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.

Expand/ Collapse Topic
 
Replies By
View Topic
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...

 

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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!

Login or register to post replies.

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.  

 

 

Login or register to post replies.

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!!!!

Login or register to post replies.

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.

Login or register to post replies.

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?

 

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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

Login or register to post replies.

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 ?

Login or register to post replies.

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

 

Login or register to post replies.

The WOW first! Because we all need to know that even when it looks like there is a set back things can still work out.

In January of this year my Mom's MRI was still showing all 28 brain tumors that were treated by gamma knife.  This last week she had her 3 month follow up MRI.  Her radiologist only saw the area of her brain where the craniotomy ocurred and one tumor that was treated in August of 2015.

Nothing else was visible! Nothing!

So, either the remaining evidence of the 27 treated tumors is completely gone OR they are now so small that the MRI can't "see" them.

HISTORY

My Mom, 78 year old, was diagnosed with Stage IV in November of 2013. We didn't know it at the time, but she also had 3 brain mets that the radiologist missed!  Lucky for us we saw a second and then a third opinion. The third doctor had his radiologist look at her MRI and they found 3 brain tumors. (Even I knew there was a problem when I saw the screen...) 

My Mom ended up having not 3 on the MRI.  8 of 9 brain mets were gamma knifed in early December of 2013. The radioncologist missed 1 of the 9, but we would not know that until April of 2014. 

She started Yervoy 4 days after the first gamma knife treatment and did really really well. She only did 3 of the 4 infusions and got colitis, but even with that we saw a huge decrease in the subcutaneous tumors.

Unfortunately, we found in accidently (another misdiagnosis!) that my Mom had 17 more brain tumors on top of the ones treated in late 2013. Needless to say it was a bit scary, but we didn't know there were that many. - We had switched all of her care to USC in Los Angles when we were told by a neuroncologist that we need to wait and see how the new tumors progressed before we talked about gamma knife. (Idiot!) - Within 24 hours we saw her new radiologist and we have been thrilled with her care and the results.

A year or so went by and my Mom had great results between the Yervoy and the gamma knife, but did had a reoccurrence that needed to be treated with a craniotomy in June of 2015. We then found out that she had another brain tumor in August of 2015, which was treated with gamma knife. She started Keytruda in September of 2015. - My Mom had few side effects from all the treatment, with the exception of colitis and thrush. She went back to the DMV and retook all of her tests after the gamma knife treatment and has been driving since early 2015... No cognitive issues to report. Thank Goodness!

Can't recommend her doctors or USC in Los Angeles enough. I can't imagine that she would still be alive or have all of her faculties without them.

Login or register to post replies.

Rita and Charles's picture
Replies 9
Last reply 5/10/2016 - 11:28pm

So new scan results, the BRAF/MEK combo is stil working - right tumor shrunk, no new organs affected, left lung mass showing in last PET scan not showing as significant on latest CT, lymph nodes affected still show uptake but no new change......So stable, stay the course.  BUT, the last months in particular the Tafinlar/MEK has affected Charles even more - more nausea, more tatique, a terrible quality of life - always in pain.  But stabel right?

I am going to take a leave from work, Charles is at home and sick each day, sick for the last 9 months....we need a break, a chance to grab a few happy months. So we spoke with oncologist, of course not happy at the thought of stopping treatment.....we tried to lower dose, but still Charles is sick from it...lost 11 more pounds from the end of March to our May appointment.  We went to the islands in April, Charles so sick - he stopped meds after 3 days then spent 6 days enjoying family more.

So we return home, timing is weird as we have to move.......so dream of running away to the islands for 6 months....go off meds, do bucket list.  But of course, no decison is easy.......without meds, will the melanoma monster explode, we come back and then go back to Braf/mek to shrink and then onto immunotherapy?  Is 6 months of happiness worth the risk? We make a decision and then frighten ourselves it's the wrong one.

If we stay here, go right to immunotherapy........no guarantee that will work, side effects, etc.....they grow and then we hope it kicks in.

I hate to bring this topic up as i see so many warriors, go from one thing to the next then the next....and we have only been at this a year.  But we are exhausted........do a few bucket lists knowing the costs may be great? or stay the course, just switch up the therapy......

Where we are going, treatment would not be available.........we are sure, we are not sure.......are we insane?  Will we look back 3 years from now and ask how could we have done this? or in 3 years, could he be worse, and we ask ourselves why in God's name didn't we grab a small window of time to just escape and be happy - then get back on the merry go round.

I don't expect any magic answer...........has anyone out there stopped, gotten off the merry go round, then jumped back on...

Confused, scared.....how do you ever know what the right choice is in this shell game of tumors and lymph nodes, just waiting to kill you.

Rita

Rita

Login or register to post replies.

Pages