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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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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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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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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Shelly in Switzerland's picture
Replies 3
Last reply 5/5/2011 - 7:27am

Everyday there is an improvement to my left side,  the sciatica has cleared away, lots of muscle waste.  My concern is really the right side of my face: it feels like it asleep,or numb.  What did Amy B. have?

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smatlock41's picture
5/1/2011
8:41am
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I had a place taken off my cheek a month ago  by a shave biopsy and 2 weeks later the biopsy results came back and then said it was Melanoma Insitu Clark Level 1 which said it was superficial and only on the outer layer of the epidermis.  I went and picked up my report and after looking at it was confused because it had the doctors name that reviewed it (dermapathologist) but my doctor had signed for him and they also mentioned on the report that I had a history of melanoma.  Why would they need to state that on the pathology report?  The first review from him stated Atypia and then the final review was melanoma Insitu.  Anyways, I requested my slides from the dermatologist office and picked them up before my appointment with the plastic surgeon at Vanderbilt this past Thursday.  After looking at my report he also thought it looked a little strange.  I told him that I had my slides and would like someone at Vanderbilt to review them and he said oh good so he sent them down while I was there.  He went over 2 options to take care of this which were.....if he did the excision he would take .5cm all the way around.  He also told me about Moh's which he said may be the better option for me since they check the tissue as they go and can make a smaller scar.  I told him that would probably be the option that I would go with.  On Friday I get a call from the Moh's people at Vanderbilt that he had referred me to saying they had received my pathology report and no where on there did it state I had melanoma just Atypia.  She said they were going to send the report back to the plastic surgeon that I saw on Thurday.  She said you may not have to have anything done.  I said well since he did a shave he left me with a hole in my skin which I would like to have corrected.  They told me that it would fill in but I don't think so.  We are going on 5 weeks and it hasn't yet. So now I'm waiting on the plastic surgeons office to call me tomorrow to let me know what they think.  My question is if he goes back in to fix this hole and pull the skin together so I have a line that would look much better couldn't he test a little bit of tissue again to make sure it comes back ok?  Has anyone every experienced this?  I'm just so confused and stressed out and don't know what to do.  I don't want to be left with a bigger scar if its not necessary.  Any replies would be greatly appreciated.  Thanks! 

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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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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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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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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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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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rbruce's picture
Replies 13
Last reply 9/28/2011 - 11:38am

Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr. Daud at UCSF the next day who is suggesting Carboplatin and Taxol in conjunction with Axitinib (A UCSF clinical trial).  Any thoughts, experiences, suggestions, ideas would be most welcome as I have to make a decision soon.  Thank you so much!    Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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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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Anonymous's picture
Anonymous
Replies 13
Last reply 5/4/2011 - 3:06am
May the remainder of her journey be as peaceful and pain free as possible.
 
From her Facebook page 13 hours ago:

Hello everyone. It's Amy's sister, Julie. Quick update...Amy has taken a turn for the worse. The past two days have been pretty rough on her. We want to thank everyone for their continued prayers. Visits are still welcome please just call and schedule with Heather, myself, or Dennis first. We love you all.

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Napa K's picture
Replies 6
Last reply 5/18/2011 - 3:37am

I visit often, and rarely post but would very much appreciate insight and feedback.  I am (as of later this morning) an 8 year survivor of stage IV melanoma.  Early on I was treated with bio chemo + 2 years of IL2 pulse maintenance and managed to remain disease free until 2009.  Since then I have been waging war against a relapse that has once again reared it's ugly head.  I have had surgeries and did 10 months of PLX and the question is "now what".  My relapse is very localized at this point with one deep lesion, high in my axilla, nearly at my neck level and thus far, my disease has behaved in a fairly slow growing pattern.  The lesion is judged to be resectable but tricky and I recently had surgery in that area. Of course the other obvious option is Ipi. The only hiccup with this is that I have had a tremendously difficult time with every systemic treatment thus far (chemo, IL2, PLX).  If there is a side effect, it seems to manage to find me and in great proportions and the thought of going down this road again scares the ----out of me.  That said, if any of you out there have experiences that were rough with bio chemo/IL2 but have been easier with Ipi, I could REALLY stand to hear from you right now!  I am a mom of two (9/10) that has missed the last two summers and we are all in desperate need of a few months with strong mom back in action and able to participate in a long planned and much needed family  trip.  In my best guess, this will not be the case if Ipi is our choice.  Please share any good Ipi experiences you may have and any other insight. Thanks much and be well!

Hope is the most powerful drug

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dewdads's picture
Replies 8
Last reply 6/11/2011 - 11:16am

I am trying to use this format to get and give information regarding the test drug Eisal E7080.  I took my first dose on 1/3/11. I also took an baseline PET/CAT and MRI on that day. At 28 days another CAT Scan showed the lesions had lost 1/2 of their volume.  Day before yesterday I took my second CAT under the E7080 protocal.  I think I am one of the first people to get this second scan.  I am very pleased to say that the SCAN showed that the size of the metstisis in my lungs have not increased since the second scan and there appear to be several fewer lesions, even though I had missed 4 weeks of the treatment.

I started with 24 meg  for 28 days and had my first CAT Scan  It showed the lesions had decreased but I  had to quit because the side effects I was experiencing were so bad that I could not endure them.   At that time I took my second CAT scan I went off the drug for 14 days and within 3 days I was starting to clear up some serious symptoms.  Wen I  resumed the medication at 20 meg  I was begining to repeat the symptoms within 3 days.  I was taken off for 10 days and at a third 4 week period went back on at a dosage of 14 meg.  While it has not been pleasant I can live with this dosage and the side effects I am experiencing.  These are mostly fatigue and unsteadiness.  I an experiencing muscIe and joint pain in my extremities.  My appetite remains this time.

I know that University of Colorado at Aurora is sponsoring E7080 trials.  I would like to make contact with people from this site and the other brave souls around the US who are involved with these tests.  I hope you all are experience the positive results I have had.

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