› Forums › General Melanoma Community › New here with questions!
- This topic has 24 replies, 6 voices, and was last updated 7 years, 4 months ago by
Natjocur.
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- December 2, 2016 at 1:11 am
Hi,
7 1/2 years ago I had a Stage 1b melanoma on my thigh which was removed with a negative sentinal node biopsy. In October I found an enlarged lymph node in my groin, same leg. Needle aspiration confirmed melanoma and I had the 10 nodes removed from there 3 weeks ago. The other 9 are apparently clear (waiting on 2nd pathology lab to double check) Brain mri and PET scans all fine.
Question 1: My local onc. insists this is stage 4 because it is a recurrence. I just returned from MDAnderson and both onc. there say 3b (regional recurrence). Local guy says yes, if it were the initial lesion with this positive node it would be 3b, but since it has metasticized it is automatically 4. Which is it?
Question 2: If it is 3b, and since I have no cancer at this time, MDA recommended Yervoy (what is FDA approved for this stage) or a clinical trial where I would get either Yervoy or Keytruda assigned to me. I would find out at the start which one it is. I could do the Yervoy in my town but would have to travel 2 hours for the trial. If I draw Yervoy, would it make sense to drop out and just have the same tx in my hometown? What do you all think about these 2 options? I want Keytruda, right? I homeschool my 10 year old with Down syndrome so pretty concerned about side effects getting me down and out but more concerned about recurrence and death!!
Question 3: I am scared to death and the anxiety about this is taking over my life. All 3 oncs say 50/50 chance of recurrence within 5 years with no further treatment. How do you all get past the fear? I keep telling myself "Today you do not have cancer"
Any and all advice and ENCOURAGEMENT AND HOPE is welcome! Thanks in advance.
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- December 2, 2016 at 4:13 am
The MD Anderson oncs are correct about your staging, 3b. Glad you got an opinion with melanoma specialists.
It's a totally personal decision about treatment. You could do Yervoy, some have had good success with it. You could do trial and hope for Keytruda, since it tends to have less toxicity. I did Yervoy in the adjuvant setting, had minimal side effects, but it came back, so I can't entirely vouch for it. You can read my profile for a breakdown of my side effects and what not.
Sorry you have to be thrown back into this crazy world of melanoma. Hope that whatever path you choose makes sure it keeps mel away for good this time!
All the best,
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- December 2, 2016 at 4:13 am
The MD Anderson oncs are correct about your staging, 3b. Glad you got an opinion with melanoma specialists.
It's a totally personal decision about treatment. You could do Yervoy, some have had good success with it. You could do trial and hope for Keytruda, since it tends to have less toxicity. I did Yervoy in the adjuvant setting, had minimal side effects, but it came back, so I can't entirely vouch for it. You can read my profile for a breakdown of my side effects and what not.
Sorry you have to be thrown back into this crazy world of melanoma. Hope that whatever path you choose makes sure it keeps mel away for good this time!
All the best,
-
- December 2, 2016 at 4:13 am
The MD Anderson oncs are correct about your staging, 3b. Glad you got an opinion with melanoma specialists.
It's a totally personal decision about treatment. You could do Yervoy, some have had good success with it. You could do trial and hope for Keytruda, since it tends to have less toxicity. I did Yervoy in the adjuvant setting, had minimal side effects, but it came back, so I can't entirely vouch for it. You can read my profile for a breakdown of my side effects and what not.
Sorry you have to be thrown back into this crazy world of melanoma. Hope that whatever path you choose makes sure it keeps mel away for good this time!
All the best,
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- December 2, 2016 at 1:09 pm
Sorry you’re dealing with this crap again.
Is melanoma ever really gone with surgery? Even the thinnest earliest? I’m convinced once you have it it’s always there and it’s not a matter of if but when it comes back. Too many stories like this to be one-off’s.
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- December 2, 2016 at 1:09 pm
Sorry you’re dealing with this crap again.
Is melanoma ever really gone with surgery? Even the thinnest earliest? I’m convinced once you have it it’s always there and it’s not a matter of if but when it comes back. Too many stories like this to be one-off’s.
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- December 2, 2016 at 1:09 pm
Sorry you’re dealing with this crap again.
Is melanoma ever really gone with surgery? Even the thinnest earliest? I’m convinced once you have it it’s always there and it’s not a matter of if but when it comes back. Too many stories like this to be one-off’s.
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- December 2, 2016 at 2:10 pm
The anxiety is awful, Michelle, and i'm so sorry you're at that point. It will abate as time goes on – yes, I know that's not much help now, but it will. You'll get used to your new 3b status, make a decision about treatment, and continue teaching your child. Find things to make the time until that happens tolerable. Find a counselor, get some meds for the really rough patches, go outside lots, find good movies, anything that works for you as a distraction and help you gain perspective.
Think back to where melanoma treatment was 5 years ago – it's light years' different now. Be hopeful about the future.
Fen
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- December 2, 2016 at 2:10 pm
The anxiety is awful, Michelle, and i'm so sorry you're at that point. It will abate as time goes on – yes, I know that's not much help now, but it will. You'll get used to your new 3b status, make a decision about treatment, and continue teaching your child. Find things to make the time until that happens tolerable. Find a counselor, get some meds for the really rough patches, go outside lots, find good movies, anything that works for you as a distraction and help you gain perspective.
Think back to where melanoma treatment was 5 years ago – it's light years' different now. Be hopeful about the future.
Fen
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- December 2, 2016 at 2:10 pm
The anxiety is awful, Michelle, and i'm so sorry you're at that point. It will abate as time goes on – yes, I know that's not much help now, but it will. You'll get used to your new 3b status, make a decision about treatment, and continue teaching your child. Find things to make the time until that happens tolerable. Find a counselor, get some meds for the really rough patches, go outside lots, find good movies, anything that works for you as a distraction and help you gain perspective.
Think back to where melanoma treatment was 5 years ago – it's light years' different now. Be hopeful about the future.
Fen
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- December 3, 2016 at 1:51 am
Thank you -
- December 3, 2016 at 1:51 am
Thank you -
- December 3, 2016 at 1:51 am
Thank you -
- December 4, 2016 at 3:39 pm
I was dx'd at 3c, right axillary with 5 out of 14 lymph nodes positive, unknown primary. My dx came at me completely out of the blue. I had CLND (Feb. '15) and declined interferon, which was the only option at that time. I didn't qualify for any clinical trials (wild type BRAF, resected tumor, etc…) So my treatment plan is watch and wait.
I was absolutely overwhelmed with fear when I was first dx'd, but Fen is right…for most of us, the fears subsides. I have found great strength with researching the hell out of melanoma and knowing what options are out there if the beast decides to return to my world. Fen is right…melanoma treatment is light years' different now from even one year ago.
For watch and wait my oncologist wanted me to do skin checks every 3 months for 2 years, then every 6 months for the rest of my life; scans every 4 months for 3 years, then every 6 months for 2 years, then yearly for the rest of my life. I've opted to do skin checks every 6 months, and I have found that I just can't stand doing CT scans so frequently…the scanxiety drives me nuts plus I don't want the radiation. I will do the 4 month scans until Feb when I hit my 2 year mark, then I'm going to move to every 6 months for 2 more years, then I'll do yearly. I do very frequent skin checks at home, and I check my lymph nodes regularly. Some people feel much more secure with really frequent scans…it's just not for me.
I keep up with quickly-evolving melanoma research so I can feel prepared for a possible recurrance, but I decided that I need to live my life as I would have prior to my dx. I still do all the things I used to do, I just do them with sunscreen and wide-brimmed hats 🙂
If you are comfortable with your local doc, by all means stick with him/her; however, it's a bit of a red flag that there was an error with your staging…it seems that your local doc is not a mel specialist. I would *highly* recommend that you get in with a melanoma specialist.
Very best wishes to you!
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- December 4, 2016 at 3:39 pm
I was dx'd at 3c, right axillary with 5 out of 14 lymph nodes positive, unknown primary. My dx came at me completely out of the blue. I had CLND (Feb. '15) and declined interferon, which was the only option at that time. I didn't qualify for any clinical trials (wild type BRAF, resected tumor, etc…) So my treatment plan is watch and wait.
I was absolutely overwhelmed with fear when I was first dx'd, but Fen is right…for most of us, the fears subsides. I have found great strength with researching the hell out of melanoma and knowing what options are out there if the beast decides to return to my world. Fen is right…melanoma treatment is light years' different now from even one year ago.
For watch and wait my oncologist wanted me to do skin checks every 3 months for 2 years, then every 6 months for the rest of my life; scans every 4 months for 3 years, then every 6 months for 2 years, then yearly for the rest of my life. I've opted to do skin checks every 6 months, and I have found that I just can't stand doing CT scans so frequently…the scanxiety drives me nuts plus I don't want the radiation. I will do the 4 month scans until Feb when I hit my 2 year mark, then I'm going to move to every 6 months for 2 more years, then I'll do yearly. I do very frequent skin checks at home, and I check my lymph nodes regularly. Some people feel much more secure with really frequent scans…it's just not for me.
I keep up with quickly-evolving melanoma research so I can feel prepared for a possible recurrance, but I decided that I need to live my life as I would have prior to my dx. I still do all the things I used to do, I just do them with sunscreen and wide-brimmed hats 🙂
If you are comfortable with your local doc, by all means stick with him/her; however, it's a bit of a red flag that there was an error with your staging…it seems that your local doc is not a mel specialist. I would *highly* recommend that you get in with a melanoma specialist.
Very best wishes to you!
-
- December 4, 2016 at 3:39 pm
I was dx'd at 3c, right axillary with 5 out of 14 lymph nodes positive, unknown primary. My dx came at me completely out of the blue. I had CLND (Feb. '15) and declined interferon, which was the only option at that time. I didn't qualify for any clinical trials (wild type BRAF, resected tumor, etc…) So my treatment plan is watch and wait.
I was absolutely overwhelmed with fear when I was first dx'd, but Fen is right…for most of us, the fears subsides. I have found great strength with researching the hell out of melanoma and knowing what options are out there if the beast decides to return to my world. Fen is right…melanoma treatment is light years' different now from even one year ago.
For watch and wait my oncologist wanted me to do skin checks every 3 months for 2 years, then every 6 months for the rest of my life; scans every 4 months for 3 years, then every 6 months for 2 years, then yearly for the rest of my life. I've opted to do skin checks every 6 months, and I have found that I just can't stand doing CT scans so frequently…the scanxiety drives me nuts plus I don't want the radiation. I will do the 4 month scans until Feb when I hit my 2 year mark, then I'm going to move to every 6 months for 2 more years, then I'll do yearly. I do very frequent skin checks at home, and I check my lymph nodes regularly. Some people feel much more secure with really frequent scans…it's just not for me.
I keep up with quickly-evolving melanoma research so I can feel prepared for a possible recurrance, but I decided that I need to live my life as I would have prior to my dx. I still do all the things I used to do, I just do them with sunscreen and wide-brimmed hats 🙂
If you are comfortable with your local doc, by all means stick with him/her; however, it's a bit of a red flag that there was an error with your staging…it seems that your local doc is not a mel specialist. I would *highly* recommend that you get in with a melanoma specialist.
Very best wishes to you!
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- December 5, 2016 at 2:35 pm
Thank you -
- December 5, 2016 at 2:35 pm
Thank you -
- December 12, 2016 at 4:11 pm
Hi Michelle. I also agree with the 3B staging, that’s where I am. I’m on my second go round- they’ve never found a primary, I had 1 positive lymph node in my left armpit 6 years ago. Did interferon for 9 months at that time (didn’t last the full year due to side effects). New positive lymph node in same area removed in October, and started on Yervoy last month.
Over the last 6 years I was diligent about having things checked out, but had it in my head that it would likely come back- so I lived my life to the fullest. The fear was never a big thing for me. But this time around is different. I’m not scared, just frustrated with the side effects. -
- December 12, 2016 at 4:11 pm
Hi Michelle. I also agree with the 3B staging, that’s where I am. I’m on my second go round- they’ve never found a primary, I had 1 positive lymph node in my left armpit 6 years ago. Did interferon for 9 months at that time (didn’t last the full year due to side effects). New positive lymph node in same area removed in October, and started on Yervoy last month.
Over the last 6 years I was diligent about having things checked out, but had it in my head that it would likely come back- so I lived my life to the fullest. The fear was never a big thing for me. But this time around is different. I’m not scared, just frustrated with the side effects. -
- December 12, 2016 at 4:11 pm
Hi Michelle. I also agree with the 3B staging, that’s where I am. I’m on my second go round- they’ve never found a primary, I had 1 positive lymph node in my left armpit 6 years ago. Did interferon for 9 months at that time (didn’t last the full year due to side effects). New positive lymph node in same area removed in October, and started on Yervoy last month.
Over the last 6 years I was diligent about having things checked out, but had it in my head that it would likely come back- so I lived my life to the fullest. The fear was never a big thing for me. But this time around is different. I’m not scared, just frustrated with the side effects. -
- December 5, 2016 at 2:35 pm
Thank you
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