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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lmccann2016's picture
Replies 4
Last reply 11/12/2016 - 4:51pm

Had wle and neck disection to left side of neck removal of all nodes that side. I am getting really concerned it's been 5 days swelling hasn't reduced and when u touched the swollen area it is hard. Has anyone had this recently and help me not worry. No fever. Just extremes tightness and swelling

Lisa McCann

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WallyE's picture
Replies 2
Last reply 11/12/2016 - 10:30am
Replies by: WallyE, debwray

Please can someone explain to me what the following means as per an MRI scan done on 2/11/16:.

Small subcentimeter aortopulmonary lymph nodes measuring 5 to 6 mm

Small right tracheobronchial lymph node measuring 4 mm

A calcified grunuloma is noted in within the left lung base (the middle lobe of my right lung was resected)

A wedge shaped hypo density noted with the lower pole of the right kidney represents a small cyst measuring 7 mm

A simple cyst is noted in the upper pole of the right kidney measuring 5 mm

There is a rim enhancing heterogeneous hypo dense periphery enhancing lesion measuring 44 x 34 x 38 mm (APxTRVxCC) related to the subfundal region,and greater curvature of the stomach inseparable from and superior to the tail of the pancreas. This is suggestive of recurrent disease.

I thought I was fast approaching permanent NED when I had 4 years of NED last year - then Mets to my stomach (total stomach removal underwent in Nov 2015) and now this new thing,

What does this all mean? The doctors appear to be coy in telling me at this stage - they are going to discuss the way forward at a meeting on Tuesday 8/11 and will contact me on Friday 11/11.

Could this be Melanoma Metastases of the Pancreas?

Thanks all for a wonderful forum for discussion,

Wally

One day at a time.

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/11/2016 - 4:16pm
Replies by: Anonymous, Toby0987

I was able to take a brighter picture of the mole from previous topic

https://imageshack.com/i/pnfMAIiWp

Just wondered what if anyone had any thoughts, if it looks serious, if i need a biopsy or if it even is a mole.

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wayward's picture
Replies 2
Last reply 11/10/2016 - 8:25pm
Replies by: wayward, Janner

My wife had noticed an abnomal spot on my back and asked me to goto the doctor I went to my GP doctor and she referred me to a dermatologist. The dermatologist did a biopsy and sent it to the lab and the results was that they found what thay called suspicious cells that could be precancerous. The dermatologist cut out that area along with a margin as a precaution. When they sent that to the lab the results was what he called stage 2 inside melanoma. He described the thickness as three sheets of paper and I'm not sure what that translates to in thickness. He said what happened to me was rare but does happen sometimes. He cut a larger area for a wider margin and the lab results was clear. I did have him do a full body scan and he did a bioposy of a mole but haven't got got the results yet. I will get the stiches out in a few days. I have a follow up every six months for the next two years at least.

The initial diagnosis was very scary but I do feel much better now.

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snow white's picture
Replies 6
Last reply 11/10/2016 - 10:59am

Well...my Dad is finally home.  He had his 1st dose of NIVO exactly 1 week ago.  He did fine, he said it took 1 hour.  Not much in the way of side effects, he said he felt slight flu like symptoms but not bad at all. He will go 1 week from today for his 2nd infusion.

When I went up to see him yesterday, he was very weak and tired.  He said he didn't sleep well.  He seems very tired, his color is off, he is not himself, kind of hunched over etc.  It scared me.  I came back down to my house and just cried. I am trying so hard to be strong, but it just kills me to see him this way. So far, I have been able to be strong and positive in front of him.  I want to push him a bit and get him up and walking around more, but I am not sure how hard I can push.  What scares me the most is that I know we have a very long road ahead of us and I am having a hard time thinking about anything else but him.  I know I have to be able to live my life with my family, but its so hard not to be focused all of the time on him. Funny thing is, he wants me to keep doing my "normal" rountine, but sometimes I fell like I am betraying him for laughing and having fun.   Ugh!

Sorry for rambling so much, I guess I needed to get this off of my chest and talk to people that understand.

I hope you are all doing well not matter what stage of this battle you are in.  HANG IN THERE!!!!!!

XO

 

Jennifer

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laulamb's picture
Replies 7
Last reply 11/10/2016 - 10:16am

Hello everyone,

Looking for any advice, April 2016 diagnosed Stage 3a, had 4 infusions of ipi at 3mg.  Just had 6 month CT scan and results came back with "indeterminate 4 mm left lower lobe pulmonary nodule".  I have only talked to the Dr through email but she has said what they are describing are normal variations.  I'm not buying that though, could this be melanoma?  I am really in a panic right now.  Any opinions are very much welcome! 

Thanks,

Laura 

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Polymath's picture
Replies 20
Last reply 11/9/2016 - 11:55pm

I normally keep my cool regarding my battle, but last night I must say the demons were running amok.  PET/CT results appear to show my 12-month run on ipi-nivo (with radiation), which provided some improvement and/or stability has come to an end.  My main problem is the splenetic masses.  A pair of orange sized tumors that have more or less merged into a very large, cantaloupe sized mass engulfing my spleen.  I knew things were not going well as I began to notice my ribcage being being pushed outward, and the invasion into the stomach area which has caused various appetite and discomfort issues.  OK, that's the venting part.  Now it's decision time.  I have looked into radiation again and determined the potential collateral damage to GI tract is very risky, but still under consideration.  Surgery to remove entire spleen is an obvious choice but both these treatments carry risk and potential long-term side-effects.  Ideally, immunotherapy would defeat this monster, and my doc has me pegged for a trial of IDO inhibitor combined with anti PD-L1 which sounds really good, but does not begin for several months.  But time is running out and the spleen issue is causing stresses on other systems that could cause massive internal bleeding and risk death.  So, anyone who had spleen removed?  Melanoma in spleen is unusual but somebody must have dealt with it.  I'd love to hear from you.  Radiation?  Or any luck with drug therapies defeating unusually large solid tumors?  Please chime in.  Best to you all in the battle.

Gary

 

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landlover's picture
Replies 7
Last reply 11/9/2016 - 10:48pm

Yesterday I received my PET CT results from U of M and although I do not know the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off), the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it.

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I ahve here to work it all out and for that I am thankful.

Peggy

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/9/2016 - 10:22pm
Replies by: Lhawkins, Whyland1, Cathy M

This is a very important post. I lost my husband to leptomeningeal disease from melanoma last month. I am looking to help someone truly in need of tafinlar and mekinist. It can save lives, it just couldn't for my husband due to how his disease progressed. I have meds left and I am not just throwing them away. Help me everyone to help someone else.

Please respond if you know of anyone.

 

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lmccann2016's picture
Replies 4
Last reply 11/9/2016 - 5:10pm
Replies by: lmccann2016, SOLE, debwray

HI everyone

I'm home and best rest had my WLE and neck dissection Nov 4th. Drain tube came out today recovering good.

Doctor talk to my husband after surgery I won't talk or see doctor until Nov 17th hope path report back by then. Anyhow he said I have a great chance of beating this surgery was success and I won't need radiation or chemo however will require immunotherapy which will be discussed on final path report.

One day at a time... just thought I would follow up and say thank you to all for ur support and crossing fingers it was just one lymph node and not more than that as we knew one was positive from fine needle.

Feeling ok tired no energy and in a lot of pain but nothing meds and rest can't help with. This wasn't as bad considering I had pregnancy worst then this surgery. The surgery was very comprehensive but I had a great doctor who is actually chief of oncology so I fell confident I am in good hands and which treatment is suggested be what I need to fight this demon away.

Much love from Canada Lisa xo

Lisa McCann

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/9/2016 - 4:54pm
Replies by: debwray

Does anyone have any info on maxillectomy?  Diagnosed stage 4 melanoma back in 2014.  Mel spread to sinus cavity and upper maxillary.  Done the interefron, IL-2, Yervoy & Nivo.  Currently in a genetic clinical study.  Showing some improvement but not at the point we had hoped to be by now.  Dr. says to keep moving forward with trail as he feels we're moving in the right direction.  The hope here is for tumor in upper maxillary to get small enough to have surgery and a maxillary obturator to be done.  From what I'm ready about this procedure scares me to say the least.  I'm having issues with the maxillary area and in constant discomfort.  My feeling has always been to get the cancer out, but again, this is such a horrifying thought!  Please, any insight is much appreciated. 

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KDE's picture
Replies 7
Last reply 11/9/2016 - 4:46pm
Replies by: KDE, Janner, Anonymous

Doctor has told me that I have a melonoma in situ. The pathology report diagnosis does say in situ, however it list the pathologic stage as pT1a. So am I in situ or stage 1? The following is the info on the report. Thanks so much for any help with this. 

Final microscopic diagnosis: Melanoma; the in situ component extends to the tissue edge. 

Type: superficial spreading  

Tumor Breslow thickness: 0.35mm

Anatomic level of invasion: Clark level lll

Ulceration: absent

Dermal mitotic rate (mitosis/mm2): 0

Microsatellitosis: none identified 

Vertical growth phase: absent

Regression: absent

Angiolymphatic invasion: not identified 

Neurotropism: not identified

Tumor infiltrating lymphocytes: non brisk

Precursor lesion: none identified 

Pathologic stage: pT1a

comment: sections show a proliferation of atypical melanocytes in the epidermis and dermis. The junctional component is disposed in a confluent fashion with pagetoid upward scatter. The dermal component is present in small aggregates and single cells without maturation. 

 

 

 

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JoshF's picture
Replies 18
Last reply 11/9/2016 - 3:24am

I haven't been checking in much lately. So I hope this finds everyone well. I think often of all of you and pray you're well. I've had a lot of anxiety and crap going on in my head lately. Anyway, I was in Houston this week at MDA for 6 week scans post TCell infusion. So bottom line I'll take this as a win though as you can all attest to, we want better. The brain MRI showed nothing new which is great after having gamma knife Aug 19...big win! The CT Scan showed nothing new and minimal progression in few leisons. The team referred to a 3-8% progression. While we'd like things just disappearing, it's a process and I'm told it can take time as it been just over a month. So that leaves us committed to completing the trial in regards to treatments. So I did dose #3 of ipi(just an FYI with all treatment I've done...that was dose #10 of ipi for me). I'll go back right before Thanksgiving for final dose. Then in mid Dec we'll repeat scans and go from there. They're also going to biopsy a sub-q to test. Whew!!! This is a crazy life we live but I'm living and get to hug my wife & kids so I'll deal with it. 

Finally, I did have a few sub q's shrink up but not go away totally. Some of you will recall last posts asking questions about this. They (MDA) don't include that in progression etc..as it appears they're not measuring. Just that nothing new showed up. I'm scared and hope my immune system kicks into high gear. Though I'll take this latest news as positive since I've only been kicked down since May. Love and peace to you all!! Thank you for your unending support!!

Josh

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/8/2016 - 5:42pm
Replies by: landlover, youngann, debwray

Yesterday I recieved my PET CT results from U of M and although I do not know exactly the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off),  the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it. 

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I have here to work it all out and for that I am thankful.

Peggy

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Anonymous's picture
Replies 14
Last reply 11/8/2016 - 5:22pm
Replies by: Ed Williams, SOLE, Anonymous, laulamb, youngann

folks my husband has been diagnosed with stage IIIb melanoma with ulceration and 50 cells of micro mets found in his sentinel node biopsy.  we are trying to make some decisions on next steps.  one is CLND or no CLND which i posted seperately.

Another decision is what kind of adjuvant therapy. one doctor (known in the field ) is reommending 3mg/kg IPI (not standard for stage III).  he is recommending the lower dose due to toxicity of 10mg IPI.  another doctor is saying he would go with standard 10 mg IPI for stage III.

To decide, i suppose it would help to know the history behind what led to the standard dosage of 10mg/kg for stage III vs 3mg/kg for stage IV?  was it something random like at the time of IPI trial for stage III, the 3 mg dosage was not yet proven for stage IV? or is it that they believe you need a stronger dose to get rid of the mico mets vs tumor mets?

we also will try to get into IPI vs PD1 trial and see if get PD1.  Are there different dosages of PD1 in different trials?

what else?  should we ask for CTL4 and PD1 response staining before deciding?  

what about PDL1 testing?  can we get anti-PDL1  treatment anywhere?

thank you so much for your guidance.

 

 

 

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