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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Hikeratheart's picture
Replies 7
Last reply 8/15/2015 - 1:04pm

 Hi everyone,

I have been reading the forum for a few months, it has helped me tremendously through my diagnosis.

I need help deciding on interferon.

Here's my story:

On May 21st, 2015, I had biopsies for two spots, one on my back, which was thin, and another more concerning on my right arm. I was diagnosed with melanoma at the end of May. I have 2 primaries. Stage 2b. 

Surgery on July 1st -   SNLN biopsy, negative for majestic melanoma.   ( yeah, happy dance)

Wide re-excision of my right arm, biopsy: melanoma in situ, margins widely free of involvement, negative for invasive mel.  Breslows 4.5 , Clarks level 5. The depth concerned me!

Wide re-excisional biopsy of skin on my back,  .4 mm. Clarks level 3

negative for residual, invasive and in situ melanoma.

My oncologist, Dr.  Robert Taylor in Milwaukee (Aurora health) has advised me that since I have 2 primaries,  I should (could) do interferon for 4 weeks (5 days) and then  48 weeks /3 days.  On Monday, 8/10, I am getting a second opinion  from another oncologist. 

 

Please advise me me on this. If I understand correctly, I am in the gray area?  Is interferon all that is available or offered at this stage, so that's why their advising it? This is a big decision for me. I am a healthy 60 yr old woman with 2 new grandkids.  I really want to do everything possible for my good health, but have learned that it's a controversial treatment. 

Thank you for any help you can offer.

 

Kathy  McC.

 

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cckma's picture
Replies 9
Last reply 8/10/2015 - 2:47pm
Replies by: Maureen038, cckma, Anonymous, Ed Williams, Janner

Six weeks ago a dark spot with pale brown edges appeared on my left big toe nail that covers about 35% of my total nail. I went to my doctor and he suggested that we wait a month and see if it moved at all with the growth of the toenail. After a month went by I didn't detect any movement of the blemish so I went back to the doctor and he set me up with a dermatologist. The dermatologist looked at it and thinks it's a hematoma but to be safe she scheduled me for a biopsy. Later that evening I compared close-up photos with a ruler from six weeks ago until now and I have determined that it has moved a little bit with the growth of the toenail. Should I keep the biopsy appointment ? Cancer runs rampant in my family and this blemish appeared for no reason at all. I almost never bruise, I am sure I didn't injure my toenail, but it is moving with the growth of the nail. It does have various shades of brown and black in it, and a straight vertical edge in the middle of the toenail that doesn't reach either the cuticle or the tip of the nail. Is this ridiculous to get a biopsy? I'm going to lose my nail in the process. Everything I have learned about this suggests that if the spot moves with the growth of the nail then it isn't melanoma, but is it gauranteed to be benign just because it moves outward as the nail grows ? The portions I can measure have moved, but I have no way to know if all of it is moving as it is large and irregularly shaped. Thank you for your input!

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Millykamp's picture
Replies 9
Last reply 8/8/2015 - 11:53am
Replies by: Anonymous, Janner, Linny, stars, Millykamp, Momofjake

Still learning a lot but still getting overwhelm.. I haven't seen the specialist yet.. So many questions.. 

 

I I do have a few that I am wondering.., who it being an early stage cancer. 

can body ache be part of the cancer? 

The area where the lymph node are located could it be tender at times to touch but not swollen? 

Can feeling tired all the time be part of it as well? 

 

I also want want to thank everyone for amazing support groups.  This place have really help me u durst and most and still learning 

Melissa 

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Momofjake's picture
Replies 16
Last reply 8/10/2015 - 1:22am

Hi, I have read for months but haven't posted much. 11 mo ago my then 17yr old son was diagnosed. Now stage 4. It's everywhere(not sure about brain). I think in a weird numb way we were used to each scan being worse than before. He is now on keytruda. He had his 3rd dose yesterday. He feels great and looks better. We see shrinking tumors on his skin. He really feels it is working. A month ago I really felt like I would lose him soon. It's a miracle for us. So, he is now 18 and never talks(some grunting and lots of ignoring)and of course in in able! He has had it in his spine for 4 months with tumors 2.7cm. He has almost no pain but with the keytruda working I don't want permanent spine damage! I finally got him to see the radiologist. He had a large dose of radiation on his lower spine plus his infusion of keytruda/zomata yesterday. He is in a lot of pain in his legs. Poor kid! Senior year: freckle on his head, swollen node behind ear, 8 plosives nodes and saliva gland. Biochemo, radiation, new spot, metastatic, scan, liver, break to graduate, grows again, lungs. Spine, bones. Femurs, muscles, skin, ribs...he does everything...diet, natural things, he plays every sport everyday, sees friends all the time, tells NO one he is sick, plans college but has been stuck w mom for the last year a ton(worst thing ever for a 18yr old boy), and now more radiation. I see the keytruda shrinking things and he will have scans mid sept. Hoping we finally have a scan that says things are moving in a better direction. It's been full time cancer for a year. Praying for a good college send off as he learns to take care of himself mostly and live the life of a boy his age!! He is treated at huntsman in Utah and is going to school just 30 mi. From home! 

Wondering about any spine mets, radiation there(went through his tummy), and always open to keytruda experiences! Been a year with a heavy heart as a mom, but also many blessings. You learn to live in the moment, what really matters and how to be grateful in any situation!

Thanks for enduring the novel here! I have been helped here many times. Prayers to all my friends fighting! Keep it up!

kerri--mom of Jake

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jahendry12's picture
Replies 14
Last reply 8/11/2015 - 6:25pm

Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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jahendry12's picture
Replies 2
Last reply 8/7/2015 - 8:34pm
Replies by: BrianP

Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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liberty04281's picture
Replies 5
Last reply 8/7/2015 - 2:52pm
Replies by: liberty04281, Scooby123

After I finished Yervoy treatment, my scan showed that most of my nodules in my lung shrank, but not totally. Two months after I had a scan, saw my oncologist. He said scan is stable, good news. Nothing new showed up, and nothing grew bigger,looks the same as last time. I was hoping
I wiill.be NED this time, but I am stable.I was a little.disappointed,but anyway I should be happy that it is stable.
What is opinion of you guys on the board who had treatment with Yervoy?
Thanks,
Liberty

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erin123's picture
Replies 6
Last reply 8/27/2015 - 11:24am
Replies by: AJHP, erin123, Janner, stars

Hi,

I am new to this site. I was just diagnosed with melanoma in June. I had one spot on my chest that was 0.42mm and Clark level II, and another on the bottom of my toe that was in situ. I've had wide excision done on both of them now. I used a tanning bed in March for about a month recommended to me for other medical reasons which I won't go into and now realize what a horrible idea that was. After a month or so I noticed several moles had changed drastically. Now I am noticing SEVERAL more that have changed. I can't get this off my mind and I'm so scared and can't stop thinking about it. I know that my lesions were detected very early, but since things keep changing I can't stop checking my skin. I need to know how to relax with this new thing in my life but I can't figure out how to. How often should I do a skin check? Is it possible that these tiny spots are nothing to worry about. Some are very tiny but irregularly shaped and colored. Is there anyone out there who can give me support? I went to a dermatologist who was very non-chalant about my other moles but went back to my doctor today and she said they had to go. I'm 26 years old and can't believe this is happening to me. I've been told I don't fit the typical profile for melanoma. Dark hair and eyes, light olive skin, not very many moles and it doesn't run in my family. Please help. I'm scared out of my mind....

Erin

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evieg's picture
Replies 8
Last reply 8/7/2015 - 7:48pm

Hi

I read in a past post that Melanoma is radioresistant .... So chances are Whole Brain radiation is not very effective.... My husband just was told he has 24 tumors in his brain... Going to start on Monday.

If you have any thought or input... It would be greatly appreciated.

God Bless all of you.

Evie

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Anonymous's picture
Anonymous
Replies 13
Last reply 8/9/2015 - 1:59am

Hi everyone just been to see my consultant for my scan Resuilts from completing ippi. I have had a good response 50% in reduction in all my tumours liver lungs and lymph nodes, so pleased. Will have scan in 4 weeks again no activity in brain so well pleased today. I know I have a long way to go but having a drink tonight. Plus I have been eating and juicing for the last 4 months but not sure if this plays a part or not. 

Just wanted to share this 

thank you for all your support. X

scooby123

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shelbug66's picture
Replies 6
Last reply 8/7/2015 - 8:00pm

I know for most here, my news is very small potatoes, but I wanted to share, as I thought it would help those that are at a lower stage like me (Stage 1B) and worried about the future.  I was originally diagnosed in October of 2010.  Yesterday I went in for another 6 month checkup, and was given a NED and the ok to stretch my appts out to once a year.  A small victory, but one I am very grateful for.

 

My thoughts and prayers go out to all that continue to battle this horrible disease, and for those families and friends of loved ones lost.

 

Shelley

Just keep swimming...Just keep swimming!!!!

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sweetiejs's picture
Replies 7
Last reply 8/7/2015 - 8:13pm

Stage 1 melanoma on arm. Original slice biopsy .45 mm....had surgery....doc removed 2 cm most places, and when the tissue biopsy came back, results showed 1.2 mm depth. Doc now wants to do a sentinel node biopsy, and reopen the incision to remove some more tissue in the couple places she did not get the full 2 cm.......general anesthesia...which i don't deal well with.....I don't believe in chemo or radiation treatments...i have seen far too many people suffer terribly for a little extra time at just being alive...this is not how i want to handle my life......so not sure if there is an upside to having this surgery done, and see several downsides....need to get the doc's opinion on the odds...which is a guess....want to make a reasonable and logical decision.....any thoughts out there?? 

bd111342

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heg50heg's picture
Replies 2
Last reply 8/6/2015 - 8:37am
Replies by: Janner, stars

Its been a while since I have had to ask questions on here as I hve been having good scans for the past 4 years. Have had several biopsies which have came back posative over last years but all have been negative.

My question to all is : Can you get a melanoma spot on the elbow as I have a rather unusual loooking spot that has popped out and looks kind of like the brown spots that I have had biopsied in the past only this new spot is puffed out a bit and looks a little jagged , but in the same token it does not look like my first melanoma which did in fact look like a large dark mole. So just wondering if a mel could pop out on an elbow like this.

Thanks Harold Grieshop  4 year styage 3 survivor

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DianaD's picture
Replies 6
Last reply 8/6/2015 - 12:59am

I will be having a biopsy of the two moles on my back on Monday, Aug. 10th, at the University of Chicago.  Dr. Farah Abdulla will be performing the biopsy. 

DianaD

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