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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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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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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