› Forums › General Melanoma Community › How often do you see your doc ?
- This topic has 36 replies, 9 voices, and was last updated 12 years, 11 months ago by
robyn44.
- Post
-
- May 29, 2012 at 9:16 pm
We are traveling to MDA every month. We have to fly Southwest, and have to do hotels, food, exp. etc. – and a cab ride with tip is almost $85.00. Sometimes, we stay up to 3 nights. I don't know how long we'll have to do this. How often do you see your Doc ?
We are traveling to MDA every month. We have to fly Southwest, and have to do hotels, food, exp. etc. – and a cab ride with tip is almost $85.00. Sometimes, we stay up to 3 nights. I don't know how long we'll have to do this. How often do you see your Doc ?
- Replies
-
-
-
- May 29, 2012 at 9:38 pm
You didn't give enough information. It depends on your stage, course of treatment, time elapsed from diagnosis, etc.
If you are participating in a clinical trial, there are usually rigid Dr. visit requirements – consult the consent documents you signed. I'm in a clinical trial and have to do a clinic visit every 4 weeks. I should invest in Southwest stock!
Best wishes,
Harry
-
- May 29, 2012 at 9:38 pm
You didn't give enough information. It depends on your stage, course of treatment, time elapsed from diagnosis, etc.
If you are participating in a clinical trial, there are usually rigid Dr. visit requirements – consult the consent documents you signed. I'm in a clinical trial and have to do a clinic visit every 4 weeks. I should invest in Southwest stock!
Best wishes,
Harry
-
- May 29, 2012 at 9:38 pm
You didn't give enough information. It depends on your stage, course of treatment, time elapsed from diagnosis, etc.
If you are participating in a clinical trial, there are usually rigid Dr. visit requirements – consult the consent documents you signed. I'm in a clinical trial and have to do a clinic visit every 4 weeks. I should invest in Southwest stock!
Best wishes,
Harry
-
- May 30, 2012 at 3:54 am
I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed. I go as often as they tell me they need to see me. I do have local "eyes"but MDA "is the ship captain" as my mel oncologist at MDA states.
I know it can be trying but for me has been well worth it. I hope you have the same experience-
Robyn
-
- May 30, 2012 at 3:54 am
I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed. I go as often as they tell me they need to see me. I do have local "eyes"but MDA "is the ship captain" as my mel oncologist at MDA states.
I know it can be trying but for me has been well worth it. I hope you have the same experience-
Robyn
-
- May 30, 2012 at 3:54 am
I go to MDA every 4- 6 weeks. Fly Southwest, cabs, hotels ect. I have had to stay for up to 3 weeks. It does get expensive but my team there has saved my life! I take a town car from and back to airport. It is only 30.00 each way. Stay in a hotel that has kitchenette and shuttle service. The shuttle will take you to grocery store and to MDA. It helps. Found out on Friday that I am, for the first time in over 3yrs NED. Brain and lung mets. Team was so excited.Neurosurgeon could not stop smiling and called my original surgeon in boston to let him know. I have had 6 crani's, 3 gamma knife, thoracotomy and multiple chemo and radiation. I have heard that the Social Workers will help you locate resources to help absorb some of the costs if needed. I go as often as they tell me they need to see me. I do have local "eyes"but MDA "is the ship captain" as my mel oncologist at MDA states.
I know it can be trying but for me has been well worth it. I hope you have the same experience-
Robyn
-
- May 30, 2012 at 10:02 am
I have talked to folks that go to MDA and they have taken RV's and stay in a park. The way they talk many many people do that…some even take apartments and then go home once in awhile.
We moved to Florida from North Dakota because initially my trial required me to go every other week for 24 weeks and then I go every 3 months now for booster phase of Anti PD 1. Flying and hotels etc was too expensive after a couple months –I am stage 4 and NED so it's worth it…melanoma is life changing.You do what you need to do…not many people can afford to do what we have to do… We left most of our large belongings behind, sold some, gave most away….My husband had to give up his job…it sucks…but I am workth it!
-
- May 30, 2012 at 10:02 am
I have talked to folks that go to MDA and they have taken RV's and stay in a park. The way they talk many many people do that…some even take apartments and then go home once in awhile.
We moved to Florida from North Dakota because initially my trial required me to go every other week for 24 weeks and then I go every 3 months now for booster phase of Anti PD 1. Flying and hotels etc was too expensive after a couple months –I am stage 4 and NED so it's worth it…melanoma is life changing.You do what you need to do…not many people can afford to do what we have to do… We left most of our large belongings behind, sold some, gave most away….My husband had to give up his job…it sucks…but I am workth it!
-
- May 30, 2012 at 1:53 pm
Thank you so much for your input. No, the MONEY is nothing if it saves his life. Robin, I would love to know how to get in touch with the TOWN CAR you are talking about for $60.00 and what hotel you are staying in. We normally stay at the Rotary, but have stayed at Hampton Inn a few blocks away, with good shuttle, free breakfast, and next door to Lubys.
We CANNOT MOVE – YET !!! Wayne is trying his best to get to FULL RETIREMENT at 66 – 3 years away with a company he has been with for almost 20 years. We get good deals on S/West if we can make them far enough in advance. Praying that will hold true.
The longest we have stayed is 3 nights at this point. Since Wayne did not have brain mets, they started him on ZEL and he was cared for by a local oncologist while in Hospital here right after he got started due to fevers, that have passed. THANK THE LORD.
WE JUST SOLD OUT RV in OCTOBER after being an RV'er for over 15 years. GO FIGURE. Fortunately we have AFLAC and they do pay toward hotel stays and are very generous with travel funds. We feel very blessed to have AFLAC. Wayne has his phone set to DUCKS QUACKING to take meds. It's like the Ducks are saying: AFLAC, AFLAC………LOLOLOL
Thanks for all input.
Nancy (devoted wife of 3x warrior Wayne)
-
- May 30, 2012 at 1:53 pm
Thank you so much for your input. No, the MONEY is nothing if it saves his life. Robin, I would love to know how to get in touch with the TOWN CAR you are talking about for $60.00 and what hotel you are staying in. We normally stay at the Rotary, but have stayed at Hampton Inn a few blocks away, with good shuttle, free breakfast, and next door to Lubys.
We CANNOT MOVE – YET !!! Wayne is trying his best to get to FULL RETIREMENT at 66 – 3 years away with a company he has been with for almost 20 years. We get good deals on S/West if we can make them far enough in advance. Praying that will hold true.
The longest we have stayed is 3 nights at this point. Since Wayne did not have brain mets, they started him on ZEL and he was cared for by a local oncologist while in Hospital here right after he got started due to fevers, that have passed. THANK THE LORD.
WE JUST SOLD OUT RV in OCTOBER after being an RV'er for over 15 years. GO FIGURE. Fortunately we have AFLAC and they do pay toward hotel stays and are very generous with travel funds. We feel very blessed to have AFLAC. Wayne has his phone set to DUCKS QUACKING to take meds. It's like the Ducks are saying: AFLAC, AFLAC………LOLOLOL
Thanks for all input.
Nancy (devoted wife of 3x warrior Wayne)
-
- May 30, 2012 at 1:55 pm
Robyn, forgot to say: CONGRATULATIONS for being RENAMED "NED" !!!!!!!!! That is such a wonderful new
name is it not ! I pray I can call My Wayne 'NED' in the very near future.
-
- May 30, 2012 at 1:55 pm
Robyn, forgot to say: CONGRATULATIONS for being RENAMED "NED" !!!!!!!!! That is such a wonderful new
name is it not ! I pray I can call My Wayne 'NED' in the very near future.
-
- May 30, 2012 at 1:55 pm
Robyn, forgot to say: CONGRATULATIONS for being RENAMED "NED" !!!!!!!!! That is such a wonderful new
name is it not ! I pray I can call My Wayne 'NED' in the very near future.
-
- May 30, 2012 at 1:53 pm
Thank you so much for your input. No, the MONEY is nothing if it saves his life. Robin, I would love to know how to get in touch with the TOWN CAR you are talking about for $60.00 and what hotel you are staying in. We normally stay at the Rotary, but have stayed at Hampton Inn a few blocks away, with good shuttle, free breakfast, and next door to Lubys.
We CANNOT MOVE – YET !!! Wayne is trying his best to get to FULL RETIREMENT at 66 – 3 years away with a company he has been with for almost 20 years. We get good deals on S/West if we can make them far enough in advance. Praying that will hold true.
The longest we have stayed is 3 nights at this point. Since Wayne did not have brain mets, they started him on ZEL and he was cared for by a local oncologist while in Hospital here right after he got started due to fevers, that have passed. THANK THE LORD.
WE JUST SOLD OUT RV in OCTOBER after being an RV'er for over 15 years. GO FIGURE. Fortunately we have AFLAC and they do pay toward hotel stays and are very generous with travel funds. We feel very blessed to have AFLAC. Wayne has his phone set to DUCKS QUACKING to take meds. It's like the Ducks are saying: AFLAC, AFLAC………LOLOLOL
Thanks for all input.
Nancy (devoted wife of 3x warrior Wayne)
-
- May 30, 2012 at 10:02 am
I have talked to folks that go to MDA and they have taken RV's and stay in a park. The way they talk many many people do that…some even take apartments and then go home once in awhile.
We moved to Florida from North Dakota because initially my trial required me to go every other week for 24 weeks and then I go every 3 months now for booster phase of Anti PD 1. Flying and hotels etc was too expensive after a couple months –I am stage 4 and NED so it's worth it…melanoma is life changing.You do what you need to do…not many people can afford to do what we have to do… We left most of our large belongings behind, sold some, gave most away….My husband had to give up his job…it sucks…but I am workth it!
-
-
- May 30, 2012 at 7:37 pm
This seems like a good list of potential travel resource help:
-
- May 30, 2012 at 7:37 pm
This seems like a good list of potential travel resource help:
-
- May 30, 2012 at 7:37 pm
This seems like a good list of potential travel resource help:
-
-
- May 31, 2012 at 3:42 am
I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term! Robyn
-
- May 31, 2012 at 3:42 am
I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term! Robyn
-
- May 31, 2012 at 3:42 am
I also stay at rotary house. Just convient and I usually go alone unless having surgey. I will post the number for town car. His name is Norris and he has been wonerful. I have used his car service for so long. He says he is my Houston brother! Aflaac is a great resourse. I was denied the ccancer program due to having had in situ just prior to trying to sin up! They are generous with their travel and treatment benefits! Hope for great things for your Wayne as well. Never thought I would hear those words. Enjoying it while it lasts and hoping for long term! Robyn
-
- You must be logged in to reply to this topic.