@skysar
Forum Replies Created
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- February 11, 2011 at 12:39 am
I can’t provide any info as of today, however, my onc at MDAnderson is adding me to the list for the trial. I had surgery on Jan 3 and fortunately the cells they harvested have taken off and they have enough for the trial. I would also be interested in feedback.Sue
Hotlanta -
- February 11, 2011 at 12:39 am
I can’t provide any info as of today, however, my onc at MDAnderson is adding me to the list for the trial. I had surgery on Jan 3 and fortunately the cells they harvested have taken off and they have enough for the trial. I would also be interested in feedback.Sue
Hotlanta -
- January 27, 2011 at 2:27 pm
I am stage IV and checked out Dr. Weber at Moffitt and also Dr. Patrick Hwu at MDA. Moffitt was offering the IPI trial, however, they had such an overflow of patients they were sending them to MDA in Florida. Dr. Weber suggested I see Dr. Hwu at MDA.
I have been traveling back and forth to MDA since August. We live in Atlanta and was currently treated at Emory. There is no comparison to Emory and MDA. I had a tumor in my chest very close to the IVC, which is the main vein which carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. Emory would not do the surgery.
I started the IPI/Temodar trial at MDA in September and had 4 infusions when the doc decided to pull the treatment. The scans showed that I have some smaller tumors in my right lung which were stable from the treatment, however the largest tumor near the IVC was continuing to grow and Dr. Hwu suggested surgery.
I had surgery on Jan 3. The tumors were all removed successfully and we found out the largest tumor near the IVC was partially dead, which means the treatment was working. I am returning to MDA on Feb 7 for scans and to decide on our next attack. The largest tumor was also collected for possible TIL therapy.
I am overwhelmed by MDA. For me it is the place for treatment.
Let me know if you need additional information.
Sue
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- January 27, 2011 at 2:27 pm
I am stage IV and checked out Dr. Weber at Moffitt and also Dr. Patrick Hwu at MDA. Moffitt was offering the IPI trial, however, they had such an overflow of patients they were sending them to MDA in Florida. Dr. Weber suggested I see Dr. Hwu at MDA.
I have been traveling back and forth to MDA since August. We live in Atlanta and was currently treated at Emory. There is no comparison to Emory and MDA. I had a tumor in my chest very close to the IVC, which is the main vein which carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. Emory would not do the surgery.
I started the IPI/Temodar trial at MDA in September and had 4 infusions when the doc decided to pull the treatment. The scans showed that I have some smaller tumors in my right lung which were stable from the treatment, however the largest tumor near the IVC was continuing to grow and Dr. Hwu suggested surgery.
I had surgery on Jan 3. The tumors were all removed successfully and we found out the largest tumor near the IVC was partially dead, which means the treatment was working. I am returning to MDA on Feb 7 for scans and to decide on our next attack. The largest tumor was also collected for possible TIL therapy.
I am overwhelmed by MDA. For me it is the place for treatment.
Let me know if you need additional information.
Sue
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- November 1, 2010 at 2:30 pm
David:
Congratulations! I am also enrolled in the ipi/temodar trail at MDA. I have a treatment scheduled for 11/10 and then scans scheduled at the end of the month.
I am also having a lot of itching. The zyrtec seems to help somewhat and it seems to get bad at night. Mostly arms, legs, and groin area. I use Sarna Original and that seems to help.
I indicated in one of my replies to Jim in Denver that my Eosinophils are really high. Dr. Patrick Hwu said it might be a good thing due to the fact the body might be attacking. Do you keep track of your lab results?
Again, great news!
Sue
Hotlanta
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- January 27, 2011 at 10:16 pm
Linda:
I have been wondering about you as well. I stopped checking the board last fall. So many individuals passing due to this disease I had to take a break from it.
One of the questions we have for MDA is going back on the same trial. The trip in February is for scans, discussing the next step and a followup with the surgeon.
Yes, we were in Texas when the storm hit and delayed in getting home for 2 nights. We had to switch hotels for the last 2 nights since they were booked and could not extend our stay. Bummer!
I'm still hurting. They had to break a rib. I don't tolerate narcotics very well so for the most part I have been taking tylenol. I did have a couple of good days this week, however. The pain is gradually lessening.
It's good to hear from you. Stay in touch.
Sue
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- January 27, 2011 at 10:16 pm
Linda:
I have been wondering about you as well. I stopped checking the board last fall. So many individuals passing due to this disease I had to take a break from it.
One of the questions we have for MDA is going back on the same trial. The trip in February is for scans, discussing the next step and a followup with the surgeon.
Yes, we were in Texas when the storm hit and delayed in getting home for 2 nights. We had to switch hotels for the last 2 nights since they were booked and could not extend our stay. Bummer!
I'm still hurting. They had to break a rib. I don't tolerate narcotics very well so for the most part I have been taking tylenol. I did have a couple of good days this week, however. The pain is gradually lessening.
It's good to hear from you. Stay in touch.
Sue
