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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Lisa13's picture
Replies 1
Last reply 12/3/2011 - 8:31am
Replies by: momof2kids

Jackie,

I wanted to let you know how happy I am to hear your good news!!  I know this feeling very well and I hope you and I can continue good scans for a long time.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Replies 1
Last reply 12/2/2011 - 11:49pm
Replies by: Charlie S

http://www.medscape.com/viewarticle/754542

December 1, 2011 — Vemurafenib (Zelboraf, Plexxikon/Roche) should not be used outside of its labeled indication for certain melanoma patients, a group of oncologists writes in an editorial published online November 7 in the Journal of Clinical Oncology.

They say that this new drug and other RAF inhibitors could theoretically cause second cancers over time.

Vemurafenib was approved by the US Food and Drug Administration this year for the treatment of metastatic melanoma in patients with BRAF mutations, and has wowed the oncology community with its efficacy.

Consequently, clinicians could be tempted to try the drug in earlier-stage BRAF-mutant melanoma patients, especially those with high-risk surgically resected disease, suggest the editorialists, led by Mario Lacouture, MD, from the Memorial Sloan-Kettering Cancer Center in New York City.

But second cancers are a potential concern in earlier-stage melanoma patients, who will likely live longer than the typical patient with metastatic disease (9 to 12 months), they warn.

Interestingly, the second cancers of concern are not keratoacanthomas (KAs) or cutaneous squamous cell carcinomas (cSCCs), which have been cited as adverse events in clinical studies of vemurafenib. The editorialists are not especially worried about these 2 skin cancers, which develop in up to one third of all vemurafenib-treated patients. They explain: "The KAs and cSCCs that arise in the setting of vemurafenib treatment are of low metastatic potential, often regress spontaneously, and are easily cured by surgical resection and/or destructive methods (cryotherapy or electrodessication/curettage)."

Instead, there is a theoretical concern about tumors at other body sites.

"It remains unknown whether vemurafenib or other RAF inhibitors will promote the growth of dormant RAS mutant tumors of the lung, pancreas, or other sites," write Dr. Lacouture and his colleagues.

They explain that there is evidence to suggest that vemurafenib promotes the "hyperproliferation of preexistent dormant RAS mutant cancer cells."

How Lung, Pancreas, and Other Cancers Can Occur

To understand how selective RAF inhibitors such as vemurafenib can cause other tumors, one needs to look at an accompnaying genomic analysis of 237 cSCCs and KAs, 19 of which were from patients treated with RAF inhibitors (either vemurafenib or sorafenib), the editorialists explain.

The cSCCs and KAs from patients treated with RAF inhibitors have a mutational profile that is distinct from those that arose sporadically or as a result of treatment with immunosuppressive agents, say the editorialists. Specifically, 21.1% of KAs and cSCCs resected from patients treated with RAF inhibitors were found to have activating HRAS mutations, whereas RAS mutations were rare (3.2%) in tumors that developed in the other patients.

These study results, along with "the rapid appearance of cSCC and KA after initiation of vemurafenib," suggest that the "induction of RAF signaling" by vemurafenib promotes the growth of dormant RAS mutant cancer cells, the editorialists write.

There might be good news for melanoma researchers in this genomic analysis, say Dr. Lacouture and his colleagues. These results might "guide the development of combination strategies" in melanoma, which could result in the synergistic antitumor activity and attenuated toxicities that occur with either drug alone.

In support of this concept, they refer to a recent phase 2 study of the combination of the MEK inhibitor GSK1120212 and RAF inhibitor GSK2118436 in metastatic melanoma. The study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and covered at that time by Medscape Medical News, showed that the toxicity of the combination seemed to be lower than that of either agent used alone.

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Lisa13's picture
Replies 1
Last reply 12/2/2011 - 7:53pm
Replies by: FormerCaregiver

After getting good news on my CT scan from ipi, my blood work showed something completely different.  4 weeks ago, my blood work was great - high lymphocytes and normal blood work in general. After my CT scan, it was all different - low lymphocyte, high WBR, low everything else.  My oncologist is looking into this and wondering if the prednisone I took 13 hours before CT and 1 hour before had anything to do with it. He's also questionning if the gamma knife treatment I had 2 weeks ago is causing some changes in my bloodwork due to inflammation, etc. I feel good, but now worried about these blood tests. How can I sit here and feel good about my CT when my blood work is telling a different story??  All I can think of is my brain now, but they didn't want to scan me again (last scan was 2.5 weeks ago) unless I had symptoms.  Funny thing is, I never had any symptoms when they found the 2 in my head.

I'm too much like a Dr. sometimes when it comes to bloodwork, treatment, etc. I know so much about this disease, that I sometimes surprise my oncologist with some of the medical questions I ask. When you're fighting for the longest life possible, you do everything you can, not to mention your due dilligence!

I truly think my blood work will return to normal in a couple of weeks. Since the day I had my blood work done, it was right after 2 prednisone, benadryl,  CT scan iodine and major stress - not to mention the gamma knife radiation I just had 2.5 weeks ago. Yesterday, my Dr. said "Have a Merry Christmas, your scans look good" and now I"m letting myself get stressed again. 

Just so know, 4 weeks ago, my lymphocytes were 1830 (1.83) and now they're 0.58!!!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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AngelaM's picture
Replies 6
Last reply 12/2/2011 - 5:06pm
Replies by: lhaley, AngelaM, Janner, Gene_S

I have just recently been diagnosed with my 3rd primary melanoma in 2 years. The first diagnosis was in Oct 2009 as melanoma in-situ (chest), the second in Jan 2011 as 0.24mm Clark II (upper back) and the 3rd in October 2011 as 0.45mm Clark III mitotic rate 1 (lower back). I live in South Africa, where melanoma is almost unheard of amongst the lay person. Although my doctors are very helpful and caring and they answer all of my questions, I just can't help feeling desperate. I don't understand why I have had so many primary melanomas in the space of only 2 years, and why each one is worse than the previous one. My dermatologist checks me out every 3 months and I have mole scans etc, but still the 3rd one came up out of normal skin (not even a pre existing mole) and wasn't there at the end of June 2011, when I had my last full body photographs taken! I can't believe that it could have grown so fast! It appeared out of nothing in less than 4 months!

No one in my family has ever been diagnosed with a melanoma, but my doctors still say that I must have a hereditary predisposition.

Is it common for people to keep on an on getting new primaries? Is it likely that my last one could have spread (being Clark III)?

I have a 1 year old son and I need to be around long enough to see him grow up, but with a new melanoma popping up out of the blue at every turn I feel less and less positive about my chances.

I also feel like I've become obsessed about this. I think about it all the time. I battle to concentrate at work, and I can't sleep at night because I'm always imagining that I have another invasive melanoma lurking. I check my skin all the time, but that makes it worse because I could swear I see new dots. I'm also paranoid about any pain and I constantly look for lumps under my arms and in my groin. I'm driving myself crazy!

Thanks for any advice

Angela 

Don't sweat the small stuff. Differentiate between what's important in life and what's not.

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jmmm's picture
Replies 4
Last reply 12/2/2011 - 4:56pm
Replies by: lhaley, HelperDaughter

My husband had a craniotomy yesterday. All went well. The surgeon had to leave a little bit of the tumor, so as to not cause any motor damage. Before he was even out of surgery, the neurosurgeon was telling me that he would need WBR. The oncologist is recommending gamma knife. We're so confused. What are pros and cons to each? How soon after a craniotomy can they safely do radiation. He's just begun recovery from the craniotomy and we're already overwhelmed with the next step. Any advice would be appreciated.

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/2/2011 - 3:20am

Could anyone on this forum tell me is Mek trial is effective after zelboraf?

I have read that braf/mek combos are effective treatments.

Can people still participate in Braf/Mek trials after taking zelboraf?

don't back up, don't back down

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mom3girlsFL's picture
Replies 14
Last reply 12/1/2011 - 8:34pm

Good Morning,

Had 3mth onc appt yesterday.  Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear).  Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011.  Long story short - positive node removed last year.  PET showed more. More nodes removed, several w/mel.  Went on interferon after additional node removal.  PET after showed new node.  Had "radical" node removal, several nodes again w/mel.  Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.

Come home and discuss w/hubby.  All is well...until this morning.  Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET?  Let's see if we can get one ourselves...Don't you understand what the PET does? I know you had CT, but what about your brain?..." and on, and on, and on...

Please, please don't be mad at hubby.  After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes).  I told him to call the onc.  Don't know what else to say.  We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.

I hope I am not being ignorant and just assuming if the onc is okay, then I am okay.  On a side bar - this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET - at the persistence of my hubby we went to the 2nd onc for our treatment plan.  Basically, my hubby "saved my life" so I do value his opinion.

Thanks for your input.  Hope I didn't get too confusing for you.

Laurie

Do not fear tomorrow, God is already there.

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Lisa13's picture
Replies 10
Last reply 12/1/2011 - 8:13pm

My 12 week scan was good news and now the 16th week scan after ipi is still good. Had my scan today and was told I have no new mets anywhere.  The mets in my lungs are still shrinking (slowly) and the rest are remaining stable.  My Dr. was very happy and said he'd see me in 2 months.  I also asked about getting a brain MRI since I had 2 brain mets gamma knifed, but he said he's not concerned, unless I have symptoms.  If the ipi is working on my current  cancer in the lungs, then maybe it will keep the brain mets from coming for awhile.

2 other things I learned today that is also great news.  My hospital in Toronto, Canada starts Anti-PD1 trials and is open to people who've done ipi.  He said if I progressed, I could either do ipi or Anit PD-1.  He also told me that he's had a great few weeks seeing some patients with bad scans at Week 12 and now good responses at week 16 and 20. 

I know there's no cure for this cancer, but at least I can feel happy about things now.  It's also great to hear some Dr's had patients on this drug who are still kickin' it 4 years and some 8 years later!!

One other thing I wanted to mention.  For those of you who may respond to ipi, don't ever think that you now have a couple of months extra to live (which is what these stupid stats talk about). Believe that you could be someone lucky enough to last much longer. A positive mind is half the battle and you can't give up.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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alicia's picture
Replies 6
Last reply 12/1/2011 - 7:51pm
Replies by: alicia, Anonymous, FormerCaregiver, Lisa13, deardad

Hello friends,

A very close friend of mine was diagnosed 2 yrs ago with stage 3a melanoma.  just 6 months ago it spread to his right lung with a single metastasis.  He had the rt upper lobe removed and did no treatment after.  He just had CT chest abd/pelvis 7 weeks ago with NED.  Just a week ago he began having back pain and dark colored urine.  Did MRI of abdomen and found out today he has widespread metastatic disease to the liver and spleen.  What treatment options are there for this type of disease and are any of you having good results with your treatments for liver/spleen mets.  thanks so much!!!!  you all have been such a great support to me through my battle as well.  much love to you all!!!!

 

Alicia stage 3 w/ mult primary tumors and lymph node involvement ( 1 yr of interferon currently NED)

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Tracey's picture
Replies 3
Last reply 12/1/2011 - 9:43am
Replies by: Tracey, FormerCaregiver

Hi all!
Looking for a bit of guidance to offer the doctors caring for my husband, Steve.

Steve was diagnosed in June with Leptomeningial Melanoma, that had also metastised in a lymph node and also has a little something posterior spine at about T4. Biopsy of his lymph node tested positive for the BRAF gene mutation and he began treatment with Vemurafenib and has responded really well. Last LP showed scant cells in fluid, lymph node had shrunk over 70%, as had spot on spine. (there is something questionable regarding his spleen, but oncologist is not too worried about it). He had experienced side effects which cleared when his dose was reduced to 720 mg twice a day.

Here's the mystery. He is suffering from nausea and vomit, migraines and sixth nerve palsy over the last week. He had become quite dehydated over the weekend and a bit out of sorts. There is inflammation creating pressure and indicating poor drainage of spinal fluid. Why might that be?

We are living in Kelowna, BC and receiving treatment out of Vancouver. Steve is in hospital where we live and doctors here seem to be at a lose, and they are working really hard and feel he is well enough to continue his treatment. Our team in Vancouver is not offering any guidance except steriods. No one here or in Vancouver has much experience with leptomeningial melanoma except for Steve's case. We certainly don't want him off the drug as we are afraid this is the only option. I think we need any suggestions as to what else to look for quickly. I certainly would be so very grateful for input.

With all my heart, thank you!
Tracey

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piii's picture
Replies 8
Last reply 12/1/2011 - 7:06am

Just an update, I finished my radiation treatments and they went very well. The Interferon has been a tougher go. The chills are the worst but I will make it through. I did have another mole taken off and came back a-typical they are sending the slides to Brighan and Womens for futher study but to be honest I am not too worried about it. I will worry when they tell me it is something to worry about.

 

Peter

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fenny's picture
Replies 10
Last reply 12/1/2011 - 12:48am

Anyone can tell me which cancer center in the States is the best for musocal vaginal melanoma?  Is Moffitt Cancer Center in Tampa, Florida is good choice? I tried to contact Dr. Hodi at Dana Farber Cancer Institute in Boston, but no response.  My sister had a major operation in Beijing Cancer Center on Nov 16. She had her uterus, vagina and part of her vulva removed and she's now recovering from the surgery while waiting for the new chemo thrapy. I really wanna take my sister to the best melanoma hospital in the USA and we cannot affort to waste money, so pls offer your valuable info about the best one in the States. Thx.  

Make Each Second Count!

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scots's picture
Replies 11
Last reply 12/1/2011 - 12:39am

just completed 11 months of ld interferon. it was not easy but I glad to be done.

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DonnaK's picture
Replies 3
Last reply 11/30/2011 - 10:27pm

Hi.  I have no bad news to report, but I'm just curious if people could share their stories of how they knew their Melanoma had recurred?  What are the warning signs we should be looking for, in addiiton to regular scans and derm checks?  What kinds of headache, cough, shortness of breath are signs of concern, vs. trivial issues?

Thanks in advance for the information! I understand the importance of early detection and want to be as vigilant as possible!

DonnaK

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Kim41's picture
Replies 2
Last reply 11/30/2011 - 11:43am
Replies by: Kim41

Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists. I did see that they have a melanoma center at Penn state Hershey Mecical center. Just wandering if thats a good place to go. Any info would be greatly appreciated.

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