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smm991.
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- August 21, 2011 at 3:33 am
Hi everyone.
Got the biopsy results yesterday. On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin. The new area next to that section and very close to my eye is indeed melanoma. Very disappointing to hear that it's still spreading.
Hi everyone.
Got the biopsy results yesterday. On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin. The new area next to that section and very close to my eye is indeed melanoma. Very disappointing to hear that it's still spreading.
I am at week 14 of ipi (had 4th and final infusion at week 10.) So far, I'm a partial responder. Dr. Wolchuk said that hes seen people still growing mel at week 12 with a big turn-around at week 16. But he also says that I need to think ahead as if I will only see a partial response. Nobody's happy. I am absolutely not a candidate for another surgery…there's no room for margins either near my eye or my ear, which it's touching.
Attn Jimmy: Interestingly, Dr. Halpern (in conjunction w/Wolchuk) prescribed Aldara (now available in generic). I'm to put it on generously (use the whole packet) every night, and cover w/saran wrap for about 30 minutes. They're hoping it will work w/the Ipi. He also said that since it's so close to my eye, my eye-lids might blow up.
Aldera Question: I know the skin is supposed to react–do you stop the aldara if it blisters, etc?? I feel so vulnerable because Halpern is on vacation this week & Wolchuk is away as well. And I feel so stupid because Halpern told me that it's supposed to blister, but I didn't ask him what to do then, and now he's away! (Yes, I know that there are other docs at Sloan, and I will call them this week.)
Empire BC/BS paid for all my Ipi infusions BUT THEY WOULD ONLY PAY FOR 15 PACKETS OF ALDERA for one month! I'm hoping Halpern's office can fight it.
Meanwhile, we're seeing Dr. Wolchuk on Sept. 1. If I haven't miraculously responed fully to the Ipi, we have to decide next step–a combo of 3 chemo drugs (I stupidly didn't write them down) or IL-2. They don't give IL-2 at Sloan, but at Yale-New Haven. Also, I'm Braf negative.
My husband heard him say that both chemo and IL-2 have a low response rate–does 20% sound right?? I'm sure I heard that if one responds to IL-2 it's a lasting response. He said that the chemo doesn't have many side-effects, and I already know how brutal the IL-2 can be. My 21-year old son says "go for the most aggressive treatment."
I guess it's wait and see with the ipi/aldara and more decisions on the 1st.
All advice, suggestions welcome!
thanks,
karen
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- August 21, 2011 at 4:17 am
Karen, am I sorry to read that melanoma is still spreading. I would just like to refer
you to this recent thread with some good info on IL-2:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/just-told-stage-4-il-2-or-yervoy#comment-24275Hope this helps.
Frank from Australia
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- August 21, 2011 at 4:17 am
Karen, am I sorry to read that melanoma is still spreading. I would just like to refer
you to this recent thread with some good info on IL-2:
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/just-told-stage-4-il-2-or-yervoy#comment-24275Hope this helps.
Frank from Australia
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- August 21, 2011 at 4:43 am
Karen,
I'm sorry to hear that this crap is still spreading. I hope that you do respond soon and also the aldera works. Halpern was my derm years and years ago when he was at Univ of PA. I still have his expert stitches on my arms! I would call his nurse, she will either contact him or put you in contact with someone that can advise what you should do.
I don't know about the chemo combo but I think the total responders to IL2 is less than 20%. However, some areas of the body seem to have better responses. I think sub q's had a better response. There are a few on this board that have been long time survivors. Rick from NC is somewhere around 18 years! I met him awhile back at the NC Symposium. DebbieVA and Jane are also both long time survivors.
Have they tested you HLA protein markers? This is a simple blood test. There are trials out there that have been successful for some that you have to be HLA 0201 positive.
Sending cyber hugs,
Linda
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- August 21, 2011 at 4:43 am
Karen,
I'm sorry to hear that this crap is still spreading. I hope that you do respond soon and also the aldera works. Halpern was my derm years and years ago when he was at Univ of PA. I still have his expert stitches on my arms! I would call his nurse, she will either contact him or put you in contact with someone that can advise what you should do.
I don't know about the chemo combo but I think the total responders to IL2 is less than 20%. However, some areas of the body seem to have better responses. I think sub q's had a better response. There are a few on this board that have been long time survivors. Rick from NC is somewhere around 18 years! I met him awhile back at the NC Symposium. DebbieVA and Jane are also both long time survivors.
Have they tested you HLA protein markers? This is a simple blood test. There are trials out there that have been successful for some that you have to be HLA 0201 positive.
Sending cyber hugs,
Linda
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- August 21, 2011 at 6:23 am
Karen
Very sorry for your news. You asked for IL-2 comments. Should you choose this treatment path, I can personally vouch for the staff at Yale-New Haven. Like I’m sure they are at many locations, they are top drawer.
Good luck.-
- August 21, 2011 at 12:13 pm
Dear Karen,
I am sorry for what you are going through. A partial response to Ipi is better than none and your doctor is also saying what mine said, which is new melanoma growth can occur all through the treatments and then the Ipi kicks in and you have a response. Its discouraging while you are having the treatments tho to wtch the new melanoma spots grow (or feel them). You said you had your 4 doses and the last one was at week ten? What kind of schedule were you on? My Ipi was 3mg/kg and spaced every three weeks so the 4th dose was at week 12. Just wondering about your course of treatment.
I have no first hand knowledge of the chemo combo or Il 2 but know that I would be game to go for one of those courses of treatments if I needed to. I am BRAF negative also.
I'll be thinking of you with Hope and Positive energy coming your way!
Vermont_Donna, stage 3a, NED
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- August 21, 2011 at 6:10 pm
I thought so too, Donna, but here's how it works out:
1st dose – week 1
2nd dose week 4
3rd dose week 7
4th dose week 10
We think it's week 12 because we multiply 4 doses x 3 weeks, but the above is correct.
Thanks & I can use all the positive energy I can get!
karen
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- August 21, 2011 at 6:10 pm
I thought so too, Donna, but here's how it works out:
1st dose – week 1
2nd dose week 4
3rd dose week 7
4th dose week 10
We think it's week 12 because we multiply 4 doses x 3 weeks, but the above is correct.
Thanks & I can use all the positive energy I can get!
karen
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- August 21, 2011 at 12:13 pm
Dear Karen,
I am sorry for what you are going through. A partial response to Ipi is better than none and your doctor is also saying what mine said, which is new melanoma growth can occur all through the treatments and then the Ipi kicks in and you have a response. Its discouraging while you are having the treatments tho to wtch the new melanoma spots grow (or feel them). You said you had your 4 doses and the last one was at week ten? What kind of schedule were you on? My Ipi was 3mg/kg and spaced every three weeks so the 4th dose was at week 12. Just wondering about your course of treatment.
I have no first hand knowledge of the chemo combo or Il 2 but know that I would be game to go for one of those courses of treatments if I needed to. I am BRAF negative also.
I'll be thinking of you with Hope and Positive energy coming your way!
Vermont_Donna, stage 3a, NED
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- August 21, 2011 at 2:56 pm
Karen,
Sorry to read that the mel is still there below the skin, but like the other posters here I wish you ultimate success on Ipi.
With respect to the question of the 3 chemo drugs, I saw Dr Wolchok several months ago and he also presented a 3 agent chemo regimen and IL-2 as options to consider. Assuming it is the same regimen, they were chemos from the "carboplatin" family (I wrote that name down at the time but didn't follow through on research as I went ahead with IL-2, so I don't know more than the name).
I did proceed with IL-2, but I was not a responder. That said, I am still happy I did it. The experience was pretty awful (as everyone knows), but the relatively quick recovery time coupled with the chance of a very durable response was what made up my mind. Great nursing staff also make the whole thing so much more tolerable. Re the decision, I also felt that I didn't want the IL-2 option hanging over me like the sword of Damocles if I proceeded through other treatment options that were not successful – particularly if my health deteriorated such that the IL-2 'experience' might' be tougher later on. So now, despite it not having worked I have no regrets and am driving on. But as per so much around the mel topic there seem to be no right or wrong answers.
I wish you well.
J
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- August 22, 2011 at 2:15 am
I actually had my IL-2 at MDA, although I did visit Yale before deciding (my decision to go with MDA for IL-2 was no reflection of Yale's expertise or staff – there were other personal factors in the decision). That said I asked the visitor question at Yale, and put it in place at MDA. You are allowed people with you, and they can stay over. It was my intention that someone would stay over, but in the end I preferred if they left me overnight. I'm glad I had the option, but with a great nursing care I didn't feel the need for overnight company. But I did appreciate the assistance during the day (getting drinks or snacks for me etc).
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- August 22, 2011 at 2:15 am
I actually had my IL-2 at MDA, although I did visit Yale before deciding (my decision to go with MDA for IL-2 was no reflection of Yale's expertise or staff – there were other personal factors in the decision). That said I asked the visitor question at Yale, and put it in place at MDA. You are allowed people with you, and they can stay over. It was my intention that someone would stay over, but in the end I preferred if they left me overnight. I'm glad I had the option, but with a great nursing care I didn't feel the need for overnight company. But I did appreciate the assistance during the day (getting drinks or snacks for me etc).
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- August 22, 2011 at 5:21 am
Karen
In Oct/Nov 2009 (see my profile) I went through IL-2 at Yale New Haven. Non-family members and overnight visiting was allowed. It was comforting to know that was allowed but I ultimately did not take advantage of the overnight opportunity. The decision was personal, but Yale New Haven is only 30 minutes from my home not the drive from Long Island. -
- August 22, 2011 at 5:21 am
Karen
In Oct/Nov 2009 (see my profile) I went through IL-2 at Yale New Haven. Non-family members and overnight visiting was allowed. It was comforting to know that was allowed but I ultimately did not take advantage of the overnight opportunity. The decision was personal, but Yale New Haven is only 30 minutes from my home not the drive from Long Island.
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- August 21, 2011 at 2:56 pm
Karen,
Sorry to read that the mel is still there below the skin, but like the other posters here I wish you ultimate success on Ipi.
With respect to the question of the 3 chemo drugs, I saw Dr Wolchok several months ago and he also presented a 3 agent chemo regimen and IL-2 as options to consider. Assuming it is the same regimen, they were chemos from the "carboplatin" family (I wrote that name down at the time but didn't follow through on research as I went ahead with IL-2, so I don't know more than the name).
I did proceed with IL-2, but I was not a responder. That said, I am still happy I did it. The experience was pretty awful (as everyone knows), but the relatively quick recovery time coupled with the chance of a very durable response was what made up my mind. Great nursing staff also make the whole thing so much more tolerable. Re the decision, I also felt that I didn't want the IL-2 option hanging over me like the sword of Damocles if I proceeded through other treatment options that were not successful – particularly if my health deteriorated such that the IL-2 'experience' might' be tougher later on. So now, despite it not having worked I have no regrets and am driving on. But as per so much around the mel topic there seem to be no right or wrong answers.
I wish you well.
J
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- August 21, 2011 at 11:40 pm
Hi,
I have used aldara for years. Please be careful to follow the instructions.
My experience using aldara has caused sever rashes around area, aldara eats into the skin & will leave a scab, then & heal. Sometimes it will leave a scar. I have never got blisters. I suggest you read patient info sheet for aldar so you know what to expect.
This drug can be very severe to your skin. Basically, you will know if it is working because it will eat into your skin, leaving a open sore, then heal & hopefully not leave a scar.
Hope aldara works foryou
Patti
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- August 21, 2011 at 11:40 pm
Hi,
I have used aldara for years. Please be careful to follow the instructions.
My experience using aldara has caused sever rashes around area, aldara eats into the skin & will leave a scab, then & heal. Sometimes it will leave a scar. I have never got blisters. I suggest you read patient info sheet for aldar so you know what to expect.
This drug can be very severe to your skin. Basically, you will know if it is working because it will eat into your skin, leaving a open sore, then heal & hopefully not leave a scar.
Hope aldara works foryou
Patti
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- August 22, 2011 at 5:06 pm
Karen,
I have no experience with either IL-2 or aldara, but I just wanted to wish you the best. I really thing that Dr. Wolchok is top notch, so you're in great hands. I hope the Ipi will kick in soon so you do not have to bother with any additional treatments. Best wishes for a late response!
Tricia
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- August 23, 2011 at 4:28 pm
Thanks, everyone for your responses and help.
From everything I've read, I'm going to try for the IL-2, because now I know that if I get brain mets, I won't be eligible. I don't don't want to lose the opportunity.
I can't wait till Wolchuk gets back and I can see him on the 1st.
Oh yes, I found my original path report and I'll update my profile tonite.
take care,
karen
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- August 25, 2011 at 11:42 am
Hi Karen,
My husband Dave starts IL-2 on Monday, the 29th (crossing our fingers). Be sure to look up Jane from Maine's list of "what to bring". I'll keep you posted on how he does.
Just wanted to let you know, they are combining IL-2 with some vaccines (ESO, MAGE) as well as the TIL study at NIH and other hospitals. May be worth looking into as well.
Best wishes to you,
Maria
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- August 25, 2011 at 6:11 pm
Hi Maria, Best of luck to Dave, please keep us posted!
I tried to find Jane's tips on this site and couldn't get the link:
http://www.operationsunshield.org/tipsheet.html
If anyone has Jane's tips, please post here or email me at [email protected]
THANKS SO MUCH,
karen
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- August 25, 2011 at 6:11 pm
Hi Maria, Best of luck to Dave, please keep us posted!
I tried to find Jane's tips on this site and couldn't get the link:
http://www.operationsunshield.org/tipsheet.html
If anyone has Jane's tips, please post here or email me at [email protected]
THANKS SO MUCH,
karen
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- August 25, 2011 at 11:42 am
Hi Karen,
My husband Dave starts IL-2 on Monday, the 29th (crossing our fingers). Be sure to look up Jane from Maine's list of "what to bring". I'll keep you posted on how he does.
Just wanted to let you know, they are combining IL-2 with some vaccines (ESO, MAGE) as well as the TIL study at NIH and other hospitals. May be worth looking into as well.
Best wishes to you,
Maria
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- August 23, 2011 at 4:28 pm
Thanks, everyone for your responses and help.
From everything I've read, I'm going to try for the IL-2, because now I know that if I get brain mets, I won't be eligible. I don't don't want to lose the opportunity.
I can't wait till Wolchuk gets back and I can see him on the 1st.
Oh yes, I found my original path report and I'll update my profile tonite.
take care,
karen
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- August 22, 2011 at 5:06 pm
Karen,
I have no experience with either IL-2 or aldara, but I just wanted to wish you the best. I really thing that Dr. Wolchok is top notch, so you're in great hands. I hope the Ipi will kick in soon so you do not have to bother with any additional treatments. Best wishes for a late response!
Tricia
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- August 26, 2011 at 5:47 am
IL-2 has a 5-6 % complete response rate in across the board melanoma patients.. It's complete response rate may remain complete until old age gets one. 14-15 % across the board melanoma patients historically have a partial response. A partial response can be anywhere from a slowing down of the rate of tumor growth through stability and into partial remission for varying lengths of time. IL-2 is the only treatment other than surgery that has provided the long term success rate. Ipi/Yerzog is having a similar partial response rate (not necessaily on the same patients), but the long term total remission rate is, as of yet, unknown. IL-2 is tough in the short term, but oe has a quick recovery from the side effects. i chose to go the IL-2 rout when I was at my maximum health and found it very doable. it stabilkized me for 20 months until it stopped workig, but by then something else was available for my paricular form of melannoma.
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- August 26, 2011 at 4:27 pm
Thanks, Jerry,
My decision has been made. I too want to do the IL-2 while I am relatively healthy.
Now I just have to agonize till Thursday when I see Wolchuk & he can get the ball rolling. I THINK he calls Yale to get me an app't w/a doc there, then they set the ball rolling.
Be well,
karen
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- August 26, 2011 at 4:27 pm
Thanks, Jerry,
My decision has been made. I too want to do the IL-2 while I am relatively healthy.
Now I just have to agonize till Thursday when I see Wolchuk & he can get the ball rolling. I THINK he calls Yale to get me an app't w/a doc there, then they set the ball rolling.
Be well,
karen
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- August 26, 2011 at 5:47 am
IL-2 has a 5-6 % complete response rate in across the board melanoma patients.. It's complete response rate may remain complete until old age gets one. 14-15 % across the board melanoma patients historically have a partial response. A partial response can be anywhere from a slowing down of the rate of tumor growth through stability and into partial remission for varying lengths of time. IL-2 is the only treatment other than surgery that has provided the long term success rate. Ipi/Yerzog is having a similar partial response rate (not necessaily on the same patients), but the long term total remission rate is, as of yet, unknown. IL-2 is tough in the short term, but oe has a quick recovery from the side effects. i chose to go the IL-2 rout when I was at my maximum health and found it very doable. it stabilkized me for 20 months until it stopped workig, but by then something else was available for my paricular form of melannoma.
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- September 3, 2011 at 3:24 am
I am on day 17 of aldara and i am blistering like mad, which is a good thing! As I understand it, the blisters mean the drug is working. The good thing is that the blisters do not hurt. I have to use it between my lip and up to the top of my nose. I learned the hard way how easy it is to seep into my mouth (my lips blew up!). I was a mess with blistering in my mouth. Be careful with your eye…use vaseline to protect skin that should not get aldara. Also, for me it took about a week or so using it before i was flu-like. Fingers crossed the drug works!!
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- September 4, 2011 at 1:39 am
not a hint of redness or blistering, and I'm on day 16. Not even on the skin that's clear between the two areas of mel, where i was instructed to use it. I put it right next to my eye AND cover the whole mess with saran wrap for 1/2 hour–nothing. They're gonna keep me on it during IL-2.
I'm glad it's working for you. Maybe I'll be a late responder for everything!
karen
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- September 4, 2011 at 3:15 am
Go Gal, Go!
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- September 4, 2011 at 3:15 am
Go Gal, Go!
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- September 4, 2011 at 1:39 am
not a hint of redness or blistering, and I'm on day 16. Not even on the skin that's clear between the two areas of mel, where i was instructed to use it. I put it right next to my eye AND cover the whole mess with saran wrap for 1/2 hour–nothing. They're gonna keep me on it during IL-2.
I'm glad it's working for you. Maybe I'll be a late responder for everything!
karen
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- September 3, 2011 at 3:24 am
I am on day 17 of aldara and i am blistering like mad, which is a good thing! As I understand it, the blisters mean the drug is working. The good thing is that the blisters do not hurt. I have to use it between my lip and up to the top of my nose. I learned the hard way how easy it is to seep into my mouth (my lips blew up!). I was a mess with blistering in my mouth. Be careful with your eye…use vaseline to protect skin that should not get aldara. Also, for me it took about a week or so using it before i was flu-like. Fingers crossed the drug works!!
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