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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Annabeth's picture
Replies 3
Last reply 2/2/2013 - 10:05am
Replies by: Phil S, jmmm

My dad has just been diagnosed with Stage IV MM.  He had a mole on his chest removed last year.  They removed a lymph node from his armpit a couple of weeks ago that had mm.  His PET scan results show hot spots on his liver and bones.  I'm trying to not read too much online because everything sounds so doom and gloom.  My biggest concern is telling my 10yr old daughter that Grandpa has cancer.  Since she was born they have been inseparable.  They are bffs.  She's a bright girl and can take the truth but how do I tell her?  I don't want to scare her I just want her to understand what is happening to Grandpa.

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buffcody's picture
Replies 3
Last reply 2/2/2013 - 9:29am
Replies by: buffcody, awillett1991, POW

I've had metastases to the lung and brain so far. All have been treated or removed.   Just had a PET scan done yesterday and won't see my oncologist for my results till next Wednesday, but an "inside source" who got a look at my scan report says that there is a suspicious marble-size tumor on my left hip accompaied by bursitis.  Anyone know anything about mets to the hip?  I don't even know if they are talking about the hip bone right now. I'm so bad with anatomy that I am not sure whether when someone tells you that something is on the hip that means the hip BONE or not? 

Not happy, of course, with the presumed news. I've been on ipi since October 30 with fourth infusion over three weeks ago.  No other body mets supposedly when I went on ipi and the brain mets were zapped 7 weeks in.   Am happy there was nothing suspicious besides this showing up in my first PET in 3 1/2 months.  I have had left leg pain for a few months, before the last PET scan in October, that I was receiving physical therapy for and baffled two therapists.  But why no sign of this tumor before the last PET scan? Anyway, I won't jump to conclusions but am interested since I know what I know in learning more.

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Mickey n Jo's picture
Replies 3
Last reply 2/2/2013 - 1:20am

Saw Dr. Pavlick at NYU on Monday, and due to the mixed results on the last scan, she suggested my husband stay on Zel at 3 and 3 until we get results of his next Pet/CT in another few weeks.  She also felt that this would give him a little more time to build himself up, because in her words, ipi is no "walk in the park".  So far, he's gained a little weight (about 3 lbs) and is feeling better than before, so we're thankful for that. Asked her about the 4 weeks on and 2 off with Zel, but she didn't seem to be in favor of it, as long as the dosage was tolerable. So for now, we will just take each day as it comes, and pray that the next scan will show either improvement or at least stability. Thinking of, and praying for everyone on this board.

                                                                            Jo

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dolphin5's picture
Replies 8
Last reply 2/1/2013 - 11:02pm
Replies by: kylez, POW, Tamils, dolphin5, Phil S

As I stated before my wife is stage IV with four tumors.  Three have been removed, Breast, lung and buttocks.  Leaving one in her neck with a watch and wait.   She just completed her blood work and PET in preparation for her doctor appointment at Kaiser Riverside.  Here are our questions.  #1 Does your cancer stage change after a tumor/tumors have been removed?  #2  And does the cancer stage determine which type treatment you would receive or is it the location of the tumor or both?  We would like to thank those of you that replied to our post.  We have just trying to find our way.   

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shep's picture
Replies 5
Last reply 2/1/2013 - 8:43pm
Replies by: Janner, shep, CarolA

new information on my daughter. she has had 6 more nevi removed, 3 were positive but not malignant. she is now being diagnosed as having dysplastic nevus syndrome, more nevi to be biopsied. still no WLE or SNLB (scheduled for Feb 7) however, with this new diagnosis, should we be looking at a clinical trial? there is one being done and actively recruiting at 3 locations near us. 2 in Chicago at Rush and Northwestern. another in Peoria (even closer) at OSF St. Francis. the trial # is NCT00297895. it looks as though this decision must be made prior to a WLE or SNLB which would be performed at Peoria or Chicago locations and not at our current appointed surgery. Please let me know about this trial, as much of the terminology is foreign. 

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sjl's picture
Replies 2
Last reply 2/1/2013 - 6:01pm
Replies by: Josh, Ali

My husband had his first round of Yervoy on Tuesday after carbo/taxol stopped working.  He felt fine yesterday and worked a long day.  Today, he was totally wiped out with fatigue just as he was on the second day after he had the chemo.  But, a tumor that popped up fast last week (to about 1/2" diameter) on his neck feels different today.  It feels softer and I really think it is a bit smaller.  Has anyone else had this fast of a response to yervoy?  I'm sure hoping the yervoy is kicking in already!

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I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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Anonymous's picture
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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awillett1991's picture
Replies 3
Last reply 2/1/2013 - 11:04am

Was just wondering how you, Zel, and prednisone are all getting along. I tried to taper from 7.5 mg to 5 mg but it didn't go well at all, so back to 7.5 mg now. I'm so messed up still from Ipi I guess. Anyway, knew you were hurting and was just thinking of you. Hope you are feeling better.

Amy

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lrkg1234's picture
Replies 16
Last reply 2/1/2013 - 10:40am

Wow what a week.  We learned that my husband Scott's IL-2 treatment did not work, he got a stomach tube for feeding because of his esophageal tumor and then learned that he has 7 small (under 2 mm) brain mets and needs to be treated with whole brain radiation.  He had already had one small area treated with stereotactic radiation.  Pretty hellish week. Feels like we have been around the world a few times and it's seriously been about a week.

So, that was obviously depressing news.  The good news might be coming soon hopefully.  I was googling like mad after hearing about the whole brain radiation and read someone's post about undergoing whole brain radation and IPI at the same time.  I had no idea this was possible.  It's supposed to possibly have some type of symbiotic effect and perhaps create a better overall response than IPI may do on it's own.  Thank God for the information from other melanoma patients!  The combined information from patients has been equally informative as any doctor has so far. 

If all goes well this combination therapy  will be the new plan of attack.  The idea came from this board and on the the Ogler Blogspot.  This is what his (Peter Ogler) doctor's had suggested for him. He did it and is still alive.   I hope to be able to connect with him.

The oncologist and radiation oncologist have agreed to go forward with the plan as long as the insurance works out and the blood tests come back OK.  Scott had his first radiation treatment today, there will be 14 total.  He may begin the IPI as soon as this Wednesday (2 days from now!)

We know this won't be an easy road, but it's a relief to be able to begin treatment sooner than later. I thought it would be necessary to treat the brain first before trying anything else.  It's awesome to possibly have the chance at trying something new.  Whole brain radiation and IPI both have their risks, but what is the alternative??  The brain issue has to be addressed. 

The radiation oncologist researched the idea for us after we suggested it.  He called some researchers doing a trial in Pennsylvania using IPI and radiation together.  They were combining the WBR with IPI.  They have not had any overwhelmingly negative side effects from combining the two and thought it's a combo worth investigating.

My prayers are with all who are going through this.  It's a relief to have other people that know what is going on.  It's too much information for the average, uninvolved person to digest.  The education and support from this website is a true gift.

Lisa (Scott's wife)

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shep's picture
Replies 5
Last reply 2/1/2013 - 1:33am
Replies by: JerryfromFauq, shep, POW, Janner

My daughter's biopsy came back as melanoma 1/22/13.  Her dermatologist told her it was 2mm deep but had her schedule a surgery to remove more with a surgeon. This procedure is to take place 2/7/13 along with a radioactive 'tracer(?)' test, I guess, to find out if it has metastized? Did the dermatologist ask her to see a surgeon because it could be deeper, or is this just a normal practice? Her appointment today with surgeon left us with more questions. He will be taking a 'diamond' tissue removal instead of 'circular'. This has no meaning to us, and she has not been 'up' to asking questions yet... thanks for any help!!

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Greg.R's picture
Replies 9
Last reply 1/31/2013 - 10:27pm

Hello ,

I am a Stage 4 pallative melanoma patient , I was intially diagnosed with the disease back in 2006.

My host site is behind my left knee which required extraction surgery.

I subsequently relapsed in 2007 ( left groin ) , 2009 ( right temple ) & 2010 ( right temple again ) these relapses all required extraction surgeries.

In August 2012 I discovered a new growth in my abdomen , after Ultrasound & CT scans I was informed that this was indeed a relapse.

Further investigation led to the dignosis that the metastasis had spread to the heart , lungs , back , brain and chestinal lymph nodes.

I was informed in September that my life expectancy is less than 12 months.I had extraction surgery on the abdomen in November.

Test results showed that I was positive for the BRAF mutation.

I began the BRAF clinical trial on January the 14th.

Since I began the BRAF  I have been enduring extreme symptoms that my oncologist does not feel are being caused by this treatment.

Symptoms have been as follows :
- Internal chest and back pain.
- Pressure from the brain feeling like it is pressing against my skull.
- Blackouts. Without warning ranging from 15 - 90 minutes.

- Uncontrollable vomiting.
- Hand Shaking / Tremors
- Nausea and Dizziness.
- Constipation.
- Fatigue.

The pain level have consistently been in the 7-8 pain scale range , decreasing to 4 - 6 though never disappearing completely. Pain is present 24/7. I have recently had my med's reassessed and have been been prescribed : Morphine 4 times per day ( 3 oral & 1 injection ) , Fentanyl 50gm slow release patch ; Metoclopramide 1 x 3 per day ; Maxolon injection 1 per day ; Dexmethsone 4 per day , plus 2 other medications to assist with the constipation.The constipation has increased dramatically in the last 5 days to the point where I am getting no relief from the medications that are supposed to assist  with this.

As you can well imagine I am at a loss as to what to do. This new drug program has been of some assistance , yet , the continual pain drowsiness   fatigue and now the high level of constipation related to taking so many medications is proving to be an enormous barrier in attempting to lead a "normal" life.

Before beginning the BRAF I had researched and found that the most participants only experienced sore joints , fatigue , skin irratations , rashes etc

i.e. none of the type of reactions I am getting.

Can anyone assist with any advice as to which direction I should take from here or any alternative therapies that may be of assistance ?

Thank you for taking the time to read my post and I look forward to your feedback.

Greg

FIGHT LIKE HELL !!

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/31/2013 - 10:23pm
Replies by: POW, MeNDave, Anonymous

I know lots of folks didn't know they had brain mets until a scan showed them.  

For other folks - just curious as to what type of symptoms they had before they showed up on a scan.  

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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