MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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MaryMary73's picture
Replies 5
Last reply 5/29/2011 - 12:04am

A good friend of mine has a weird mole on her right calf, just below the knee and just by looking at it, it is bigger than 6mm in diameter. It's light brown but has some blotchiness darker brown in it too (no black or red though). It almost looks like a scar. Out of the ABCDE's of melanoma, it has the ABCD characteristics but it's not as ugly as my superficial spreading melanoma was. Anyhow, I saw it for the first time today but she says she has had it for years and it hasn't changed. I asked her if she has showed it to her dermatologist and she said that he told her it was nothing to worry about. I asked her if it has ever bled. She said yes, every time she shaves her legs. She said that she did not tell her dermatologist about the bleeding. She is VERY light skinned, pale milky white to be exact. I told her that she should get it removed because only a biopsy would give her the all-clear.

Am I being paranoid or annoying? sad

The only real wisdom is knowing you know nothing -Socrates

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/29/2011 - 7:37pm
Replies by: ValinMtl, lhaley, Anonymous

Hi Val,

Thinking about you and hope IPI is working for you. Please post and let us know how you're doin.

Postive thoughts & hugs are going out to you!

Jan

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Jewel's picture
Replies 12
Last reply 5/29/2011 - 9:07pm

Thanks to all of you ahead of time for taking the time to reply.

My husband was diagnosed in Nov 2010 with Stage 3 melanoma. While he has remained NED since I wake up everyday with the fear that today is going to be the day it spreads.....it is so frustrating because you have so few choices at this stage.  Just need some encouragement.

 

Thanks

 

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Rendergirl's picture
Replies 7
Last reply 5/30/2011 - 2:26pm

My mom is worried about all the scans I'm getting. PET/CT, MRI, X-rays, etc... I told her the doctors wouldn't let me have all those scans if they didnt think it was needed. She's scared of them causing cancer... I already have cancer...lol. I told her I'm sure they weigh the benefits against the risks and at this point I need the scans.

Anyone know how many scans are a safe limit?

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Gene_S's picture
Replies 1
Last reply 5/31/2011 - 2:21am
Replies by: Nebr78
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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We got the awful news today that Don does not qualify for the GSK BRAF/MEK trial we had been waiting weeks with baited breath for. Even though he turned out to be positive for the mutation, the cancer has spread so rapidly that his liver function is not high enough to meet qualifications.

Doctor Lawrence admitted Don to the hospital on Wednesday to better manage his pain as well as get his testing done for the trial (we had been in the emergency room that morning because Don was having a new bout of pain in his lower right ribcage area that wasn't being controlled by his pain medications)...it looks like he'll be staying for at least a little while longer. The doctor is now recommending chemotherapy as a last ditch effort to slow down the wild growth and spread to attempt to get his liver function under better control with an eye to possibly get him into the Compassionate Use PLX4032 trial which will be opening in this area soon. He wants Don to start the Chemo Sunday morning. We will both be speaking with Dr. Lawrence in the morning about all the details.

I could *really* use some prayers/support/hope right now. Having a hard time tonight being able to absorb yet *another* bout of extraordinary bad luck.

Thanks to you all. You really are a Godsend!

Michelle, wife of Don, Stage IV 

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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gtown's picture
Replies 4
Last reply 5/29/2011 - 1:43pm

Hey what's up,

Just got the results of my sentinel node biopsy and everything came back clear, no evidence of cancer in the lymph nodes. Man I'm psyched, what a long week it was to wait. My head was going a mile a minute all week long and this was a hell of a way to start summer! WHEW! I was figuring with the mitotic rate so high( 7) it had to have gotten into the lymph nodes! WOW, I had just signed up for a 1/2 marathon about two weeks before the initial diagnosis and now I can't wait to train again Sunday. I want to thank everyone for their help in the last couple weeks, it can get real tough when you're by yourself   (I'm single) and you guys always took time to give me some feedback.

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Replies by: MariaH, gabsound, Janner

Hi,

I updated my profile just 2 days ago and haven't gotten around to posting. I found the high dose phase to be not as bad as I was told it might be. Some nights w fever, chills and body aches, some nausea but for the most part felt just fine during the day. Some fatigue near the end which felt like I had lead weights on both my legs. I was quite worried about being able to work so arranged my schedule so I worked only 1/2 days. Knowing I only had to be there for 4 hours, no matter how I felt ,was psychologically good for me. My labs did change quite a bit with WBC and platelets dropping and liver enzymes up to > 6 x normal. Probably the most annoying symptom for me was the dry mouth. This was even worse if I had to take Compazine for nausea. I would wake up at night and could barely move my tongue. Needles to say, I was drinking lots of fluids.

My first subcut injection was a whole different story! I felt just awful within 4 hours of giving it and didn't recover for a full 24 hours-had to call in sick which is so hard on everyone when a full day of patients is already booked (I'm a sonographer, I do pregnancy ultrasounds). Another compounding factor was the Friday before I started my Interferon treatments 1/2 of the staff at Nevada Cancer Institue was terminated due to financial difficulties! That included my Melanoma Dr and his experienced nurse :( I went into this thinking I had an experienced team and had to deal with who was left. Luckily Dr. Samlowski and his nurse relocated to another Las Vegas Cancer Center. What a relief it was to find them!! But, that took 5 weeks. I didn't know what to do about self injections. Based on my symptoms Dr. Samlowski didn't think there was a lot to be gained for making myself miserable for the next 11 months. So I stopped. Hopefully that month will protect me!

So, not being on the medicine now for about 2-3 weeks I feel great. Went back to working full schedule. Got 2 biopsies done 1 week ago. Got a voice message from my PA to call her (the only other time she did that was to tell me about melanoma). One area was just fibrosis, but the second had a melanoma in situ. Good news, is the in situ part. She will do a wider excision in the next 2 weeks.

Now I'm wondering If I have that familial mole syndrome. I have lots of moles, freckles and of course sun damage from numerous sunburns growing up in sunny Las Vegas. I've probably had a dozen atypical moles removed before the melanoma as well as a basal cell cancer on upper back. Now I'm going to worry about my daughter who is 15. I scheduled an appointment for her and my husband for a skin check last time I went to Dermatology office,

The area that was the melanoma in situ was on the same leg as my melanoma and I showed that to numerous people-2 oncologists, the PA dermatologist, and the surgeon before I had my surgery in February. Again, no one was really impressed. The scary thing is I could point out many more moles that don't look that dissimilar to the one with the in situ! What to do about that? I did have my husband take pictures a couple months ago. I saw on Janner's page a link to some software to help you compare. Has anybody used it?

I have been following everyone's posts. Hang in there to those with current struggles and YEAH!!! to some good news!! I just love you all! Thanks for the words of encouragement, sharing your stories, the prayers and the knowledge! Just knowing you are all here is a real comfort!

 

Julie in Las Vegas

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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf

It brings me to ask...do I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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lovingwifedeb's picture
Replies 19
Last reply 5/31/2011 - 12:07pm

My husband passed early this morning, May, 27th 2011

I want to thank all who gave me support on this discussion board when I needed to vent during the year of Bob's diagnosis. I have a lot of anger to sort through as caregiver to one beloved husband, father, brother and son who fought this battle with heart. I don't know if I will ever be able to forgive melanoma for what it's done to our family and to the heartfelt stories I have read. If I do nothing else for the rest of my life it will be to tell my husband's story to anyone who will take the time to listen to me and be warned of it's horrible dangers.

Diagnosed Father's Day, 2010, Unknown Primary
Staged at 3
Changed to Stage 4 when 1 tumor was found in Brain in January, 2011

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acyr's picture
Replies 12
Last reply 5/30/2011 - 9:02pm

I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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killmel's picture
Replies 6
Last reply 5/28/2011 - 2:25pm

Just wondering how you are doing??? My prayers are with you both.

Doug

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carol b's picture
Replies 11
Last reply 5/28/2011 - 7:29pm

First of all I want to thank everyone for all of your prayers. You all walked beside me while i was taking my treatments. My goal was to get 10 bags and 10 bags i got. i should have skipped the last one but as my family says i am stubborn.  The side effects this time are minimal. Little itching and alot of confusion.My mental capabilities are only back to about half. I pray that isn't permanent. I go back on June 1 to see how many bags of the IL2 i can get. My goal is 5 because i don't want to over do it and not just be physically damaged but mentally as well. That scares me more than melanoma. After my 5th bag i didn't know who my husband was. The most wonderful man  in the whole world and i forgot him. Thats terrifying to me. I rather be dead than to no longer know him. So thats why im stopping at 5 bags. I have to do at least 15 bags  to stay on IL2 and so thats why im choosing 5 bags for my goal. I understand its only been 4 days since ive been home but my motor skills and my thinking are not what they should be, in my opinion. I have only 5 days left before i do it again. And im gonna need all the prayers i can muster to get thru this one. Thank you for walking this walk with me and even though you were not there thank you for holding my hand and praying with me. i know i got TONS of prayers this time because the walk was so much easier and peaceful. I just wanted to give you all an update and to thank you for praying for a stranger. May God be with you all as we walk thru this valley of death, , fearing no evil,, because we all know who is in control. But friends like you get me thru my day and for that i will say thank you again. May god bless you all and my prayers will not stop, i will continue to pray for you, The warriors and the caregivers.

carolb

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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dian in spokane's picture
Replies 10
Last reply 5/28/2011 - 5:43pm

I saw my oncologist yesterday and had pretty positive results for the scans I had on Monday. I am now over two years in remission, but for over a year of that there's been some medium SUV readings in my neck/throat area. The first time coincided with a bad lung scan, and all of it seemed related to a horrible bout of some flulike thing I had for weeks and weeks. That was sometime in January of 2010. Things have been better on all my scans since then, but there's always a little something lighting up in that area.

This scan, the SUV is actually lower, at 5.4  than the last scan (in Jan it was 6.1) but it has grown from 14 mm to 2 cm. They don't call this a mass or tumor, but refer to it as 'a fullness in the left tonsillar region which may be malignant'

So I'm going to see an ENT, maybe have a biopsy, maybe have a tonsillectomy, maybe neither..who knows. With my history I can't ignore the recommendation but neither my oncologist nor I really believe this to be melanoma. And no other signs of subQs or organ involvement, chest, pelvis, abdomen and extremeties all clear. 

Oh! and I convinced him that we can go out to 6 month scans! it will be nice not having to do all of that again for another 6 months. Now I just want them to deal with the throat thing in a timely manner so that I can be singing in time for festival season.

dian in spokane 

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