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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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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    himynameiskevin's picture
    Replies 13
    Last reply 8/2/2012 - 7:22pm

    Well the good news is, I saw my radiation oncologist and she informed me that there is nothing new showing in my brain besides the ones that were treated and the three that are going to be, I had another mask fitted while I was in and will be having one (hopefully last) session of SRS on Monday morning to finish these things off. She told me that there is still swelling around some of the lesions, and that this is natural for the first few weeks after radiation, so unfortunately it's recommended that I stay on the steroid and anti-seizure meds for the time being, but taper off as soon as possible down the line.

    I also saw my regular oncologist and he has officially put in the order for me to start Zelboraf, unfortunately with the time it takes to process the order, get authorization and handle other medical variables I don't understand but know are necessary, I won't be able to start it until 3/20. Three  weeks. :/ Oh this waiting is always the hardest part... But a plan is in order and maybe as the SRS does its thing, some preemptive thoughts of a possible hopeful outcome in the future will trigger genuine optimism and make this time pass quickly. A day at a time. That's my goal.. a day, a week, a month at a time... and then maybe one day I'll be 90 with quite a story to tell.

    Thank you all for the ongoing encouragement and support.

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    yoopergirl's picture
    Replies 8
    Last reply 3/4/2012 - 10:46am

    After my 3rd infusion I developed diarrhea. chills and a high fever, went to the ER last Thursday and was admitted. Pumped with antibiatics and fluids to get this fever under control it was 103.6 so that is high for an adult. They were in contact with my oncologist while I was there since he was 50 miles from the hospital that I was in. I also developed a prblems with my eyes and am being treated for that with predisone drops along with 2 others. I am now on predison orally also, I really didn't want that but he insisted and I am felling better, already am being tapered down from 40mg 3 times daily to 20 mg 3 times daily and then on Friday will br 10 mg 3 times daily. I was suppose to travel today to see him but we had a bad winter storm so rescheduled for Monday. My last infusion is suppose to be March 12th so on Monday will find out if that is possible. Just letting you know where I have been. Yoopergirl.

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    Anonymous's picture
    Replies 2
    Last reply 3/1/2012 - 3:08pm
    Replies by: vivian, washoegal

    For about two months, off and on, I had what seemed to be a hemoroid or small tear that would bleed when I wiped. It seems to have resolved, but my dermo felt I should have a GI consult. I was advised to take any bleeding seriously . I was told melanoma likes to go to the small intestines ( I am stage IV / NED) so, I should have an endoscopy as well as a colonoscopy. I have no other symptoms. Has anyone else gone ahead with these procedures because of a bit of bleeding that comes and goes? I am going to go ahead and have them done on Friday.


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    Eileen L's picture
    Replies 17
    Last reply 3/3/2012 - 10:21am

    Hello to everyone. I haven't been on the board lately, but wanted to let folks know what was happening. I had my six month scans a few weeks ago and unfortunately an adrenal gland tumor that had been there for three years and fairly inactive decided to almost double in size to 5.4cm. So I am off for a FNB this afternoon and depending on results will probably be looking at some change in treatment. Right now I am leaning towards getting the sucker out since it seems to be the only active tumor in my body, but have been in conversations with Dr. Daud at UCSF about perhaps trying a trial of BRAF and MEK. Could be a benign tumor, but since the beast likes the adrenal gland I am thinking more probably mel than not.

    For those of you who don't know me, I was diagnosed Stage IV in September, 2007 and my initial treatment was chemotherapy coupled with Nexavar. I was one of the lucky few that responded to this regime.  I have continued to take the Nexavar. I have two tumors in my lungs which shrung and then haven't  grown in about three years so unsure if they are even active. The pesky adrenal tumor showed up in February, 2009 and has been slowly growing until it had its recent little growth spurt.

    There is hope, life and joy after a stage IV diagnosis! I am feeling very positive and belief that I will be around for quite awhile. Love and prayers always are gratefully accepted.

    Thanks to everyone on this board who have been so supportive and kind. This is an amazing place.

    Love and gratitude,

    Eileen L



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    Replies by: Gene_S, Anonymous, washoegal, Janner


    For much more info, copy and paste the following into your search for details.

    " Briana Cox's daughter was diagnosed with the same stage-four melanoma "

    A very sad story

    Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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    vivian's picture
    Replies 3
    Last reply 2/29/2012 - 5:33pm
    Replies by: lhaley, TSchulz, Erinmay22

    After being NED for 16 months, (stage IIIa, nodular, 4.35 mm, mitotic rate 9 on mid back), I found a lump under the skin a little more than an inch below the CLND incision.  The surgeon did an excisional biopsy a week ago.  He called this morning to say that the preliminary report was melanoma.  That's all I know, but of course, my mind is racing.  My last scans were in November and they were clear, so I am hoping (praying) that this is just a single little subcutaneous met.  If so, will they probably just do a wide excision as they did with the primary?  Does this move me to stage IV?  

    I know I don't have enough information yet to even guess at what is to come, but my appointment with the oncologist isn't for a week.  Between now and then, I would like to do as much research, planning, etc. as possible so that I can ask informed questions about treatment possibilities.  I do know what to expect if it is stage IV.

    Thanks for any information/experiences you can share.  I hope all of you are feeling well this morning!


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    HelperDaughter's picture
    Replies 17
    Last reply 3/5/2012 - 7:43am

    My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

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    HelperDaughter's picture
    Replies 1
    Last reply 2/29/2012 - 12:35pm
    Replies by: boot2aboot

    My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

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