› Forums › General Melanoma Community › Decisions, Decisions….
- This topic has 21 replies, 5 voices, and was last updated 10 years, 7 months ago by
Keepingyourchinup.
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- June 15, 2015 at 11:46 pm
Please forgive me if this is not the place to put this but I need to say a few things and no one else seems to understand me today. So I have melanoma stage IIIA. I had a PET Scan today and it is negative; yeah, I think! I have limited options for treatment because of the stage I am, which is peglyated interferon, I almost wanted to say forget the treatment today after my results of the PET scan but then was reminded that melanoma can return and that I am at a more advanced stage, Talk about a little bit of a downer. So I searched for statistics, yes I know they are all individual…; and could really find none that say when or if it will return. I know this is a personal decision and I had originally decided to proceed with treatment until I could no longer handle it or if it changed my quality of life. I guess I am still on that path since my reminder of a more advanced stage. This post really has no meaning other than I really just want to scream right now. Ever have those feelings when others try to understand but really cant or don't? I sound like I am having a pity party, and sort of am, so do forgive the whining…. as I really just needed to vent,
Kathy
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- June 16, 2015 at 12:30 am
Hi
weve all been and return there! I am a 3A as well and the lack of treatment options sometimes makes you feel a little like a bench warmer in an important battle. In my case, I turned down interferon and changed providers. Once with my new team, i was presented the option of a VLND (right groin) or wait and watch. I opted for the CLND and even though a lot of,the data suggests it is statistically questionable, I will never second guess the decision. Partially because I have had very few side effects….virtually none and in my mind it was the best decision for me at that time? So far I have been fortunate with four years of no detectable recurrence (latest scan last week). I also enrolled in a clinical trial because,it seemed to be a reasonable step even though there is no,indication at this point that this particular regimen helped.
So I understand your frustration. My suggestion is move forward with your decision; whatever it may be. For advanced melanoma, 3a statistically is better than certain lower stages. Hang in there. It's a long road and statistics are on our side.
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- June 16, 2015 at 2:21 pm
Thank you for the reply. I appreciate the feedback and the encouragement. Some days are just hard BUT it could be 100 times worse so I just have to put my big girl pants on and suck it up today!
Kathy
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- June 16, 2015 at 2:21 pm
Thank you for the reply. I appreciate the feedback and the encouragement. Some days are just hard BUT it could be 100 times worse so I just have to put my big girl pants on and suck it up today!
Kathy
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- June 16, 2015 at 2:21 pm
Thank you for the reply. I appreciate the feedback and the encouragement. Some days are just hard BUT it could be 100 times worse so I just have to put my big girl pants on and suck it up today!
Kathy
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- June 16, 2015 at 12:30 am
Hi
weve all been and return there! I am a 3A as well and the lack of treatment options sometimes makes you feel a little like a bench warmer in an important battle. In my case, I turned down interferon and changed providers. Once with my new team, i was presented the option of a VLND (right groin) or wait and watch. I opted for the CLND and even though a lot of,the data suggests it is statistically questionable, I will never second guess the decision. Partially because I have had very few side effects….virtually none and in my mind it was the best decision for me at that time? So far I have been fortunate with four years of no detectable recurrence (latest scan last week). I also enrolled in a clinical trial because,it seemed to be a reasonable step even though there is no,indication at this point that this particular regimen helped.
So I understand your frustration. My suggestion is move forward with your decision; whatever it may be. For advanced melanoma, 3a statistically is better than certain lower stages. Hang in there. It's a long road and statistics are on our side.
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- June 16, 2015 at 12:30 am
Hi
weve all been and return there! I am a 3A as well and the lack of treatment options sometimes makes you feel a little like a bench warmer in an important battle. In my case, I turned down interferon and changed providers. Once with my new team, i was presented the option of a VLND (right groin) or wait and watch. I opted for the CLND and even though a lot of,the data suggests it is statistically questionable, I will never second guess the decision. Partially because I have had very few side effects….virtually none and in my mind it was the best decision for me at that time? So far I have been fortunate with four years of no detectable recurrence (latest scan last week). I also enrolled in a clinical trial because,it seemed to be a reasonable step even though there is no,indication at this point that this particular regimen helped.
So I understand your frustration. My suggestion is move forward with your decision; whatever it may be. For advanced melanoma, 3a statistically is better than certain lower stages. Hang in there. It's a long road and statistics are on our side.
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- June 16, 2015 at 2:15 am
I was dx'd with 3c, unknown primary, BRAF negative in Jan. 2015. I had CLND (right axilla) and was offered Interferon. I know from the first day that I would not do Interferon…for me personally, I just don't see enough of an up side. I have never once doubted my decision and have never looked back.
There are few options for us 3's, so I'm waiting as patiently as possible for a clinical trial to come along that I qualify for. I've got my first set of post-surgery scans next month, so we'll see if that pushes me to Stage 4…not preferable by any means, but there are lots more options at 4.
Interferon is a hugely personal decision. I would say that unless you are absolutely positive that Interferon is NOT for you, then you should probably at least try it.
Very best wishes to you –
Sheila
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- June 16, 2015 at 2:23 pm
Thank you for sharing your story! I think I know my decision so I will at least try it. The "traditional" Interferon was a big no for me but I will try the pegylated version and see what happens. I hope your scans are clear and you find that clinical trial! It is a hunt for all of us, I think.
Kathy
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- June 16, 2015 at 2:23 pm
Thank you for sharing your story! I think I know my decision so I will at least try it. The "traditional" Interferon was a big no for me but I will try the pegylated version and see what happens. I hope your scans are clear and you find that clinical trial! It is a hunt for all of us, I think.
Kathy
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- June 16, 2015 at 2:23 pm
Thank you for sharing your story! I think I know my decision so I will at least try it. The "traditional" Interferon was a big no for me but I will try the pegylated version and see what happens. I hope your scans are clear and you find that clinical trial! It is a hunt for all of us, I think.
Kathy
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- June 16, 2015 at 2:15 am
I was dx'd with 3c, unknown primary, BRAF negative in Jan. 2015. I had CLND (right axilla) and was offered Interferon. I know from the first day that I would not do Interferon…for me personally, I just don't see enough of an up side. I have never once doubted my decision and have never looked back.
There are few options for us 3's, so I'm waiting as patiently as possible for a clinical trial to come along that I qualify for. I've got my first set of post-surgery scans next month, so we'll see if that pushes me to Stage 4…not preferable by any means, but there are lots more options at 4.
Interferon is a hugely personal decision. I would say that unless you are absolutely positive that Interferon is NOT for you, then you should probably at least try it.
Very best wishes to you –
Sheila
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- June 16, 2015 at 2:15 am
I was dx'd with 3c, unknown primary, BRAF negative in Jan. 2015. I had CLND (right axilla) and was offered Interferon. I know from the first day that I would not do Interferon…for me personally, I just don't see enough of an up side. I have never once doubted my decision and have never looked back.
There are few options for us 3's, so I'm waiting as patiently as possible for a clinical trial to come along that I qualify for. I've got my first set of post-surgery scans next month, so we'll see if that pushes me to Stage 4…not preferable by any means, but there are lots more options at 4.
Interferon is a hugely personal decision. I would say that unless you are absolutely positive that Interferon is NOT for you, then you should probably at least try it.
Very best wishes to you –
Sheila
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- June 16, 2015 at 10:19 pm
Kathy,
We have all had those days. Hopefully you don't have too many. Just remember that one of the contraindicators for interferon is depression so take care of yourself. That being said this is a good place to Rant…we understand, where many others may not.
Let give you some good news though, I am stage 3a too. I am now 5 years NED. I chose just to wait and watch. I still have all fingers and toes crossed, but I'm feeling pretty confident.
Good Luck!
Mary
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- June 19, 2015 at 12:55 am
Congrats Mary! That is great news and thanks for sharing that! I start my treatment tomorrow so we shall see….. I finally put my 'big girl pants" on and am ready…. I think. By the way, I love the statement under your name; it says alot!
Kathy
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- June 19, 2015 at 12:55 am
Congrats Mary! That is great news and thanks for sharing that! I start my treatment tomorrow so we shall see….. I finally put my 'big girl pants" on and am ready…. I think. By the way, I love the statement under your name; it says alot!
Kathy
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- June 19, 2015 at 12:55 am
Congrats Mary! That is great news and thanks for sharing that! I start my treatment tomorrow so we shall see….. I finally put my 'big girl pants" on and am ready…. I think. By the way, I love the statement under your name; it says alot!
Kathy
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- June 16, 2015 at 10:19 pm
Kathy,
We have all had those days. Hopefully you don't have too many. Just remember that one of the contraindicators for interferon is depression so take care of yourself. That being said this is a good place to Rant…we understand, where many others may not.
Let give you some good news though, I am stage 3a too. I am now 5 years NED. I chose just to wait and watch. I still have all fingers and toes crossed, but I'm feeling pretty confident.
Good Luck!
Mary
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- June 16, 2015 at 10:19 pm
Kathy,
We have all had those days. Hopefully you don't have too many. Just remember that one of the contraindicators for interferon is depression so take care of yourself. That being said this is a good place to Rant…we understand, where many others may not.
Let give you some good news though, I am stage 3a too. I am now 5 years NED. I chose just to wait and watch. I still have all fingers and toes crossed, but I'm feeling pretty confident.
Good Luck!
Mary
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