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.

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bkinman's picture
Replies 2
Last reply 5/28/2013 - 9:59pm
Replies by: NYKaren, aldakota22

I have been on Z since Feb 2013 with only one "holiday" from the med.  liver met shrank from 4cm to 2.2 from Feb to Apri while on met. Have been having the joint pain associated with Z since the beginning. Yesterday afternoon started having some mild discomfort in my right shoulder blade exascerbated when I take a deep or semi deep breath.  Go worse as the night wore on.  Now sharp pain on deep breath.  Has anyone had the joint pain in your shoulder blade or do you think it could be something else?

I had some small nodules in lungs on scans in Feb and April.  no change in April. Too small to call mass. No PET yet to see if they show up hot. Also, have lytic lesions on spine. One causing fractured verterbrae.  Had radiation on it Sept 2012. Have not had any pain from fracture in couple months.

Do you think this is just from Z or could it be lung mets or bone mets? I figured I would give it a couple days and see if it got better like the joint pain from the Z does; if not, then I go see my Oncologist. Thought I would ask you guys in meantime.

 

Thanks in advance.

Becky in Alabama

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Replies by: POW

I'm now more nervous than before. I took your advice and I just picked up a copy of my pathology report here is what it says:

SURGICAL PATHOLOGY REPORT

MICROSCOPIC DIAGNOSIS:

Skin, left medial foot (excisional biopsy):
ULCERATED NODULAR AND INFILTRATING MELANOMA (BRESLOW DEPTH >5 MM), EXTENDING TO THE DEEP MARGIN. Immunostains (Melan A, cytokeratin 5/6, cytokeratin 7) are confirmatory. Positive and negative controls stain appropriately. Focal lymphatic invasion is noted. Dr. Sahmel has seen the slide and concurs.
Only a small amount of possible in situ melanoma is seen. While this can be explained by ulceration, clinical correlation is recommended to exclude metastatic melanoma.

SYNOPTIC

Procedure: EXCISION
Specimen Laterality: LEFT
Tumor Site: MEDIAL FOOT
Tumor Size: 1.5 CM IN WIDTH
Macroscopic Satellite Nodule(s): NOT SEEN
Histologic Type: UNCERTAIN BECAUSE OF MINIMAL NATURE OF IN SITU COMPONENT.
Maximum Tumor Thickness: > 5 MM
Clark Level: AT LEAST LEVEL 4
Ulceration: PRESENT
Margins: DEEP MARGIN POSITIVE FOR INFILTRATING MELANOMA. Because of the polypoid nature of the lesion, there is essentially no lateral margin to the specimen that is distinct from the deep margin.
Mitotic Rate: HIGHLY VARIABLE; UP TO 5 PER SQUARE MM IN SOME AREAS.
Microsatellitosis: NOT SEEN
Lymphovascular Invasion: PRESENT
Metastases: UNKNOWN
Pathologic Staging (pTNM): T4b NX MX

DBD/dbd

Gross Description: blah blah blah

This is concerning to me. Can someone give input as to what this means?

Thank you.

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Replies by: POW, Rebecca and Bob

 

Hello,
I am stage 4 melanoma survivor who is assessing the risk of pregnancy after cancer.  I have been in remission for 6 years and would love to start creating a family.
 
I am in the process of researching everything there is to know about pregnancy and melanoma.  I have found many studies about stage 1, 2 and even stage 3, but am yet to find anything on stage 4 survivors.  Is there anyone out there that is a stage 4 survivor that has had a successful pregnancy or know anyone who has?
 
 Thank you in advance for any help you are able to offer me.
 

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ecc26's picture
Replies 12
Last reply 5/30/2013 - 4:49pm

Hello everyone,

I'm 31 years old and was first diagnosed with melanoma from a mole on my upper back in Jan 2011. At the time I was a stage 3 with only 1 lymph node testing positive for any melanoma (after complete lymph node resection of the right axillary (armpit) area). I completed a full year of interferon and just prior to the end of that therapy found a mass in the scar tissue from the lymph node surgery. That was removed (along with any other tissue that might have lymph nodes in it that they could find) in July of 2012. The mass was melanoma and they couldn't tell if it had been a lymph node or not by the time they took it out. In November 2012 I found (and biopsied) a very small, irritated mass on my left lower abdome that turned out to be melanoma and that put me into stage 4.

A rush of imaging and other testing got me ready to start IL2 in December 2013, which my team of local oncologists, specialists at Roswell Park in Buffalo, NY and myself decided was the best first option. My scans showed only 3 mets, all subQ, with 2 tiny (questionable) lung mets, but by the time I finished my first week of IL2 I had found at least 4 more subQ's. I had severe side effects from the IL2 and they cancelled the second week, opting instead to rescan in one month to determine if there had been any benefit. After some arguing on my part about the scans (there had been some apparent progresstion since the previous scan, but I had found tumors prior to the start of IL2 that had not been visible on the previous scan so I argued for another try with the IL2) I checked back in for a second round. I tolerated round 2 much better than round 1 and was able to complete both weeks. 8 weeks later (march 2013) the scans showed that with the exception of 2 tumors (both subQ) ALL of my other tumors had either shrunk or dissapeared. My husband and I were thrilled and happy to check in for round 3 thinking that we had gotten this thing under control.

By the end of the second week of round 3 I could feel that the last 2 tumors that hadn't shrunk on the scans were shrinking and I was on coud 9. Less than a week after I got home from the hospital after round 3 though I had a very sore area over my left pectoral muscle that made me worry. 2 days later I had another sore spot on my lower abdomen. I made an appointment and long story short I now have over a dozen new subQ tumors- several of which have appeared with very large bruising. More than half of them are concentrated in my left breast. I have several questions in my search for information:

1) Has anyone else had an apperant good response to IL2 then had a relapse (and if so, does anyone know of anyone that relapsed so fast)?

2) How common is it to have pain/bruising with the appearance of subQ mets? I've had several subQ's before, but never the inflamation/bruising. Does this mean it's worse this time?

3) I've been told that I have to have failed Ipi before I can begin a clinical trial, but I'm really worried that with the speed tumors are popping up I won't survive the 6 months it takes to determine if I've failed- any thoughts from anyone that has tried Ipi?

4) I think it's odd that so many are concentrated in my breast- has anyone else experienced this "clustering" of tumors? Also, of all the tumors, there are only 2 on the right side of my body- all others are on the left- again has anyone else experienced this sort of "one sided disease"? I had also noticed during the IL2 that the tumors on the left side of my body (the subQ's that I could feel) seemed to respond slower/less than those on the right side.

 

I had a CT late last week and I get the resluts to day- I'm more nervous than I think I've been for any of my appointments ever. 

 

UPDATE MAY 28

Thank you all for your replies so far. Many of you expressed a need to be informed and active in the decision making process and I couldn't agree more. It's your body and your future and you need to have a say. Rest asured, I'm no push over when it comes to medical anything and I obtained my veterinary degree (which many people, physicians included, don't realize is nearly idenitcal to a human medical degree and certainly just as expensive) just 6 months before my diagnosis and since then have been reading all the same information as any doctor I've been speaking to. For the most part they enjoy my medical expertise as it allows them to discuss factors and options in greater detail than they often are with other patients, but it's taken some getting used to for them with regards to me insisting on seeing all of my imaging for myself (not just relying on reports, etc and I'm entirely unsatisified with human pathology reports- there's almost no usable information in them in comparison to what we get for veterinary path reports) and there have been times when I've argued with their opinions. I'm a regular reader of the research and am very familiar with how trials work, etc. I'm very comfortable with the science and frankly hadn't posted anywhere before becuase my brain is much better with studies and statistics, but I was running into trouble trying to track down statitics to answer some of my questions about what was happening to me now. 

With regard to the BRAF mutation, at some point late in 2012 (right around the time I started the IL2) I was told that I had been tested for the BRAF and was positive for the mutation (meaning I am eligilble for the BRAF inhibitors), but there seems to be some trouble tracking that result down, making me wonder if I really was tested or if someone mis-spoke when they told me I was positive. I generally insist on getting copies of all my test results (it helps me process to see them for myself and it gives me a nice portfolio to take with me to specialists, etc) but dropped the ball on that one- should have gotten a copy at the time. 

My appointment today was as good as it was likely to get, I suppose. The CT showed that so far the only new tumors are subQ, although I still need to get a brain MRI to rule in/out any cranial mets. I still have the 2 small lung mets that were present since around the time I started IL2 but they haven't grown and the tumor in the body of T10 that was causing me so much trouble in February has shrunk even more than it had in my scan one month ago. In addition, with the exception of 1 tumor (which is now half the size it was) all of the subQ mets from before/during the IL2 are gone. So It appears that the IL2 did do some good, just not enough/not as much as I and my doctors thought it was. Given these results and the realization that the anti-PD1 trial being opened by the specialist I had been seeing was randomized with chemo in addition to requiring trying Ipi first we (myself and my local oncologist) have decided to schedule an appointment at Dana-Farber in Boston, MA to discuss possibly joining one of their trials, etc. I have to wait another 1-2 weeks anyway before starting either a trial or Ipi since I'm so close to my last round of IL2 so it makes sense to maybe take a look at some other area cancer centers and see what's available for me. I'm also curious about the T-cell therapy trials, although I haven't had time to research the trial results, etc much yet.

Thanks again everyone for posting and for the info about your experiences and trials- it's really not that easy to research what trials are available or rather what the mechanism/action of the drug being tested is.No one wants to divulge their reserarch before it's patented, but it can be hard to sift out which are the PD1 and which are other less promising therapies.

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deeczar's picture
Replies 8
Last reply 5/28/2013 - 2:02pm
Replies by: POW, deeczar, NYKaren, Anonymous, jmmm

Quick rundown... 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark's level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It's late and I'm tired and worried so I hope I haven't confused anyone too much. Thanks ahead of time.

Dee

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Quick rundown... 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark's level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It's late and I'm tired and worried so I hope I haven't confused anyone too much. Thanks ahead of time.

Dee

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Quick rundown... 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark's level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It's late and I'm tired and worried so I hope I haven't confused anyone too much. Thanks ahead of time.

Dee

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Tiggerific47's picture
Replies 7
Last reply 5/28/2013 - 1:07pm
Replies by: kylez, NYKaren, jmmm, POW, Janner

My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.  She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size.  She wants to get on anti pd 1 badly.  At this time we are being treated at the melanoma center at Yale in Ct.  If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo.  She wants nothing to do with general chemo.  We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment.  We are willing to travel and really would like to find a non randomized study.  Any suggestions would be greatful.

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Tiggerific47's picture
Replies 3
Last reply 5/28/2013 - 10:01am
Replies by: Anonymous, jenn84

My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.  She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size.  She wants to get on anti pd 1 badly.  At this time we are being treated at the melanoma center at Yale in Ct.  If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo.  She wants nothing to do with general chemo.  We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment.  We are willing to travel and really would like to find a non randomized study.  Any suggestions would be greatful.

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Kelly7's picture
Replies 1
Last reply 5/28/2013 - 1:05pm
Replies by: hbecker

Happy Memorial Day!

I just wanted to update you on my brother's situation. 

To sum up:

3 tumors on Lung, stage 4(original site was on his back 4, 7, and 9 years ago)

IL2 (2 weeks in the hosptial, 20 bags total) February 2012

Yervoy  April -June 2012 (4 injections over 2.5 months, serious colitis in August-September) 

Latest scan May  2013, One tumor remains, intensity has shrunk. Doctor wants to cut out the last tumor, located on the outside of lung.

 

Surgery scheduled for June 6th! 

Will keep you updated. Hope this is the break we have been begging for.

 

 

 

 

 

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ad2424's picture
Replies 2
Last reply 5/28/2013 - 10:14am
Replies by: jcmp, Cindy VT

 

I'm telling my experience in the hope that it can help others. It took me a year and a half to get the courage/strength (mental) to write this.

In 1994, I had a mole removed from my back which was determined to be melanoma. I had a WLE but no treatment. In June 2011, I had a funny looking mole on my chest removed which was metastatic melanoma. Through VAT, I had a portion of my lung removed in July 2011.

I began to research adjuvant clinical trials. I was considering a trial with Dr. Webber. At my first three month scan on October 20, nodules were found throughout my lungs. So much for an adjuvant trial. They were all very small, measuring less than 1 cm. Since they were not big enough for me to qualify for a clinical trial, my choices were IPI (20% 5+ year survival in latest stats), IL-2 (stats below), or Zelboraf. I chose IPI but decided to scan again in one month, because after discussions with my doctor, we wanted to make sure they were viable and really growing.

The November scan showed some minor growth and so it was time to begin. I changed my mind though. I decided to first go with IL – 2.

There were a few reasons I made this decision. (a) I was otherwise very healthy and in good shape
(51 y/o, 5’8”, 150 lbs, running 2 miles a day). (b) The nodules were small and growing very slowly.
(c) There was belief among experts that one therapy might help a subsequent therapy.
(d) Finally, I wanted as many chances to kill this as possible. As a noted melanoma oncologist told me at the time:
High-dose IL-2 is still considered as a first therapy in this situation (it can eradicate disease, it doesn’t
burn any bridges, and appears to make subsequent immunotherapies work better).

I knew the treatment would be rough, but I also knew that I was in good hands. Dr. Janice Dutcher in New York had done more of this type of treatment than anyone else in the country. IL-2 has a 6% complete response and 10% additional partial response (http://www.ncbi.nlm.nih.gov/pubmed/10685652). Not great odds, but again I wanted as many chances to kill this as possible.

I suffered through three week-long stays in the hospital (Monday through Friday actually). After staying home one week after each week in the hospital, I was able to go back to work. It took a while but I am back to running 2 miles a day.

The good news, for now at least, is that my nodules have been stable since then. That makes about a year and a half. So, maybe I'll get a few more months of stability, maybe a few more years, or maybe my next scan will show the stability has faded. My main reason for writing this is because I think IL-2 has a bit of a bum rap. Yes it is harsh. But for those in certain circumstances such as me, it was not an unreasonable step as a first option. 

 

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Ronskidtexx's picture
Replies 1
Last reply 5/27/2013 - 7:41pm
Replies by: BrianP

The good news I am still NED of Stage IV Melanoma after 15 months. The disappointing news is that during my recent CT's of my abdomen, they found a suspicious spot on my pancreas. Turns out to be a Endocrine tumor. Totally unrelated to melanoma. The good news is it is the non-aggressive type of pancreatic cancer. Only less than half an inch in size. Distal pancreactomy surgery scheduled for June 3rd. Saving the spleen. Oh well, guess I will be a two time survivor of cancer!!!!! Scanning for melanoma reoccurances saved me on this. Usually no symptoms untill too late and has spread. Don't stop scanning every 3-6 months people. Cancer is not getting me! I am a tough SOB!!!!!!!

MD Anderson Houston-a great place for eliminating cancer.

Ron

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_Paul_'s picture
Replies 14
Last reply 6/3/2013 - 10:29am
Replies by: Linny, POW, _Paul_, kpcollins31, Jim M., Anonymous, NYKaren, hbecker

Hi All,

I have been digging around this site and the internet for the last few weeks trying to discover applicable treatment options following my recent local recurrence without much success. The recurrence presented as a small blue nevus in the original excision site. I had a more aggressive re-excision done (approx. 2.5" x 3") on the vertex of my scalp.

My oncologist (who is a melanoma specialist, Dr. Kim Margolin at SCCA here in Seattle) pretty much thinks I should watch and wait. I already completed the treatments of one clinical trial at Hopkins for their GVAX vaccine (it was disappointing that it recurred and makes me think that the treatment was unsuccessful).

I am hoping to draw on the amazing collective wisdom and knowledge of this site to find out what if any other treatment options are available. I don’t like to watch and wait, I want to be more proactive! So specifically, I am NED, 3c (according to my oncologist—because of the recurrence), and have not been tested for BRAF. I have looking over applicable clinical trials, but they all pretty much require evident disease, not NED.

Thanks in advance! – Paul.

To exist is beyond fantastic.

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becky62's picture
Replies 5
Last reply 5/27/2013 - 8:39pm

I had "thing" on my upper calf that started as a small bump under my skin in late 2011.  Mentioned it to my PCP in spring 2012 and she said that it looked like a cyst and gave me cards for a plastic surgeon and a general surgeon.  Perfectly round, didn't hurt, didn't bother me at all.  Didn't do anything about it and it slowly grew.  Finally decided in Jan. 2013 to go get this "thing" removed after my 14 year old son said it was ugly.  Went to the general surgeon and he looked at it and said it could be a cyst or a collection of clogged varicose veins.  Had it removed on March 7th and after surgery he still said it looked like varicose veins.  Went back a week later and he said the pathaology report said it had melanoma cells in it and it was being sent to the Cleveland Clinic to have it looked at.  Went back the next week and he handed me the report and the diagnosis said metastatic melanoma. This "thing" measeured 3 x 4 x 5 cm.

I got in within a week to see a plastic surgeon, dermatologist, and oncologist at the Cleveland Clinic all on the same day.  Met with the surgeon first and he ordered the Pet/MRI scans and the plan was if the scans were clear then he would go back into my leg and do a radical surgery to make sure the margins were clear.  Dermatologist looked me over and I had nothing suspicious.  Oncologist explained the types of tx. available, but it all depended on what the scans said.  Over the next two weeks I had the PET scan(which my insurance company denied initially, until the surgeon called them to explain why I needed it.  Just fyi, don't take no for an answer with the insurance companies), and the MRI.  MRi came back clear, but the PET scan showed a 1cm nodule in my right lung and a few subcutaneous nodules.  Diagnosis Stage IV with unknown primary.  Oncologist strongly suggested the Yervoy tx. but wanted me to take a few days to make sure I was 100% on board with it and he also suggested a second opinion.  There would be no surgery on my leg. 

I've had two infusions of the Yervoy and I go tomorrow to have a CAT scan, labs, and hopefully find out the BRAF results.  My side effects of the Yervoy have been tiredness and some diarreha.  My questions are:

Is it too soon to have the scan done after only 2 tx's of the Yervoy?

Does it normally take a couple of months for the BRAF results?

What else should the original biopsy be tested for?

I'm already looking ahead to clinical trials and my oncologist said the University of Pittsburgh has a good program.  I'm going to bring up Johns Hopkins tomorrow too.  What do you all think?

Has anyone gotten help  with the Bristol Myers program for coapys for the Yervoy?

I've been stalking this board for 2 months and after reading Alana's post, I wanted to share my story. This whole experience has really thrown me for a loop.  I'm a pretty healthy person and never had surgery other than a c-section.  I still believe I am in some denial after nearly 3 months of this, but I firmly believe you have to be your own best advocate and educate yourself,  I read these posts every day and get inspired by peoples stories and have learned so much.  Thanks to all!

 

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I was just "diagnosed" with Stage IV Melanoma from a pathology report. I had what I believed to be a small wart on my inner ankle about two years ago. Within the last 6-7 months it grew to a size of 2 1/4" x 2 1/2". There was no discoloration but it had the appearance of a mushroom. It was approximately 1/2" above the skin, almost perfectly round but the edges of the tumor were not attached to my skin but it had an inner stalk similar to a mushroom. My primary examined it and was certain it was a skin cancer but not sure what kind. She referred me to a skin specialist who upon immediate examination was dumbfounded by the appearance but concerned with my medical history. I am a 40-year-old female. I was born with benign tumors on my tongue. They would surgically remove them and eventually they would grow back- always benign however. I have had three major back surgeries. I just battled thyroid cancer in March of 2012 and currently cancer free in regards to that, I just have to take Synthroid for the rest of my life. I was diagnosed with fibrocystic disease of the breasts, I have cysts on my kidney, the pineal gland in my brain, my cervix and my sinus cavity.

Last Monday I returned to my skin doctor to have the stitches removed and receive the biopsy results. It was just myself and my 2-year-old grandson. As soon as he walked in the room I knew it was bad. He was looking down and shaking his head with my file in hand. He told me it is the worst cancer they have seen in years and it looks very bad. I asked if I was going to die and he said, "very likely." He told me that the pathologist called him immediately upon examining the tumor and surrounding tissue. I asked what it was and he said, "Stage IV Melanoma." He said the entire sample which was almost 3" x 3" was nothing but cancer cells, so it is much deeper than the amount he took.

He set me up with a team of oncologists at Johns Hopkins University. I was very skeptical on how the doctor could stage me just from a biopsy report. So I asked the doctor from Hopkins how he could stage me from just a pathology report and she told me it was the depth of the cancer cells in the tumor and tissue. Because the entire sample in regards to the size of the tumor removed was nothing but cancer cells they can be fairly accurate to give an appropriate stage.

I am scheduled June 4th for my first consult with the oncologist at Hopkins. He will review my medical history, the pathology report, what their plan will be and what I can expect. Then they will schedule my first surgery to remove more of the cancerous tissue and re-biopsy it as kind of like a second opinion, just to be sure they are certain of what they're dealing with. Then from there many more tests, procedures and surgeries will follow.

Of course, its only been a week since receiving the news and I'm still trying to cope. ompletely devastated and scared. I just don't understand how they can stage a cancer from a biopsy/pathology report?

I know I will be in the best of care at Johns Hopkins being its one of the top hospitals in the world dealing with cancer and serious diseases but can they stage melanoma from a pathology report from a biopsy? Its a nodular melanoma.

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