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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marfda's picture
Replies 2
Last reply 12/8/2011 - 8:43am
Replies by: Phil S, lhaley

I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

I went around the system today and asked the rad onc to give me results while at my radiation appointment today (the results are online for doctors affiliated with the hospital.) So, I got around the system today, but I know if I had not had my results and the nurse had called to tell me nothing, I would be having a crazy anxiety attack.  It also feels like we as patients are treated as infants in this system. Like we can only handle having a doctor to deliver the news to us.

PS I do understand that the results can be hard to read and interpert and people might freak out. But, in my case, I am informed and want to advocate for myself! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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Kim41's picture
Replies 11
Last reply 12/7/2011 - 11:52pm

I had lymph nodes removed from left groin 3weeks ago and now noticed a hard lump beside lower part of incision. Has anyone ever had this. I dont think its scar tissue and it feels hard and oblong. Worried its a lymph node they may have missed. I still have my drain in and it seems to be working fine. I will call Doctors office in am. Just thought someone may have has this same problem. Thanks.

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lhaley's picture
Replies 15
Last reply 12/7/2011 - 6:15pm

I am so thankful.  Original brain tumor (21mm) was found Oct 4th that was showing symptoms.  SRS done Oct 17th and was told that there was approx 1cm bleeding at the time.   EMR Oct 30th due to severe headaches but told stable.

Today's MRI was good!  There has been shrinkage of 20% and it shows nucrosis spaced through out the tumor.  Has not bleed again since the first time and is slowly being absorbed.  Both the radiologist and melanoma specialist both were so excited and had only smiling.  They feel that all of the issues I've been having are steroid symptoms.  Now we are finishing weaning.  They have slowly been weaning me off and should take about another week or so. 

Every joint has caused problems but they have told me if I do have some headaches that I'm not to worry.  Sometimes it does happen. If they're bad then I call back.  Meanwhile next PET scan is the first week of Jan.  


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robbier's picture
Replies 6
Last reply 12/7/2011 - 4:23pm

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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So, I did work around the system today and had a doctor at my radiation appointment give me my scan results. There is tumor activity in my groin (where I can feel an obvious lump) and also in my armpit on that same side. This is the first cancer activity not involving my back or groin lymph nodes. I don't like the idea that it's moving, but I'm relieved to hear that my brain and lungs and other organs were clear. I can deal with more lymph node involvement, right? 

I see my oncologist tomorrow, so we'll see what the plan from here is. 4 days left of radiation!

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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Anonymous's picture
Replies 8
Last reply 12/7/2011 - 4:13pm
Replies by: Katg416, Anonymous, Charlie S

I saw this on MIF's Forum: 

Cancer 101, supported by Genentech, and  in collaboration with MIF and others has created a Melanoma Planner with lots of melanoma information and an organizer to keep your bills, tests and studies in hard copy files.  To get yours:  call 646-638-2202, email: ,  to see it,


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alicia's picture
Replies 2
Last reply 12/7/2011 - 2:54pm
Replies by: Anonymous, MariaH

I posted earlier about my friend who just found out melanoma has spread to liver, splee, and spine. He just started radiation today, getting 10 doses to the spine then the oncologist wants to start him on temodar when he finishes radiation. He is braf positive and I would think she would recommend one of the newer braf inhibiting drugs. He is seeing his local oncologist who is not a melanoma specialist because he's not well enough to travel to Vandy to see his Mel specialist. I recommended he at least call his dr at Vandy to see what treatment they would suggest or have his local dr make a suggestion. What are your thoughts? Are any of you doing temodar in this similar situation and are you seeing good results? That's so much for your time and help. Much love!!!!!

Alicia stage 3 w/ mult primaries

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Laurie from maine's picture
Replies 9
Last reply 12/7/2011 - 11:01am

Just came from doctor with scan results from 4 months on zelboraf.  Liver tumor continues to decrease, lungs have stayed same.  But intestines now have two big tumors wrapping around them growing quickly. :(   I go tonite for MRI and thurs for PET scan.  Plan as of now is surgery asap to remove two intestinal tumors, meanwhile staying on zelboraf until surgery (dr is checking on whether to stay on or not) and then figure out what plan I go with from there.  I am going to be hopeful/optimistic as I sailed thru the last intestinal surgery and was out of hospital in 4 days and walking around fine.  Doctor said sometimes each area of the body reacts differently to the drugs, and he is hoping that the stomach/intestine is only area that didnt react to Zelboraf. But guessing he is also thinking if I am strong enough after surgery we go to ippi or interleukin?    I am guessing plans might change depending on mri and pet results

wish me luck - keeping strong thoughts and staying strong not going to let this knock me down.

laurie from maine. 

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momof2kids's picture
Replies 13
Last reply 12/7/2011 - 7:21am



Hello everyone. I haven't posted lately as I've been so scared, wondering if this Yervoy was going to work on me!


Diagnosed in June 2011, out of the blue, straight to Stage IV (Brain, Liver & Lung)

I got all 4 injections of the 3mg dose with not a single side effect from September 2011 thru Nov 2011 I thought for sure maybe my body wasn't responding!  I never understood the blood levels, that others said to look for rising numbers, I just gave up trying to figure it out and just figured my body will do whatever it wants.

GREAT NEWS!!  We saw the scans ourselves today! My lung & liver tumors have all shrunk down, can barely see the Lung tumor (was around 5cm), and the big Liver tumor went from 6cm down to 2cm...and this is the 1st scan since completing the 4 doses!
We can only hope that another scan in 3 months will show more shrinkage!
Brain scans came back CLEAN TOO! Quarter size tumor GONE (thanks to Gamma Knife in July, took almost 6 months to disappear), and the spot I had my tumor removed from on my brain in July, is back to normal looking!
All doctors happy FOR NOW, AND SO AM I!! 3 months of NO treatments or scans for now!
This treatment , the body "remembers" this type, and should continue to kill cancer cells it finds, and I can continue on this treatment again if needed, since my body accepted it!  There's no plans for future treatments of it until they see the need to continue on it, then I can continue to get it after that since my body accepted it once, it should accept it over & over.

I truly hope, like Lisa13 said in her post (that her doctors said) he's had patients who were on this for YEARS, and it was still working. I can only truly pray & hope that this will be the same way for many of us!

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Anonymous's picture
Replies 3
Last reply 12/5/2011 - 7:39pm


Val, how are you doing!

I am been traveling & trying to catch up on everyone. I cannot find out anything from Valin from Canada. Anyone heard from Val?

Hoping the best for you Val.

God Bless


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Anonymous's picture
Replies 2
Last reply 12/5/2011 - 7:19pm
Replies by: Richard_K, Tim--MRF

So should men be careful not to get someone pregnant while on Zelboraf?

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Sharon in Reno's picture
Replies 9
Last reply 12/5/2011 - 2:44pm

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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justlittleoleme's picture
Replies 9
Last reply 12/5/2011 - 9:14am

My husband was randomized yesterday and he received the ipi arm of the trial!

First infusion is Monday.

Any suggestions for what I can do to alleviate symptoms?

What can we expect after the infusion?


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

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jmmm's picture
Replies 1
Last reply 12/3/2011 - 7:09pm
Replies by: momof2kids

I posted a couple of weeks ago about being scared of my hubby's craniotomy. Thanks for all the kind words. He sailed through the surgery and came home 48 hours after arriving in the recovery room. Simply amazing. He was walking the halls the next day. So far, no side effects and he's only taken 3 pain pills since leaving the recovery room. There really hasn't been pain at all for him.

So, now he's gearing up for gamma knife on the 22nd. His tumor was 5.5 x6.5 cm. And the doctor couldn't get it all safely with the craniotomy. Any advice on gamma knife would be appreciated.

Also, the pathology came back and shows that the cells were malignant and were shown to have been treated and in the process of dying. This proves, at least in him, that Zelboraf DOES pass the blood brain barrier.

The oncologist has mentioned Temador. He was going to consult with some other specialists, but is anyone using Temador and Zelboraf to help prevent additional brain tumors?

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Denise's picture
Replies 5
Last reply 12/3/2011 - 6:39pm
Replies by: Anonymous, eaca, Denise, DonnaK, Fen

Hello.  My mother was recently diagnosed Stage 2b and is having surgery on December 14th.  Her doctor (Dr. John Kirkwood in Pittsburgh) has recommended interferon therapy following.   I've researched it and it does seem scary.  I'm particualry curious if anyone has personal experience with an older patient on this treatment?   I understand there will be side effects, and that all patients react differently, but any insight/advice would be greatly appreciated.

Praying for a CURE not only for my mother but for all melanoma patients!   St. Jude, please pray for us.

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