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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melissalynne's picture
Replies 1
Last reply 8/15/2015 - 4:36am
Replies by: stars

About 2 weeks ago I had a place come up next to my eye. It appeared all at once and resembles a pimple but never has went away. It is pink. Does this sound like a skin cancer and if so what type?? I had melanoma in situ a couple of months ago on leg but this spot looks nothing like that did

Melissa Riley

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jjd583's picture
Replies 7
Last reply 8/14/2015 - 7:13pm

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

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mkirkland's picture
Replies 5
Last reply 8/14/2015 - 7:03pm

Well since my last post I have had my wide excision on my foot and my slnb which came back positive. My original breslow of 1.5 changed to 2.96 and my Clarks level went from 3 to 5. I meet with my dr again next week to discuss lymph node dissection & scans. I am also in the process of scheduled an apt at MD Anderson which is a large cancer hospital with a great melanoma team. I want to know all my options!! 

But most importantly!!!! My question or really any info anyone can provide would be grateful... I have a one year old littler girl. Could it be possible that I had this melanoma when I was pregnant?? I know cancer can be passed through the placenta. I plan to ask my dr also. Any light that can be shed would be much appreciated! 

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Eileensulliv's picture
Replies 13
Last reply 8/14/2015 - 6:29pm

On Thursday, I went in for a CT scan (with contrast) and my usual nivo treatment. Before getting nivo, they give me some Benadryl because I broke out in hives once while getting my nivo. When I had a CT scan a couple of months ago, I started vomiting towards the end of my nivo treatment, and was really out of it for at least a day, so they started giving me half the dose of Benadryl during my treatments, and I have been just fine during every treatment since then.

This past Thursday I had the scan and the treatment, complete with Benadryl. During the treatment I started feeling cold and tired, which is not entirely unusual. I finished the treatment and they removed the IV. I went to the bathroom and started shaking from the cold. I went to gather my things and leave, when one of the nurses stopped me because I was shaking so badly. She looked at my eyes and immediately sat me back down, saying I was having a reaction. Getting another IV in for more Benadryl was a challenge because of the shaking, but they got it in and my reaction seemed to calm down. And then I started vomiting and fever spiked. Tylenol was no help for the fever, and eventually I was admitted to Hopkins, where I stayed until Sunday.

They checked all sorts of things, as I also developed shortness of breath while in the hospital and had to be on oxygen. The shortness of breath still comes about, but does get better everyday. They treated me with prednisone, and I have started to taper the dosage. I'm hoping this won't delay my treatments as it did for me back in March. My onc and I will talk later this week about how to proceed. At this point, it's safe to say something about the CT contrast isn't sitting well with me. But is it the contrast alone or when it's with the nivo... We don't know. 

Have any of you experienced this? I'm just curious as to what my future scan options will be. My onc says he thinks we could try a CT without contrast, but that there are other options.

Im sorry to make a long post even longer, but the BEST part is the CT scan results.... GREAT NEWS!!! The tumors in my lungs and most lymph nodes are GONE! The mesenteric lymph node in my bowel is stable, no change... However, it is just barely larger than a normal lymph node, and may just stay the size it is now because it was so enlarged earlier this year. My onc seems to think if he were to look at it under a microscope, he wouldn't find any cancer. He says we will continue on the nivo and scan again in another couple of months, but that so far "everything looks great"! Even in the hospital when I was, of course, wanting clarification (in utter disbelief that the tumors in my lungs and other lymph nodes are just GONE) he said he would call this a POSSIBLE partial remission! I think he was trying to be very cautiously optimistic with me, but I just kept pressing and pressing! 

I just read the CT scan report this morning and kept looking for the second page... It was so short! Here's to good scans, short reports, and a celebration without a hospital stay! Thank you all so much, I love the support I continue to receive through this board!

Eileen 

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Anonymous's picture
Replies 1
Last reply 8/14/2015 - 4:30pm
Replies by: DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2015 - 1:42pm
Replies by: Anonymous, Hayden30

Hello everyone, 

I noticed today "something" under my skin, which is about 1 cm (or larger???).  it has a pink-red circle about 5 on the surface, but it feels under the skin: not sure about the shape, but it is firm, attached to the overlyink skin (when taken between the fingers, it has a dimple sign associated with dermatofibroma), but movable agains a deeper tissues. I'll be trying tiger an appointment with modern ASAP, but Ian so scared. Can dermatofibroma be felt mostly under the skin??? Can subq have a dimple sign????  Thanks for listening. I am a Stage 1 B patient, 11 years after diagnosis.

 

 

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arthurjedi007's picture
Replies 12
Last reply 8/14/2015 - 12:50pm

I was wondering if this is normal. I made the trip last May to do the first face to face to see the doc. No openings for anything yet. Ok. I have the little card and the next day sent an email thanking him and he responded within an hour. Ok so that is a legit way to contact this doc. The phone numbers on the card are just for the office.

So I've sent 2 such messages so far asking about available treatment and no answer so far. I called and got to talk to one of his clinical trial nurses. She said I would have to come in again and then they would see if they had anything. Is that normal? In my head I'm like what the heck. I've already done the first face to face they say we have to do so later we can check back with them directly because we are now their patient. Am I just being naive and this is normal? When she said that I'm thinking in my head to heck with you folks it would be better worth my effort to go to a different maybe bigger place I haven't been before.

I dunno. Getting in this trial stuff is hard enough without this crud. Is this type of response normal?

Sorry I'm just already frustrated and annoyed on top of the normal disease and med making me hurt and feel crummy.

Artie

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Tim--MRF's picture
Replies 5
Last reply 8/14/2015 - 10:53am
Replies by: Tim--MRF, Ed Williams, Anonymous, Bubbles

We have been following discussions with the FDA around approving Opdivo (nivolumab) as a first-line therapy for metastatic melanoma. Currently the label require patients whose tumors have the BRAF mutation to have BRAF therapy first, then Yervoy (ipilimumab), and only take "nivo" after those approaches have stopped working or proven intolerable. Patients without the BRAF mutation must progress on ipi before taking nivo. 

The company who makes nivo, BMS, has applied to expand the approval so the drug can be given as the first treatment, instead of the second or third. The FDA said it would make a decision by September 30. They have now announced that the deadline for that decision has been pushed back by two months. What does this mean and how will it affect patients?

First, the reason for the delay is that BMS has recently submitted a large amount of new data focusing on patients with the BRAF mutation. The FDA simply needs time to review this data.

Second, based in the initial data the FDA could have approved nivo as first line therapy only for patients whose tumors do not have the BRAF mutation. With this additional data they are more likely to take action for all patients regardless of BRAF status.

Third, the oncology drug section of the FDA has done a good job recently of acting before their deadline, and sometimes well before the deadline, so we can hope this will be the case in this situation.

Fourth (and last!), many oncologist are prescribing either Opdivo or Keytruda (which has the same restrictions) as first line therapy despite what the label says. This is in keeping with other guidelines and has not generally faced any pushback from insurance companies around coverage.

The bottom line is that the delay is not a cause for alarm and may result in more patients having access to anti-PD1 therapy faster.

 

Tim--MRF

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Millykamp's picture
Replies 10
Last reply 8/14/2015 - 3:45am

About 2 weeks ago I had an shaved biopsy on a mole done on my neck. The derm had called and said we need you back in to redo the same spot. Due to what it had said  in the report its non cancerous but it's giving us some reading...  I go in tomorrow for re shaved. But this time more wider and deeper tissue is being biopsy on again...  

 

I am am confuse by the whole thing. Can someone explain it to me?   

Melissa 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2015 - 12:23am
Replies by: KMick, kylez

If you were amelanotic, what would you be looking for; skin wise for recurrence

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Jubes's picture
Replies 11
Last reply 8/13/2015 - 11:06pm

Hi all

my doctor and I have decided to have a go at stopping keytruda and see what happens. I will try and do 2 more infusions despite debilitating arthralgia/myalgia for which I have been on prednisone since April and trying to wean myself down. Just now on 7.5 mg per day but can't function on less. 

I will have done one year of keytruda when I stop. Has anyone stopped keytruda and had disease progression afterwards. My lung tumour has decreased from 7.9 cm to 3 cm or less with no new mets in this year of treatment and the melanoma in my nodes has disappeared. I am assuming it will take 12 weeks or so for keytruda to wash out of my system. But just wondering when ppl stop it how long has it taken for side effects to go away?

thanks for any info

anne-Louise 

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heiditemple's picture
Replies 4
Last reply 8/13/2015 - 8:03pm
Replies by: lmhl, DZnDef, DianaD, CHRISNYC

A few weeks ago, I had surgery to remove a lump on my neck that showed up basically right in the middle of where my radical neck dissection had taken place in December 2013. I was originally staged 3C. I went through a clinical trial where I received Yervoy, but I was kicked out of the trial after 6 doses because I developed severe endocrine issues. I got my pathology report back today, and the lump came back malignant. The problem is that they aren't sure what kind of cancer it is.. either it's a desmoplastic melanoma (my original melanoma was NOT desmoplastic), a melanoma recurrence, or a sarcoma. For now, they're calling it a malignant spindle cell tumor because the pathologists aren't sure. Apparently I'm a weird case. I'm headed back to Vanderbilt next week, but I was wondering if maybe anyone had any experience or insight into any of this.

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arthurjedi007's picture
Replies 16
Last reply 8/13/2015 - 4:52pm
Last Thursday I was at NIH in Bethesda for TIL screening. Before going we already did a blood kit and biopsy testing. I had no antigens they wanted so the other trials were a no go.
 
Also had to be at least 14 days off nivo PD1 so last Thursday was 16 days so 2 days overdue for nivolumab.
 
Not sure how much folks might be interested in so I'll try to include a lot of my experience. 
 
Basically pretty much everyone was nice.
 
If driving you want to go to the patient entrance. Security checks the car in my case a rental and you go inside where they check your stuff then give you a day pass badge.
 
Just a short little turn from there to the main entrance where dad dropped mom and I off. He parked in P1. Not sure much about that.
 
Lots of walking required but you can avoid all the steps. If you have to be in a wheel chair that disqualifies you immediately for TIL. My cane did not disqualify me. I ended up walking all over that place that day. Not easy but suprisingly I did it.
 
First stop after the men's room was admissions. They should have sent you a map of the interior of the building ahead of time. If not it's on their website. Basically they have you sign in and give you something to read then they call your number. Then another lady brings you back to make sure all your demographic stuff is right and things.
 
Next was supposed to be Clinical. That's on the 3rd floor. But it was 7:30 when I was supposed to get my blood work and they said no one would be in until 8 so back to the first floor we went.
 
Blood work was the now typical sign in and wait for your number to be called. I guess I was nervous trying to get everything done on time and one of the patients who had been going there for years said NIH stands for Not In A Hurry. So I felt better. Then they call your number and lead you back to in my case the guys cube. As he was checking all the tests and putting labels on the tubes he noticed a urine test. So did that and back. By then he had all 12 tubes ready. Sheesh. I was used to 2 or 3. 12 was like when I was first diagnosed over 2 years ago. So yes you got to be in decent health for this. Went fine and the small bump is almost gone after 4 days.
 
Now back up to Clinical. This is where the lady I've talked to works and the nurses and doctors that are part of the TIL. They did the usual weight, height, bp, oxygen, pulse, temp thing. Met the head nurse that has 4 that do the clinical. Met one of those. Signed the trial papers. Not the papers for TIL but the papers for evaluation of being accepted into TIL is a trial apparently. If everything was done could also have new patient orientation at 10:30 or afternoon if wanted or talk to a social worker for financial aid and anything else that concerned me.
 
Next back to first floor for head MRI. Got to the place that the sign above the lady's head says CT/MRI Reception. Said I was there for my 8:30 head MRI. She looked at her papers and said she didn't have me until 9:30. I said they said 8:30. She said well they sometimes do that because of the contrast. She said I had no contrast for the MRI but I do for the CT. Here's papers to fill out and have a seat. So I turn the papers in and wait thinking she knows what she's doing. At 9:15 another lady gives me contrast to drink. Parents go to cafeteria. At 9:30 they bring me back to change into scrubs. Not easy to change my shoes on a bench by myself but I somehow did it. Then another lady that does the IV. She said I was here for my CT and I was like yes but I was also here for an 8:30 head MRI. She took me to the real MRI reception. From the other one that was through a door, down a hall, around a corner and through another door. They said I had no MRI scheduled. So back for the IV and did the CT with more contrast in my IV. Went back to the CT/MRI reception lady and questioned about the 8:30 MRI. She said that was at 8:30. I said I know I talked to you at 8:30. So back to the real MRI reception and they said they would call me if they get an opening.
 
My parents are still in the cafeteria so I'm in scrubs with no phone, bill fold or anything except a bag with my street cloths.
 
So off I go to the EKG area. That was a quick take me into a room and lay down and wait. Finally some rest. They gave me the EKG paper saying to take it back to radiology.
 
So back to radiology but I didn't want to talk to the CT/MRI lady so I asked the chest x-ray lady that the EKG person said to bring this paper to them. Her eyes get big and says no no. If you want a chest x-ray she can do that. So that was on the list too so a simple stand in front of machine. Then turn and hold on to a couple straps and both xrays done.
 
Finally everything done except head MRI. Parents not back and it is about 11am. So up to 2nd floor cafeteria and no parents so back to radiology and they just got there so back up again to cafeteria. It is ran by Eurest. Same that used to be where I used to work. Same food and tastes the same. Not that great in my opinion but I was hungry and exhausted.
 
Back to Clinical at 12:30. Wait until sometime after 1 and they take me back to an examination room. Gave the head nurse I met in the morning the paper she had given me to fill out plus the EKG paper report. Also mentioned the head MRI issue so she got on it right away. Said it was scheduled for the next morning which wouldn't work too good since we fly out the next day. So she got it set for 4 pm.
 
The next folks that came in the examination room are to check my veins. Because if I'm accepted the next visit is surgery. But 2 days before surgery these ladies hook you up to a machine for 4 hours. The needles they use are way bigger than the normal cancer needles I'm used to. This machine filters your blood so they can have something to put the surgery tcells in to help them grow. They check your veins with a blood pressure cuff and visually looking at them.
 
Next came in the lady I've been talking to on the phone pretty much every week since early May. First talked to her last November.
 
Next folks that came in was a doctor. He spent most of his morning looking through all my records. He went over my treatment history. Had me explain the cane which is more of a crutch because I don't want to fall. But like I said last winter I had to have it. He checked me out a little physically and I think asked some more questions and answered ours. He was confident I was physically ok for the treatment.
 
Next that doc and a senior doc came in. She was focused on which tumor to remove to get the best cells. Like she said they do not do major surgery because the patient cannot recover enough to do the treatment. So reading between the lines in my opinion this is something they've learned from the poor folks who didn't make it through the treatment. For my best cells would be the tumors in the fat of my kidneys but that would be major surgery so a no. Also major treatment would be the one in my skull pressing on my brain so no. They would not consider the one deep in my leg because they do not want to risk jeopordizing my already problematic walking. Now the huge one in my shoulder might have been minor surgery which is the only type of surgery they will do. But since was mostly necrotic it would not give the cells they want. Last is the super clavical tumor would be minor surgery. She felt it and it wasn't as loose as she would like but they could do it. It is also big enough because it has to be at least 2 centimeters. But it is smaller than it used to be. In my opinion it is smaller because of last winter's radiation and maybe the pd1. But since it is smaller they believe it is responding to treatment thus a no. Like she said they could get tcells but if they are going to put me through such a treatment they want to make sure they get the best cells. So again reading between the lines I think that is one reason I picked up why they have better response they only go for the best cells. Probably also something they've learned from the folks that have gone before. So no tumors to harvest so she said they would make the final decision monday when they all get together but at that point she believed it would be a no. They said the first doc would call me around 1pm monday after their meeting.
 
So back to the 1st floor real MRI reception. Signed in and they verified I already had an IV and scrubs. Waited and took 2 tylenol and went in. Typical remove glasses and leave cane. The typical small tube but at least they blow cool air in this one. Most of them get so hot I burn up so that was nice. Did the first part of the scan fine. They put the contrast in and the guy no sooner got to sit back down when I say I'm choking. I had felt a metalic taste in the back of my throat which I vaguely remember from a couple years ago they said is normal. So I swallow and all of the sudden fluid is in my throat that is too much to swallow and I'm choking. He says he's coming right in. As he's coming in he asks how I'm doing. By then I have so much fluid in my throat I can't talk so I just squeeze the ball. He says he's hurrying. Then the fluid starts filling my nasal passages so I can't breathe at all. Seems like a long time but total it was probably only 10 seconds from me saying I was choking. That guy was fast. Probably another miracle the scheduling got messed up so he was there to be fast for me. He then had me out and my back propped up going to put me on a strecther. Once I was propped up I guess it was gravity because all the fluid just rushed down. I kept my mouth closed otherwise I probably would have made a mess. So at least now I can breathe I'm just coughing and gagging as they wheel me into the corridor. Suddenly a gazillion medical people are around. They check me out and see my face and upper chest are flushed so they give me benedryl. They page the first doc that I had saw a little while ago. They are trying to decide what to do. Whether to keep me in the hospital over night or what. But since I seemed ok they started talking about finishing the scan. The tech said there was 12 minutes left but it turned out to be 18. Since my parents saw all those medical folks running they thought it was for me although there was at least a half dozen or so other people back there. They were very worried so some medical people talked to them and when I was ok they had them come see me so they knew I was ok and went back. They checked me out some more and cleared me as being ok and to never have magnavist mri contrast again. So the tech brought me to the men's room and I could see my face was still a little red. Then I got back into the tube and finished the scan. 
 
They wheeled me in a wheel chair to the main entrance. Then we waited for dad to get the car and left. What a fun day. lol
 
So today. Monday at 4pm their time I called the first doc and he confirmed it was a no. But if that one in my super clavical ever grows they want to know about it.
 
So I got a message out to my Chicago doc waiting to hear if he has an opening in any of his good trials.
 
Also called my Saint Louis doc where I'm at and already got setup to get back on my PD1 tomorrow afternoon. So only 1 week late.
 
Thinking about that trial Celeste mentioned about Keytruda plus some inhibitor pills. Also thinking about that trial Catherine posted about Keytruda plus daily IL10 injections. Also thinking about going to MSK or MDA. Especially since the t10 ablation and cement it seems I can fly some granted there was almost no turbulence and very soft landings. Certainly going to have to pray for what to do next.
 
So that's it. Maybe some tidbit in there will help somebody sometime. I dunno.
 
Artie
 

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Banders's picture
Replies 2
Last reply 8/13/2015 - 1:13pm
Replies by: dfeng, Mat

My fellow stage 4 Braf Positve on Mek/Taf:

So I've been on the combo sine March with incredible results and little to no side effects.   Even feeling good enough to do some yard work.   About a month ago I got into some poison ivy while pulling some weeds in a part of my yard where I've gotten poison ivy rash before.

 

No big deal and it went away.  About a week ago pulled more weeds in that area (yea, I'm not very smart) and once again bumps and a rash.  However, it didn't look the same as previous poison ivy episodes and today my oncologist looked--doesn't think it's poison ivy.

It's a red rash that is oozing and it's primarily on both wrists--both of which are swollen.

 

Sorry for the length, but does anyone have any experience or thoughts?

Onc. thinks it might be a side effect caused by sun exposure.  It's right where my long sleeves that I always wear end.

Thanks ahead for anything.  Can't see dermatologist until next Monday.

 

Brett Anderson

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anitarivera's picture
Replies 5
Last reply 8/13/2015 - 12:01pm

I thought I recently posted, but can't find my original post. I'm new here, diagnosed last October with stage 1b melanoma, had a WLE and no further treatment. I consider myself extremely lucky.

my husband and I want to have another baby but no doctor will give us a straight answer about the possibility of the pregnancy causing melanoma to rear its ugly head again somewhere on my body. We are scared/confused and would appreciate anyone's experience or knowledge with regards to this topic.

thank you!

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