RAD001

Hello, my name is Bonnie, I am 38 yrs old and I am from Mass.

Last Sept. 11,2008 I was diagnosed with neuroendocrine pancreatic cancer which has metasicised to my liver and several different areas of my bones. I was on Temodar for 6 months along with a trial drug called RAD001. So  far my CT scans have showed 38.6% overal shrinkage! I just stopped taking temodar late April 2009, and will continue on RAD001. I have yet to meet anyone on the same study. I hope there's someone out there I can talk to who can relate to me. I am hopeful.

Bonnie,

There is a gentleman named Michael-Pa who posts on the Johns Hopkins pc support group online.  He has just recently returned with his wife Sherrie from Basel, Switzerland, where she has had treatment for her NET.  I suggest you visit that site and either post for him or view his past posts.  He is quite knowledgeable re: NET's.

Good luck.

Joan L

On 5/15/2009 Bonnie G wrote:

Hello, my name is Bonnie, I am 38 yrs old and I am from Mass.

Last Sept. 11,2008 I was diagnosed with neuroendocrine pancreatic cancer which has metasicised to my liver and several different areas of my bones. I was on Temodar for 6 months along with a trial drug called RAD001. So  far my CT scans have showed 38.6% overal shrinkage! I just stopped taking temodar late April 2009, and will continue on RAD001. I have yet to meet anyone on the same study. I hope there's someone out there I can talk to who can relate to me. I am hopeful.

Hi Bonnie, my name is Dawn and I was diagnosed with stage IV neuroendocrine pancreatic cancer in 2007 and I had the Whipple surgery. The cancer had spread to my liver and surrounding lymph nodes. In Dec. of 2007 I entered into a clinical blind trial taking what I hope is RAD001, its either RAD001 or a placibo. I have a ct scan every 3 months and the leisions on the liver have completely disappeared, leaving me and the docs to believe that I am taking the RAD001. The only way to be sure is to go off the trial, but then I wouldn't be able to go back on the trial. With the ct scans showing that the leisions are gone is a wonderful thing. My last 2 ct scans now show spots in the lungs and I'm hoping they will disappear with continueing on this trial and taking the drug. I live in Pa. and I go to Fox Chase Cancer Center for the trial, I have a wonderful doctor there. If you have any questions or just want to talk you can email me at

. I am new to this site and was reading some of the messages and came across yours. Hope to hear from you soon. Take care and God Bless.

 Hello Dawn! So sorry it took so long to get back to you! I don't read my emails often. Wow your story sounds so much like mine. I live in Massachusetts and thankfully close to the best hospitals in Boston. I was originally going to have surgery to remove the tumors on my pancreas and liver. I had an octreotide(sp?) scan the day before sched. surgery. That's when i found out the cancer spread to my bones. With this scan the nuclear med sticks to all cancerous cells in the body. It was not the whipple surgery although I've heard a lot about it. Did you know this type of cancer is fairly rare??? I have a team of wonderful doctors at Mass General. I"m seen every other week but eventually that will change to every 4 weeks. Thank God for the trial meds. But I know what you mean, because it is trial and not FDA approved, if we come off the RAD001 we wouldn't be able to go back on if we needed to be treated again. At least not until it is approved. My Doc's say it should be FDA approved within the next year or so. I've also been getting acupuncture for fatigue and pain. I would highly recommend this to anybody having treatment! Thank you so much for responding to my letter. Write back to me soon. I'd love to hear from you again. Please take care and God bless,

Bonnie

On 7/4/2009 dlm12101 wrote:

 

On 5/15/2009 Bonnie G wrote:

Hello, my name is Bonnie, I am 38 yrs old and I am from Mass.

Last Sept. 11,2008 I was diagnosed with neuroendocrine pancreatic cancer which has metasicised to my liver and several different areas of my bones. I was on Temodar for 6 months along with a trial drug called RAD001. So  far my CT scans have showed 38.6% overal shrinkage! I just stopped taking temodar late April 2009, and will continue on RAD001. I have yet to meet anyone on the same study. I hope there's someone out there I can talk to who can relate to me. I am hopeful.

Hi Bonnie, my name is Dawn and I was diagnosed with stage IV neuroendocrine pancreatic cancer in 2007 and I had the Whipple surgery. The cancer had spread to my liver and surrounding lymph nodes. In Dec. of 2007 I entered into a clinical blind trial taking what I hope is RAD001, its either RAD001 or a placibo. I have a ct scan every 3 months and the leisions on the liver have completely disappeared, leaving me and the docs to believe that I am taking the RAD001. The only way to be sure is to go off the trial, but then I wouldn't be able to go back on the trial. With the ct scans showing that the leisions are gone is a wonderful thing. My last 2 ct scans now show spots in the lungs and I'm hoping they will disappear with continueing on this trial and taking the drug. I live in Pa. and I go to Fox Chase Cancer Center for the trial, I have a wonderful doctor there. If you have any questions or just want to talk you can email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. I am new to this site and was reading some of the messages and came across yours. Hope to hear from you soon. Take care and God Bless.