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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Girl52's picture
Replies 5
Last reply 10/17/2014 - 2:23pm
Replies by: Bubbles, Girl52, Ed Williams

Have more questions as family awaits brother-in-law's results. I am a writer/reporter by profession so always have loads of detailed questions....thanks for your patience.

*Have read that WLE of a metastatic lesion or recurrent tumor has different guidelines than does excision of a primary/first-time tumor. Does anyone know what is done differently? Different margins, some different analysis of tissue?

*Why is in-transit metastasis defined as "late-stage disease" if it is regional and non-nodal, as I've read? Wouldn't surgery to remove tumor and adjacent lymphatic vessels be curative? Or, as in other scenarios, is the danger that other regional lymphatic vessels have been affected and are left behind in the surgery?    

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

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BrianP's picture
Replies 1
Last reply 10/17/2014 - 2:04pm
Replies by: Brent Morris

No specific mention of melanoma in this article but seems like it would be applicable.  Hopefully something like this will prove beneficial in combination with the already existing immunotherapies.

http://medicalxpress.com/news/2014-10-human-cancer-prognosis-newly-immune.html

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Anonymous's picture
Anonymous
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

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Girl52's picture
Replies 5
Last reply 10/17/2014 - 9:48am
Replies by: Janner, Linny, Girl52

My BIL had WLE and SLNB yesterday of tumor just above his left elbow. Surgeon said second path opinion concurred with first, with diagnosis of metastatic melanoma. But recent PET scan clear. Primary might be regressed skin tumor, surgeon said, and "I won't be surprised to find cancerous nodes, and won't be surprised not to." They'll also check for in-transit metastasis. When results available, I hope surgeon offers staging information and recommendation to see oncologist, as BIL has resisted finding out anything about melanoma or consulting an oncologist.

BIL, in his mid-50s, already has a stent in renal artery; high blood pressure; and atrial fibrillation. In fact, surgical team yesterday noticed the a-fib during procedure and asked if BIL was seeing cardiologist. He isn't. Does an underlying cardiac or other health issue make possible systemic treatment trickier, or harder to tolerate?

I have read that, with metastatic melanoma diagnosis but clear scans -- and with or without node involvement -- some patients take a watch and wait approach. But do many decide on adjuvant therapy?

What are chances that BIL's elbow lesion was the only metastasis from unknown primary....that there are no micrometastasis elsewhere that might be nipped in bud with adjuvant treatment?

 

 

 

 

 

 

 

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

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Patina's picture
Replies 4
Last reply 10/16/2014 - 9:18pm

More good news to share...

My Mom, who is stage IV with 25 brain mets treated, had her 7 & 6 month checkup after her her last treatments with ipi and gamma knife radiation. - No CT scans. Just MRI scans for her brain.

Everything is really going well. There are no new lesions and the brain mets are stable. Still no known cognitive issues or anything else to report. If things remain the same at her next MRI she will be cleared to drive some time in December. - 1 year and one day after her first treatment.

Keep your fingers crossed that these results hold. She can't wait to drive again. - Everything else is excellent.

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JerryfromFauq's picture
Replies 1
Last reply 10/16/2014 - 6:59pm
Replies by: Julie in SoCal

I will be late for tonights chat.  We were planning on chatting at 8 pm.  Some others may be here then.  i have to be out until around 9 pm.  Hope to jopin the chatters then.

 

Jerry

 

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

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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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michaelinsocal's picture
Replies 7
Last reply 10/16/2014 - 11:55am
Replies by: Ed Williams, BrianP, Anonymous, Ginger8888, ecc26, mms7angels1

I started my 12 month treatment back in May, 2014. Made it through three of four weeks of IV high dosage, couldn't tolerate more than 3 weeks. Then I took a two week break and started the once a week self shots.

My question is for those who completed the 12 months, at any time did they reduce your dosage based on the side effects? I've had my dosage cut three times during the first 4 months. I'm taking exactly half of the dosage I started out with. My dr reduced based on my blood work and severity (nausea, fever, diarrhea etc) of the side effects.

I'm also interested to know if onterferon worked or failed for you.

Thanks in advance for any feedback.

 

Michael

 

 

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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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