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View Full Version : To Ladypepper, and anyone else with melanoma...


mcr285
06-24-2007, 09:16 PM
Hi. Please don't be offended by this, I'm just really concerned about people with melanoma, and how uninformed a lot of people are. My family was very uninformed and misinformed, and I hope to save other people from the same problems we now face! See, my dad has stage iv melanoma...

I've been reading here, looking for anything that might help my dad, and I keep finding posts from you concerning melanoma. First, Ladypepper, I want to say, I'm glad it sounds like you're feeling better, and getting back to normal. I also want to warn you to not relax too much in your "normal" life. Once you have melanoma, you can guarantee it WILL come back. Not too many people realize this, and by the time they do, it's usually too late. You sound like a nice person, and I don't want it to be too late for you, or anyone else here!!!

My dad had a level I melanoma removed just over seven years ago. It was close to being a level II. We were told if it didn't come back in five years, it probably wouldn't come back. We were told wrong. After seven years, my dad started feeling bad - sick - and this isn't a man who ever got sick! He was in great physical condition, ran regularly, played sports, never in his life drank alcohol, never in his life smoked or did drugs... anyway, he felt sick, finally went to the GP, got a referral to the cancer doc, got looked at for melanoma moles, and swollen lymph nodes... the cancer doc found nothing and pronounced my dad "still cancer free!" My dad still felt like he needed a PETscan to be sure, so at my dad's insistence, the cancer doc finally agreed to it. The PETscan revealed that not only had the melanoma come back, but it was WAY WORSE!!! It was all over his body. He has tumors in nearly all of his major organs, in his bones, and now in his brain. It's a horrible thing to watch my dad, who was always healthy and fit, slowly deteriorate due to this disease.

Melanoma is aggressive and fast moving and if you don't take it seriously, it will kill you. Please be sure to get regular yearly SCANS (at the very least) and stay on top of it. Yes, it will always be something hanging over your head to worry about for the rest of your life... but at least you might be the one who gets to determine how long that will be!

Ladypepper
06-26-2007, 09:10 AM
Hi there ~ first of all I am VERY sorry about your dad. I do know the pain of losing a father (not to melanoma) and no matter what your age, it isn't easy. I pray that your dad has as much of a pain free life as he can.

I agree there are a LOT of misconceptions about melanoma and the life of a person with melanoma. You are very right, you are NEVER cured and any doctor who says you are cured is wrong, dead wrong. You do need to be monitored for the rest of your life. People MUST be pro active about their own health and research what they are dealing with.

There are happy endings to melanoma though too. My own aunt was diagnosed with melanoma at least 25 years ago - probably more. She had a fairly good size lesion. There was no breslow or clarks that she can remember back then but her prognosis was very shaky. She is still alive and kicking and regularly gets her check ups and things biopsied. But she is still fine. I hope it stays that way. She is a little bit of a happy ending. :)

Thank you for your post ~ people do need to realize that melanoma kills. There is an attitude a lot of time that it is "just skin cancer". I am guilty of that. I didn't think it was that big of a deal either, but now I know.

But people will continue to tan and ignore the dangers. People will continue to go to tanning beds and the beach and instead of using sunblock, they will put lotions and oils to intensify the effects. It is scary to think of the effects they are intentionally inflicting on themselves.

Now that you have a history of melanoma in your family, I hope that you are also getting checked regularly and watching our skin. I wish you the best and sincerely hope that your dad is pain free for as long as possible. ((hugs))

76blazer
06-26-2007, 04:20 PM
Hi everyone....MCR285, I know what you mean about melanoma not being taken seriously....that's why I posted in the first place...I was just as guilty as the next one of not understanding the seriousness of this disease....It's been awhile since I posted, but, if you look through you will find a post called "a story about melanoma"....In the post I explain what happened to my 34 year old brother. He had stage I melanoma in Oct 2003. Wide area excision, and the all clear after that. Well, in Spetember 2006 he was again diagnosed with melanoma; only this time it was metasticized and it was throughout his body....he didn't have a single spot on his body (on the skin-visible) when he passed away 45 days after his second diagnosis.....His melanoma had spread to his lungs, liver, subcutaneous fatty tissue, gallbladder, spine and brain....Thankfully, he really only suffered for about 60 days before the Lord took him home....After seeing what he went through so quickly really made all of us open our eyes and take things seriously....We all have to be vigilant about this....People forget how important our skin is....People take it for granted that skin cancer can't kill....The problem is: IT DOES KILL.....It doesn't discriminate...After all-your skin is your biggest organ...It would seem that people would take it seriously-but, they don't.....Thanks for the post and good luck with you, Ladypepper....I know you've been through a lot....MCR285-your father and family remain in my prayers-so do you ladypepper....Take care and please keep us posted...

aimees71
06-26-2007, 08:27 PM
Hi everyone.

After reading these posts I'm now really scared. I was doing much better emotionally around my diagnosis of Melanoma (Breslow's 1.12). On Friday I had my tissue excission and sentinel nodes taken out for biopsy. My mobility is very limited, but I am doing so very much better than anyone anticipated! I do believe my biopsy will come back clean, and assuming that it does we are all feeling I am fine now. I will go see my dermatologist every 3 months, but that is the only follow up/preventative care my doctor has discussed (assuming my lymphnodes are clean). So, please tell me, what are other things I need to keep up on? I don't want to run from the sun, but after reading these posts I feel scared and hopeless again. Also, someone suggested always insinsting on punch biopsies rather than shave biopsies. Why?

mcr285
06-27-2007, 01:49 PM
Hi Everyone,
Thanks for the supportive words. Sorry for the negative tone of my original post here. It's just scary how many people just don't understand this disease... doctors included! Ladypepper, I hope you don't think I was trying to rain on your parade... you're absolutely right, sometimes melanoma doesn't come back. I hope happens that way for you! :) I do have a referral to go to a derm, and hopefully can get an appointment very soon!
76blazer, I think I may have actually read and commented on the post that you mentioned. I am truly sorry about the loss of your brother. I can't believe how similar so many stage III and IV melanoma stories are out there! I've heard story after story of people who had a small melanoma removed, and were given the all clear, only to find out a few years down the road, that they have it again, and it's everywhere. I blame crappy insurance for a lot of the problem because most won't pay for preventative care. My parents are STILL fighting with their insurance company over treatments for my dad! It's horrible! Ignorance is also to blame, which is why I'm trying to let more people know just how serious this disease really is.
Aimees71, as long as you are diligent with your regular check ups and insist on getting regular scans. PETscans, CTscans... ones to see INSIDE your body, because inspite of what you may read, melanoma doesn't always show itself outside your body or in your lymph nodes. Even if your biopsy comes back clean, I would ask for a scan now, just to be sure. And then one a year, I think is what's recommended ****I may be wrong and if anyone knows for sure, please correct me!!!**** Most importantly, if YOU feel like something is wrong (and I'm talking about from today, all the way up until your 105 years old!), don't let your doctor brush you off, INSIST that he take you seriously and perform the necessary tests. If my dad had listened to his CANCER doctor, and believed it when the CANCER doc declared him "all clear," my dad would be dead today. You don't have to live in fear, just be diligent in your check ups and scans.
Last, but not least... my dad is still fighting. We're not giving up on him! He is a very strong man, with a strong spirit. We have a very strong faith in the power of God, and I know He can perform miracles today, just as He did in Biblical times. Maybe, with enough prayers and faith, just maybe God would be willing to bless my Dad with a miracle. I'll let you know.... again, thanks for the support! Aimees71, please keep us updated! You are all in my prayers!

camille2000
06-28-2007, 04:06 AM
Hi Aimees. hope you are well. My dermatologist says I can still go into the sun. In South Africa it will be difficult to avoid all sun anyway. Just have to wear protection. I still struggle emotianally but have since spoken to many people with early melanoma. It does not always come back and lab tests have improved a lot in staging melanomas. My aunt is doing extremely well after 8 years (travelling and enjoying life). She also had melanoma on her foot and believe me in was never exposed as in Belgium you wear closed shoes most of the year. A south African melanoma survivor told me not to listen to all stories as we never have all facts and it can put you down. Hope you will enjoy scuba and hiking very soon. We have snow in South Africa which is rather unusual. I am freezing! Let me know how you are doing. I went onto the website you recommended and it is a great one. I also found the website of shannon shillings who had 6 melanomas of which 2 stage 2. As she is american perhaps you know the site... http://www.shadefoundation.org/shondas-story.php

Ladypepper
06-29-2007, 05:35 PM
[QUOTE=mcr285;3068379]Hi Everyone,
Thanks for the supportive words. Sorry for the negative tone of my original post here. It's just scary how many people just don't understand this disease... doctors included! Ladypepper, I hope you don't think I was trying to rain on your parade... you're absolutely right, sometimes melanoma doesn't come back. I hope happens that way for you! :) I do have a referral to go to a derm, and hopefully can get an appointment very soon!QUOTE]

Hi mcr285! Hey, no worries here - I don't feel any such way. :) I pray that your dad does well and keeps fighting for as long as possible.

Take care and keep informing people of the dangers! Not enough people know about it! ;)

aimees71
07-02-2007, 07:55 PM
Hi Camille!
So good to hear from you. I'm glad you are feeling better and have spoken with some people. That's great! It really can diffuse feelings of fear. And good news from your dermatologist and about your Aunt!!!! I'm recovering well from my surgery. My lymphnodes came back clean! :) My mobility is very affected, which has created fear in me again. But talking with family and friends has helped me get back to thinking more positively--of course after I've cried my tears.:(

I have always wanted to visit South Africa--I can't believe it has snowed there. It seems like a beautiful country. Since it's such a sunny place and you, of course, must get out and enjoy life :p here is a product you may be interested in. It's called SunGuard. It's a product you wash into your existing clothes that offers 30 SPF. It's approved by the Skin Cancer Foundation and you can and order it online. I just ordered some to try.

Take care Camille! I look forward to hearing from you soon.

camille2000
07-03-2007, 02:08 AM
Hello Aimees. GREAT NEWS!!! I think any surgery will affect mobility. They cut my back and after 3 weeks It is still pulling.:( Do they always check lymph nodes in the States? The weather is a little warmer now but evening are freezing and we go to bed with hot water bottles...How often do you have to see your dermatologist as from now? I am seeing him on the 16 with all the children and I suppose once every 6 months after that. Do you have children? Lets keep in touch and hope you'll be running soon! Thanks for the Sunguard. I have decided to buy a full swimming suit for my son of 7 I used it when he was a baby but now everyone will go to the beach well covered. My 20 year old loves to tan and is not so impressed:cool: .

Hi Camille!
So good to hear from you. I'm glad you are feeling better and have spoken with some people. That's great! It really can diffuse feelings of fear. And good news from your dermatologist and about your Aunt!!!! I'm recovering well from my surgery. My lymphnodes came back clean! :) My mobility is very affected, which has created fear in me again. But talking with family and friends has helped me get back to thinking more positively--of course after I've cried my tears.:(

I have always wanted to visit South Africa--I can't believe it has snowed there. It seems like a beautiful country. Since it's such a sunny place and you, of course, must get out and enjoy life :p here is a product you may be interested in. It's called SunGuard. It's a product you wash into your existing clothes that offers 30 SPF. It's approved by the Skin Cancer Foundation and you can and order it online. I just ordered some to try.

Take care Camille! I look forward to hearing from you soon.

aimees71
07-08-2007, 10:04 PM
Hi Camille!

So funny! I'm going to bed with ice packs on my feet because it is so hot here! I've been looking at the website you suggested (thanks) and at full suits. They don't look bad, but I am quite sure your 20-year-old feels differently. :)

In the States they check lymphnodes depending on your Breslow's thickness. I think anything over 1.01 in thickness warrants a SNB. It may be the same everywhere. Not sure? Do you know what your Breslow's was? I can't remember if you've already told me. I will now see my derm every 3 months for a year or two and then every six months for the rest of my life. It sounds like you are on a similar plan. How are all of your kids dealing with your diagnosis? And how do they feel about going to the derm regularly themselves? I don't have kids, but I've told my mother, father, and sister that they are at higher risk and need to see the derm regularly. My dad already does, but I'm a bit frustrated that my mom and sister don't seem too inspired to go...:(

I am so glad that you seem to be feeling better. I look forward to hearing about your upcoming visit to the derm.... I get my stitches out tomorrow! Yeah! And I have another SMALL excission of an "atypical" (not cancerous...yet) biopsy and a skin check on the 19th. Take care.....

camille2000
07-09-2007, 07:26 AM
Hi Aimees, Just went for my annual gynae check up and everything is fine but was should be routine is becoming scary. I thought what next...You are right about my girls full costume is out I will just be able to get away with that one for my son. They were very scared at first but when the results came as 100 % cure they seem to be forgetting the ordeal sooner than me. I have already sent them once for a check up but never went myself (how typical for moms...) My 16 year old has a mole that does not look too good but everything looks like melanoma now and I notice every little spot.:confused: Just hope the phobia will go away. Emotionally doing better but would like to forget and not think melanoma at the slightest headache. I suppose time will do the job. Seeing the dermatologist Monday and thereafter a few times a year. My Breslow was 0.5mm and you are correct they also do a SLN as from 1mm. What concerns me is that all articles you read say something different. I think one has to stop reading...Looking forward to a vacation in the mountains and hope to see snow. Let me know how you are doing.;) By the way when it is hot here I also take ice packs to bed (my husband thinks it is odd) but now I am taking a hot water bottle, hubby and my little boy.

Hi Camille!

So funny! I'm going to bed with ice packs on my feet because it is so hot here! I've been looking at the website you suggested (thanks) and at full suits. They don't look bad, but I am quite sure your 20-year-old feels differently. :)

In the States they check lymphnodes depending on your Breslow's thickness. I think anything over 1.01 in thickness warrants a SNB. It may be the same everywhere. Not sure? Do you know what your Breslow's was? I can't remember if you've already told me. I will now see my derm every 3 months for a year or two and then every six months for the rest of my life. It sounds like you are on a similar plan. How are all of your kids dealing with your diagnosis? And how do they feel about going to the derm regularly themselves? I don't have kids, but I've told my mother, father, and sister that they are at higher risk and need to see the derm regularly. My dad already does, but I'm a bit frustrated that my mom and sister don't seem too inspired to go...:(

I am so glad that you seem to be feeling better. I look forward to hearing about your upcoming visit to the derm.... I get my stitches out tomorrow! Yeah! And I have another SMALL excission of an "atypical" (not cancerous...yet) biopsy and a skin check on the 19th. Take care.....

Lynne45
07-09-2007, 05:42 PM
Hello, has anyone ever heard of a melanoma in situ coming back? I had one removed 6 years ago, and reading these posts is somewhat worrisome.