› Forums › General Melanoma Community › Travel to Moffitt, Ipi and PD1 trials
- This topic has 30 replies, 8 voices, and was last updated 10 years, 6 months ago by
Pegc2.
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- July 2, 2013 at 2:51 pm
We are going to Moffitt next week for a consult with Dr. Weber. Just wondering if anyone out there has any tips we should know about. We are planning to fly to Tampa and back to Atlanta in a day so I am guessing renting a car would be our best option for transportation?
We are going to Moffitt next week for a consult with Dr. Weber. Just wondering if anyone out there has any tips we should know about. We are planning to fly to Tampa and back to Atlanta in a day so I am guessing renting a car would be our best option for transportation?
As far as the melanoma goes – my husband has been on a Zelboraf/Yervoy trial. He has finished his 3rd infusion at 10mg/kg. Fatigue has been his main side effect, however in the past two weeks he has had a LOT of hip & lower back pain with some muscle weakness and numbness in soles of his feet. He had an MRI of the lower back yesterday, and nothing abnormal was seen so they are scheduling him for a full body PET ASAP. Also his bloodwork was ok with only elevation in LDH (I haven't seen the report but don't think it is crazy high). They haven't been able to determine what is causing the pain – nerve inflammation or bone mets or what. So far we haven't seen any improvement and he has new subq tumors. Although I know it is still too early to tell if he is an ipi responder, we are wondering if now is the time to try to get him into a PD1 trial. Guess that's what we will discuss with Dr. Weber.
Thanks again for any information or insights you wonderful folks are willing to share! I will update when we find out more in case our experience helps someone else in future. (I know that we have benefited from many of your posts.)
Tracy
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- July 2, 2013 at 4:23 pm
HiWe have been going yo Moffitt for awhile; however we can drive there. they have vcomplementary valet service at Moffitt so you do not have to search for a parking place. this is so helpful and takes that worry away. the people are do helpful there.
where you will only be there for the day, you may be better off taking a taxi. maybe check with Moffitt or do map quest to determine the distance.
Wish you success with the treatment.
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- July 2, 2013 at 4:23 pm
HiWe have been going yo Moffitt for awhile; however we can drive there. they have vcomplementary valet service at Moffitt so you do not have to search for a parking place. this is so helpful and takes that worry away. the people are do helpful there.
where you will only be there for the day, you may be better off taking a taxi. maybe check with Moffitt or do map quest to determine the distance.
Wish you success with the treatment.
-
- July 2, 2013 at 4:23 pm
HiWe have been going yo Moffitt for awhile; however we can drive there. they have vcomplementary valet service at Moffitt so you do not have to search for a parking place. this is so helpful and takes that worry away. the people are do helpful there.
where you will only be there for the day, you may be better off taking a taxi. maybe check with Moffitt or do map quest to determine the distance.
Wish you success with the treatment.
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- July 2, 2013 at 10:28 pm
Tracy,
I had my first consult down there a few weeks ago. I rented a car from Dollar rental car for I think around $25 a day. They are right outside the airport terminal door (along with about a dozen other agencies). Check out and check in was fairly painless. I'm sure you would pay at least $25 one way for a taxi. As mentioned the valet at Moffitt is no cost (other than tip) and very convenient. Good luck with your consult. Dr. Weber was great during my consult.
Brian
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- July 2, 2013 at 10:28 pm
Tracy,
I had my first consult down there a few weeks ago. I rented a car from Dollar rental car for I think around $25 a day. They are right outside the airport terminal door (along with about a dozen other agencies). Check out and check in was fairly painless. I'm sure you would pay at least $25 one way for a taxi. As mentioned the valet at Moffitt is no cost (other than tip) and very convenient. Good luck with your consult. Dr. Weber was great during my consult.
Brian
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- July 2, 2013 at 10:28 pm
Tracy,
I had my first consult down there a few weeks ago. I rented a car from Dollar rental car for I think around $25 a day. They are right outside the airport terminal door (along with about a dozen other agencies). Check out and check in was fairly painless. I'm sure you would pay at least $25 one way for a taxi. As mentioned the valet at Moffitt is no cost (other than tip) and very convenient. Good luck with your consult. Dr. Weber was great during my consult.
Brian
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- July 3, 2013 at 1:07 am
Tracy,
I am a patient of Dr. Weber's at Moffitt. I've been a patient of his since 2008. I live locally. The drive from TIA (Tampa airport) to Moffitt shouldn't take more than 30 minutes and is direct/easy to find. If you have any questions about Moffitt, please feel free to email me. ([email protected]). I have always found the staff to be very helpful. It's a busy place.
Let us know how it goes.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- July 3, 2013 at 1:07 am
Tracy,
I am a patient of Dr. Weber's at Moffitt. I've been a patient of his since 2008. I live locally. The drive from TIA (Tampa airport) to Moffitt shouldn't take more than 30 minutes and is direct/easy to find. If you have any questions about Moffitt, please feel free to email me. ([email protected]). I have always found the staff to be very helpful. It's a busy place.
Let us know how it goes.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- July 3, 2013 at 1:07 am
Tracy,
I am a patient of Dr. Weber's at Moffitt. I've been a patient of his since 2008. I live locally. The drive from TIA (Tampa airport) to Moffitt shouldn't take more than 30 minutes and is direct/easy to find. If you have any questions about Moffitt, please feel free to email me. ([email protected]). I have always found the staff to be very helpful. It's a busy place.
Let us know how it goes.
Stay Strong
King/KathieStage IV 7/05 Liver mets
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- July 3, 2013 at 1:21 am
Hi Tracy,
I traveled to Moffitt for 2 1/2 years in an anti-PD1 trial from Chattanooga….flying out of Atlanta. My story is on my blog. But, if you have questions you can email me. I have to return in September for post trial f/u, but that will be my last trip. I wish you the very best. Celeste
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- July 3, 2013 at 1:21 am
Hi Tracy,
I traveled to Moffitt for 2 1/2 years in an anti-PD1 trial from Chattanooga….flying out of Atlanta. My story is on my blog. But, if you have questions you can email me. I have to return in September for post trial f/u, but that will be my last trip. I wish you the very best. Celeste
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- July 3, 2013 at 1:21 am
Hi Tracy,
I traveled to Moffitt for 2 1/2 years in an anti-PD1 trial from Chattanooga….flying out of Atlanta. My story is on my blog. But, if you have questions you can email me. I have to return in September for post trial f/u, but that will be my last trip. I wish you the very best. Celeste
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- October 22, 2013 at 5:22 am
TRying to get some info for a friend. Her husband has been in a PD-1 clinical trial about two yrs..
His scans show no more tumors or any other sign of cancer. The trial closed a couple of months ago but he will continue his treatments for another year.
He is very fatiqued and suffers from sores that itch something fierce.
Does anyone have any other information about the results of the PD-1 trials?
My friend is being treated in Los Angeles, Ca.
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- October 22, 2013 at 5:22 am
TRying to get some info for a friend. Her husband has been in a PD-1 clinical trial about two yrs..
His scans show no more tumors or any other sign of cancer. The trial closed a couple of months ago but he will continue his treatments for another year.
He is very fatiqued and suffers from sores that itch something fierce.
Does anyone have any other information about the results of the PD-1 trials?
My friend is being treated in Los Angeles, Ca.
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- October 22, 2013 at 5:22 am
TRying to get some info for a friend. Her husband has been in a PD-1 clinical trial about two yrs..
His scans show no more tumors or any other sign of cancer. The trial closed a couple of months ago but he will continue his treatments for another year.
He is very fatiqued and suffers from sores that itch something fierce.
Does anyone have any other information about the results of the PD-1 trials?
My friend is being treated in Los Angeles, Ca.
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- July 4, 2013 at 11:47 am
Thank you for your responses and the info. Unfortunately we found out the other issues (pain, weakness in muscles etc is being caused by leptomeningeal disease so they did more scans yesterday so we can get more information. Still planning on keeping that appt at Moffitt… just feel this is a set back and will make travelling a little more challenging.
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- July 4, 2013 at 11:47 am
Thank you for your responses and the info. Unfortunately we found out the other issues (pain, weakness in muscles etc is being caused by leptomeningeal disease so they did more scans yesterday so we can get more information. Still planning on keeping that appt at Moffitt… just feel this is a set back and will make travelling a little more challenging.
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- July 4, 2013 at 11:47 am
Thank you for your responses and the info. Unfortunately we found out the other issues (pain, weakness in muscles etc is being caused by leptomeningeal disease so they did more scans yesterday so we can get more information. Still planning on keeping that appt at Moffitt… just feel this is a set back and will make travelling a little more challenging.
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- July 4, 2013 at 6:11 pm
Tracy,
I am so sorry tohear this news.
Are you saying that your husband has the same condition as ValerieHarper?
Wishing you boththe best,
MaryBeth
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- July 4, 2013 at 6:11 pm
Tracy,
I am so sorry tohear this news.
Are you saying that your husband has the same condition as ValerieHarper?
Wishing you boththe best,
MaryBeth
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- July 4, 2013 at 6:11 pm
Tracy,
I am so sorry tohear this news.
Are you saying that your husband has the same condition as ValerieHarper?
Wishing you boththe best,
MaryBeth
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- July 4, 2013 at 8:27 pm
Yes, the radiologists report says "leptomeningeal carcinomatosis from mestatic melanoma." Apparently it isn't all that common because I cannot find a lot of information about it. This was from a report on an MRI done only on the lumbar area of his back. They did a full body PET yesterday which we do not have the results from, but an MRI was done the previous week and that looked fine. As far as we know the involvement is with the spine at this time. He was put back on Zelboraf. Praying for a miracle.
Was Valerie Harper's caused by melanoma?
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- July 4, 2013 at 8:27 pm
Yes, the radiologists report says "leptomeningeal carcinomatosis from mestatic melanoma." Apparently it isn't all that common because I cannot find a lot of information about it. This was from a report on an MRI done only on the lumbar area of his back. They did a full body PET yesterday which we do not have the results from, but an MRI was done the previous week and that looked fine. As far as we know the involvement is with the spine at this time. He was put back on Zelboraf. Praying for a miracle.
Was Valerie Harper's caused by melanoma?
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- July 4, 2013 at 8:27 pm
Yes, the radiologists report says "leptomeningeal carcinomatosis from mestatic melanoma." Apparently it isn't all that common because I cannot find a lot of information about it. This was from a report on an MRI done only on the lumbar area of his back. They did a full body PET yesterday which we do not have the results from, but an MRI was done the previous week and that looked fine. As far as we know the involvement is with the spine at this time. He was put back on Zelboraf. Praying for a miracle.
Was Valerie Harper's caused by melanoma?
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