› Forums › General Melanoma Community › no trial for Julie
- This topic has 18 replies, 6 voices, and was last updated 9 years, 6 months ago by
cancersnewnormal.
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- September 29, 2016 at 1:32 am
Greetings Friends,
im not sure why, but this post has been rejected 2 times now. Maybe the third time's a charm.
It's been a wild roller coaster of a ride the last few weeks. I thought that the treatment ride was leveling out (though probably not coming to a full and complete stop). I thought I was joining a clinical trial. Alas it's not to be. So here kicking Mel as I know it-I will not be joining either of the trials I had hoped and thought I qualified fo. My liver numbers are too high and so I don't qualify. So the plan is to get to get my liver back in shape where it should be and then move on with Mel.My Rock Star Doc and I also talked about having the lung tumor resected and being done with it for now. But again, there's no hurry on the lung critter and I still have options, just not clinical trial options at this time.So that's all the news. Of course, like a good coaster with hidden ups and downs, the plan is liable to change -seemingly at any moment (usually after I just catch my breath). I'll be keeping my hands and arms inside the car at all times, but full and complete stop is a long ways off.Here's to the process! Thanks for riding with me,shalom,Julie
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- September 29, 2016 at 1:54 am
Can you have gamma knife for liver mets. Seems like that might be an option. – You'd need a good radiation oncologist. – Dr. Erick Chang was my Mom's.
Another local guy missed one of my Mom's brain tumors. Not a lot of experience I guess. – Be careful with who you go with, if this is possible.
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- September 29, 2016 at 8:34 pm
You're right Patina, Dr Eric Chang at USC is an amazing radiation oncologist. Absolutely brilliant man, and incredibly good with patient care/contact. I call him "MY" brain genius. If not for him, I'd be long dead. #truth
Julie, Dr. O'Day has a fabulous reputation. I know another of his patients, and he also considers him a "Rock Star". 😉
If you do consider lung surgery, Dr. Jeffrey Hagen is so talented, that other surgeons say they would use him if they ever found themselves in need for thoracic surgery!
By the time I had Pembro as an option, most of my tumor load was removed and/or gamma treated. I'm in the lucky pile of people that completely responded to the drug. So completely… too completely… and now we're managing the mounting (and very late blooming) side effects.
With your rock star medical oncologist, you've got the best possible scenario for making it back up those downhills on the coaster ride!
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- September 29, 2016 at 8:34 pm
You're right Patina, Dr Eric Chang at USC is an amazing radiation oncologist. Absolutely brilliant man, and incredibly good with patient care/contact. I call him "MY" brain genius. If not for him, I'd be long dead. #truth
Julie, Dr. O'Day has a fabulous reputation. I know another of his patients, and he also considers him a "Rock Star". 😉
If you do consider lung surgery, Dr. Jeffrey Hagen is so talented, that other surgeons say they would use him if they ever found themselves in need for thoracic surgery!
By the time I had Pembro as an option, most of my tumor load was removed and/or gamma treated. I'm in the lucky pile of people that completely responded to the drug. So completely… too completely… and now we're managing the mounting (and very late blooming) side effects.
With your rock star medical oncologist, you've got the best possible scenario for making it back up those downhills on the coaster ride!
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- September 29, 2016 at 8:34 pm
You're right Patina, Dr Eric Chang at USC is an amazing radiation oncologist. Absolutely brilliant man, and incredibly good with patient care/contact. I call him "MY" brain genius. If not for him, I'd be long dead. #truth
Julie, Dr. O'Day has a fabulous reputation. I know another of his patients, and he also considers him a "Rock Star". 😉
If you do consider lung surgery, Dr. Jeffrey Hagen is so talented, that other surgeons say they would use him if they ever found themselves in need for thoracic surgery!
By the time I had Pembro as an option, most of my tumor load was removed and/or gamma treated. I'm in the lucky pile of people that completely responded to the drug. So completely… too completely… and now we're managing the mounting (and very late blooming) side effects.
With your rock star medical oncologist, you've got the best possible scenario for making it back up those downhills on the coaster ride!
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- September 29, 2016 at 1:54 am
Can you have gamma knife for liver mets. Seems like that might be an option. – You'd need a good radiation oncologist. – Dr. Erick Chang was my Mom's.
Another local guy missed one of my Mom's brain tumors. Not a lot of experience I guess. – Be careful with who you go with, if this is possible.
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- September 29, 2016 at 1:54 am
Can you have gamma knife for liver mets. Seems like that might be an option. – You'd need a good radiation oncologist. – Dr. Erick Chang was my Mom's.
Another local guy missed one of my Mom's brain tumors. Not a lot of experience I guess. – Be careful with who you go with, if this is possible.
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- September 29, 2016 at 2:03 am
Aww Julie,
Not news I was hoping for from you when you even had note than on plan lined up.
You are so right about melanoma being a roller coaster ride.
My trials treatment for resected stags 3 pembro was officially ended this week.. due to a combo of too long on treatment holiday caused by other medical problems possibly trials related. Came to an outpatients appointment and 3 weeks later still in hospital on IV antibiotics and another surgery on the list for my lymphoedema leg. So have been prowling round the forum and learning / reading more about treatments in between the iv infusions.
You have a brilliant approach to all of this and as pembro gets washed out of your system maybe the liver enzyme stuff will sort itself out. Keeping the resectable lung met might even help you qualify for the next set of trials which seem to be coming tghrough think and fast fee combination treatments and ideal timing of dual agent approaches.
Thank you for posting about this. At times I feel quite raw with tgbe emotional impact of melanoma but seeing other people dealing with problems makes me feel less isolated and our ability as a group to cope with adversity is at times humbling.
Thinking of you and sending you an internet hug which is fallback option when words fail me.
Shallom and good luck,
Deb
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- September 29, 2016 at 2:03 am
Aww Julie,
Not news I was hoping for from you when you even had note than on plan lined up.
You are so right about melanoma being a roller coaster ride.
My trials treatment for resected stags 3 pembro was officially ended this week.. due to a combo of too long on treatment holiday caused by other medical problems possibly trials related. Came to an outpatients appointment and 3 weeks later still in hospital on IV antibiotics and another surgery on the list for my lymphoedema leg. So have been prowling round the forum and learning / reading more about treatments in between the iv infusions.
You have a brilliant approach to all of this and as pembro gets washed out of your system maybe the liver enzyme stuff will sort itself out. Keeping the resectable lung met might even help you qualify for the next set of trials which seem to be coming tghrough think and fast fee combination treatments and ideal timing of dual agent approaches.
Thank you for posting about this. At times I feel quite raw with tgbe emotional impact of melanoma but seeing other people dealing with problems makes me feel less isolated and our ability as a group to cope with adversity is at times humbling.
Thinking of you and sending you an internet hug which is fallback option when words fail me.
Shallom and good luck,
Deb
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- September 29, 2016 at 2:03 am
Aww Julie,
Not news I was hoping for from you when you even had note than on plan lined up.
You are so right about melanoma being a roller coaster ride.
My trials treatment for resected stags 3 pembro was officially ended this week.. due to a combo of too long on treatment holiday caused by other medical problems possibly trials related. Came to an outpatients appointment and 3 weeks later still in hospital on IV antibiotics and another surgery on the list for my lymphoedema leg. So have been prowling round the forum and learning / reading more about treatments in between the iv infusions.
You have a brilliant approach to all of this and as pembro gets washed out of your system maybe the liver enzyme stuff will sort itself out. Keeping the resectable lung met might even help you qualify for the next set of trials which seem to be coming tghrough think and fast fee combination treatments and ideal timing of dual agent approaches.
Thank you for posting about this. At times I feel quite raw with tgbe emotional impact of melanoma but seeing other people dealing with problems makes me feel less isolated and our ability as a group to cope with adversity is at times humbling.
Thinking of you and sending you an internet hug which is fallback option when words fail me.
Shallom and good luck,
Deb
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- September 29, 2016 at 3:00 am
Dang, sounds like the Riddlers Revenge now! Talked to Rock Star today and said i missed you by a few hours. We are debating weather to discontinue treatment now or wait till Jan. Prolly just get a Fast Pass and ride it out till then. Good luck Julie and may there be many Lazy Rivers ahead…
Best, Paul
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- September 29, 2016 at 3:00 am
Dang, sounds like the Riddlers Revenge now! Talked to Rock Star today and said i missed you by a few hours. We are debating weather to discontinue treatment now or wait till Jan. Prolly just get a Fast Pass and ride it out till then. Good luck Julie and may there be many Lazy Rivers ahead…
Best, Paul
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- September 29, 2016 at 3:00 am
Dang, sounds like the Riddlers Revenge now! Talked to Rock Star today and said i missed you by a few hours. We are debating weather to discontinue treatment now or wait till Jan. Prolly just get a Fast Pass and ride it out till then. Good luck Julie and may there be many Lazy Rivers ahead…
Best, Paul
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- September 29, 2016 at 7:43 am
Well, good grief! Sorry, Julie! I hate that for you…not that there aren't other things you can do…but the infernal melanoma merry-go-round is anything but merry! Hang in there. I know you will persevere in your lovely way. Keep us posted on what you do decide to do. Yours, celeste
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- September 29, 2016 at 7:43 am
Well, good grief! Sorry, Julie! I hate that for you…not that there aren't other things you can do…but the infernal melanoma merry-go-round is anything but merry! Hang in there. I know you will persevere in your lovely way. Keep us posted on what you do decide to do. Yours, celeste
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- September 29, 2016 at 7:43 am
Well, good grief! Sorry, Julie! I hate that for you…not that there aren't other things you can do…but the infernal melanoma merry-go-round is anything but merry! Hang in there. I know you will persevere in your lovely way. Keep us posted on what you do decide to do. Yours, celeste
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- September 29, 2016 at 12:29 pm
Hi Julie-
I know the feeling of being so ready to start a clinical trial then finding out nope!- ineligible. I'm sorry your'e going through this.
Melanoma is such an enigma! To compare, my sister had breast cancer with positive axillary lymph nodes, had a lumpectomy and axillary node dissection, then bam! Chemo and radiation- bye bye cancer. I have melanoma with positive cervical lymph nodes, WLE, neck dissection, possible lung mets now yet I'm waiting and waiting for treatment. Waiting, wondering and praying.
Anyway I am with the others who are wishing well for you. I'm thankful that we have this forum to meet and get support and understanding from other people who are where we are at. Please keep us updated!
All the best-
Peggy
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- September 29, 2016 at 12:29 pm
Hi Julie-
I know the feeling of being so ready to start a clinical trial then finding out nope!- ineligible. I'm sorry your'e going through this.
Melanoma is such an enigma! To compare, my sister had breast cancer with positive axillary lymph nodes, had a lumpectomy and axillary node dissection, then bam! Chemo and radiation- bye bye cancer. I have melanoma with positive cervical lymph nodes, WLE, neck dissection, possible lung mets now yet I'm waiting and waiting for treatment. Waiting, wondering and praying.
Anyway I am with the others who are wishing well for you. I'm thankful that we have this forum to meet and get support and understanding from other people who are where we are at. Please keep us updated!
All the best-
Peggy
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- September 29, 2016 at 12:29 pm
Hi Julie-
I know the feeling of being so ready to start a clinical trial then finding out nope!- ineligible. I'm sorry your'e going through this.
Melanoma is such an enigma! To compare, my sister had breast cancer with positive axillary lymph nodes, had a lumpectomy and axillary node dissection, then bam! Chemo and radiation- bye bye cancer. I have melanoma with positive cervical lymph nodes, WLE, neck dissection, possible lung mets now yet I'm waiting and waiting for treatment. Waiting, wondering and praying.
Anyway I am with the others who are wishing well for you. I'm thankful that we have this forum to meet and get support and understanding from other people who are where we are at. Please keep us updated!
All the best-
Peggy
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