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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newmanmark's picture
Replies 5
Last reply 9/16/2011 - 9:30am
Replies by: Anonymous, jax2007gxp, akls, EmilyandMike, DebbieH

Hello all,

I posted last week about a lump that I discovered on my elbow.  I met with my oncologist yesterday and he is not overly concerned.  He thinks that it is likely connective tissue as the tip of the elbow is not a usual spot for lymph nodes.  He told me to monitor it for now.  I'm feeling much better after that!

I know that there will likely be many more scares to come.  I need to learn how to manage the fear and anxiety created by these experiences.

At this time I would love to hear from any stage 3 patients who are continuing to live with NED!  At times it feels inevitable that I will have to deal with melanoma again.  I try not to think this way but its difficult.  I have a 1.5 year old daughter with another child on the way.  The thoughts of potentially leaving them devestates me.

Mark (Stage 3C)

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Shelby - MRF's picture
Replies 1
Last reply 9/15/2011 - 11:54pm
Replies by: JoshF

Don't forget to register for our FREE patient symposium in Chicago, IL on October 1, 2011 at the Hilton Garden Inn - Downtown/Magnificent Mile.  Registration and breakfast will open at 8:15 am and the symposium will begin at 9 am.

Dr. Howard Kaufman at Rush University Cancer Center has assisted us in planning a wonderful and informative agenda for the day!  Use the following link to learn more! 

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lizard's picture
Replies 1
Last reply 9/17/2011 - 10:32pm
Replies by: MariaH

Hi all

Just wanted to give a quick update and a huge thank you to all who responded to my earlier post. The gist of my question was that my wife has stage 3a and we were debating taking and scheduling the interferon. My job takes me out of town and we were trying to figure out how bad it was going to be - if I could safely leave her for a day or two.

We did decide to do the peg interferon and she gave herself the first injection Monday night. The only side effects so far have been waves of high fever, headache, serious fatigue, and backpain. This has been constant since the injectction, but nothing worse than that. She is trying to drink a lot and eat mild foods. With any luck it only gets better as things progress and we get back to something that feels like "normal" life soon.

See you

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Sherron's picture
Replies 3
Last reply 9/17/2011 - 3:50am

Thinking of you, and wish the you the best.

Take Care,

Sherron, wife to Jim FOREVER

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jmmm's picture
Replies 18
Last reply 5/27/2012 - 10:31pm

My husband will be starting Zelboraf in the next week or so.  What "real" side effects can he expect--I know we have the information the dr. read us from the website (my hubby is the 1st patient his doctor has on zelboraf).  We just want to know what other patients are experiences and any suggestions on things that can help him feel better on the medicine.  Thanks for any help!

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j.m.l.'s picture
Replies 5
Last reply 9/15/2011 - 8:02pm
Replies by: Anonymous, Lisa13, AlanM, j.m.l., jmmm

Thank you all for your advice and best wishes. Thurs. I start IPI for first round. Have stage III mela. and spreading. Newest tumor on vein and nerve cells. Had 4 prev. operations but now time for systemic help. ANY HELP FOR DEALING WITH TREATMENT, ETC GLADLY WILL BE READ.

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Bill G's picture
Replies 9
Last reply 9/17/2011 - 4:20am

this month.  Stage IIC on top of head with satellites.  Given odds of less than 25% for 5 year survival because of its depth and closeness to vascular system.  Breathing easier thesse days.  My thoughts and prayers go out to all for positive outcomes

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

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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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