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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dvd's picture
Replies 4
Last reply 5/18/2016 - 5:07pm
Replies by: DZnDef, Bubbles, dvd

Even after a couple of years of negative scans and a decreasing frequency of visits to my oncologist, I still stop by this forum every once in a while, just to keep up with what's happening in the melanoma world.It's encouraging to see posts like that from Kim K who are even further out after treatment responses, and nice to read the posts of others checking in, still NED.

In some ways, I feel like I no longer belong to "the group," having had a rapid and complete response of my Stage IV disease with the ipi/nivo combo. I no longer feel like I am a Stage IV patient, even though, technically, I am but with the post script "in remission" on my medical record. 

Several weeks into the clinical trial, when I first allowed myself to recognize the first signs of a reversal of my disease, I wrote a blog entry (http://daveschronicle.blogspot.com/2014/02/melanoma-time-for-stage-5.html) with a tongue-in-cheek suggestion that a new, Stage V category be added to the melanoma lexicon to represent those who have had a complete response to one of the newer therapies. I would like to think that Stage IV is behind me (even maintaining an awareness that recurrence, or a new primary, is still a possibility), and that the aspiration for the future is a natural progression for all Stage IV melanoma patients to a disease-free state of Stage V.

I've always been an optimist...

 

dvd

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Just wanted to rant about how much I hate melanoma right now. My uncle (dad's brother) just had a skin biopsy result come back melanoma in situ. A month before my own diagnosis, my mom's brother had melanoma in situ removed. Another family member (by marriage) just told me she had melanoma in situ removed years ago, right after she had finished chemo for lymphoma. THANK GOODNESS thay all caught theirs early! I can't be more thankful for that. 

My brother just sent me a picture of a big bandage on the back of his scalp from a biopsy he just had done this morning. He's had a few atypical moles removed in the past, I am hopeful that is what this is too... I just can't even go there with the "what if". He's my best friend, my only sibling, my whole damn world. He's dealt with a testicular cancer scare plus, his daughter had a large wilms tumor when she was only a year old, had her whole kidney removed and spent her second year of life doing chemo. Nope, won't take anymore of these cancer bullies in my family... LEAVE US ALONE!

Ok, rant over. 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Richard_K's picture
Replies 2
Last reply 5/14/2016 - 4:48pm
Replies by: jennunicorn, BrianP

Fox 61, the Connecticut Fox affiliate, was at my home for a video with my wife and I.

http://fox61.com/2016/05/10/as-sun-comes-out-a-reminder-to-wear-protecti...

 

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Kim K's picture
Replies 13
Last reply 5/18/2016 - 5:14pm

In one month I will be 6 years stage IV - NED post surgery and IL-2.  Both my oncologists fired me as a client because I was soooooo boring, they had nothing to do.  Basically said, you know where you can find us should any issues arise but we really don't have to see you any more.

This is one of my best graduations yet!  I get to die from heart disease, stroke, or being stupid, or getting killed by "blue ice", or a pack of flying monkyes instead.

I am haning my hat on the long term survivorship of complete responders from IL-2.  We are still setting the survival curve.  Charlie, you better damn well join me you curmudgen...  I miss our hot tub parties with Barth, StanN, Don W, Carole K and the gang.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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plb67's picture
Replies 6
Last reply 5/12/2016 - 12:58pm
Replies by: plb67, Janner, jennunicorn

Hi, I'm a 48 year old female and new to this forum. Just had biopsy done last week of suspicious mole and received report. My dermatologist tells me not to be concerned, need excision, but all is superficial and not to worry-as if that's possible :)

Can anyone help me with deciphering the report and if I should get a second opinion with an oncologist? Dermatologist says no need to go to oncologist. The surgeon I was referred to made me nervous because they say based on report I would only need 3mm to 5mm margin? 

Report says:

Diagnosis: Skin of left posterior shoulder; biopsy consistent with an atypical lentiginous compound nevus associated with basal cell carcinoma of superficial type (see below)

Gross Description:

Received in formalin fixative is a 0.75 x 0.65 x 0.1cm specimen with a pigmented area measuring 0.4 x 0.35cm which appears to go to the margin. The specimen is inked black and bisected for histologic evaluation.

Microscopic Description:

The biopsy specimen revelas acanthosis of the epidermis with junctional nest formation. There is bridging of rete ridges. Increased numbers of melanocytes are evident along the dermal epidermal junction and basaloid tumor with retraction artifact is noted. The histologic findings are consistent with an atypical lentiginous nevus with severe architectural disorder and melanocytic atypia, associated with a basal cell carcinoma of superficial type.

The epidermal changes in some areas are borderline melanoma in situ. Complete excision with careful margin control is advised.

Do I have melanoma-it's not in diagnosis, but in microscopic description? Should I insist larger margins on excision? Should I skip the dermatologist surgeon and go to oncologist? 

Any help would be greatly appreciated. Thank you.

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Hi everyone,

I had a very itchy reddish mole on my rear removed on April 29th. My dermatologist said it looked to be just a bug bite and that we should have results in a week. A week later I heard nothing back, so I called her. She said that it was an Atypical Spitzoid Tumor and they need to send it to San Francisco for further genetic testing to determine what to do next, but we for sure need to have more margins taken out and a lymph node biopsy.

 

She did not have a lot of answers for me, and from the research I did online about these tumors it sounds like they are difficult to diagnose but fairly easy to treat. I just had some questions regarding the treatment process since she didn't really have anything else to tell me.

 

It seems that this sort of thing might be melenoma but isn't as aggressive. Is the biopsy and further excision something that is like a general anesthesia surgery or just something they numb me up for and then take it out. Has anyone that has had these ever needed further work like a PET or CT scan? I've read about blood work and chest xray but why do they need a chest xray? There's not a whole lot of info out there about this, so any info is helpful! 

 

Thanks!

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/13/2016 - 11:28am
Replies by: BrianP, Anonymous, Bubbles, jpg

Thanks for all of the insight on this board.  I am so inspired and amazed by the number of proactive, intelligent individuals posting and fighting here.  Thank you in advance for your time and expertise!  

 

I am currently recovering from a right groin dissection for 3B melanoma, originally diagnosed on my lower back in 2007 as a think uneventful melanoma.  Unfortunately it came back.    Still have my little drain friend and am looking forward to losing that next week.  ; )  I am considering clinical trials and recently a melanoma specialist surgical oncologist has presented that in his opinion I need a dissection of my deeper nodes. That was not done by my surgeon.  I had only 7 nodes in my groin and 1/7 was positive for melanoma.  The original surgeon has indicated that he feels that not to be necessary at this time as nothing showed on the PET and only one node was positive and other nodes were clean.   Evidently the deeper nodes can be dissected using robotic surgery and it is much less invasive than in the past. Evidently there is a 15% chance of melanoma in the deeper nodes.  I am unsure about proceeding with the additional surgery.   Can anyone advise?  Are the deeper nodes a standard of care?  I have also heard mixed replies in regards to lymphadema, etc. assoc with deeper node dissection.  

 

Thanks for sharing your expertise.  Getting conflicting opinions and feeling overwhelmed by the weight of these decisions.  

 

 

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JoshF's picture
Replies 11
Last reply 5/13/2016 - 11:05am

So blood test came back positive for HLA-A2 which got me an appt at Loyola to discuss the Adoptive Immunotheraphy Trial. I was under impression that it was TIL but apparently it's different. Anyone really know key differences? The trial investigator explained that T Cells come out of blood vs. tumor. I have some other questions I'm waiting for a response for but please chime in. My current oncologist thinks this is great option and can show promising results. I'd just like to know that since it's not TIL, do they remove tumor? Is there chemo involved? All questions I guess that will be answered next Thursday.

In the meantime, I've been considering looking at some of the things that Celeste, Ed and Gary have thrown out there. Trying to sort everything out in my head, get through each day while holding onto hope. I know there's many out there who have been in a bad place and are still here doing well. I just want to be there with you...it's what I want for all of us. Blessings to you all!!!

Josh

 

 

Let's work for better treatments....for a cure!!!!

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Nell's picture
Replies 5
Last reply 5/12/2016 - 6:55pm

Had my 3rd infusion of Keytruda today.  Blood tests show my thyroid is beginning to act adversely to the treatment. Both tests show it is overactive which has never been a problem before. . Dr. said this will be watched carefully. Can this result in permanent problems? Dr. said I may need thyroid meds.....Do you sometimes have to stop Keytruda because of this?If someone can enlighten me about keytruda and the thyroid I would really appreciate it. Today has been a bit unsettling as I was hopeful I could avoid side effects since I have had to stop both Yervoy and Tafinlar/mek before.........Plus! My melanoma specialist is leaving and accepting a new position elsewhere.....I have been feeling really positive for awhile but tonight I am kind of bummed.......Thanks for the help!

One voice can make a song; one life can change the world.

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Has anyone developed lymphedema NOT caused as a result of surgery and/or chem/radiation?

 

Is Lymphedema an indicator of cancer in the absence of surgery and/or chemo/radiation?

 

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DZnDef's picture
Replies 6
Last reply 5/18/2016 - 5:53pm

I just found this site today as my sister invited me to participate in a "fun run" they are sponsoring.  I know most of you have probably already noticed it.  I am posting it here because it is the easiest site to navigate about melanoma that I have yet seen.  It looks like the survival data is out of date (2009 - pre Yervoy, Keytruda, Opdivo), but it still told me worthwhile information about my own Stage IV disease.  Please let me know if this site has been discredited somehow.  It looks pretty legit to me (but what do I know).

I am linking directly to the Stage IV page (because that's where I'm at) but the previous page lists all the stages.  Also looks like a pretty up-to-date list of melanoma specialists (I say that because my own specialist is listed at his new location).

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iv-melanoma/

Maggie - Stage IV (lung mets unknown primary) since July 2012

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karinaaa's picture
Replies 5
Last reply 5/13/2016 - 10:35pm

Diagnosed with melanoma in 2015, interferon knocked out my liver (enzymes up past 1200 after a week on high dose, should be 300 max) and I received no further treatment. An ultrasound for an unrelated issue revealed that one of my ovaries is looking worn out and my reproductive system looks "normal for a premenopausal woman". Thing is, I'm 21. I'm pretty sure interferon had something to do with this since I've been having some subtle-but-new signs of something hormonal going on post-chemo, and I can't think of anything else to explain this. High doses can induce menopause after all, and after everything my liver went through, it's conceivable that its ability to break down and remove excess estrogen was impaired, which led to estrogen buildup and ovarian damage (among other symptoms I actually noticed before the ultrasound, that could be attributed to high estrogen levels). So... am I completely off track here? Think it's possible?

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maryb-z's picture
Replies 4
Last reply 5/10/2016 - 9:11pm
Replies by: maryb-z, jamieth29, jenny22

I connectected with Jamie here, through email amd texting. I haven't received any resposne from him lately and haven't seen any posts from him. Has anyone heard? I know he consulted with Bubbles (Celeste) a lot. Thanks. Just concerned.

No One Fights Alone

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knittingirl's picture
Replies 1
Last reply 5/10/2016 - 9:42am
Replies by: Anonymous

I was diagnosed stage 3b in September 2015 ( lymph node in my left groin). I have been treated then at UCSF. First I had a  ipi/nivo combo but had to stop after the 3rd infusion due to severe colitis that lasted 1 month and a half. I had a scan beginning of February and was declared NED. I went through surgery in March for a CLND of left groin and the pathology confirmed the scan: no cancerous cell. I was so happy !

I had an other scan last week and my manubrium and pubis bone show a SUV of 9.5 and 8 . Oncologist wants me to get an MRI this Friday.  Is there any other explanation ( except cancer) that could explain this high level of SUV ? I am confused as I thought that my immune system would still be active 5 months after the last infusion of ipi/nivo.

Is there anyone who went through ipi/nivo and see his tumor disapeared and few months later got a recurrence ?

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sister of patient's picture
Replies 14
Last reply 5/15/2016 - 12:49am

Hi all - Just reporting in case it's of any benefit to anyone else.

My sister just had a 2nd infusion last Thursday. Woke up Friday with tinnitus and it's progressed today to where she couldn't even stand to listen to one of her favourite CDs (Adele - the undulations really made it go wacky!!) - said it was like her whole ear was starting to vibrate.

Read all I could find on here this aft about tinnitus and she is calling her onc. But of course it's all scary - maybe just really bad congestion in her sinuses, maybe pituitary gland affected and cortisol levels falling, maybe brain mets (she was clear before but that brain scan was 4 mos. ago).

Otherwise, tolerating 2nd infusion really well and starting to feel way better. After first infusion, she was ill for two weeks and then felt better but visit with onc prior to 2nd found she should've been on a drug that they took her off several months ago when she went on Taf/Mek (something for stomach acid - a common drug that ulcer patients take). As it's way better, we're hoping the stomach med was the "missing piece" of the puzzle.

Update, she called onc - nurse isn't concerned about the tinnitus at all BUT they are concerned because her vision has been steadily deteriorating for weeks. They knew that last week and now, all of a sudden, they seemed to be concerned??? Geez!!

I am making inquiries about how to get a 2nd opinion - we're here in ON, Canada though - not easy!!!

Best thoughts, always, for all on here!!!! 

Barb

 

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