Did you get the rash and if so, when (how many days into treatment), and how long did it last?  What did you treat the rash with?

I know to look for the rash as a sign that this treatment is working, but I don't know when it typically appears or how long it typically lasts.  Of course, like everyone else who uses Tarceva, I am praying for the rash.  If you have followed my story, you know that my chemo (Alimta and Carboplatin) did not work; in fact I had 2 additional tumors in my liver after 2 rounds.  So naturally, I am anxious for Tarceva to work!

Don't hold back.  Give me all the info you can.  There's no such thing as too much information when you are fighting this damned disease!  Thanks!

Today was my scheduled day for chemo.  Based upon my last CT Scan, the tumors are not responding.  The liver tumor is still the same size, and there are 2 additional tumors in the liver.  This is very disappointing news.  Dr. Nse told me many times this morning how disappointed he was and how he had hoped that it had reduced the size of the tumors.  He wants to stop the chemo I was taking.  He will not continue to give me something that toxic if there is no evidence it is working.  He will start me on a chemotherapy pill, Tarceva.  It is taken at home once daily.  An almost certain side effect is a facial rash; he's so certain I'll have it that he prescribed an ointment for it today.  There are other side effects, the most common of which is diarrhea.  Nausea is possible, and, while I'm not to take premeds for nausea, I have a wide variety of anti emetics if I should experience it.  Hair loss, while not common with this drug, is a possibility.

My last blood count showed low hemoglobin (anemia) and that's thought to be the cause of my shortness of breath (along with the removal of one lobe of my right lung last December).  I got a shot today for that, and I'll get one every 3 weeks while taking Tarceva.  Said the shot should help me to feel better by increasing my red blood cells, but it would take a couple of weeks for me to see any improvement.  If my count had been just a little lower, he would have had me have a blood transfusion.  

Dr. Nse plans to have me on Tarceva for two months, barring any severe side effects, and then reevaluate with a scan.  He did say that there are other chemo possibilities should we not get a good result with Tarceva, but that some individuals do get a rather dramatic positive response with it.

I am not feeling bad.  My SOB comes with any exertion, so I do have to be careful when I stand up or walk anywhere.  The SOB causes me to become lightheaded, and I have to ensure that there's a place to sit down should I need to do so in a hurry.  But I'm sleeping well, I don't nap in the daytime, and I'm generally feeling pretty well.  My appetite isn't great, and the Tarceva might make that worse, but I do try to eat because I know it is vital to maintaining strength.  I just wanted you to know that I'm not sick in bed, unable to go out, or anything that drastic.  That day may come, but I'm not ready for it yet.

Of course, I am disappointed.  I could crash, I guess.  But I do have confidence that Dr. Nse is on top of this and that if there is a treatment that will positively affect my cancer, he will find it.  I think he is completely capable of managing my illness with the latest and most effective treatments out there.  That gives me great confidence, not necessarily that there will be a positive outcome, but that if one is possible, I am in capable hands.  What a great blessing that is!!  I feel such positive energy when I'm at the clinic, and a sense that everyone there is committed to healing for all patients.

So I could crash and burn (an Army phrase, the meaning of which is probably obvious), or not.  I will have moments of profound sadness over this, and then I'll get better.  I have cried lots today, and no doubt the tears will flow quite often, but I must go on.  I have no choice really, but to keep trying whatever my doctor advocates for me.  And I will.  With your help and support.  

Share your thoughts and experiences about Tarceva???

Yesterday I had routine blood work done.  I told the lab tech that I was lightheaded and short of breath and she asked if I would wait and see the nurse.  I did, and she checked pulse/ox -O2 was fine, but my pulse was racing - 130 and all I had done was walk from the front waiting area to the infusion center, about 50 feet.  And I was very SOB.  She went away and when she came back she said my oncologist was going to see me.  He listened to my lungs, then said he wanted a CT scan of my lungs to ensure there wasn't another clot.  He cancelled my CT of the belly area that was scheduled for Friday and had them do both lungs and belly area yesterday.  No clot, thank God!  Said to call him today.  He also said that my red cells were low and that could account for SOB.  I've got so many damn strikes against me!  Anyway, he said he didn't want to do a transfusion, so he was going to give me "growth something"?? in the infusion on Tuesday when I'm scheduled for chemo.  Supposed to boost the production of RBC.  My partner thinks he must be talking about Epogen.   

After I left there, I had an appointment with my eye doctor and it's just around the corner.  I was so lightheaded and SOB that when I got in there I couldn't even say my name until I recovered.  Then I began to sweat, which happens when my BP drops too low - I was soaked and it was pouring out of me.  They got me a glass of water and I asked for another.  I have to get new glasses.  My eyes have aged 10 years in the last 6 months, due to chemo!  He said it is not unusual with chemo, and sometimes the vision will revert to where it was when chemo is over.  After I picked out frames (I'll be anxious to see what I picked, I was so out of it), I was getting ready to leave and they wanted me to bring in my insurance cards, which I had left in my wallet in the car.  They saw I was still in distress and one of the receptionists asked if I'd like for her to go with me to the car, get the cards, take them inside to copy them and bring them back.  Of course I said yes.  Then, after about my 3d attempt, I got up and thought I was good to go.  NOT!  I don't know why, but I tripped on the chair leg and splat - down I went, right there in their waiting room, slinging my plastic cup of water all over the floor, all over me, etc.  No one else was there at the time, but I was still so embarrassed.  I was crying and apologizing.  Thank God, I wasn't hurt; I'm just a little sore this morning.  I finally was able to get up, and with the help of one of the gals, get to my car where I got the cards.  Then I had to come home and feed the dogs and be back at the oncology center where I had the CT scans at 1.  The good news - no clot!  Of course the bad news is that I don't know what is causing this shortness of breath and lightheadedness.  I know my BP sometimes falls pretty low, but I don't think that accounts for all of it.  It seems to be getting worse.

Whew!  I'm pooped!