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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Anonymous's picture
Replies 14
Last reply 10/13/2011 - 12:47pm

My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr. oncologist, told them, since he has been "cancer free" for 5 yrs, annual scans are no longer neccesary.   My son did opt to do scans for at least 2 more yrs.  Dr also said, "the return of his type of "cancer"  very rarely returns after 5 yrs".  I was talking to my son's wife last evening, about  what the Dr. findings, and what he told them about the chances of no return, after 5 yrs.  I told her that was not true.  She got upset with me and told me, " he is a Dr. and he knows these things".  I am scared they will get less vigilent.   I was the one who was my son's caregiver when he was diagnosed, & while he did 2 yrs of treatment.   I was the one doing the research while he was fighting his battle, and trying to carry on with his life, and build a career.  Which he did even while going thru treatments!  He has an amazing story!   After my son got married, I handed over his recoreds to them.  I explained as much as I could, and the fact that this cancer is more then likely never gone.  This is a life long battle!   I know my son did know about the seriousness of this cancer.   He had always read his records.   How do I go about  telling them his Dr was so terribly wrong, without upsetting them more?   I can't believe my son excepted this!   I would like at some time to appoarch the subject of him going back to MD Anderson, for his yearly scans.  Yet, don't want to upset them more.    I do not know this Dr.   This is one he got after his original oncologist retired.   I sometimes think they both now live in denial, and this Dr. just reinforced their denial.  

     Another question, the scans showed he has a kidney stone.  How do they know it is a stone and not cancer in his kidney?  My son opted not to see a urologist, since the stone doesn't bother him.   Silly man!!!!   When this stone decides to bother him....... he WILL know he is bothered!!!    

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jax2007gxp's picture
Replies 6
Last reply 10/13/2011 - 11:27am
Replies by: Anonymous, jax2007gxp, Vermont_Donna, FormerCaregiver

Hey all,

Hoping someone is home on a Friday night...last night as I was falling asleep I noticed what feels like a small but swollen, sore lymph node in the left groin.  I fell asleep and forgot about it until just now when I felt it again.  Could mel have jumped from the right side to the left and so quickly?  I just had scans on 9/6 which only showed the mel in the right groin and the LND was done just a few days later on 9/9.  I know there are multiple reasons for lymph nodes to get irritated, but I have rarely ever had groin ones swell throughout my life.

I see an oncologist for consult on Monday and my surgeon on Tuesday, but I think I am going to need some reassurance to get through the weekend.

Many thanks,


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Lisa13's picture
Replies 4
Last reply 10/13/2011 - 12:15am
Replies by: FormerCaregiver, momof2kids, Anonymous

My final ipi infusion is tomorrow and I just had bloodwork done today. My lymphocytes are up again from 225 to 258 which my Dr said is really good. Let's hope they keep going up once this final infusion is administered.  My LDH is up again but my Dr isn't concerned. It seems to go up, down, then up and down again, so if he's not worried, neither am I. Perhaps my lung nodules are inflammed from the attack of my immune system :)

I'm holding my almost 2 year old daughter while I'm typing this and pray that this drug will work for me for a long time.


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

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Lauri England's picture
Replies 8
Last reply 10/12/2011 - 9:10pm

The nurse from my doctors office called me with the CT scan results after I have called 3 times.  I was told I have a 3 mm nodual on my lung and my liver is showing abnormalities.  She said the doctor would go over this with me in more detail at my appt on the 20th.  I am freaking out.  The nurse did say that the doctor wants me to be re scanned in 6 months.  6 Months!!!!! Yeah right.  I need to know what my choices are.  I just finished a year of Interferon a month ago.  I know they are not sure at this point if it is Melanoma but I know going into this my scans were clear with no abnormalties.  Any advice would be appreciated.  Thank you and God Bless!

Don't sweat the small stuff. There are bigger fish to fry!

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James from Sydney's picture
Replies 2
Last reply 10/12/2011 - 8:16pm
Replies by: bcl, JerryfromFauq

Researchers find 2 new Genes which might one day assist us in predicting the risk of getting Melanoma.

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JerryfromFauq's picture
Replies 1
Last reply 10/12/2011 - 7:31pm
Replies by: jim Breitfeller
I'm me, not a statistic. Praying to not be one for years yet.

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jim Breitfeller's picture
Replies 22
Last reply 10/12/2011 - 5:46pm

So before you try PLX4032 (ZELBORAF/Verurafenib) as one of your trials if you are BRAF+, You may want to look into a BRAF + MEK trials first.

"Acquired resistance to BRAF inhibitors mediated by a RAF kinase switch in melanoma can be overcome by cotargeting MEK and IGF-1R/PI3K" -Dr. Meenhard Herlyn

There is also some new out about  BRAF inhibitors + Metformin.

Best regards


Jimmy B

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trishahimm's picture
Replies 14
Last reply 10/12/2011 - 5:08pm

Hi all,

I have a couple of questions for the panel of pros here. 


My dad had a very large and deep ulcerated melanoma tumor on the bottom of his foot with metastasis throughout the groin with "invasion " into the lymph and blood vessels. They had to wait until the surgical sites were healed before starting the radiation on the foot and groin for 8 weeks and then interferon for a year. That was the treatment plan they laid out for him just after his surgery about 8 weeks ago. So finally he healed and started radiation about 2 weeks ago and last week he noticed 4 new rapidly growing spots on his foot. The surgeon cut them out and they will not have results until tomorrow or Thursday but the surgeon and oncologist are positive this is more melanoma. He will be going in for new scans soon.

My dad's question: do the new tumors start from deep in his foot and then grow up to the surface? He is thinking that because the original tumor was 11 cm deep, these somehow started down deep and then have worked their way up. I don't think this is the case, but I don't really know. Does anyone know? I told him to ask his oncologist as well.

My question: is this really soon for a recurrence? This seems pretty aggressive to me when there were no signs of additional cancer in the foot just 3.5 months ago when they originally did surgery on the foot and to have 4 pop up and then double in size within a matter of 5 days.

Any feedback or comments would be appreciated.



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Anonymous's picture
Replies 4
Last reply 10/12/2011 - 3:18pm
Replies by: barb3246, Hereiam, Janner

I have been really worried about a pink lesion on my upper arm that has been there for 3 months since I had my WLE for an in-situ on the same arm, so I finally called to see if there were any cancellations, and surpisingly they took me last week. He completely removed 6 "interesting" looking moles via punch, and took a punch biopsy in the middle of the red patch on my arm, so a total of 7 biopsies. YIKES!!  He made some comments about "well this one has fuzzy borders", and "this one has an interesting shape", and "that one is very dark". He wouldn't commit to what he thought the pink lesion was, just that "it could be anything". Of course I have already decided that it must be an amelanotic melanoma!

I'm not sure if any of the moles that he removed have changed or not. I never really even noticed a couple of the ones he removed. Several of them looked like the in-situ, which actually didn't look too scary anyways - it was just a small flat mole that was a bit darker than my other moles. Nothing that really alarmed me, so that's why I am worried. I have LOTS of weird looking moles on me. I have had probably 30 moles removed over the years, and most have come back as mild-to-moderately atypical. One was severely atypical, and the most recent was melanoma in-situ. Maybe he is just being extra cautious, which is fine, but I wish he had said something reassuring to me so that I wouldn't be so worried.

Now I'm a nervous wreck!! All I keep thinking is, what if some of these turn out to be melanomas too? I wonder how common it really is to develop multiple primary melanomas.  I've read that its around 10%, but it seems like a LOT of people on this site have developed several, so it seems like maybe the 10% is low.What if I'm not so lucky this time and its more advanced than in-situ? How do I learn to live with this constant fear??????? I really need to get a grip.

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Happe10's picture
Replies 2
Last reply 10/12/2011 - 12:35pm
Replies by: Janner, mombase

So, you all don't know me, but I feel as if I know all of you. I have been following the board daily for a year and 5 months, since just before my diagnosis. I have never posted as I did not feel as though I have the right to. My melanoma was in situ, it was removed and I thought I was done with it. Mentally, it is not over and I am still very afraid. I have hundreds of moles and needed to know that someone else could help me survive this. I decided to do follow up at MDA. I live North of Houston. I have gone to my follow ups, have some lovely new scars and some fabulous full body shots to keep a lose eye out. So far, so good. All have come back fine. I am in good hands but am still trying to get my head on straight. 

Most people would have thanked God and moved on. Somehow, I have been stuck here. I have moved on with my life but part of me has been here with all of you. I think it is part of my heart, maybe a piece of my soul or maybe my innocence. I am not sure. I know that I am not the same person I was before melanoma. Something happened to me after my diagnosis. I changed. I have felt so many emotions over the last year following your lives. I feel guilty that I was so lucky. I want to understand why I am here and you are there. Why not me? I have been searching for the answer for so long. I have been watching from a far, celebrating your joys and crying at your loses. I have followed research and studied clinical trials. I have PRAYED! 

I will continue to pray for you and your families. I will pray for strength and peace as you battle this horrible disease. I know in my heart that a cure is just around the corner. So now I am going to say thank you to Janner. I am leaving the board now after reading your last post. Why am I still here? I wanted to make sure you are all ok I guess. I have been waiting to witness a miracle. I have read a few and they give me such hope. I have wanted to find that answer, why NOT me. I am starting to realize that I won't find that answer here. 

What I did find is a group of the most courageous people on the planet. Thank you for sharing your lives with me. I am so grateful for your knowledge, honesty and love for each each other. Your courage is unending and your compassion is inspiring. I am a better person for having found this board. 

With gratitude,


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nickmac56's picture
Replies 7
Last reply 10/12/2011 - 9:51am

A new chemo regimen for her. She's pretty beat up from her recent gammaknife treatment for the five brain tumors and the removal of the golf ball size tumor on her arm. But she knows she needs to try this. She's not thrilled about the upcoming hair loss to say the least. But if this treatment buys some time and gets her through the holidays she will be happy. Supposedly it is not as side effect laden as more typical chemo treatments - fatigue and hair loss being the notable side effects.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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deardad's picture
Replies 3
Last reply 10/12/2011 - 8:00am
Replies by: Anonymous, deardad, FormerCaregiver

Any suggestions for next plan of attack after BRAF not working?

After 3 weeks on Vemurafenib my dad has developed a egg size lump in his throat and is having scans this Monday. What do we do if they take him off this drug? Hes 64 with liver spleen and prior craniotomy. Not sure if theres anything going on up there yet. Any experiences after BRAF would be great. Thanks.

Nahmi from Melbourne

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Joan C's picture
Replies 16
Last reply 10/12/2011 - 2:39am
Replies by: bcl, Donna, Anonymous, Joan C, Donna M., jax2007gxp

I apologize if someone already posted this, but I just read it.  I hope all the other states follow suit!

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j.m.l.'s picture
Replies 1
Last reply 10/11/2011 - 11:00pm
Replies by: kylez

Has anyone had a side effect from yervoy which led to intense buzzing in the ears and head? We cant seem to make the connection. This condition started 2 days after the second dose of IPI. Seems to be effecting left side of my head, ear, eye. Any ideas? thanks

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kbc123's picture
Replies 5
Last reply 10/11/2011 - 6:22pm
Replies by: Jydnew, Anonymous, Hereiam, Janner

Good Morning Warriors..

I am trying to convince myself that I am just have total ANXIETY and there is no NEED to worry but I cant help but ALWAYS bringing Melanoma up to the forefront...

I am considered Stage 3a (a few cells found in one sentinal node by NYU - mole was 1.01 - non ulcerated - wide excision and LNB in February 2011) and here I am, eight months later..

I was also diagnosed two years ago with a herniated disc at L5-S1 - I had horrible back pain.  they sent me for MRI and for therapy and that was that.  I was cured never to have a problem with it again. 

Last Wednesday, I dozed off on the couch, woke up in the middle of the night with pain, not horrible pain but pain, lower back again, that progressively got worse through the day.  I did visit my ortho by the end of the week as I was in horrible pain again.  ASSUMING I am just dealing with SCIATICA again, he sends me to Physical Therapy, which I am doing, but I cant help but THINK, can this be something starting in the back now?  I know, I AM probably crazy, ( no, I KNOW i am crazy - that is a proven fact) however, does anyone think I should CALL my oncologist and run it by him.?  I have to say I do feel, maybe 10 percent better than last week, but it just feels like it is taking forever to start feeling myself again.  I was on Medrol Dose Pack and some non-narcotic pain meds but I still have the pain down the butt and thigh and its tough getting around.

So, give me some input, so I can sleep at night again !

Hope this note is finding everyone having a great AUTUMN day !


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