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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justlittleoleme's picture
Replies 3
Last reply 3/2/2012 - 9:45pm

Thought I would update you all on what has been happening with my hubby.

He finished Ipi infusion #4 on 2/6/12.  Admitted to hospital on 2/17/12 with ipi induced colitis.  Five day hospital visit.

Wednesday we visited with a liver specialist as his liver enzymes continue to escalate.

Fast forward to today.  Hospital admission #2.  Liver biopsy performed an hour ago.  Likely he has ipi induced hepatoxicity.

CT scans from a week ago now show 5 hot spots on spine and right pelvic region.  We are planning to do a bone biopsy once they get the liver functioning properly.  Dr. all but assured us that there is no more immunotherapy for him.  If the spots show up as melanoma, pretty sure it is chemotherapy.  What at this point I don't know.

I am at a loss.  The spots weren't there in November when he did his scans to get into the ipi trial.  That concerns his dr.

Pray that we have a short hospital stay.  Our youngest son's 9th birthday is tomorrow and we are in the hospital 3 1/2 hours away.


We don't know how strong we are until being strong is the only choice we have.

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boot2aboot's picture
Replies 11
Last reply 3/5/2012 - 4:33pm

If anyone is like me, very low on money and can't afford airfare, and incredibly frustrated with the lack of help american cancer society offers -what a joke- i want to share this information with you:

Southwest has a program that will fly you to your cancer treatments

you do have to be able to walk unassisted , but if you can...Here is the info

Call Amanda  Raneri at:



tell them boots sent you

don't back up, don't back down

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Havent posted in a little while, but I normally check the site daily but don't have much to add as I'm fairly new to this horrendous cancer. I went on Tuesday to have my saliva gland removed and approximately 20 lymph nodes removed from my face and neck after I had a positive SLNB. Hoping this set comes back clear, but so far I haven't been so lucky even having a melanoma of .93 it managed to make it to my SNLB. My face on that side is a little sunken in and I'm having a hard to eating anything of substance as my face is still numb and not moving very well on that side. I'm suppose to go and have my drain tube taken out next week. I'm hoping to get my facial movement back after the swelling goes down. I will post up the results when I get them. Thanks for everyone the post on this board as I always find really good information and your stories of survival give me great hope!

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Birdwatch's picture
Replies 3
Last reply 3/2/2012 - 7:39pm

I was diagnosed in April 2011 with melanoma on my arch of my left foot.  Diagnosed at stage II.  I don't understand all of this and have read several postings.  I had surgery to remove and had lemph nodes tested.  Nodes all came back negative.  I have continued seeing dematologist and a cancer specialist.  They infomed my that they got it all.  How can you rest ones mind.  I lost a sister 15 years ago with melanoma as well.  Yesterday I found a bump, lump to the left of my sternum.  How would you proceed and what do you think I should do?

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lhaley's picture
Replies 8
Last reply 3/2/2012 - 5:11pm

I am so excited! Just took the last dex that I have been weaning!  Started Oct 4th or 5th.   I am getting around much  better but have a far way to go, today was a big step!

My eyes are very slinty from all of the swelling and yesterday I was exercising .... noticed right afterwards that there is now blood in the white area.  Like I said there is still a far way to go. They are starting me today on mild Lasix so I can get some of this swelling down. Pants are so tight on my waist but fall down off of my hips and legs!  That will all solve itself.

I've worked hard on being able to get to the floor and getting back up. Savannah (2 year old granddaughter) is coming for the weekend. This will be the first time I've actually been able to play with her since before Christmas.  This is a weekend of celebration for us.


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gtown's picture
Replies 8
Last reply 3/5/2012 - 4:33pm
Replies by: gtown, Janner, DonW

went down to Penn for checkup today. No tests or anything (had clear lung X-rays 2 months ago). The doctor who was filling in for my doctor mentioned that the lack of inflamation found around the excision site was not a great sign, she said it showed the body's immune system when fighting cancer would show inflamation. She said this after being pressed by me (I ask ALOT of questions). Has anyone else ever heard of this before? I guess like many of you, I get anxiety ridden when I go for tests, checkups etc. I have  real up and down days leading up to tests etc. Some days I think I'm doomed and other days I feel positive. I'm thinking about seeing a shrink just because alot of people don't want to hear about it. So anyhow has anyone heard of the inflamation and secondly has anyone gone to counseling over this?   

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Dual Inhibition of VEGF and c-MET in Cancer Promises to Decrease Metastasis

A combined dual inhibition of vascular endothelial growth factor (VEGF) and c-MET is showing promise in preventing tumor invasion and metastasis. The data thus far are in a laboratory model of pancreatic neuroendocrine tumors (PNET). The results are published in the journal Cancer Discovery.

Neuroendocrine Pancreatic Tumor—main pancreatic duct (MPD), tumor (T), portal vein (PV), splenic vein (SV), superior mesenteric artery (SMA)

According to the lead author of the study, Donald M. McDonald, MD, PhD, Comprehensive Cancer Center, University of California, San Francisco, this study was designed to demonstrate a proof of principle. The concept is likely to extend to other tumor types.

McDonald explained that the inhibition of both VEGF and c-MET signaling has a synergistic effect on tumors that leads to slowing down of the tumor growth and decreased metastasis.

"The translational significance of the work is not necessarily to demonstrate a promising approach in PNET, but rather to show in general that targeting MET simultaneously with VEGFR is a better general approach than targeting the VEGF pathway alone without inhibiting MET," says Dana T. Aftab, PhD, part of the translational research team at Exelixis, and coauthor of the Cancer Discovery paper.

Many cancers show increased c-MET activity and mutations, including breast, liver, lung, kidney, thyroid, and ovarian cancers. Deregulated c-MET signaling has been shown to be associated with a more aggressive tumor phenotype.

McDonald and his team assessed the role of c-MET signaling when VEGF signaling is inhibited using a pancreatic neuroendocrine tumor mouse model and a second model that exhibited late-onset aggressive and metastatic tumors when the mice are in old age. The range of timing of tumor onset, including the very late-timing in the one model uniquely allows the assessment of whether the aggressive tumor characteristic can be advanced or reversed.

"Because tumors in [one of our mouse models] naturally become more invasive and metastatic with age, but generally do so near the time the mice succumb, this model provided the opportunity to determine whether aggressiveness could be advanced, delayed, or reversed by treatment with a c-MET inhibitor," explained McDonald.

Previous laboratory research showed that while inhibition of VEGF decreased tumor size, there is also a downside. According to Dana T. Aftab, "increased invasiveness after anti-VEGF therapy has been studied in the clinic most extensively in glioblastoma, where frequent imaging with high resolution techniques is standard."

The researchers now show that c-MET expression and activity increase upon VEGF inhibition and tumor hypoxia is elevated. When both the VEGF and c-MET pathways were inhibited, invasion and metastasis went down. This effect was also observed in mouse models of two more types of pancreatic cancers.

The team used a murine anti-VEGF antibody. The c-MET inhibitors used were crizotinib (Xalkori) and PF-04217903. Crizotinib was approved last year for metastatic non–small-cell lung cancer that harbors the EML4-ALK fusion gene. Crizotinib works by inhibiting both the anaplastic lymphoma kinase (ALK), as well as the tyrosine kinase c-MET. PF-04217903 is currently in phase I trials as a monotherapy for a range of advanced solid tumor types.

Cabozantinib, an oral, small-molecule inhibitor, blocks both c-MET and VEGF signaling. "A trial for cabozantinib in patients with pancreatic neuroendocrine tumors will open for patient recruitment soon," said Aftab. "However, the translational significance of the [currently published] work is not necessarily to demonstrate a promising approach in PNET," he added.

The drug is showing promising results in early-stage clinical trials. There was promising activity in metastatic medullary thyroid cancer (MTC) in a phase I trial published last year in the Journal of Clinical Oncology. Of 35 patients, 10 showed a partial response, a notable achievement for a disease that has no standard treatment options. A phase III medullary thyroid clinical trial of cabozantinib further showed an almost three-fold improvement in progression-free survival (PFS) compared to placebo in results announced last October. The median PFS in the cabozantinib arm was 11.2 months compared to 4 months in the placebo arm (P < .0001). The full results will be presented at a clinical meeting.

"We have evaluated cabozantinib in many preclinical models with generally good results, but to my knowledge the only careful examination of VEGF plus MET inhibition, using combinations of selective inhibitors, is [this Cancer Discovery paper]," said Dana T. Aftab.

Activity with cabozantinib was also seen for many solid tumors. In a phase II trial presented at the 2011 American Society of Clinical Oncology annual meeting, cabozantinib showed an ability to shrink bone metastases in prostate cancer, breast, and melanoma patients. It also showed activity in ovarian, and prostate cancers, and preliminary data from a phase II liver cancer trial shows an increased progression-free survival for both treatment-naïve and previously treated patients.

McDonald and his team are already working further along these lines of research. "We are continuing to study the effects of c-MET inhibitors on tumor invasiveness and metastasis," he says.

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

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metastatic uveal melanoma
Ana C.A. Frota,* MD; Alexandre N. Odashiro,*† MD, PhD; Patricia R. Pereira,*† MD;
Bruno F. Fernandes,* MD; Katyanne Dantas Godeiro,* MD;
Joao Pessoa Souza Filho,*† MD, PhD; Miguel N. Burnier, Jr.,*† MD, PhD
Case report: We report a case of choroidal melanoma metastatic to the liver diagnosed by fine-needle
aspiration.The biopsy sample was immunostained for COX-2 and c-kit.
Comments: Accurate diagnosis and identification of potential therapeutic targets are important for
subsequent therapy and can be achieved by radiologically guided fine-needle aspiration biopsy.
Observation : Nous signalons un cas de mélanome choroïdien métastatique au foie, diagnostiqué par
ponction-biopsie à fine aiguille. L’échantillon obtenu a été immunocoloré pour la COX-2 et le gène c-kit.
Commentaires : Il importe d’établir un diagnostic précis et d’identifier les cibles thérapeutiques possibles pour
la thérapie subséquente; la ponction-biopsie à fine aiguille (PBFA) guidée par la radiologie permet d’y parvenir.

Malignant uveal melanoma (UM) is the most common primary intraocular tumour in adults, and the liver is the most common site for metastases. The use of fine-needle aspiration biopsy (FNAB) for diagnosis of metastatic UM to the liver has been described by Liu et al1 exhibiting successful rates.2,3 Sensitivity reported in the literature ranges from 67% to 100% and specificity from 80% to 100%.4 To our knowledge, the study of immunohistochemical expression of the COX-2 enzyme and c-kit protein and their role in metastatic UM cells obtained by FNAB has never been described.
A 78-year-old man was referred to the oncology clinic of the Montreal General Hospital, McGill University for
evaluation of a choroidal mass in his left eye. Fundoscopy revealed a pigmented, well-circumscribed tumour in the
choroid, displaying low reflectivity on A-scan ultrasound. The tumour measured 9 mm × 6 mm on its basal diameter and 5 mm in height. The diagnosis of choroidal melanoma was established and the patient was treated
with iodine-125 episcleral brachytherapy. After 3 years, abdominal computerized axial tomography scans
revealed hepatic, mesentery, and spleen lesions. Liver FNAB under ultrasound guidance confirmed metastatic
melanoma, epithelioid cell type predominant. Immunohistochemistry for COX-2 and the c-kit protein
CD117 was performed in the sample, revealing positivity for COX-2 (Fig. 1) and negativity for c-kit.
COX-2 is a prostaglandin synthase involved in human carcinogenic processes such as angiogenesis, invasion,
and metastasis.5 The increased expression of COX-2 has been identified in several malignant diseases including
From *the Department of Ophthalmology, Federal University of São Paulo, São Paulo, Brazil, and †the Henry C. Witelson Ocular Pathology Laboratory and Registry, McGill University Health Center, Montreal, Que.
Originally received Dec. 2, 2005. Revised May 29, 2006 Accepted for publication July 13, 2006 Correspondence to: Ana Carolina de Arantes Frota, MD, 3775 University St., Lyman Duff Building, Rm. 216, Montreal, Que.; fax 514-398-5728;
This article has been peer-reviewed. Cet article a été évalué par les pairs.
Can J Ophthalmol 2007;42:145–6
doi:10.3129/can j ophthalmol.06-109
COX-2 and c-kit—Frota et al 145
Fig. 1—Positive staining for COX-2 in fine-needle aspiration sample of liver metastasis from uveal melanoma (original magnification ×100).
colorectal cancer,6 cutaneous melanoma,7 and recently, uveal melanoma.8 The presence of COX-2 in mixedcell-
type UM is correlated to worse prognostic factors.7 The U.S. Food and Drug Administration (FDA)
approved COX-2 inhibitors for the treatment of patients with familial adenomatous polyposis coli9 and
epidemiologic studies have shown that these drugs reduce the mortality from colorectal, breast, and lung
cancer.10 In fact, the use of COX-2 inhibitors warrants investigation as an adjuvant treatment for UM.
The c-kit protein CD11711,12 is a membrane-bound tyrosinase kinase receptor and its overexpression has been
observed in several malignancies.13–18 Imatinib mesylate (STI571, Gleevec, Novartis Pharma AG, Basel,
Switzerland) is a compound that inhibits kinase receptors19 and is FDA-approved for the treatment of c-kit–positive gastrointestinal stromal tumours (GIST) and Philadelphia chromosome-positive chronic myelogenous
leukemia.20More than 75% of UM cells were shown to be positive for c-kit, and imatinib mesylate decreased the proliferation and invasiveness of different cell lines of human UM.21 These results suggest that the drug may also
decrease the ability of cells to implant at the metastatic site.
We conclude that FNAB is not only a diagnostic tool but is also useful in tumour classification with regard to
COX-2 and c-kit expression. Patients with UM who present with positive staining for COX-2 and c-kit may
be candidates for tumour therapy with anti–c-kit and COX-2 inhibitors. Currently, the most important goals
are to increase the quality of life and the survival rates of these patients. These new therapeutic interventions
could lead to a decrease in cell invasiveness in patients free from metastasis, as well as delaying the on-going
process in those who already have metastasis, thus reducing the aggressiveness of the disease.
The authors have no financial conflict of interested regarding this manuscript.

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

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gabsound's picture
Replies 4
Last reply 3/2/2012 - 11:28pm


I just wanted to mention this trial as my melanoma Dr. brought it up at our last meeting.

I don't think I've seen this one on the bulletin board.


Julie in las Vegas

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Just finished Yervoy 02-17-2012 and finished radiation to right thigh 02-12-2012


Results of brain MRI are normal.

Results of PET CT are devastating. Impression: Extensive progression of malignant disease. Development of multiple hepatic, osseous and pulmonary metastatic lesions. MELASUCKANOMA!!! Pain in hip and back probably mets-but has gotten better.


Had office visit with Dr. Samlowski. He says keep in mind we have been treating metastatic melanoma all along. He says results of first scan post Yervoy are difficult to interpret. He has seen with many patients that the first scan shows "pseudoprogression of disease" and patients have gone on to have lesions disappear. In a way I'm wondering if my body has finally gotten the message that it needs to get to work and has really started to attack this melanoma in my body. Has this been sitting here for a while? Last PET/CT and brain MRI were Nov 1, 2011 and just showed malignant lesion in the leg with no other disease. The thing is for the most part I feel fine. Bone pain is gone. My liver is quite enlarged, which I can feel and that makes it hard to eat a big meal, but other than that I feel fine!. Dr Sam said this is a good sign that scan doesn't match how I feel. We will see.


Labs also drawn the same day. Plan will be to have labs again in 2 weeks and in 4 weeks. See him in 4 weeks at which time PET/CT will be repeated if labs are showing further abnormality and rescan in 6 weeks (from last scan) if labs are stable or improving. He mentioned at least 4 options for further treatment should the Yervoy not be working-Anti PD 1, chemo with Avastin, Abraxane and Carboplatin (not sure if I have all those drugs right-he will save this for last but has pt's that have done well on this), and a couple of clinical trials- I should have written this stuff down. He's not done treating me and I definitely am not done fighting! 


Anybody else that's had bad news on 1st scan post Yervoy and gone on to show improvement?


Julie in Las Vegas




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Angela C's picture
Replies 7
Last reply 3/2/2012 - 1:21pm

Hi everyone.

I'm headed to Bethesda next week for the beginning steps of the IL-12 TIL trial. I'll have surgery on Thursday to remove a tumor behind my pancreas. I'll be in the hospital for about a week. They'll grow my cells from it and I'll return in mid to late April for Chemo and the reintroduction of my grown TIL cells.

Here's the trial info if anyone is interested:


Be kind, for everyone is fighting a great battle. -Plato

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audgator's picture
Replies 4
Last reply 3/2/2012 - 2:24pm

I haven't contributed much here but I just posted a profile for anyone who wants the history. After a couple clear post-interefron scans they found mets in my lungs & liver last August. I did the ipi for 4 infusions. Follow-up scans on Tuesday found more & the previous ones growing. Some are now over 1 cm. So the Moffitt folks have enrolled me in the anti-PD1 trial pending clearance after a brain MRI, bloodwork & an EKG. I keep telling my docs, "Keep me alive til you find a cure!"


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laurieformike's picture
Replies 2
Last reply 3/3/2012 - 7:51pm
Replies by: DonW, laurieformike

Update on my husband, he had Cyberknife in mid August, 2 treatments, early September had seazure. He has been on Zelboraf since late October, off and on to a reduced dose, now 2 twice a day. Had WBR for two weeks 10 treatments, in December finished the 23rd. Good Pet scan late January they were all srinking liver, lungs and nodes. Then MRI mid Feburary, not good more mets and the first one treated in August was bigger, making trouble with the right side of body, no arm movement & can't walk alone. The Radation sergon said he could help him by doing Cyberknife again on the one's causing problems. So he is now scheduled for next week, maybe two treatments again. The MRI showed he could also have new ones. I'm so freaked out that he is going to have more issues. Like the first time more swelling or something worse. He's been on anti-seaure since September. Feel so bad for him. I was so elated when the Pet Scan came back good, but I knew something was wrong cause he stopped eatting.

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HopeandFaith's picture
Replies 3
Last reply 3/2/2012 - 8:10pm
Replies by: DonW, Gene_S, washoegal


 My husband had a lump in his head since May 2011. The dermatologist checked the lump in November 2011 and thought that was just some kind of inflamation. My husband insisted for a biopsy. After 2 biopsy, he was diagnosed with Melanoma in January 2011. He had a surgery in February 2012 and we just got a result that the type of cancer is spindle Cell Melanoma. Doctor gives it approx. 50 - 50 chance this has spread already.  

My husband is going to have another excission to widen in situ margin and also to widen clear margin from invasive area to create extra buffer zone -- probably in a month (about 2 months after initial surgery) to allow for healing / reduction of inflamation before going back in. That is all the conventional treatment his doctor is intending at this point.   I'm wondering if there is other treatmenta my husband needs to consider.

We live in Seattle, does anyone know if there is any Desmoplastic specialists in the area? I read somewhere, that spindle cell melanoma should be treated like soft tissue sarcoma. Is this correct? If there is anyone out there that has a similar experience, please share.. thank you



Below is some info about the cancer and the stuff that he has been taking.


Type:  Spindel Cell melanoma
Location:  Vertex of scalp (top of head) Depth:  4.3 mm
NOT ulcerated
Lymph nodes clear (sentinnel lymph node biopsy)
Mitotic rate:  8
blood vessel involvement indicated
classed currently as 2b
First surgery: 

  • clear margin on invasive part, narrow margin on one part of in-situ area
    Immune support steps:

    • Vitamin C (4-5 grams daily),
    • Vitamin D (4,00 iu daily -- His D levels were exceptionally low (7)
    • fish oil (4 grams daily), T
    • turkey tail mushroom extract (20 - 25 drops 3X daily),
    • Lots of fruit and vegetables, tumeric and brocolli daily, fresh and/or roasted garlic most days. 
    • IV vitamin C push

    Possible steps under consideration:

    • Some type of scan -- PET, diagnostic CT, etc.   Need to figure out if there is any value in doing a scan at this point. Conventionally, they are saying not a lot they can do if it spreads, so no point in scanning before symptoms would appear -- IDing early spread is not particularly beneficial to outcome...  (need input on if this is accurate or not).

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    Linny's picture
    Replies 4
    Last reply 3/1/2012 - 8:18pm

    Had a great visit at Johns Hopkins this past Tuesday. My scans were clean and I'm still hanging out with NED. Next scan will be some time in August/September.

    But I have to admit that I was getting freaked out by some minor lower back pain on my right side. I knew there were other things it could be besides melanoma, but even knowing that didn't do much to alleviate the "scanxiety". When Dr. Scharfmann broke the news about the clean scans I all but started dancing with him in the exam room.

    I'm not sure what my official NED date is, though. Melanoma was discovered in a lymph node back in November 2010 (I had an unknown primary). The subsequent scan in December 2010 done at a local hospital was clean. When I had my full lymphadenectomy done at Hopkins in January 2011, no further evidence of disease was found in the lymph nodes. At any rate, I've had no evidence of disease for over a year. Maybe I can just have two celebration days? ;-)

    If you're newly diagnosed, freaked out, and lurking right now, please know that things do get better with time.

    I had no idea how significant clean scans were until I found this site. The dermatologist who examined me at Hopkins completely downplayed them so when I left his office I was a complete wreck. He may be a good diagnostician and instructor but his bedside manner sucked, plain and simple. Fortunately I don't have to deal with him on a frequent basis. If you're seeing a bunch of doctors, there's always one who falls into the "jerk" category. Don't let them get you down. If I didn't have this site as a resource, my emotional recovery would have taken months instead of weeks.


    Stage III, unknown primary

    Stage III, Unknown Primary; 1 positive node in left axilla

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