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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marfda's picture
Replies 2
Last reply 12/8/2011 - 8:43am
Replies by: Phil S, lhaley

I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

I went around the system today and asked the rad onc to give me results while at my radiation appointment today (the results are online for doctors affiliated with the hospital.) So, I got around the system today, but I know if I had not had my results and the nurse had called to tell me nothing, I would be having a crazy anxiety attack.  It also feels like we as patients are treated as infants in this system. Like we can only handle having a doctor to deliver the news to us.

PS I do understand that the results can be hard to read and interpert and people might freak out. But, in my case, I am informed and want to advocate for myself! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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Karolina's picture
Replies 10
Last reply 12/9/2011 - 7:59pm
Replies by: Janner, Karolina, lhaley

Sorry for asking, again, silly question, but due to the lack of clarity from the doctor, i am trying to find out as much information as possible from this forum. And as so far, I wasn’t disappointed. Thank you

Now I am trying to find out whether negative result of SNB means that this cancer COULD NOT spread elsewhere? Or, is it possible that SNB is negative but cells could spread somewhere in the body via different way? Bear in mind that I am still talking about Desmoplastic melanoma, which I understand may behave different to other melanomas…

I am a bit concerned as my friend had 3 operations already, at the moment she has an opened wound as the doctor wants to make sure that there are no more cancer cells after last (3rd operation).  However, I wonder whether this cancer could spread elsewhere if, in fact, it is on my friend’s skin for at least last 5 months! If SNB is negative, does it mean that the cancer CAN NOT spread elsewhere by other means? To date my friend had no other treatment done i.e. CT or blood test. Is it also a standard procedure and is not required?

Please advise

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lhaley's picture
Replies 15
Last reply 12/7/2011 - 6:15pm

I am so thankful.  Original brain tumor (21mm) was found Oct 4th that was showing symptoms.  SRS done Oct 17th and was told that there was approx 1cm bleeding at the time.   EMR Oct 30th due to severe headaches but told stable.

Today's MRI was good!  There has been shrinkage of 20% and it shows nucrosis spaced through out the tumor.  Has not bleed again since the first time and is slowly being absorbed.  Both the radiologist and melanoma specialist both were so excited and had only smiling.  They feel that all of the issues I've been having are steroid symptoms.  Now we are finishing weaning.  They have slowly been weaning me off and should take about another week or so. 

Every joint has caused problems but they have told me if I do have some headaches that I'm not to worry.  Sometimes it does happen. If they're bad then I call back.  Meanwhile next PET scan is the first week of Jan.  

Linda

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renter9's picture
Replies 3
Last reply 12/9/2011 - 3:17am

Person in that area had a shave biopsy with a melanoma diagnosis.  Derm wants him to return in 2 days to have the entire mole removed. Do not know the name of the MD, but would like some suggestions for a reputable clinic or specific MD.

Thanks, 6 year survivor

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KellieSue's picture
Replies 7
Last reply 12/9/2011 - 9:22pm

Hello all. Thank you very much for the advice earlier on my braun tumor. I am about 20 days out and feeling much better. I finished the brain radiation and weaning off of steroids. PET and MRI look good so for now we will continue on.
I am getting better everyday wirh my stroke. It's a conscious decision to pay attention to the right side even tho I can't feel it. I have great OT and PT making me stronger everyday.
I will be starting a clinical trial with Temodar starting next Monday. Now if we can just keep the brain clean we will be good. I'm feeling positive and hoping to get back to kicking cancers ass.
Thank you all for the thoughts.

Kellie(from Iowa) fighting my way back from a stroke. I will beat this. I will. Cancer can kiss my ass

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Laurie from maine's picture
Replies 9
Last reply 12/7/2011 - 11:01am

Just came from doctor with scan results from 4 months on zelboraf.  Liver tumor continues to decrease, lungs have stayed same.  But intestines now have two big tumors wrapping around them growing quickly. :(   I go tonite for MRI and thurs for PET scan.  Plan as of now is surgery asap to remove two intestinal tumors, meanwhile staying on zelboraf until surgery (dr is checking on whether to stay on or not) and then figure out what plan I go with from there.  I am going to be hopeful/optimistic as I sailed thru the last intestinal surgery and was out of hospital in 4 days and walking around fine.  Doctor said sometimes each area of the body reacts differently to the drugs, and he is hoping that the stomach/intestine is only area that didnt react to Zelboraf. But guessing he is also thinking if I am strong enough after surgery we go to ippi or interleukin?    I am guessing plans might change depending on mri and pet results

wish me luck - keeping strong thoughts and staying strong not going to let this knock me down.

laurie from maine. 

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Lisa13's picture
Replies 5
Last reply 12/12/2011 - 10:36pm

I just had gamma knife for 2 brain mets almost 1 month ago. I've had no symptoms so far, but my eye feels weird which happens to be on the same side as the larger tumour. Maybe this is the effects of radiation or maybe it's part of a sinus infection I'm being treated for (on the same side). My eye started out with slightly swollen eyelid and tearing - that went away, but now the eye feels weird. No double or blurry vision, just weird, like something isn't right - the vision is weird at times. The Dr. said if I get much worse (antibiodics arn't working), then I'll probably have to go on steroids as it may be imflammation from radiation. Has anyone had this??

My Dr. doesn't seem concerned about another tumour in there, but I guess if things got worse, we'd be more inclined to check.  My oncologist was a bit surprised that the radiologist never gave me any steroids after the treatment - especially since it was 2.5cm.  I think because of it's location, he didn't think I'd run into a problem (not near anything).

Also read 2 articles about brain mets and ipi/zelboraf. Apparently when you get brain mets, the brain/blood barrier becomes less intact making it easier for these drugs to go inside.   This actually seems like good news to me.

Lias

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/5/2011 - 7:19pm
Replies by: Richard_K, Tim--MRF

So should men be careful not to get someone pregnant while on Zelboraf?

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Anonymous's picture
Anonymous
Replies 8
Last reply 12/7/2011 - 4:13pm
Replies by: Katg416, Anonymous, Charlie S

I saw this on MIF's Forum: 

Cancer 101, supported by Genentech, and  in collaboration with MIF and others has created a Melanoma Planner with lots of melanoma information and an organizer to keep your bills, tests and studies in hard copy files.  To get yours:  call 646-638-2202, email: info@cancer101.org ,  to see it, www.cancer101.org.

 

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jmmm's picture
Replies 1
Last reply 12/3/2011 - 7:09pm
Replies by: momof2kids

I posted a couple of weeks ago about being scared of my hubby's craniotomy. Thanks for all the kind words. He sailed through the surgery and came home 48 hours after arriving in the recovery room. Simply amazing. He was walking the halls the next day. So far, no side effects and he's only taken 3 pain pills since leaving the recovery room. There really hasn't been pain at all for him.

So, now he's gearing up for gamma knife on the 22nd. His tumor was 5.5 x6.5 cm. And the doctor couldn't get it all safely with the craniotomy. Any advice on gamma knife would be appreciated.

Also, the pathology came back and shows that the cells were malignant and were shown to have been treated and in the process of dying. This proves, at least in him, that Zelboraf DOES pass the blood brain barrier.

The oncologist has mentioned Temador. He was going to consult with some other specialists, but is anyone using Temador and Zelboraf to help prevent additional brain tumors?

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Bubbles's picture
Replies 6
Last reply 2/12/2012 - 8:28pm
Replies by: Anonymous, Bubbles, boot2aboot, Cooper, momof2kids

FYI - from my blog.....

This month marks a full year of my being under anti-PD1 treatment (MDX-1106 by Bristol Meyers Squibb) combined with vaccines at Moffitt in Tampa. However, anti-PD1 is now in development by 5 companies (BMS - MDX-1106, CureTech - CT-011, Merck/Scherring Plough - MK-3475/SCH 900475, Amplimmune/Glaxo Smith Kline - AMP-224, Genentec - no drug name yet).  However, the Genentec drug is technically an anti-PD1 ligand.  Trials for all of these include my BMS combo with vaccines at Moffitt as well as a new CureTech trial opening at Moffitt.  CureTech is also opening trials at Yale, Dartmouth, and locations in New York, Boston, Europe, and Israel. Merck/Sherring Plough is opening sites in San Antonio, Houston, Los Angeles, San Francisco, and Toronto.  Amplimmune will have sites in Detroit, North Carolina, and Nashville. BMS also has trials in New York and at Yale. 

 

So far, BMS has been in the lead with trials already in process, but it looks like game on for the rest of them.  Hope, they know what they are doing and there is real promise here.  Usually pharma knows where to place it's bets....so we will see....as data remains hard to come by....more on that next..... 

Best wishes to all......Celeste

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momof2kids's picture
Replies 13
Last reply 12/7/2011 - 7:21am

 

 

Hello everyone. I haven't posted lately as I've been so scared, wondering if this Yervoy was going to work on me!

 

Diagnosed in June 2011, out of the blue, straight to Stage IV (Brain, Liver & Lung)

I got all 4 injections of the 3mg dose with not a single side effect from September 2011 thru Nov 2011 I thought for sure maybe my body wasn't responding!  I never understood the blood levels, that others said to look for rising numbers, I just gave up trying to figure it out and just figured my body will do whatever it wants.

GREAT NEWS!!  We saw the scans ourselves today! My lung & liver tumors have all shrunk down, can barely see the Lung tumor (was around 5cm), and the big Liver tumor went from 6cm down to 2cm...and this is the 1st scan since completing the 4 doses!
We can only hope that another scan in 3 months will show more shrinkage!
Brain scans came back CLEAN TOO! Quarter size tumor GONE (thanks to Gamma Knife in July, took almost 6 months to disappear), and the spot I had my tumor removed from on my brain in July, is back to normal looking!
All doctors happy FOR NOW, AND SO AM I!! 3 months of NO treatments or scans for now!
 
This treatment , the body "remembers" this type, and should continue to kill cancer cells it finds, and I can continue on this treatment again if needed, since my body accepted it!  There's no plans for future treatments of it until they see the need to continue on it, then I can continue to get it after that since my body accepted it once, it should accept it over & over.

I truly hope, like Lisa13 said in her post (that her doctors said) he's had patients who were on this for YEARS, and it was still working. I can only truly pray & hope that this will be the same way for many of us!

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Donna1963's picture
Replies 4
Last reply 12/9/2011 - 3:28am

Hello, my name is Donna.  The personal stories here are heartbreaking. My heart goes out to all of you. My mom has a large spot on her cheek. She went to a Dermatologist and she said that it was Melanoma and did a biopsy. It was so difficult to watch her in so much pain. The doctor said she had the bad kind of skin cancer and that they need to find out if it has spread to her lymph nodes or anywhere else in her body. I'm sure that a Dermatologist knows what it looks like but could she be wrong? My mom has had this spot for at least a year but it wasn't that big and has grown quite a bit. Her twin sister had skin cancer as well as her other two sisters. All three of them said it wasn't Melanoma. Can this type of cancer be hereditary?  

 

Thanks,

 

Donna

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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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HelperDaughter's picture
Replies 2
Last reply 12/3/2011 - 3:20pm

I've lost two posts now and I'm ready to scream!!  Ctrl+C, Ctrl+C....

Anyway, my question has to do with small intestinal mets and surgery. my mom had mets to brain (removed with SRS & a craniotomy), lungs, and a lymph node.  worst of all, she has a met or mets to her small intestine.  for months now, it's been bleeding and she needed biweekly transfusions of 2 units.  the surgeon said the mass was resectable, but that if "all" she was needing was 2 units every 2 weeks, to stick with that because the surgery would be a rough one.

now, she needs 2 units every week.  it seems like the met is progressing, which is totally depressing since my mom's been on ipi.  she was supposed to see the melanoma specialist yesterday to talk about her first post-ipi scan, but that had to be postponed to mid-december because on Tuesday my mom had a craniotomy for her second brain tumor (the first was 100% eliminated with SRS, and the surgeon said she got all of the second one but wants to do radiation anyway). i almost don't want to know what the PET scan says - i think none of us think it will be good news.  how can it possibly be when she developed a second brain met, has worsening blood loss and the lymph node is still there, all at 20 weeks??

anyway, i feel like this intestinal met is robbing my mom of her will to live and that all of the symptoms she's having are related to it. since she's anemic all the time she's constantly fatigued.  in the past month she's pretty much lost her appetite.  she has severe gas/burping and abdominal pain when eating certain foods.  prior to the craniotomy she did not have nausea and vomiting, but now she does.  she doesn't wretch, it just "comes up" like her body is rejecting all nutrition.  it's so scary.

maybe it's stupid but i feel like this intestinal surgery would be the magic bullet.  if she's not bleeding all the time and anemic, she won't be tired, and if her abdominal symptoms resolve she won't be so miserable.  apparently it would be a bad surgery, though.  it's can't be done laparascopically, so she would have to stay in the hospital for a week and then essentially be on a three-week liquid diet.  this craniotomy business made her miserable and i'm so scared she's not going to want to do the abdominal surgery. if she doesn't do the surgery, she won't feel better and get stronger and potentially want to try some other type of treatment (assuming the ipi is a wash).

anyway, this is a long post to just basically ask if anyone has small bowel mets and abdominal problems/internal bleeding, and/or if they've had small bowel surgery for mets, what it was like, etc, did the symptoms resolve, you know.  

 

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