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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sweetaugust's picture
Replies 13
Last reply 7/28/2016 - 12:33am

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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landlover's picture
Replies 20
Last reply 7/28/2016 - 12:19am

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.

 

Stage 3C, primary on neck, neck dissection May 2016.

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mom3girlsFL's picture
Replies 5
Last reply 7/27/2016 - 11:57pm

Hi Everyone,

Its been a while since i've posted but I linger often and lift everyone daily in my thoughts and prayers!

I have been a warrior since 2003 stage 1, stage 3 in 2010 groin lymph node involvement. Did interferon till recurrence again, had radical lymph node dissection then watch and wait. 5 days before hitting 5 years I walk into oncologist and hear the dreaded "we've got a problem".  Honestly, before this appointment i was feeling embarrassed to even have these appointments when other people were really dealing with cancer!  So, stage 4 lung and retroperinoteal involvement late 2015.

Anyway,  have an auto immune disease which makes treatment tricky but started with full dose tafinlar mekinist combo. Had immediate response 3 mth scan but my body was a mess! We switched to zelboraf cotellic to see if side effects would lessen, but those meds created red purplish spots all over my body head to toe! Not funny, but yeah it was! Back to lower dose taf/mek combo.

The point of all this? Well, im still here. Still responding as of scan in june. Some days bite the big one-cant move out of bed, sleep half the day away...BUT, i also have really good days where i can be "normal"-go shopping, eat out, live! 

I really do consider myself lucky and i hurt so deeply for those of you suffering so much.  

I so appreciate the intelligent and informative posters out there who selflessly work to keep melanoma info current.  And, mostly, i am so grateful for this community who continually cheer each other on and encourage the fight.

Living WITH melanoma,

Laurie

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/27/2016 - 8:19pm
Replies by: Chendo82, Janner, btcedarr

I had a .6 melanoma removed and all secondary features were good except that i had 2mitosis per square.  Wle performed and no residual melanoma.  My doc says i have a good prognosis is this true.  They did not do a snlb because he said mels under .75 regardless of secondary features,  have a very high survival chance. I am a little confused and dont know what i should do if there is anything i can do.  

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ccf478's picture
Replies 2
Last reply 7/27/2016 - 8:05pm
Replies by: ccf478, Chendo82

Hi everyone! I just had a biopsy done yesterday. It's my first one. I had a very small flat mole on my hand for years, but recently it started getting bigger and darker. She said she wasn't super worried about it but we would biopsy it just the same. My question is, do they take the entire mole during a biopsy? I just checked today after the swelling is down and there is a tiny piece of it left on the edge of the cut. Is that anything to worry about? I can attach a photo if anyone is curious. Thanks so much!

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slh4448's picture
Replies 21
Last reply 7/27/2016 - 10:49am

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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Jewel's picture
Replies 4
Last reply 7/26/2016 - 10:09pm
Replies by: Jewel, Ed Williams, Bubbles

First of all I would like to echo the words of so many of us on this Forum. Thank you so much for

all you do to help educate us about this disease and the choices that are out there to help combat it.

Recently you posted about responces between the Ipi and Pd1. My husband did the 4 doses of Ipi 3mg and

finished in an 2015. My question is this, are the 3mg doses of Ipi showing the complete responses that the

10 mg has? It seems to me that the majority if not all who are blessed with long term remission did the

10mg. My husband has scans again in Aug and of course the anxiety is through the roof. Thanks again

Bubbles.

 

Jewel

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Mikers's picture
Replies 4
Last reply 7/26/2016 - 6:40pm

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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Lee Parlier's picture
Replies 17
Last reply 7/26/2016 - 3:17pm

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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Teochasse's picture
Replies 27
Last reply 7/26/2016 - 12:25pm

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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btcedarr's picture
Replies 8
Last reply 7/26/2016 - 11:15am
Replies by: Mkelley1, 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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JoshF's picture
Replies 14
Last reply 7/25/2016 - 11:31am

Justa quick update and a few questions. I had an MRI on pelvic area to see if what showed on May Pet Scan was indeed Bone Mets. Confirmed so I had bone scan yesterday to see if it is anywhere else in bones. I have an appt with Radiation Oncologist Thursday in the hopes we can add some radiation in with the ipi I'm doing before I head back to Houston in early September for Adoptive Cell Theraphy. Needless to say my anxiety has gone up another level. I keep wondering if my shoulder has it, my right elbow, my ribcage...areas that I now question. I always thought that shoulder and elbow were from weight lifting...hmmmm. Couple of questions that Itried finding but didn't find anything concrete...

1) Can or will they radiate multiple bone leisons?

2) Is there anywhere they can't radiate...i.e. ribcage if in fact it does show up there.

3) Does immunotheraphy work on bone mets?

I need to start getting some more W's in the win column here. The waiting and anxiety is overwhelming. Like all of us, I have a lot to fight for so I'll answer the bell. Appreciate everyone's love & support here.

Josh

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

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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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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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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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