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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carolyn.k's picture
Replies 6
Last reply 3/4/2012 - 10:34pm

My husband was diagnosed with stage 4 in April 2011, with mets in both lungs, liver, spleen and femur.  His original primary was on his back, and excised 11 years prior.  He was NED for 11 years; then an unrelated screening showed stage 4 disease.  He presented with just a little nausea and fatigue.  Since there are no melanoma specialists in Sacramento, we traveled to San Francisco and interviewed doctors at UCSF, NCMC and CPMC, and ended up enrolling in a clinical trial at UCSF with Dr. Daud.  Since Thomas is BRAF/NRAS/CKIT  negative, and was 72 at the time of diagnosis, our options were somewhat limited to either Yervoy or the clinical trial.  We chose the clinical trial, which is axitinib + carboplatin + paclitaxel.  He endured 8 rounds of chemo, and has since been on a continuous, maintenance dose of axitinib since November 22, 2011.  His last 5 PET/CT scans show "stable disease" although we do not consider this a victory, as his quality of life is horrible.  On a nausea scale of 1 - 10, with 1 being very mild and 10 meaning vomiting, his nausea usually hovers around a 2 - 3, but has escalated recently, even though he is considered stable.  For the past few weeks, his nausea maintains at about a "5", and he gets little relief from all the usual anti-emetics.  To date, he has tried:  zofram, Emend, compazine, phenergan, reglan, ativan, benadryl, scopolamine patch, Sancuso patch, medical marijuana, acupuncture, fresh ginger tea, candied ginger, licorice root tea, acupressure wrist bands.  Some of these worked to alleviate the post-chemo nausea, but the only thing that gives him any relief at the moment is a combination of ativan+reglan+benadryl.  However, he keeps building up a tolerance to the drugs and we increase the dose (per Doctor's orders) which gives him a little relief.  Dr. Daud believes that most of the nausea is due to his liver disesase:  approximately 50% of his liver is involved and it is not detoxifying his food properly, resulting in the nausea.  I feed him almost exclusively a very healthy, 95% organic diet, to keep pesticides and additives out of his system.  Direct liver intervention, via chemo embolization, or other treatments isn't an option because of the size of his liver mets; it would require a lot of chemo which could damage the remaining healthy liver tissue.  We are considering switching to a PD1 trial, but as it hasn't opened up yet at UCSF, we are waiting.  Does anyone have any other remedies for persistent nausea that we haven't tried?  Any and all ideas, both conventional and alternative, would be welcomed.

Never give up.

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My dad has stage 4 melanoma. Initial diagnosis was found when finding two tumors in his brain - 2 craniotomies, WBR and gamma knife have been his treatment methods so far. They cannot find his original source and as of now do not see any other signs of melanoma in his brain or the rest of his body. Next set of whole body scans scheduled for end of March.

His Dr. gave him the option of taking Temodar as a "preventative" measure. He could either do a strong dose x number of days straight and then take a break or take a lighter dose daily for 30 days. Radiation was really rough on him and he's just now starting to feel better again (although still has trouble with eating due to the taste of food) Although we'd rather he not sit back and just wait for the cancer to show up again, he's hesitant about taking the Temador because he's worried about the side effects and how they will make him feel. For those of you taking/who have taken Temodar, what have your side effects consisted of and how bad? Also, what type of a dosing schedule were you on? Daily for a month straight or larger dose x number of days straight then break?

 Thank you for any feedback - I'd really like him to "try" the Temodar but he's really worried about the potential side effects.

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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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boot2aboot's picture
Replies 12
Last reply 3/4/2012 - 12:22am


For all of us Braf + people we might soon one day be able to treat our mel like a chronic condition:



Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Provided by H. Lee Moffitt Cancer Center & Research Institute

don't back up, don't back down

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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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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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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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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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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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    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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    Kelly7's picture
    Replies 7
    Last reply 3/2/2012 - 2:36pm



    My brother is currently in the hospital undergoing IL2(week 2 of 1st phase). I was just wondering if anyone knows anything he could try to relieve some of his insane itching besides Sarno lotion, and there is a only a shower, so no oatmeal baths. I will be at the hospital all day and night with him, unfortunately I wont be able to check my email, but you can text me any ideas, and I can run out to the store! My number is 954-851-3793

    Thank you, thank you!

    I really appreciate it!!

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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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    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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