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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penelope10's picture
Replies 2
Last reply 10/16/2014 - 5:54pm
Replies by: penelope10, Anonymous

I am a 36 year old male with a family history of malignant melanoma.  Since I was 17, I have seen a dermatologist and have had five excisional/shave biopsies that have all been benign. Over the last 19 years, I have been active duty in the US Navy and have moved 8 times. Because of this, I have never had continuity of care and seen a plethora of dermatologists. No pictures have ever been taken of my many moles, and it has usually been up to me or my wife to notice any changes. In September,  a CT scan noticed a 1cm non calcified nodule in my left lung and my radiologist ordered a PET/CT which I had yesterday.  Good news was the pulmonary nodule showed no hypermetabolic activity. But the scan noted the following..."There are multiple foci of increased hypermetabolic activity with associated dermal tissue thickening on CT images: right back at the level of T7 with max SUV of 5.6, right back at the level of L1 with max SUV of 2.9, left back at the level of T11 with max SUV of 2.6, bilateral upper flank regions with max SUV of 2.2 on the right and 1.1 on the left, right upper medial thigh with max SUV of 4.6. Recommend clinical correlatiom. Differential include infectious/inflammatory process, however, cannot exclude malignancy." I have normal looking moles at all of these locations. I am not asking your opinion on whether I have melanoma or not. My dermatologist will do that when I see him in two weeks. Until I see him, I was just curious if anyone on the forum has received their initial indication of melanoma via PET/CT which led to unsuspecting moles to be biopsied? Any recommendations for questions to ask my dermatologist with the above test results? Thanks in advance!

 

 

 

 

 

 

 

 

 

 

 

 

 

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Roncole11's picture
Replies 6
Last reply 10/16/2014 - 5:04pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

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DMU's picture
Replies 3
Last reply 10/16/2014 - 2:22pm
Replies by: Anonymous, DMU

Someone wanted to know the diagnosis.

0.1mm Breslow thickness, Clark level 2, present at lateral edges

has anyone had a similar  melanoma? If so I would like to know how yours turned out after surgery.       Thanks

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tschmith's picture
Replies 10
Last reply 10/16/2014 - 12:29pm

Yesterday I finally got my first set of scan results since beginning Keytruda in July.  My tumors are shrinking! A soft tissue mass has disappeared. Some lymph nodes have gotten larger but I was told that this is common with immunotherapy and that they will hopefully shrink as well. No new mets. Got my info in a phone call so I haven't actually seen the radiologist's report yet.  My back tends to bother me in the L2 area where Melanoma fractured my vertebra, but there doesn't appear to be any changes. (Had surgery and now have 2 rods/6 screws.)  It doesn't hurt but gets stiff and tires easily. We discussed getting more physical therapy and some other options.

So...Keytruda is working and I'll get my next infusion on the 21st.  

smiley  That happy face kind of looks like me because my eyelashes and eyebrows have turned white since my third infusion.  :))))

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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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DMU's picture
Replies 0

I had surgery on 10/15/2014. Have stitches across entire lower back, took about an hour or so.  Surgeon said as long as biopsy and all other tests come back fine I will be ok.

Pain is not as bad as I thought it would be. I keep going from hot to very cold. Tired

Hope all this information I have posted helps others who may be scared and have them be able to see hope for a long and healthy future.

:)

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JerryfromFauq's picture
Replies 1
Last reply 10/15/2014 - 9:13pm
Replies by: Happy_girl

My Wayne declared Victory over Melanoma through his faith in Jesus Christ at 7:46 am this morning ! He is with Jesus now .

 

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

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jualonso's picture
Replies 11
Last reply 10/15/2014 - 4:29pm

Hi to everybody

Finally i have progression with Braf/Mek and we have decided to go through IPI.

Do i need washout period?

Some changes in diet?

Well, all advices are welcome....

Jualonso

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Scientists have found 'breadcrumb trail' molecule that causes melanoma to spread

Apparently there’s a fatty molecule that irresistibly lures skin cancer cells around the body.

http://home.bt.com/news/sciencenews/scientists-have-found-breadcrumb-tra...

Scientific research has identified a type of fatty molecule that can make cancerous melanoma cells unusually aggressive and mobile, allowing it to spread round the body

The researchers have been looking at a fatty molecule known as lysophosphatidic acid (LPA).

Tests on lab cells and mice revealed how melanoma cells start their journey round the body by breaking down a nearby source of LPA.

Once they have depleted their original supply of the molecule, the skin cancer cells move out of their tumour in a bid to find more. They then move from molecule to molecule as if following a breadcrumb trail around the body.

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/15/2014 - 3:14pm
Replies by: JerryfromFauq

IF ANYONE IS AROUDN AND YOU WOULD LIKE TO COME TO CHAT A FEW OF US WILL BE THERE COME VISTI US.  WOULD LOVE TO MEET YOU.  LOOK FORWRD TO SEEING YOU.  

LOVE AND LIGHT

CAROLE K

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Patina's picture
Replies 2
Last reply 10/15/2014 - 7:29am
Replies by: bilben_r, Ginger8888

Hi,

Are there any Yervoy responders who have gotten shingles?  If so, what happened after shingles? i.e. Did you stop responding to Yervoy, respond less or was this just a side effect?

My Mom had a shingles breakout (she has had them before) and there are not a lot of Yervoy patients who have had them.  Wondering if her immune system is under duress and Yervoy may not be working as well as it has, or what...  

Thanks!

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BrianP's picture
Replies 4
Last reply 10/15/2014 - 4:21am
cbs805's picture
Replies 4
Last reply 10/15/2014 - 4:04am

Does anyone know what can be done about this? My husband has been required each time to sign an ABN (Advance Beneficiary Notice that the scans likely won't be covered by Medicare) for his PET/CT scans. Medicare has always paid until this last one. I know there is a limit to how many they will cover so apparently that limit has been met and we now have to pay. Is there a way of appealing this denial and getting it paid by Medicare? Why does Medicare limit the number of PET/CTs a patient can have? What scans do they recommend instead of the 6 month PET CT? Thank you

CBS805

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Shollands's picture
Replies 8
Last reply 10/15/2014 - 2:46am

Hi Everyone

I have my first mole removal coming up and am very nervous!

 

i have been a regular sun bed user with fair skin that burns easily.

Has a new mole appear on my chest but wasn't worried as heard that it is common to develop new moles up till your 30's.

However, in the space of the last few weeks it has evolved, changed colour, got darker and is getting more raised by the day, nothing like any of my other moles.

am very scared at what the outcome may be. 

Any advice you can give would be really appreciated.

Thank you all

 

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KerriM's picture
Replies 1
Last reply 10/14/2014 - 7:13pm
Replies by: Janner

After posting my story and reading others stories can anyone tell me why some patients have a lymph node biopsy at state IIa/b and some don't. I just had a WLE twice to remove it all....now I am nervous that maybe I should have had something else checked. When I was first diagnosed I went to a general surgeon for removal of the mole as I had two negative biopsies so when it came back I was surprised. I now see a surgeon who specialized in Melanoma (Just had three WLE last week). Now I am nervous after reading that maybe I should have had more testing?

 

Also - Does anyone else feel like they don't want to mention any small changes to their derm at their 6 month check ups because they have turned into a pin cushion? I can't believe I even feel this way and don't want to tell him about changes...am I nuts?

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