› Forums › General Melanoma Community › Zelboraf has run its course at abou 10 months, hoping to begin clinical trial next week
- This topic has 27 replies, 7 voices, and was last updated 11 years, 1 month ago by sgrain.
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- March 18, 2013 at 10:27 pm
I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011.
I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011. Feb of 2012 had breathing problems, subsequent scans showed info in first line of this update. Began Zelboraf and hi dose radiation in late feb of last year. had some dosage adjustments intially, ended up taking 3 and 3. Scans were good until Feb of this year when one remaining node that had been the largest began to growand was joined by a 2nd node of the same size in the same lung. My oncologists locally and at OHSU referred me to a Phase I clinical trial at OHSU and have been in the process of being screened for that, more screening this week but i'm scheduled to begin the new treatments a week from this wednesday. The trial is being conducted at the OHSU Knight Cancer Institute. Title is "EMR200066_006: an Open-Label, Phase Ib Dose Escalation Trial of Oral Combination Therapy with MSC1936369B and SAR 245409 in Subjects with Locally Advanced or Metastic Solid Tumors. " the Sponsor is EMD Serono, inc. the drugs are an MEK inhibitor and a combination P13K and mTOR inhibitors.
This trial is also enrolling patients with corresponding breast cancer, Non Small Cell Lung Cancer and Colorectal Cancer. I'm feeling pretty lucky to get into this trial and will post how it rolls out.
I had hoped to be one of those long term responders to Zelboraf because it worked so quikcly and so well for me, I had very few of the side effects, all of which were quite livable but it was not to be.
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- March 18, 2013 at 11:25 pm
What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al
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- March 18, 2013 at 11:25 pm
What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al
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- March 18, 2013 at 11:25 pm
What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al
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- March 19, 2013 at 12:41 am
Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?Thanks and I really do wish you great success with your new trial,
Amy -
- March 19, 2013 at 12:41 am
Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?Thanks and I really do wish you great success with your new trial,
Amy -
- March 19, 2013 at 12:41 am
Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?Thanks and I really do wish you great success with your new trial,
Amy-
- March 19, 2013 at 4:17 am
Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping. -
- March 19, 2013 at 4:17 am
Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping. -
- March 19, 2013 at 4:17 am
Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping.
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- March 19, 2013 at 2:39 am
Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
Holly -
- March 19, 2013 at 2:39 am
Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
Holly -
- March 19, 2013 at 2:39 am
Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
Holly -
- March 22, 2013 at 1:36 pm
Very sorry to hear about Zelboraf but want to wish you the best on your new path.
Dick
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- March 24, 2013 at 12:23 am
Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf. -
- March 24, 2013 at 12:23 am
Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf. -
- March 24, 2013 at 12:23 am
Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf.
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- March 29, 2013 at 2:00 am
So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response. I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday. Some tumors have reduced and some even disappeared but fear I will be in your boat soon.
I will definitely be looking into the trial you mentioned and will follow your posts from here on. I truly hope this trial is successful and shows promise for the long haul.
There just has to be some good news for us fighting this nasty battle! Best wishes.
Sandy
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- March 29, 2013 at 2:00 am
So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response. I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday. Some tumors have reduced and some even disappeared but fear I will be in your boat soon.
I will definitely be looking into the trial you mentioned and will follow your posts from here on. I truly hope this trial is successful and shows promise for the long haul.
There just has to be some good news for us fighting this nasty battle! Best wishes.
Sandy
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- March 29, 2013 at 2:00 am
So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response. I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday. Some tumors have reduced and some even disappeared but fear I will be in your boat soon.
I will definitely be looking into the trial you mentioned and will follow your posts from here on. I truly hope this trial is successful and shows promise for the long haul.
There just has to be some good news for us fighting this nasty battle! Best wishes.
Sandy
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