› Forums › General Melanoma Community › Looking for Support
- This topic has 54 replies, 11 voices, and was last updated 10 years, 4 months ago by
JerryfromFauq.
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- January 5, 2014 at 5:00 pm
Hi all-
After reading many posts and with encouragement from my husband, I have finally decided to register on this website, and participate. My husband is very active on this site, so here is my story. My husband was origionally diagnosed in February of 2011. At the time we were living a normal life. I was (and still am) a stay home mommy to 3 boys and 2 dogs. The initial diagnosis scared the crap out of both of us, but surgery seemed to take care of it. We moved to North Carolina from upstate NY to try to fix the financial pitfall we were in, but a month and a half after moving, melanoma reared its ugly head again. This time it had moved to a secondary lymph node. Primary lymph nodes were clear and the PET scan was also clear other than the one tumor. Here we are another 15 months later, and routine CT scans showed a thickness in the small bowel. I brought up the idea of my husbands diverticulitis as being a possible cause. I try to consider myself a silver lining type person, but I have to admit I am scared. I have 3 wonderful boys all at ages that desparately needing their daddy. Our oldest is 12 and quickly becoming a young man who needs his dad to help mold him. Our middle son is 11 and wants nothing more than to learn how to be a better athlete from his dad (my husband was a tri-sport athelete), and our little guy is 4 who wants nothing more than to use his daddy as his jungle gym. I try so hard to be the voice of optimism. My husbands family has a long line of cancer (breast, colon, tongue and neck), but all survivors. I want to belive that my husband is going to be another one of the line to be a survivor, but there is a small part of me that is just so scared that our luck is running out. We have talked about the "worst case", and I would probably move back to NY to be with family especially since I have the ability to obtain a job if I return (I haven't worked aside from being mommy since my oldest was born). I DO NOT want to have to return to NY, but feel comforted to have the safety net. More importantly, I just can't imagine living life without my husband. We met in 1994, and married in 1998. We have had a very typical marriage with it's ups and downs, but despite being together for almost 20 years, it just doesn't seem long enough! I guess, I just wanted to introduce myself to the forum, and get some support. I have read such amazing stories on this site, and am hoping to lean on many of you as I go through the roller coaster ride that is melanoma. Not many people out there understand this life that we all live and I just want to say how glad I am to have the support. I look forward to posting more and supporting y'all.
Megan
- Replies
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- January 5, 2014 at 6:00 pm
Welcome Megan – I am pretty new to the site as well. I have found that if you post as much information as you can about the current stage of the cancer, where the primary was on his body as well as if you have consulted with a melanoma specialist, you will receive responses withe much needed support & suggestions. Also, do you definitely know that the bowel thickness is related to the melanoma?
You are absolutely right, most people outside of the 'melanoma' circle don't understand how serious it can be & think it's only skin cancer. Hang in there. Does your husband post to this site or did he submit his story?
Julie
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- January 5, 2014 at 6:00 pm
Welcome Megan – I am pretty new to the site as well. I have found that if you post as much information as you can about the current stage of the cancer, where the primary was on his body as well as if you have consulted with a melanoma specialist, you will receive responses withe much needed support & suggestions. Also, do you definitely know that the bowel thickness is related to the melanoma?
You are absolutely right, most people outside of the 'melanoma' circle don't understand how serious it can be & think it's only skin cancer. Hang in there. Does your husband post to this site or did he submit his story?
Julie
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- January 5, 2014 at 7:09 pm
I post on this site – I try to keep my profile current as well. I suggested my wife start posting here as well so she could get support beyond myself. Sometimes (i.e., often) I really do not want to talk about this terrible disease… as most of on this site know, it is always in our thoughts to one extent or another. I personally find it easier to type about it than talk about it. It allows me to moderate myself :).
Kevin
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- January 5, 2014 at 10:30 pm
Thanks Kevin – I did happen to read your profile a few days ago. I also try to keep the profile I have set up related to my husband as current as possible. Like you, my husband does not like to talk about it at all. When I'm on the computer he constantly asks me what I'm doing….I think he knows I'm researching or talking to others on this site and other sites. I have learned that Melanoma is a lonely road. When someone says "I have lung cancer" or "I have breast cancer," the reaction is totally different than when you say "I have melanoma." Can't talk to many people about it because they don't understand. My husband doesn't want to know certain things so the burden is on me…which is ok. I'd rather have the stress on me so he can stay as healthy as possible.
Take care and stay positive. Megan – I know how you feel so if you ever want to chat, I can give you my email address.
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- January 5, 2014 at 10:30 pm
Thanks Kevin – I did happen to read your profile a few days ago. I also try to keep the profile I have set up related to my husband as current as possible. Like you, my husband does not like to talk about it at all. When I'm on the computer he constantly asks me what I'm doing….I think he knows I'm researching or talking to others on this site and other sites. I have learned that Melanoma is a lonely road. When someone says "I have lung cancer" or "I have breast cancer," the reaction is totally different than when you say "I have melanoma." Can't talk to many people about it because they don't understand. My husband doesn't want to know certain things so the burden is on me…which is ok. I'd rather have the stress on me so he can stay as healthy as possible.
Take care and stay positive. Megan – I know how you feel so if you ever want to chat, I can give you my email address.
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- January 6, 2014 at 2:28 am
I’d like to be able to chat, Julie! Thanks. It sounds like you are the researcher of the group. Kevin is in our scenario. I don’t follow statistics. I feel that they don’t factor the human element & I just can’t imagine life any other way. Kevin and I really have a nice yin/yang relationship that balances each other out. My email is in my profile. Feel free to drop me a note anytime! -
- January 6, 2014 at 2:28 am
I’d like to be able to chat, Julie! Thanks. It sounds like you are the researcher of the group. Kevin is in our scenario. I don’t follow statistics. I feel that they don’t factor the human element & I just can’t imagine life any other way. Kevin and I really have a nice yin/yang relationship that balances each other out. My email is in my profile. Feel free to drop me a note anytime! -
- January 6, 2014 at 2:28 am
I’d like to be able to chat, Julie! Thanks. It sounds like you are the researcher of the group. Kevin is in our scenario. I don’t follow statistics. I feel that they don’t factor the human element & I just can’t imagine life any other way. Kevin and I really have a nice yin/yang relationship that balances each other out. My email is in my profile. Feel free to drop me a note anytime! -
- January 5, 2014 at 10:30 pm
Thanks Kevin – I did happen to read your profile a few days ago. I also try to keep the profile I have set up related to my husband as current as possible. Like you, my husband does not like to talk about it at all. When I'm on the computer he constantly asks me what I'm doing….I think he knows I'm researching or talking to others on this site and other sites. I have learned that Melanoma is a lonely road. When someone says "I have lung cancer" or "I have breast cancer," the reaction is totally different than when you say "I have melanoma." Can't talk to many people about it because they don't understand. My husband doesn't want to know certain things so the burden is on me…which is ok. I'd rather have the stress on me so he can stay as healthy as possible.
Take care and stay positive. Megan – I know how you feel so if you ever want to chat, I can give you my email address.
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- January 5, 2014 at 7:09 pm
I post on this site – I try to keep my profile current as well. I suggested my wife start posting here as well so she could get support beyond myself. Sometimes (i.e., often) I really do not want to talk about this terrible disease… as most of on this site know, it is always in our thoughts to one extent or another. I personally find it easier to type about it than talk about it. It allows me to moderate myself :).
Kevin
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- January 5, 2014 at 7:09 pm
I post on this site – I try to keep my profile current as well. I suggested my wife start posting here as well so she could get support beyond myself. Sometimes (i.e., often) I really do not want to talk about this terrible disease… as most of on this site know, it is always in our thoughts to one extent or another. I personally find it easier to type about it than talk about it. It allows me to moderate myself :).
Kevin
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- January 5, 2014 at 7:38 pm
Thanks for the support, Julie. The other post is from my hubby! I don’t know much about the specifics other than it started on his left arm as a very large wart & ignored by most of his docs as nothing. I couldn’t tell you much more, but I know cancer, and I know survivors. His family has a crazy history of cancer, but I’m confident that he is going to be another success story. I can’t imagine any other outcome. Don’t think I can handle anything less than another survivor story! -
- January 5, 2014 at 7:38 pm
Thanks for the support, Julie. The other post is from my hubby! I don’t know much about the specifics other than it started on his left arm as a very large wart & ignored by most of his docs as nothing. I couldn’t tell you much more, but I know cancer, and I know survivors. His family has a crazy history of cancer, but I’m confident that he is going to be another success story. I can’t imagine any other outcome. Don’t think I can handle anything less than another survivor story! -
- January 5, 2014 at 7:38 pm
Thanks for the support, Julie. The other post is from my hubby! I don’t know much about the specifics other than it started on his left arm as a very large wart & ignored by most of his docs as nothing. I couldn’t tell you much more, but I know cancer, and I know survivors. His family has a crazy history of cancer, but I’m confident that he is going to be another success story. I can’t imagine any other outcome. Don’t think I can handle anything less than another survivor story!
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- January 5, 2014 at 6:00 pm
Welcome Megan – I am pretty new to the site as well. I have found that if you post as much information as you can about the current stage of the cancer, where the primary was on his body as well as if you have consulted with a melanoma specialist, you will receive responses withe much needed support & suggestions. Also, do you definitely know that the bowel thickness is related to the melanoma?
You are absolutely right, most people outside of the 'melanoma' circle don't understand how serious it can be & think it's only skin cancer. Hang in there. Does your husband post to this site or did he submit his story?
Julie
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- January 6, 2014 at 1:52 am
Hey Megan,
Glad you introduced yourself. The support from this board never ceases to amaze me.
I saw this article a couple weeks ago and I think you and Kevin might benefit from it.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Hang in there Megan. In many ways this struggle is as hard if not harder for the caregivers like you than it is for the patient. I know that has been true with my wonderful wife.
Brian
P.S. Where are you all in NC? I'm in Atlantic Beach.
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- January 6, 2014 at 1:52 am
Hey Megan,
Glad you introduced yourself. The support from this board never ceases to amaze me.
I saw this article a couple weeks ago and I think you and Kevin might benefit from it.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Hang in there Megan. In many ways this struggle is as hard if not harder for the caregivers like you than it is for the patient. I know that has been true with my wonderful wife.
Brian
P.S. Where are you all in NC? I'm in Atlantic Beach.
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- January 6, 2014 at 1:52 am
Hey Megan,
Glad you introduced yourself. The support from this board never ceases to amaze me.
I saw this article a couple weeks ago and I think you and Kevin might benefit from it.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
Hang in there Megan. In many ways this struggle is as hard if not harder for the caregivers like you than it is for the patient. I know that has been true with my wonderful wife.
Brian
P.S. Where are you all in NC? I'm in Atlantic Beach.
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- January 6, 2014 at 2:23 am
Thanks Brian! I don’t like admitting I’m scared & I am far from a quitter, but at the same time I get beyond overwhelmed with worry, fear, anxiety, etc. I truly feel this is a roller coaster from hell with the highs being able to function “normally”. I try to maintain normalcy for our kids, 2 of whom are old enough to tell when something is up & the little one is just wanting to play. I get that attitude is everything with this and appreciate the support to keep me going in my positive manor!We live in Mooresville (about 45 min north of Charlotte) & my husband sees Dr. Stewart at Wake Forest Baptist Medical Center. I’m so glad we have a melanoma specialist. I’m still convinced that God brought us to this area for this reason. We have a fighting chance here! Thanks again!
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- January 6, 2014 at 2:23 am
Thanks Brian! I don’t like admitting I’m scared & I am far from a quitter, but at the same time I get beyond overwhelmed with worry, fear, anxiety, etc. I truly feel this is a roller coaster from hell with the highs being able to function “normally”. I try to maintain normalcy for our kids, 2 of whom are old enough to tell when something is up & the little one is just wanting to play. I get that attitude is everything with this and appreciate the support to keep me going in my positive manor!We live in Mooresville (about 45 min north of Charlotte) & my husband sees Dr. Stewart at Wake Forest Baptist Medical Center. I’m so glad we have a melanoma specialist. I’m still convinced that God brought us to this area for this reason. We have a fighting chance here! Thanks again!
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- January 6, 2014 at 2:38 am
Hi Megan, I am not sure if this post will be helpful or not, but I guess I just wanted to offer a glimmer of hope should the worst happen. Let me start by saying that there are a ton of new treatments available that have the potential to turn this disease from fatal to just chronic. There is so much potential so do NOT give up hope. I too was incredibly optimistic as I watched my young husband battle the disease. Unfortunately, in his case, the disease was just too aggressive and there was nothing more we could do. Sadly, he passed away a few months back.
The reason I write is because I too am a mom to two young children–2 and 4 in my case– and thought the worst when I imagined his passing. I found it devastating to read all the stories of other widows and how awful their lives have been since the passing of their loved ones. However, while I'm still new to this, I will say that children are amazing in their abiltity to perservere. My kids are my life now and the primary reason I keep going–they are a constant reminder of my late husband, in the best way, and make this life which most would consider unbareable, stangely manageable. I would be lying if I told you this was easy, but it is doable. I was the girl who dropped all my friends for my husband, but they all rallied when John died. I have had constant support and have barely been alone for the last few months.
Your husband can absolutely beat this disease, but know that if the worst happens, you can and will find a way. Be thankful for your kids and the strength they do and will continue to give you. Please feel free to reach out if you'd like to talk more.
Best,
Donna
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- January 6, 2014 at 8:54 pm
Thank you for your kind words, Donna! I am praying that I never have to use the safety net of leaning on my parents. My biggest fear is probably my husbands as well. $$! I have been a stay home mom since my oldest was born in July of 2001. I have done odd jobs here and there ie, coach swimming, teach swim lessons, tutor and babysitting. I have not held a "real" job in over 12 years and even then, it was just a suplimental salary and didn't need benefits. Even with my husbands life insurance we figure I'd have to make a very descent salary in order to continue to live. That plus having to figure child care which we have never had to worry about. I don't want to burden him with these fears, and frankly I don't want to think about it myself. I know my boys will be my reason for living, I just hope and pray that they help Kevin focus on living rather than "not dying". Thank you again, and I look forward to talking with you more.
Megan
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- January 6, 2014 at 8:54 pm
Thank you for your kind words, Donna! I am praying that I never have to use the safety net of leaning on my parents. My biggest fear is probably my husbands as well. $$! I have been a stay home mom since my oldest was born in July of 2001. I have done odd jobs here and there ie, coach swimming, teach swim lessons, tutor and babysitting. I have not held a "real" job in over 12 years and even then, it was just a suplimental salary and didn't need benefits. Even with my husbands life insurance we figure I'd have to make a very descent salary in order to continue to live. That plus having to figure child care which we have never had to worry about. I don't want to burden him with these fears, and frankly I don't want to think about it myself. I know my boys will be my reason for living, I just hope and pray that they help Kevin focus on living rather than "not dying". Thank you again, and I look forward to talking with you more.
Megan
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- January 6, 2014 at 8:54 pm
Thank you for your kind words, Donna! I am praying that I never have to use the safety net of leaning on my parents. My biggest fear is probably my husbands as well. $$! I have been a stay home mom since my oldest was born in July of 2001. I have done odd jobs here and there ie, coach swimming, teach swim lessons, tutor and babysitting. I have not held a "real" job in over 12 years and even then, it was just a suplimental salary and didn't need benefits. Even with my husbands life insurance we figure I'd have to make a very descent salary in order to continue to live. That plus having to figure child care which we have never had to worry about. I don't want to burden him with these fears, and frankly I don't want to think about it myself. I know my boys will be my reason for living, I just hope and pray that they help Kevin focus on living rather than "not dying". Thank you again, and I look forward to talking with you more.
Megan
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- January 6, 2014 at 2:38 am
Hi Megan, I am not sure if this post will be helpful or not, but I guess I just wanted to offer a glimmer of hope should the worst happen. Let me start by saying that there are a ton of new treatments available that have the potential to turn this disease from fatal to just chronic. There is so much potential so do NOT give up hope. I too was incredibly optimistic as I watched my young husband battle the disease. Unfortunately, in his case, the disease was just too aggressive and there was nothing more we could do. Sadly, he passed away a few months back.
The reason I write is because I too am a mom to two young children–2 and 4 in my case– and thought the worst when I imagined his passing. I found it devastating to read all the stories of other widows and how awful their lives have been since the passing of their loved ones. However, while I'm still new to this, I will say that children are amazing in their abiltity to perservere. My kids are my life now and the primary reason I keep going–they are a constant reminder of my late husband, in the best way, and make this life which most would consider unbareable, stangely manageable. I would be lying if I told you this was easy, but it is doable. I was the girl who dropped all my friends for my husband, but they all rallied when John died. I have had constant support and have barely been alone for the last few months.
Your husband can absolutely beat this disease, but know that if the worst happens, you can and will find a way. Be thankful for your kids and the strength they do and will continue to give you. Please feel free to reach out if you'd like to talk more.
Best,
Donna
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- January 6, 2014 at 2:38 am
Hi Megan, I am not sure if this post will be helpful or not, but I guess I just wanted to offer a glimmer of hope should the worst happen. Let me start by saying that there are a ton of new treatments available that have the potential to turn this disease from fatal to just chronic. There is so much potential so do NOT give up hope. I too was incredibly optimistic as I watched my young husband battle the disease. Unfortunately, in his case, the disease was just too aggressive and there was nothing more we could do. Sadly, he passed away a few months back.
The reason I write is because I too am a mom to two young children–2 and 4 in my case– and thought the worst when I imagined his passing. I found it devastating to read all the stories of other widows and how awful their lives have been since the passing of their loved ones. However, while I'm still new to this, I will say that children are amazing in their abiltity to perservere. My kids are my life now and the primary reason I keep going–they are a constant reminder of my late husband, in the best way, and make this life which most would consider unbareable, stangely manageable. I would be lying if I told you this was easy, but it is doable. I was the girl who dropped all my friends for my husband, but they all rallied when John died. I have had constant support and have barely been alone for the last few months.
Your husband can absolutely beat this disease, but know that if the worst happens, you can and will find a way. Be thankful for your kids and the strength they do and will continue to give you. Please feel free to reach out if you'd like to talk more.
Best,
Donna
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- January 6, 2014 at 2:23 am
Thanks Brian! I don’t like admitting I’m scared & I am far from a quitter, but at the same time I get beyond overwhelmed with worry, fear, anxiety, etc. I truly feel this is a roller coaster from hell with the highs being able to function “normally”. I try to maintain normalcy for our kids, 2 of whom are old enough to tell when something is up & the little one is just wanting to play. I get that attitude is everything with this and appreciate the support to keep me going in my positive manor!We live in Mooresville (about 45 min north of Charlotte) & my husband sees Dr. Stewart at Wake Forest Baptist Medical Center. I’m so glad we have a melanoma specialist. I’m still convinced that God brought us to this area for this reason. We have a fighting chance here! Thanks again!
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- January 6, 2014 at 2:54 am
Thanks for sharing the link Brian.
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- January 6, 2014 at 2:54 am
Thanks for sharing the link Brian.
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- January 6, 2014 at 2:54 am
Thanks for sharing the link Brian.
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- January 6, 2014 at 5:45 pm
Brain, thanks for the link. It is a very good essay and contains a lot of excellent advice even for those of us who don't have cancer. Who among us would not benefit from acknowledging our own mortality and resolving to make better use of our remaining time and our passions? Good advice.
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- January 6, 2014 at 5:45 pm
Brain, thanks for the link. It is a very good essay and contains a lot of excellent advice even for those of us who don't have cancer. Who among us would not benefit from acknowledging our own mortality and resolving to make better use of our remaining time and our passions? Good advice.
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- January 6, 2014 at 5:45 pm
Brain, thanks for the link. It is a very good essay and contains a lot of excellent advice even for those of us who don't have cancer. Who among us would not benefit from acknowledging our own mortality and resolving to make better use of our remaining time and our passions? Good advice.
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- January 7, 2014 at 2:47 am
Thank you very much for posting this article. It really resonated with me. Especially the discussion regarding relationships. Currently waiting PET & CT scan results after positive node in SNB. Have lymph node dissection next week Jan 16. Not a fun time to say the least.
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- January 7, 2014 at 2:47 am
Thank you very much for posting this article. It really resonated with me. Especially the discussion regarding relationships. Currently waiting PET & CT scan results after positive node in SNB. Have lymph node dissection next week Jan 16. Not a fun time to say the least.
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- January 7, 2014 at 2:47 am
Thank you very much for posting this article. It really resonated with me. Especially the discussion regarding relationships. Currently waiting PET & CT scan results after positive node in SNB. Have lymph node dissection next week Jan 16. Not a fun time to say the least.
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- January 6, 2014 at 5:04 pm
Hi Megan,
Sorry to have to welcome you to this forum. If you're looking for support from others (patients and caregivers) who "know" what it's all about, and what you and Kevin are going through, I haven't found a better place. Also the knowledge I've gained about melanoma from this site has helped us tremendously.
Some of my story is similar to yours – my husband's melanoma was deep and not treated as early as it should have been. Fully excised, no adjuvant therapy. He opted to be in a vaccine trial which is over now, so we are in that dreadful "watch and wait" routine. No recurrence so far, but I know that doesn't mean much. In a moderate state of "scanxiety" as we approach the one-year check after the end of the clinical trial.
I've written a lot on my blog about my journey as the spouse of a melanoma patient. There's a tab called "Our melanoma story" if you want to skip all the other stuff I write about. Also I would be happy to exchange emails with you, and phone calls if you wish. Just contact me through my profile page and I'll get back to you pretty quickly.
Hang in there! As others have written, there is much optimism now in the melanoma treatment research field. Keep your chin up for your boys and for Kevin – and make sure you get what you need for yourself as well.
Best wishes,
Hazel
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- January 6, 2014 at 5:04 pm
Hi Megan,
Sorry to have to welcome you to this forum. If you're looking for support from others (patients and caregivers) who "know" what it's all about, and what you and Kevin are going through, I haven't found a better place. Also the knowledge I've gained about melanoma from this site has helped us tremendously.
Some of my story is similar to yours – my husband's melanoma was deep and not treated as early as it should have been. Fully excised, no adjuvant therapy. He opted to be in a vaccine trial which is over now, so we are in that dreadful "watch and wait" routine. No recurrence so far, but I know that doesn't mean much. In a moderate state of "scanxiety" as we approach the one-year check after the end of the clinical trial.
I've written a lot on my blog about my journey as the spouse of a melanoma patient. There's a tab called "Our melanoma story" if you want to skip all the other stuff I write about. Also I would be happy to exchange emails with you, and phone calls if you wish. Just contact me through my profile page and I'll get back to you pretty quickly.
Hang in there! As others have written, there is much optimism now in the melanoma treatment research field. Keep your chin up for your boys and for Kevin – and make sure you get what you need for yourself as well.
Best wishes,
Hazel
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- January 6, 2014 at 5:04 pm
Hi Megan,
Sorry to have to welcome you to this forum. If you're looking for support from others (patients and caregivers) who "know" what it's all about, and what you and Kevin are going through, I haven't found a better place. Also the knowledge I've gained about melanoma from this site has helped us tremendously.
Some of my story is similar to yours – my husband's melanoma was deep and not treated as early as it should have been. Fully excised, no adjuvant therapy. He opted to be in a vaccine trial which is over now, so we are in that dreadful "watch and wait" routine. No recurrence so far, but I know that doesn't mean much. In a moderate state of "scanxiety" as we approach the one-year check after the end of the clinical trial.
I've written a lot on my blog about my journey as the spouse of a melanoma patient. There's a tab called "Our melanoma story" if you want to skip all the other stuff I write about. Also I would be happy to exchange emails with you, and phone calls if you wish. Just contact me through my profile page and I'll get back to you pretty quickly.
Hang in there! As others have written, there is much optimism now in the melanoma treatment research field. Keep your chin up for your boys and for Kevin – and make sure you get what you need for yourself as well.
Best wishes,
Hazel
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- January 6, 2014 at 8:58 pm
I hope that the the vaccine has helped your husband, Hazel. My husband didn't qualify for that trial because his first staging was too high. I am encouraged by all the new treatments and trials out there currently. I am concerned about the financial implications about it all. We moved to North Carolina to try to make a better life for ourselves, dig out of debt and enjoy life, but now we are facing a financial pit of hell in the face, with just his income & he is the sick one! Extremely scary, but health insurance exists for a reason, and so do payment plans. I am going to remain optimistic and encourage my husband to be as well. I'll check out your blog after I've helped my kids with their homework tonight! Thanks for letting me know about it.
Megan
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- January 6, 2014 at 9:42 pm
Megan, I totally get where you are right now, it's scary!! Fighting melanoma is a very hard battle, that can be exhausting, mentally and physically challenging, financially difficult, and tough on the family unit! I am a stay at home Mom too, and my husband, Phil has been Stage 4 for 2 1/2 years now. There have been dark moments in our battle, in September 2011 his disease spread to his brain, we were beyond devastated! However, we picked ourselves up, got to MDAndersion, we live in upstate NY and were going to Dana Farber at the time. So, my husband went thru six rounds of biochemo, and the TIL trial and has been stable ever since. Phil lives a completely normal life, working, and enjoying our kids! Also, I agree with the others, kids are super resilient, much more than we ever thought! Our kids stayed back home, in our house and in their school, during our long trips to Houston, and my sister moved in to care for them. It really does take a village, but they did GREAT during our absences, and we were so proud of them!! And, they are stronger because of what we all have been thru, they are amazing. So, don't underestimate your kids, focus on creating good moments, cherish every day and hope for the Best, but know you will survive anything that happens, we all do! Your husband can fight melanoma, just explore your options and be willing to go anywhere you need to. Also, I get tons of support thru two facebook groups, Melanoma Caregiver Support Group, and BAMW. I am totally not a facebook person, just joined for these groups, but so glad I did. Also, Catherine Poole at Melanoma International Foundation has a caregivers support group. Please don't hesitate to contact me, I think I responded once to your husband early on, since we are in the Saratoga area, and at the time you lived up this way. All the Best and Take Good Care of Yourself, Valerie (Phil's wife)
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- January 6, 2014 at 9:42 pm
Megan, I totally get where you are right now, it's scary!! Fighting melanoma is a very hard battle, that can be exhausting, mentally and physically challenging, financially difficult, and tough on the family unit! I am a stay at home Mom too, and my husband, Phil has been Stage 4 for 2 1/2 years now. There have been dark moments in our battle, in September 2011 his disease spread to his brain, we were beyond devastated! However, we picked ourselves up, got to MDAndersion, we live in upstate NY and were going to Dana Farber at the time. So, my husband went thru six rounds of biochemo, and the TIL trial and has been stable ever since. Phil lives a completely normal life, working, and enjoying our kids! Also, I agree with the others, kids are super resilient, much more than we ever thought! Our kids stayed back home, in our house and in their school, during our long trips to Houston, and my sister moved in to care for them. It really does take a village, but they did GREAT during our absences, and we were so proud of them!! And, they are stronger because of what we all have been thru, they are amazing. So, don't underestimate your kids, focus on creating good moments, cherish every day and hope for the Best, but know you will survive anything that happens, we all do! Your husband can fight melanoma, just explore your options and be willing to go anywhere you need to. Also, I get tons of support thru two facebook groups, Melanoma Caregiver Support Group, and BAMW. I am totally not a facebook person, just joined for these groups, but so glad I did. Also, Catherine Poole at Melanoma International Foundation has a caregivers support group. Please don't hesitate to contact me, I think I responded once to your husband early on, since we are in the Saratoga area, and at the time you lived up this way. All the Best and Take Good Care of Yourself, Valerie (Phil's wife)
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- January 6, 2014 at 9:42 pm
Megan, I totally get where you are right now, it's scary!! Fighting melanoma is a very hard battle, that can be exhausting, mentally and physically challenging, financially difficult, and tough on the family unit! I am a stay at home Mom too, and my husband, Phil has been Stage 4 for 2 1/2 years now. There have been dark moments in our battle, in September 2011 his disease spread to his brain, we were beyond devastated! However, we picked ourselves up, got to MDAndersion, we live in upstate NY and were going to Dana Farber at the time. So, my husband went thru six rounds of biochemo, and the TIL trial and has been stable ever since. Phil lives a completely normal life, working, and enjoying our kids! Also, I agree with the others, kids are super resilient, much more than we ever thought! Our kids stayed back home, in our house and in their school, during our long trips to Houston, and my sister moved in to care for them. It really does take a village, but they did GREAT during our absences, and we were so proud of them!! And, they are stronger because of what we all have been thru, they are amazing. So, don't underestimate your kids, focus on creating good moments, cherish every day and hope for the Best, but know you will survive anything that happens, we all do! Your husband can fight melanoma, just explore your options and be willing to go anywhere you need to. Also, I get tons of support thru two facebook groups, Melanoma Caregiver Support Group, and BAMW. I am totally not a facebook person, just joined for these groups, but so glad I did. Also, Catherine Poole at Melanoma International Foundation has a caregivers support group. Please don't hesitate to contact me, I think I responded once to your husband early on, since we are in the Saratoga area, and at the time you lived up this way. All the Best and Take Good Care of Yourself, Valerie (Phil's wife)
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- January 6, 2014 at 8:58 pm
I hope that the the vaccine has helped your husband, Hazel. My husband didn't qualify for that trial because his first staging was too high. I am encouraged by all the new treatments and trials out there currently. I am concerned about the financial implications about it all. We moved to North Carolina to try to make a better life for ourselves, dig out of debt and enjoy life, but now we are facing a financial pit of hell in the face, with just his income & he is the sick one! Extremely scary, but health insurance exists for a reason, and so do payment plans. I am going to remain optimistic and encourage my husband to be as well. I'll check out your blog after I've helped my kids with their homework tonight! Thanks for letting me know about it.
Megan
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- January 6, 2014 at 8:58 pm
I hope that the the vaccine has helped your husband, Hazel. My husband didn't qualify for that trial because his first staging was too high. I am encouraged by all the new treatments and trials out there currently. I am concerned about the financial implications about it all. We moved to North Carolina to try to make a better life for ourselves, dig out of debt and enjoy life, but now we are facing a financial pit of hell in the face, with just his income & he is the sick one! Extremely scary, but health insurance exists for a reason, and so do payment plans. I am going to remain optimistic and encourage my husband to be as well. I'll check out your blog after I've helped my kids with their homework tonight! Thanks for letting me know about it.
Megan
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- January 7, 2014 at 12:26 pm
Brian, thanks for passing along my "Cancer Questions" article post" Hope your journey is going well.
Megan, there were a few PD-1 locations running a trial for use of Anti-PD-1 as an adjuvant usage for NED melamoma people. Dr Weber at Moffit was conduting one of the trils. I don't know if it is sill open or has openings. You might like to check this out.
Dr. Jeffrey Webber
H. Lee Moffitt Cancer Center &
Research Institute
12902 Magnolia Drive
Tampa, FL 33612
(813) 745-2007 -
- January 7, 2014 at 12:26 pm
Brian, thanks for passing along my "Cancer Questions" article post" Hope your journey is going well.
Megan, there were a few PD-1 locations running a trial for use of Anti-PD-1 as an adjuvant usage for NED melamoma people. Dr Weber at Moffit was conduting one of the trils. I don't know if it is sill open or has openings. You might like to check this out.
Dr. Jeffrey Webber
H. Lee Moffitt Cancer Center &
Research Institute
12902 Magnolia Drive
Tampa, FL 33612
(813) 745-2007 -
- January 7, 2014 at 12:26 pm
Brian, thanks for passing along my "Cancer Questions" article post" Hope your journey is going well.
Megan, there were a few PD-1 locations running a trial for use of Anti-PD-1 as an adjuvant usage for NED melamoma people. Dr Weber at Moffit was conduting one of the trils. I don't know if it is sill open or has openings. You might like to check this out.
Dr. Jeffrey Webber
H. Lee Moffitt Cancer Center &
Research Institute
12902 Magnolia Drive
Tampa, FL 33612
(813) 745-2007
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