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New to melanoma

happydad
Posts: 16
Joined: Jun 2009

I just discovered this discussion forum and already I am glad I did. Last night I asked my wife if I should be finding someone to talk with about my/our experience with melanoma. I just had surgery a month ago to remove a large melanoma from the back of my head. Still waiting to hear from the surgeon and oncologist about further treatment. They are suggesting the possibility of more surgery, radiation, and interferon. From what I am reading interferon does not sound appealing. I find myself wondering how it will affect my ability to work over the next year. I don't want to be a burden on my family. My youngest son has his own major medical issues that sometimes require travel out of state for care.

peggy01700
Posts: 8
Joined: Mar 2008

Hello. I am new to this site also (I tried it about a year ago, but dropped out). I cannot give you advice on interferon as my treatment was chemotherapy and immunotherapies (through clinical trials) but thought I would share my experiences so far. I was diagnosed in 2003 with melanoma, had wide excision and sentinal node biopsy and everything was clear. Cancer returned in 2007 as a large tumor in my hip/spine area. I have been in several clinical trials and this has kept the melanoma from spreading too much, although the hip tumor caused fractures and I am in a wheelchair. But otherwise, my doctors are surprised that I have been doing as well as I am as far as other metastases.

What I want to say is that I wish you all the best with your treatments. It is always good to have a supportive family. I have a great husband, 2 grown daughters, and one precious granddaughter. They give me hope.

There aren't many discussion boards re: melanoma, so I am hoping to keep positive by communicating with others with this disease.

It is not an easy road to travel, but I hope all goes well with you.

Peggy 01700

peggy2626
Posts: 1
Joined: Jun 2009

I just had a mole removed and was told it was superficial spreading melanoma. I couldn't have been more shocked. I am having more tissue excised but it hasn't been scheduled yet. I am fortunate to have caught this one early. But now I think I'm getting paranoid that I have other sites that haven't been detected. I have a sore on the back of my knee that I've had for a month that itches. I thought it was a chigger bite. I am 60 years old and love sports. I'm in the sun all the time, playing tennis and golf. I am afraid of my life changing so radically.

happydad
Posts: 16
Joined: Jun 2009

Thanks for your replies. I never dreamed that melanoma was such a pernicious condition. My wife and I met with the surgeon last week. He and the oncologist have recommended a re-excision of the area on my scalp so they can take more tissue from the area. I learned that the melanoma went deep below the dermis and that worries the doctors (and me.) After the next surgery I will be starting treatment with Interferon. From everything I have read, it doesn't sound like a picnic. I haven't become too worried yet about all of the other spots on my body, but many of my friends and family are now making appointments with dermatologists. The survivability statistics make me acutely aware of my mortality, but I am still hopeful.

jpamr5
Posts: 3
Joined: Mar 2008

Happydad...my thoughts and prayers are with you. I'm 52 y/o and also have become aware of my own mortality. I know what is probably going through your mind, but it's important to stay strong and hopeful. You can beat this!!

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hello, all,
I've been fighting this disease for over 21 months and have been through interferon, chemo, radiation and a couple of clinical trials. The interferon was He!! for me and the others weren't much easier. I do try to stay positive and always come here for support. This is a great group of people to talk to!
It's not easy dealing with this diagnosis, but there are people on these boards that can help in so many ways. I would be happy to talk to you about any of my procedures or just listen to your concerns and try to help. I've been blessed with so many friends here and I hope that you find this a positive place to come when you're feeling overwhelmed or just need to vent.
Stay strong and fight the best you can. They have come up with some new and promising treatments lately and that gives me hope. I have so much to live for and am willing to go the distance to see my kids grown and happy.Find your goals and keep fighting- it's sometimes hard, but always worth it!!
With much love,
Hollyberry

JR1949
Posts: 230
Joined: Jun 2009

Peggy, I see you had imunotherapies. My wife has just been diagnosed with stage 4 melanoma in her lymph nodes on her lungs after being cancer free for 18 years. We saw oncologist yesterday and he has prescribed what he described as immune based chemotherapy using interleukin2 or IL2. Is this the same thing you had or something different? We are new to chemotherapy. My wife's melanoma in 1991 only required surgery and I just had prostrate surgery in March 2009 and believe all cancer was removed. We just want to know how others handled this interleukin2.
I too am trying to stay positive by communicating with others about melanoma.
You are fotunate to have a supportive family. It means a lot, I know, because we also have a supportive family. My wife and I believe that you just have to keep a positive attitude and pray to God. I can testify that prayers are answered.

JR1949

peggy01700
Posts: 8
Joined: Mar 2008

JR1949, I am sorry to be replying after so much time. I didn't see your post, plus I haven't been on this site for awhile as it seemed that I had read all posts and there weren't very many new ones. Also, I wasn't feeling well for awhile. No, I didn't have immune-based chemotherapy. I had GC1008, a protein to block tumor growth and R4733 an enzyme blocker. From reading posts, it seems Interleuken2 is a very difficult drug to take, although I don't have any experience personally. The trials I was in were through the Cancer Institute of NJ.
I wish you and your wife all the best with whatever you pursue. It must be so difficult since you both have had cancer.
Peggy01700

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

DEar JR... sorry for taking so long to reply. As you read around this site you will see that Interferon is as known as "the hell known as Interferon" this is for good reason, it is one of the hardies most difficult chemotherapies known to any cancer patient. IL2 (Interlukin 2) in many cases is worse. However saying that it was easier for me ... you see I did 13 months of Interferon without any drugs to help out (I had all 19 of the 20 problems associated with Interferon the only one I didnt get was I kept all my hair). When I did the IL 2 I was forced to be doped up, so I was uncontious for most of the 7 days they administered the drug (I was on a trial that they also administer 3 other chemotherapies the same time as IL2). Because I was uncontious most of the time I cant tell you how bad it was however I will tell you that I think it was a lot worse for my wife, parents, beother and friends than it was for me.

If your wife hasnt started it yet(or are still on IL2) send me an email and I will give your wife as much help as I can, and my wife can give you all the help YOU need to help you handle it.

Good luck

jodi_girl_50
Posts: 2
Joined: Jul 2009

Hello, I was wondering how old you are. You sound like you might be younger like me im 28. I found out I had nodular melanoma last September right after I had my first child. I just wanted to tell you a little about interferon because Ive been on it since January of this year. It sucks!!!! It will affect your ability to work, but that depends on your job too and how supportive they are.

happydad
Posts: 16
Joined: Jun 2009

I guess I am old enough to be your father. I am in my mid-fifties. I just a had a re-excision this week. Not too fun. Recovery seemed to be harder than the first time around a couple months ago. Monday I see the surgeon to have the stitches removed and arrange to see the oncologist to get Interferon started. I am hoping they will let me squeeze a week of vacation in before the Interferon starts. Your experience pretty much echoes what others have said about the Interferon process. Not looking forward to it. My boss is supportive. I also teach a class for a University and classes will probably start before I am finished with the four weeks of intravenous. Makes me wonder how well I will handle being in front of a class when I may be feeling lousy. I hope to tough it out, but my boss told me I better have a plan B. My oldest son and his family were here over the holiday and my daughter-in-law filled our freezer with prepared meals to make it a little easier for my wife. I worry about being a burden on my family during this time. Hope you are able to enjoy your sweet new baby.

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

Dear Happydad,

Definately let everyone know what you are going through and that you may be hard to be around. I continued to work on Interferon and I was very hard to be around and I even let people know what I was going through and that I could be expected to be moody, however they sometimes forget. It sounds like you have a supportive boss and and supportive family but your boss is right you better have a plan B. The best advice I got (and I had to have a half dozen people tell it to me) was to take time to take care of myself.

PS make sure you tell your daughter in law that a side effect is that food can lose its taste (which doesn't really explain it.. for me all my favorite foods tasted like SH!^) my wife would prepare my favorite meals because I was losing so much weight and I just couldn't eat them... at first she was offended (she thought it was her cooking) then we went to FOGO De Chao (my favorite restaurant for special occasions) and I didn't like it either.

PS I had the same thought (at the time I was going through interferon) that I didn't want to be a Burden.... BUT TRUST ME they want to be involved in helping you and its as much a part of their mental well being to help you out... JUST LET THEM and be very thankful (this is hard to do on INTERFERON so remember to do it often).

ngxfer001
Posts: 3
Joined: Nov 2009

Hi

Can you provide me some advice on interferon, cause my girl friend has nodular melanoma stage 3, and we are decide if we should go for interferon or just observation.

She is thin, only 98 lbs and 168 cm tall.really need your advice.

happydad
Posts: 16
Joined: Jun 2009

I had stage 3 melanoma. I had two excisions. The doctors weren't sure if the tumor they removed was the primary tumor. They recommended Interferon as a follow-up to the surgery. My wife and I decided that I should do whatever I can to increase my survival statistics.

I have done the four weeks of intravenous and am now on the shots every other day. I have to admit that the IV experience was brutal. The shots aren't a picnic, but I think I have been spared some of the worst side effects. My biggest challenge is the "bone-weary fatigue" referred to in the literature. I am still able to go to work everyday. I even taught my classes during the IV, but it was a challenge.

I lost a lost of weight during the IV period. Your girlfriend doesn't have the weight to lose. However, I would encourage her to follow through with the Interferon. The sacrifice and discomfort are worth the hope of extending and enjoying life together.

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