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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Resilient4Life's picture
Replies 7
Last reply 10/12/2014 - 9:15am

My surgery went "well" according to the surgeon who spoke to my companion that brought me. In the recovery area I pulled up the gown and gazed down on my left upper arm and was shocked by the sight of the incision. It was bigger and it curved here and there. My diagnosis 2 months ago was 1A.

I have waterproof "glue" instead of stitches in the top layer of skin. I was told the underlying layers contain stitches, and the good news is that I don't have to have anything removed. Presumably the glue wears off, and after a 2 week post op check, I see my surgical oncologist twice more at 6 month intervals to confirm there is no new growth at the surgery site.

I understand the mechanics of the WLE, with the primary lesion being excised with 1 cm of good skin surrounding it, then an oval shaped area is cut, to make the closing of the wound smoother, flatter with no bumps or ridges. Still, I was/am distressed by the length of the scar (3 1/2 inches) and the way it looks carved out.

Possible interpretations are; This is normal, the surgeon found something he didn't expect, melanoma excisions aren't supposed to be pretty, straight or asthetic. No one cares about the excision unless it's on your face, and then a plastic surgeon would be called in.

The surgeon told me during the office consult that the depth of epidermis removed is  down to the muscle. I thought I had completely understood everything before I went in. Maybe it's post op blues or just a revisiting of the initial diagnosis when I realized I have cancer. This makes it "real."

I have the ability to use a secure website to ask questions, however the Nurse Practioner that has answered two prior inquires did not even look at my chart before answering. So that avenue is unreliable.

Thank you for any and all responses.

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bostonglory's picture
Replies 4
Last reply 10/12/2014 - 7:55am

Hi there

I had melanoma on my back when I was 16. They did a PET scan and removed bilateral axillary lymphnodes. I have been getting my blood work and x rays until 5 years out (2011).

I had a lapse in insurance and missed two years of skin checks. Anyways, I went to the doctor earlier this week and two biopsies were done. They are relevantly close to where my melanoma was last time. This is a brand new doctor for me too so I wasnt that comfortable. I am awaiting my results but I am also super nervous. I am currently 4 1/2 months pregnant and am paranoid about finding out I have melanoma again and cannot get treatment etc. I work as a nurse and live a super healthy lifestyle excercise, eat right, etc. 

I do not smoke. I dont drink. I wear sunscreen.

 

What are my chances of having melanoma again?

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Girl52's picture
Replies 17
Last reply 10/11/2014 - 9:01pm

Thanks especially to Janner, who has been so helpful, in such a detailed way. I don't want to keep nagging her as new questions occur to me, so want to pose this to all.

My brother-in-law has been diagnosed, via pathology report, with metastatic melanoma of unknown primary. This Tuesday, he will have WLE of spot near elbow, and SNB. Based on whole picture, Janner thinks his primary might have been a regressed tumor also in the skin.

Neither the path report nor doctors has referred to staging (though it must be at least stage III, with any metastasis, correct?).  Slides have been sent to second lab for confirmation of diagnosis. I'm hoping second path report will be much more detailed, with info re: staging, gene involvement, ulceration, etc. Aren't they, usually, in a standard format? 

In researching treatments and clinical trials, criteria for getting a drug or for study participation are sometimes very specific, e.g., "for unresectable stage III patients."

If you have MUP, are you by definition -- and for various purposes -- in the "unresectable" category, along with patients who have identifiable tumors in a location too dangerous to touch, etc.? Have been reading an older thread here titled, "What is Unresectable Stage III Melanoma," and have learned a lot about procurement (or not) of treatment based on these definitions.

Is it usual to have a path report specify a diagnosis of "metastatic melanoma," with no explicit reference to staging?      

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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liam1209's picture
Replies 5
Last reply 10/11/2014 - 7:52pm

my father has metastatic melanoma stage IV (mets in his lungs) and we are deciding wether we start on ipi (hoping it works) followed by anti PD-1 or go the clinical trial route.  Right now he has not done any treatments, and I am concerned once he starts Ipi, he will be limited on his options for clinical trials.  What are some of the best clinical trials out there right now in your opinion that could benefit my fahter? 

 

thank you so much! 

Liam 

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JustMeInCA's picture
Replies 10
Last reply 10/11/2014 - 7:21pm

My father, who will be 83 in a couple months, is Stage IV with several tumors in the area near his knee, which was the site of his primary tumor. He also has a few small mets in the lungs and possibly (probably) one on the hip bone. He's had two Ipi infusions, the last a week ago and so far without side effects, and will start Keytruda in two weeks.

While he has what he calls "some discomfort" in his knee off and on throughout the day, he is mainly suffering pain at night, which keeps him from falling asleep. (Once he's asleep, though, he sleeps well throughout the night.) For the past few weeks, we tried Aleve, which did nothing, and then a prescription of Norco (5/325), which also did nothing. Last week, his doctor upped the Norco to 7.5/325 and said that he should take it every four hours to prevent, rather than try to stop, the pain.

Dad is not one to take painkillers. He had a sextuple bypass about three years ago and refused any painkillers once he left the hospital. He was resistant to even taking Aleve when the melanoma tumors began to hurt, so I know his leg is really bothering him, given that he's been willing to even try all these pain pills. 

Now, however, since  the higher dose of Norco is not helping with the nighttime pain, he has been prescribed Oxycodone for daytime and Oxycontin before bed. We haven't filled the prescriptions yet, and I'm really wondering if this is the right route to take. Dad doesn't want a stronger painkiller, and we've both noticed that since  he's been on the 24-hour pain regimen, he just kind of zones out in his recliner, where before he was out in the yard and making his little trips to the dollar store. He says he feels dizzy off and on now, and he's definitely a bit cranky.

I'm concerned that the new pills will just make things worse. I've been the one pushing him to take painkillers because I hate to know he's hurting, but now I feel bad because they've really stolen his joys in life. I also worry about the Oxy's because of his age. I feel like maybe I should just let him handle things the way he wants to, even if that means not taking any pain meds. He's more than willing now to take a painkiller before bed, but the way it sounds, this Oxy stuff has to be taken around the clock or not at all. And the nurse also told me that pain taxes the immune system and leads to poorer outcomes.

Any advice or input would be much appreciated. 

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Replies by: Carole K

I have two small deep dark moles one arm and  foot. Although very small but it's very strange: no spread, periodically grow up with tough shell then drop, again and again for 3 years. After seeing some material, I'm so afraid that they are or would become nodular melanoma, which grow without spread.

I will stay in San Francisco this winter, so want to see a dermatologist in UCSF (referenced by posts in this forum). However, some posts say that NM is so easy to be missed, so could anyone be so kind to recommend to me an experienced doctor in UCSF? Thanks a lot!

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NancyW's picture
Replies 8
Last reply 10/11/2014 - 8:42am
Replies by: Janner, NancyW, Teochasse, ecc26

A couple of weeks ago I noticed a small, dime sized, barely visible lump on my right shin. Earlier this summer I had a WLE to remove a MM from my right calf, as well as an SLNB on my groin. Fortunately, the margins of the WLE were clear and there was no sign of cancer in my lymph nodes. I was staged at 1B. What I'm wondering is if I should be concerned about the lump on my shin or if I'm just being paranoid? Is it possible that the melanoma  spread to areas other than the lymph nodes and internal organs, despite the fact that there was no sign of spreading after my surgery? My next appointment with the dermatologist isn't until December. Should I get it checked out sooner? I'm not even entirely sure the lump hasn't always been there but I just didn't notice it before.

More background:

Superficial spreading melanoma on right calf

Breslow depth - 1.22mm

Clark level IV

Mitotic rate 3

Chest xrays and abdominal/pelvic ultrasounds showed no signs of cancer.

Any input would be greatly appreciated!

Nancy

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/10/2014 - 8:38pm
Replies by: arthurjedi007, BrianP

Hello All,

A little history first. Diagnosed in 2011 with primary in my calf. Had SLB and WLE and the SLB in my hip showed positive for melanoma. Took wait and see approach until more tumors showed up on my thigh so I went on zelboraf for 6 months until it stopped working. I followed this up with a IPI/IL-2 combination for 6 months when that treatment stopped working too. At a crossroad in life, I took time off of treatment to start a family and when my child was born in May they found a large mass near my uterus wall during the c-section... The location of the tumor was very close to where I had my SLB in 2011, so my Oncologist immediately suggested that it was a tumor in my lymph node. That and the fact that during my pregnancy I had several tumors pop up on my thigh and knee. 

In June I started Anti PD1 and recently had a scan last week that had mixed results. The scan showed some tumors in my thigh getting smaller or staying the same, and according to my DR the tumor near my uterus has not grown, although when we reviewed the scan together it certainly looked larger to me. And from my own observations, over the past 4 months I have felt the tumor almost double in size and even begin to protrude out of my skin a little causing discomfort. 

From what I read on this forum, this could be a good sign. Some report that their tumors grow rapidly before melting away. Unfortunately in my case, since having my scan last week I have had 2-3 new tumors in my upper thigh show up that I felt for the first time in the shower tonight. These tumors were not found in the scan and I'm starting to worry that I am wasting my time with this treatment. 

Any PD-1 goers have a similar experience? I hear it can take up to 6 months for a response but the waiting game is driving me crazy.

If I had to guess, the next stop for me will be TIL at MD Anderson unless i can confirm that I have a response from Anti PD-1. 

Any advice would be great. 

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Anonymous's picture
Replies 2
Last reply 10/10/2014 - 6:46pm
Replies by: Anonymous

Nodular 3.5mm primary melenoma  on leg18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  Was on the ipi vs interferon trial and randomized into the 3mg ipi arm.  Completed all 8 doses of ipi in July and just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  Thank you in advance for any suggestions.

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sweetaugust's picture
Replies 3
Last reply 10/10/2014 - 6:17pm
Replies by: Bubbles, BrianP

Hi guys,

I had treatment on Wednesday and said I would give an update after....as I went into it wondering if anything was going to change for my treatment plan now that Pembro/Keytruda/MK-3475 has been approved by the FDA.  And no, no change for me.  I am still on Pembro for good...with no end date.  And as of now they have no plans to change my dosage amount or 3 week intervals of infusion. 

My question has always been how much is too much and how long is too long to be on the drug.  I've always had it in my mind that at the 2 year mark (which will be in a couple weeks) I would come off the drug and see how I did without it.  My doctors said that they don't really have enough data on patients coming off of Pembro, as most are still on it.  They did mention that a few of the patients that have come off of the Bristol Myers PD1 treatment had their cancer grow back, but then when those patients went back on the drug, the cancer faded away again.  So they are seeing that staying on the PD1 drugs is a good thing.

So I guess the best thing for me to do is to just keep at it...and appreciate that I still feel great everyday. 

How about any others out there on the PD1's.  How long are you scheduled to be on it for?  Are any of you scheduled to come off of it or are you all no-end-date like me?

Thank you and all my best, Laurie

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Ginger8888's picture
Replies 5
Last reply 10/10/2014 - 5:48pm
Replies by: Ginger8888, DZnDef, Anonymous

Although this is not the pure oil that is really benefiting people, hopefully this will work, hoping one day they will approve the pure oil, the cannaboids in it's ingredients are what is "curing" some cancers..

http://illegallyhealed.com/fda-approves-cannabis/

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Anonymous's picture
Anonymous
Replies 13
Last reply 10/10/2014 - 2:14pm

My son had 4 infusions of ipilimulab every 3 weeks through a trial -canada. First CT and PET after the treatment phase showed lymph nodes in his neck were again compromised. His initial mole was on his scalp. He had SNE and a second surgery before starting the trial to excise more lymph nodes.

He met today with the surgeon and he said that The last excision biopsy showed that one lymph node had melanoma. He has an appointment with his oncologist at Princess Margaret Cancer Centre next week and radiation will be discussed together with how to continue. He is BRAf positive. He is 27 old and overall very healthy. He did not experience too many side effects from IPI but fatigue + night sweats ended.

many wonders in my mind: is he having a slow rsponse to IPI? Should he continue with the maintanance phase of 4 infusions every 12 weeks? We are very hesitant about permanente side effects of radiation? Is having radiation an impediment for having more treatment or trial options? 

Thank you for your input in advance

M

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adriana cooper's picture
Replies 2
Last reply 10/10/2014 - 8:46am
Replies by: ecc26, DZnDef

Not the news I wanted but not really surprised. So far I still have my tumors in my lungs with some growth. Not sure right now if its true growth or if its swelling from the IPI. My lymph nodes in my chest are now involved they have not been before. I will be getting a new scan in two months to recheck my tumor growth. I have nicknamed the lovely tumor on my arm that will not be easily killed off Frankenstein, he has been removed came back then radiated and has come back. I will be taking some time off from any treatment to spend quality time with my family and just for a little while try to forget what is waiting. Will be doing some research on what is the best treatment option for me. I am BRAF positive. Still keeping a positive outlook. With my wonderful boyfriend by my side I will stay positive. Good luck to all

Adriana

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DMU's picture
Replies 7
Last reply 10/10/2014 - 5:41am
Replies by: DMU, Janner, Ginger8888, Anonymous

Hi! I just had a mole on my back removed and had to wait a week for the biopsy to come back. Nurse called to tell me I had Clark level 2 melanoma, and I had to see a plastic surgeon. When I ask what it meant she told me they did not understand the biopsy report.  Scary.

 

 

since I already had 3 years ago basal cell carcinoma on my face with reconstruction surgery, I knew it wasn't good.

Now I go to the plastic surgeon on Oct.,13, and have no idea what to expect. My Family is freaking out, and I'm just trying to hold things together. I'm happy I came across the melanoma site, it has been very helpful. I hope everyone has a great daty. Thanks.   :)

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Intralesional injections show promise for cutaneous melanoma   7 Oct 2014

https://www.google.com/search?q=%22IPI-145%22+AND+melanoma&ie=utf-8&oe=u...

7 Oct 2014

by ecancer reporter Janet Fricker

The poster session ‘Melanoma and other skin tumours’, held at ESMO 2014 in Madrid, highlighted the emerging field of intralesional injections for cutaneous melanoma leading to tumour regression not only in the injected lesions, but also in ‘bystander’ lesions suggesting that the strategy is augmenting immune response.

Cutaneous melanoma represents a persistent morbidity, including disfigurement accompanied by pain, ulceration, bleeding and infection.

Despite locoregional therapies, such as surgery and radiation, a significant percentage of patients have locally advanced disease at high risk for recurrence, progression and metastasis.

Now a number of new approaches are exploring intralesional injections of oncolytic viral immunotherapy and dyes to eliminate patient symptoms and prevent progression to stage 4 disease.

First, poster 1102P reported on an extension of the phase 3 OPTiM study in patients with unresected Stage IIIB-IV melanoma treated with Talimogene laherparepvec (T-VEC), a herpes simplex virus type 1-derived investigational oncolytic immunotherapy¹.

Earlier, at ASCO 2014 the investigators had shown that median overall survival was 23.3 months for the T-VEC arm compared to 18.9 months in the granulocyte macrophage colony-stimulating factor (GM-CSF) arm (HR 0.79, P=0.051).

Extension treatment was made available to patients who did not have clinically relevant progressive disease or who had experienced a complete response and then developed a new lesion within 12 months from the end of last treatment.

Altogether 31patients were enrolled into the extension trial, including three from the GM-CSF arm and 28 from the T-VEC arm who continued on randomised treatment for up to 12 months.

Results showed the best overall responses improved in seven patients in the T-VEC arm, with five patients who had a partial response in the main trial and two patients who had stable disease in the main trial achieving complete responses.

The adverse events reported were grade 1 or 2 in severity and did not lead to discontinuation.

“We were able to show that in some patients whose disease had returned we could get them back into remission by re challenging them with the agent. We also showed that T-VEC was very tolerable with no additional toxicity burdens for reinjection,” explained Kevin Harrington, study author from the Institute of Cancer Research, London.

Next poster 1103P, which received a best poster award, presented information on the CALM study exploring intralesional injections with a different virus, this time Coxsackievirus (CVA) A21, a naturally occurring ‘common cold’ intracellular adhesion molecules1 (ICAM1) targeted RNA virus.

In animal models, it has been shown that CVA21 lysed tumour cells induce a secondary systemic host-generated anti-tumour immune response.

Results of the phase 2 study showed that 22 out of 57 of stage IIIC and IV melanoma patients (38.6%) met the primary endpoint of immune-related progression free survival (irPFS) at six months.

The secondary endpoint of objective response rate (complete response partial response, according to irRECIST 1.1) was 28.1%.

Finally, poster 1120P provided the latest analysis of a phase 2 study evaluating intralesional injection of PV-10, a 10% solution of the dye Rose Bengal, in 80 patients with stage IIIB-IV melanoma².

The rationale for PV-10 is that the agent has a local chemo ablative effect where it enters lysosomes causing local necrosis, and then in some patients a systemic effect believed to be immunologically mediated.

Following injection previous studies have demonstrated increased CD8 , CD4 , CD3 and NKT in peripheral blood.

For the subgroup of 28 patients who had all their lesions injected with PV-10 (i.e. had no uninjected lesions), the poster showed the overall response rate was 71% (CI 51-87%) with 50% achieving a complete response (CI 31-69%).

The abstract furthermore showed marked differences in progression free survival according to number of lesions injected.

The 28 patients who had all their lesions injected showed a progression free survival of 9.8 months compared to six months for the seven patients who had a median of five untreated lesions.

“The progression free survival of 9.8 months compares favourably with historical progression free survivals of less than 2.5 months for DTIC/TMZ, “said Sanjiv Agarwala, the first author from St. Luke’s Hospital and Health Network, Bethlehem, Pennsylvania.

Such data he added, suggests PV-10 will deliver significant progression free survival effects in the phase 3 study, due to start Q4 2014.

“The abstract also shows us that we’re likely to get the highest responses when all lesions are injected.”

Additional data showed that for the 232 lesions that achieved a complete response 121 required a single injection, 84 required two injections, 22 required three injections and five required four injections.

“The few injections needed in this study bode well for patient compliance with PV-10-treatment,” said Eric Wachter, Chief Technology Officer of Provectus.

I'm me, not a statistic. Praying to not be one for years yet.

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