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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Carmon in NM's picture
Replies 4
Last reply 4/18/2011 - 6:47pm

I'm finally having surgery at UNM in Albuquerque tomorrow to remove my right adrenal gland and what is left of the tumor tissue after completing the clinical drug trial. Hopefully, with a little Grace this will be the end of treatment for a while and after six months of chemo I can enjoy the summer! Even though this will be the most serious surgery I've ever had, I'm looking forward to finally getting it done. They will be opening me down my mid-line so I have a six week recovery of doing NOTHING! My husband figures they will have to duct tape me to my recliner to keep me quiet. ;)

I had a pre-surgery brain MRI and full body PET and CT scans last Wednesday and I'll get the results today when I meet with my onc and surgeon. Hopefully it will remain good news with nothing new and that darned adrenal tumor too tiny to even show now! I'll be thinking of you all while I'm in the hospital and hoping everyone is well. I'll post when I can!

Carmon in NM - Stage 3b Sep 2008, Stage IV June 2010 with brain and adrenal mets.

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Charlie S's picture
Replies 4
Last reply 4/18/2011 - 5:28pm

Come one and come all to chat.  Stage I to Stage IV most welcome.  

All cyber drinks are free and frequent.

Bitch, whine or moan are welcome as are the magic and wisdom  of tomorrow.

Be there. You will be glad you did.

Tuesday, April 19, 7-9 EST

Charlie S

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awg's picture
Replies 4
Last reply 4/18/2011 - 1:02pm
Replies by: joy_, awg, Fen

Stage 3a Melanoma w/1 positive Superficial pelvic node, deep node was negative.

My plan consists of Superficial Node Dissection (open method) and 12months Interferon.

I am seeing studies and reports where the superficial pelvic lymph node dissection is being performed using robotic assistance via a small incision on the top of the upper thigh.

I am looking  for information on facilities that offer this method as well as form feedback from anyone who have had robotic assisted dissection.

I am also interested in hearing from open method pelvic dissection recipients on how the recovery went, lymph edema and the best method to manage the edema.

 

Thank you,

AWG

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Nad T's picture
Replies 5
Last reply 4/18/2011 - 7:32am

Oh man, am I on the main board?  Being a Melanma push I am now a stroke push.

Understand the symptons - Respoind.

My arms are purple.

Now can I have my son back?

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mrsmarilyn's picture
Replies 4
Last reply 4/17/2011 - 8:17pm

Hello Everyone.  My brother Gary going to SC in Nashville has been on the MEK/BRAF combo for about 2 months and is having frequent bouts of high fever and nausea.  He was on the Braf (GSK) initially and they moved him over to the combo - after the BRAF stopped working.  We were wondering if anyone else is having any similiar side effects, and how eveyone on this trial is doing.  On a good note-he has went from 7 spots - to only one stubborn one in the pelvic area.  Thanks and hope to hear from this oustanding group of brave people, we have grown to love and depend on.

Best regards,

MrsMarilyn

Sister of Gary Stage IV

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Erinmay22's picture
Replies 4
Last reply 4/18/2011 - 5:31pm

I am hoping to get in a braf trial (if they can ever finally get my tissue sampled...) and was curious what folks are experiencing for side effects?

I was confirmed stage 4 in march with mets to the lungs. Having brain MRI and ct scans done on Tuesday. Let the scanxiety begin!

My boss has been asking me if I will have any restrictions. I haven't really taken any time off of work thru all this, but find it harder and harder to concentrate lately at work. Plus I do a fair amount of traveling every now and then and worry that flying and not sleeping well isn't great for my immune system while on these treatments and drugs. When not traveling I am just at an office type job all day so it's not too hard on the body.

just curious how folks handle their jobs and melanoma stress! Somedays are easier than others!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Hi, i wanted to share this UTUBE video of Pulse Technique:

.http://www.youtube.com/watch?v=E44bC8V3Ebo

Helpful for healing and clearing energy

don't back up, don't back down

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ValinMtl's picture
Replies 6
Last reply 4/22/2011 - 11:23pm
Replies by: Jim in Denver, ValinMtl, dian in spokane, Anonymous

Hi Jim

I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial.  I have always appreciated your support and wise counsel.  Just to let you know, I'm thinking of you.  Val xx (2nd round of ipi/yervoy)

Live Laugh Love Nothing is worth more than this day!

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awg's picture
Replies 5
Last reply 4/22/2011 - 8:09pm
Replies by: awg, Anonymous, King

Diaganosed in April 2011.

Had surgical excison of site w/clean margins. Sne. Node mapping reveiled 1 or 4  pelvic nodes removed to be positive (superficial node, deep was neg). The plan is a suprficial node dissection (open extraction) on positive side w/ high dose Interferon infusion for 30 days and 3 day per week injection to follow.

My questions is has any had node dissection with robitic assistance vs open method, if so at what facility?

 

In my research the Robotic surgery looks like a much less invasive approach. I am not worried abot scars, but I am looking for a lower infection rate and faster recovery so I may begin Interferon sooner.

 

Thank you All and my prayers are with each and everyone!

 

 

 

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smatlock41's picture
Replies 4
Last reply 4/16/2011 - 4:29pm
Replies by: Janner, MichaelFL

I was just diagnosed with melanoma in-situ clark level 1 on my right cheek. The shave biopsy they sent was .5cm X .5cm. It said the cells were only on the epidermis. They have referred me to a plastic surgeon and said I didn't need to see an oncologist. Has anyone had this on their face and if so how much more did they have to take out. They said once they go back in that is usually all you will need to have done except getting checked every 6 months or so. I'm worried about the scarring and just wanted to hear others experiences. Thanks! 

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Terra's picture
Replies 3
Last reply 4/16/2011 - 7:24pm
Replies by: Terra, emilypen, sharmon

Hi, my husband just started a trial of P13 K and Mek inhibitor two weeks ago.  The rash has certainly started on his face but also some swelling - does anybody know if inhibitors might cause some swelling - I don't recall it being one of the possible side effects.

 

Thank-you,

Terra

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Hi everyone, I posted here a week ago about the lymphoscintigraphy (FYI I endured it, the peole were SO NICE, even let me bring my ipod to calm my nerves. Used no lidocaine. Stung like a bitch for about 5 secs, then it was over. 2 shots, pain in the ass, but not as strong as ME). The next day after that test I had surgery, wider excision for where the mole was on my chest. I was put to sleep and they took out a wide section and went deep (my mole was 3.8cm deep). They also did the biopsy under my arm of my lymph node.

Now one week later I am still healing. Like I said before, it's a pain in the ass, but not as bad as I had thought pain-wise. I can do this. Healing is going slow, though. I know it's only been a week, but sometimes feels like forever. Since I had the surgery on my upper mid chest, I've had to wear this compression bra ever since I got out of the OR. This huge incision on my chest hurts more than the smaller incision under my arm where my lymph node is, but I have a feeling it's going to get worse.

Got a call today from my surgeon's office. It wasn'y the surgeon, but someone (a nurse maybe?) that had my results for me. She said she didn't want me going all weekend without any results. Anyways, the chest area excision was clear, no cancer. But the lymph node under my arm had cancer in it. When my surgeon took out my lymph node, she said she could tell it was cancerous because it was darker than the ones around it. The person on the phone today said that my surgeon will want to do more surgery and take out more lymph nodes to biopsy, but she will talk to me more about that when I meet with her next week on Wednesday. I asked if they had a new stage for me, and she said no, the surgeon will discuss that with me next week. I'm currently a stage II.

I read somewhere on here that if you have cancer in your lymph node, then you're automatically upgraded to a stage III. Is that true?

Had anyone ever had to go back and do more lymph node biopsy? Did you have to have a drain? I didn't have one the first time but I want to prepare myself just incase I get one the second time.

After I meet with the surgeon, I have an appt with my oncologist later that day to discuss my path results. Because of the biopsy results this just about insures that I'll have to have some kind of chemo, right?

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Hawaii Bob's picture
Replies 2
Last reply 4/15/2011 - 8:20pm
Replies by: Carol Taylor, MichaelFL

Hi everybody.... I just returned to Hawaii from the Mainland where I had my 6 month check up at the Siteman Cancer Center, Washington University in St. Louis, MO....... Still holding NED at Stage IIA -- 2 years and 8 months out from initial treatment ...... When I was diagnosed in August 2008, it was hard, nigh impossible, to conceive being NED going on three years...... 

So doing the happy dance while praying for those who are battling active disease ......

Aloha,

Hawaii Bob

 

Stage IIA, 2.40mm Superficial Spreading Melanoma on the bottom of left foot 2nd toe, adjacent to the Great Toe; WLE amputation of the toe and SNB of one lymph node in the left inquinal nodal region negative for mets; mitosis "not observed in the dermal region" (on 2nd path report), Surgery performed at Siteman's Cancer Center, Washington University School of Medicine, St. Louis, MO

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mike_nj's picture
Replies 5
Last reply 4/17/2011 - 8:00pm

Closing in on my 7 year point after the stage 3B  diagnosis.  Yesterday's X-Ray of chest looks clear from report and next week I visit to UPMC for followup.  As far as I know I am NED.

Wanted to post to share some hope with my fellow patients as they await scans and X-Rays and other tests

Still taking my assortment of supplements.

All the best to all patients and caregivers

Mike from NJ

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killmel's picture
Replies 36
Last reply 10/28/2013 - 11:09am

Hi Everyone.

.

Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

Donna fromVermont. If you got mixed results on IPI or no results, it is important to share your experience so other  can anticipate possible realistic

outcomes on IPI.

 

Please share your experience with IPI to give hope & encouragement for those who will be embarking on IPI treatment.

Thank you for feedback.

Douglas

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