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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Dear MPIP Community:

We have been contacted by Schlesinger Associates (www.schlesingerassociates.com), a market research company with 15 offices around the US, regarding an interview opportunity that might be of interest to you. 

They are looking for Stage III or IV melanoma patients anywhere in the U.S. The interview will be a 1 hour telephone interview. Participants must also have a PC or laptop with internet access. Participants will be compensated $150 for their valuable time and input.

If you are interested in participating, please contact Alia Khan at Alia.Khan@schlesingerassociates.com by May 16, 2017! 

Thanks and have a wonderful weekend,

Shelby - MRF

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Julie in SoCal's picture
Replies 7
Last reply 5/13/2017 - 7:39pm

Good morning friends!!

Just want to let you know that I'm home from the hospital and Larry the Lung Tumor has been evicted.  

For the most part the VATs lobectomy was straight forward and I had no complications. I had an amazing surgeon and all of the hospital staff were wonderful.

Yes, it hurt.  Especially the first two days. But that's what good drugs are for. And the hospital staff were on top of it.  My pain was well managed.

Yes the chest tube sucks...literally. And while it's in it feels like you've got someone stabbing you in the chest.  But once it's out, everything is easier- breathing, coughing, walking, everything!

So now I'm just waiting for the path results. And of course I hate waiting.  Hoping that this is the end of the lung cancer journey and I can get back to kicking Mel's butt.  She's had it too easy recently.

Thanks! And Shalom to all of you!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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meltedtime's picture
Replies 1
Last reply 5/12/2017 - 1:06pm
Replies by: Anonymous

I was diagnosed with stage 4 melanoma on March 24th. My oncologist wanted me to immediately start the Braf treatment as my tumors were typical of melanoma with the Braf gene.  He said there was no risk, it would either work or not. Side effects would be the same regardless. 

In BC the oncologist have a panel to review drug administration and approve variances, such as providing me with the meds prior to final test results. One doc on the panel delayed the approval as he believed it could potentially increase the size of the tumors if I wasn't Braf positive. My doc overruled through appeal and I started the meds. Thankfully, only for 1 week. I don't have the Braf gene. 

The meds gave me a massive headache within 2 days. And my tumors grew visibly. 7 days wouldn't have made much difference had we waited. Now I have further growth as a result of my oncologists decision to push. 

Make sure to get a true diagnosis before taking the Braf meds.

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AliCat61's picture
Replies 2
Last reply 5/13/2017 - 9:21pm
Replies by: RitysMom, betsyl

The good news....Roy was able to get combo Yervoy/Opdivo treatment on Monday. Still no serious side effects .  No fever since his pneumonia was treated. We switched oncologists (same practice, different doctor) and we like this one better. We both prefer a doctor who uses his stethoscope for more than decoration around his neck. We're going to attempt once more to get a port placed to make the treatments easier.  We tried once already, but that's when we found out he had pneumonia, so it was a no go.  The port insertion is scheduled for May 28th.  He is scheduled for his 4th combo treatment on May 29th. 
     The not so good news...We met with a pulmonary about his specialist about his pneumonia/asthma/breathing issues. I don't know what all of this means, but it doesn't sound good.  Quoting from report, "Lungs appear mildly hyperextended with prominent reticulonodular pattern in the mid and lower lung zone. This could represent changes related to chronic interstitial lung disease. Possibility of acute infection or inflammatory process can not be excluded. A less likely consideration would include nodules related to metastatic disease. Chest CT scan recommended to assist in diagnosis. Possibly calcified gallstones,"
     So, next Wednesday, May 17th, CT scan, meeting Friday the !9th to discuss results with pulmonary specialist. We are so blessed that other than the shortness of breath he's feeling okay. The tumor along his jawline (in parotid gland) has shrunk very significantly and can barely be felt.Until they tell us otherwise,  I  choose to believe that if the largest tumor is shrinking then the tiny spot on his lungs should be shrinking as well, and that the current problem with lungs is non-cancer related.   Prayers are much appreciated.

     This is such a roller coaster. I am so grateful that he hasn't experienced any severe side effects and with the tumor visibly shrinking, I want to believe he's going to be ok and be with me for many years to come. But then I get news like this and it literally knocks me to my knees, forcing me to face the fact that despite all of our very best efforts, it may not be ok. I know I have to be strong for him, so please pray for me to, that I can keep up a positive and brave front even when I'm not feeling so positive and brave, It means so much that I can come here to unload and know that y'all understand. Be blessed! I'll post an update after we meet with pulmonary specialist next Friday.

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Nal64's picture
Replies 1
Last reply 5/12/2017 - 6:18pm
Replies by: Bubbles

 Usually I am just a lurker here on this forum. I follow some people stories closely and look up to them to get information. Celeste, Paul,  and Josh's posts  got me through some really difficult times.  My husband Eric was diagnosed at stage IV  in 2014. His disease remained  regional during yervoy, keytruda and a cavatak trials.  In January a CT scan confirmed mets to his lungs.   He has been out of treatment since then due to fighting with the insurance company to go out of network.  Now Eric has to make a choice. He is being seen by Dr. Luke at University of Chicago  and is about to start a trial that we are not really hopeful about (MGA271 + yervoy)   But it is the only one available right NOW through U of C.  He is otherwise healthy and continues to work full time.  My question is: before starting the trial should we have the large tumor in his shoulder removed so they can start  using it for TIL ?  Is TIL even worth it?  Will NCI or M.D. Anderson accept  a fresh tumor removed by another institution?   If they can, it would save us a lot of time and a trip to Texas.   Has anyone had any success with the glembatumubab trial? ( ideally, it's the trial we wanted to be in)

 Has anyone else had success in getting insurance to pay for one trial while undergoing a different one?   If so, how? We have an HMO through BCBS   And cannot change to a PPO until November. Even then both MDA and NCI  would be considered "a non-participating hospital" and we would have to pay 40% of any treatment.   Anyone who has had some success in dealing with the insurance companies, I would love to hear from you!   Thank you in advance. 

 

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luda2259's picture
Replies 1
Last reply 5/12/2017 - 8:23am

Today 5/11/17 my dad had one large excision on his back and bilateral axillary lymph node biopsy. Two moles were excised, he was supposed to have two excisions but the doctor said since they were close enough they did one long excison. The wound on his back was bleeding through the dressing and there is swelling. We figured this is normal, he was afterall cut into. The instructions to go home were to leave the dressing on for 2 days (until ok to shower), remove steri- strips 5 days after surgery, keep any dressing that are on your skin clean and dry. 

A few quesions ..

1. The bleeding is normal right?

2. Since its bleeing through, we should change it? 

 

I felt the instuctions are kind of vauge, dont want to do anything wrong or put him at risk for inection. 

 

Background: shave biopsy April 17th, path. report April 21, surgery May 11 . 

Amelanotic Melanoma, Breslow thickness 3.85mm, Clark Level IV, ulceraton present (approx 1mm) 

Also, the path report says the pathologic stage is : pT3b , does this mean he may be a stage 3? I know they wont know for sure unitl results from the SLNB come back. 

He has not has any scans done yet. 

 

 

Any input in helpful, Thanks, 

 

Luda

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matthew111's picture
Replies 13
Last reply 5/15/2017 - 10:32pm
Replies by: Anonymous, matthew111, Jeff_in_FL, AliCat61, GeoTony

Are nodular melanomas raised or are they flat?

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Sdsmith44's picture
Replies 11
Last reply 5/16/2017 - 4:43pm

I finished ipiluminab 10mg in March with mild side effects (mucosal inflammation and bleeding, swollen lymph nodes, swollen tonsils, shooting temple pain) then two weeks later developed hyperthyriodism. After a series of test it was determined it was Graves' disease. My ENDO said he has never came across in his medical literature and connection between ipiluminab and graves. So now I'm at a decision point to treat the graves. I'm considering radioactive Iodine treatment to kill most of my thyroid. This is all because anti thyroid medicine would make me non deployable in my job field in the Marines for two years and my job means everything to me. Any other cases of graves in this forum? Any thoughts?

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I recently completed a course of 30 grays in 5 fraction for an aggressive brain met.  Has anyone had this dose and did your hair grow back?  Did you experience any long term side effects from the high dose?  Thanks for your support.

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Cindyco's picture
Replies 4
Last reply 7/7/2017 - 3:43pm

So after 2 cycles of Abraxane (which my mom tolerated pretty well and didn't even go bald), we just found out that my mom progressed again.  She now has four lesions on the liver, and some increased lung nodules.  Dr. Ribas at UCLA recommended that she start clincial trials, but due to her previous toxicities to immunotherapy, the only trial that she qualifies for at UCLA is for RGX-104. 

We then went to Dr. Hamid at the Angeles Clinic and he offered us IMCGP100 (which is offered at UCLA as well, but I think Dr. Ribas is more conservative about what he offers us).  It's currently being amended to allow for mucosal melanoma, but it has had some good initial results for ocular melanoma.  We do have to wait for the trial to be officially amended (does anyone know how to find this out?), which Dr. Hamid hopes will coincide with the washout period for the Abraxane (2 weeks to go).  Dr. Hamid has already cleared my mom's previous toxicities with the medical monitor, and he doesn't think it will be an issue (he was even willing to try another dose of Keytruda).  Dr. Hamid has really been an amazing advocate for my mom and we are so glad we are doing the trial with him.  If anyone is in this trial, I'd love to hear more about their experience. 

Dr. Ribas recommended that we try Sloan Kettering and MD Anderson for other trial options, and we are in the process of looking into those just in case IMCGP100 becomes not an option for us.  Interestingly, he told us not to volunteer too much information about her toxicities when she goes elsewhere. 

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KatelynAmber's picture
Replies 4
Last reply 5/15/2017 - 3:30pm

Hi there everyone, I have been having some symptoms and was wondering what you guys think. I am a sophomore in college and have not had any previous cancer history. Both of my parents do have many freckles and moles though. I also have multiple moles and freckles on my body. Probably around 50 per arm or so. My first symptom was two moles on my neck raised and were a little itchy. I didn’t know why they were like that so I just picked at them until they were down to their normal size (I know, I shouldn’t have done that). A month to a month and a half later I started bruising very easily. I would wake up and have 4-10 bruises between my arms and legs that I did not know where they came from. Then two moles on my right arm raised and became inflamed a couple weeks ago so I watched them closely. When I touched, them they were more sensitive than my other ones. They were red around the mole too. After two days, mole number one started to have a dark brown spot that covered about 20% of the mole. The two moles then began to form a scab. I made sure not to touch or pick at them but after about 3 days, mole number one was fully a scab and mole number two was about half a scab, and half still the mole. I went to see a doctor on campus and she thought I was just picking at my arm in my sleep (very unlikely) and she picked off the scab. Under the scab was not a mole anymore! It was like the mole just fell off. The doctor then found a mole on my back that was brown but had a black spot in the center. She was concerned about that one more than the ones on my arm. Besides the bruises and the scabbing of the moles, I feel normal. I was wondering what you guys think this could be. Thank you so much for your help!

Katelyn Gallun

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Remi's picture
Replies 11
Last reply 5/12/2017 - 4:01pm

Hi, I just wanted to share my worries with you to see if anybody else has experienced this or if it's just health anxiety. 

I had invasive melanoma removed from the very top of my left arm 3 years ago which was in vertical growth phase so I was told that I had 5% chance of reccurrence (I know that very good and I'm grateful).  I was told I had to have check ups qtrly for 2 years however I stopped after 1 year. (could be something to do with having insurance at the begining but then losing my job with the stress.  They are not as keen to see you once your not paying) I am in Jersey Channel Islands. 

For months now, maybe even a year, I keep aching in that armpit and when I lift my arms above my head the left arm pit looks lumpy compared to the right.  

I showed this to a doctor and she she just asked my to raise my arms and said "oh yeah it does look puffier than ther one but in the best of faith I would say its probably ok" and that was it!  Im not freaking out about it or anything but it's on my mind. 

I am not sure how a lump in the armpit would look or feel.  If I run my hand over it with my arm up its lumps but I put my arm down and I can't feel any. 

Can anybody offer advise?  Thank you in advance x 

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Kms's picture
Replies 10
Last reply 5/12/2017 - 7:48pm

I was just recently diagnosed stage 4. Had surgery to remove melanoma from my lung. Was referred to a general oncologist who gave me no hope. Currently looking for specialist in Chicago area. One referral was to.Dr Clark at Loyola. Scared and getting lost in mass amount of information on clinical trials

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Christine.P's picture
Replies 23
Last reply 5/16/2017 - 11:02am

So I just found out that I do have the BRAF mutation after my initial diagnosis/testing in 2015 said I was wild type. Because of this, I never really paid much attention to information about the mutation since I did not have it. Well, now I have all sorts of questions. My doctor is recommending Tak/Mef since I have recently failed ipi/nivo followed by nivo (four new tumors in my leg, hip, and lower back). 

I tried searching this site for posts related to BRAF and Tak/Mef, but found it hard to wade through all of it. Does anyone have links that I might find useful? I have to admit I've been reading about side effects, and - while I know they are worst case scenarios - I am a little scared. I had few side effects with just nivo (mainly fatigue, headaches, and achy muscles and joints) so I'm hopeful I will also suffer few side effects with the new drugs, but the chances of new cancers, heart failure, etc. is pretty overwhelming. 

If anyone would care to share their own experience with Taf/Mek, I would love to hear how you fared on the drugs. 

Many thanks for your continued patience with my questions as my disease has changed and progressed.

Christine P. 

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Lunakitty's picture
Replies 4
Last reply 5/10/2017 - 5:08pm
Replies by: Jamie1960, Lunakitty, Anonymous

I had a mark on my ankle that met the abcde criteria. It wasn't a mole though it looked more like a birth mark. The doctor said it was very superficial whatever that means. I had a baby in October and looked back on pictures of my swollen feet and the mark was a very very faint brown spot, hardly noticeable. I don't know when it started to change but my son is 6 months old now and it's like a brown and pinkish birthmark looking thing. It's not raised at all or bleeding or anything. I'm scared as hell :( I just want to know if there is hope that it could be something else.... my biopsy is takin so long..

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