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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 1
Last reply 12/22/2015 - 11:43am
Replies by: Janner

my skin feels like its ripping open on back by moles. is that a possible indicator of things to come. its 2 inches away from primary melanoma site?

Login or register to post replies.

jackister's picture
Replies 4
Last reply 12/21/2015 - 8:17pm
Replies by: Bubbles, jackister, Anonymous

Discovered two brain mets last week, after having been stage 3, unknown primary since January of this year.

 One met removed by surgery, other to be removed with rapidarc very shortly. Can not get trials because of very low risk stage 1 colon cancer surgically removed 2.5 years ago. I want to get the ipi/nivo combo that was approved in October, but I am getting static about that not being for adjuvant. My question is does anyone have a doctor in Southern California who has used this combo for adjuvant stage 4 and gotten it paid by Medicare. My plan would be to take the combo and then pembro and clearly the other way around would be just as good or better.

 

Jack

Login or register to post replies.

TomJ6299's picture
Replies 4
Last reply 12/21/2015 - 7:16pm

Hi everyone, just checking in, I was diagnosed on December 16th, 2011 with Choroidal Melanoma, enucleation of my right eye was performed on December 22nd, 2011. I have not been sick since. Just a message of hope for anyone who is newly diagnosed.  

I made a mistake after learning about the cancer,  I made an identity of myself as a cancer patient, and a survivor. I would say be careful of this, it gave me an excuse to play the victim role, which is not heathy. I am not a victim of anything, and I mean ANYTHING. I will not go into further detail about this part unless someone would like to talk to me about it.

My only other regret, (using the word regret for lack of a better term), would be rushing to a decision to remove the eye. The great team at Wills Eye Institute in Philadelphia Pa. were wonderful. They educated me on all of my options, and made it clear that the survival rate was basically the same whether removed the eye, or treated and killed the cancer with radiation.

My ocularist did a great job with the prosthetic eye, it looks great. The only problem is in 4 years, it has never ceased to annoy the hell out of me, Lol. I have tried every possible remedy, but it weeps and the discharge is slimey, then it hardens on the prothesis, making it painful to even blink. Hahaha, oh poor me right? I know, but I sometimes wonder, had I kept the real eye, it may have been better for me.

Anyway, all is well, and if you recently had an eye removed, don't worry, you mind will adjust your vision in a short while, and you will actually park your car all the way in the parking zone again.  And be careful at buffets, I knocked a few trays out of peoples hands because of my blind side, Haha it was classic to see their expressions !

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 12/19/2015 - 9:26am
Replies by: Ed Williams

Has anyone ever heard of the three drug being used together? Any thoughts on the idea?

Rebekah

Login or register to post replies.

Gene_S's picture
Replies 2
Last reply 12/20/2015 - 8:40am
Replies by: Anonymous

The Cancer Answers Global Summit is back by popular demand. We heard from many of you who did not have time to watch all of the video interviews in our recent series. To better accommodate your schedule, we have decided to provide FREE access to the entire summit again, starting today, through Sunday, December 20th..

This is your chance to catch up on videos you missed, watch your favorites again, and share these in-depth interviews with those you care about.

Click here for FREE access to The Cancer Answers Global Summit:
http://canceranswerssummit.com/replays/

Click on speaker photos below for topics and details: 
http://canceranswerssummit.com/schedule/

Join us this weekend as medical doctors, cancer experts, researchers and cancer survivors share: 

  • A variety of  integrative and alternative cancer therapies you have probably never heard about
  • Cancer tests that can warn you about the potential for cancer years before traditional test
  • Natural healing approaches to reverse disease or avoid it in the first place
  • The benefits of  plant-based  foods in healing disease and extending longevity
  • A variety of nutritional approaches to healing
  • Medicinal mushrooms as an ally in disease reversal and prevention
  • The power of a mind/body/spirit approach to healing from cancer and other diseases
  • How emotions play a major role in the onset of disease, and how to resolv e them
  • Successful cancer strategies and secrets from cancer survivors

These are the most in-depth interviews available to learn proven integrative, alternative and holistic approaches to cancer from medical doctors, cancer experts, researchers and cancer survivors. Most of the information you learn in this series can also be applied to a preventative approach to health, to avoid disease in the first place.

Click here for FREE access to The Cancer Answers Global Summit 
http://canceranswerssummit.com/replays/

Click on speaker photos below for topics and details                        
http://canceranswerssummit.com/schedule/

You won’t want to miss this last chance to view the entire Cancer Answers Global Summit for FREE this weekend. I look forward to joining you there.

 

To Your Greatest Health,
Jean Swann   
Founder and Host
The Cancer Answers Global Summit                                       

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Gordknight's picture
Replies 4
Last reply 12/22/2015 - 11:41am
Replies by: Janner, Gordknight, stars

A year ago I was diagnosed with a stage 1a melanoma on my neck.  Clarks 2 .22mm depth.  Havent had any other issues or recurrences from that site and I have been going to my derm for follow up.

However, there as always been a mole on my face that I never liked the look of and I mentioned it to my Derm.  My der is very skilled and he looked at it with his dermascope several times.  He said its definitely NOT a melanoma but promised that it was at least mild to moderately atypical but because of my profession (acting on stage and film) he said it would probably be best to leave it and watch it because he didnt want to risk scarring.

I was still not comfortable with it so he said I should see a good plastic surgeon if I really wanted it removed.  So a few days ago that is exactly what I did.  My pathology came back on my health account today (havent heard from the actual Doc yet about it) and I am really confused and concerned. Here is my pathology.  Maybe you all can help me figure out what it means.  I REALLY don't want to have more removed or risk scarring my face more.

PATHOLOGY:

A. SKIN, RIGHT CHEEK, EXCISIONAL SPECIMEN: ATYPICAL LENTIGINOUS JUNCTIONAL MELANOCYTIC PROLIFERATION ON SOLAR-DAMAGED SKIN WITH FOCAL BASALOID ATYPIA AND CALCIFICATION OF THE DERMIS.

THE ATYPIA INVOLVES PERIPHERAL INKED TISSUE MARGINS. SEE MICROSCOPIC EXAMINATION.

MICROSCOPIC EXAM:

A. Multiple step sections of skin extend to the superficial subcutaneous tissue. There is a background of solar elastosis. There is an atypical junctional proliferation of single and focally apparently nested melanocytes with scattered moderate cytologic atypia, bridging of rete ridges and patchy confluency. Focal basaloid atypia not involving a peripheral inked tissue margin is noted. There is central calcification of the dermis which causes partial disruption of the specimen. Deeper step sections show similar findings. An immunohistochemical stain is performed with appropriate controls.* Melan-A highlights the atypical junctional proliferation on solar-damaged skin with at least moderate atypia. It raises the possibility of a precursor lesion of a more aggressive lesion such as melanoma in situ. We cannot make a definitive diagnosis of melanoma in this specimen. The lesion involves peripheral inked tissue margins. If a complete re-excision is not done at this time, then very close clinical follow up at this site with additional sampling or re-excision of any residual clinical or recurrent lesion is recommended, as clinically indicated. I assume this specimen is representative of the entire clinical lesion/process. Clinical correlation is required. I would be happy to discuss this case at any time. 

 Dr. Zarandona (also a dermatopathologist) studied this case. The above is a consensus diagnosis.

Thanks in advance for advice!

Login or register to post replies.

vivian's picture
Replies 6
Last reply 12/20/2015 - 11:11pm
Replies by: Marianne quinn, vivian, BrianP, Anonymous

Well, I have my third solitary lung met in the lower left lobe.  This one developed with a few months of the second VATS wedge resection in two years.  (I am extremely fortunate that my melanoma has to date just shown up with solitary mets!)  This is the only thing that lit up on my PET/CT and my brain MRI was clean.  Because I had a bone marrow transplant in 2002, the docs want to avoid immunological treatments or other systemic things unless there is no other option.  Sooo...removal of that entire lobe is probably what will happen, but Dr. Wolchok, with whom I consult, mentioned Radiofrequency Ablation as well.  At first I thought it was like cyberknife, but it is not.  Has anyone had this?  I don't remember ever reading about it.  Thanks for any information or experiences you can share.

Happy, healthy, peaceful holidays to all!

Lear

Login or register to post replies.

Dear MPIP Community,

We've been contacted by Health Monitor Network, a publisher of guides on various health conditions. They are looking for a patient who has used or is using the newly FDA approved drug, Imlygic (T-VEC) and would like to share their experience. Additionally, they will be including a "patients tips" article in the guide. This will include people who have both Stage III and Stage IV melanoma. For this, they would need 2-4 quotes, along with a photo, which can be one of your own.

If you are interested in either of these opportunities, please contact Kathleen Engel, Project Editor, at KathleenE@healthmonitor.com to learn more. Thank you in advance for your assistance. 

Happy Holidays!

Shelby - MRF

Login or register to post replies.

Tim--MRF's picture
Replies 1
Last reply 12/21/2015 - 3:54pm
Replies by: Shelby - MRF

The FDA has just announced new proposed regulations that will have a major impact on the prevention of melanoma. These rulings are not final, and starting Monday December 21 the FDA is soliciting comment on the rulings. PLEASE PLAN TO LEAVE COMMENTS IN SUPPORT OF THIS!

The MRF and others have been working for years to have the FDA regulate tanning beds more strictly. We know that most melanomas in the US are related to UV exposure. In 2009 IARC, an arm of the World Health Organization, listed UV lamps as carcinogens in the same category as tobacco smoke.

The FDA held hearings in 2010 then nothing happened. About two years ago we heard that regulations were drafted but, by rule of Congress, had to be reviewed by the Office of Management and Budget for impact on the economy. This fall we secured a meeting with OMB and were joined by ACS, AAD, and others interested in this issue. We were able to convey the significance of these rules and the urgency of having them enacted.

They have now cleared that hurdle and await only public comment before becoming reality. The FDA is proposing two rulings. The first is about access and specifically requires:

--no one under 18 can use a tanning bed

--everyone using a tanning bed must sign a document that acknowledges they have been informed of the risks

--this document must be renewed every 6 months

The second rule requires owners of tanning salons have specific safety components in place, including prominent warning signs, emergency stop buttons, and better eyewear.

Please plan to leave your comments at regulations.gov starting Monday. The MRF will have sample language available on our website soon.

This is a great step forward, and an opportunity for the melanoma community to show the power of our voice.

Tim--MRF

 

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 12/20/2015 - 4:39pm
Replies by: nc1983

Anyone else taking supplements while on keytruda?  Consulted with a naturopath doc that specializes in cancer. Taking an integrated approach and inquiring about others experience with this approach. 

 

Login or register to post replies.

tschmith's picture
Replies 3
Last reply 12/18/2015 - 4:54pm
Replies by: Jubes, tschmith, jenny22

I woke up thinking of Artie this morning.  Many of us know what a gigantic fan he was of Star Wars so today is Artie Day for me.  Here's to you Artie!!!  You were so smart, brave and caring.  You responded to so many of us with knowledge, wisdom, and those endearing "dunnos".  I never met you in person, but you were my friend and I miss you.  He was willing to do what it takes to find the cure and be a part of this puzzle.  I believe Brian posted information about a scholarship fund being awarded in Artie's name and someone else donated the amount of a ticket to Star Wars to MRF in Artie's name.  Both are ways to honor him if you can.  But... telling your story and helping others is what Artie, Jerry, and many others who have now passed did and hopefully we will together contribute to the conquering of this terrible disease as well as all cancers.

Blessings to all of you...

Terrie

Login or register to post replies.

davekarrie's picture
Replies 2
Last reply 12/19/2015 - 3:17am
Replies by: davekarrie, jamieth29

Hello all, I am on the Taf/Mek combination since early November and it is working well, only have a few spots left.  I know this treatment usually works for about 10 months then Mel finds a new way around.  Here is my question, for any of those that have had durable responses to Taf/mek combination, did all your tumors disappear right away?  are you still on TAf/Mek? I am just wondering when to get off and get onto an immunotherapy. I was on Keutruda but had progression.  i know that they are bringing in immunotherapy with the taf/mek also.

Thanks for any insight!

 

Dave

Live life to the fullest and enjoy each day! #noonefightsalone

Login or register to post replies.

WallyE's picture
Replies 3
Last reply 12/19/2015 - 2:46am
Replies by: WallyE, Kim K

Hi all

I recently had a total gastrectomy and apart from finding features of an invasive metastatic malignant melanoma, they also identified tumour emboli in angiolymophatic spaces.

​My oncologist was not very clear on this except to say that it had something to do with the presence of tumour cells in my bloodstream raising ther possibilioty with further metastasis and as such further treatment would be required.

To this end she has ordered further evaluation of the removed tumour to establish BRAF mutations for possible enrolement on a clinical trial.

Can anyone out there please tell me what the complications of these tumour emboli are?

Kind regards

Wally

One day at a time.

Login or register to post replies.

mjanssentx's picture
Replies 5
Last reply 12/20/2015 - 4:40pm

Warriors - last night was my final shot of Interferon after nearly 150 total shots for the year.  Not looking to debate the efficacy of Interferon again but rather feeling good about making goals.  Last year Interferon, was the only real option for 3A patients and I was determined to get through the year.  And while we will never know for sure if Interferon helped keep me NED for the full 13 months since being diagnosed...but for me it was better than doing nothing.

So looking back over the past year, so much has changed with melanoma patients having so many more treatment options to help us in this fight.  We took great delight in watching Jimmy Carter keep going at 91...but then we all had to take a reality check watching Artie not make it to the Star Wars release tonight.

Best of luck to making your personal goals in 2016...Michel

Login or register to post replies.

Totally Blessed's picture
Replies 19
Last reply 12/21/2015 - 3:40pm

Hi. Like many here I've been lurking and reading since my husband was diagnosed. Here's his history so far...

Nodular Malignant Melanoma removed 11/9/2015

Both radial and vertical growth.

Lymphocytic response: non-brisk

No ulceration

No Mitotic rate

Clark's level: III/IV 

Breslow thickness: 1.4 mm

As mentioned above he had the tumor removed  11/9/15 by our primary Doctor.  Our Doctor sent him to a dermatologist after receiving the results.  The Dermatologist said he was referring my husband to the Cancer Center in Ann Arbor, Mi.  We had the Ann Arbor apt last week and found out yesterday his WLE and sentinel lymph node biopsy is scheduled for February 11th. 

Here's my question/concern.  Even though we believe we caught this early, is it normal that a Doctor would wait this long to do this surgery? 

Any thoughts would be so appreciated.  

 

Login or register to post replies.

Pages