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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Esmith123's picture
Replies 1
Last reply 8/8/2016 - 10:01am
Replies by: Ed Williams

I am going to the dermatologist on Wednesday to show my derm a couple spots on my skin that I am concerned about. All my moles are 2mm or less. The more I read online about Melanoma, the more terrified I am and I constantly obsess over my moles and compare them to images online. I am in my early 20's with no history of melanoma and no family history of melanoma, BUT I have tanned in tanning beds and outside, so this does put my at a much greater risk. 

None of my moles have changed over 6 months.. what are the chances that my tiny moles are melanoma? Would I have noticed any changes? I do not know anyone who has had melanoma, so I don't know who else to turn to and my doctor just simply doesnt look at my moles because they are so small he just assumes they are fine. Please help!

Thank you!

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/8/2016 - 9:53am
Replies by: Racetraxx1, jennunicorn, Anonymous, youngann

I have two moles on my face that bother me. No derm has ever told me to get them off but everytime I look at them I get anxiety.  I play several outdoor sports and my face is always in the sun and sometimes im not wearing sunscreen so I'm always worried about these two moles going haywire?  I have never had melanoma but did have 1 atypical mole removed years ago and it was the Lowest level.  The one mole is on my temple and I have always had it. It is about 4mm. The other appeared on the bridge of my nose after a golf trip in 2011.  It is dark, tiny,maybe 2mm but shaped like a lightining bolt which I thought was odd but several derms viewed it over the years and said nothinh.   My question is do you think it's prudent to remove these moles and if so what's the best way to minimize scaring ? 

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lrkg1234's picture
Replies 20
Last reply 8/7/2016 - 6:34pm

My husband Scott has stage 4 mucosal melanoma.  He has just been diagnosed.  There is no known origin. 

It has spread to the liver.  We are not able to do surgury because of the spreading to the liver. 

Scott is going to have further tests for mutations, a PET scan and more full coverage CT scan to see if it has spread to the brain. 

We were given 3 possible options for treatment:

1.  Interlewken-excuse my spelling, but you know what I mean.  I believe it's the same as Interferon. 

2.  Zelboraf, if Scott has the Braf mutation. 

3.  Yervoy, seems effective.  An option for now if the cancer has not spread to the brain. 

We were told that you need to decide whether to start with the Interferon or the Yervoy, because the Interferon won't work if you do the Yervoy first. 

It seems like it would be good to have the Braf mutation so that there is another option. 

Any advice is appreciated.  I'd like to hear about experiences that others have had with these drugs. 

We are sort of in a walking coma right now trying to process this all.  It's been overload on the brain. 

One plan was to go to MD Anderson or Dana Faerber for a consult and see if we can get any other options.  

Please help if you can, there is so little out there about this.  Lisa

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Lee Parlier's picture
Replies 14
Last reply 8/6/2016 - 10:14pm

While I am receiving my 4th and final dose of yervoy 10 mg I wanted to do something productive (and pass the time) so I will share as much information as I can. I have mentioned the archaic view that my Dr.'s have had with immunotherapies and their fears of the side effects. I started yervoy 8 weeks ago today under the guidance of a regular oncologist. It took a month for me to finally convince him that interferon was not an option and yervoy was my choice. I stress 2 things: 1) Regular oncologist 2) My choice I should have began my melanoma journey with a mel specialist and if I do have an option in treatment with a better chance at achieving NED, I have the final say.

I recently went to Duke Cancer Center and spoke with Dr. Salamas (mel specialist) and Dr Moscow (cancer Surgeon) I want to say it is a night and day difference in question and answer sessions to what I have been used to. I recently had a pet scan (mid yervoy treatment) which showed multiple tumors on liver etc.

Answers from Dr's Salamas and Moscow (prolly mel 101 for most) but hope there's some useful info for some.

1) What are these sobcutaneous nodules that popped up after starting yervoy?

ANSWER: They are in transit cancer that reacts to the treatment. (even though I did have a biopsy that showed some were) She said biopsies are not always reliable when dealing with this reaction and her experience showed most had some melanoma in the sub q tumors.

2) I started with 50 or so mel sub q's and I currently have 9 visible, is this a sign I am a responder?

ANSWER: I am caustiously optimistic that you are a responder based on the disappearance and shrinkage of the visible tumors. The chance of being a total responder in my experience is around 12% but you have signs of being at least a partial responder.

3) Does my chance of being a total responder increase since I will complete the 10 mg rather than the 3 mg doses? 

ANSWER: People are different but in my experience the benefit may increase the chances of being a responder by 5% with substantially more risk of toxic side effects. Sometimes more is not better.

4) My mid treatment pet scan showed new tumors etc. Is there any conclusion to be drawn?

ANSWER: Not really, The pet scan was showing activity but since I do not have a base line scan to compare it to it is impossible to say. My feeling is that the lesions were there before and are reacting to the treatment . I have seen pet scans light up and after treatment is through and it has been dead tumors that did react well to the treatment. I want a pet scan 2 months after your final treatment and we will determine if the tumors are the same, better or worse.If they are the same or better we set up the next pet scan and watch and wait. If they grow we move onto a different treatment and since you are stage 4 now, you have more options for treatments which have out performed yervoy in trials. With yervoy, there is usually a worsening before the treament kicks in even though everyone is different, most experience side effects and or inflammation from immunotherapies.

5) Would I benefit from T-VEC INJECTIONS IN THE SUB Q TUMORS? 

ANSWER: Stage 4 patient's are not eligible to receive t-vec injections and again, I am cautiously optimistic the positive reaction to the visual tumors with the yervoy that I wouldn't recommend it anyway. 

6) What kind of adjuavant therapy can I receive when I am NED (NOT IF)? 

ANSWER: There is no adjuvant therapy at stage 4. We will wait and see if the yervoy kicks in and will have a better idea after your next scans. Yervoy can take a while to rev up ypur immune system. Scans every 3 months to monitor. If you are worse, we move to something else. We have new trials daily at Duke and since yervoy was approved, we have other treatments that have shown to be more effective than yervoy.

 

There were some other things we discussed but suffice to say my experience with a specialist was at least more informative than I have been accustomed. I didn't hear all good news, didn't hear all bad but I did feel like I had some direction when I left.

Will I be a responder to yervoy? Don't know but glad I made the decision and wouldn't change it.

Would I begin my journey with a mel specialist if I had a time machine? Absoluteley and a surgical onc too. 

I would compare a regular oncologist and a melanoma specialist like this:

 

You are going to a big city you have never been to. You're nervous about losing your way. You miss a turn and you are lost and you are holdin your map quest directions as you drive. You may well find your way back on the right path but you spent a lot of valuable time lost.

You are going to a big city and turn on your GPS. You get future instructions on turns and what lane to get in. You make a wrong turn and the GPS gets you back on track. 

Maybe over simplifying but I thought of this as I was cussing my way out of Durham trying to find my way. My yervoy drip is beeping. Best of Luck to everone fighting. Can be scary, but it's not hopeless 

 

Lee Parlier

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Ginger8888's picture
Replies 19
Last reply 8/6/2016 - 8:32am

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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Christine.P's picture
Replies 6
Last reply 8/5/2016 - 5:00pm

Long story short, I am stage 4A (primary tumor on left elbow that spread to lymph nodes in armpit and into breast and sternum and 2nd primary in right leg/ lower calf that required a skin graft.) Just had my 3rd dose of ipi/nivo today. A PET scan in May found a new tumor (4mm) above the 2nd primary site in my leg and biopsy confirmed melanoma.

My most recent PET scan (July 30) showed the tumor in my leg is now 7mm and there is an enlarged lymph node in my left groin. I will be having the tumor in my right leg removed soon but I have a question about the left groin.

First, can melanoma appear in the left groin with the closest primary tumor being in the left elbow? My doctor doesn't think it can be melanoma because there is no primary tumor near my left groin. We are doing an ultrasound and posstible biopsy just to be safe. 

Next, how does the ultrasound determine if a biopsy is needed? 

I am not stressing about these procedures, but I cannot find any information on if the lymph node that lit up in my left groin on the PET scan could be melanoma. I realize it could just be inflamed, but I just want to know if it is even possible it could be melanoma that far from the 2 primary sites. 

Also - does anyone know what the radiologist needs to see in an ultrasound to suspect cancer and go ahead with the biopsy? I just like to know what he/she will be looking for. 

Thank you for any info you all may be able to provide. I tried looking for info but I am tired and my  brain is not sharp right now and I just need some help. 

Christine P. 

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Replies by: gazzz, Ed Williams

has anyone encountered this? When I began Tafinlar + Dabrafinab I did get a slight fever couple of days, but now that I have ceased taking them (after 19 month) I get this fever, particularly at night (and chills of course). It commenced as soon as I came off, and my doc assures my it cannot yet be a side effect of going on to immunotherapy.

 

Thanks

Gazz

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/5/2016 - 10:55am
Replies by: momof4boys, slh4448, BrianP

Folks!

 

any thoughts on clinical trials ?

- How can you find one?

- Should be worried about joining one?

Anyone joined a CT before?

 

Thanks

Karim Galil, MD

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Jewel's picture
Replies 8
Last reply 8/5/2016 - 9:18am

Hi there,

   My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

Jewel

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/4/2016 - 11:43am
Replies by: jennunicorn

I have some questions about screening for melanoma.  I want to start by saying I always have been anxious about my health and as of late Melanoma has worried me.   Melanoma does not run in my family.  I have dark hair and somewhat dark skin but at 35 I never wore sunscreen and this has me bothered.  I had a few decent sun burns growing up but they were rare.   My main concern is that I have a good deal of moles on my body. They are pretty tiny but I worry about them.   I have been to several dermatologists and none of them have ever used a dermascope on me. 

I went to the University of Penn and expressed my concern with them.   The first doctor examined my moles by eye and said everything looked good.  He then went out and brought a team of doctors in and they examined me again.  They said everything looked good.  I asked them all about using a dermascope and they said it was not necessary.  I asked them about mole mapping and they said that I did not need it.  

The doctor told me to come back in a year and that ultimatly I was low risk for melanoma.  I reminded him of my sun exposure and use of tanning beds when I was in college and he said that raises your risk slightly but more than likely you will never see melanoma.  I then asked him about the number of moles I probably have about 150 tiny ones putting me at a higher risk and he said again this raised your risk minimally.  He said he sees people with way more moles than me and most of them will never see melanoma. 

This board is very knowledgable and I wanted to see if this was accurate ?  Thank you for your time.

 

 

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Ajwells's picture
Replies 5
Last reply 8/4/2016 - 4:10am

I read a lot about Yervoy on this forum. I see mostly "I didn't have any side effects" or "my side effects didn't start until the 3rd infusion". 

To be upfront this is adjuvant treatment.  And a lot of what I could find are older articles from like 2011 during clinical trials  

As I lay here a week after my first infusion SO tired. Bone tired. I have yet to make it through a 4 hour shift at work. 

I looked up drug interactions because I'm on a lot of psych meds (Lamictal, Effexor, Buspar, Trazodone) and I didn't find anything, I guess I should trust my oncologist to know. 

I'm trying to eat healthy, drink plenty of water. My appitite is decreased, but it has been decreased for long before the melanoma came along. 

I feel like a pansy. How am I going to take the rest of the treatments when I'm already over it?  I can't take care of 3 kids, work my job, and feel sick all of the time. 

I made the choice along with my doctor to do the treatment because cancer and recurrence run rampant in my family and I'm too damn young and have too much to live for to play games. So I've got to either figure out what to do to deal with the side effects or I need to get less on my plate. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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_Paul_'s picture
Replies 8
Last reply 8/3/2016 - 11:02pm

Hi All,

I took a break from the board for a few months to enjoy my NEDness. It was great. But now I am back because one of my the presumed dead tumors decided otherwise. My onc at the SCCA is talking to me about this trial: https://clinicaltrials.gov/show/NCT02410512. It combines ANTI-PD-L1 with MOXR0916, a humanized agonist anti-OX40 monoclonal antibody. I am trying to find out about the trial, like dosing schedule, toxicities, and the like. Is there anyone here on the trial that can share your experience?

Thanks - Paul

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JoshF's picture
Replies 11
Last reply 8/3/2016 - 5:02pm

Hi Everyone-

I received a call today from the Sr Clinical Leader at MD Anderson. Just to bring everyone up to speed I'm doing the Phase2 trial of Adoptive Cell Therapy with low dose IL-2 and IPI. They took the CD8+ cells from my blood about a month ago, collected Mart 1+ cells and then let them grow. She said everything looked great and earliest infusion date of September 1st. I'm nervous, excited...hopeful. I know there's not a lot of people out there who haven't done this so it makes me scared....but is there any guarantee in anything we do? I had complete response on ipi and went for a while before recurring in a big way after starting PD-1. Currently, I've had 2 doses of ipi and 3 days of radiation with 7 to go. My 3rd infusion of ipi is scheduled for Aug 12th which would make me start trial a bit later to meet washout. On top of all that I had a 4mm punch biopsy yesterday for a tiny bump on side of scalp. Love the anxiety waiting to see what that is...as derm told me, clinically I wouldn;t be concerned but it's you so... he was going to leave it...I asked him to take it so I can know. Now I have decisions...go with early date or wait for another dose of ipi....any thoughts? I know this seems like a no brainer but with stuff like this I start to lose logical thinking...indecision...one of biggest problems I've had to deal with in my life. Hope everyone is well...

Josh

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

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nlac26's picture
Replies 5
Last reply 8/3/2016 - 4:58pm

I started my clinical trial on March 3rd and what a busy day that was! After all the of the pre-testing they put you through, you'd think just taking the drugs would be the easy part. Not really!  My first day of the trial they put in 2 Iv's, one for the nivo infusion and one to pull blood from periodically for 8 hours. It was a long day at the hosptial to say the least. The infusion itself wasn't that bad. It lasted 30 minutes and then I was moved to a research treatment room for the remainder of the day. I take two pills a day of the IDO inhibitor as well. Sometimes I feel they make me a little wonky but as the month has progressed, those feeling have started to fade out. I had my second infusion March 17th. That one hit me a little harder and I was super fatigued and drowzy by the time my husband got me home. I slept the rest of the day, into the night and woke up Friday much better. I did the four rounds of Yervoy last fall and never felt one side effect from the treatment. I expected much the same from this treatment but it seems to be a little stronger. I met with the Dr yesterday and after an exam, we both agreed the tumor in my left armpit is shrinking! Of course, only a scan can prove that but when you've felt this huge lump in your arm for months and all of sudden it's not as noticeable, I have to believe these drugs are working! The little lumps lining my left shoulder blade are also gone! When you're constantly stuck with needles and ran through machines, believing in good news helps the decisions you've made in treatment worth it. We're very exicited and keep praying for the best possible result..NED! Next Thursday will be my 3rd infusion with dual iv's for more PK' blood studies. If I know it's working I can handle it a lot better!  I'll have my 8 week scan in the beginning of May to verify what we're all hoping for... Wish us luck as we keep fighting the fight! Niki

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