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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Hey all! Just wanted to drop in and say that I did get excepted into the trial and just patiently waiting to see when I will start. It is still a very scary thing to have to do, but I know this is the right thing for me to do. I just can't sit, watch and wait! I want to thank the ones who have reached out and gave me great advice and positive thoughts. We are all in this together!

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Langolier's picture
Replies 6
Last reply 12/11/2017 - 10:06pm

I was just diagnosed with Melanoma and I’m completly lost as to how bad it is and how worried I should be, the dermatologist seems to think that it should be ok but he nevertheless has referred me to Cedars Cancer Clinic in Montreal so that more can be removed. This is the biopsy result:

-malignant melanoma, superficial spreading type

-cell type:epitheloid

-depth of invasion (breslows) 0.8mm

-clarks level II

-growth phase: radial phase

-ulceration:not identified

-dermal mitotic index:insufficient invasive component for evaluation

- regression:not identified

- angiolymphatic invasion:not identified

-perineural invasion:not identified

-pertumoral lymphocytic reaction:non brisk

-microsatellitosis:not identified

-pathologic stage (ajcc, 2010): pT1a

-resection margins: free(1mm from the closest peripheral margin)

 

Any help in deciphering and helping me understand what is going on I would appreciate it. The dermotologist mentioned the referred surgeon will remove more area and possibly a lymp node biopsy. Thanks.

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Hello, everyone, I have a quick question here is some background info. 

 

My brother had a right mid paraspinal: malignant melanoma without ulceration, Clark level 3, 0.45 mm in Breslow Thickness, with a mitotic index of 0 (pT1a). He had this 1 year ago December 2016. 

In August he had a Right neck: compound nevus with severe atypia. The examined edges were uninvolved. Re-excision was recommended. Early or evolving malignant melanoma in situ could not be ruled out. 

Now my brother has a right posterior shoulder: irritated compound nevus, congenital type, focally extending to the deep edge of the specimen. They are saying no further treatment is necessary even though there are cells left from the first excision. Should we re-excise, because we are worried that if we leave the cells being that there is no mole there anymore it would be hard to monitor any changes and the cells may become bad?

What would you guys recommend to re-excise or not? 

Thanks so much 

John

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jagstter's picture
Replies 1
Last reply 12/11/2017 - 11:21pm
Replies by: TexMelanomex

Happy Holidays & Merry Christmas, Everyone!

 

Back @ my favorite place (not!) for labs, scans & answers ... hopefully ;-)

 

Very eager to get lungs confirmed clear from August scan. I had a PET/CT in Pensacola, early November & it looked good. That would definitely be a good Christmas present for me!

 

Separately, I'll be trying to get somewhat of a second opinion regarding the right kidney tumor dx'd by the Urological Oncologist @ home. It has been increasing in size, all year. However, Doc wants to 1st do a TURP for my 180g prostate, allow recovery, then take a partial or full kidney in the spring. I don't think MDA would want to do a biopsy (from everything I've read) but I could find myself surprised. Only bummer w/ that is I'm flying solo, this time. My sweet wife needed to stay home w/ the 4 kiddos & a crazy "taxi" schedule. She explicitly told me I was not allowed to have any surgical fun on my own ;-)

 

Anybody here in Houston, this week? It would be great to meet fellow Warriors & encourage one another ...

 

Take care!

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Tracyyy's picture
Replies 4
Last reply 12/11/2017 - 12:31pm
Replies by: Tracyyy, SABKLYN, Toby0987

Dear all,

Nice to meet you all here even though it is difficult for me to post....

My mother was diagnozed in 2013 melanoma stage 3. Until now everything was fine, she did all her regular scans. Lately she found out she had a swollen lymph node in the groin which is near the operated mole. She is having the node removed tomorrow, but all the waiting and not knowing is devastating to me and for our family... I cannot stop searching the Internet, i know this is not a good thing as every problem is individual but i am so worried. However, I found out that there are many people with 1 lymph node positive which have been NED after that. I would appreciate sharing some expercience because she means everything to me!!!

Sorry for my bad English, I am from Bulgaria. Wish you all good health!

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ThinkingPositive's picture
Replies 1
Last reply 12/11/2017 - 12:58pm
Replies by: Treadlightly

Hello,

Today is my one month anniversary of my lovely 3 cm diameter nose graft.  My oncologist said no snowboarding this winter due to cold temps and risk of falling on face. Has anyone on this site with a skin graft on face been able to resume winter sports?

Was IIA and its staying away.

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BillB's picture
Replies 4
Last reply 12/12/2017 - 12:21am

Hi to everyone and thanks to all for posting information regarding their lives and treatments, it has been very helpful to me. I entered the melanoma community on 11/1/2016. I had a blood blister like growth removed from my right temple on Oct 26, 2016 and met with extreme shock on 11/1 when I was notified it was a nodular melanoma ( 5 mm, ulcerated, neural and vascular invasion, mitotic 15). Immediately set up with local oncologist and completed PET scan on 11/9/2016. I started researching melanoma immediately ( not hard to do when you’re not sleeping) and identified that one of the best cancer centers was in NYC and only four and half hours away. To help my decision to be treated there easier was the fact I have two sons that work in Manhattan and one of them lives in manahatten and the other just North of the city.  I completed surgical, oncologist, and plastic surgeon consults to complete the WLE  before the oncologist in Syracuse could schedule my PET scan. The plastic surgeon who completed the original surgery did obtain clear margins, just not wide enough. The PET scan on 11/9 came out clean, no activity identified and I also notified the oncologist in Syracuse that I had decided to be treated at MSK.  

November 17 WLE and skin graft. All went well and I wore the bolster well. November 28th met with surgeon and unfortunately they identified in situ melanoma along the 6-12 margin and we needed to go back and do it again. Surgery scheduled for 12/8, and if pathology results are clear the graft would be completed on 12/12. Notified of clear pathology on 12/9, graft completed 12/12 and I wore the bolster well again. Interesting to go home with a hole in your head for 3.5 days. Slept in a recliner for 38 days.

February 2017 CT scans completed, nodes identified on thyroid, ultrasound, then ultrasound with fine needle biopsy, no melanoma.

Early April I felt a small node above my jaw. Future trips to MSK, CT, MRI, ultrasound, ultrasound biopsy, melanoma has surfaced again. May 6, parotid gland and right lymphendectomy completed. Parotid gland and 35 lymph nodes removed, 3 lymph nodes on the parotid gland (matted) and one node in the neck came back positive. Oncologist recommended radiation to head and neck to try and prevent future head and neck issues. 

June 6th to  July 6th 48 gray in 20 installments. Made it through the radiation pretty well. Standard expected side effects. Prefer not to do that one again.

CT scans the end of July identified 5 lesion on right lung. CT guided fine needle biopsy completed on 8/9, results 8/10 confirmed what was already expected. Received first Keytruda treatment on 8/10, right after receiving pathology results. I’m BRAF +, needed to add that now.

My oncologist wanted CT scans after 8 weeks, prior to my 4th treatment and we received some highly unexpected but fantastic news that all of the lesions on my lung had resolved and none were visible on the CT, and the two lymph nodes under my jaw bone that were enlarged had also resolved back to normal. Just hope for me and everyone else that it continues to work. I have lots of questions but I’ll save them for another day.

Leaving for MSK tomorrow morning to complete infusion #7 on 12/12.

My side effects so far have been highly sensitive skin under my arms, arm pits, and different parts of my body. I had two very small rashes that didn’t itch but lasted over a month each. Knees, hips, shoulders and hands ache but ibuprofen helps a lot. Fatigue comes and goes and had some difficulty determining where the fatigue from radiation stopped and the Keytruda fatigue started. Most significant side effect is my right jaw bone. The combination of parotid/ lymphendectomy, Head and neck radiation and now Keytruda prevents me from opening my jaw well. A lot of the side effects diminished significantly after infusion 6, especially the joint issues except for the jaw.

Overall it was a long year, with 6 procedures (7 if you include knee surgery on 9/22/16), radiation and now immunotherapy. I have finally been able to begin doing all the things I love to do. I have had great support from my family and friends. Now dealing with the issue of when to stop Keytruda, the balance between current mental need to continue and potential permanent physical issues that could occur. Next CT scans will be 1/25/18. The oncologist I’m seeing right now while my oncologist is on leave likes to complete the scans somewhere between infusions 8-10. Three weeks later than my normal schedule. He would also recommend going off after 6 months, I’ll evaluate that after a couple more good scans as long as blood work remains good.

Well, I went way longer than probably needed but if anyone has questions please ask. The staff at MSK has been fantastic. I have a lot of scars, but my surgeons work was fantastic. An additional shout out to Celeste, I visit you site frequently and appreciate all of the information regarding melanoma. I research it all. All of the sewing blogs is just frosting on top.

Thanks tomeveryone for taking the time to help, happy holidays and good luck to everyone. Please forgive typos.

Bill

 

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Anonymous's picture
Replies 8
Last reply 12/11/2017 - 3:08pm

Husband began keytruda every 3 weeks in Jan 2016, received infusions evwry 3 weeks (with no side effects other than some fatigue). Was off keytruda for 3 months due to brain tumor which was successfully removed 100 percent.
Now has been back in keytruda for 6 months and has experienced very severe swelling and joint pain. The doctor says it is a side effect. He is on oxycodone, morphine and a symthenic steroid..however the pain is still dehabilitating. He is now disabled. Anyone else experienced this? Thank you in advance and God Bless.

Pam anderson

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baesill's picture
Replies 3
Last reply 12/11/2017 - 11:22am
Replies by: cancersnewnormal, sister of patient, Anonymous

Because that’s what I just got. What is the best I can expect? Is two year survival even possible now? Has anyone received any good news after 9 tiny brain mets were discovered after failing ipi/nivo while on vem/cobi...and I’ve just had two doses of pembro thrown in for good measure. 

9 just feels like so many, right? 

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Polymath's picture
Replies 21
Last reply 12/11/2017 - 6:54pm

Aloha warriors, sorry for my absence from the board.  I needed time away from thinking about the melanoma and just get on with life.  

I just got results from my most recent scan, and I am celebrating a full year since my last surgery which cleaned house of my major tumors.  All clear, with no new progression.  I have been off all medications, for the year, and want to offer a message of hope.

Old-timers know I battled hard for four years.  I did it all.  Surgeries, radiation, targeted therapies, and immunotherapies.  It seemed nothing would stop the beast.  I was just beating it back, waiting for the next drug treatment approval.  Right up until my biggest surgery last December, which removed my spleen, engulfed with a grapefruit sized tumor, plus two other abdominal tumors, I had mostly non-stop progression. 

I have been lucky in that along with good care, my tumors have not attacked vital organs, but had non-stop invasive tumors pop up in many areas.  I have plenty of scars and damage, but here I am, feeling great when the statistics had me most likely dead by now.  It seems that although I was thought to be a non-responder to most everything, maybe, there is some lasting impact from the treatments.

Rather than get into any more details, I want to just thank those who supported me, and shared their wisdom and experience throughout these years.  If not for the advice I received here, I doubt I would be in this wondrous position.  I also feel so badly for those we lost, and hope their families are doing as well as possible. I hate this insidious beast.

I've been lucky, and have been my own advocate for my care.  Not fallen for the natural remedy peddlers who prey off of peoples fears.  I found a wonderful specialist who saved my life.  While this has just been one year, and I know I may need to go to battle again someday, I just want to wish all my brothers and sisters here, a wonderful holiday season.  Hang in there, be strong, and be well.

Gary

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/10/2017 - 9:03pm
Replies by: Anonymous, Jeff_in_FL

I feel guilty posting on this board. I’m sorry, but I need some persepective on my issue.

So 3 years ago I had a mole on my foot. It was blue, on my heel, solid, symmetrical, it looked like I stepped on a marker. Anyway, over a course of time it grew big. I didn’t witness this growth but I noticed it one day. I was in a panic. The mole grew bigger, and was now brown. I don’t know how, but it fell off. It more so peeled off. It left a perfect hole and regular skin was underneath. The hole healed up and never grew back. At the time I told some adults about this (I was about 12) and they reassured me I was fine. During the same time I made skin inspections noticing two ugly moles. One on the back of my arm and one on my lower back/love handle area.

Ive been told I have had these for my whole life, and I believe that, but they’re ugly.

https://imgur.com/gallery/UaT3c

Top: arm

Bottom: back

I also have worrying doupts on wether they have changed or not. I’ve been taking a record for the past 2 weeks and no change I believe. I’m going to a dermatologist in a unknown amount of time, possibly months. In the mean time I found out that swollen lymph nodes in your groin can mean melanoma, I’ve had one for 3 years (not that it appeared 3 years ago just that I’ve noticed). I also have one in my neck. Also, under my mole on my back I have a fatty lump that’s asymmetrical to the other side, yet again that’s been no there’s forever. The structure feels similar yet the one side feels bigger.

I'm very concerned and as a minor there’s not a lot I can do for myself except wait.

Anyways sorry for appropriating your forum :(

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ToddC's picture
Replies 2
Last reply 12/9/2017 - 5:35pm
Replies by: ToddC, Bubbles

Hi long term melanoma survivors. Time to chime in on the old MPIP board... let us know you are still alive and kicking!  I remember this board from years ago before it became run by the "MRF" which I'm not sure I believe in anymore but I'll avoid that discussion here.  I'm sure there are a lot of people like me that never accepted the drugs and found some natural ways to control this condition so let's hear your story again and give people here some hope.

I had stage 4 mel from arount 2008-2013 when some lifestyle changes I made seem to have made my condition go away and to my docs amazement it has not come back since. I recently had bloodwork and want to report back, no indicators of cancer and vitamin D level of 55. LdH below threshold, WBC and CRP is totally normal, everything looks perfect at age 53 now, thought I would die in 2013 but I'm still going strong. You can survuve this thing, your body has amazing recuperative ability. You just have to give it what it needs to win this fight baby!

Good luck everyone, I will spare the details in my case but I want to hear from anyone like me out there who made it through the worst of this and lived to tell about it.

Todd Conrow

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Tjvcc's picture
Replies 3
Last reply 12/10/2017 - 12:14pm
Replies by: jymarks2011, Becky, Bubbles

Hi,
30 / Male Boston MA
I posted 5 weeks back when I had my Spitzoid taken out. The doctor thought it was nothing, the path reports came back conflicting Atypical Spitzoid Unknown Biological / Spitzoid Melanoma.
Unfortunately it 5 weeks later, I have one of my 4 nodes in my groin  positive. The path says Sentinel lymph Node #1 Metastatic Melanoma is observed with levels and positive for strains 2 100 mart 1 MITT, -- HMB45 is Negative Tumor is present as scattered cells (they indicated there was not a lot.
Just looking for experience. I have heard the prognosis for Spitzoid melanoma is a little batter than traditional. I also have a pathologist who seems to think this could still be benign because the HMB45 was negative, I am sending to his lab to review.
Any comments would be great. treatments or stories?

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/8/2017 - 4:56pm
Replies by: Bubbles, k311335, Anonymous

Hi, all

My mother is ill. It all began with a heel. Depth more than 4mm. The operation was removed in June 2017. Histology showed melanoma. At the moment, the heel heals well. At the moment, there was a positron emission and computed tomography survey. The examination showed points up to 8mm in the lungs up to 10 pieces. There was a re-examination of the same results where they indicated that there were more of them.
The attending physician prescribes 4th degree and chemotherapy therapy.
At the moment, Mom feels like a good blood test is good.
Mom does not want to do chemotherapy therapy. Since the survey data is different and there is no single picture. Doctors do not want to deal with the patient.
An additional examination of the radiologist showed nothing.
Ultrasound of the lyophotic system of the inguinal region revealed nothing.
The question is, can doctors make mistakes?
Are there any specialists who can see the results?

Best Regards

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My husband, 64, had a pink bump on his leg that he has had for many years, which derm said skin tag.  It began to grow so I made him an appt to have it removed.  They sent it to path lab and the report was very confusing.  The lesion passed the FISH test as no melanoma but because of strange archtiture of the sample they indicated it should be treated as “atypical BAP-1 Deficient Spitzoid Melanocytic tumor of uncertain malignant potential.   It was listed as type nodular and BAP-1 deficiency at least 5.0 thickness and IV invasion level.  We had the excision done today as well as a SNB and am going crazy reading what this might be on the internet.  I have a call into the surgeon to ask if he can split samples and send to 2 different labs for review.  Has anyone heard/seen anything like this?  Our dermatologist indicated this was rare to have several pathologist review and come up with conflicting recommendations.  Help, I am going crazy. Thank you

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