Tarceva And Side Effects

Hi everyone, I have been on Tarceva since Feb. and had stage 4 nscl in both lungs. I had a CT scan in June and again in Aug that confirms the tumors in my lungs are no longer visible! The radiologist even questioned the oncologist as to whether the cancer diagnosis was right. Unfortunately 2 different treatment centers have read the biopsy slides and it is cancer. My oncologist is "cautiously optimistic", my husband and I are elated. I know it is a maintenence drug and the cancer could come back at any time. My question is, has anyone else had these results? The other patients my oncologist has on Tarceva have only kept their tumors from growing. I am still taking it and it has run through ALL the side effects. The face rash is under control, I had water blisters appear on my toes, I still get diahrea several times a week, and the newest thing is sores on my head. They are crusty oozing bumps in my hair. Anyone have any remedy for this? They don't hurt, but do itch.

WOW! That is incredible news!!! Congrats! Your news is inspiring and provides a lot of hope....

I have been on Tarceva (150 mg) since 5/19/05. Initially, my lung tumor shrank 15%. As of my last CAT scan in August, my tumor has stabilized. And, yes, I too am experiencing ALL of the side effects of Tarceva. But as you say, it is worth it! I just started experiencing the "blisters" on my toes - they are quite painful. Although I do not have sores on my head yet, my hair is thinning out.

Do you know if you have the EGFR mutation? And what treatment center are you going to?

Thanks for sharing your GOOD NEWS and keep us posted... - Kim

I have not been told I have an EFGR mutation but have been told if my cancer does mutate then the Tarceva has become ineffective and at that time hopefully there will be something else. I started with one tumor in the upper lobe of the left lung a year ago, had the lobe removed and 4 rounds of chemo. The oncologist thought it was an easy case. I was never a smoker etc. then 3 months later at my first check-up the CT scan showed small tumors all over both lungs. I am being treated in Fargo, ND at the Roger Maris Cancer Center and they sent me to Mayo in Rochester for a second opinion before starting Tarceva. Mayo said with the rapidity of the spread of the cancer, that was my only option. In June of this year I went to Midwestern Regional Medical Center in Zion, IL for an evaluation. I was just worried I was not doing enough. They spent 4 days doing scans and evaluations and were the first to find the tumors were not visible. In Aug at my oncologist in Fargo it was confirmed. I am being realistic when I say it probably is not a cure, but at this point I don't care, it allows me to feel fine and continue working and leading an active life. I'll buy all the time I can get.

I still have slight outbreaks of acne on my face and arms and the blisters have run their course it seems. But the sores in my nose and on my head are really bothersome and hurt. I am on a low grade antibiotic for them (minicycline)but it doesn't seem to help much. My hair came back in thicker after chemo and has stayed the same so far. Pubic hair though has thinned out to next to none. Some real strange side effects!
I will pray for your continued good luck with the Tarceva.
susan

My doctor at MD Anderson told me the same thing - that I will continue taking Tarceva until I develop a 2nd mutation. And, like you, I'm hoping that the Tarceva will work long enough for the doctors to develop something to combat the 2nd mutation. I have my next CAT scan the first week of November, so I will let you know.... Keep me posted.
- Kim

I am also taking tarceva since 1/29/05. I was diagnosed with stage IIIB nsclc in Sept 04. I am a non-smoker and the only symptom was a cough for a few weeks and shortness of breath. A cat scan showed a 4cm tumor in the upper left lung surrounding aortic arch and fluid in sac around my heart and it was inoperable. I went through 2 rounds of chemo with no change to the cancer. In Jan I had pneumonia and started having problems talking and was very short of breath.My left vocal cord was parelized and I couldn't walk 10 feet without being out of breath. I was in pretty bad shape. Then my doctor at Kaiser in So CA put me on tarceva. With that wonderful medicine and lots of prayer my next cat scan in late April showed the tumor only present on a microscopic level. I had minor side effects (rash on chin & slight diahrea which seems to come when I eat a high fat meal). I also have the sores in my nose & hadn't realized it was a side effect

Didn't know I was limited space. I had follow-up cat scan in Aug that showed I have three new densities in my same lung. No mets anywhere else. Did a 2nd cat in Sept that showed same so Dr is continueing tarceva. He thinks it will still fight cancer-didn't mention it could mutate. I still feel great but have noticed some shortness of breath. My chin continues to break out & Dr said that is a marker that tarceva is working. Also it works better in non-smokers. I still believe my quality of life is greatly improved on tarceva. Has anyone else had the tumors recur? What did Dr recomend? I have never had a 2nd opinion.

I was interested in your evaluation from Zion. My husband has an appointment in Oct at the facility in Tulsa, OK. I had read that they might be considered a Quack. My husband has nsclc since Aug 2003 in the IV stage and was only given 6 weeks to live without treatment. He has had various types of chemo (about 5 or 6 kinds) and is still doing good, but has had severe weakness at times but now is on Alimta (2 treatments). At times he is able to play 18 holes of golf, but seems to be doing very well with Alimta. The other chemos he was on is as follows: Carboplatin or Paclitaxel, Gemcitabine, Camtosar, Carboplatin with Vinorelbine. We have since changed from the doctor that ran his own office and worked alone to MD Anderson in Orlando, FL. MD Anderson put him on Altimta and we hope that being evaluated by Cancer Treatment Centers of America in Tulsa, he will get good proof that the Alimta is working. He was a semi driver and a light smoker, plus possibly the enviornment of the gas fuels of traffic may have contributed to the cancer. Otherwise he has been very healthy. Any one else out that been on the strong chemos listed above. No doubt they have helped him, but the weakness at times caused him to be on a walker and even not able to walk at times. We are truely thankful that he is doing good and still here and we are well aware cancer must be attack strongly. Plus, we have had a lot of prayer.

I was skeptical about the center, but had several people recommend them. My health insurance threw up a red flag, but in the end they paid all of the $17000.00 in charges. They treat you wonderful but at times it seemed a little dragged out. I was scanned from top to bottom and had just had some of the same scans a few months prior so I thought they were just wanting the money from the scans. In the end, they concurred with my treatment and said since the tumors were not visible, they could not recommend another treatment option. The other patients we met there were like family members by the end of the week. I still email several of them and we all pray for each other. Being picked up at the airport in Chicago in a stretch limo I thought was a little excessive, I'm sure they are overcharging like crazy, but then I find similar overcharging at my local treatment center.
I do know they turn away patients without health insurance which I find a little disturbing also, but they do some techniques that other centers have not used yet and they work. You will have to make up your own mind, it did end up giving me peace of mind which Mayo Clinic had not done, they essentially sent me back to my local treatment center and said that was all that could be done.
Good luck, I will pray for your husband and for you.
Susan

I have just read on this message board about the blisters on toes...but has anyone ever had sores on their fingers? I have five fingers that have very painful cuts (like you get in winter) and have had them for over 8 days. They each have bled at one time or another.

Is this a symptom of Tarceva? I have been taking Tarceva for the past 2 1/2 months. I've gone through the nose rash - chin rash and now notice some bumps on my head which I thought were mosquito bites, but they don't itch.

I also have the beginning of one more sore on my right foot.

Thanks for any help. Jeanne

Yes, I had the painful sores on the ends of my fingers, like paper cuts only worse. Thought they were gone in the spring, had only a few all summer, but now I have a total of 5 fingers affected on both hands and they seem to be getting worse. I had tried "new skin" to protect the cuts (yes they split and bleed when you use your hands)but that burns pretty bad and really doesn't help much. I am a family and consumer science teacher and often have my hands in water, that doesn't help. My husband tries to wash the dishes when he can at home, otherwise I have to try to wear gloves when I wash. The sores on my head are itchy, but when they first started, they were just bumps, and didn't itch. Now they are all over my scalp and itch. BUT, these problems plus a little diarhea, rash on my face and blisters on my toes are not too much bother when the Tarceva has made my tumors shrink so they are not picked up on a scan. Hang in there.