› Forums › General Melanoma Community › From solitude to adoption into a large supportive community.
- This topic has 16 replies, 5 voices, and was last updated 12 years, 7 months ago by
JerryfromFauq.
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- September 18, 2011 at 11:11 pm
Aloha everyone.
Aloha everyone.
My name is Bob, and I was diagnosed with MM back in March of this year. Had a wide excision on the neck to remove what I have been told was a stage I. Another one popped up on upper left arm a couple weeks ago, and I will have to have it re-biopsied in a few weeks. Only reason for the delay is my derm. is out of town for a few weeks. I live on the big island of Hawaii, and have to fly to Oahu for treatments, and examinations. I have hundreds of the a- typical moles on me, and hardly a day passes now without changes appearing. You will have to forgive my lack of proper terminology on much of what is going on, but I am learning as fast as I can from all of your posts. I have already met some of you wonderful people. I feel lucky to have found you all , and this site. I don't feel so alone with this process now, and that is a blessing that is beyond any words I can type here. Instead of just sitting here and looking into the jungle for answers, I now pop in here every day to educate myself further, and in just a few days I have learned way more than I ever wanted to know about this disease. Thanks to you all for allowing me into this special place, and sharing your experiences.
Bob
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- September 18, 2011 at 11:44 pm
It does help knowing you aren't the only one out there dealing with all this.
Lots of people here have such great stories and everyone is sooooo supportive and informative!
Good luck with your next appt
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- September 19, 2011 at 12:48 am
Hopefully the next will will turn out just fine. I have had three or four a-typical moles, two Basel cell carcinomas. But as far as your surfing days being over, wow that's kind of harsh. I would think with the highest SPF and a wet suit (not very comfortable in Hawaii I know) you could still surf. I'd check that again, maybe he was just over reacting. My lifestyle changes have simply been to be sun safe.
Good Luck
Mary
stage 3
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- September 19, 2011 at 5:22 am
I am staying very positive for sure. I am starting to get use to the outine of flying every 12 weeks to Oahu to see my derm. I think his comments of "surfing days are over" was more of trying to make a serious point about a disease I had not much information about, until recently. I am for sure playing safe with the sun now. My days of ignorance on that are gone.
Thanks for your reply Mary…keep getting up for sure!
Bob
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- September 19, 2011 at 5:22 am
I am staying very positive for sure. I am starting to get use to the outine of flying every 12 weeks to Oahu to see my derm. I think his comments of "surfing days are over" was more of trying to make a serious point about a disease I had not much information about, until recently. I am for sure playing safe with the sun now. My days of ignorance on that are gone.
Thanks for your reply Mary…keep getting up for sure!
Bob
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- September 19, 2011 at 12:48 am
Hopefully the next will will turn out just fine. I have had three or four a-typical moles, two Basel cell carcinomas. But as far as your surfing days being over, wow that's kind of harsh. I would think with the highest SPF and a wet suit (not very comfortable in Hawaii I know) you could still surf. I'd check that again, maybe he was just over reacting. My lifestyle changes have simply been to be sun safe.
Good Luck
Mary
stage 3
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- September 19, 2011 at 7:37 am
Hi Bob,
I live in Hilo. You can view my profile. We are the only Kozuma in the book so if you want to talk story give me a call. I live with my mom so just ask for Kim and that you are from MPIP.
Yup, I fly in every 6 months for scans a Queen's. I have a great group of doctors there. Even though we don't have a "melanoma center" the docs are well connected with them. I underwent high dose IL-2 at Queen's last summer and now am NED since July '10.
I go back this Jan. for more scans.
Heck, they even invited me to my own tumor board!
We may be isolated but all the docs here came from somewhere else ex. NIH, John Wayne, MD Anderson etc. No worries. I asked pointed questions and feel comforatable with my team.
I drive to Dr. McElroy in Kona for my derm checks. It gives me a chance to go to Costco and Kona Brewery for lunch – liquid that is – lol.
Lemme know. I wasn't too impressed with the Hilo onc's so I didn't go for checks when I moved home. A back x-ray showed my progression to stage IV from 2A by happenstance. The Cancer Assn. will help with airfare as well as corporate angel. The pet scanning center also has a taxi service. The cancer assn. will also help with cab fare.
There is also Hawaii Bob that had mel on his toe. He is still rockin and rolling. He went to UCLA for treatment I think.
Best of luck,
Kim
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- September 19, 2011 at 10:20 am
Aloha Kim!
Thanks for all you have shared, and I really enjoyed you earlier this evening. Maybe one day we share a ride to the west side and yuk it up in Kona! I am so glad to hear you are pleased with the Docs you have found out here in the middle of the ocean. That makes me feel alot better about being out here in da acres! Costco sells my favorite pizzas too; like 3 for 12 bucks. Bring back a truckload of them!
Take good care,
A Hui hou!
Bob
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- September 19, 2011 at 10:20 am
Aloha Kim!
Thanks for all you have shared, and I really enjoyed you earlier this evening. Maybe one day we share a ride to the west side and yuk it up in Kona! I am so glad to hear you are pleased with the Docs you have found out here in the middle of the ocean. That makes me feel alot better about being out here in da acres! Costco sells my favorite pizzas too; like 3 for 12 bucks. Bring back a truckload of them!
Take good care,
A Hui hou!
Bob
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- September 19, 2011 at 7:37 am
Hi Bob,
I live in Hilo. You can view my profile. We are the only Kozuma in the book so if you want to talk story give me a call. I live with my mom so just ask for Kim and that you are from MPIP.
Yup, I fly in every 6 months for scans a Queen's. I have a great group of doctors there. Even though we don't have a "melanoma center" the docs are well connected with them. I underwent high dose IL-2 at Queen's last summer and now am NED since July '10.
I go back this Jan. for more scans.
Heck, they even invited me to my own tumor board!
We may be isolated but all the docs here came from somewhere else ex. NIH, John Wayne, MD Anderson etc. No worries. I asked pointed questions and feel comforatable with my team.
I drive to Dr. McElroy in Kona for my derm checks. It gives me a chance to go to Costco and Kona Brewery for lunch – liquid that is – lol.
Lemme know. I wasn't too impressed with the Hilo onc's so I didn't go for checks when I moved home. A back x-ray showed my progression to stage IV from 2A by happenstance. The Cancer Assn. will help with airfare as well as corporate angel. The pet scanning center also has a taxi service. The cancer assn. will also help with cab fare.
There is also Hawaii Bob that had mel on his toe. He is still rockin and rolling. He went to UCLA for treatment I think.
Best of luck,
Kim
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- September 19, 2011 at 12:49 pm
Bob, I tossed out my post to you since I have already give it to you in chat. and the emails I sent you. Gee, maybe I'm i the matachig making business now? Good luck and keep us informed. Yes, this is serious busines but humors is a part of really living.!
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- September 19, 2011 at 12:49 pm
Bob, I tossed out my post to you since I have already give it to you in chat. and the emails I sent you. Gee, maybe I'm i the matachig making business now? Good luck and keep us informed. Yes, this is serious busines but humors is a part of really living.!
Tagged: cutaneous melanoma
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