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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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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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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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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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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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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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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Anonymous's picture
Anonymous
Replies 6
Last reply 10/14/2014 - 7:54am
Replies by: Anonymous, Carole K, Janner, JerryfromFauq

This is a little after the fact now, but should I be concerend that my melanoma was dx with a shave biopsy?   .86MM Thick.     I have been reading that this is not the best method when melanoma is suspected.   

DX as of now  Nevoid melanoma .86mm thick, Clarks level III, Mitioc rate of 3  No ulceration, Non Brisk

Both radical and vertical growth present 

Predominat Cytology:  Epitheloid

Thanks

g

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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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Ginger8888's picture
Replies 6
Last reply 11/11/2014 - 5:50am
Replies by: enatti, 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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Leslie'sHusband's picture
Replies 6
Last reply 10/16/2014 - 8:53am
Replies by: Leslie'sHusband, Marianne quinn, Anonymous

Les had her CT scan at Duke two weeks ago.  She was supposed to get a PET/CT with contrast, but once again, insurance got in the way of what the doctors requested.  Anyway, they found a place on her liver, and a small spot on one of her lungs.  The doctors requested an MRI to take a closer look at the liver, but seem to not be excited about the lung.  We head back to Duke tomorrow for the MRI.  Here is what was written about the CT:

CT chest, abdomen, and pelvis with IV contrast

Comparison: Outside PET/CT dated 2/27/2014.

Indication: V10.82 Personal history of malignant melanoma of skin, eval
for metastases

Technique: CT imaging was performed of the chest, abdomen, and pelvis
following the uncomplicated administration of intravenous contrast
(Isovue-300, 150 mL at 3 mL/sec). Iodinated contrast was used due to the
indications for the examination, to improve disease detection and to
further define anatomy. The most recent serum creatinine is not available.
3-D maximal intensity projection (MIP) reconstructions of the chest were
performed to potentially increase study sensitivity. Coronal images were
also generated and reviewed.

Findings:
Chest:
There is a faint nodular opacity measuring 4 mm in the right lower lobe
(series 6, image 37). There is bibasilar atelectasis and scarring. There is
biapical pleural scarring.

The thyroid gland is normal in appearance. There is no evidence for
axillary, mediastinal, or hilar adenopathy. The heart is normal in size.
There is no pericardial effusion. The pulmonary parenchyma is normal in
appearance, with no abnormal pulmonary parenchymal opacities. There is no
pleural effusion. The central airways are patent.

Abdomen/Pelvis:
There is a enhancing lesion within the dome of the right hepatic lobe
measuring 1.7 x 1.3 cm (series 6, image 52). No additional hepatic lesions
are identified.. There is no intrahepatic or extrahepatic biliary
dilatation. The hepatic arteries, hepatic and portal veins are patent. The
gallbladder is normal. The adrenals, pancreas, and spleen are unremarkable
without evidence for focal lesion.

The kidneys enhance symmetrically. There is no pelvicaliectasis or
ureterectasis. There are no renal parenchymal lesions.

There are multiple loops of nondilated large and small bowel without
evidence for bowel obstruction or bowel wall thickening. There is no
abnormal mesenteric stranding. There is no mesenteric or retroperitoneal
lymphadenopathy. The urinary bladder is normal. There is no pelvic
lymphadenopathy.

There are no suspicious osseous lesions. There is a scoliotic curvature of
the thoracolumbar spine with degenerative changes.. There is a stable
sclerotic lesion in the left pubic ramus. There is a soft tissue density in
in the anterior left thigh measuring 2.5 x 1.4 cm, which is likely
postoperative (series 6, image 125).

Impression:
1. Hyperenhancing lesion within the dome of the right hepatic lobe, which
is indeterminant. Differential diagnosis includes both benign and malignant
pathology (benign: FNH, adenoma; malignant: metastatic melanoma). Further
is characterization with MRI is recommended.
2. Tiny right lower lobe pulmonary nodule.

 

We will be taking a print of this with us to ask questions as there are a couple of things mentioned that concern me that the doctors don't seem excited about.  I am going to do a little research into the medical terminology in the report this evening to try to put things in 'layman's terms' to try to understand better, and be able to ask intelligent questions. Hopefully the MRI will bring good news...

 

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MattF's picture
Replies 4
Last reply 10/9/2014 - 4:26pm

Quick Update

Stage IV in Dec 2013

BRAF Combo MEK and TAF ...Dec 2013 to Jun 2014

Yervoy completed a couple weeks ago.

 

Latest PET/CT showed some of the tumors have shrunk, some grown and some stable....there are however a few new items that showed up.

Paperwork and Authorization went in today for Keytruda. Which Doctor hopes starts within the next 14 days.

Just as backround....I have a number of tumors on my thighs, pelis etc and have had radiation there.....also 7 Mets in brain and have had SSR to brain in Aug 2014.  I am borderline Anemic.....I also have swelling in feet and ankles over the last 4 weeks...

Thoughts on the plan....

 

I mean Keytruda is pretty much next right?

 

Matt

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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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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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ecc26's picture
Replies 8
Last reply 10/9/2014 - 6:54pm

or, at least I'll try to be quick- I tend to be rather verbose...

On Monday I travelled to the Roswell Park Cancer Institute in Buffalo, NY for a recheck MRI and surgical follow up. It's been about 3 weeks since my craniotomy for a 3.5 cm metastasis in my right frontal lobe. The original plan when I was discharged was to heal for 3 weeks then come back for gamma knife on a couple of other spots they had seen on the pre-op MRI that were not surgically accessable. Then the pathology came back on the one they removed- all of it was radiation necrosis, no live cells at all. That made me happy- I'm always glad to hear that one of my tumors is dead, but it also meant that they were now questioning whether I really needed another (would be my third) gamma knife, or whether the PD-1 might be getting in there and doing some work.

Under the impression they were going to hold off on the radiation, I was rather surprised when I recieved a phone call saying I had been scheduled for gamma knife. After talking with them, then with the surgeon it was agreed that instead of the radiation I would get an MRI to take a look at things and we'd discuss what things looked like and what the best path would be. 

The MRI happened at about 7:30 am, and the follow up/consult was at 9 am. I am so very very happy to report that the end result of that was that the spots they were concerned about appear less distinct than they did on the pre/post-op MRI so there will be no radiation (for now). Instead we'll re-scan in 6 weeks and see how things look. I'm good with that. I should also note that I was able to resume the now FDA approved PD-1 locally last Friday, so I'm really not even off schedule with that. 

Regarding the surgical site- the cavity is still a bit large, but it is reducing in size and the incision on my scalp looks quite good so everyone is happy.

Best of luck to everyone out there who's fighting their own battles- keep fighting, it's worth it!

-Eva

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