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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rjcravens's picture
Replies 1
Last reply 9/14/2011 - 5:36am
Replies by: triciad

Has anyone experienced chest pain while taking sub q interferon? It just started this past weekend. Everytime i take a deep breath theres a pain that shoots thru my chest and into my back. No cough or anything, short of breath easier with activity. I have been on sub q since june. Just curious if its a common side effect.

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I was originally diagnosed with stage 4 about 8.5 years ago, with tumors in my liver, spine, liver and spleen.  I went through biochemo and miraculously went into remission for a year, but had a maintenance program for a year of high dose interleukin-2 once a month. After about a year in remission, I started to get tumors in my soft tissue in my groin and leg.  After about 4 or 5 surgeries to remove the tumors, over the next year, I had six tumors in my thigh and groin area appear.   I was one of the early ipi trial participants over 6 years ago.  I had 4 infusions 6.5 years ago and then another 4 two years later.  My side effects were primarily a rash on my abdomen and the back of my legs, and some fatique. 

4 of my tumors shrank fairly quickly, and then disappeared within a year but one started growing a year after my second infusion and had to be surgically removed.  My last tumor then disappeared shortly after my surgery, and I have had clear scans for the last 3.5 years. I have also not had any new tumors appear since I started the IPI trial.

IPI has saved my life !!!! 

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MRFUser2011's picture
Replies 4
Last reply 9/14/2011 - 5:41pm

Hi all, as much as I am thankful for you all being here, I sure wish I was NOT visiting tonight (and I know you all understand that!)  So here is the short, condensed story:

4/08 Dx Stage III on left foot, mets to left inguinals and surrounding tissue, removed via surgery 5/08.

Clear scans until 4/10 when nodules in lungs caught on PET/CT (6mm left/8mm right lung), monitored with scans for almost a year, then right nodule removed 2/11 (2.1 cm) and left nodule removed 4/11 (.9 cm)  

PET/CT of 4/11 (post-op) showed all clear except signs of surgery.  PET scan of June 2011, still clear.  Brain MRI of 4/08 and 1/11 both were clear of any abnormalities.

Today, 9/12/11, I had a PET/CT and for the first time, had no contrast with the CT (long story).  I wasn't home 15 minutes and my oncologist called to tell me there was a 1.6 cm lesion in the right frontal lobe of my brain.  It showed no abnormal fdg uptake.  I don't know if having no contrast on the CT made any difference on the next step but she wanted me to get a brain MRI asap.  So that is in the works for this week hopefully.  Otherwise, everything is clear.

So, my question for those with brain mets is do they ever show up with no abnormal fdg uptake?                                    Can they appear so quickly (in just 3 months) and be to this size already? (My lung nodules were very slow growing) If I had had contrast with CT scan, could it have given any more definitive info (such as it being a vascular issue and lack of contrast would not show the vascular system)?

My husband reminded me that I hit my head pretty hard about 3 weeks ago getting something out of his car.  We are pretty sure it was on the right side and it was bad enough, I felt like I was going to pass out.  From what I read online tonight, head injuries are the most common cause of brain lesions in the frontal lobe.  So I am hopeful.

Any info, suggestions, questions to ask, etc. are welcome.  I just know that there will be people on here that have been down this road.  Thank you for taking the time to read this (and answer if you are able).


Shari (used to be Shari in Cal screen name but changed it because my teen son accidentally came across my posts while doing research on his computer.  So it is still me, just a new screen name to protect my identity a little and my son's concerns).






Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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emilypen's picture
Replies 4
Last reply 9/15/2011 - 8:20pm

Hi All,

My hubby had his 4th IPI infusion last Thursday. We've noticed that typically 7-10 days after an infusion he gets tired, achy and his sub q mets swell up, get sore to the touch and very hot. However none of them have completely disappeared. A few have gotten smaller, but every day it seems that more are popping up across his torso and back.

Now on day 4 after the infusion, he's incredibly achy, sore and fatigued. He says everywhere hurts and we've had to up his morphine to help him sleep.

He also has bone mets, but he says the pain is not the same as the bone mets pain, this is more sore and achy rather than sharp and overwhelming.

Just wondering if anyone else has had a similar response? Our onc says he hasn't seen it before but is keeping an open mind.

Also wondering if it's more likely that mets in the interior of the body rather than the fatty areas might react before the sub q's?


And lastly, our onc also said that this may be the last treatment available for him, as if IPI does not work he may be too sick to qualify for another clinical trial.

We've already tried;



BRAF inhibitor



I've mentioned trying IL-2 after IPI , but because of the toxicity our onc is concerned he may not qualify for the treatment.


Any suggestions are welcome.





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



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?



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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 -


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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 long does IL2 treatment boost the immune system to keep working?  (hopefully that made sense)  First scan after treatment was kicking mel's 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!


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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!!!


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