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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dawn dion's picture
Replies 12
Last reply 5/3/2011 - 7:01pm

So after a very loooong day at Moffitt ( I know I don't have to tell anyone how that goes)  and a day and a half of just flat out to busy to think, I finally have time to sit down and post about my scans on Thursday.   I had my first set of scans since starting the GSK BRAF/MEK trial -  while I am not NED yet :(  there was a 20+% shrinkage :) !   I WILL TAKE IT!   It made me very happy.    Thank you to all of you who posted your thoughts about my scanxiety, said prayers and gave me a patron saint to pray to (Mike :) ) - It helped me tremendously - especially when I was  sitting and waiting for her to come in and discuss the results.  Felt like I was two seconds from a massive heart attack - and she wonders why I have days when I need a anxiety pill.  Just wanted to share the news and again Thanks to everyone. 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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boot2aboot's picture
Replies 13
Last reply 5/3/2011 - 5:25pm

 

wanted to update everyone...i got my axillary lymphadenectomy on thursday...dr said my tumor was around 4cm...she said there was only the one tumor and she got good clean margins...my surgery lasted longer than expected, but i am told by others this is a good sign because it means they kept looking but didn't find any new cancer tissue?...won't have path results back on tumor until i go get my drainage tube out may 3rd...i am not too sore unless i move my arm a certain way then yow-wee! feels like i am ripping something out...

boots

don't back up, don't back down

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Carmon in NM's picture
Replies 25
Last reply 5/3/2011 - 2:53pm

My husband and I got down to Albuquerque this morning expecting to do the whole round of pre-surgical exams, tests and interviews. Instead, we got my medical and surgical oncs coming in to do the doctor version of the Good News Happy Dance!!! The brain MRI and PET/CT scans done on the 13th say,.."No evidence of metastatic disease." !!! Everything is completely clear on both the brain MRI and the full body scans...even the little oddball things they were watching are gone.

I am a complete responder to the clinical trial I did combining carboplatin, paclitaxel and temodar. The adrenal tumor has completely disappeared and the oncs agreed that the risks of a complicated and difficult surgery to remove a tiny bit of inactive tissue were not worth the possible benefits. Instead they are suggesting a round of radiation at the adrenal site to improve my recurrance odds as well as a reduced dose of profilactic whole brain radiation. My medical onc is setting up a consulation for me with an oncology radiologist to discuss this and also with a neurologist when I expressed concern about adding another layer to the brain trauma I already deal with so that I can make a completely informed choice.

But for tonight, my husband and I are CELEBRATING! Thank you all so much for prayers and words of support - what an incredible group to share the entire curve of this disease with - Carmon in NM (worn out from dancing!)

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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Sherron's picture
Replies 3
Last reply 5/3/2011 - 10:11am
Replies by: Barb, Sherron

I will be walking the Melanoma Walk in memory of  myJim next Saturday, May 7th, 2011 at Bachman Lake in Dallas, Texas.  My daughter-in-law, Krissi, who has superficial spreading melanoma will be walking with me.   This is for Jim, and all of the Melanoma Warriors currently fighting their fight and all the Angels watching us.  Small contributions are welcome... it is under AIM...It might be under my name Sherron Clevenger.  I need to earn $50.00 to walk, or it maybe under Jim Clevenger...not sure about that....just sure that I am doing this!!

Take Care,

Sherron Clevenger, wife to Jim FOREVER

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jag's picture
Replies 14
Last reply 5/3/2011 - 9:03am

CT of Chest Abdomen Pelvis all Clear

MRI all clear

I feel like a little kid again getting excited by numbers going up!

Hang in there and Fight Fight Fight!

Insert Generic Inspirational Motto Here

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TracyLee's picture
Replies 9
Last reply 5/3/2011 - 5:44am

I've got two appointments in the next couple of weeks for a second opinion about having radiation for my scalp melanoma.

First appointment is at U of Penn in Philly with Dr. Schuchter. Second is at Johns Hopkins with Dr. Sharfman. Has anyone else consulted with either of them?

Anything SPECIFIC I should be asking at these consultations? I'm mailing my entire set of records ahead of the appointments for their review.

While I feel I should do radiation, my husband is opposed. Obviously it's ultimately my choice, but it would be helpful to be on the same page as far as treatment. This is all hard enough without also battling my husband!

My doctors feel it has migrated into my skull membrane (on top of the skull, not inside), and there is only so much they can do surgically. I have had five surgeries in the past year, on my scalp and neck.

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Eugenia's picture
Replies 7
Last reply 5/2/2011 - 7:43pm

I was diagnosed with malignant melanoma (stage 3c) 2 1/l2 years ago (still NED!!) and found great comfort and advice from members of this board.  I am back because my SIL went to her general practitioner a week ago with a lesion that had every aspect of the ABCDEs.  SIL says her gp kept commenting on how she was sure the lesion was "nothing" and would be surprised if it came back as abnormal, and told my SIL she was doing a shave biopsy. Lesion is on back of SIL's leg, so impossible to see what doc was doing, but a nurse asked the doc at one point if she had the right blade.  Last night, gp calls my SIL and says results are back it is melanoma and be in my office on Monday morning at 8:00 to do a punch biopsy.  SIL called me and I went right over.  She showed me the lesion and there is a definite circle where the biopsy was taken.  It looks to me like the same type of wound left after my punch biopsy years ago--like a straw was stuck through the top middle of the lesion.

I have been frantically trying to get caught up on what is current best practices with biopsies.  I told my SIL that the lesion needs to come off--completey with excision.  She said her doc told her that they would eventually take it off for sure, but needed to do the punch for depth.  I recommended to SIL that she go to the doc Monday morning, get a copy of the path report and run like hell.  I think she needs a surgical oncologist next and a wide local excision.  It scares me to have this doc mess with the lesion any more before it is taken off.  Am I off base?  Does she need the punch biopsy?

Thanks so much for your help with this!

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/2/2011 - 10:40am
Replies by: premedy, Lori C, EricNJill, FormerCaregiver, Anonymous

Hi Jill,

 

How are you & Eric doing???  You are in my prayers. Hang tough! God willing, it will get better for you both.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2011 - 5:32pm
Replies by: MichaelFL

Hi Everyone,

 

I am scheduled for surgery to remove a tumor in a few weeks.

 

Has anyone frozen their tumor & if so, how did you use your frozen tumor at a later date( ie genetic testing, vaccine, etc.)? Was there a costor fee for freezing the tumor & for storing it.

Thanks for your input.

 

Jan

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Jan in OC's picture
Replies 16
Last reply 5/1/2011 - 5:20pm

Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read.......

CT of Ab and Pelvis:  "interval worsening of hyperattenuating hepatic lesions.  In addition confluent gastrohepatic, peri celiac, and portacaval nodal densities appear larger.  New splenic lesions are seen.  Left lobe now 4.3 x 4.1 cm, was 3.8 x 4.4 cm.  Caudate lobe now 3.6 x 4.8 cm, was 15 x 19 mm.  Right iliac lymph node now 2 x 2.2 cm, was 17 x 19 mm.  Final Impression: Progression of hepatic metastases, and nodal metastases.  New splenic metastases".

CT of Chest:  "Interval enlargement of multiple thoracic lymph nodes.  interval enlargement of multiple , at least 8, soft tissue nodules within the thoracic chest wall with at least one new nodule see.  Interval increase in size and number now numbering in excess of 100 pulmonary parenchymal micro and macro nodules.  Focal point of peribronchovascular involvement is seen within the left upper lobe concerning lymphatic involvement.  Right paraesophageal lymph node now 16 x 15 mm, was 9 x 7 mm.  Right lateral chest wall nodule now 22 x 17 mm, was 15 x 14 mm.  Left lower lobe now 14 x 13 mm, was 8.3 x 8 mm".

"Multiple thoracic vertebral body lesions with compression fractures of T8 and T5 with patency of spinal canal.  Height loss of the T8 vertebral body associated with interval development of multiple lytic lesions within the T5, T6, T9 vertebral bodies.  Final impression: Interval increase of pulmonary nodal, chest wall metastases.  Multiple vertebral bone metastases with compression fractures of spinal canal"

Basically lots of big words to say he is getting worse and this nasty disease has now spread to his bones. All I gotta say is #$%&@#$%&*!!!

Doc is now worried that the Brain mets may be reappearing, so moving up the timeframe on the MRI.  Very few options offered to us right now. We are  feeling a wee bit depressed.  Just can't get any good news!  Waiting on MRI to figure out what we can do next.

Jan, wife to dirk

laughter is the best medicine

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kathywal53's picture
Replies 1
Last reply 5/1/2011 - 4:16pm
Replies by: MichaelFL

My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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Rendergirl's picture
Replies 3
Last reply 5/1/2011 - 3:00pm

Hi everyone,

I want to write here of my experiences so far because it is so helpful to those who are just going through it, and you all have helped me so much, but I am only a few days post-op and still healing. I will write more later, and/or try to answer questions for those who want to know my experience. But right now I do have another question.

As I said, I had surgery on Wednesday to remove all lymph nodes in my right arm. They sent me home with a drain, and a compression bra on. It's important to note that the compression bra has been on since my initial wide excision of my mole site on my upper chest a few weeks ago. But I don't know if they put a new one on me because of my chest incision, which is still healing, or if it has something to do with the lymph node surgery and keeping lymphadema at bay. I took a shower today and changed my dressings and my incision site under my arm looks good, and I took the compression bra off. I don't know if I need to put it back on or not. Simple question, I know... but I will do anything to keep lymphadema from happening. Anyone have any info on this??

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My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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shellebrownies's picture
Replies 15
Last reply 4/30/2011 - 7:17pm

We're about  4 weeks out from Don's biopsy/lymphectomy and this morning he got up and his right arm was swollen. He said he was a bit more sore than normal also. It's important to note that he is not yet receiving any treatment for the Melanoma because they are still staging him. (He goes for repeat PET on Friday 4/29 and his next Onco appt is Friday 5/6)

He just saw the surgeon last Friday because he was having on and off bouts of increased pain. Surgeon had said everything looked good, no sign of infection, and he removed the rest of the Steri Strips, which did seem to help with the pain. We thought everything was moving along fine.

We called the onco, who thought after talking with my husband that it is most likely Lymphedema and we should look into getting him a compression sleeve. The surgeon's office is getting back to us in the morning about it, but the surgeon didn't seem too concerned (not concerned enough to have him come back in).

My questions are these: How do we know if that's what it is? What are the common symptoms (other than the swelling)? What can we do to make it better/go away? Is he going to be stuck like this forever and will it affect other possible treatments in that area? Will it affect his PET scan on Friday if it's still swollen?

Any information anyone can give would be very much appreciated. Thank you!

 

Michelle, wife of Don, Stage IIIC (for now)

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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EmilyandMike's picture
Replies 4
Last reply 4/30/2011 - 5:36pm
Replies by: Tim--MRF, mommydog, Napa K

I was just wondering if anyone was attending the May 4 event in San Francisco.  My husband and I will be attending.- I look forward to meeting you if you are.    

http://www.melanoma.org/get-involved/wings-hope-san-francisco

Thanks

Emily

Our experience with melanoma: http://emandmichael.wordpress.com/

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