brewgirl68

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!

Sorry you are in our club 🙁

I was dx'd in Jan. '15 with Stage 3c melanoma, unknown primary. To say this came at my out of the blue would be an understatement! On Christmas Eve 2014 I felt a lump in my armpit. Dismissed it as just something to keep an eye one – as a female, armput lumps are definitely something to keep track of due to breast cancer. Over the next couple of weeks I kept checking it, but Christmas/New Years/family stuff kept me from going to the doc. After all, nothing like cancer was going to happen to ME…I'm a healthy 45-year-young lady.

Fast forward to second week in Jan., finally call my doc. She sends me to a mammogram, all clear. Next step is a needle biopsy…then the 2 day wait turned into 4 days. The pathologist was surprised to find melanoma, so they repeated the tests 3 times. The whole time I'm assuming it's going to be lymphoma, and I do all sorts of research. Then BAM…the phone call that it's malignant melanoma. My exact words to my doc: "That impossible. I don't have any crazy skin lesions. Your tests must be wrong."

It's not common, and it makes it somewhat harder to treat…but the upside is that us MUP (melanoma of unknown primary) folks tend to have a better longterm outcome statistically. The theory is that our immune systems must have attacked a skin primary and wiped it out before it was a visual, so therefore our immune systems might be working in overdrive, which would help us when it reaches our lymph system.

I had a CLND, 5 of 14 nodes were positive with matting. Declined interferon, which was the only treatment available in Feb. '15. Didn't qualify for any clinical trials (wild type BRAF, resected tumor, unknown primary, etc…) I'm feeling great, doing the watch and wait protocol that I've modified for my own lifestyle reasons.

Very best wishes to you!

Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

I hope you are able to enjoy your retirement and not let this beast take over!

Very best wishes to you <3

Sheila

Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

I hope you are able to enjoy your retirement and not let this beast take over!

Very best wishes to you <3

Sheila

Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

I hope you are able to enjoy your retirement and not let this beast take over!

Very best wishes to you <3

Sheila

I am Stage 3c with an unknown primary – found a swollen axillary lymph node by chance. Had a CLND, 5 out of 14 nodes positive. Prior to dx, I never felt bad/sick/unusual and my blood work has always been totally normal. That's the case for a lot of us. Melanoma is a sneaky bastard.

I am Stage 3c with an unknown primary – found a swollen axillary lymph node by chance. Had a CLND, 5 out of 14 nodes positive. Prior to dx, I never felt bad/sick/unusual and my blood work has always been totally normal. That's the case for a lot of us. Melanoma is a sneaky bastard.

I am Stage 3c with an unknown primary – found a swollen axillary lymph node by chance. Had a CLND, 5 out of 14 nodes positive. Prior to dx, I never felt bad/sick/unusual and my blood work has always been totally normal. That's the case for a lot of us. Melanoma is a sneaky bastard.

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!

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!

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!

Actually, your doc did give you the options that are available at the moment within protocol. Outside of that, you may qualify for a clinical trial. If you are interested in participating you should check in with your doc and see how to proceed (my oncologist has a department dedicated to helping patients navigate clinical trials). 

Best wishes!

Sheila

Actually, your doc did give you the options that are available at the moment within protocol. Outside of that, you may qualify for a clinical trial. If you are interested in participating you should check in with your doc and see how to proceed (my oncologist has a department dedicated to helping patients navigate clinical trials). 

Best wishes!

Sheila