@bill58
Forum Replies Created
- Replies
-
-
- November 5, 2010 at 2:26 pm
I was Stage IIIC earlier this year and could not get into any of the trials my doctor had unless I had active disease.
You sholuld make sure you are tested for all of the variousthings like Braf, HLA-A2, CKIT/MKE(dont know much about that one) so you are ready if things progress. I guess if you dont have any current disease, the clinical trials cannot show progression or reduction in your disease.
As hard as it is, sometimes waiting and watching while NED can be a good thing. Try to keep positive and enjoy life each and every day.
Bill
-
- November 5, 2010 at 2:26 pm
I was Stage IIIC earlier this year and could not get into any of the trials my doctor had unless I had active disease.
You sholuld make sure you are tested for all of the variousthings like Braf, HLA-A2, CKIT/MKE(dont know much about that one) so you are ready if things progress. I guess if you dont have any current disease, the clinical trials cannot show progression or reduction in your disease.
As hard as it is, sometimes waiting and watching while NED can be a good thing. Try to keep positive and enjoy life each and every day.
Bill
-
- November 5, 2010 at 2:21 pm
Donna,
I am so sorry to hear about the new developments. I sure hope the Ipi compassionate use works for you. I can sympathize with the whole work issue. I am also under stress from work, but dont have the option to work part time and want to save my short term disability until I really need it. This Mel is a savage beast that we have to keep fighting.
I am trying to get on Compassionate use Ipi as well, once they get the brain mets under control.
Bill
-
- November 5, 2010 at 2:21 pm
Donna,
I am so sorry to hear about the new developments. I sure hope the Ipi compassionate use works for you. I can sympathize with the whole work issue. I am also under stress from work, but dont have the option to work part time and want to save my short term disability until I really need it. This Mel is a savage beast that we have to keep fighting.
I am trying to get on Compassionate use Ipi as well, once they get the brain mets under control.
Bill
-
- November 1, 2010 at 12:58 am
Great news.
I am so glad that Gary is responding so well to the BRAF treatment. I hope things continue to improve and those nasty tumors disappear and never return.
Enjoy your great news and I hope you have many similar scans for years to come.
Bill
-
- November 1, 2010 at 12:58 am
Great news.
I am so glad that Gary is responding so well to the BRAF treatment. I hope things continue to improve and those nasty tumors disappear and never return.
Enjoy your great news and I hope you have many similar scans for years to come.
Bill
-
- November 1, 2010 at 12:52 am
Contrats on the encouraging news.
We all want to hear about stories like yours.
I hear that the rash is a good sing that your body is responding to Ipi.
Don't feel regret for those who have not been responding lately. We need stories like yours to help us make it through our temporary setbacks until we can get a few encouraging words of good news that things are shrinking and looking better.
Enjoy the day. It is your special day. May you continue to have many, many, many more.
Bill
-
- November 1, 2010 at 12:52 am
Contrats on the encouraging news.
We all want to hear about stories like yours.
I hear that the rash is a good sing that your body is responding to Ipi.
Don't feel regret for those who have not been responding lately. We need stories like yours to help us make it through our temporary setbacks until we can get a few encouraging words of good news that things are shrinking and looking better.
Enjoy the day. It is your special day. May you continue to have many, many, many more.
Bill
-
- October 30, 2010 at 3:46 am
Thanks for the info. I applogize for any misspellings or wrong words since my vision is still not 100% , but getting better.
I posted a long description of my experience yesterday with the brain MRI and my meeting with the neurosurgeon and radiologst today on Jill N erics posting about brain mets.
Bottom line.
They found 18 mets in my brain and will go the agressive route of using cyber knife. Because of the time they expect to treat the brain, they have to split it into 2 sessions, 1 for each side of the brain.
I am scheduled for the first treatment on Thursday 11/4. They will do an MRI, the doctors will meet to plan the angles and stuff for the treatment and expect to take 200 minutes or more in the cyberknife machene, possibly 20 minutes per met, depending on the size. That is for 1/2 of the brain.
if the other side only has 8 mets, the next session could be 20-30 minutes shorter.
Should be an interesting 2 days of tretment, starting at 5:30 am and ending at noon or 1pm. I am such a special case the they will only hae one patient that day instead of the 3 patients that they normally treat in 1 day.
I don't always like being the special case that they need to discuss with their collegues across the country, but if it can help guarantee better treatment, I will take it.
The recovery is supposed to be easy and I can return to work the next day.
Next stop IPI probably, as well as meeting with other top melanoma specialists in chicogo to get second opioons now that my plan A of BRAF has fallen by the wayside. They cant keep the spot open for the 3 months it would take to treat the brain mets and perform another scan to show regression or definite lack of progression.
Bill
-
- October 31, 2010 at 2:58 pm
Good advice Lori,
There will be bad news (God, dont I know it). I get scared, angry, cry, despair and then try to move on with planning the next phase of treatment, whatever that might be. Some will have positive outcomes, some might no turn out so well and we have to move on to something else. Dont be afraid to show your emotions during this difficult time. We can't keep everything bottled up inside and need to talk about it with our loved ones to make sure we are making good decisions for the future.
This board is a help with all of the wonderful people who have already walked in our shoes and have experienced the same frustrations with treatments that we have or are about to have.
I have been talking to my pastors at church and that has been of some help. I know there are various books out there to help cope with the rough ride, but I have not checked into any of them yet, although as my situation deteriorates I am going to need more strength than I currently have.
Happy Halloween to everyone. Time to think about something else for a few hours and enjoy those around us.
Bill
-
- October 31, 2010 at 2:58 pm
Good advice Lori,
There will be bad news (God, dont I know it). I get scared, angry, cry, despair and then try to move on with planning the next phase of treatment, whatever that might be. Some will have positive outcomes, some might no turn out so well and we have to move on to something else. Dont be afraid to show your emotions during this difficult time. We can't keep everything bottled up inside and need to talk about it with our loved ones to make sure we are making good decisions for the future.
This board is a help with all of the wonderful people who have already walked in our shoes and have experienced the same frustrations with treatments that we have or are about to have.
I have been talking to my pastors at church and that has been of some help. I know there are various books out there to help cope with the rough ride, but I have not checked into any of them yet, although as my situation deteriorates I am going to need more strength than I currently have.
Happy Halloween to everyone. Time to think about something else for a few hours and enjoy those around us.
Bill
-
- October 30, 2010 at 6:42 pm
Jill N Eric,
Good luck. This is such a sucky disease with the symptoms changing over time as the mets move around the body.
Let me know how the BRAF trial goes on November 9th. I was scheduled to start BRAF on Nov 1, but the brain mets is an exclusion until they have been treated for something like 3 months. I was the last one to get in through my oncologist and they cannot hold the spot open for that long and I don't want to wait 3 months to get my other mets treated.
I dont know if you were scheduled for the same trial that I was or if you will have the same outcome. Good luck.
Bill
-
- October 30, 2010 at 6:42 pm
Jill N Eric,
Good luck. This is such a sucky disease with the symptoms changing over time as the mets move around the body.
Let me know how the BRAF trial goes on November 9th. I was scheduled to start BRAF on Nov 1, but the brain mets is an exclusion until they have been treated for something like 3 months. I was the last one to get in through my oncologist and they cannot hold the spot open for that long and I don't want to wait 3 months to get my other mets treated.
I dont know if you were scheduled for the same trial that I was or if you will have the same outcome. Good luck.
Bill
-
