› Forums › General Melanoma Community › Please–Need Support Today.
- This topic has 57 replies, 13 voices, and was last updated 13 years, 7 months ago by
NYKaren.
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- June 11, 2012 at 4:09 pm
Hi everyone.
So, as previously posted, had to stop Yervoy after 3 infusions due to pretty serious colitis. Last infusion was 4/29; still dealing w/colitis. Have already done radiation and IL-2. After initial positive signs, was not a responder to either.
After weaning off steroids 3 weeks ago, still experiencing extreme weakness, no appetite–loss of 20 lbs, even on Prednisone, and still diarrhea with daily use of either Lomotil or Immodium and still on Endocort EC.
Hi everyone.
So, as previously posted, had to stop Yervoy after 3 infusions due to pretty serious colitis. Last infusion was 4/29; still dealing w/colitis. Have already done radiation and IL-2. After initial positive signs, was not a responder to either.
After weaning off steroids 3 weeks ago, still experiencing extreme weakness, no appetite–loss of 20 lbs, even on Prednisone, and still diarrhea with daily use of either Lomotil or Immodium and still on Endocort EC.
Endo. says my Adrenal gland never woke up after Pred. wean, so she started me on 15 mg./day of Hydrocort. It is stopping the diarrhea and doesn't seem to have the horrible side-effects the Pred. did.
I don't think the Yervoy did anything…the mets on my face are on the move again, after halting during the Yervoy treatment. The one under my chin that i was "saving" for "measurable disease" eligibility for Anti-Pd1 trial is bigger.
Spoke w/Dr. Wolchok today (seeing him next Thurs. after chest/abdomen CT). He feels that the it would be dangerous for me to be in the Anti PD-1 trial. All those hopes–gone. He thinks that I should have the met under my chin removed. (I'm continuing to have the new mets frozen & applying Aldera. Putting Aldera on my face–I might as well be applying Ponds cold cream–it does absolutely nothing.) I asked him if the big side effect to worry about from PD-1 is pneumonia, what the problem is, he said that A) colitis has been reported, and B) he just won't take the chance. And besides, all the seats at Sloan for the newest BMX trial version (Anti-PD1 after Ippi) are now filled.
So, unless something develops on the CT scan next week, it looks like my next step will be chemo. (Has to be CT, not PET to monitor colitis–there is now some kind of lump that moves when I touch it on my collar-bone–Dr. W. said if it's something, it should show up on CT, and he'll say more about it after he sees me). I know it was stupid to hang my hat one one treatment, but I did. I know I'm only IIIc unresectible (hopefully still.) I'm just worried because the mets are spreading fast again, in my ear and from scalp to below chin. I know I need to look at those around here at people so much worse off than I, put some gratitutide in my attitude and pull up the bootstraps again. I just need a little help with that today.
Please don't let this be one of those days that nobody responds to my post, even if you write to kick my ass, I need you guys.
Thanks,
karen
- Replies
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- June 11, 2012 at 4:24 pm
Hi Karen –
Thoughts and prayers your way! Hopefully they find the answer for you! I'm headed to sloan today for my weekly blood draw (had low hemoglobin most likely from a small intestine met). Had to stop Zelboraf Friday and take the weekend off since I have a rash all over! The things we go thru! Hang in there lady! And hoping Dr W finds the golden ticket treatment for you!!
Erin
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- June 11, 2012 at 4:24 pm
Hi Karen –
Thoughts and prayers your way! Hopefully they find the answer for you! I'm headed to sloan today for my weekly blood draw (had low hemoglobin most likely from a small intestine met). Had to stop Zelboraf Friday and take the weekend off since I have a rash all over! The things we go thru! Hang in there lady! And hoping Dr W finds the golden ticket treatment for you!!
Erin
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- June 11, 2012 at 4:36 pm
Hi Karen
YOU ARE NOT ALONE! We are all here listening and with you in spirit. I know it is very hard to have your hopes on a particular drug or trial and have that pulled out from under you. I know also it is scary to have visible signs that cancer is spreading. From what I have heard and read Dr W is a great knowledgeable doctor, I hope after the scans he has a new game plan for you and you can jump into it and move forward. You are strong!!
Have you posted also on the melanoma international forum? Sometimes they can offer advice that others havent thought of.
My thoughts and prayers are with you. I am sorry I cannot offer any advice as to what to try. I am also searching for an answer for myself. I was going thru the steps to get approved for PD-1 drug in Boston and failed due to MRI showing a brain met. So I have to reverse directions and start with new game plan, radiation etc. . (I also did ippi and was a partial responder ). IT is hard to have something be almost within your reach and then find out it isnt there. BUt we cannot give up we need to continue to search the sites, trials, and hope!
I am hopeful now that the ASCO condference showed good results and lots of buzz over PD-1 that the drug companies will open up more seats for their trials. There are also a lot of other drugs out there that are coming forward. I dont know much about the chemo but have heard read that people get some results.
Take care, keep us posted.
laurie from maine
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- June 11, 2012 at 4:36 pm
Hi Karen
YOU ARE NOT ALONE! We are all here listening and with you in spirit. I know it is very hard to have your hopes on a particular drug or trial and have that pulled out from under you. I know also it is scary to have visible signs that cancer is spreading. From what I have heard and read Dr W is a great knowledgeable doctor, I hope after the scans he has a new game plan for you and you can jump into it and move forward. You are strong!!
Have you posted also on the melanoma international forum? Sometimes they can offer advice that others havent thought of.
My thoughts and prayers are with you. I am sorry I cannot offer any advice as to what to try. I am also searching for an answer for myself. I was going thru the steps to get approved for PD-1 drug in Boston and failed due to MRI showing a brain met. So I have to reverse directions and start with new game plan, radiation etc. . (I also did ippi and was a partial responder ). IT is hard to have something be almost within your reach and then find out it isnt there. BUt we cannot give up we need to continue to search the sites, trials, and hope!
I am hopeful now that the ASCO condference showed good results and lots of buzz over PD-1 that the drug companies will open up more seats for their trials. There are also a lot of other drugs out there that are coming forward. I dont know much about the chemo but have heard read that people get some results.
Take care, keep us posted.
laurie from maine
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- June 11, 2012 at 4:36 pm
Hi Karen
YOU ARE NOT ALONE! We are all here listening and with you in spirit. I know it is very hard to have your hopes on a particular drug or trial and have that pulled out from under you. I know also it is scary to have visible signs that cancer is spreading. From what I have heard and read Dr W is a great knowledgeable doctor, I hope after the scans he has a new game plan for you and you can jump into it and move forward. You are strong!!
Have you posted also on the melanoma international forum? Sometimes they can offer advice that others havent thought of.
My thoughts and prayers are with you. I am sorry I cannot offer any advice as to what to try. I am also searching for an answer for myself. I was going thru the steps to get approved for PD-1 drug in Boston and failed due to MRI showing a brain met. So I have to reverse directions and start with new game plan, radiation etc. . (I also did ippi and was a partial responder ). IT is hard to have something be almost within your reach and then find out it isnt there. BUt we cannot give up we need to continue to search the sites, trials, and hope!
I am hopeful now that the ASCO condference showed good results and lots of buzz over PD-1 that the drug companies will open up more seats for their trials. There are also a lot of other drugs out there that are coming forward. I dont know much about the chemo but have heard read that people get some results.
Take care, keep us posted.
laurie from maine
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- June 11, 2012 at 4:24 pm
Hi Karen –
Thoughts and prayers your way! Hopefully they find the answer for you! I'm headed to sloan today for my weekly blood draw (had low hemoglobin most likely from a small intestine met). Had to stop Zelboraf Friday and take the weekend off since I have a rash all over! The things we go thru! Hang in there lady! And hoping Dr W finds the golden ticket treatment for you!!
Erin
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- June 11, 2012 at 5:01 pm
Hi Karen,
Of course you're having trouble pulling up your bootstraps. You are going through a lot. But, you definitely haven't hit bottom, and your fighting spirit is right there at the surface. Is there someone nearby that you can talk this out with? Sometimes it helps to have someone listen. Sometimes the answers come when you listen to yourself pour your heart out. " Don't stop believing", Karen. There are a lot of us pulling for you.
Hope
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- June 11, 2012 at 5:01 pm
Hi Karen,
Of course you're having trouble pulling up your bootstraps. You are going through a lot. But, you definitely haven't hit bottom, and your fighting spirit is right there at the surface. Is there someone nearby that you can talk this out with? Sometimes it helps to have someone listen. Sometimes the answers come when you listen to yourself pour your heart out. " Don't stop believing", Karen. There are a lot of us pulling for you.
Hope
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- June 11, 2012 at 5:01 pm
Hi Karen,
Of course you're having trouble pulling up your bootstraps. You are going through a lot. But, you definitely haven't hit bottom, and your fighting spirit is right there at the surface. Is there someone nearby that you can talk this out with? Sometimes it helps to have someone listen. Sometimes the answers come when you listen to yourself pour your heart out. " Don't stop believing", Karen. There are a lot of us pulling for you.
Hope
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- June 11, 2012 at 5:48 pm
Karen your a NYer and they don"t make em tougher than yout.For it only makes it more rewarding when you kick this cancers ass.Everyone here will be praying for you I am sure.I know you are always in my prayers. Get the negativity out of your head and go get NED. Al
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- June 11, 2012 at 5:48 pm
Karen your a NYer and they don"t make em tougher than yout.For it only makes it more rewarding when you kick this cancers ass.Everyone here will be praying for you I am sure.I know you are always in my prayers. Get the negativity out of your head and go get NED. Al
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- June 11, 2012 at 5:48 pm
Karen your a NYer and they don"t make em tougher than yout.For it only makes it more rewarding when you kick this cancers ass.Everyone here will be praying for you I am sure.I know you are always in my prayers. Get the negativity out of your head and go get NED. Al
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- June 11, 2012 at 10:19 pm
Karen,
I am so sorry to hear that the current treatments are not working. I really like Dr. Wolchok, but if he doesn't have anything for you, maybe you should see if someone else has something. I just went to Dr, Anna Pavlick at NYU today, and she is absolutely wonderful. Her phone number is 212-731-5431.
My doctor said he had nothing for me after my last recurrance, so I went to her. She has two things to offer me. I'm thinking about my next move, but at least I now have some options.
Hang in there…you're in my prayers!
Tricia
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- June 11, 2012 at 10:19 pm
Karen,
I am so sorry to hear that the current treatments are not working. I really like Dr. Wolchok, but if he doesn't have anything for you, maybe you should see if someone else has something. I just went to Dr, Anna Pavlick at NYU today, and she is absolutely wonderful. Her phone number is 212-731-5431.
My doctor said he had nothing for me after my last recurrance, so I went to her. She has two things to offer me. I'm thinking about my next move, but at least I now have some options.
Hang in there…you're in my prayers!
Tricia
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- June 12, 2012 at 10:24 pm
Anna Pavlick is fabulous. I participated in one of clinical trials back in 2006 and continue to see her. The care she gave me was superb in every way. She is truly the gold standard for me. If there is anything she can do for you, she will move heaven and earth to make it happen. Please feel free to email me if you need more info. Wishing you all the best! -
- June 12, 2012 at 10:24 pm
Anna Pavlick is fabulous. I participated in one of clinical trials back in 2006 and continue to see her. The care she gave me was superb in every way. She is truly the gold standard for me. If there is anything she can do for you, she will move heaven and earth to make it happen. Please feel free to email me if you need more info. Wishing you all the best! -
- June 12, 2012 at 10:24 pm
Anna Pavlick is fabulous. I participated in one of clinical trials back in 2006 and continue to see her. The care she gave me was superb in every way. She is truly the gold standard for me. If there is anything she can do for you, she will move heaven and earth to make it happen. Please feel free to email me if you need more info. Wishing you all the best!
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- June 11, 2012 at 10:19 pm
Karen,
I am so sorry to hear that the current treatments are not working. I really like Dr. Wolchok, but if he doesn't have anything for you, maybe you should see if someone else has something. I just went to Dr, Anna Pavlick at NYU today, and she is absolutely wonderful. Her phone number is 212-731-5431.
My doctor said he had nothing for me after my last recurrance, so I went to her. She has two things to offer me. I'm thinking about my next move, but at least I now have some options.
Hang in there…you're in my prayers!
Tricia
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- June 11, 2012 at 11:07 pm
Karen –
Ok, I'm going to kick your A@#… just like you asked. I cannot not tell you how many times we have walked your road. We have sat in the doctor's office with smiles on our faces waiting for a new trial only to hear "I'm sorry, but….". And Dave's doctor has already gave him the "talk"… as in, you may not beat this…
You are absolutely right about "visible" disease. Once we started feeling Dave's subq's, we both got scared. And then angry… and then we got our fight on.
Don't be afraid to think outside the box… we hoped for so long to get Dave into an anti-pd1 trial, but it just hasn't happened yet. And the one treatment that everybody else said wouldn't work DID. How long? We don't know… but we will take what we can get.
You're a fighter – and we know that fighters from New York are even tougher – SOOOO… pull up them boot straps, wait to see what the scans show, and get your fight on girl….we're in your corner… YOU GOT THIS!!!
With much love from Western New York,
Dave and Maria
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- June 11, 2012 at 11:07 pm
Karen –
Ok, I'm going to kick your A@#… just like you asked. I cannot not tell you how many times we have walked your road. We have sat in the doctor's office with smiles on our faces waiting for a new trial only to hear "I'm sorry, but….". And Dave's doctor has already gave him the "talk"… as in, you may not beat this…
You are absolutely right about "visible" disease. Once we started feeling Dave's subq's, we both got scared. And then angry… and then we got our fight on.
Don't be afraid to think outside the box… we hoped for so long to get Dave into an anti-pd1 trial, but it just hasn't happened yet. And the one treatment that everybody else said wouldn't work DID. How long? We don't know… but we will take what we can get.
You're a fighter – and we know that fighters from New York are even tougher – SOOOO… pull up them boot straps, wait to see what the scans show, and get your fight on girl….we're in your corner… YOU GOT THIS!!!
With much love from Western New York,
Dave and Maria
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- June 12, 2012 at 11:44 am
Thanks, Dave & Maria. You guys are the best, and you’ve been through hell–i pray Dave stays where he’s at for a good long time.What does a sub-q feel like; is it solid- fixed in one spot or does it move around under your fingers?
Love from LI & NYC,
karen -
- June 12, 2012 at 11:44 am
Thanks, Dave & Maria. You guys are the best, and you’ve been through hell–i pray Dave stays where he’s at for a good long time.What does a sub-q feel like; is it solid- fixed in one spot or does it move around under your fingers?
Love from LI & NYC,
karen -
- June 12, 2012 at 11:44 am
Thanks, Dave & Maria. You guys are the best, and you’ve been through hell–i pray Dave stays where he’s at for a good long time.What does a sub-q feel like; is it solid- fixed in one spot or does it move around under your fingers?
Love from LI & NYC,
karen
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- June 11, 2012 at 11:07 pm
Karen –
Ok, I'm going to kick your A@#… just like you asked. I cannot not tell you how many times we have walked your road. We have sat in the doctor's office with smiles on our faces waiting for a new trial only to hear "I'm sorry, but….". And Dave's doctor has already gave him the "talk"… as in, you may not beat this…
You are absolutely right about "visible" disease. Once we started feeling Dave's subq's, we both got scared. And then angry… and then we got our fight on.
Don't be afraid to think outside the box… we hoped for so long to get Dave into an anti-pd1 trial, but it just hasn't happened yet. And the one treatment that everybody else said wouldn't work DID. How long? We don't know… but we will take what we can get.
You're a fighter – and we know that fighters from New York are even tougher – SOOOO… pull up them boot straps, wait to see what the scans show, and get your fight on girl….we're in your corner… YOU GOT THIS!!!
With much love from Western New York,
Dave and Maria
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- June 12, 2012 at 9:33 am
Just for the record..I am on BMS's Anti PD-1 since Fall 2010 and stage 4 NED….and I know several others also on it. No one I know has had pneumonia or colitis. Dr Wolchok is a good oncologist and there must be other reasons why he wouldn't recommend it. I see Dr Weber at Moffitt. I hung my hat on BMS's Anti PD-1 ( MDX 1106) and I am glad I did. Just check out cancer.gov if you are determined to find a different trial…
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- June 12, 2012 at 9:33 am
Just for the record..I am on BMS's Anti PD-1 since Fall 2010 and stage 4 NED….and I know several others also on it. No one I know has had pneumonia or colitis. Dr Wolchok is a good oncologist and there must be other reasons why he wouldn't recommend it. I see Dr Weber at Moffitt. I hung my hat on BMS's Anti PD-1 ( MDX 1106) and I am glad I did. Just check out cancer.gov if you are determined to find a different trial…
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- June 12, 2012 at 11:22 am
Hi Lynn,
No other reasons, he’s just very concerned because of the degree of colitis. I did research the possible side effects, and after pneumonia is listed stomach issues. If he had some other reason, he would tell me.I feel somewhat better today, just nervous about appts this week & next– derm tomorrow, CT & W. next week, after that, endo. Also knowing that I still have diarrhea being controlled by hydrocortisone and Endocort is weighing at me.
But generally better, thanks in large part to my friends here. So thank you my friends.
karen -
- June 12, 2012 at 11:22 am
Hi Lynn,
No other reasons, he’s just very concerned because of the degree of colitis. I did research the possible side effects, and after pneumonia is listed stomach issues. If he had some other reason, he would tell me.I feel somewhat better today, just nervous about appts this week & next– derm tomorrow, CT & W. next week, after that, endo. Also knowing that I still have diarrhea being controlled by hydrocortisone and Endocort is weighing at me.
But generally better, thanks in large part to my friends here. So thank you my friends.
karen -
- June 12, 2012 at 11:57 am
Karen, count yourself among the lucky and don't beat yourself up about not getting in the trial. I wanted Yervoy so bad as Dr. W's patient-back when he was doing the research, he actually called the company while I was in an appointment. I was going through brain surgeries at the time, and I figured it would clean up the residual cells and help prevent a recurrence. Never got it, but I'm still alive. I have been in that room before, believe me. My first 2 rounds of biochemotherapy showed 90%resolution of mets, then next 4 showed that they had stayed the same (no change). I stuck it out for another 4 years, in the end, I am still here, Have you considered asking him about a vaccine trial?
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- June 12, 2012 at 11:57 am
Karen, count yourself among the lucky and don't beat yourself up about not getting in the trial. I wanted Yervoy so bad as Dr. W's patient-back when he was doing the research, he actually called the company while I was in an appointment. I was going through brain surgeries at the time, and I figured it would clean up the residual cells and help prevent a recurrence. Never got it, but I'm still alive. I have been in that room before, believe me. My first 2 rounds of biochemotherapy showed 90%resolution of mets, then next 4 showed that they had stayed the same (no change). I stuck it out for another 4 years, in the end, I am still here, Have you considered asking him about a vaccine trial?
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- June 12, 2012 at 1:48 pm
No, but now I will, Jag. Thanks. You reminded me of how badly I wanted to get into the Curetech Anti-PD1 trial, and they wouldn't accept me because i was only Stage III unresect. They wound up pulling the trial because the drug wasn't working. Maybe this will be a blessing in disguise as well.
take care,
karen
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- June 12, 2012 at 1:48 pm
No, but now I will, Jag. Thanks. You reminded me of how badly I wanted to get into the Curetech Anti-PD1 trial, and they wouldn't accept me because i was only Stage III unresect. They wound up pulling the trial because the drug wasn't working. Maybe this will be a blessing in disguise as well.
take care,
karen
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- June 12, 2012 at 1:48 pm
No, but now I will, Jag. Thanks. You reminded me of how badly I wanted to get into the Curetech Anti-PD1 trial, and they wouldn't accept me because i was only Stage III unresect. They wound up pulling the trial because the drug wasn't working. Maybe this will be a blessing in disguise as well.
take care,
karen
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- June 12, 2012 at 9:03 pm
Jag,
I am glad you posted a comment. You are def. one i was hoping would respond to Karen. You are a fighter/trooper !!!!!!
I read your profile and you keep all of us fighting. Congrats on your baby. I really appreciate your posts/comments…as I am sure all of us do !!!!!!
Susan R. NYC
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- June 12, 2012 at 9:03 pm
Jag,
I am glad you posted a comment. You are def. one i was hoping would respond to Karen. You are a fighter/trooper !!!!!!
I read your profile and you keep all of us fighting. Congrats on your baby. I really appreciate your posts/comments…as I am sure all of us do !!!!!!
Susan R. NYC
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- June 12, 2012 at 9:03 pm
Jag,
I am glad you posted a comment. You are def. one i was hoping would respond to Karen. You are a fighter/trooper !!!!!!
I read your profile and you keep all of us fighting. Congrats on your baby. I really appreciate your posts/comments…as I am sure all of us do !!!!!!
Susan R. NYC
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- June 12, 2012 at 11:57 am
Karen, count yourself among the lucky and don't beat yourself up about not getting in the trial. I wanted Yervoy so bad as Dr. W's patient-back when he was doing the research, he actually called the company while I was in an appointment. I was going through brain surgeries at the time, and I figured it would clean up the residual cells and help prevent a recurrence. Never got it, but I'm still alive. I have been in that room before, believe me. My first 2 rounds of biochemotherapy showed 90%resolution of mets, then next 4 showed that they had stayed the same (no change). I stuck it out for another 4 years, in the end, I am still here, Have you considered asking him about a vaccine trial?
-
- June 12, 2012 at 11:22 am
Hi Lynn,
No other reasons, he’s just very concerned because of the degree of colitis. I did research the possible side effects, and after pneumonia is listed stomach issues. If he had some other reason, he would tell me.I feel somewhat better today, just nervous about appts this week & next– derm tomorrow, CT & W. next week, after that, endo. Also knowing that I still have diarrhea being controlled by hydrocortisone and Endocort is weighing at me.
But generally better, thanks in large part to my friends here. So thank you my friends.
karen
-
- June 12, 2012 at 9:33 am
Just for the record..I am on BMS's Anti PD-1 since Fall 2010 and stage 4 NED….and I know several others also on it. No one I know has had pneumonia or colitis. Dr Wolchok is a good oncologist and there must be other reasons why he wouldn't recommend it. I see Dr Weber at Moffitt. I hung my hat on BMS's Anti PD-1 ( MDX 1106) and I am glad I did. Just check out cancer.gov if you are determined to find a different trial…
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- June 12, 2012 at 7:27 pm
Karen – so sorry to hear what you are dealing with right now. I am afraid I do not have much to offer, but there are clinical trials taking place at many locations and not just at Sloan…you could check the NIH web site to see if there is anything else out there.Wishing you all the best…this is the best place to come…I have been coming here for help and support for six years.
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- June 12, 2012 at 7:27 pm
Karen – so sorry to hear what you are dealing with right now. I am afraid I do not have much to offer, but there are clinical trials taking place at many locations and not just at Sloan…you could check the NIH web site to see if there is anything else out there.Wishing you all the best…this is the best place to come…I have been coming here for help and support for six years.
-
- June 12, 2012 at 7:27 pm
Karen – so sorry to hear what you are dealing with right now. I am afraid I do not have much to offer, but there are clinical trials taking place at many locations and not just at Sloan…you could check the NIH web site to see if there is anything else out there.Wishing you all the best…this is the best place to come…I have been coming here for help and support for six years.
-
- June 12, 2012 at 8:54 pm
Karen,
I hear you 1,000 % !!!!!!! My brother is going to have scans in 2 weeks after finishing temodor and 3 infusions of abraxane.
We just can't take anymore bad news but hoping the best. I have read your posts and see you are a fighter and need to continue. You are in good hands at sloan. My brother is under pavlik at NYU. You may need chemo to stop everything in its tracks and then consider a trial. Keep your nutrition up as best as can and then get those boost pulled up and go fight.
I see many patients on this forum who have more extensive disease and they keep on kicking this in the Butt !!!!!!!!
Keep us posted and my thoughts are with you.
Susan R. NYC
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- June 12, 2012 at 8:54 pm
Karen,
I hear you 1,000 % !!!!!!! My brother is going to have scans in 2 weeks after finishing temodor and 3 infusions of abraxane.
We just can't take anymore bad news but hoping the best. I have read your posts and see you are a fighter and need to continue. You are in good hands at sloan. My brother is under pavlik at NYU. You may need chemo to stop everything in its tracks and then consider a trial. Keep your nutrition up as best as can and then get those boost pulled up and go fight.
I see many patients on this forum who have more extensive disease and they keep on kicking this in the Butt !!!!!!!!
Keep us posted and my thoughts are with you.
Susan R. NYC
-
- June 12, 2012 at 8:54 pm
Karen,
I hear you 1,000 % !!!!!!! My brother is going to have scans in 2 weeks after finishing temodor and 3 infusions of abraxane.
We just can't take anymore bad news but hoping the best. I have read your posts and see you are a fighter and need to continue. You are in good hands at sloan. My brother is under pavlik at NYU. You may need chemo to stop everything in its tracks and then consider a trial. Keep your nutrition up as best as can and then get those boost pulled up and go fight.
I see many patients on this forum who have more extensive disease and they keep on kicking this in the Butt !!!!!!!!
Keep us posted and my thoughts are with you.
Susan R. NYC
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- June 13, 2012 at 1:52 am
Karen,
Sometimes you need to give yourself a day to mope around and then get yourself together and be ready to fight. It hasn't been easy with you having to be on steroids and I'm sure it has given you more issues. A day or two has gone by so now it's time to get yourself together for the next step.
I think of you often. Good luck with the scans which I'm sure is bringing on more anxiety.
Linda
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- June 13, 2012 at 1:52 am
Karen,
Sometimes you need to give yourself a day to mope around and then get yourself together and be ready to fight. It hasn't been easy with you having to be on steroids and I'm sure it has given you more issues. A day or two has gone by so now it's time to get yourself together for the next step.
I think of you often. Good luck with the scans which I'm sure is bringing on more anxiety.
Linda
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- June 13, 2012 at 1:52 am
Karen,
Sometimes you need to give yourself a day to mope around and then get yourself together and be ready to fight. It hasn't been easy with you having to be on steroids and I'm sure it has given you more issues. A day or two has gone by so now it's time to get yourself together for the next step.
I think of you often. Good luck with the scans which I'm sure is bringing on more anxiety.
Linda
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- June 13, 2012 at 7:07 am
Karen, I am sorry to read of your situation. I think that it would be an idea to print
out the info presented in the following thread, and then ask for your oncologist's
opinion based on what Jimmy B has said."Can the Body's Immune Response Help Treat Cancer?"
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/can-body-s-immune-response-help-treat-cancer#comment-39097
(If it doesn't work, just copy and paste the link into the address bar of your browser).Hope this helps. You are in my thoughts and prayers.
Frank from Australia
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- June 13, 2012 at 7:07 am
Karen, I am sorry to read of your situation. I think that it would be an idea to print
out the info presented in the following thread, and then ask for your oncologist's
opinion based on what Jimmy B has said."Can the Body's Immune Response Help Treat Cancer?"
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/can-body-s-immune-response-help-treat-cancer#comment-39097
(If it doesn't work, just copy and paste the link into the address bar of your browser).Hope this helps. You are in my thoughts and prayers.
Frank from Australia
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- June 13, 2012 at 7:07 am
Karen, I am sorry to read of your situation. I think that it would be an idea to print
out the info presented in the following thread, and then ask for your oncologist's
opinion based on what Jimmy B has said."Can the Body's Immune Response Help Treat Cancer?"
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/can-body-s-immune-response-help-treat-cancer#comment-39097
(If it doesn't work, just copy and paste the link into the address bar of your browser).Hope this helps. You are in my thoughts and prayers.
Frank from Australia
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- June 13, 2012 at 8:53 pm
Thank you so much everyone for all your support.
I just had the met removed below my chin, and the others frozen.
I appreciate everyone's suggestions. I am for sure sticking with Dr. Wolchok; I'm seeing him next Thursday after my CT scan to figure out Plan B.
The hydrocort is not nearly as harsh on me as the pred. was…and it's giving me a mega-appetite. I've gained back 8 lbs. already, so that's good news.
Bootstraps are pulled back up–ready to kick the Beast's ass!
Be well, everyone,
karen
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- June 13, 2012 at 8:53 pm
Thank you so much everyone for all your support.
I just had the met removed below my chin, and the others frozen.
I appreciate everyone's suggestions. I am for sure sticking with Dr. Wolchok; I'm seeing him next Thursday after my CT scan to figure out Plan B.
The hydrocort is not nearly as harsh on me as the pred. was…and it's giving me a mega-appetite. I've gained back 8 lbs. already, so that's good news.
Bootstraps are pulled back up–ready to kick the Beast's ass!
Be well, everyone,
karen
-
- June 13, 2012 at 8:53 pm
Thank you so much everyone for all your support.
I just had the met removed below my chin, and the others frozen.
I appreciate everyone's suggestions. I am for sure sticking with Dr. Wolchok; I'm seeing him next Thursday after my CT scan to figure out Plan B.
The hydrocort is not nearly as harsh on me as the pred. was…and it's giving me a mega-appetite. I've gained back 8 lbs. already, so that's good news.
Bootstraps are pulled back up–ready to kick the Beast's ass!
Be well, everyone,
karen
-
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