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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/24/2016 - 2:36pm
Replies by: Anonymous, WithinMySkin

Wondering if anyone has ever had this operation done?  I have stage 4 melanoma and the main area of concern is area on right upper side of maxillary.  Has also spread into sinus cavity.  In a study now, but dr said goal was to shrink tumor enough to have this operation done.  From what I have researched, this procedure is horrifying!!  Any input would be helpful.  Thanks.

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Julie in SoCal's picture
Replies 6
Last reply 8/24/2016 - 11:45am

Dear Friends,

For the last year and a half or so, I've felt like I'm living with my toes over the edge of Stage 3c; one foot in and one foot out of stage 4.  I've had so many small possibly benign things pop up.  As of yesterday's scans, though I'm now both feet in stage 4 as a 13 x 19 mm hotspot was found in my left lung.  I also had another small intransit pop up.  So it seems Pembro is going the way of IPI, only working for so long and then slowly failing.

So what's the plan? The tumor is small, and doesn't seem to be rapidly growing so I have time to research and find a plan that I'm comfortable with. Also, surgery is an option.  The met is in a very resectable place and is not yet big.  Clinical trials are also an option. Rock Star doc has also given me 2 clinical trials to look at: one targeting NY-ESO-1 (ID-LV305-2013-1) and the other targeting JAC-1 (INCB39110-107).

My instincts (and past plan) has been to leave tumors where they are and attack them with something systematic.  My thinking was that once Mel has left the building and traveled all around my body via blood and lymph systems, only a systematic treatment will work.  And Surgery's always an option I can keep in my back pocket.  

So this is how it is.  Is anyone on the NY-ESO or JAC-1 trials?  Has anyone else failed IPI and PD-1 and joined a clinical trial? Which one did you do?  Looking for all advice and options.

I'm grateful for this community and for the support, knowledge and wisdom they share. Thanks, friends.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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PFritz's picture
Replies 6
Last reply 8/24/2016 - 10:59pm

I am a 35 year old mother of two boys and this year my world was rocked my on Spring Break when I received the news that I had Melanoma. It has been a whirlwind since April. I had a T1b due to thickness of .55, Clark III, no ulceration, and mitotic 2 on my left shoulder. I had a melanoma in situ on my left ear. I had two wide excisions and now confused on next steps. Also I am a type 1 diabetic on an insulin pump and a huge family history of cancer (brother passed away from lymphoma and my dad had an ocular melanoma).

After my two wide excisions in May (and multiple other moles removed while under that weren't melanoma just suspicious that dr wanted removed) I've had a few other dermatology follow ups which was just the watch and wait attitude. I'm not that kind of person given history so we are down at MD Anderson right now. Pathology here was completed and they changed me from a mitotic rate of 2 to 3, is this concerning because it freaked me out?! The dr had said it could be because each pathology looks at different slices and also because their pathology is so good at finding outliers.  In my original treatment the dr said no to a Sentinel Node Biopsy due to risk of surgery (was already going to be a 3 hour surgery and being a diabetic for healing) and he didn't see the benefit of it. At MD Anderson the dr said basically he can't do anything for me unless I have the Sentinel Node Biopsy so what are the thoughts on doing this well after the wide excision, with being 1b? Are there pros, cons, thoughts? We are just very confused with some may differing views on treatment and whether this mole or that mole should go in a jar.

Thanks!

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Anonymous's picture
Replies 1
Last reply 8/23/2016 - 6:52am
Replies by: debwray

Interesting final paragraph that could change how remote Dr visits work ... would you like a 2nd opinion from an electronic "trusted advisor" aka Watson? yes, that Watson the compouter that played Jeopardy...

https://www.statnews.com/2016/08/19/ibm-watson-cancer-asia/

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Mikers's picture
Replies 5
Last reply 8/24/2016 - 5:39pm
Replies by: MoiraM, Mikers, debwray

Hello!

I wonder which steroids did you use and how did you tapper them if you have had an endocrinopaty namely pituitary inflammation?

Did you suspend ipi and for how long?

Did you use antibiotics? 

How long did it take to resolve syptoms?

Did you make lumber puncture for proper diagnoses?

Thank you!

My Doc is not an expert in the field and I want to help him )

 

 

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Maureenk1's picture
Replies 3
Last reply 8/23/2016 - 6:29am
Replies by: debwray, Maureenk1

Hi!  I recently had surgery to remove a mole which was stage 2 ulcerated and 4.2mm thick behind my right knee.  I was referred to an oncologist who advised either Pegylated Interferon a-2b for 8 weeks or Interferon a-2b for 4 weeks.

So far I am not seeing the worth of either therapy based on a stage 2 diagnosis and the effects one can incurr.  Has anyone had these therapies for stage 2 melanoma?

If so how has the protacol impacted your daily life?

Thanks,

Maureen

 

 

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Anonymous's picture
Anonymous
Replies 0

Thermolysin is a thermostable neutral metalloproteinase enzyme produced by the Gram-positive bacteria Bacillus thermoproteolyticus. It requires one zinc ion for enzyme activity and four calcium ions for structural stability. Thermolysin specifically catalyzes the hydrolysis of peptide bonds containing hydrophobic amino acids. However thermolysin is also widely used for peptide bond formation through the reverse reaction of hydrolysis. Thermolysin is the most stable member of a family of metalloproteinases produced by various Bacillus species. These enzymes are also termed 'neutral' proteinases or thermolysin-like proteinases (TLPs).

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/22/2016 - 12:23pm
Replies by: debwray, Anonymous

I recently had an entire mole removed (including the roots) recently.  It was severely atypical.  I don't have any other abnormal moles.  It seems that this was the exception. Does this increase my chance of melanoma?  Also, can the severely abnormal cells come back from the same place?  The derm said he took out a very generous margin.  

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Christine.P's picture
Replies 14
Last reply 8/23/2016 - 12:10pm

I finished my 3rd dose of the ipi/nivo combo 2-1/2 weeks ago and for the first week there was no change in my side effects. Then, a week in, I was clobbered - really severe nausea, loss of apetite to the point I can barely eat (I've lost 6 pounds in the last 2 weeks without trying), nearly continual stomach cramps in the diaphragm area, increased fatigue, and increased heartburn. The past couple of days I have noticed that I have been sneezing a lot and have a lot of mucus in my throat (a cold, perhaps?). 

I know that I need to eat and I sometimes feel hungry - until I acutally try to put food in my mouth. Most times I have to choke food down and can only manage about 5-6 bites at a time. I try to stay hydrated, but all beverages (water, juice, vitamin water, ginger ale, etc.) also make me feel like gagging. 

I emailed my doctor the full description so I wouldn't forget anyting or get distracted by quesitons or comments and they called and told me to come in that day (last Monday). So I did. I met with my nurse pracitioner who did not listen to anything I said and offered platitudes like, "Yep. This is what it's like!" and "These don't mean your cancer has spread." Um. Yes, I know that. I am not an idiot. When I told her that I had to choke food down, she told me what to do if I start choking! 

Needless to say, the whole visit was not just a waste of my time and completely disheartening, but I got no help. My 4th dose of the combo is this coming Wednesday and I am terriified of what might happen next. I know lots of other people have way worse sitiuations than I do, but I am mainly fighting this alone. I live in Rhode Island and my family is in Iowa. I have a couple of friends who help when I need them, but for the most part, I am alone. And this is just a lot to deal with alone. 

I guess I don't even now why I posted this. I just didn't want to feel alone, I guess. I know all the advice - chin up! keep fighting! etc., but sometimes an understanding ear is all I really need. So, thanks for listening. And if anyone has any advice for any of these symptoms, I would welcome any and all ideas. I just can't imagine feeling this crappy for multiple months without some kind of help. 

Christine P. 

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GAngel's picture
Replies 6
Last reply 8/22/2016 - 9:22am
Replies by: Jon M, GAngel, SABKLYN, Casitas1

Hello to all! It has been a while since I have posted here although I do check in from time to time to see how everyone is doing. We have been busy with living life and our biggest struggle has been letting go of the fear of recurrence.  Today Rudy had his 4 month check up and PET/CT scan which revealed that he remains NED! For those of you new to this site you can read my profile for details of my husbands melanoma journey. A quick summary is that he was diagnosed in February 2013 with stage 4 nodular malignant melanoma.  Originating from a mole on his lower left leg with metastases to his liver (15+ tumors) and his left groin lymph node. Treatment started with Zelboraf (which was working but he had severe side effects) and then when the Dabrafinib/Mekinist combo became available he started the combo and eventually began an intermittent dosage schedule and by November of 2013 he showed no evidence of disease.  

Rudy took a 6 month break recently from the combo with no return of disease as the scan today reveals! Amazing! I am compelled to share with you that since the first week following his diagnosis he began taking cannabis oil in the recommended amount to cure cancer and remains to this day taking it at a very low dosage.  That is the only medication/treatment that he has steadily taken since being diagnosed.  I know it was a gamble to go off of the combo and his oncologist did not support him doing it but it was something he felt he had to do. I think mainly it was for two reasons the first being a quality of life issue and the second being he wanted to know what role, if any, the oil played in his success at beating melanoma thus far. We realize that there is no science to his study so to speak (most would say only stupidity, lol) but he was told that if he were to stop taking the combo that melanoma would come back immediately and with a vengeance.  Is six months enough time to give it to come back? According to his doctor for most people the answer is yes. Rudy is not like most people according to his oncologist.

I should also note that Rudy's oncologist was very leery of the cannabis oil and its effect on cancer in the beginning of his treatment, however, at every appointment he and I shared information on latest treatments which included cannabis oil and he now advises me that a huge percentage of his patients are taking the oil as additional treatment to conventional treatment.  I believe that one day soon there will be clinical trials being done in all major cancer centers on cannabis oil as a cancer treatment as the positive results of it curing cancer can no longer be denied and his doctor now agrees with that sentiment. Go figure! I have no reason to give false hope to anyone and I just want to give you good information and maybe some hope because it  worked for my husband.  It may not work for everyone but it is worth trying as there are no toxic side effects at all and it can be taken in conjunction with most conventional treatments. My best advice is to be open minded and combine both conventional and alternative treatments along with a fighting spirit, full of hope and lots of love, and most importantly to us is faith in a higher power and knowing that our God is in control of it all.  Good luck to you all on your journey and know that I pray for you all! Blessings!

Gina (wife to Rudy, melanoma warrior winning the battle)

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Capt jack's picture
Replies 5
Last reply 8/23/2016 - 10:02am

Hi everyone, New to site.  Looking for others on keytruda who are NED and made a decision to stop treatments and go with scans every three months.  My main side effect was extreme fatigue and vitilgo. Oncologist wants me to continue treatments into progression, but the fatigue renders me close to useless. There isn't much in the way of patients experiences to help with the decision.

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Alestrada88's picture
Replies 2
Last reply 8/20/2016 - 12:54am
Replies by: kylez, jennunicorn

Anyone here familiar with any melanoma doctors? I'm looking for a second (and maybe third) opinion!

Thanks in advance!!!

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Julie in SoCal's picture
Replies 7
Last reply 8/22/2016 - 6:25pm

Greetings friends!!

It's been awhile since I've posted anything - mostly because nothing had changed.  I was doing Pembro, (I've done 21 bags) and it was working! Up until now, it has taken care of all of the peskey little in-transit buggers.  It was so cool to watch / feel the little suckers melt and go away.  I figured Pembro was winning the mel battle.  But in this past month I've had another in-transit pop up.  So I don't know what to think. Dang Mel! 

I have scans again on Monday.  It's been 6 months since my last scan, so there' s a possibility of change (also a possibility that there's no change- but somehow that's not in the forefront of my mind). I'll talk with my Rock Star Doc and see what he has to say, but waiting and watching and wondering if I've failed another treatment take some active doing.  

So anyway, this is how it is. I appreciate the comfort and wisdom of the community here.  There's nothing like it.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Alestrada88's picture
Replies 11
Last reply 8/23/2016 - 6:56am

Hey everyone, please bare with me here as I'm new to this site and in desperate need for advice! I'm 26 years old and a new mommy and newly diagnosed.

On August 1st, 2016, I was diagnosed with melanoma on my abdomen. My dermatologist told me over the phone and said the surgeon would be seeing me in 2-3 days. Surgeon sees me and said I was a stage 2 melanoma. Then fast forward a week I had a wide local excision of my abdomen and a sentinel node biopsy. In the node biopsy he removed 3 lymph nodes. Yesterday I found out 2 of the lymph nodes were completely negative and one lymph node had EIGHT melanocytes that the pathologist believes to be benign. Now after this information my oncologist stated I was a stage 1b.

howver, he is recommending a right lymph node dissection. Everything that I read said that it is an extensive surgery with a lot of recovery time and potential for lymphedema. My dr said he is 99% sure I do not need the dissection but "doesn't know what else to do". 

Also, he recommends no more kids but to wait at least 3 years if we are going to have anymore children. We wanted 4 babies and this news is hitting myself and my husband very hard.

 

Can an anyone offer any advice, words of encouragement, education, anything?!?!

Please!!

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Jon M's picture
Replies 13
Last reply 8/22/2016 - 6:30pm

Hi my name Jon i was diagnosed on June 24 with stage IIb melanoma on my right leg. I had my wide excesion and a split thickness skin graft along with a SLNB done on August 4. I just recevied my pathology report yesterday and my margins are clear in my leg but the SLNB came back with cancer in it. So now i think this makes me stage III. I go back to the surgeon on Monday to talk about my options. From what i have read i dont know if i want to go through with a CLND. Some studies now say that it doesn't improve overal survival rate so my thoughts are why put myself through it. I am going to discuss treatment options with my surgeon and i have an appointment with an oncologist. I would like to know who has not done a CLND and what treatment they went with?

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