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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Brigitte's picture
Replies 6
Last reply 8/18/2014 - 8:30pm

Hi. Last week I had a conservative excision to remove the rest of a atypical  mole.  I got the patholgy report back and I was wondering if the margins are all clear? 

 

Diagnosis: Surgical Changes

Gross Discriptin: Received in formation, labeled "right mid upper back", is a 2.8 x1.2 cm elliptical excision specimen of gray-tan skin and subcutaneous tissue. The specimen is inked, serially sectioned and submitted entirely in four cassettes.

microscope decription: sections show surgical changes without residual nevomelanocytic proliferation. 

 

I go back in a week to get the stiches. out. Whats next? 

 

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miky85's picture
Replies 1
Last reply 8/18/2014 - 5:11pm
Replies by: tcell

Hi, I just started to read this forum recently. 

My father has started his terrible journey in Sept 2011 when they found out a melanoma in his thigh. That was already stage 3, not sure about the specification. After different treatments and surgery to remove linphs he has got satellite melanoma all over the leg. Obviously, the leg became bigger and bigger during the period. 

From January 2013 to November 2013 he has been part of the sperimentation of a new drug, the project was callend PRAME. We did not see any relevant benefit and that's the reason he left for starting Yervoy, in January 2014.

In the process of going from local melanoma to satellites they moved him from stage 3 to 4, and that was right during the PRAME therapy. In our country Yervoy is given just to stage 4 patients.

He has been able to have the first three sessions and then, in April 2014, just went down. He collapsed being in and out from hospital with infections, inflammations, pain. Doctors told us was a reaction and probably an intoxication from Yervoy. Recently, just a month ago he was again in hospital with very high fever, nausea, diaorrhea, confusion.

Doctors told us that he is in a terminally ill stage where they are not able to do any prediction. His blood has a very high LDH value and the forecast is to have blood cancer and perhaps mets on linphs and brain. He is literally under palliatives and he is not eating, so skinny and pallid. Most of the day just sleeps and his voice his so low and innocent, like his behaviour, since he is not clearly aware of the situation. He cannot have TC or radio because he is too weak, at least they say.

I am feeling so bad, do not know what to do and what to think. I am very confused because everything went so fast and now I am stuck with this situation. What do you think? Do you have any experience at all with this particular aspect of illness?

Thank you all...

  

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ABELL's picture
Replies 9
Last reply 8/18/2014 - 4:10pm

My best friends story:

 

Stage IV 52 year old woman.

Doctor gave her 6mo-1yr survival.

Had Cyberknife on brain tumors.

Had radiation on Spine.

All treatments done winth-in the last 3 weeks.

Tumors in lung, liver, lymph nodes & some bone.

Since she has brain tumors, there are not a lot of clinical trials out there. Her Kaiser Oncologist is going to refer her to UCSF for a second opinion/evaluation/possible clinical trials.

 

Ipilimumab will start on 8/26.

Any success with this treatment? What should our expectations be with this drug?

What side effects, if any, have any of you had or having?

Could this lead to NED?

 

Any insight would be appreciated!

~Amanda

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2014 - 4:08pm
Replies by: lou2, Anonymous

FDA approved this year.  Supposed to detect melanoma without biopsy.  Anyone had this used on them?  Only can be done by derms, not patients by themselves.

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pigs_sty's picture
Replies 6
Last reply 8/18/2014 - 2:24pm

Hi,

I'm just looking for future options for my wife. Stage 4, BRAF +ve, failed Vem and has now started on Ipi (2nd infusion) so fortunately we have PD1 and possibly TIL to try if Ipi fails. I'm just looking for things I can reasearch in to for the future. So far I have read about:

Anti LAG3

Anti GITR

Anti KIR

Can anyone help with other possible treatments to reasearch? Many thanks

 

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Hi all,

It's been a week + since I underwent two 3 series Cyberknife treatments on 2 brain mets. I have been exhausted ever since. Have you experienced same? Is this normal or am I just depressed that the targeted immunotherapy I'm on (Mek/Taf) isn't getting up in to my brain? Curious about others' experiences after radio surgery to the brain.

PS- so glad I found this forum where people understand what I'm going through and my language doesn't sound like Swahili! Thank you!

Best,

kali

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Candi13's picture
Replies 23
Last reply 8/18/2014 - 10:47am

Hi,

I am posting my good news to share information on the Merck PD-1 trial.

I started this trial on 12/20/11. After only 3 infusions, I could see 2 subq's on my leg and chest start shrinking.

Last week, I had my first 12 week scans since starting to take this drug. My doctor told me that there was NO CANCER
anywhere in my body.

Starting the trial, I had tumors in my leg, on my chest and BOTH lungs. Being stage 4, this is truly a miracle after
only taking this drug for 12 weeks. My doctor told me, I am a “complete responder”.

I know of 2 other patients who started this trial in December 2011 with me. One patient with lung mets is a complete
responder. The other patient is a partial responder.

For those interested in this trial, here is the link:
http://clinicaltrials.gov/ct2/show/NCT01295827

I know that there are openings for this trial at UCLA Medical Center with Dr. Ribas. His email ARibas@mednet.ucla.edu

Good Luck to Everyone fighting Mel.

Candi

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Nicole35's picture
Replies 3
Last reply 8/18/2014 - 12:35am
Replies by: Nicole35, Janner

I am new here so Id like to say hello! I was diagnosed with Melanoma In Situ on 8/6/14, had my WLE on 8/13.. Now I am waiting for those results. In the mean time I have been reading my original path report and noticed some things of concern. First off, my mole, which was flat, small mis shaped, was taken with a shave biopsy and that came back in situ, can In situ truly be diangnoses with just a shave? Or is it more of AT LEAST In Situ? Also path report says things like with in Epidermis there are nested and single melanocytes growing in a lentiginous and confluent growth pattern, the lesion closely approaches a lateral margin and there is pagetoid scatter of melanocytes to higher levels of the dermis.  I hate this waiting game, and am concerned that with a shave biopsy in situ is just the only depth it could be staged at.  im aware of how dangerous Melanoma can be, my aunt had a WLE with no further treatment and 10 years later out of no where had stage 4 melanoma in her lungs. I want to see a melanoma specialist to be on the safe side, but any and all info anyone here could give is very much appreciated. Melanoma is a beast and we are all fighters. Thank you so much! And God bless!

ps. I also have several dysplastic nevi

 

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dvd's picture
Replies 1
Last reply 8/16/2014 - 10:47pm
Replies by: BrianP

This showed up on my Facebook this  AM - just have to share it with those who find the setting familiar...

http://sfglo.be/QC

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michaelinsocal's picture
Replies 8
Last reply 8/16/2014 - 4:27pm
Replies by: kalisama, ecc26, michaelinsocal, Anonymous, Ginger8888

Hi everyone. I registered and became apart of this community earlier this year after being diagnosed at stage IIIA. Just thought if drop in and post an update. I also have a question I'll ask below.

So far I had the melanoma removed from the outer part of my left ankle last December (2013). Skin graphed the area 2 weeks later and had lymph nodes removed out of my left groin as the SNB found micro mets. The surgery to remove the nodes (10) was back in Feb and all ten nodes came back wnegative, along with a Jan pet scan that showed NED. After all that the only option given to me was interferon so I opted to do the 12 months. I was only able to tolerate the high dosage for three out of the four weeks. The Dr came me a two week break and now I'm on my third month of once a week shots. My weeks are up and down but I've listened to the wonderful advice here and opted to do my shots Sundays, just before bed so I can sleep most of the side effects off.  The two most common things I've noticed is the lack of energy and I tend to develope a lot of mucus.

My question for all of you is if you have ever been directed to drink Alkaline water. Ive done some research and there are many claims that alkaline water contains cancer fighting properties. 

For those who have tried it, could you pass on your recommendations. 

Thanks for reading.

mike

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ABELL's picture
Replies 16
Last reply 8/16/2014 - 12:59pm

Hello,

My best friend, co-worker, second mother, all of the above has been diagnosed with Stage IV. First diagsosis was about 8 years ago, removed melanoma on neck, no radiation needed.

Recurrence happened in 11/13. Same spot on neck, this time it had spread to some lymph nodes. They removed the tumor, some muscle, partial thyroidectomy & some lymph nodes.

After surgery and radiation, PET scan showed NED.

6 month PET scan was scheduled for 7/26- day after my wedding. She went to scan appointment and was scheduled to hear the results by the next tuesday.

Monday night after work, she said she didn't feel well. Nauseous. She had a seizure about 9:30pm and was rushed to emergency.

They did a CT scan (she hit her head, needed stiched and had slight concussion).

The melanoma had metastasized to her brain, 2 tumors in her frontal lobe, her spine, liver and lung.

IN 6 MONTHS!?!?!

They are doing radiation to her spine, Cyberknife to her brain & I believe biochemotherepy for her liver & lung. She is on steriods & anti-anxiety meds. They told her she has a year.

Anyone familiar with this? I have been obsessed with the internet finding horrible stories & statistics. NO CURE, POOR QUALITY OF LIFE, LIFE EXPECTANCYS OF 2-4 MONTHS!!!!!

Life is upside down, how do you get past the gloom and doom & look for a light at the end of the tunnel for her?

Any stories, suggestions & help would be appreciated. Thank you!

~A

 

 

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Mat's picture
Replies 17
Last reply 8/16/2014 - 2:50am

One year ago today, I started on the GSK combo (Tafinlar & Mekinist) as my initial treatment following Stage IV diagnosis.  Just a few days prior, I had been rejected by the NIH for their TIL trial because I wouldn't survive it--heavy and aggressive tumor burden.  The clear implication was that if the BRAFi didn't work, I was toast.  That ride home from Bethesda was the longest few hours of my life.  My mind was racing.  The guilt of ruining the lives of my wife and kids (then 4 and 2 months), the regret of not having acted sooner on that mole taking a odd shape ten years before, the fear of disability and death.  I'm not sure which was worse--my tumor burden or the psychological burden!  

In any case, at that point, while I was relatively asymptomatic just a few weeks prior, I was fatigued, had little use of my lower left arm as a result of a bone tumor and had just been diagnosed with a brain met.  So, I started on the GSK combo, had the bone tumor in my arm radiated and celebrated my 40th birthday having a gamma knife procedure for the brain met.  Below is my initial post on MPIP just a week or so after starting the GSK combo.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

The GSK combo worked quickly--miracle drugs in my case.  They reduced my tumor burden dramatically and gave me my (new, melanoma-altered) life back.  (The radiation for my bone tumor and gamma knife worked too.)  In addition to the GSK combo, I've since taken my shot with ipi.  I'm probably not a responder.  My scans have been stable since ipi and I continue with the combo.  Although I'm far from NED (I still have 12 or so tumors in my liver), I feel fine--really well actually.  I lead a normal (melanoma-altered) life.  I work full-time, spend time with my family, run errands, go to sporting events, concerts, etc.

I'm certainly not one of those "cancer is a gift" people, but in some ways, this year has been one of the best years of my life.  Cancer makes everything so much more urgent and vivid.  I'm grateful for having had another year of watching my kids grow, of being with my wife, of being here for the simple things, like the change of the seasons, a great cup of coffee, etc.  I'm grateful for another year of work, of helping people, of feeling productive.  And, I'm grateful for feeling relativley well for most of this year.

I'm keenly aware that I'm now on the right of the median of progression-free survival on the GSK combo.  So, I try not to take anything for granted.  I read your posts (thanks for those--I continue to learn so much from you) and I continue to work on Plans B, C, etc.  And, I continue to enjoy my time.

Best, Mat

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robbier's picture
Replies 2
Last reply 8/16/2014 - 2:21am
Replies by: Jubes, AnitaLoree

I changed oncologist because I felt like I was in a waiting game with my old one.  Well now with the new one, same old waiting game.  I hate the waiting game.  My last appointment was July 24t.  This ws after a pet scan on July 23rd of 2014.  To make a long story short, I am diagnosied with Metastatic melanoma now.  The scan showed a abnormal finding in the right femur near the mid right of h eleg, suppected in the marrow.  then a supped area in the left public area.  My doctor wanted me to have a bone scan come back and see him then talk treatment.  I called fffffffmy new doctors office for two weeks.  To find out someone scheduled this test inOctober of 2014.  I told them no, I need this test asap. Not October.  so I go tomorrow for bone scan back to my new Doctor July 21th.  I will tell him if he dones't want to treat me, please send me to someone that at least I will fell like I  am the number one person at that point in time.  My insides are screaming, had a two day crying thing.  (Maybe it was a pity party).  I am just tired of being on the socalled back burner, and the wait and see appraoch when I have been told Ihave stage 4 melanoma cancer.  So far I have had no treatment. ''

 

The waiting on doctors is the pits.  How in thew orld does anyone get through the wiaitng on doctors without falling apart.  I failed apart waiting.  Arg!!!!  Thanks for letting me sound off.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Rocco's picture
Replies 10
Last reply 8/16/2014 - 2:00am

August 11th is my anniversary of being diagnosed.  Just completed 9 years of this journey - all at Stage IV. Thankfully NED since 2009.  Posting this only to give others hope.

Hang in there!

Rocco

IV since 2005, NED since 2009, Ipi responder 

Luke 1:37

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2014 - 1:42am
Replies by: Jubes, Anonymous, Janner

Hello, I am new to the community and am hoping someone will be able to share some insight. I noticed a brown spot on the bottom of my foot last Friday afternoon. It was in a hard to see place on my right foot just beneath my pinky toe and I was immediately concerned. I've been trying not to consult Dr. Google but the little I read is freaking me out. I am 6 months postpartum with my second child and have been experiencing anxiety as it is. I know worrying isn't going to help or change the outcome but I can't help it. I'm trying very hard to be positive but I also want to be realistic. So I called and got in for a last minute appointment with the dermatologist last Friday and she biopsied it right away. It looks like she cut around it and scooped it out. She told me the results will take 2-3 weeks but I have a follow up scheduled for a week from this Friday which will be 2 weeks after the biopsy. I don't think it passed the ABCD's. Any thoughts on this? TIA

 

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