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MASS CONFUSTION!!!!!!!!!!!!!!!!!!!!!!!!!!


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I hope this message does not get to long, but it has been a very long month for my family and my mom.

After we got the original ct scan results in mid-october it was decided to put my mom on a clinical trial of Iressa and a Z6747. I have seen that others on the board are on this trial as well. She took Iressa for three days and then was diagnosed with 4 blood clots in her kidney and taken off the trial due to the addition of cumadin. She was then in the hospital for over a week for recovery.

Now, her veins are causing her major problems. They are all sore, swollen, and she can't have an IV. Her arm was swollen for over a week and now her feet are swollen as well with what they call "FLEBITIS" (sp) She remained in bad for over two weeks with this and was not able to have treatment due to bad veins. They can't do a port either because she is on Lovenex and Cumadin -- her blood is too thin for a surgical procedure. She has been batteling blood clots all along -- those have been her major problem, that cancer so far is pretty quiet.

Now, after looking at a radiologist report done on her last CT scan in October, it looks as though her three tumors DID shrink from the chemo combination. We are all very confused and feel helpless.

My mom is in a lot of pain with these bad veins and is scared to do chemo again because of the IV. She also had a bone scan that came back negative, thankfully. That is the only thing that has gone our way so far. She is really hurting and doen'st have much of a quality of life.

SO, now the onc. has left the treatment decision up to her -- she can take Iressa and let her veins/body heal, or she can do the Carbo/Taxotere combo again, but have to be put under for the treatment due to the pain in her veins. WHAT DO YOU GUYS THINK? HAS ANYONE HAD EXPERIENCE WITH THIS? I am very frusterated because I know there are survivors out there, but we can't even get through treatment!!!

Thank you all for listening -- it is so much appreciated!

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Guest Piermarie

My mother has been doing well with the Iressa (not sure yet clinically) as far as feeling good and it's given her a chance to get a break from the chemo. Although she has not had a clotting issue, I would say that if your mom is in pain right now, it might be better to give her body a break and do the Iressa for a bit longer. Once she has stabilized her pain and the phlebitis quiets down, then maybe consider other chemo options. She might end up doing really well with the Iressa too. Just my opinion, but I know that my mom is enjoying this time that she's been feeling "normal" again and able to have an appetite and actually enjoy the TASTE of food.

Either way, best of luck with your mom's course of treatment - I'll be thinking about you....

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When Iressa was suggested for my husband because of failing health do to chemo and radiation we went for a second opinion. He hadn't finish the treatments either. The second Onc. agreed that the side effects of chemo and radiation can do alot of damage with poor quality of life for some people. (chemo hadn't worked either) With Iressa he gained back his health we didn't get the results we wanted but his lungs stayed stable. Now he's back on chemo without all the side effects he had the first time around. Get a second opinion you will feel better about the treatment your mom decides to select. Carolyn

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My mom got taken off of the Gemzar treatment because it wasn't working and yesterday she took her first pill of Iressa. She's had a tiny break from chemo and already starting to get her strength back. I feel some comfort from her going on Iressa knowing that she won't have to sit in the infusion room, make all these trips to the hospital to have the chemo and she may feel a little bit better. Also, Iressa is still fairly new and can be more effective than previously studied in small groups of people in the trial process. There are people on this board who have been stable with Iressa for a year. Since your mom has the history of blood clots I'm not sure what to tell you what to do, but I thought I'd give you the thoughts that are going on in my head to assist you in making the decision.

Take Care and we are here for you.

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Kristy, Im so sorry for all your family is going through. What about a port for the chemo instead of using her veins for IV? My father has a port because they could never find his veins due to so much chemo. Im not saying what you should do, just saying if you decide to go with more chemo, maybe a port is better. Keep us posted.

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