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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Kev12's picture
Replies 15
Last reply 7/10/2013 - 10:56am

Hi all

 

Firstly, I would like to say thanks for all of the sharing on this forum. My first reaction to my diagnosis of nodular melanoma was to find out everything about this disease that I could and this forum has proven to be invaluable in that regard!

As with most people who receive the dreaded news, I could not believe that something like this could happen to me! I was diagnosed last week and had bloodwork done yesterday, CT scans of chest, abdomen and pelvis this morning (still waiting for the results which is freaking me out!) and I am scheduled for a lymphosintigraphy tomorrow and surgery to remove my sentinel lymph nodes on friday and also to remove more tissue etc from the site of the melanoma.

 

I have been on a rollercoaster ride this far and my moods swing from total depression to being remarkably candid about the whole thing- somehow trying to justify that I will not have any lymph node or further involvement!

 

I have literally spent hours trying to understand every word in my pathology report as it simply scared the life out of me when I first read it. 

Briefly, I have a 1.3mm nodular melanoma on the inside of my thigh just above my knee. It is not ulcerated but has a mitosis rate of 4. No satellitosis was seen nor any intravascular or perinerual infiltration. It is also listed (for what its worth) as a Clark Level III. 

 

What I cannot fing out is what the following means and it is freaking me out! Can anybody tell me what the Appendigeal Sheath is? My pathology report mentions that it is not within the appendigeal sheath? I have no idea if this is a good thing or a bad thing?

 

It seems that the melanoma has invaded my dermis (clark level III) but I dont understand how this is possible? According to the path report there is no loss of the rete ridge architecture and no fibrosis in the dermis. I am definitely not a doctor, nor do I profess to have a cooking clue about what half of this all means, but when I looked at what the rete ridge is it seems to be on the boundary of the epidermis and the dermis? If the rete ridge has not been affected then how has the melanoma invaded the dermis? They also mention that there is a mild chronic inflammatory cell infiltrate in the dermis. I have no idea what that means?

Apologies if I seem to be overly analysing all of this but I am freaked out and trying to understand exactly what is happening to me. I am holding thumbs that I dont have any mets anywhere but it is all quite overwhelming! I got married 2 months ago and it freaks me out to think about what I am most likely going to put my (incredibly sweet and amazing and supportive) wife through. The guilt is overwhelming.

 

Thanks

 

K

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flvermonter's picture
Replies 1
Last reply 7/3/2013 - 8:56am
Replies by: Tina D

The ups and downs with melanoma is so frustrating. Good news: we went to a tecommrnded radiation oncology in Ocala today. he is going to radiate the lung cancer and melanoma st the same time. he ordered a petscan to review first before the radiation and will stasrt the radiation treatment end of next week. he is also introducing us to a medical onc to get my husband in one of the trials. Moffitt wanted to do separate radiations snd said he no medical onc, just the radiation. never understood that.

bad news: took my husband to er tonight with a 102 fever. he has an infection where the drain was ( Moffitt removed it yesterday). now the petscan for tomorrow has yo be cancelled for a week and treatment moved out another week.

we were thrilled to have a doctor who said yes let's treat both with radiation at the same time.. and let's get you in a trial.

Hugs to all, patients and care givers.

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mclaus23's picture
Replies 4
Last reply 7/6/2013 - 10:49pm
Replies by: awillett1991, mclaus23, Anonymous

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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mclaus23's picture
Replies 0

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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NYKaren's picture
Replies 13
Last reply 7/3/2013 - 2:09pm

Well, it's done. Eleven mets instead of seven. Doc believes it's because the MRI they use for the Gamma Knife is many times stronger than than the standard MRI--it picks up much smaller mets.
I enjoyed lots of sedation--the metal headpiece wasn't fun but livable on drugs.
He's optimistic that in 28 days new MRI will show stable mets & no new growth, then on to PD1.
The case was long--arrived @ 7:30 am and left @ 3:pm. Tired & resting now.
Thanks,
Karen

Don't Stop Believing

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AndyT's picture
Replies 10
Last reply 7/8/2013 - 8:52am

Hi,

my wife is 36, first melanomsa mole in 2010, excision, sentinel node was positive. Went on interferon for 11 months. We had two wonderfuly years after that with reguar check-ups. Last eptember elevated markers show a grave picture - stage IV with one large lesion  and one smaller lesion in abdomen area, some minor lesions in the lungs. We joined a clinical trail with zelboraf, which worked well for 8 months - lung lesions remained the same, small abdomen lesion diappeared, the large one was a bit smaller. Just this week the latest CT results came in - the large lession is progressing and we had to quit Zelboraf.

Our doctor is now suggesting we try chemotherapy (dacarbazine). Reading a lot on melanoma we were hoping for ipilimumamb, but she said it only works with stage IV M1a or M1b patients, and not with M1c patients?! (M1c=Metastasis to other organs, OR distant spread to any site along with an elevated blood LDH level.)

I would be so greateful if anybody could please confirm or deny this? Also, would you have other suggestions - should we say not to dacarbazien, get a secod opinion (any suggestions for good written review of mediacal records by mail) or rather search for clinical trials?

There are these two we might be eligible:

1) A Randomized Open-Label Phase 3 Trial of BMS-936558 (Nivolumab) Versus Investigator's Choice in Advanced (Unresectable or Metastatic) Melanoma Patients Progressing Post Anti-CTLA-4 Therapy

http://clinicaltrials.gov/ct2/show/record/NCT01721746

2) A Phase 3, Randomized, Double-Blind Study of Nivolumab Monotherapy or Nivolumab Combined With Ipilimumab Versus Ipilimumab Monotherapy in Subjects With Previously Untreated Unresectable or Metastatic Melanoma

http://clinicaltrials.gov/ct2/show/NCT01844505?recr=Open&cond=%22Melanoma%22&cntry1=EU%3AIT&rank=10

Thank each and everyone for your replies, I wish all the best to you, stay positive!

Andy

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Anonymous's picture
Replies 1
Last reply 7/3/2013 - 3:41pm
Replies by: casagrayson

I am 19, never been to a tanning bed, and have no family history of skin cancer. In 3 months a dark, misshapen mole with a yolk appeared on my temple. After removing it and sending it to a pathology lab, they found that it was atypical and possibly melanoma in situ developing. However, I am confused and getting antsy because my Derm is sending the biopsy in to a melanoma specialist for a second opinion, because the first pathology revealed a traumatized nevus (?) and asked if I had previously had surgery in that area or an injury. I have not had any injury or surgeries on my face, so now I am not sure what my Derm is thinking or what to expect back on the second opinion. Any similar experiences?

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I am 19, never been to a tanning bed, and have no family history of skin cancer. In 3 months a dark, misshapen mole with a yolk appeared on my temple. After removing it and sending it to a pathology lab, they found that it was atypical and possibly melanoma in situ developing. However, I am confused and getting antsy because my Derm is sending the biopsy in to a melanoma specialist for a second opinion, because the first pathology revealed a traumatized nevus (?) and asked if I had previously had surgery in that area or an injury. I have not had any injury or surgeries on my face, so now I am not sure what my Derm is thinking or what to expect back on the second opinion. Any similar experiences?

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joy_'s picture
Replies 10
Last reply 10/22/2013 - 1:22am
Replies by: Anonymous, Pink, joy_, Bubbles, King, BrianP, flvermonter

We are going to Moffitt next week for a consult with Dr. Weber.  Just wondering if anyone out there has any tips we should know about.  We are planning to fly to Tampa and back to Atlanta in a day so I am guessing renting a car would be our best option for transportation? 

As far as the melanoma goes - my husband has been on a Zelboraf/Yervoy trial.  He has finished his 3rd infusion at 10mg/kg.  Fatigue has been his main side effect, however in the past two weeks he has had a LOT of hip & lower back pain with some muscle weakness and numbness in soles of his feet.  He had an MRI of the lower back yesterday, and nothing abnormal was seen so they are scheduling him for a full body PET ASAP.  Also his bloodwork was ok with only elevation in LDH (I haven't seen the report but don't think it is crazy high).  They haven't been able to determine what is causing the pain - nerve inflammation or bone mets or what.  So far we haven't seen any improvement and he has new subq tumors.  Although I know it is still too early to tell if he is an ipi responder, we are wondering if now is the time to try to get him into a PD1 trial.  Guess that's what we will discuss with Dr. Weber.

Thanks again for any information or insights you wonderful folks are willing to share!  I will update when we find out more in case our experience helps someone else in future.  (I know that we have benefited from many of your posts.)

Tracy

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k.s's picture
Replies 2
Last reply 7/3/2013 - 7:36pm
Replies by: k.s, 1derdog

Anyone else have both diseases?

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Anyone else have both diseases?

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CLPrice31's picture
Replies 4
Last reply 7/1/2013 - 9:19pm

Hi everyone. It has been a while since I've posted. I hope everyone is doing well.

I am still in a double blind clinical trial with a placebo or 10/mg of ipilimumab. I'm in the maintence phase so I only receive the infusion once every 3 months. My last dose was on June 14th. My scans on June 13th showed no evidence of disease. The reason I'm writing is because I went in for routine bloodwork today, like I do every few weeks after my treatment, and my oncologist called this afternoon to let me know my liver enzymes are elevated. Has anyone else experienced this? Was it related to the drug?

I'm to return a week from today for more bloodwork. If the numbers are the same, or higher, he said we would have to do "further investigation."

Anyone, advice?

Thank you in advance.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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Anonymous's picture
Replies 12
Last reply 7/2/2013 - 12:23pm
Replies by: Anonymous, Richard_K, Janner, HopefulOne

I was diagnosed with MM in Dec. 2011. I had a WLE 1 full cm. margin to level of fascia one week after being diagnosed. I went to an oncologist a month later, even though my derm said it was not necessary. The oncologist said, "They took a pretty big chunk out of your leg." She reassured me that I had done everything that is required for my stage and that my scar looked great. I know that I have learned a lot about this over the last year and a half and I wanted to get opinions from all of you on my path report. I have visited this site often over the past year and have finally built up the courage to join. I realize that support is necessary forever. I am a 35 year old mother and I always worry about this cancer returning. I sometimes feel like I worry about this too much and I could use your advice and opinions. I know you are not all drs.but I believe patients have a lot to share too, especially on the more personal levels. Thank you. I am also wondering if anyone knows anything more about this study that was just published in the, Journal of American Surgeons. When I read studies like this I realize that this is something that will affect me forever. I do appreciate my life and try to live each day to it's potential, but some days I wake up with MEL on my mind.

http://www.journalacs.org/article/S1072-7515(13)00225-1/abstract

The original mole was one that I had forever. It started to change after my pregnancy. My daughter is now 10

FINAL DIAGNOSES: Melanoma, narrowly excised in planes of sections examined (skin, left medial lower leg, shave biopsy)
Histological subtype: spitzoid
Breslow thickness: .31mm
Clark level : II
Ulceration: none
Mitotic rate: none
vertical growth phase: no
vascular invasion: no
angiotropism: no
neural invasion: no
microsatellites: no
features of regression:
Early (TILS) Yes, non-brisk
Intermediate (angiofibroplasia with or without TILS): No
Late ( fibrosis and loss of rete ridges) : no
precursor lesion: none identified
predominant cell type: spitzoid
microscopic description: Sections of a scoop excision of skin reveal an atypical compound melanocytic proliferation. The junctional melanocytes are plemorphic and show both prominent nucleoli and nuclear pseudo inclusions. There are expansile nests and single cells with focal pagetoid upward migration. The underlying papillary dermis contains fibroplasia. Patchy perivascular lymphocytic infiltrates and a rare nested melanocytes. Dermal mitotic figures are not identified.

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I was diagnosed with MM in Dec. 2011. I had a WLE 1 full cm. margin to level of fascia one week after being diagnosed. I went to an oncologist a month later, even though my derm said it was not necessary. The oncologist said, "They took a pretty big chunk out of your leg." She reassured me that I had done everything that is required for my stage and that my scar looked great. I know that I have learned a lot about this over the last year and a half and I wanted to get opinions from all of you on my path report. I have visited this site often over the past year and have finally built up the courage to join. I realize that support is necessary forever. I am a 35 year old mother and I always worry about this cancer returning. I sometimes feel like I worry about this too much and I could use your advice and opinions. I know you are not all drs.but I believe patients have a lot to share too, especially on the more personal levels. Thank you. I am also wondering if anyone knows anything more about this study that was just published in the, Journal of American Surgeons. When I read studies like this I realize that this is something that will affect me forever. I do appreciate my life and try to live each day to it's potential, but some days I wake up with MEL on my mind.

http://www.journalacs.org/article/S1072-7515(13)00225-1/abstract

The original mole was one that I had forever. It started to change after my pregnancy. My daughter is now 10

FINAL DIAGNOSES: Melanoma, narrowly excised in planes of sections examined (skin, left medial lower leg, shave biopsy)
Histological subtype: spitzoid
Breslow thickness: .31mm
Clark level : II
Ulceration: none
Mitotic rate: none
vertical growth phase: no
vascular invasion: no
angiotropism: no
neural invasion: no
microsatellites: no
features of regression:
Early (TILS) Yes, non-brisk
Intermediate (angiofibroplasia with or without TILS): No
Late ( fibrosis and loss of rete ridges) : no
precursor lesion: none identified
predominant cell type: spitzoid
microscopic description: Sections of a scoop excision of skin reveal an atypical compound melanocytic proliferation. The junctional melanocytes are plemorphic and show both prominent nucleoli and nuclear pseudo inclusions. There are expansile nests and single cells with focal pagetoid upward migration. The underlying papillary dermis contains fibroplasia. Patchy perivascular lymphocytic infiltrates and a rare nested melanocytes. Dermal mitotic figures are not identified.

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Tracy Chicago's picture
Replies 2
Last reply 7/2/2013 - 11:16pm
Replies by: lunchlady, Gene_S

Please read the following article http://articles.mercola.com/sites/articles/archive/2013/07/01/vitamin-d-benefits.aspx and then add your comment about your melanoma story. This Dr. Mercola has missed the boat big time with this article and needs to be corrected with real life stories! 

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