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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becky62's picture
Replies 3
Last reply 5/29/2013 - 9:58pm

I've had two in fusions of Yervoy and I have received the first claim submitted to my insurance company.  My provider charged my insurance company over $205,000 for one infusion.  My insurance company has a contract with the provider for $102,000 for one infusion.  My dosage was 336 mg.  I thought this drug was about $30,000 for 200mg.  Is this normal for providers to charge this kind of money for drugs?  I am shocked.  My insurance has a yearly cap of $250,000.  I'll run out of coverage with my 3rd infusion.  Any advice or help with this kind of situation would be greatly appreciated.

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Tim--MRF's picture
Replies 12
Last reply 6/2/2013 - 7:48am

The FDA just approved two new drugs for treating metastatic melanoma.  One is a BRAF inhibitor, similar to Zelboraf (vemurafenib).  The other is a MEK inhibitor.

The MEK inhibitor can be used in patients whose tumors do not have the BRAF mutation, and also is being tested in uveal melanoma.

The biggest use, though will likely be in combining the BRAF and MEK inhibitors.  Studies have shown that patients with the BRAF mutation who were treated with the combination had better response, longer response, and fewer side effects. 

Here is the press release:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm354199.htm

This is big news for the melanoma community, and a great step forward!  We still have a long way to go, but two new drugs is a good thing.

Tim--MRF

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flvermonter's picture
Replies 5
Last reply 5/30/2013 - 7:52am

Where would I go to look at help for llung cancer?  My husband has stage iiic melanoma and stage 1 lung cancer.  They have only the clinical stage for the lung cancer until they remove the cancer, and surrounding lymph nodes.  You have all been so helpful to me in regard to his melanoma, but not sure where to go for the lung cancer experience and help. 

 

His lung cancer clinical diagnosis is that one was a 1.1cm, that is now 1.5cm and a 1.9cm that is now a 2.1cm. 

Thanks, Mary

Hugs to all, patients and care givers.

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Who_am_i's picture
Replies 3
Last reply 5/30/2013 - 5:17pm
Replies by: ecc26, NYKaren, POW

I had my biopsy results 5/22. My first oncologist/ surgeon team meeting is not until 6/5. My derm told me I would be fast tracked for SNB and excision. Now that is not happening till who knows when. I know I'm supposed to be patient but must admit it is starting to get harder.

Thanks,
Patti

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Anonymous's picture
Replies 2
Last reply 5/29/2013 - 10:42am
Replies by: Linny, Janner

I am really scared. Until today, melanoma was hardly on my radar. But the other day, a colleague came up to me after a meeting and suggested I get the mole on my arm checked out. I took her seriously because I have been wondering if it has been changing over last few months myself, but clearly haven't been paying enough attention, or I would have been to the doctor already.  I went today and the doctor took it really seriously, I was shocked. He asked me all sorts of things including family history of melanoma.  I am travelling at the moment, have an appointment with a specialist next week to have it excised and checked. The doctor I saw today made me promise to get it out as soon as I was home and definitely in no more than a week or so. Of course have been looking on internet today and reading, and my instinct says that this is a melanoma. It fits almost of those abcde or whatever things (except family history). Have been hoping to find some reassuring statistics saying that only a small proportion of spots sent off for testing are melanomas but can't find anything of the sort, which is making me worried. I can't stop crying, I am really nervous. Am I realistic to be worried?  Are there any reassuring statistics out there? I really appreciate your taking the time to read this and any advice you might be able to provide. 

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Anonymous's picture
Replies 3
Last reply 5/29/2013 - 9:45am
Replies by: Janner, Anonymous

My husband got diagnosed as lentigo maligna of the left ear auricle from a punch biopsy. (Mar, 2013)

He had a wide excision surgery at another hospital (Apr, 2013) and here is the exact copy of the post-surgery pathology report.

------------------------------------------------------------------------------------------------------------------------------------

Name of the specimen:  Skin

Test items:  Gross Photo (2ea)

                      Immun[ki-67(M1B1)]

                     Immun[Melanoma Ag(HMB45)]

                      Immun[S-100]

                     Immun[Melan-A]

                    [Resected Specimen]no more than 6  Histopath Exam

 

<GROSS DESCRIPTION>

The specimen labeled as  “left ear choncha area” consists of a portion of choncha, measuring 3.0X2.8X1.0cm. The skin shows a dark brownish pigmented lesion, measuring 0.7X0.4cm. It is 1.0cm, 1.0cm, 1.3cm, and 1.1cm apart  from the superior,  inferior, anterior and posterior resection margins. Multisected and representative sections are embedded in block A1 to A8.

Color key:   yellow: anterior,  red: superior,  blue:inferior,  green: posterior,  black: deep

 

FINAL  DIAGNOSIS :

Skin, ear, choncha, left, wide excision:

  1. Primary  tumor diagnosis:  Lentigo malignant melanoma
  2. Level of invasion(Clark level):
    1. Confined to the epidermis,

With all tumor cells above the basement membrane

      Note) Use only with thickness 1.0mm or less than 1.0mm(otherwise omit)

      3. Epidermal  ulceration:  Absent

      Note) Difined as the absence of an intact epidermis overlying a major portion of the primary melanoma

 

      4. Mitotic rate: 0/mm2

      5. Resection margin:  Margins  are free of tumor (superior: 1.0cm, inferior:  1.0cm, anterior: 1.3cm, posterior: 1.1cm, deep: 0.4cm)

      6. Additional features:

Lymphovascular invasion:  Absent

Neurotropism: Absent

Intraepidermal pattern(lentiginous)

Cell type(epithelioid)

Associate nevus(not  identified)

Lymphocytic infiltrate(non-brisk)

Desmoplasia: Absent

Tumor regression: Absent

      Note)  1. The result of immunohistochemistry;

HMB45: Positive

Melan-A: Positive

 S-100: Positive

 Ki-67 labelling index:  <5%   

                2.  Mapping is done.

                3. Intradepartment consultation is done.

------------------------------------------------------------------------------------------------------------------------------

 

I left what looks like spelling errors to me like “choncha” and “difined” the way they are, as I am not exactly an expert on these things.

 

My questions are:

  1. What is “lentigo malignant melanoma”? I have seen information about “lentigo maligna” and” lentigo maligna melanoma” but I have never heard of “lentigo malignant melanoma”.  Is it a spelling mistake? Or is it something else?
  2. Our dermatologist had said “lentigo maligna” is different from “lentigo maligna melanoma”, in that the former is a precursor to cancer, for which wide excision is required to prevent it from becoming a cancer. He said that unlike the latter, PET scan is not necessary for “lentigo maligna”.

But the surgeon he referred us to said “lentigo maligna” is one of the four major types of melanoma and prescribed PET-CT and CT scan, saying the parotid gland possibly has to be removed. This confusion and the conflicting information was the major reason why we changed hospitals.

Anyway, our new surgeon(a very specialized ear-reconstruction surgeon) said, after the surgery was done and the final pathology report was written, that my husband’s final diagnosis “lentigo malignant melanoma” is correct, but it is still the same diagnosis as the initial biopsy result. This doesn’t make any sense to us. Who/what should we trust and what should we do?

      3. What do the items in the parenthesis mean? And the result of the immunohistochemistry?

Intraepidermal pattern(lentiginous)

Cell type(epithelioid)

Associate nevus(not  identified)

Lymphocytic infiltrate(non-brisk)

       4. Is there a chance that the bad cells have spread to other parts of the body, because the initial punch biopsy cut into the tumor? One of the surgeons who did the surgery(a resident) mentioned it. This makes me really scared.

 

The whole medical process seems to be very disorganised and it is very confusing and disappointing.  I live in an Asian country where skin tumors are very rare and my husband is a Caucasian.  I couldn’t find any information on these anywhere in my native language. I will really appreciate your help. Thank you very much for reading this long post.

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/30/2013 - 12:12pm
Replies by: Anonymous, michelleg, BrianP, JGreen, kpcollins31, hbecker, Janner

Just found out a family member has stage iv melanoma - mets in lungs, liver, and lymph. We all live in North Carolina and had an initial visit at duke (not very impressed with staff there so far - does anyone have experience? I cant get over how long it takes to schedule anything). They recommend il-2 as first line treatment followed by ippi (or something like that) if il-2 doesn't work.

Here's my question: is that standard treatment? Is it worth getting a second opinion? My understanding is that duke has the best melanoma treatment in nc - wondering if its worth getting an opinion from another oncologist.

Sorry! This is all still new...

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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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