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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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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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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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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Anonymous's picture
Anonymous
Replies 1
Last reply 9/12/2011 - 1:59pm
Replies by: washoegal

Hi,

 

I am coming up for an appt with Dr. O'day but told he is on leave of absence. Anyone know when he is coming back?

 

Thanks

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jmmm's picture
Replies 6
Last reply 9/12/2011 - 1:29pm
Replies by: rbruce, JerryfromFauq, Charlie S, Anonymous, MariaH

I'm looking for information on what other melanoma specialists are recommending right now.  My husband was dx with stage 4 in January.  He finished yervoy in July--2 tumors disappeard, but by the end of August, he now has 2 more tumors.  His doctor isn't a melanoma specialist--we have an appointment next week with one.  From the research we've done, we feel like there are 3 main options--Zelboraf, IL-2, and ACT trials.  We've found (from another patient), that John Hopkins recommends Zelboraf, following yervoy.  We're wondering what other specialists are suggesting now.  Thanks,

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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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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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Lori C's picture
Replies 9
Last reply 9/10/2011 - 10:46pm

I hope this is okay.  Many of you "know' Shelly in Switzerland, the expat from Vermont who, with her family, had moved to Switzerland and had been fighting stage four melanoma.  Shelly's positive spirit always inspired me.  She passed away last week.  Here is her Caring Bridge site http://www.caringbridge.org/visit/shellypilcher1

Shelly had experienced good results with treatment, and had enjoyed what her husband called "the gift of extended life" as a result of it.  She was an amazing warrior.

 

Lori Challinor

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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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newmanmark's picture
Replies 8
Last reply 9/10/2011 - 3:49pm

Hello All,

I have had a small lump (pea sized) on the outside of my elbow for quite some time.  I can't remember if it was there before my cancer situtation started.  I was wondering if anyone knows if we have lymph nodes in the elbow region (outside of elbow)  about and inch and a half from the tip of the elbow?  Has anyone had a lymph node swell in this area due to the melanoma?  I know that its not the common regions for lymph node involvement.  I had a complete lymph node disection in both armpits and melanoma was found on both sides.  I am concerned that it could have traveled down my arm.

I don't want to panic but I guess I should go see my onclogist.

Thanks

Mark

 

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himynameiskevin's picture
Replies 10
Last reply 9/10/2011 - 8:23am

Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

So they want me back in 4 weeks, where I will get another CT and PETscan. If the scan shows it's still the only one growing, then the next day they're growing to do surgery on my lung and remove it manually. Hopefully with small incisions, a small instrument with a camera on it and minimal downtime if I lucky. If the scans show more than the one growing, then the ACT I think will have run it course, and there will be no surgery, but hopefully other possible options.

Strange times when you find yourself hoping for lung surgery. ;)

We'll see, you know, maybe there'll be some unexplainable miracle and the thing will just disappear. Maybe everything will, and they'll just send me home with a congratulatory handshake. They say anything is possible right?

Anyway, that's my update, overall I'm doing real good, still working and living as normal as I ever did. We'll see what happens in a few weeks. I'll let you all know.

Thanks for the ongoing concern and support.
-Kevin

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Lisa13's picture
Replies 10
Last reply 9/9/2011 - 9:53pm

It's been awhile since we've done a rollcall for Yervoy/ipi, so I'd love to hear from the people who were complete/partial and non-responders.  There are many of us who have recently stopped or started treatment, so I'd like to see how everyone is doing. There's been a few postings in the past few days of people failing on this treatment and I'm getting worried and needing some ipi success stories pronto!

I'd also be interested to hear the non-responders next line of defense, especially from BRAF negative people.

Best of luck to each and everyone of us fighting this battle

Lisa - Stage 4

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

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beatricefromPARIS's picture
Replies 2
Last reply 9/9/2011 - 5:37pm
Replies by: PlantLady, lhaley

Update to contribute to the IPI Yervoy message of hope for patients:

 After first course of ipi (March to May 2011), substantial partial response with disappearances of some tumors. A few active spots still showing on the pet scan. Overall status is now basically stable. Brain still clear.

Re-induction phase should start next week.

No major side effects in the first round. A bit of fatigue and "mumbling" tummy plus (temporarily) a bit high eosinophils but overall...an "enjoyable" treatment compared to the previous ones! I'm told this is predictive of how I should bear the re-induction. We'll see...

Beatrice (stage IV)

 

 

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awg's picture
Replies 5
Last reply 9/9/2011 - 4:17pm

Hello,

 

I recently transitioned from high dose infusions to 3 weekly injections. I am tolerating things well but seem to be experiencing a dizzy feeling almost daily. I have read that dizziness can be a side effect of Interferon. Has anyone else experienced this, if so how did you treat it?

I currently do not have sinusitis so i can rule out all sinus issues at this time.

 

Thank you,

 

Allen

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5jenjen5's picture
Replies 10
Last reply 9/9/2011 - 4:03pm

I had a .42 melanoma removed from my calf in May and just had more removed from my wrist and do not know the depth. My question is: I am a very small women and the melanoma on my wrist is very close to the bone is this a problem?

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