› Forums › General Melanoma Community › Everything went wrong
- This topic has 24 replies, 8 voices, and was last updated 11 years, 9 months ago by
Snickers60.
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- July 7, 2012 at 2:14 am
Hey everyone. I try to stop in as much as I can but have been dealing with my own battle. Last I posted I had a great post 1yr IL2 PetCT showing all tumor activity in the liver and lymph nodes gone….amazing. Only one small area in the L5 S1 spine was lighting up and we took the watch and wait approach for 8wk scans to see if the immune system would continue to kick in. HUGE MISTAKE. Didn't make it but to 6wk scans which showed growth. With 5 days I saw my Onc., Neurosurgeon, and 2 different Radiantion Onc.'s. My spine is close to collapsin
Hey everyone. I try to stop in as much as I can but have been dealing with my own battle. Last I posted I had a great post 1yr IL2 PetCT showing all tumor activity in the liver and lymph nodes gone….amazing. Only one small area in the L5 S1 spine was lighting up and we took the watch and wait approach for 8wk scans to see if the immune system would continue to kick in. HUGE MISTAKE. Didn't make it but to 6wk scans which showed growth. With 5 days I saw my Onc., Neurosurgeon, and 2 different Radiantion Onc.'s. My spine is close to collapsing. The pain became so extremely severe no amount of meds could touch it. Surgery too risky at the time as well as Cyperknife too risky for fear of permanent paralysis. All that was left was regular radiation to help with the pain which I completed my 10th treatment today. The pain levels are FAR tolerable now. I am scared. I do not know what is next. I have an appt. Monday. We need to scan to see if the disease has indeed gone crazy elsewhere. It appears there is a small pea size sub q on my arm hanging out the last month(only outward sign I can find) but it hasn't been tested or anything yet. Maybe IPI? Probably not ANTI PD since you can't get in anywhere….I just don' know. Possibly/probably surgery? I dunno. I feel defeated. Beat to crap. I stay strong I stay positive but this sucker punch is getting the best of me today anyway. Would love to do the Cabozantinib trial….all closed no chance.
Jimmy B….I listen to every word/advice you give out. Any ideas this time? I really only see IPI as a choice and it makes me uber nervous since I had quite a few auto immune problems post IL2.
We haven't even check the brain so who knows what might be going on there. We really only get a day at a time with this disease.
Anything you want to give me feedback, good bad or ugly, I will take it.
Karin
- Replies
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- July 7, 2012 at 12:35 pm
Karin,
so sorry to hear what you are going through. praying for you.
I'm not sure Ipi will be allowed due to your reactions with IL2. Not sure you want it due to the reactions we have experienced.
keep on, keeping on….
love and hugs.
b arb
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- July 7, 2012 at 12:35 pm
Karin,
so sorry to hear what you are going through. praying for you.
I'm not sure Ipi will be allowed due to your reactions with IL2. Not sure you want it due to the reactions we have experienced.
keep on, keeping on….
love and hugs.
b arb
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- July 7, 2012 at 12:35 pm
Karin,
so sorry to hear what you are going through. praying for you.
I'm not sure Ipi will be allowed due to your reactions with IL2. Not sure you want it due to the reactions we have experienced.
keep on, keeping on….
love and hugs.
b arb
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- July 7, 2012 at 3:40 pm
Karin,
Sorry to hear about your relapse. You may want to get your oncologist to request compassionate use of Cabozantinib (XL184) . It demonstrated high rates of disease control in patients with bone metastases. I also would request a consult at MD Anderson, to see if there are any other therapies that would help your situation.I wish I could be more help to you.
Jimmy b.
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- July 7, 2012 at 3:40 pm
Karin,
Sorry to hear about your relapse. You may want to get your oncologist to request compassionate use of Cabozantinib (XL184) . It demonstrated high rates of disease control in patients with bone metastases. I also would request a consult at MD Anderson, to see if there are any other therapies that would help your situation.I wish I could be more help to you.
Jimmy b.
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- July 7, 2012 at 3:40 pm
Karin,
Sorry to hear about your relapse. You may want to get your oncologist to request compassionate use of Cabozantinib (XL184) . It demonstrated high rates of disease control in patients with bone metastases. I also would request a consult at MD Anderson, to see if there are any other therapies that would help your situation.I wish I could be more help to you.
Jimmy b.
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- July 7, 2012 at 4:13 pm
Karin,
My suggestion is to see if you qualify for ippi, especially if you can get the gm-csf shot with it.
Ippi is very different than IL2.
Other than that I would do a search on "Ralph Moss and melanoma" for treatments around the world.
I would also suggest a vitamin D-3 test, My guess is that you are very deficient.
The next time you have a blood test ask your oncologist to have your vitamin D-3 checked.
Check out http://www.lef.org if you want to purchase any blood tests using your own money. There is a six month free
membership also available to join them.
Best wishes to you. Gene
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- July 7, 2012 at 4:13 pm
Karin,
My suggestion is to see if you qualify for ippi, especially if you can get the gm-csf shot with it.
Ippi is very different than IL2.
Other than that I would do a search on "Ralph Moss and melanoma" for treatments around the world.
I would also suggest a vitamin D-3 test, My guess is that you are very deficient.
The next time you have a blood test ask your oncologist to have your vitamin D-3 checked.
Check out http://www.lef.org if you want to purchase any blood tests using your own money. There is a six month free
membership also available to join them.
Best wishes to you. Gene
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- July 7, 2012 at 4:13 pm
Karin,
My suggestion is to see if you qualify for ippi, especially if you can get the gm-csf shot with it.
Ippi is very different than IL2.
Other than that I would do a search on "Ralph Moss and melanoma" for treatments around the world.
I would also suggest a vitamin D-3 test, My guess is that you are very deficient.
The next time you have a blood test ask your oncologist to have your vitamin D-3 checked.
Check out http://www.lef.org if you want to purchase any blood tests using your own money. There is a six month free
membership also available to join them.
Best wishes to you. Gene
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- July 7, 2012 at 10:15 pm
Karin,
What about Zelboraf? Are you BRAF +? It works fast! Side effects are rough, but it works…
You were so kind and helpful when Jeff was going through his IL2 treatment, I will be praying for you. God Bless and keep us updated on what those good doctors at Lutheran General have to say.
Bridgette (Jeff's Mom)
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- July 7, 2012 at 10:15 pm
Karin,
What about Zelboraf? Are you BRAF +? It works fast! Side effects are rough, but it works…
You were so kind and helpful when Jeff was going through his IL2 treatment, I will be praying for you. God Bless and keep us updated on what those good doctors at Lutheran General have to say.
Bridgette (Jeff's Mom)
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- July 7, 2012 at 10:15 pm
Karin,
What about Zelboraf? Are you BRAF +? It works fast! Side effects are rough, but it works…
You were so kind and helpful when Jeff was going through his IL2 treatment, I will be praying for you. God Bless and keep us updated on what those good doctors at Lutheran General have to say.
Bridgette (Jeff's Mom)
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- July 7, 2012 at 11:57 pm
It is absolutely wonderful to have someplace to come to have a hand to hold onto, even if it is a cyber hand! Thank you for your replies and support.
Oh Jimmy, how I wish. The corp. will NOT allow compassionate use. What kind of crap is that. So, those doors are knocked down.
I do not know my mutations. There has been no opportunity since we began the journey to check yet.
Does IPI even have a chance at this point? I guess until we know what the disease is actually doing elsewhere, there is no answer?
I fight to get the lymph system, the liver, the other bone mets CLEAR, GONE, and this one area goes insane? I don't get it.. 'Splain it to me Lucy ; ). We search and destroyed 99 of 100 mice. But…I am proud of that.
Karin
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- July 7, 2012 at 11:57 pm
It is absolutely wonderful to have someplace to come to have a hand to hold onto, even if it is a cyber hand! Thank you for your replies and support.
Oh Jimmy, how I wish. The corp. will NOT allow compassionate use. What kind of crap is that. So, those doors are knocked down.
I do not know my mutations. There has been no opportunity since we began the journey to check yet.
Does IPI even have a chance at this point? I guess until we know what the disease is actually doing elsewhere, there is no answer?
I fight to get the lymph system, the liver, the other bone mets CLEAR, GONE, and this one area goes insane? I don't get it.. 'Splain it to me Lucy ; ). We search and destroyed 99 of 100 mice. But…I am proud of that.
Karin
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- July 7, 2012 at 11:57 pm
It is absolutely wonderful to have someplace to come to have a hand to hold onto, even if it is a cyber hand! Thank you for your replies and support.
Oh Jimmy, how I wish. The corp. will NOT allow compassionate use. What kind of crap is that. So, those doors are knocked down.
I do not know my mutations. There has been no opportunity since we began the journey to check yet.
Does IPI even have a chance at this point? I guess until we know what the disease is actually doing elsewhere, there is no answer?
I fight to get the lymph system, the liver, the other bone mets CLEAR, GONE, and this one area goes insane? I don't get it.. 'Splain it to me Lucy ; ). We search and destroyed 99 of 100 mice. But…I am proud of that.
Karin
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- July 8, 2012 at 5:09 am
Karin, have you contacted Moffitt regarding Anti PD 1? I go there and NED for over 2 years…here is that trial link…you can e-mail my oncologist ,Dr Weber directly at [email protected] he will reply. http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
Yale and Sloan Kettering have one using Anti PD 1 and Ipi combi here is their link…call them…it won't hurt…you do not need your dr to call…http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
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- July 8, 2012 at 5:09 am
Karin, have you contacted Moffitt regarding Anti PD 1? I go there and NED for over 2 years…here is that trial link…you can e-mail my oncologist ,Dr Weber directly at [email protected] he will reply. http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
Yale and Sloan Kettering have one using Anti PD 1 and Ipi combi here is their link…call them…it won't hurt…you do not need your dr to call…http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
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- July 9, 2012 at 2:53 am
Karin, I’m so sorry you’re going through this. You should ask your onc if they’ve tested for BRAF mutation. Sometimes they do it as a matter of course and just stick the results in your file–that happened to me. (negative of course)
I had partial response to IL2 but it didn’t last– same with ipi, but you might do well w/ipi. And I so agree with you –can’t get into a pd1 trial for love or money. So damn frustrating. Please let us know what’s happening.
hugs,
Karen -
- July 9, 2012 at 2:53 am
Karin, I’m so sorry you’re going through this. You should ask your onc if they’ve tested for BRAF mutation. Sometimes they do it as a matter of course and just stick the results in your file–that happened to me. (negative of course)
I had partial response to IL2 but it didn’t last– same with ipi, but you might do well w/ipi. And I so agree with you –can’t get into a pd1 trial for love or money. So damn frustrating. Please let us know what’s happening.
hugs,
Karen -
- July 13, 2012 at 4:12 pm
Can't believe they didn't test you for Braf right off the bat. Karin, you've been through soooo much, hang on, and let's pray for God to make a way where there seems to be no way. Call American Cancer Foundation and see whatthey have to allow and if you can – GET TO MDANDERSON….I know I'm prejudice, but it's a great MELLY MEDICAL CENTER – number one they say !
Here's praying the Lord will lead and guide you to the right facility, Doc and treatment.
You scare me……..:-) You health results that is. :-((
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- July 13, 2012 at 4:12 pm
Can't believe they didn't test you for Braf right off the bat. Karin, you've been through soooo much, hang on, and let's pray for God to make a way where there seems to be no way. Call American Cancer Foundation and see whatthey have to allow and if you can – GET TO MDANDERSON….I know I'm prejudice, but it's a great MELLY MEDICAL CENTER – number one they say !
Here's praying the Lord will lead and guide you to the right facility, Doc and treatment.
You scare me……..:-) You health results that is. :-((
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- July 13, 2012 at 4:12 pm
Can't believe they didn't test you for Braf right off the bat. Karin, you've been through soooo much, hang on, and let's pray for God to make a way where there seems to be no way. Call American Cancer Foundation and see whatthey have to allow and if you can – GET TO MDANDERSON….I know I'm prejudice, but it's a great MELLY MEDICAL CENTER – number one they say !
Here's praying the Lord will lead and guide you to the right facility, Doc and treatment.
You scare me……..:-) You health results that is. :-((
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- July 9, 2012 at 2:53 am
Karin, I’m so sorry you’re going through this. You should ask your onc if they’ve tested for BRAF mutation. Sometimes they do it as a matter of course and just stick the results in your file–that happened to me. (negative of course)
I had partial response to IL2 but it didn’t last– same with ipi, but you might do well w/ipi. And I so agree with you –can’t get into a pd1 trial for love or money. So damn frustrating. Please let us know what’s happening.
hugs,
Karen -
- July 8, 2012 at 5:09 am
Karin, have you contacted Moffitt regarding Anti PD 1? I go there and NED for over 2 years…here is that trial link…you can e-mail my oncologist ,Dr Weber directly at [email protected] he will reply. http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
Yale and Sloan Kettering have one using Anti PD 1 and Ipi combi here is their link…call them…it won't hurt…you do not need your dr to call…http://www.cancer.gov/clinicaltrials/search/view?cdrid=661267&version=HealthProfessional&protocolsearchid=10628932
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