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Posted

Hi All,

I rote some time ago as mch566 - but it's been a while and I needed to re-register.

I was diagnosed in May with NSCLC with mets to bone and brain. I recd radiation for the bone in CA, and then moved to FL. Here I am being treated at Moffitt Cancer Center. So far, I have had stereotactic radiation to the brain and I am in a clinical trial fo chemo. I am getting gemcitibine and carboplatin. I get both drugs day 1, only gemcitibine day 8 and nothing day 15. Then day 21 starts a new cycle. They do a CT after every 2 cycles and discontinue if no improvement.

My first CT is 9/19 - and I'm hoping it will show some good. My side effects are some nausea, and achiness as well as fatigue. I also have some depression about wether I will ever fell okay again. I had a really tough withdrawal from decadron after the radiation to the brain.

Anyone who has had experience with the drugs I'm taking, please let me know how it worked for you.

Hope to get on the computer some more now that I'm set up again.

Best to all.

Mary

Posted

Mary,

Glad you are settled now. What insurance do you have? Have you had any problems getting any treatments covered so far? I have no experience with the chemo you mentioned, but just wanted to say welome back.

Leslie

Posted

Welcome back, Mary. No experience with combo you are taking. Lucie is presently on the same schedule as you but her combination is navelbine/gemzar first week, navelbine second week, nothing third week. We can compare notes. Don

Posted

Hi Mary, Welcome back and glad you are getting started on treatments. My first line of treatment was Gemcitabine (Gemzar®) and carboplatin but was not affective for me. I do want to stress everyone is different and get different results. There are also many options (see my profile) available. The only side effects I did have was the first two treatments my platelets dropped (20,000 and 5,000) to a point where I had to get transfusions. They made some adjustments and I did not have a problem after that. Keep us posted. Hope this helps. Prayers for the best. Rich

Posted

Mary,

I wish I had specific info to give you, but it's out of my league.

I hope this course works for you.Check out some of the Survivor stories to see the miracles that take place every day. Good luck to ya!

:) Kelly

Posted

Mary , I assume that you are out of the motel you were in after moving from California. Glad you came back and updated us. Hope your CT on the 19th shows great improvement. Waiting to hear. Donna G

Posted

Mary,

I hope Gemzar and Carbo work as well for you as they did for my mom. However, after 6 (I think) cycles her blood counts plummeted and her onc discontinued the regimen.

~Suz

Posted

Hi marym,

I had chemotherapy in a Phase I clinical trial. Completed 6 cycles. Each 21 day cycle: PS-341 (Velcade) on days 1, 4, 8 & 11; Gemcitabine on days 1 & 8; carboplatin on day 1. Had port installed after swelling of veins. Port was removed after chemo because of blood clot. CT scan showed no change in tumors between cycle 4 and cycle 6. I had trouble with the blood counts and was on Procrit for last 4 cycles. My blood counts are still a little below normal.

At conclusion of chemotherapy: The PET scan showed the lung tumor with max/average SUV’s of 2.8/2.1 and the adrenal tumor with max/average SUV’s of 5.6/4.4. CT showed both tumors shrunk about 50%.

Good luck – hang in there!

Posted

Hi marym,

I had chemotherapy in a Phase I clinical trial. Completed 6 cycles. Each 21 day cycle: PS-341 (Velcade) on days 1, 4, 8 & 11; Gemcitabine on days 1 & 8; carboplatin on day 1. Had port installed after swelling of veins. Port was removed after chemo because of blood clot. CT scan showed no change in tumors between cycle 4 and cycle 6. I had trouble with the blood counts and was on Procrit for last 4 cycles. My blood counts are still a little below normal.

At conclusion of chemotherapy: The PET scan showed the lung tumor with max/average SUV’s of 2.8/2.1 and the adrenal tumor with max/average SUV’s of 5.6/4.4. CT showed both tumors shrunk about 50%.

Good luck – hang in there!

Posted

Hi Mary,

My husband was in a trial at Moffitt also. It was to target the chemo specifically to his tumor. He had 2 tumors, one in the lung, one in the liver. The lung tumor responded very well, however the liver tumor continued to grow. He had a total of 4 cycles (gemcitibine and docetaxel). His onc. is Dr. Chiappori. He has been very willing to work with us. Unfortunatley, he now has multiple tumors in his liver and a couple of small tumors in his lungs. His liver tumors do not seem to respond to any chemo. He just started Tarceva and Avastin. He is the first patient there to get this combo (at our request). Hopefully, this will be the "magic bullet". I hope your combination works for you. Please let me know if you have any ? about Moffitt that I can help with.

Karen H

Posted

Hi Mary: I completed 4 rounds of gemzar/carboplatin July 6 of this year. I had very minimal side effects. I was told to drink lots of water since that helps alleviate much of the achiness. My treatment was intended as a followup to surgery. I had no apparent cancer during the chemo. My last ct scan showed me to be cancer free. I don't know if the chemo made a difference, but I like to think it did.

Don M

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