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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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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HopefulOne's picture
Replies 5
Last reply 7/21/2013 - 6:49am
Replies by: HopefulOne, Gene_S, hbecker

Hi all ... tomorrow (July 2) my husband starts ipilumumab. I'm hopeful yet incredibly nervous. I've detailed our journey in my profile but basically just over six weeks ago he had a melanoma tumor removed that was growing around his spinal cord and was also treated with radiation (as they couldn't remove the whole tumor). Just within the past day or two, he has been more like himself. Less pain though some fatigue and bowel issues from the radiation. Now we start the next phase of his treatment with his first infusion of Yervoy and I'm just so worried about how he'll react to it. I know nobody can predict this and I'm not sure the purpose of my post except to hear some encouraging words of support. I'm sorry - this is my first post though I've read many of your moving stories. I hope and pray that someday I'll be able to offer others on here the same support and a story of success that brings hope. Thanks. Kimberly

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AllyNTAus's picture
Replies 9
Last reply 7/8/2013 - 10:52pm

So I went for my scans and reviews today at the end of cycle 4 on the Novartis BRAF/MEK inhibitor combination. I had a feeling that things might not be looking all that good because I just haven't been feeling 100% well for the last few weeks, nothing really solid I could define except for some very grumbly, gassy abdominal symptoms that have waxed and waned, so if anything I was thinking there might be something going on in my intestinal tract.

What I wasn't expecting was to be told that I have a fairly large cardiac met, 30mm diameter, 40mm high, in the right atrium. What surprised me even more was to see the report saying that this met was apparently "more subtle" and somewhat smaller on my previous 2 scans (May and April), but the reports on those two scans didn't mention it at all! I'm a bit bemused and peeved about that.

Various lymph nodes throughout my lower abdominal/pelvic region have grown too and there are some new nodules showing up, so it has really taken off.

So I am seeing a cardio thoracic surgeon on Wednesday to discuss the possibility of surgical removal. If this isn't possible then it will be radiotherapy. Clearly the cardiac met is serious stuff and needs some immediate aggressive treatment. After I am well enough the plan is to start on Ipi, which thankfully has just been put on our government subsidised medicines list. And my doctor tells me that if Ipi doesn't work then
Anti PD1 should still be an option, there are just not any trial seats for it (either alone or in combo with Ipi) just at the moment.

Aargh what a rollercoaster! Would be interested to hear from anyone else with experience of cardiac mets.
Ally

A bad day's fishing beats a good day's work everytime

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toes123's picture
Replies 2
Last reply 7/2/2013 - 12:21pm
Replies by: Anonymous

I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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I have scheduled a visit with a doctor but in the meantime can someone give their opinion if this looks like a early stage melanoma ? I am worried

because it is on the side of my toe ??? 

http://postimg.org/image/973xrh8dt/

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deardad's picture
Replies 2
Last reply 7/2/2013 - 5:04pm
Replies by: deardad, benp

Hi just wondering if anyone knows how benp from Darlinghurst is doing? He hasn't posted here for a while. Hope you are doing ok.

Nahmi from Melbourne

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http://clinicaltrials.gov/ct2/show/NCT01738139

The goal of this clinical research study is to find the highest tolerable dose of the combination of ipilimumab and imatinib that can be given to patients with advanced cancer. The safety of this drug combination will also be studied.

Ipilimumab is designed to increase the immune system's ability to fight cancer.

Imatinib is designed to bind to certain proteins on the tumor cells, which may prevent the cells from growing.

I'm me, not a statistic. Praying to not be one for years yet.

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Hi Linda,

Is SRS a go for Bill Monday?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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François's picture
Replies 1
Last reply 6/30/2013 - 8:50am
Replies by: Tina D

I just finished my 6th month on Zelboraf, 8 pills a day, having CT scan every 8 weeks showing that 3 lungs mets disappeared since the very beginning of the treatment. Last week ct scan results showed 3 new 20 mm spots on the liver. Radiologist suggest that they could be mets but my onc is a bit surprised and He book me a Pet scan next week. He doesn't believe that lungs mets didn't come back at the time that liver mets are 20 mm, considering that previous ct was cleared. I am very disappointed because I feel very good, no pain, except typical side effects. Two years ago after being 2 weeks on the hospital after surgery and having 3000mg every day of Paracetamol, I had the same problem with a Pet that showed 2 doubtful met that finally were nothing. Today, due to Vemurafenib, I have my GGT up in the clouds raising at 600/800 and I hope it could be the answer. I also had previously fatty lever due to alcohol ingestion. I will keep you informed.

François

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flvermonter's picture
Replies 2
Last reply 6/30/2013 - 3:47pm
Replies by: flvermonter, kylez

Hello again,

we had great news on the lung cancer once radiation..only 5 SMS radiation treatments. meet with melanoma once this wed. for plan of radiation.

however, his left arm was so swollen and now with the compression sleeve is sost back to normal. the swelling in his legs we went yo our MD. he did ekh and was OK. the blood work came back with indication of Cong heart failure. we need to meet with the MD. will that stop his radiation? he doesn't want to tell Moffitt afraid he wont get the treatment. I am so afraid and stressed.

Hugs to all, patients and care givers.

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pamkepler's picture
Replies 1
Last reply 7/2/2013 - 3:38pm
Replies by: 5374brian

My husband has been diagnosed with metastatic melanoma oct 2012. He has been on Yervoy, Zelboraf, and now anti pd1. I was looking for caregivers of patients that are on this same journey:) Blessings to those fighting patients and caregivers!!!

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