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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JoshF's picture
Replies 19
Last reply 4/16/2015 - 5:05pm

Ive got CT chest/neck today. Not feeling as confident about scans in past after 3rd surgery due to recurrence in cheek after combo of ipi and il-2. Send good vibes...I've got a major case of scanxiety!!!

Josh

Let's work for better treatments....for a cure!!!!

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Teej's picture
Replies 2
Last reply 4/16/2015 - 3:51pm
Replies by: momof4boys, Janner

Hi everyone,

I had WLE on my scalp for a 1.4 mm (Stage Ib) melanoma back in November. There were no cancer cells in any of the margins, and nothing in the lymph nodes. After about a month, a black spot started to appear within the scar tissue from the excision site. It was removed and biopsied by the dermatologist and declared "residual melanoma". My surgeon and I don't quite buy it and think it was most likely a satellite. I had a PET scan done and everything was fine as both he and I suspected. If things are going on at the moment, it's probably on a microscopic level. I am 29 years old.

The site where the melanoma was excised (twice) itches like crazy. It used to itch really bad before it was excised. I've noticed it in the last few weeks it has started to feel as it did right before I had the melanoma excised. I know scar tissue can take some time for the body to adjust to; however, this is the same feeling as when I had the primary and it is a very distinct feeling.

Does anyone have any experience with the itching symptom of melanoma? Did it later turn into a recurrence?

Thanks,

Teej

Teej

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Anonymous's picture
Replies 4
Last reply 4/16/2015 - 3:30pm
Replies by: Janner, Eric, looptwelve

Hi everyone, 

Recently I was dignosed with melanoma in situ on my right side of back. Had the surgery and margins are all clear. 

Reading my patology report, clinical diagnosis " Atypical Melanocytic Nevous" 

i am not sure what that mens?  My doctor told me its in Situ, very early stage. 

I will ask about that during my next check up. 

I am 33 old white male. 

Thank you. 

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Kopetz's picture
Replies 4
Last reply 4/16/2015 - 12:38pm

Hi,

My dad has Malignant Melanoma for the past 7 month. He had a tumor removed from his head, radiation to the area, prescribed Tafinlar for 3.5 month but was taking off due to hard side effects, and now he started using Zelboraf. I am looking for someone who has been using this medication for a long time (maybe years) who can shed some light on his day to day life with this drug. How bad are the side effects.

Thank you and be well,

Tal

Tal

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looptwelve's picture
Replies 5
Last reply 4/16/2015 - 11:10am
Replies by: looptwelve, Jubes, Anonymous, Janner

Hello all,

New here, first diagnosed with in situ melanoma two weeks ago and had it immediately removed. I realize this is probably anxiety and paranoia manifesting itself, or complete coincidence, but since a few days after I got the diagnosis I've had some slight phlegm in my throat, and minor pains and tightness in my chest that is not localized to one spot. Minor pains tend to move to different parts of my chest. No cough present and no shortness of breath.

What I'd like to know is, what are the symptoms of a lung met if they're present?

I realize it's near impossible to get a lung met from an in situ tumor, but I'm going to see a second dermatologist to get a second opinion on some questionable moles that I don't feel like my first dermatologist paid enough attention to.

Sorry if this all sounds like newbie material, but I'm trying to figure out if I'm going crazy or if I have a reason for worry.devil

 

Andrew

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cheryl913's picture
Replies 10
Last reply 4/15/2015 - 11:23pm
Replies by: amelanomajourney, Anonymous, cheryl913, Linny, SABKLYN

I had a radical axillay lymph node dissection done after my wide incision that disfigured a tattooed portrait I have of my daughter on my right arm. I have been NED for over a year and no lymphedema. Now I'm wanting to have the tattoo fixed, but I am very nervous that it will cause lymphedema. At the same time I don't want to stay disfigured. Can anyone offer real life experience with this other than" it's not a good idea".

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luv4scjjt's picture
Replies 18
Last reply 4/15/2015 - 11:18pm

Hello everyone..I am new to MRF...New to melanoma as well..I was diagnosed in Jan about a week after my birthday. I went to the doc to check out a weird (ingrown hair like bump) on my leg. I nicked it with my razor while shaving and it didn't stop bleeding all day. next morning i called doc to have it looked at. What i thought was an ingrown hair (no color just skin colored bump) turned out to be nodular melanoma. Let the doctor appts begin.....Since then i have had the excision 4cm circumference...the skin graft...thigh was donor sight....and the sentinel lymph node biopsy..which oddly enough almost killed me..lol. I had an acute anaphylactic shock to the die and crashed on surgery table while they were doing the biopsy..Luckily i was still under anesthesia..I didn't feel a thing..lol. Well the results came back that my lymph node was clear..I was very happy and excited and thought that would be the end of doc apt's seen as i was clear. Then i had fallow up with my oncologist and my heart sank.. I still have to do the interferon treatments. Well not have too..... but strongly recommended. The size of my nodule was 4mm. So he is strongly recommending i go through with the treatments because with nodular melanoma i guess their is a high reoccurrence rate. I am very glad that i am only doing this as a precaution and not because it has spread but of course i am worried about treatment. I am 40 by the way. I am healthy (except for this) so i am sure i will be ok. But i am still worried about side effects...Does everyone get the side effects with interferon or is it some do some don't kind of thing? What are the real chances of it coming back if i do or don't do interferon? Of course i am scared and i hope you all can give me experienced honest answers. I don't need things sugar coated. Truth is best for me.....good and bad. What am i looking at?????

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2015 - 12:46pm
Replies by: Anonymous, Janner

I recently had a WLE and SLNB for stage 1a melanoma, right ankle, and received great results! Everything came back clear with no risdual melanoma from the excision site... But I am still sooooo paranoid. I spend hours every day/night examining all freckles/moles/new spots... Is this normal? 

MMWheart

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Jacqueh27's picture
Replies 3
Last reply 4/15/2015 - 11:36am

Well it's been a while since I have been on here. My daughter Jess had her PET scan again and it is still stable. The tumor went from 14 cm to 10 cm. They want her to have another PET in a month since the yervoy could still be working. If it hasn't shrunk enough he wants to put on Braf inhibitor. What are most commonly used and are the side effects bad? Will she lose her hair? She is finally feeling great, no pain, hasn't been on narcotics in over three weeks and is getting ready to start back to work Monday. Any info is welcomed! All other organs clear. 

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StephyD83's picture
Replies 3
Last reply 4/15/2015 - 9:43am
Replies by: StephyD83, Anonymous, SABKLYN

Hi All-

Thank you for the replys on my previous post. This thing seems to be getting bigger/darker as the days pass. My question is if this is a recurreance would I still only be stage 1?

 

Thanks!

Stephanie

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BillyF's picture
Replies 1
Last reply 4/15/2015 - 9:07am
Replies by: BillyF

I was diagnosed with Stage II Malignant Melanoma, Nodular type Breslow 5mm, Clark IV. I went through a one-year treatment with Intron A.  I was treated with interferons to delay the recurrence of malignant melanoma. My treatment consisted of a one-month high dose of 30 MIU five days a week, and 18 MIU three days a week for another 11 months. Like many others on interferon, I did suffer from side effects like headache, nausea, fatigue, mild depression, hair thinning, muscle ache , fever, and chills.

 

During that time I was terrified and I feel that, without support of my loved ones, I would become depressed.

What was your experience? How did you cope with your fears? I mean, did you stay positive throughout your treatment and how did you achieve that?

 

Billy

 

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Aundrea's picture
Replies 12
Last reply 4/15/2015 - 1:24am

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

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We met with the melanoma specialist yesterday.  My husband has ctage lllc resected with surgery almost 4 weeks ago.  Our dr is doing the clinical trial of nivolumab vs yervoy, 2 arm study.  Not sure which drug my husband will get.  He said this trial just started to see how it works for stage lllc.  Originally, our oncologist offered radiation and interferon and then refered to the melanoma specialist at Baylow Sammons texas oncology dallas.  After speaking with the melanoma onc yesterday, he felt interferon would not be best option and radiation would not either plu he could not perticipate in the trial if he took radiation.  The clinical trial drugs are approed by FDA for stage 4 melanoma and he said they are working on other forms of cancer as well.  Dr feels he will meet all criteria to enter trial and he signed all contract papers yesterday.  I hope this was a good choice, we are young with 2 children.  My husband works in the sun and uses sun screen but now, after being at his job for 6 years he feels he needs a job chnage in the midst of all this, im afraid for him to get a new job knowing he will start treatment soon and what boss would put up with that from a new employee.  His work is working with him now very well and all they want is him to be healed, and we hope maybe they will try to get him on other equipment in a cab to keep him out of the sun, they have worked well with keeping him out of as much sun as possible.  I feel we have a lot on our plate as all you you do on this forum.  Lastnight my husband started crying that he did't want to die.  I know you all fear that, I have hope though from reading this forum seeing all you stage 4 and 2, 5 and plus years NED.  I really need to keep talking him into getting on this forum because it has given me hope.  Any advice is much needed.  Have you been on these drugs?  What stage where you then, how long have you been NED?    

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Speedster's picture
Replies 3
Last reply 4/15/2015 - 12:53am
Replies by: Speedster, Aundrea

Have an ideas for support here in Austin as I'm just getting strarted having be diagnosed in January.  I am tying to naviagte the emotional side of things as I make the turn toward a clinical trial in Dallas at Baylor Sammons.  I'm Stage IIIc.  Ugh.

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Chris in Minnesota's picture
Replies 7
Last reply 4/15/2015 - 12:04am
Replies by: Chris in Minnesota, Toby0987, Bubbles, Anonymous

Here is a quick story of my melanoma.  I had a 8cm tumor in my left axilla that was unresectable due to it involving a major vein. My melanoma oncologist then started chemo that included avastin, abraxane, and carboplatin in hopes to shrink it enough to shrink off the vein and surgically remove it.  It worked and within 4 months of starting chemo I was being operated on.  They did a CLND of my left axilla. They removed the mass and the pathology of the mass showed no viable tumor but "many" of the 21 lymph nodes showing "treatment effect".  The doctor said that meant it appears that many were once infected with melanoma but the chemo showed a complete response.  That surgery was in August 2013.  In October 2015 I had a round of radiation in that area and have been on GM-CSF ever since then.  I have been having clean scans since as well.  My question is this.  Has anyone very had a "complete response" with traditional chemo like this and did they ever have a recurrence?   I have my scans coming up next weeks and am a little worried this time as I've had a cough for the last couple months that won't go away

thanks

Chris

 

 

 

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