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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Mikers's picture
Replies 2
Last reply 7/25/2016 - 9:58am
Replies by: Andrew1725, Mikers

My wife is a stage 4 patient. She was diagnosed with melanoma 1.5 years ago having multiple lesions in lungs. They were successfully resolved with Dabra+Tram cobmo. In Feb 2016 she added Keytruda to this combination because one brain met was found. The lesion was successfully treated with gamma-knife. Last MRI showed 8 new lesions in her brain which appeared very quickly - only within 1 last month. Seems that Keyt+Dabra+Tram are not working.
My question is which therapy can we consider next?

Ipilimumab? or chemotherapy with cisplatin+carboplatina or temozol?

or any other clinical trial?

 

Thank you!

 

 

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slh4448's picture
Replies 19
Last reply 7/25/2016 - 9:21am

Hello everyone,

My name is Stacy and I'm a 51 year old male that was diagnosed with melanoma back on May 24th. The original pathology report from my Dermatologist came back stating Clark's level IV, 2.37mm with no ulceration on my right knee and malignant melanoma in situ on my right neck. My chest xray is clear. I live in Kansas City. I went down to MD Anderson on June 22nd and met with Dr. Royal for a second opinion. Both Dr. Royal and my Surgical Oncologist here at the University of Kansas Hospital Cancer Center believed that my right knee identifies more as stage two.

Last week on July 12th, I had a Sentinel Lymph Node Biopsy of one node removed from my groin area. I also had a wide local excision procedure on my right knee and right neck. The pathology report that came back states each location is negative for melanoma. However my SLNB came back positive for metastatic melanoma. 3mm in maximum diameter and involves 7% of nodal cross sectional area and negative for extracapsular extension.

I was given these results on July 18th. I was told because of the positive lymph node, that my melanoma is now at stage three (T3aN1a). I have a pet scan scheduled for July 25th and an mri of my brain scheduled for July 28th to determine if any other areas have been affected. I meet with my surgical oncologist on July 28th to go over all of the upcoming results, etc.

I have sent my latest pathology report down to my oncologist at MD Anderson for his opinion as well.  

I would welcome any thoughts, suggestions or ideas as to how I go about attacking this from here.

Regards,

Stacy

 

 

 


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pasadenagirl's picture
Replies 1
Last reply 7/25/2016 - 8:27am
Replies by: Janner

Good morning 

I was previously dx with melanoma stage 1b, originated from an existing mole in 2014, since I have had a few other spots removed but all has been good.  I do my best to watch my skin for new moles or changes in existing moles.   I have a mole on my stomach that I have had since I can remember and recently it has gotten a faint white ring around it and I feel like the mole has changed colors but not darker, I think lighter.  It's also not as perfectly round as it was.   I have read about halo moles and Im assuming that is what this may be, however having had melanoma I was just wondering if this type of change is more ominous in nature.  I do have a derm appointment coming up and will discuss.  I just like the feedback on this board, I never feel judge or stupid and like the insight from so many knowledgeable warriors.

Blessings to you all

Pasadena Girl

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Teochasse's picture
Replies 21
Last reply 7/24/2016 - 11:03pm

I have not posted in a while and maybe few people on this board remember me but I just wanted to quickly say that am still doing fine, still alive and NED after 6 years.I was diagnosed with cervical mucosal melanoma in 2010 and given "numbered days" to live .Please believe there is a hope that this nasty disease can be beaten,I am the living proof .My heart go to all brave fellow warriors that are fighting this dreadful disease ,medicine is making a progress every day towards eradicating  it for good.Just hang in there.God Bless!

Teodora Chasse

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Hi guys,

I have been very busy in the past month and a half and haven't been on the site.  I moved and now just started a new job.  All is great and I am enjoying life and the nice weather.

I just scanned again and found out today that all is perfect.  I feel so lucky!  But again that questions pops up....how much of Keytruda is too much?

I heard from my doctors that they have found that of 61 patients that have come off of Keytruda, only 2 reoccurred.  Those are great odds right?!?!  Seems as though the drug is doing a great job of re-training the body to fight off Melanoma.

So what are your thoughts and what have you found?  And I apologize if you all have already discussed this in the weeks following the ASCO meeting, I missed the conversations and am just trying to feel out peoples thoughts.

Thanks so much and all the best to you fighters out there,

Laurie

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jade1111's picture
Replies 9
Last reply 7/24/2016 - 9:35am

Hello! So my mom went to the Drs today.. they decided no infusion based on the rash.. the rash is pretty severe.. they all looked a little shocked.. purple like bumps all over legs and back and some on arms. Also revealing itself was a small purple hard like mass on the arm pimpke sized (her original site is leg). Has anyone heard of these little mets showing up with therapy? They said for now  no biopsy they will just monitor. Was not expecting that part.

Thanks!!!

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Rita and Charles's picture
Replies 7
Last reply 7/24/2016 - 9:32am

After 9 months on Braf Combo, my husband was suffering still with such nausea and joint pain that he stopped.  He was 2 1/2 months without meds and we feared the worst PET Scan results.  The oncologists were as surprised as we were relieved - no progression, still stable!  The only thing that happened within the 2 months off is that he developed vitilligo..........but the good results are what we really loved.

The Combo worked!  We don't have scans scheduled now until October :)  Vacation from worry worry worry and fear......for now!

Rita

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btcedarr's picture
Replies 7
Last reply 7/24/2016 - 6:58am
Replies by: Anonymous, btcedarr, keepthefaith11

I had a Stage 1b melanoma removed in October followed by a WLE and negative SLNB. I have been going to my dermatologist every 3 months. Last week she noticed a mole on my back that looked a bit inflamed and removed it for biopsy. She thinks it's "nothing", I heard that before! Lol! But, with my history she removed it. I keep reading that inflammation is a sign of melanoma. Is this always the case? And if it wasn't pink around the border 3 months ago, shouldn't be anything too advanced if it is, correct?

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IvanaDim's picture
Replies 5
Last reply 7/23/2016 - 9:30pm

Hello,

Last results shows my father has progression :-( more mets to liver, one spot to lung. So far tried keytruda, biochemo and now dr says carbo/taxol. Did anyone got good results from carbo/taxol? Is it very brutal?
He is in pain and I need your opinion allso on prednisone. I read that it supresses the immune system and we dont need that, but... Anyone has expirience? Does it help and how much you take? How long?

Thanks for any suggetions...
Best wishes to all!

Kind regards,
Ivana

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Lee Parlier's picture
Replies 14
Last reply 7/23/2016 - 9:30pm

I received my pet scan results yesterday and they were bad. Multiple mets in neck, liver, lower abdomen, pelvis etc. The SUV was around 4.00-5.00. My prior pet scan was clear on Feb. 29. I had lymph node removal in March in the left groin with 6 showing metastasis. I started yervoy and radiation on May 26 and due for my 4th ipi treament next Thursday. 

I did have the satellite tumors pop up and the sub q's that were purple. Most have disappeared. I see the melanoma Dr. and surgeon next week at Duke. 

Just a few questions:

1) Has anyone that tried the immunotherapy experienced a worsening before finishing treatment?

2) Is the disappearance of the visible sattelite tumors a sign that the ipi is working?

3) How long does it take to know if you are a responder to ipi? (I am currently 7 weeks)

 I know the melanoma Dr. will answer these questions next week but I know there are a bunch of melanoma fighters that have talked to some of the best Docs in the field and I would welcome any input or answers you may have been told. Thakns, Lee

Lee Parlier

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Casitas1's picture
Replies 5
Last reply 7/23/2016 - 5:56pm
Replies by: jvictoria, Anonymous, Lee Parlier, Casitas1

Been on Keytruda  January of this year. Caught a virus two weeks after 1st. infusion. I have had a productive cough with bad taste ever since. Just wondering if anyone has had this as a side effect? Cough is listed as one...

Best,

Paul

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/23/2016 - 3:30pm
Replies by: Alce123, Janner

Hello!

Just a quick question for anyone out there who might have had a similar experience.

On 06/28 I had a punch biopsy of a mole on my right leg. The path report came back positive for melanoma depth of 0.44mm, no ulceration, mitotic rate of 0.

On 07/13 I had the rest of the lesion excised. My surgeon wanted to do this before the WLE to get a full path report before destroying the lymphatic flow in case I needed a SLN biopsy.

I called today for the results because the anxiety was killing me. Turns out the PA my doc usually works with had a baby yesterday so I got her very fresh replacement. Anyway, the PA said I'd that I'd have to discuss it with my surgeon and was confused because the report came back as "no evidence of residual tumor in specimen."

I'm confused since the original path report said the edges WERE involved (but that it had clean deep margins).

Don't get me wrong, I desperately want this to be true but how likely is it?

I have an appointment on Thursday morning with my surgeon.

Alc

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jennunicorn's picture
Replies 17
Last reply 7/23/2016 - 11:54am
Replies by: Anonymous, jennunicorn, kylez, Bobman, Polymath, JoshF, Gene_S

My dad sent me this article, thought it was very interesting.

http://www.today.com/health/how-red-hair-gene-raises-skin-cancer-risk-t1...

I am the only one in my large family with red hair. When I first met my melanoma dermatologist she told me that even if I had never seen an ounce of sun in my life, I probably would have ended up with melanoma anyway due to the red head gene. It's like I was born with 2 decades worth of UV ray exposure without ever having seen the sun yet, pretty wild. Any other gingers on here will find this interesting too. 

It's also for anyone with light hair and light eyes... you likely have the ginger gene in you too. 

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Landlover's picture
Replies 19
Last reply 7/23/2016 - 8:29am

I have been diagnosed with stage 3C melanoma- brief overview: mole on neck biopsied + for melanoma stage 1 Nov. 2015.  Swollen lymph node on left neck feb 2016, biopsied and positive for melanoma april 2016,  neck dissection June 2016 with three additional lymph nodes.  Now I am stage 3C, recovering from the neck dissection.  My melanoma is Braf negative.

I saw my oncologist for the first time yesterday, Dr. Lao at University of Michigan.  To my surprise, he is not offering ipilimubab.  He feels strongly that the benefit to stage 3 is not proven and the side effects are too potentially dangerous.   He offered me close monitoring, interferon or a clinical trial of pembro vs interferon.

I am very interested to see what others in my stage are doing and what your centers are recommending.  Based on the above options, I am leaning toward close monitoring as I strongly do not want interferon, but I kind of hate to "do nothing" active that could possibly increase my chances of not having a recurrance.

Thanks so much.

 

Peggy 

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ecc26's picture
Replies 3
Last reply 7/22/2016 - 9:45pm
Replies by: ecc26, kylez, JoshF

Starting last Friday up through today I have spent the better part of every day (except Tuesday) and one overnight in the hopital. My poor husband has been with me every time and so has missed much of his work week as well. Hoping this trend doesn't continue.

Last Friday I started the week with a regular visit with my oncologist before Monday's scheduled infusions of IPI/PD-1. After looking at my bloodwork and listening to my complaints of worsening belly pain (not nausea) over the previous couple of days he decided to admit me overnight for a chest/abd/pelvis CT and a blood transfusion. He also more or less banned NSAIDs as a method of pain relief and told me to use Tylenol (virtually useless) or opiods (which make me dizzy, nauseated, and generally non functional). I wasn't very happy and we ended up with a compromise that I could use Advil and a muscle relaxant in the morning (back pain) to be functional, and the opioid in the evening when I don't need to be functional, just sleep.

I was discharged Sat morning following the CT, and 2 units of blood. As many know, hospitals are not restful places to start with, let alone with the additional monitoring that comes with a blood transfusion. I spent most of the rest of the weekend resting.

Monday morning I went back in early for a recheck and to get my infusions. They added an IV Fe and started me back on Zometa (for bone strength), so by the end I was there from 8-2. Just got a light lunch and went home- no point in trying to go to work.

Tuesday didn't go to the hospital, but abdominal pain got more prominant, and by Wed morning didn't even dare put water into my stomach I was in such pain. Calle my oncologists office and they had me come in- husband drove and 2 L of fluids and multiple IV meds later we were there from about 9-3, with instructions to come back today @ 10:30. We were there at 10 hoping to be done and have me home before my husband's 1:00 meeting. Didn't happen. While we got started early enough, didn't get the Dr visit, meds, and port de-access until around 2. Husband had meetings at 2 and 3, obviously missed the 2, but instead of being at home resting, I'm hiding in my office waiting for him to come back and get me. His meeting just ended, so we'll be on our way soon.

Not what either of us had in mind for the week, but he's done so much I can't get mad about this. Hoping to not have to go back to the hospital again for a while and planning to just stay home tomorrow.

-Eva

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