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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Ridingaroundwith27Jennifers's picture
Replies 1
Last reply 9/25/2018 - 9:00am
Replies by: Coragirl

Although not the relaxing day I had hoped for the MRI looks good.  Nothing new and for the most part the radiation site is stable.  There is some increasing evidence of radiation necrosis which aligns with not having feeling back in my foot but it's not tumor regrowth so I can't complain.

Why wasn't my day as good as I had hoped?  Just having a little trouble juggling all the balls at the moment and Boston traffic is insane.  

Good wishes to you all,

Jennifer

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MelanomaMike's picture
Replies 9
Last reply 9/25/2018 - 7:06am

Ill have to type it out myself, for i dont know how you guys "link" it or whatever, here it goes!

The visualized portions of skull base:Unremarkable, visualized orbits are within normal limits..
There is moderate paranasal sinus mucosal disease wich has mildly worsened. Nasopharynx oropharynx, hypopharynx and larynx are remarkable.
Mildly prominent bilateral neck lymph nodes are not significantly changed.
The parotid and submadibular glands are within normal limits.
Thyroid gland in unremarkable.
The osseous structures of neck demonstrate degenerative changes of the spine.
The heart & great vessels demonstrate calcification consistent with atherosclerotic vascular disease.
Prominent to enlarged mediastinal and hilar Lymphnodes have all mildly increased in size. The largest Lymphnode is a subcarinal Lymphnode which has increased in size from 12mm to 14mm.
The posterior right lower lobe lung mass has increased in size from 2.2CM to 5.2cm (from last scan in May 2018!! Booo!) A previously seen left lower lobe lung nodule has "Decreased" in size ftom 2.5cm to o.9cm (yaaay!!). Other scattered small subcentimeter nodular densities are not significantly changed (Yaaay!). Liver has no focal lesion or biliary duct dilatation.
Gallblader is unremarkable
Spleen is normal.
Pancreas is without focal lesions.
Adrenal glands unremarkable.
A small renal cyst is again seen. No stones are identified. There is no hydronephrosis.
Bowel demonstrates no evidence of obstruction.
Pelvis, Bladder, unremarkable.
Prostate within normal size.
The osseous structures demonstrate degenerative changes of the spine.
Ok! And the end it reads "Impression" wich is everything i wrote anyways just condensed it seems, i shoulda just copied that haha..
My last CT Scan was 4/24/18 in comparison...

Im Melanoma and my host is Mike..

www.covvha.net

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Raco's picture
Replies 3
Last reply 9/25/2018 - 6:13am
Replies by: dessie, Raco, mandyjill

I have not posted any updates in a while, because life happens.
I am official at my half way mark for Opdivo treatments. ( #13 )  Whoop Whoop. (Treatments every two weeks)  26 total
So far the treatment side effects have been on and off, upset stomach, nausea, heavy breathing, rash spots, aching bone / muscles and Fatigue.
The fatigue has been bad at times, but I have been working full time and between my wife and I take care of our two special needs daughters Olivia 20 and Chelsea 24. So this sure does not help with the Fatigue.
So as I mentioned, I am now ½ way through my 26 treatments, so far, I have  had two Brain MRI and one PET scan.  My second PET is this coming Wed. 9/26.
Right now, my worst symptoms are Fatigue, Rash Spots all over, and bone/muscle pain.
But it beats the alternative. GOD is good.

 

 

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Momofjake's picture
Replies 14
Last reply 9/24/2018 - 10:35pm

Okay!! 

Hi there:) I just want to post some happy stuff even though we are in the hard place. This board just makes all the difference. I am the quiet reader most of the time and Jake is pretty private so I try to respect that. 

But the odds of Jake from Utah and Brian P from North Carolina being in California and meeting for a visit are just too slim to be a coincidence. Jakes first talk with anyone really. Brian was great and Jake got motivated!! He is ready to start a trial with Dr Hamid in LA and seeing if he is eligible for Brian’s trial in Houston! Brian helped get the doctor on board. 

The wreched beast has made its way to Jakes heart, brain, bladder, bowels, bones, muscles....but Jake is okay:) He feels pretty good despite the SRS, terrible biopsy through his entire torso yesterday and the constant travel. We got this. 

Many thoughts and prayers...that means you Celeste! The board changes lives. It’s changed ours. We got this!!

With gratitude for you all here, truly, 

Kerri

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/24/2018 - 10:31pm

I have not posted any updates in a while so here it is... I am official 10 treatments in (treatments every two weeks) So far the treatment side effects have been pretty mild. I have lost the thyroid which was no surprise since my doctor had warned me that is was a possibility. The fatigue has been overwhelming at times but I have been working full time and still full time momming to a 6 & 9 year old. So for those that have asked if it is possible to keep working and keep doing the thing you love to do the answer is a big YES!! Some days you may need that extra nap or bed at 7pm but you can do it!! I have now had my second set of scans since starting Nivo and last scans showed NO cancer!! I have really had to take a deep breath and process that....I guess because I know how tricky this cancer can be. But today I am going to enjoy every moment....the best lesson I have learned in this journey!! I still have 8 months of treatment ahead of me but so thankful for treatment options. I lost my grandfather to melanoma 24 years ago and I know how lucky we are now to have all these treatment options. 

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aldrichdesigner's picture
Replies 15
Last reply 9/24/2018 - 10:05pm

Think we could all use this boost from time to time to understand just what's possible these days. All survivors please respond but I'm selfishly interested in the stage 4 numbers ...

I'm going on 1.5 years since being diagnosed stage 4 and another 9 before that when they found the primary. So I'm already at 10.5 years since my very first positive biopsy. Currently stable and on keytruda and really hoping to get another 10.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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estelle's picture
Replies 1
Last reply 9/24/2018 - 9:39pm
Replies by: Janner

I am 71 years old and have just been diagnosed with my first melanoma. I've had a basal and a squamous cell cancer removed in the past (due to lots of sun damage in my early years), but this is the first time I've been told I have a melanoma. It's a small spot on my thigh -- one of umpteen on my legs and arms -- that my previous dermatologist has passed over for who knows how many years. But I changed dermatologists and my new one thought it looked suspicious (even though to my eye it looked just like all the others), had it biopsied and it came back as Stage 0, in situ melanoma. It took two weeks for the biopsy report to come back and now I face a dilemma because I have a trip-of-a-lifetime cruise to Antarctica (OMG -- think hole in the ozone!!!) planned for the end of October, and there is barely any time to have the surgery needed to remove the melanoma with wide margins, and to have stitches removed before we leave. I have no idea how big an incision this will end of being or how long it will take to heal. The surgeon I saw on Friday said it could wait until we get back from our trip, but that won't be until the end of November. Dare I put this off for two more months? As of now, the surgery is scheduled for December 4. Am I risking having a Stage 0 tumor turn into something more dire and invasive? I am also terrified that I have more of these melanomas that have gone undiagnosed due to the inattention of my previous dermatologist. Where does one find a dermatologist to give me a really thorough exam, given my history, and how in the heck do I personally keep track of 20 or 30 different spots that might or might not be changing in tiny increments from month to month? The more I read about this, the more terrified I become.

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jessica_f's picture
Replies 7
Last reply 9/24/2018 - 9:34pm

Hi everyone,

I don't usually post, I'm more of a reader but I've run into an issue with my scan results. I'm a stage IV patient, dx initially in 2001 as a stage III. I had lung mets in 2015 which were resected and I followed up with 3 ipi infusions (never made it through my fourth as I developed colitis).

I've beeen NED since Jan 16 but went to my onc last week with some troubling issues - confusion, problems with my short-term memory, numbness in both arms from my elbow down into my pinky and ring fingers. I have back pain all the way from my mid-back down to my lumbar region and my body twitches on occasion. 

My onc sent me to the ER to get an MRI because it would be the fastest way to get results. The good news is that my brain looks fine. The bad news is that my spine has multiple lesions (looks like at least 6). My oncologist doesn't think that the lesions are melanoma - she's suggesting congenital or trauma. But I'm a little leery of her conclusion. From 2013 to 2015 we watched my metastatic lung nodes grow slowly, during which time she was convinced that they were benign granulomas.

I really love my onc and have been with her for nearly 20 years; she has the best bedside manner of anyone in the business. But her strategy is to be non-alarmist and I fear that she's holding back on me until we have further evidence of growth. I had a CT of my chest, abdomen and pelvis last week and all was clear. I'm at NYU and thinking of getting a second opinion at Sloan re: my spine; any thoughts from the board would be appreciated.

Best,

Jessica

Study Result

IMPRESSION:

Slight interval increase in size of an enhancing, sclerotic subcentimeter lesion within the T1 vertebral body, suspicious for metastatic disease.
Additional 5 mm T7 superior endplate enhancing lesion, not definitively seen on the prior study, suspicious for metastasis.
Additional small enhancing lesions within L1 and L3 vertebrae may represent additional foci of metastatic disease.
Multiple other indeterminate vertebral body lesions as described above.
No evidence of cord compression or epidural extension of neoplasm.
Narrative
Clinical history: Metastatic melanoma, presenting with right upper extremity radiculopathy and 2-4 weeks of confusion

Technique: MRI examination of the entire spine was performed prior to and following administration of 5 cc Gadavist intravenous contrast.

Comparison: MRI of the cervicothoracic spine from 12/9/2015. Comparison is made to multiple CT examinations of the chest, most recent from 7/13/2017

Findings:
Alignment throughout the cervical, thoracic and lumbar spine is maintained without evidence of listhesis. Vertebral body heights are preserved without evidence of acute compression deformity.

There is a 9 x 8 mm homogeneously T1 hypointense, heterogeneously T2/STIR hyperintense, predominantly peripherally enhancing lesion within the T1 vertebral body. This lesion appears sclerotic on multiple prior chest CTs. Compared to the prior MRI given differences in technique, it appears slightly larger, previously measuring possibly 6 x 5 mm.

There is additionally a 5 mm T1 hypointense, T2/STIR hyperintense enhancing lesion within the T7 superior endplate. It was not definitely seen on the prior examination.

There is redemonstration of a T1/T2 hypointense, well-circumscribed sclerotic lesion within the left aspect of the C7 vertebral body, unchanged from prior examinations, and likely representative of a bone island. No associated enhancement is seen.

Unchanged from the prior MRI is a nonspecific 7 mm STIR hyperintense lesion within the right facet of T2.

There is an indeterminate, peripherally STIR hyperintense/enhancing lesion within the right T4 facet is noted.

There is a 7 mm T1 hypointense, STIR hyperintense enhancing lesion within the L1 vertebral body. Additional questionable STIR hyperintense, possibly enhancing lesion measuring 6 mm within the L3 vertebral body.

Evaluation of the cervical spine demonstrates no significant disc herniation, cord compression or neural foraminal narrowing.

There are scattered mild degenerative changes throughout the thoracic spine. Visualized on sagittal images only, there is a right central disc herniation at T7-8 which appears to contact the ventral cord, with mild resultant canal stenosis.

Evaluation of the lumbar spine on sagittal images demonstrates no large disc herniation, significant canal or neural foraminal stenosis.

There is no signal abnormality identified within the spinal cord. No abnormal cord or intrathecal enhancement is seen. The conus medullaris terminates at the superior L2 level and is unremarkable in appearance.

DX Stage III, 2001, WAE + lymph node excision; 1 year interferon high/low dose...Stage IV, 2015, lung resection, 6 months Yervoy; currently NED

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/24/2018 - 8:29pm
Replies by: Toby0987, Raco

Can you still get a PET Scan with you have a head cold?

Someone told me that with a cold, your lymph nodes in your neck can get inlarged whitch will  show

activity in the Scan. 

TRUE or FALSE

Thanks All for your help

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Olytown's picture
Replies 6
Last reply 9/24/2018 - 7:48pm

I'm a stage III melanoma survivor and following surgery 2 years ago, I have had good body and CT scans. I used to be very active outdoors : running, hiking, kayaking, swimming, body surfing, etc.  I've become afraid to even go from the house to the car to go to the store. I do follow the advice of my oncologist to choose outdoor activities during times that my shadow is longer than me. I cover up with UPF clothing more than relying on sunscreen and I even wear UPF gloves.  I have become somewhat outdoor-phobic though, and it is limiting my previously active lifestyle. Sometimes I get depressed about it. When does it feel safe to be outside again? I have turned down some fun invitations due to fear. 

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Dave61184's picture
Replies 5
Last reply 9/24/2018 - 7:36pm

Hello everyone prayers for all.  As I stated in previous post I was diagnosed with stage 1a and had it removed this past July. The individual that did my wle was a dermatologist that was specialist in Mohs Surgery he seem very confident and said after this wle I’m good. At that time I was worried and rushed into the wle and didn’t even do any research. I’m now  doing research and others people told me that I should have gotten a melanoma specialist/melanoma oncologist first and reviewed it with them and had them remove it. Now I feel that I made a bad decision. I’m now seaking an oncologist/melanoma specialist to review everything. Now I’m just worried that I did this in July it is to late and it won’t benefit me cause I don’t know what they can do.  I want to be proactive and don’t want it to spread. Has anyone just had a dermatologist do the  Wle? Thanks again everyone.

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MelanomaMike's picture
Replies 12
Last reply 9/24/2018 - 7:35pm
Replies by: lkb, Edwin, BillB, iskitwo, MelanomaMike, SABKLYN, ed williams, Anonymous

Hi family, alotta you know Whats up with me currently (3 diff Immunol meds arnt working for me), my question is, is it safe to say that trying Chemo meds like Interferon, Interleukin, Proleukin and other types not a even worth trying? Is that like going backwards? Im gathering that those meds have very little success with our desease compared to the Pembro, Ipilimumab & Nivolumab that iv done already...just curious! Please share..thanx!

Im Melanoma and my host is Mike..

www.covvha.net

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JHolcomb's picture
Replies 6
Last reply 9/24/2018 - 12:33pm

Hello, I am newly diagnosed with what is being called Spitzoid type Melanoma. I am currently awaiting Wide Excision surgery and Sentinal Node Biopsy. I am curious if someone can help put the Pathology report into Lehman's terms. I understand the staging, depth and clarks, but beyond that, can't wrap my head around the seriousness, if any. Can someone help? I had two biopsies performed, the first is listed first.

Malignant melanoma, spitzoid type.
Breslow measurement: At least 1.1 millimeters.
Clark's level: IV.
Surface ulceration: Absent.
Precursor lesion: Not identified.
Regression: Not identified.
Lymphocytic response: Nonbrisk.
Mitotic index: 1/mm 2.
Lymphovascular channel involvement: Not identified.
Neurotropism: Not identified.
Satellite lesions: Not identified.
Margins: Tumor extends to the deep and lateral margins.
Tumor staging: At least pT2aNxMx.
See comment.

COMMENTS:

This case was sent for consultation to Dr. Pedram Gerami at North Western Medical Group Department of Dermatology. His additional comments are as follows:

''The sections show a markedly atypical spitzoid melanocytic neoplasm. There is high grade nuclear atypia, notable pleomorphism and lack of maturation. FISH studies showed chromosomal copy number gains in 6p25 and 11q13 in greater than 50% of enumerated cells consistent with a diagnosis of Spitzoid melanoma. Homozygous deletions at 9p21 were not identified.
FISH evaluation using probes for Cyclin D1, RREB1, MYB and CEP6 were performed. These probes are approved as analytic specific reagents. In our laboratory, this probe set performed with a sensitivity of 86.7% and specificity of 95.4% in distinguishing benign nevi from melanoma. Thirty cells were enumerated. Less than 55% of cells showed relative gain of RREB1 but greater than 30% of cells show absolute gain of RREB1. The average MYB per CEP6 loss is less than 40%. Greater than 38% of cells had gain in Cyclin D1. The average nuclear signals for CEP6 was less than 2.5. We also performed FISH targeting 9p21 and CEP9 and there is no evidence of homozygous deletions.''

END OF CONSULTANT'S NOTE

CLINICAL INFORMATION

CLINICAL HISTORY:
Preoperative Diagnosis: A. ICD: D48.9 NUB, Nevus, R/O atypia. B. ICD: D48.9 NUB, Nevus, R/O atypia.
Postoperative Diagnosis:
Symptoms/Radiologic Findings:
Procedure:

MICROSCOPIC EXAMINATION:

A. There are uniform clusters of benign appearing nevus cells in the dermis. A junctional component is not appreciated.

B. Sections show a spitzoid melanocytic proliferation confined to the dermis. The overlying epidermis shows acanthosis. The melanocytes have an epithelioid morphology with scattered pleomorphic cells. To better evaluate this lesion, the following immunohistochemical stains are performed and compared to appropriate stained controls: Melan-A/Ki-67 dual stain, HMB-45, P16. The Melan-A/Ki-67 dual stain demonstrates an intradermal proliferation of epithelioid cells with a slight increase in the proliferation index. The HMB-45 demonstrates variable staining. The P16 demonstrates loss of p16 in areas.

Malignant melanoma, spitzoid type.
Breslow measurement: At least 2.5 millimeters, focally transected at the base.
Clark's level: At least IV, focally transected at the base.
Surface ulceration: Absent.
Precursor lesion: Not identified.
Regression: Not identified.
Lymphocytic response: Non-brisk.
Mitotic index: Less than one per square millimeter.
Lymphovascular channel involvement: Not identified.
Neurotropism: Not identified.
Satellite lesions: Not identified.
Margins: Tumor extends to the deep margin.
Tumor staging: At least pT3aNX.

CLINICAL INFORMATION

CLINICAL HISTORY:

Preoperative Diagnosis: ICD Code: D48.9 NUB. Biopsy proven spitzoid melanoma reshave for micro staging.

MICROSCOPIC EXAMINATION:

Sections show a markedly atypical spitzoid melanocytic neoplasm confined to the dermis. The lesion shows variable cellularity with frequent pleomorphic cells and multinucleated cells. The melanocytes fail to mature with decent into the dermis. The lesion is transected at the deep margin through the deep reticular dermis.

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mike_nj's picture
Replies 9
Last reply 9/24/2018 - 12:00pm

Greetings

Just wanted to stop in and say hello.  Name is Mike from near Princeton NJ and turned stage 3B back in 2004 after a stage 1A diagnosis back in 1999.  Working as a chemical engineer and hope to retire next year.

Went to high school with George R R Martin who wrote Game of Thrones.  We were in the chess club back then but he was no match for me!

So far all is still well with me since then after axilla dissection, radiation, and clinical trial back at UPMC with peptide vaccine called Mel43.

Back when I progressed to stage 3B, the mpip chat room was a literal life saver.  Every evening, after work, I got to know many of my colleagues with this disease and we supported each other every night as we chatted about everything, melanoma related or otherwise.  Not sure where the chat went, but it was really dynamic back then.

Some of us did OK and others were not so fortunate and I was thinking about a few members earlier today.  I recall a brave woman form the UK named Imo, who joined us in chat frequently,  and I remember her last post "Off I go", as she was traveling somewhere to get treatment and that was her last post.  There were many others though that beat the odds. 

Wishing all the new patients and those battling this for a while the best and hope you all well.

Mike K

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Raeofsonshine's picture
Replies 10
Last reply 9/24/2018 - 11:34am

Hi there!
Any thoughts from anyone with the same sort of history would be so greatly appreciated.  Had 2 rounds of Ipi/ Nivo late last year.  Due to a plethora of problems - as we have all faced on treatment- we stopped infusions.  Last treatment was 12/2017.  Scans in May showed great response- in transit mets in leg - 7 or more- had shrunk or disappeared completely.  Fast forward to scans in August and I have 2 new growths in the leg, confirmed with a core biopsy- active mel.  For real?  BRAF neg so looks like the only option I get right now is TVEC.  This is only because my doc does not want to pull enough tumor together for the TIL trail and still leave plenty in my leg for monitoring.  I asked if I could just "wait and see if it continues to grow" and he does not want me to wait.  Thoughts from those that have had the TVEC injection?  Should I be getting a 2nd opinion?  My doc is at University of Colorado Melanoma Clinic so I know I'm not dealing with someone that isn't abreast of current options and information. 
Thank you all and I hope you all have a great weekend and stay strong!
Ann

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