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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Steve'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.

Karrie

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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.

Thanks,

Trisha

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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,

 

Maria

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Anonymous's picture
Anonymous
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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nickmac56's picture
Replies 2
Last reply 10/26/2011 - 11:47am
Replies by: Anonymous, sharmon

My wife's arm/shoulder/neck pain is being managed with steroids and gabapentin for now. She had a nerve conduction test with the neurologist on Monday and they didn't identify any tumors outside the spinal column. Now he wants to do a spinal tap to determine presence of cancer cells in the spinal fluid. Apparently cancer cells swimming in the fluid can affect the nerve roots and cause the pain. Given that she has already had brain tumors and cancer of the lower spinal column (epidural) this would not be a surprise. We meet with our doc to discuss next steps tomorrow. Given that she is already on chemo he may say it doesn't make sense to have the spinal tap because that would be the treatment anyway. She also has a brain MRI Friday, so he might want to wait to decide until we get those results (same day). 

Is a spinal tap as painful as legend says? My wife is getting very weary of pain. Anybody else had experience with cancer showing up in the spinal fluid and can tell me what to expect as it progresses?

Nick

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

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mombase's picture
Replies 6
Last reply 10/27/2011 - 11:29am

I was so excited to see this information and I wanted to post here in case anyone would like to see this interview:

 

The 700 Club will air an interview of Joe and Terri Fornear about Joe's miraculous healing from cancer on Wednesday, October 26. Since times and channels vary, check your local TV listings here:
http://www.cbn.com/700club/ShowInfo/Schedule/schedule.aspx

I just finished his book and his recovery from melanoma is quite miraculous. Can't wait to see it!

Cristy, Stage IV

Getter done!

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DonnaK's picture
Replies 13
Last reply 8/7/2013 - 9:22am

My husband began interferon treatment on Monday.  The first infusion hit him almost immediately after treatment and he had serious chills and a fever, but managed to sleep it all off and get to work the next morning.  Today was round two, and while he didn't get the same chills as yesterday, he has pretty much been incapacitated since we got home from the hospital.  So, I guess I'm wondering if this is par for the course, or if his symptoms will subside a bit.  I think we can take this for a month but, if this continues beyond that, it will be as if we lost a year of his life where he could have been otherwise healthy. For past interferon patients, what is life like beyond the first month?  Are you generally able to live your lives, or do you feel like your life is on hold until treatment is complete?  

I am so grateful for any responses. I know this is a personal decision, and I'm not looking for people to bash interferon. I guess I'm just looking to see if there is hope around the corner.  At this point, I'm having a hard time believing this is the right decision for us...

Thank you.

Donna

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Hi All,

Well, I'm writing to you from my bed at UCI Medical Center in So Cal.  After a couple of weeks of increasing feelings of yuckiness (nausea, chest pain, fatigue), I finally went to the ER where CT scans were done on my chest and brain (due to a comment I made about loss of coordination in my right hand).  Scans revealed tumors in my brain and one in my chest cavity.

Since then, a brain MRI was conducted revealing between 8 and 11 tumors, only 3 or 4 of substantial size (approx 2cm) with the rest being 1 to 2 mm.  I've also had a spinal MRI but no results yet and they are scheduling a lumbar puncture for today...I'm hoping the lumbar puncture means no spinal tumors showed up, otherwise why look for microscopic evidence?

The tumor in my chest is 4.4 cm and there is an abdominal lymph node which looks suspicious...not to mention that spot I've been feeling for a couple of weeks in my left groin.

So....none of this showed up in scans on 9/6/11, but is definitely present now.  Preliminary recommendations are (1) whole brain radiation; (2) gamma knife on the larger brain tumors, and (3) systemic therapy likely Yervoy.  Concern over yervoy is TIME.  If we can't get ahead of the brain tumors by using the yervoy to shrink the body tumors, we may need to switch gears partway through the treatment according to the oncologist leading my team.  He has calls out to colleagues all over the US to get multiple opinions and experiences in cases like mine.

Any thoughts or contributions anyone can make are totally appreciated!  This all has happened so fast...I was just trying to wrap myself around a IIIc diagnosis so I really haven't done a lot of stage 4 research.

Many thanks for all of your input!

Jacki

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NYKaren's picture
Replies 7
Last reply 10/28/2011 - 6:50am
Replies by: MariaH, NYKaren, King

Hi all,

I hope someone here might know what this is:  (I have scans this thursday night and PET on Monday, so I'm quite worried)

I feel a pain and a golfball size lump, palpable, just to the right (my right) of my belly button.  My measurements might be off 'cause I had tram-flap reconstruction following mastectomy so that area was moved around quite a bit.  Also, there is mesh from hernia repairs just underneath the lump

Does this ring a bell to anyone?

many thanks,

karen

Don't Stop Believing

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Jamietk's picture
Replies 6
Last reply 10/25/2011 - 8:30pm
Replies by: jag, JerryfromFauq, NYKaren, triciad, Anonymous, ValinMtl

I posted in August that I was at my 6 year diagnosis anniversary. I had my checkup at MD Anderson yesterday and am happy to report I am 6 yrs (and 2 months) NED from stage IIA. I hope this gives hope to some of the new early to mid stage warriors. Prayers to all for the continued fight of this beast.

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FormerCaregiver's picture
Replies 1
Last reply 10/27/2011 - 11:11am
Replies by: NYKaren

Undoubtedly, the process of having regular scans is something that can make one very
anxious. Here is a simple relaxation technique that might make it easier to cope with
scan anxiety (or scanxiety):
http://www.bbc.co.uk/health/emotional_health/mental_health/coping_relaxation.shtml

This basic method of meditation could also be beneficial:
http://www.bbc.co.uk/health/emotional_health/mental_health/mind_meditation.shtml

Hope this helps.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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deardad's picture
Replies 3
Last reply 10/25/2011 - 5:21pm

Hi just asking if there are any durable responses to Zelboraf/Vemurafenib? I know Dick is doing well at 18months now, is there anyone else out there doing this well? 

Thanks in advance

Nahmi from Melbourne

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Lisa13's picture
Replies 4
Last reply 10/25/2011 - 6:38am

Does anybody know if Yervoy can cause lymph nodes to inflame?  I felt some tenderness in my lower jaw and underneath the jaw the other night and havn't stopped touching it.  The left side now looks a tiny bit swollen and when I touch the area, it feels tender all the way down, like a muscle.  There are no lumps or bumps, just a puffy feeling all the way down.

My Dr. doesn't seem overly concerned, but has ordered a head and neck CT when I get my scans on Hallowe'en.  I just got over a cold and have some slight fullness in my ear, so it could be an infection. Just started some penacillian, so we'll see if things get better in a few days. I'm trying to keep in mind that my immune system is reacting, so it could be the lymph nodes responding.

Anybody have any idea?  I know it could be absolutely nothing related to melanoma, but it's also hard not to panic. 

Lisa

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

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MariaH's picture
Replies 8
Last reply 10/26/2011 - 4:04pm

Dave goes in for his first set of scans tomorrow to see if he is a reponder to IL-2.  We are certainly hoping he is, regardless of the steroids he has been on.  Unfortunately, after they started weaning him off the steroids when his vision returned he lost it again.  Since then his vision comes and goes, seemingly corresponding with the steroids and physical activity.  He has only worked one week since September, and it's driving him crazy.  He was hoping to be able to have some normalcy in between treatments, but I guess that may have been asking too much.

So here's to hoping that he's a responder, and maybe he can take a break for a bit.  Another round of IL-2 is out of the question.  He said (and I support him) that he will not risk his eyesight.

Best wishes to all of you,

Maria

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