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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jax2007gxp's picture
Replies 5
Last reply 10/29/2011 - 1:36am

Hey all....thanks for all of the positive thoughts, feedback, and discussion from my earlier thread.  So here's the latest....the mel is all over the place...brain mets, lung mets, liver mets, spleen mets, spinal bone mets (waiting to get path on fluid but we are hopeful), tumor in chest, and lymph nodes in left groin and abdomen are suspect.  The good news...because I was so DILIGENT and refused to IGNORE what I knew wasn't right in my body, much of the mets is very small  (1-2mm).  From what I can tell, this is definitely a better place to start treatment from than months down the road!'s the plan....(fyi - I was just released from hospital 10/27)

10/28 - Met with WBR clinic near home...starting 10 treatments WBR today...they are even scheduling a special appt for me tomorrow (sat) to get my second dose in quickly

Once we complete the WBR, Gamma Knife will be employed at Hoag Memorial in Long Beach with Dr. Lindskey and Dr. Kuo.  They anticipate having 2 -3 tumors left to attack post-WBR (remember most of the 8-11 brain mets are <2mm currently).

In the meantime, med onc is still working on the chemo solution which is still leaning toward Yervoy as soon as I recover from radiation.  The doctors I am working with (Dr. S, Dr. J, and Dr. F) do not seem to be afraid to refer me out to a clinical trial they believe would be beneficial.  The major concern we have briefly discussed is a lack of caregiver if I leave So Cal (except if I go to Indianapolis).

In answer to some personal questions which have been batted around about me....I am a 40-year old female with limited family support beyond my 74 year-old father in So Cal and a 55 year-old sister in Indy.  I have spent my life being generally healthy and active, hiking 10-15 miles a week as recently as a few weeks before my July 2011 recurrence.  The one theme I continue to hear from my team is about my ATTITUDE!  I am going to kick the crap out of thisbastard!  I have lived a wonderful life and will continue to do so for some time to come.  I have been blessed with the people in my life, the experiences I have been afforded, and more than anything my own sense of personal awareness, responsibility and spirituality.

I appreciate all of you being out there in cyberland and I hope I can offer you similar hope as I progress in this journey!


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lizzykittycat's picture
Replies 5
Last reply 10/31/2011 - 4:28am
Replies by: JerryfromFauq, Jim M., Gene_S, Anonymous


i was wondering if anyone has paired any homeopathy with their conventional melanoma treatment?  i am currently seeing a homeopath and taking about 14 remedies daily.  with my 3a diagnosis, i decided to try and arm myself in ANY way possible.

also... does anyone have any suggestions for good books that i could consult as far as dealing with a melanoma diagnosis?

thanks in advance.


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Lisa13's picture
Replies 4
Last reply 10/29/2011 - 12:12am

A few days ago, the left side of my neck seemed slightly puffy and felt stiff from my jaw all the way down. It all went away and then I went to my surgical oncologist today and she said the left side of my neck felt fuller and there is a slight lymph node that is swollen. She said it was hard to know what it was because of treatment and could be an inflammatory response, but she's not that familiar with ipi.  She also said it would be odd for it to be melanoma because of where my cancer is and something about lymph node basins.  I told her melanoma could spread anywhere and she said this particular spot would be strange (she's a melanoma surgical oncologist).

Anyway, I don't know what to make out of any of this and have scans on Monday. Does anybody know if inflammation is possible with Yervoy?  After my 4th infusion (2 weeks ago), everything went wild a few days after - massive itching, upset stomach which was relieved by immodium and now this weirdness in my neck area.  My bloodwork was great 2 weeks ago, so I really don't know what to even imagine right now.  Maybe I'm having glandular reactions or something like that?  Or, maybe it's the sinus problems I've been experiencing- sinus pain, congestion, that it could be related to.


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

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NYKaren's picture
Replies 10
Last reply 11/2/2011 - 2:37am


Hi everyone,

I had brain MRI (all is fine) and CT of chest, abdomen & pelvis.  PET is scheduled for Monday a.m.

I requested copy of CT results and I'm a little worried:

Lungs:    Subcentimeter nodule at the right lung base is stable.  No new pulmonary nodules have developed.  Huh?

Pleura/Pericardium:  Stable posterior pleural thickening. Thoracic Nodes:  Stable 0.7 x 0.6 cm left cupraclavicular node.  Subcentimeter nodes are unchanged.  No developing adenopathy. 

As mentioned, I am having PET on Monday followed by visit w/Wolchuk on Thursday, I'm just trying to avoid being a nervous wreck all weekend.


Have a good one,


Don't Stop Believing

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nickmac56's picture
Replies 3
Last reply 10/29/2011 - 10:52pm
Replies by: BethA, o2bcheri, mombase

After discussing the pros and cons of a spinal tap for further diagnosis my wife decided to go with the docs recommendation and not do it. Even if the tap confirmed the melanoma was in there, it would not alter the treatment protcol she is on - which is a last gasp effort anyway. The chemo she is on, Abraxane, is one he really wants to have given a good shot at slowing or halting the melanoma overall. As it is, her blood counts were down yesterday, so she was only able to get a 1/2 a dose. The idea of doing a direct port into her spinal fluid (Ommaya reservoir) was discussed but quickly dropped.

She's doing relativley well on the Abraxane; fatigue and unsteadiness being the main side effects. Of course she wanted to know if the 1/2 dose would affect her hair loss - the doc wasn't too sure it would (i.e., he thinks it will still occur on schedule). 

What this all means for her symptoms is that we stay focused on treating the pain as best we can, while hoping the chemo has some effect. Her arm and shoulder pain are being well managed by the gabapentin (nerve pain reduction med) and increased steroids. Her lower back has really started hurting quite a bit more over the last several days. Unfortunately where she indicates it hurts, is in an area she has had tomotherapy radiation, and there can be no further treatment there. So it's pointless to scan to see if it's more cancer. He said it's possible the radiation is still working and could reduce the spinal tumors there - I think that's unlikely as it has been six week since the conclusion of the tomotherapy. So he's upped the dose of gabapantin and added another anti-inflammatory and pain med. We are still in the pre-morphine zone, so that's good, but if the chemo doesn't work that is where we are headed.

To top a lousy week off, today she has a brain MRI and we meet with radiation oncologist to discuss results and game plan. 


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

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Harry in Fair Oaks's picture
Replies 8
Last reply 10/28/2011 - 3:09pm

I'm well into the 6th month of the GSK BRAF/MEK study, taking the highest dosages of the 2 drug combo.  I'm happy to report that, as of the scans I had on Monday, all mets have either shrunk to sub-clinical size (i.e. cannot be imaged by MRI or CT) or (in the case of a couple of bone mets) seem stable.  The bone mets may actually be non-viable, but the damage they previously caused will probably always show on the scans.

Very few side effects to report - most went away after the 1st few weeks.  Apparently the BRAF/MEK combo results in fewer patient complaints than the BRAF alone.  And according to staff at the Angeles Clinic, so far they have not seen the dreaded acquired resistance to the combo inhibitors (that has been a problem with BRAF alone).

Best wishes,


Too ugly to die!

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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mom3girlsFL's picture
Replies 2
Last reply 10/27/2011 - 6:27pm
Replies by: JerryfromFauq, lhaley

...was NEGATIVE!!!!!!!  Doing the happy dance!  What a blessing!  Thanks to all the support and well wishers.  I am officially NED from last years disasters!  Amen!

Gonna "take a break" from here for a while but I'm sure I'll be lurking around a bit.  Take care everyone - (((HUGS))) and prayers always,



Yes, a girl CAN dream! LOL!!

Do not fear tomorrow, God is already there.

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cwu's picture
Replies 12
Last reply 10/31/2011 - 8:08pm

My father is going to get his third dose of Yervoy next Monday and so far it is so hard to remain hopeful this will work for him.  He has had side effects, some diarrhea, rash, chills, and major itchiness.  One of the reasons that it is so hard to maintain hope is because his lesions are cuteaneous, they are on his skin and we can see them.  Since starting Yervoy, he had a couple of lesions have dried up and fallen off but so far, they seem to multiply and get bigger every day.  They are also starting to move up his upper thigh area.  His leg is imflammed and swollen.  His oncologist warned us that while on the med, his lesions could get worse before they get better but it is so hard to have hope when all we see are lesions getting worse. My father gets depressed because he sees them getting worse.  Sometimes, I wish they were internal instead so we dont see them until the scans.  I try to focus on his ALC #s to keep my hopes up since they have gone from 1.58 to 1.98 after his first dose. I also read and re-read Vermont Donna's postings when I am down since she had cuteaneous lesions and is a complete responder.   


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jag's picture
Replies 14
Last reply 10/29/2011 - 7:59pm

40th MRI

All clear :)
New business going well,
wife is preggers,
I am a lucky man.

Feel guilty that things are going as well as they are honestly.

Insert Generic Inspirational Motto Here

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Steve&#039;s Gal's picture
Replies 6
Last reply 10/28/2011 - 11:38pm

My husband, Stephen,  was recently diagnosed with Stage III melanoma. He went through exculpatrory surgery on his knee, sentinal biopsy with a few nodes removed.

He declined to have all nodes removed from his groin basin. We were told that the next step would be Interferon. 

His oncologist stated that here in Canada that would be our only course of treatment, that there was nothing else offered. Have any other Canadians experienced this?

We decided to go with the wait and watch approach.  Steve went for his CT scan almost two weeks ago, we are expecting the results on Monday. I am really  nervous now. I was fine last week but now I am scared of what the scan will read. SO fingers crossed that it will come back NED.  

Anyhow, if there are any other Canadians that have been offered any other treatments or clinical trials or even if you could point me in the right direction. I just want to make sure we are informed on all decisions we make.

Thank you all so much, I am very grateful to be able to share with you.


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trishahimm's picture
Replies 11
Last reply 10/27/2011 - 2:52pm

Hi all,

I have posted here a couple times about my dad, I never did a profile. He had a melanoma tumor on the bottom of his foot and throughout his groin, removed in May. They had to wait for healing to start radiation on both areas and were supposed to start interferon after. He had long delays with healing and before radiation was done, he had several recurrences on his foot a month ago, further extending radiation and postponing interferon and postpong a scan out past the 5 month mark. Then within the last 10 days, he got 2 more on his foot, one in his other groin area, armpit and on top of his head. The Onc freaked and rushed to finally get him to a PET scan on Monday evening. We found out yesterday that he has almost 40 mets visible on the PET scan on his liver, spleen, bones, and 20 just in his lungs. They are going to do a different brain scan this week to see what is going on in there, not sure why.

The Dr. said he has maybe 2 months to live if he decides to enjoy what he has left, or that maybe he can get him a year with poor quality of life with some kind of liquid treatment. I am assuming this isn't interferon, because that is normally not stage 4 treatment right? My dad couldn't remember what he said. He is supposed to meet with the Dr tomorrow to make a decision about this, and we are not educated well enough, as Stage 4 came so hard and fast. My head is spinning.

My question, what are the treatments out there and the process at this point? My dad never asked for a second opinion from a melanoma specialist. They said they had a "tumor board" working on the case, and he felt that was enough, eventhough I insisted and pressured him to get a specialist. Now I feel like I just want to make sure we ask all the questions and mention treatments and make sure this dr knows the latest melanoma information. I have seen on the board here Yervoy, ipi,  IL-2, Zelboraf, Vemurafenib,Temodar, Ipilimamub. Which are used for Stage 4 and should be mentioned to the Dr. tomorrow? Any knowledge would be helpful, I am armed with nothing.

I feel like these Drs dragged their feet and postponed treatments and shot radiation on his foot for weeks and weeks while the cancer raced through the rest of him and now I don't trust them at all. Maybe I am trying to feel a sense of control of something, since this melanoma experience has made us all so powerless. Whatever the case, I feel like I need to do SOMETHING that might help, or at least know that the Drs are worth trusting with my father's life.



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nfumarolo's picture
Replies 10
Last reply 10/27/2011 - 7:46pm

I'm brand new to the site.  Extremely frustrated trying to find information and just found this site.  Best thing yet.  Our doctor doesn't know anything about ipi.  What happens after the 4 treatments?  The scan shows the largest tumor has shrunk and the rest remains the same.  Doctor said to wait 5 more weeks and come back for a feel test and bloodwork, but no mention of scans or any future treatment.  Said to call back if it grows.  Anyone out there who has completed treatment.  What are you doing?  Thanks!!!!

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MariaH's picture
Replies 8
Last reply 10/28/2011 - 5:44pm

Well, after waiting 2 hours for the radialogist to read the results of Dave's PET, we got the results.  Although Dave's mets in his chest did shrink by about 7mm, there are new mets near where the original LND was.  He has a new positive node, and the soft tissue mets have increased in size from approximately 8mm to 1.5cm.  His oncologist feels that the decrease in size of the mets in his chest was due to the radiation he had prior to IL-2.  Therefore, it was ruled that Dave was not a responder.  He wouldn't have done another round anyway.   The good news is that his liver and brain still look good, and all the mets seem to be confined to the "general" area of his original spread and in the upper right side of his body.

That being said, he is still taking 40mg of prednisone a day to combat the optic neuropathy.  Because of this, he cannot do any form of immunotherapy until he is off of them.  This excludes him from taking IPI or a possible anti-pd-1 trial.  Since he is B-RAF negative, this is limiting his options.

All is not lost however, as his oncologist has recommended Temodar.  I know response rates are low with this chemo and my first thought was that there had to be something better.  He handed us a study report of continuous low dose Temodar after unsuccessful HD-IL2, and it was promising.  If anybody is interested in it, let me know.  This was a study, not a trial (although there is a phase II trial going on right now using this protocol).   Of the 9 patients studied, 6 had "an excellect objective response to treatment which occurred fairly rapidly".  Two have finished the one year dosing and have complete responses that have been durable without further treatment.  And, I might add, these were heavy tumor burdens. 

The Temodar should be started within 6-8 weeks after finishing the IL-2, and is administered orally at 75/mg for 21 days per one month cycle.  The science behind it makes sense (feel free to chime in Jimmy B!). 

So, although not what we were hoping for, it could have been much, much worse.  We'll take what we can get and move on.

Best wishes to all the mel warriors out there,



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Anonymous's picture
Replies 2
Last reply 10/28/2011 - 3:01pm
Replies by: jag, W.

I had a Lobectomy in April 2011 for a Metatisised Malignant Melanoma stage 4. Primary was possibly an in-situ MM removed from my ear lobe in 2006 but that is speculation. No other primary could be found. I was not put on any treatment. I was due to have my first follow-up exam in August 2011 but in July I was experiencing some severe pain in my rib area on the same side as the surgery. Felt and still feels like a knife being jerked around inside me. The pain is not ongoing but comes in bursts but very seldom at night so generally I have a good night's sleep. Various scans were undertaken and the following were the results:

CT Scan of lungs with injection - pseudo tumor - no worries.

Oncologist not happy so full body bone scan - shows possible tumor on 7 / 8th ribs but this scan highlights all bone irregularities so the assumption is that rib damaged during lung surgery. Given a nerve block and pain tablets. No worries according to surgeon.

I wait 8 weeks, pain remains, go back and a very clear Scan of my ribs only indicates that I have a delayed rib repair. Blood count shows clean for cancer. I get referred to a Physiotherapist. They conjure all sorts of reasons for the pain and I get some very aggressive treatment and am pretty well bruised. It seems nerve ends trying to heal and masses af scar tissue account for most of the pain. After each visit new pains develop and they deal with these. I have now had 5 weekly treatments but the basic pain in the same spot of a knife that also feels like a very bad stitch remains. I am not really responding - or am I?

The bottom line is this - is there anybody out there that may have experienced similar issues and if so, what was the diagnosis? Is it something that will go away over a period of time after the operation, or not?

My other question is - apart from a bone tumor (which, I understand, is painful but thank God, it appears not to be) is there any other Metatisised MM that is painful (i.e. a tumor say behind the ribs like where I am experiencing the worst of the pain) because it is pressing a nerve or something. Is this possible?

My issue is that they did not do a PET Scan as I thought they were going to do and it freaks me out that maybe there is a painful tumor inside me that we are not aware of, which also did not show up on any of the scans they took.    Please help me with an answer so that I can put this to bed.

I see such wonderful responses in this bulletin board and really trust that someone out there can help me.

The sun shines at the dawn of each new day even though it may not always be visible.

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