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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Gene_S's picture
Replies 0

Jan please let us know how

Dirk is doing when you get a chance.

Judy wife of Gene Stage IV -Oct.  2010

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

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JerryfromFauq's picture
Replies 2
Last reply 9/12/2011 - 5:05pm
Replies by: jax2007gxp, bcl

Trial Assesses SLNB's Future in Melanoma Management
Elsevier Global Medical News. 2011 Sept 7, ML Zoler

NEW YORK (EGMN) - Sentinel lymph node biopsy continues to aid the management of about 30% of melanoma patients, though its role in the future will depend on ongoing follow-up of a major trial that started nearly 20 years ago to assess the effect of SLNB on patient survival.

But SLNB's role could soon be upstaged by molecular profiling and the identification of specific genetic mutations that drive various melanoma subtypes, Dr. Timothy M. Johnson said at the American Academy of Dermatology's Summer Academy Meeting.

"In the future, I hope we can do molecular profiling on melanoma and [based on that] tell patients who will benefit [from various targeted treatments] and who won't. We are already doing this [on an investigational basis] with several new molecular profiling tests such as BRAF mutations" and treatment with vemurafenib, said Dr. Johnson, a professor of dermatology at the University of Michigan in Ann Arbor.

For the time being, melanoma patients should be counseled regarding SLNB if their tumors are at least 0.75 mm in Breslow depth and if they meet certain other criteria.

Even patients with thinner tumors should be counseled on the pros and cons of SLNB, because they will likely hear or know about the technique and may have questions. That is the approach taken at the University of Michigan and other centers, he said.

"SLN status is a powerful predictor of survival in the relatively small subset of patients where SLNB is indicated," he said. Reasons not to do SLNB include thin primary melanomas generally less than 0.75 mm with a low probability of a positive SLNB, high comorbidities, and maybe prior wide local excision, certainly in areas of ambiguous lymphatic drainage or following a local flap. This group includes about 70% of all U.S. melanoma patients. Albeit rarely, these thin lesions may be at higher risk when they have greater degrees of adverse features or positive deep margins on shave biopsy.

Melanoma patients with primary tumors that are 0.75-0.99 mm generally need an additional risk factor, such as ulceration, young age - up to about 40 years old, an increased mitotic rate, or angiolymphatic invasion to justify SLNB. When patients have additional risk factors, "we have a discussion with the patient to help them decide," he said. "We tell them the likely rate of positive lymph nodes based on our best information."

A clearer role for SLNB exists for patients with tumors with a Breslow thickness of 1 mm or greater. In these patients, exclusions from SLNB include "highly significant" medical comorbidities, a prior wide excision of the tumor, and tumors in "ambiguous" lymphatic drainage areas, such as the central back or central chest. Even in these cases, exclusion from SLNB "usually occurs but not always," Dr. Johnson noted.

Patients whose tumors have a Breslow thickness of more than 4 mm are also candidates for SLNB. In these cases, SLNB can help refine the patient's prognosis, and may also aid the choice of adjuvant therapy.

Historically, patients with tumors 4 mm or larger were considered likely to have distant metastatic disease and a poor prognosis, and, hence, no benefit from SLNB. But Dr. Johnson and his colleagues showed a substantial difference in survival rate between patients with positive and negative SLNs even when they had thicker primary tumors.

In a series of 227 patients with melanomas at least 4 mm thick and no clinically or radiologically-apparent distant disease, patients with a positive SLNB had a 5-year overall survival rate of 47%, while patients with negative SLNs had a 5-year survival rate of 80%, a statistically significant difference (P less than .0001). The difference in 5-year distant disease-free survival rates ran slightly larger, 85% in the node-negative patients and 48% in the node-positive patients (P less than .0001) (Cancer 2009;115:5752-60). Following this study, supporting evidence has come from several other research groups.

The ongoing Multicenter Selective Lymphadenectomy Trial (MSLT) should provide more definitive evidence on the survival effects of SLNB. The interim, 5-year follow-up data from 1,327 patients at 18 worldwide centers reported in 2006 included patients with primary-tumor Breslow thicknesses of 1.2-3.5 mm. Although the study's primary endpoint of the 5-year melanoma-specific survival rate was similar in the patients randomized to SLNB or wide local excision (87%), the prespecified secondary endpoint of 5-year disease-free survival ran 78% in patients who underwent SLNB and 73% in the wide excision group, a statistically-significant difference (P = .009) (N. Engl. J. Med. 2006;355:1307-17).

"The question is, can we identify a subset of patients with occult nodal disease with SLNB, intervene early, and improve outcomes? At face value, the third interim analysis data [the 2006 report] suggests potentially yes. However, this is a subset analysis and its validity can be debated. The data certainly support the potential for a subset benefit in node-positive patients," said Dr. Johnson. Updated survival results from a longer-term, fourth interim analysis of the MSLT survival outcomes are expected within the next year, and will help answer this question.

In addition to the disease-free survival benefit shown in the MSLT, the 30% of melanoma patients who are candidates for SLNB stand to gain useful prognostic information from the procedure. On average, about 20% of patients who are eligible for SLNB have a positive SLN, and this subgroup of patients also stand to benefit from more durable regional control of their disease with better quality of life. The survival benefit most likely occurs in a subset, perhaps 20%, of the node-positive patients, he said.

In summary, Dr. Johnson said the main reasons to consider SLNB are prognosis, durable regional control, and potential survival benefit in a select subset. These factors should be presented in "an honest discussion with the patient and family about the risks and benefits of SLNB, to help them make a best informed decision," he said.

Although many cancer centers currently use SLNB for melanoma in the way outlined by Dr. Johnson, with "not much controversy" among the "mainstream" of physicians and surgeons who treat melanoma, he noted that "there is posturing and emotion with this procedure," with controversy among some clinicians about the proper role.

"Some dermatologists don't believe that SLNB should be used for anybody, and some surgeons overuse it on everybody. The answer [on when to use SLNB] is somewhere in between," he said in an interview. The forthcoming, longer-term follow-up data from MSLT may help clinicians how best to use SLNB most appropriately, he added.

Dr. Johnson said that he had no disclosures.

I'm me, not a statistic. Praying to not be one for years yet.

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bs010kbb's picture
Replies 7
Last reply 9/13/2011 - 2:00pm

I have completed all tests and received the clearance to participate in the trial viewing Interferon vs. Yervoy in an adjuvant therapy trial. I am 12 weeks post surgery and will begin treatment tomorrow. While I have commented on some postings, I have not posted since my initial diagnosis early July - what a wonderful, supportive group to be a part of. I was hoping to receive Yervoy in the trial but I was selected through radomization to receive Interferon. I am aware of all the side effects but if anyone has any recommendations of items to bring with me for 'comfort measures' or perhaps items that I should make sure I have within the home, I would appreciate feedback. It is always nice to know the 'tricks' that worked for others to keep comfortable during this time.

I am hoping that the side effects are minimal as the M4M Walk in our area is scheduled for the 18th of September. I will have 40+ family members/friends walking with me that day and we have raised over $8500 to date and keep going!!

Blessings to everyone -

Kim

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wgalinat's picture
Replies 3
Last reply 9/17/2011 - 11:57am
Replies by: wgalinat, ValinMtl

I've heard you are back home.
Tell me you are doing ok Val.

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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arborbnb's picture
Replies 7
Last reply 9/12/2011 - 6:09pm
Replies by: bcl, arborbnb, Donna M.

September 11, 2001 was a very strange day in our house.  the world was in chaos with the news of the Twin Towers.  In our house there was joy because my husband Peter, who was newly diagnosed Stage 3 had his scans and we got the call in the afternoon they were clear!!!!

 

Now ... 10 years later after IFN, surgeries and radiation we  rejoice in our good luck.

 

Keep up the fight .... Peter was one of the "responders" to IFN and although they never say he is cured, he has seen two grandchildren born, returned to work, tries to swim a kilometer 3 times a week ( in spite of an axillary node dissection and nasty radiation burns) .........

 

There is hope.  Now we are dealing with a daughter with a diffuse astrocytoma.  Treatment for this disease is in the dark ages and difficult and very wait and seel.  The prognosis long term is not good.

 

Julie in Prince George, BC Canada

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Impression: Many of the subcentimeter hepatic lesions are smaller or absent compared to previous.  The largest hepatic lesion (1.3 x 0.9cm) and enlarged lymph nodes (3.2 x 1.7cm and 1.8 x 0.8cm) within the left inguinal and obturator regions are unchanged.  Bony metastases unchanged.

*****************

I should be thrilled but for some odd reason I am disappointed?  Dr. had suggested I might be in remission at this scan so I feel I let myself and my family down?  I wish I understand this reaction because it makes NO sense.

Doing nothing for now.  Next scan in 3mos. ( May start Yervoy at that time).  One of my questions is...how long does IL2 treatment boost the immune system to keep working?  (hopefully that made sense)  First scan after treatment was kicking mel's tush...now it seems to have stalled?  Maybe I just don't understand this disease very well.  Do any of you have anything of offer my thought process that maybe I am missing?

Lytic disease...can this condition eventually heal itself?  The residual pain (compared to previous pain) is totally livable but my mind wants to believe pain = active melanoma. 

Thank you in advance for any replies.  I am just recently able to do some research and it can be so confusing and overwhelming!

Karin

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j.m.l.'s picture
Replies 2
Last reply 9/12/2011 - 12:27pm
Replies by: sss, JerryfromFauq

I expect to start a treatment this week for mel. recurring. Has anyone had experience w. zelboraf. I know its very new on market but has anyone started this drug. Any effects good or bad. Please help.

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Lisa13's picture
Replies 5
Last reply 9/13/2011 - 3:11pm

I'm 9 days out from my second infusion of Yervoy and havn't experienced any side effects. However, within the past couple of days, I've been feeling fatigued which is quite out of character for me. I just finished moving house and thought I was tired as a result of moving, but I find myself wanting to sleep in more in the morning and get tired in the afternoon. After reading my clinical trial notes, fatigues/tiredness is an autoimmune response, so at least something is starting to happen.

On another note, my hair is VERY dry!  I wish the very best for everyone in this battle.

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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Steve in Detroit's picture
Replies 8
Last reply 9/16/2011 - 2:11pm
Replies by: Anonymous, JerryfromFauq, jim Breitfeller, chenrydh

The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

 

Hello all...

Got a big decision to make...and I'm looking for some advice.  I am stage 4. met in my lungs and abdomen, all over really. I just finished taking the BRAF Plexxicon drug in august, since being off the drug the mets have gone crazy and are increasing rapidly. I am BRAF V600K,  not V600E so they think thats why I may not have responded to the Plexxicon.  I was just rejected at the NIH for the TIL trial. So now my options are to start the MEK trial or start on Yeroy.

The trial doctor doesn't have any stats on the MEK except to tell me that people that did not respond to the Plexxicon did respond to the MEK, but couldn't tell me much more.

My oncologist tells me to start Yeroy that I need something different than a BRAF drug. I'm concerned about the Yeroy as it is very toxic and that the response rates are so low. I was told today that the overall survival was 2.1 months but that others, less than 10% of the people were out 1-3 years.

If I take the Yeroy now, it basically excludes me from any trials at this time if it doesn't work. All I got left is chemo and we all know this doesn't have great results.

I progressed slightly on the Plexxicon (2011)

Did not respond to IL-2 (2011)

Did not respond to Interferon (2009)

 

Soo I'll take any suggestions, advice, stories.. anything... HELP!!!

 Kris 

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/17/2011 - 10:34pm

Anyone know how VAL is doing?

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TracyLee's picture
Replies 14
Last reply 9/14/2011 - 9:42pm

Hi y'all,

Haven't posted for a little while, because all is quiet on my melanoma front!

Still having a great response to BRAF. Neck node, which was the size of a chicken egg stuck to my neck, is now down to a small bump, about the size of a grape.

I ran into my surgical onc at high school open house. He hasn't seen me for several months, when I was in bad shape. He was SO excited to see my neck so improved! (And isn't it nice just to be doing normal stuff? Meet the teachers, torture our daughters?)  :)

My prayers are with others who are doing well, and for those who aren't. I'm exquisitely aware that things can change fast with melanoma. 

For those who are worn out with worry, I lift you in prayer.

For those who are currently in a good place, I lift you in prayer.

Wishing everyone a peace filled weekend.

TracyLee

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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mygirlmaddy's picture
Replies 31
Last reply 10/5/2011 - 10:35am

Once again, we have gotten bad news.  Before we give up and agree to palliative care  (as our oncologist wants), I am turning to all of you for any suggestions.  After nine months of being stable, although not cancer free, my husband's cancer has begun to spread.  It is still not on any organs, but nearly all of the lymph node sites are involved.  He also had a tumor on his wrist that our doctors rushed to have removed as it was eating through his bone.  He has tried IL2, Ipi, is BRAF wildtype and steroid dependent (due to hypofecitis from Ipi use) and too sick to qualify for most clinical trials.  Radiation successfully reduced the size and pain of a few of his tumors, but it's not a cure and his doctor doesn't want to keep radiating him knowing that it won't truly fix the problem.  She wants him to start Temodar to possibly slow the progression.  He is nauseous and vomitting more than he is not.

I don't want him or anyone else, myself included, to feel that we didn't do everything we could.  If anyone has suggestions for something we didn't try, I'd love to hear it.  

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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renakimu's picture
Replies 6
Last reply 9/12/2011 - 7:17pm

hello everyone!!

once again i have to say that saring with you things is very important for me!now i dont have smth to sare but i have smthg to ask.i have told you that my mum is 3b stage from april from a mole in her back, iwanted to have your personal expeerience with reoccurance, most of all the time that the beast came back...i know that every person is completely different from an other but just wanted to see....i am very thakefull to all of you..

 

best wished and many years of "NED" to all from my heart

DiRena

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Gracie's picture
Replies 3
Last reply 9/10/2011 - 8:38pm
Replies by: King, LynnLuc, lhaley

Yes I have been "lurking" for 14 months at stage 3b but recently progressed to stage 4. 

CT showed new nodule 1.5cm on left under arm chest wall.  Needle biopsy was positive.  Plus a lung nodule grew 6mm in 8 weeks that the pulmonary specialist tried to biopsy in late June but it was too deep and only 9mm at the time (too small) but is now 1.5cm. Still not absolute it is mel.

My melanoma specialist (oncologist) really thinks if I am "going to play ball, I should go for the home run" and try IL2.  I tried to join a trial study involving a surgery arm and the BCG (tuberculosis) treatment injection sponsored by JWCI.  I was rejected due to length of time we "kept an eye" on lung nodule that now has great suspicions to be mel even though we have not done a successful biopsy yet. 

I feel like I just want this mel out of my body right now but wonder if surgery is hasty as it may exclude me from other treatment options even though I am not sure what options there are at this point,

I have been on the ipi/placibo trial for 15 mos. and have not been unblinded yet.

Please share with me any options I could consider and if I should fly somewhere else to get a second opinion.

I feel like I know many of you by following your posts and now that I am in the scary boat, I love you all!

Gracie 

cancer is in my life, but is NOT my life

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justlittleoleme's picture
Replies 10
Last reply 9/26/2011 - 5:58pm

Hi, my hubby was recently rediagnosed with Melanoma. 

His original melanoma was diagnosed on 2/15/05 and he had a wide area excision on 3/29/05 with a sentinel lymph node biopsy.  At that time, no further treatment was recommended and he has been NED since that time.  He was classified as Stage 2A.

His recurrence is at the original location in the parotid.  The tumor is 27mmx26mmx30mm.  They are staging him at Stage 3 prior to surgery.

We are scheduled for a parotidectomy with facial nerve dissection, nerve graft and neck dissection on 9/23/11 at the University of Michigan Ann Arbor.  Our local cancer center (which we have loved) is unable to do the surgery due to the invasive nature.  The oncologist is advocating for just radiation after the surgery.

My question is this:  Should we be looking at further treatments? Clinical Trials?

We have another consult scheduled with Dr. Logan at the IU Simon Cancer Center on 9/19/11.

Thanks for your insight!

We don't know how strong we are until being strong is the only choice we have.

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