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
Anonymous
Replies 8
Last reply 1/19/2017 - 5:52pm
Replies by: Anonymous, _Paul_

So short story, hubby stage IV, did 12 opdivo treatments that ended april last year.  Scans have been clear. Today, results of scan show "Activity", the doctor calls in it, in the nodes by the pancreas and activity in the intestines.  So need tests for those.  The doctor who is usually lighthearted was very serious in her speach and body language. 

Thoughts?  I dont know how to feel...

R

Bin

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Shaneswife's picture
Replies 12
Last reply 1/18/2017 - 3:06pm

Just wanted to share that my hubby's ldh came down from 1930 to 1100 in just one week of being on dabrafenib and tramentinib. Looks like he might be a responder.

Janis

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SaraBear88's picture
Replies 5
Last reply 1/18/2017 - 4:59pm
Replies by: SaraBear88, Aloha14

I finally saw a derm today and he removed two lesions via punch biopsy . I had the numbing shot at 3pm est to my finger for one lesion and it is now 12 am est and it's still just as numb as it was at 3pm . Is that normal ?

Sara Jackson

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Rita and Charles's picture
Replies 7
Last reply 1/18/2017 - 1:32pm

I haven't been on the site for a while, for a combination of reasons. First was that my husband was doing well - I took time off, the braf/combo showed significant success to a PET scan that showed no activity...so really hopefully NED.  That was in November, and then we went away for a month....being back, things started to change - fatique, continued weight loss, and use of medical maijuana as his medicine.  Our PET scan since our return was yesterday, and our oncologist called last night to say they found significantly life threatening results - he called my husband, who was totally confused. Then we get a call confirming an 11am meeting with a radiation oncologist, then we meet with our primary oncologist tomorrow.  The Radiation Oncologist  showed us the PET and the brain was "littered" with white spots, all over - he wanted an immediate brain mri - but with scheduling we got a 7:30am CT scheduled , then we go back to the radiation oncologist for results and "mapping", then back over to our primary to see what the heck about the other tumors that were found.  The radiation oncolgist wants to do 10 days of whole brain radiation, 10 minutes a day.  He said charles will lose his hair, no biggie and fatique - but then?  What happens then?  What happens with the other tumors?

For 9 months he was on BRAF, and was sick every day - he isn't going to jump back into potential daily hell......

Can anyone tell me about whole brain radiation - they feel it is urgent to do this at once? Thoughts...

 

The second reason I stayed away was I was fearful of seeing "cyber friends" not doing well.........it felt too personal to hear bad stories.

 

Rita

Rita

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JoshF's picture
Replies 23
Last reply 1/20/2017 - 2:44pm

So brain MRI was stable. That means TIL would be a go. I'm having 2nd thoughts. Is TIL my best option at beating this or getting into trial like Paul is looking at. I guess I'd like to ask Paul if he'd do TIL again. How tough was it? It's tough decision because it's a long time away from my kids.... What are response rates...is the juice worth the squeeze? I'm really torn...somebody give me some guidance.

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/21/2017 - 12:13am

I am stage 4 metastatic melanoma. Was diagnosed in 2014. I have been NED, but last scan showed in lungs. I will start IL2 next week. Any information would be great.

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NSNewf's picture
Replies 4
Last reply 1/17/2017 - 3:57pm
Replies by: NSNewf, AvaL, Aloha14

Discovered lesion getting hair cut from different barber. Got it removed November 1, 2016. Initial pathology was inconclusive and 2nd came back positive.

1.7mm

IV

> 1 Mititic rate

No ucleration

Margins clear.

CT scan had no convincsing metastic activity.

Found the predictor on teh Sloan Kettering site that said I had a 8% chance of sspread to SNB.

Had WLE and SNB on Jan 4, 2017. Just got results.

WLE negative

SNB Postive for microscopic deposits of mestactic malignant melanoma - F**K!

I have used that word before but now I really mean it.

Being referred to ENT for CLND of neck and Oncology.

I  am in Canada so care is free but wait is issue.

I was convinced mysself it had not spread.

 

    

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Aloha14's picture
Replies 2
Last reply 1/18/2017 - 1:16pm
Replies by: debwray, Michelle820

The large seroma is causing a huge knot of muscles which is getting larger, below the large seroma on my inner leg. It's impossible to get that knot out because of so much pressure from the seroma. The two smaller ones weren't drained but at least they don't hurt.

So, the surgeon told me that the seroma would probably have to be drained more than once so I called this morning for an app't some time this week. But due to the holiday yesterday which is the surgeon's clinic (Monday) day to see patients, clinic has been canceled this week and there's no app'ts. Ugh. Not even to see a resident or another doctor. This is nuts. So going in next week. 

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Hello, all. I do not have melanoma at all, at least that I'm aware of, and am hoping it stays that way.

Some background: I'm a 28-year-old male with a family history of melanoma (my aunt was 28 when she first developed the disease). Recently I noticed that a mole on my back, which I've had for many years, has grown larger.

It is normal diameter and seems mostly symmetrical, but is elevated from the skin, squishy, and has a cratered top that is tender to the touch.

Taking a shower, for instance, is painful when the water hits my back. It seems to be mostly pinkish, though the very top is slightly darker, closer to brown. It appears a little dried out. There is no hair growing from it.

I've already made an appointment with the dermatologist, but can't be seen for two weeks. Do I have cause for worry?

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/17/2017 - 6:42pm
Replies by: Nemesis, Everymoment, Anonymous, jbronicki, Nick C

I had my surgery on Friday the 13th.  All went well, but I'm so sore.  It was below my left shoulder blade and the lymph nodes were removed from under my left arm - that hurts the most. The next 2 weeks are going to be difficult while I await my results.  I would appreciate prayers that it has not spread to my lymp nodes.  Thank you!!

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snow white's picture
Replies 8
Last reply 1/17/2017 - 8:03pm

Well. It was a very interesting day to say the least.  I was so nervous for a few days before the visit. We had had all of Dads medical records sent over and we brought CD's of all of his scans.  We ended up mainly seeing Dr. Morganna Freeman who works as a partner to Dr. Hamid.  We LOVED her.  We were at the appointment for 2 1/2 hours.  She is very thorough with her questions.  First of all, she feels that Dad is responding. well to Opdivo.  Unfortuantely, Dads platelets are very low and he hasn't had a treatment since Dec. 27th.  Interesting part of this whole visit is that she is suspicious that Dad might have some type of fungal infection that often mimics tumors (I don't really understand it).  She looked at all of Dads pathology and found that the Left Lung lower lobe that was removed showed that it tested positve for fungal elements. This is something that we have never heard before.  She was also fairly sceptical about Dad having LMD, though it is a possibilty for sure, it could also be something else.  She said that they will do the Spinal tap for the LMD and also check for this particular Fungus.  The plan is to try to get his platelets up, most likely by giving him a good dose of steroids, if that doesnt' do it, then a product called N Plate will be used.  We can't have the Spinal Tap until his platelets are over 100,000.  They took about 10 vials of blood and we should have some results back by tomorrow.  On top of all of this.  We were in the ER with Dad saturday night because his temp shot up to 101.7.  He had been fighting what we thought was a cold.  It turned out to be the Flu.  They started him on Tamiflu and he is already feeling better.

There was much more talked about, but honestly my head is spinning.  We also did see Dr. Hamid and he had already been "briefed" about Dad and concurred with everything Dr. Freeman had said.  Dad goes back next Monday and we will go from there!  We are so happy that we decided to go there.  Everyone was great, it felt like the right place to be!   Also, I was SO happy to meet Paul and his daughter.  What a great guy that has been through so much.  I know it was helpful to my Mom to speak to him and hear him say that he felt it "was the place to be".  Thanks Paul!!!    Hope all are hanging in there.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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_Paul_'s picture
Replies 16
Last reply 1/17/2017 - 10:22pm

What I visit I had today. I spent the afternoon at the Angeles Clinic in Santa Monica. It's a small place, but all they do is melanoma I think. I got the impression that people were flying in there from all over the country. I had a nice conversation with a man from Hawai'i and a woman who had flown in from somewhere else who was the caregivery of yet someone else. Busy, busy place.

I am quite a sight at this point, with maybe 50 sub-q's on my noggin, and some bigger, painful ones on the back of my neck, sides, armpits, etc. He found them all very quickly. Ouch! As he took my history he kept shaking his head at all the negative responses as I answered his questions. I asked him if he was busy with people like me flying in from all over, and he expressed frustration that he kept having to clean up other oncologist's messages.

At one point he actually said  "we need to get you f*cking started!", and "I want to treat this aggresively". This was all music to my ears.

He wants to start me with a trial NCT00412828, but first needs to address this brain met. Once my brain is stable we can proceed.  I have a brain MRI on Wednesday and go back for a follow up on Thursday. Treatment may begin right away depending on my noggin. 

The treatment combine glembatumamab vedotin with Varlilumab. Neither of these involves the CTL4-A or PD-1 pathways which makespecially me happy. He also wants map my tumors for all the mutations,  a very popular topic on this forum. He doesn't want to do any interlesional therapy is it would delay my trial.

This feels so much better than the "wait and see attitude" that the SCCA has been giving me.

I met Jen (snow white) and her mom and we had a nice chat. It's so cool to meet people from this board in person - we have so much in common. 

Josh, there are several trials here for people with heavily pretreated tumors - right up our allies.

For the first time I feel like there is some real hope. I certainly like Dr. Hamid's attitude. I feel like this has been well worth the drive from Seattle. 

- Paul

P.S. Please forgive the typos, I am breaking in a new Android tablet.

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Aloha14's picture
Replies 6
Last reply 1/18/2017 - 5:27pm

It was my first one and I was prepared with my portable CD player and a book. However, the technicians wouldn't even let me listen to music during the resting time before the scan, or read a book. I was told that either one of these would make my brain work too hard.

I figurred I couldn't listen while in the machine. Someone here mentioned they could listen to music. I guess there's variations about instructions or maybe it has to do with the type of PET machine?

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/17/2017 - 8:15am
Replies by: Anonymous

Has anyone tried this recently and seen success?  I saw a clinical trial recruiting from Seattle but no results?  A presentation at at ASCO by RAbio buying can't access the poster session.  Any help or direction for information would be very much appreciated.  Thank you.

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jenny22's picture
Replies 5
Last reply 1/20/2017 - 10:04pm

Hi Jamie-

I was just looking at your last post, from XMAS day.....(I didnt know prior to that LMD had been confirmed)

Wondering how you are....have you been back to MDA?

As always, thinking about you and hoping you are  ok. 

Let us know how you are.....

xxoo

jenny

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