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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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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MelanomaMike's picture
Replies 44
Last reply 9/23/2018 - 7:55pm

Well, deep breath, as i was typing to you all right now this morning, like i do every morning, my Oncologist calls in to tell me my scan revealed Not So Good News, right lower lobe (Lung) tumor has increased now to 5.2cm and basically all the otherones have not vashished but not grown either, the one on the right (the 5.2 one) is the strong BASTARD of the group..DAMNIT! she said my treatment will be postponed today & shes sending me back out to Kaiser Riverside to see their specialist to talk again..comon' now! Somethings gotta give here, time is moving fast!...gunna go sulk for a few minutes, ill be back later, ill head over to pick up my CT Report later, i guess they cant Email it only Fax & i dont have a machine...love ya guys..Mike

Im Melanoma and my host is Mike..

www.covvha.net

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I've had eleven skin cancer primary sites: four melanoma, four squamous and three basal, all different body parts ... but the melanoma on my forearm, which looked like a cafe au lait birthmark, has returned. The staining began reappearing two years ago, in the same place and odd shape as the original, despite its having been completely removed by repeated Mohs surgeries five years ago...I go every four months for a skin checkup with the dermatologist, and when he finds something he biopsies it, and if positive ssend me on to the sin surgeon.  The surgeon told me today that he has never, in twenty years of practice, seen a cancer that had been successfully removed by repeated Mohs, reoccur in the same place and style. I am totally worn down by the repetition of skin cancers at new sites, and now to know that they can come back after Mohs has really lowered my confidence and strength. Your thoughts?

Terry

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Anonymous's picture
Replies 3
Last reply 9/22/2018 - 1:56pm

Hi all - my mother was diagnosed in August with having stage 4 melanoma. It has spread to her brain, liver, spinal cord and lung - took us completely by surprise.

As there were multiple tumours in the brain (>10) and due to their positions on the brain, the doctors decided WBRT would be the first step forward. 

We were told the next step most likely would be immunotherapy but we should wait for the biopsy results. When the biopsy results came back it was found that she has the BRAF mutation (not sure which one) and the doctors wanted to start us on the BRAF/MEK targeted therapy instead.

I was unsure about us switching to the targeted therapy when we had immunotherapy lined up but the doctor explained that it was a better option at this point in time since :

a) my mother is still on very high doses of cortisone which affects immunotherapy negatively

b) targeted therapy acts faster compared to immunotherapy in the cases they have seen and my mother's case calls for immediate results

c) the WBRT has most likely damaged the blood-brain barrier and the BRAF drugs would make their way there with greater success

We were going to start the treatment last Monday but the weekend leading to that my mother had a brain haemorrhage. Noone would agree to operate on her due to the risk, her being on blood thinner drugs and the extent of the damage. Miraculously, she seems to be slowly recovering, talking again, still in bed of course, with control of her limbs and she has started eating normally again. The doctors believe she is now stable and the haemorrage has most likely stopped as she is getting better each day. No CT scan to confirm this yet.

The doctors have said we should start the targeted therapy as soon as possible : Dabrafenib but only that one alone as a) the Trametinib drug has not yet arrived and b) Trametinib causes higher instances of haemorraghic events. 

I understand that this is an incredibly difficult situation but I have been reading great things about these treatments. I haven't read anything about stage iv people with multiple sites of metastasis though.

My questions to you are - in your experience :

a) Does dafrabenib/ trametinib work well for people with many sites?

b) Have you or anyone you know started on dafrabenib and then added on trametinib a while later?

c) Is it worth me buying Trametinib privately than waiting for it to arrive? Worried that doctors are not giving trametinib because it hasn't arrived, not because it causes bleeding events.

d) When do we start seeing results of the targeted therapy - how do you guys check that it is working?

e) Should I ask the doctor that we switch to immunotherapy and cut down on cortisone to do this?

f) Really scared about what WBRT is going to do long term - when do you usually start seeing effects?

g) Should I push the doctors to find the primary location of the melanoma? It is non-melanotic (i.e. has no dye) so it's not easy to find but i can get a dermatologist to do what they need to do if it is necessary.

I keep telling myself my mother can get to an NED state if I everything works as expected and I'm not giving up hope.

Thanks for taking the time to read this - I have read plenty of the posts here. You are all going through a massive I wish for courage to you and your carers as well. Have a nice weekend everyone!

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Savymoo23's picture
Replies 10
Last reply 9/22/2018 - 1:10pm

Here is my lab results:

 

Study Result
Impression
1. No discrete evidence of metastatic disease.
2. Cystic abnormality associated with the left ovary. Consider further evaluation with pelvic ultrasound.

Narrative
HISTORY: Malignant melanoma of torso excluding breast (HCC).

COMPARISON: None.

TECHNIQUE: 100 mL Isovue 300 was administered IV. Postcontrast CT images were obtained of the chest, abdomen, and pelvis. Automated exposure control was used. DICOM format image data have been securely sent to the Idaho Health Data Exchange (IHDE) and
are available to nonaffiliated external healthcare facilities or entities on a secure, media free, reciprocally searchable basis with patient authorization for at least 12-months following the study. For more information visit http://www.idahohde.org

FINDINGS:
Thoracic Inlet: Normal.

Chest Wall: Postoperative changes of the right axilla. Postoperative changes noted in the right back.

Heart/Pericardium: Normal.

Great Vessels: Normal.

Mediastinum/Hila: Normal.

Lungs/Pleura: Clear. Airways are normal. No pleural effusion.

Liver: Normal.

Biliary: Normal.

Pancreas: Normal.

Spleen: Normal.

Adrenals: Normal.

Kidneys/Ureters: Normal.

Bowel/Mesentery: No obstruction is present. No wall thickening or pericolonic inflammatory stranding. No mesenteric mass. There is no free intraperitoneal air. Normal appendix.

Vasculature: Normal.

Lymphatics: Normal.

Pelvic Organs: Left ovarian cyst measuring 3.7 cm in diameter.

Bladder: Normal.

Musculoskeletal: Age associated degenerative changes. Postoperative changes of the right back.

Savannah Price

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MelanomaMike's picture
Replies 8
Last reply 9/22/2018 - 1:30pm

Hi guys, hope yer all doing well & in good spirits, yep, Opdivo #6 is fixin' to go down tomorrow assuming my oncologist "Doesn't" deem it unnecessary, im due to get results from CT scan last Monday so, im not scheduled to see her actually, just straight shot into the Juice Bar (infusion room) shes on the same floor so, im sure we'll see eachother!
Boy, we sure have alotta new folks poppin up here at MRF, since im off work for the time being (SSDI) Ive taken on the role as Gate Keeper/Butler etc. greeting these folks especially if no one has replied back to them, for not everyone is off work or retired etc...
Anywho, ill keep ya all posted after tommorrow..love ya guys..Mike!

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Ridingaroundwith27Jennifers's picture
Replies 12
Last reply 9/22/2018 - 12:17pm

Hi All,

I have my routine brain MRI scheduled for Monday.  I've started calling it "Brain Day".  I schedule my neuro appointments after the scan and take the day out of work.  I try not to stress and bring a good book and just hang out on Fenwood and Francis streets and then bounce over to good old Brookline Ave.  My boss has started rejecting my vacation days for Brain Day and just let's me take the day.

For those of you in the midst of the darkness remember there is light.  Things get better.  You heal.  You persevere.  You survive.  Chin up if you can.  Use humor.  Draw strength from others.  

Good wishes to you,

Jennifer

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Hi Everyone,

I posted a while ago about my daughter's pathology report (she is 11) and wanted to give an update and had a few questions. 

She had 2 moles removed and originally one of them came back as a combined mole with features of a spitz nevus and features of a halo (she did not have a halo around the mole it just showed inflammation on pathology) so we were sent to a pediatric specialist. Thankfully the local children's hospital opened a Melanoma and nevus clinic last fall. Her dermatologist was great and requested to get the original slides to have their dermatopathologist look at them since she said they have had kids sent there with a melanoma diagnosis that ended up not being melanoma and vice versa and wanted to wait to see what they said before deciding what to do. It seemed like an eternity but after a few weeks her Dr called and said their pathologist didn't see spitz like the other pathologists but that they saw a combined nevus with clonal or inverted type a along with the halo features even though she did not have an actual halo. She said she did not need to go back in and do a WLE but she would need to follow up more often and see her again in 6 months so we were very thankful for that! 

The mole was removed by shave biopsy just over 8 weeks ago and it is still painful to touch (we thought it was just the healing process) and unlike the one removed on her leg it is now raised, even more than the original mole was. She also has a much smaller mole that is close to where the original mole was that she was complaining was also hurting/itching and it was slightly pink on one side of that mole. We only had them look at the original mole because she kept saying it was itchy and bothering her. It doesn't look infected or anything but I called her dermatologist this week and they want her to come back in next week to look at it but I just wanted to see if this is common and just part of the healing process or if anyone else has experience something like this? I was also wondering if anyone has any information about the difference between a combined nevus with spitz and one with clonal/inverted type a. We were told spitz looks similar to melanoma so do clonal/inverted type a also look like melanoma? Thanks!!

Pathology info:

Combined melanocytic nevus with focal epithelioid cells and features of a ‘halo’ nevus note: The features are compatible with a so-called “clonal nevus” or “inverted type A nevus” The epithelioid component has been regarded by some to represent a superficial variant of deep penetrating nevus.

Microscopic: There are nests, cords and strands of small, monomorphous melanocytes within the dermis where there are also focal nests of larger epithelioid melanocytes that have abundant cytoplasms containing fine, dusty melanin and rare admixed melanophages. There is also a dense lymphocytic inflammatory infiltrate within the dermis that focally obscures the melanocytes. A panel of immunostains was provided for review. BAP-1 expression is retained throughout the lesion, which is a 
normal finding. The remainder of the stains are non-contributory.

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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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daveofduncan's picture
Replies 3
Last reply 9/20/2018 - 1:37pm

Hey folks.

I'm new here. I'm currently on holiday over in the states. I was getting upset about sunburn I developed yesterday. Spoke to my gf back home and she directed me here.

The issue is, I've been mega paranoid about the sun since my diagnosis in late '15 and op early' 16. I've been on two other holidays, benidorm and hawaii (both in 2017) there was no major issues there thankfully. But I forgot to put lotion on yesterday and ended up standing in the sun for over 1hr 30 yesterday afternoon. I was waiting on my nfl team finishing practice here in Charlotte,NC.

Well after getting back to my friend's house. I've developed this massive red mark of sunburn on my right bicep/tricep area. It's the worst sunburn I've had for quite some time. Left arm seems to have dimmed and cooled down, as has my neck (initial melanoma area) but my right arm is still hot and red. I've been use aloe Vera gel since.

I fly back to Scotland tomorrow and I'm feeling so paranoid about it developing into something much worse.

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Spl25's picture
Replies 3
Last reply 9/20/2018 - 9:12pm

Has anyone else experienced pain in areas where tumors used to be? Did you do anything about it?

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LordKelvyn's picture
Replies 8
Last reply 9/21/2018 - 4:35pm

Five years ago I was diagnosed with stage IIIA melanoma and after surgery I did a year of interferon, which was the only game in town then. Recently my melanoma has re-presented and after surgery my oncologist has recommended nivolumab as immunotherapy.

The literature says that nivolumab isn't anywhere near as toxic/debilitating as interferon, but I'm wondering if there's anybody here that has done both and can give me an objective opinion on the differences...

Thanks

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Belltown's picture
Replies 11
Last reply 9/22/2018 - 1:21pm

Found this board many months ago and have found it incredibly helpful.  This is my first post.  

My younger brother, age 57, has Stage IV Melanoma and has been on oral targeted therapy (dabrafenib and trametinib) for 10 months (since November 2017.)   His oncologist just told him today that he wants to switch him to ipilimumab and nivolumab via I.V. infusions.  I have done enough reading to have a good sense of what this means and why, but I can't find anything that indicates the interval between stopping the oral regimen and starting the I.V. regimen.   Does anyone have a sense of what that could be?  Thank you.

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Anonymous's picture
Replies 5
Last reply 9/20/2018 - 1:14pm

Hi,

 

I'm 22 yrs old and I recently noticed a small nodule near my neck. 

I took an appointment with a dermatologist as soon as I've seen it. 

It's there for about 1 month and a half, but at first I didn't research on it because it came from a pre-existing mole and the mole was just getting a bit bigger. so I thought it was normal...

Now there's a small nudule (1,5mm).

I have a biopsy next wednesday and i'm stressed out.

I know that it's not a good idea to look on the internet, but it says that most of Nodular melanoma are already in a advence stage when you can see it or touch it...

I'll wait for results... Hopefully it's not deep and I can cure it.

Anyone have stories on a nodular melanoma? 

Is there a lot of chance I survive ? 

I'm scared.

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Bubbles's picture
Replies 14
Last reply 9/21/2018 - 6:05pm

I will never be able to fully express what your outpouring of support has meant to me over these past weeks.  You have all been a light in my darkness.  Your messages on the board, my blog and via email have warmed my soul, brought sweet tears, and made me laugh.  These are no small things!  I have also been enjoying a beautiful bouquet!  While I am unsure where to direct my thanks specifically, it has been a lovely treat.

MPIP is indeed a special place because of each of us!!  Yes, just as in families and the best communities, we each have our own special niche.  It often falls to Janner to help coax the newly diagnosed down from their perch with grace and patience, simultaneously walking them through their path report with skill.  I have seen many more of you stepping up here as well.  Yes, I have long been the resource for "data explained", researched "one more option" for my dear Stage IV peeps in need, and certainly pursued my various soap boxes over the years....

+ YES!  Immunotherapy works in the brain!!!!!!!!!!!!!!
+ YES!  People deserve anti-PD-1 even though ipi is available!
+ Adjuvant care is real and valuable and needed!!!
+YES! YES!  YES!  Radiation and immunotherapy work better together and therefore can and SHOULD be administered together!
+ YES!!!  You can and SHOULD treat side effects of immunotherapy, even with steroids if needed.
+ Immunotherapy takes time.  Be patient with the patient.

You've heard them all!  Over and over and over!!!!  But, the good news is ~ I almost don't have to say them anymore!!!  In the beginning, when the world was new and there was no treatment for melanoma (anytime before 2011!!!!) and the years immediately following, it was a battle to get local oncs to provide access to the care we gradually had coming on line!  But thanks to all of you....we've come a long way baby!!!

As to researching help for those in need...there is no one who can find the right expert, talking about the right thing, at the right time and HOOK YOU UP!!!!..better than our dear Edster!  He may be only a mouse, but he is a keeper!!!  Eric W is a researcher extraordinaire and has become a force to be reckoned with in parsing trial exclusion criteria.  Partially due to their own travails, Brain P, Bill, Mat, Gary, and many others have become excellent advocates and experts at outside the box treatments...TIL, immunotherapy combo's...sharing what they've learned with skill.  I think we all need to work to make sure that intralesionals (like PV-10) are employed when they are an option, given the data and responses like those of Texmelanomex!!  (Yes, I know.  I'm still pushing!)

Mark_DC, Niki (Cancersnewnormal), Susan (Casagrayson), Sabklyn, and so many others give out thorough, intelligent caring advice daily.  Julie (Julie in SoCal) {Who has damn sure been through more than her fair share!!!!!} and Jenn (Jennunicorn) do the same with some good intell for those seeking adjuvant care.  We are truly blessed to have saints among us ~ Rob (Adriana Cooper) and Maria (maperny) ~ still here for us, holding us up in spite of their own great personal losses.  And while all voices and hugs come through the internet (Just like those t cells in the brain!!!!  I'm telling you!!!) some like those of Scooby and Melanomamike shoo the darkness from every corner!!!!

And, since there is no Camelot, we do need our deputies who keep our world productive and supportive.  Perhaps, because he is a mouse, The Edster can smell at rat at 20 paces!!!!  And while we love and admire ratties, folks here to cause strife, mislead, sell us "REAL LIVE COUNTERFEIT" - are not welcome.  Mike, Beth, NSNewf, and many others have proven their dedication in keeping this board a helpful, caring, and safe place.  You can bet that any number of our peeps will be ready to answer any newly arrived crackpot, touting, "When you imbibe only blue M&M's, taken three at a time, the third Wednesday of the month, just as the sun sets below a lone cloud...your melanoma will be gone!!!"  ...or any other sometimes more legit sounding shenanigans!!!  I mean to each his own, but we have to protect those still uninformed and desperate among us!  But, y'all don't need me to tell you that!!!

And that's the point isn't it?  Y'all got this!!!!  All of you I noted and the many, many, many other dear peeps I have not (though you are bright in my mind!!!!) ARE MPIP!!!!!  It is just that simple.  YOU are what makes the forum valuable in ever so many ways to ever so many peeps across the globe!! Keep up the good work.  It means more than you will ever know. 

This is not goodbye.  Lord knows, I could be in a rant on the board tomorrow!!!!  You all know I have never been one for secrets.  So, I wanted all of you who had interest to know that I have not dropped off the planet.  I will still be around.  You can always reach me via this board or my blog.  But, I have a long way to go...  And I'm not even sure where I am going.  That doesn't mean I won't get there!!!!  But, it might take me a minute.

You have no idea the kick it has given me to see "melanoma peeps" and "ratties" and "Melanoma sucks great big stinky green hairy wizard balls!!!!" become part of the vernacular!!!!!  I have loved every "Eeeeecccckkk, eeeeecccckkkkk. ", dear John!!!  It has been a rare privilege to be a trusted friend in each of your lives.  Much love always, les
 

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