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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LEEPOINTON's picture
Replies 3
Last reply 9/21/2016 - 11:46am
Replies by: ian0502, SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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I know we all insist that your oncologist matters...and it does!!! A specialist in Melanoma stays up-to-date on all the newest information and medications, giving you a greater chance of good outcomes.

But do we focus as much on our surgeons?? All surgeons are NOT created equal. Here's a new study out thats a good guide on what you should look for and what you should ask before surgery to get a better outcome.

http://www.wsj.com/articles/a-new-factor-when-choosing-a-surgeon-1474301023

Always do your homework and keep fighting!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Check this out:  www.shadeitgreen.org

 

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ronald duclos's picture
Replies 34
Last reply 9/20/2016 - 5:52pm

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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Beth606's picture
Replies 10
Last reply 9/20/2016 - 12:19pm

I'm looking for some reassurance or information. I had a thin melanoma removed from my left calf in March of this year. Stage 1a, 0.40, mitotic >1...all the things you want it to be other than Stage 0. Fast forward to the past month. I have had typical drainage from mild seasonal allergies, my ears have a lot of pressure, but then last week I noticed my lymph nodes under my chin are enlarged. i went to my GP who gave me an antibiotic in case it is a bacterial infection. I started the antibiotic on Friday, nodes still swollen. They are soft and movable.

It just so happens my regular 3 month follow up is in a few days, so hopefully I will get more info then. I'm just

I don't know if I'm totally overreacting? At my staging should I logically assume this is a viral or bacterial infection? I hope I'm just concerned for no reason.

 

    

Beth Johnson 

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Amanda's picture
Replies 3
Last reply 9/20/2016 - 5:20am
Replies by: Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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Travis G.'s picture
Replies 5
Last reply 9/20/2016 - 12:19am
Replies by: Anonymous, Aida Ballesteros, debwray, youngann, Gene_S

How can they tell you what Stage you are without the pet/ct scan results? I'm told I'm stage 3 after the SNB. Just wondering. Thanks.

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stevecathy's picture
Replies 6
Last reply 9/19/2016 - 5:42pm

Thinking of a second opinion. My husband is currently seen at ctca in zion. He has been on mek/taf combo for about 8 months . We have had ups and downs with side effects. Now he is having double vision. He has had 4 infusions of yerovoy, but then had Mets in transit so they immediately started combo. Just looking for possible 2nd opinion. We are in central Illinois so st. Louis or Chicago??? Any thoughts would be appreciated. Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2016 - 3:42pm
Replies by: sleepyt23, Anonymous, jamieth29, Ed Williams

I had a slnb then a clnd in nov 2015. I got really sick recently with a bad cold. Sore throat slight fever but now all i have is the congestion with a cough. Wed i noticed a red slightly raised bump 3mm red in color.(painless) What do intransit melanoma looks like. All the melanoma intransit pics look nothing like this tiny red bump. All look black and scattered.Can anyone tell me what intransits look like. Im just praying its a pimple or boil from the bad cold i had. God bless all of you brave people fighting the fight everyday. Anon
btw the mark is above the skin by my clnd

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Nanners10's picture
Replies 2
Last reply 9/19/2016 - 2:22pm

Hi all,

I haven't posted in a while (but I read and follow daily) but am here again seeking thoughts, comments and similar stories.

Brief history:

WLE 2002, progression to groin lymph nodes 2014. Started (Apr 2014) and completed ipi vs interferon trial Apr 2015 (including four maintenance doses), local progression (groin lymph  node) again in Nov 2015. Currently on interferon (no judgement please).

There have been two nodules in my lungs since the first CT scan I had when I recurred in 2014. These nodules started at 7 and 8 mm repectively.  One of them grew to 1.2 cm in Dec 2014. Went in for biopsy to find out that it had shrunk down to its previous size so biopsy was cancelled. Nodules remain relatively stable in size until August 2016. Only one increased in size again (same one) but to approx. 1.4. MRI done the following week and size is measured at 1.2 cm. My doc is now ordering a pet scan since he feels the position of these nodules and their size make them difficult to biopsy. I did have a pet scan in Feb 2016 that noted the nodule at 9mm but not increased FDG uptake. 

Onc says that the radiologist feels they are growing and maybe they had reacted to the ipi when I was first given it but now they are getting bigger (which I don't believe is necessarily true in general but true for the most recent scan). Onc says if pet scan is negative he will have to consult with a lung specialist to see about figuring out what they are and/or having them removed.

Has anyone experienced anything similar or have any thoughts on this? Another thing to add into the mix is that whenever my CT scan is around my menstrual cycle these nodules seem to be affected, crazy hormonal changes maybe?

Thanks in advance for your thoughts.

Nancy

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Joycem's picture
Replies 1
Last reply 9/19/2016 - 1:11pm
Replies by: Julie in SoCal

https://m.youtube.com/watch?feature=youtu.be&v=FZ5CkEajszU

Not new info to the experts on here, but was a nice clear introduction to the topic I thought. Australian Dr., but info is pretty general regardless of locale. 

 

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Patina's picture
Replies 3
Last reply 9/18/2016 - 9:14pm

I read the post from Rob and Adriana about recent developments and noticed that no one had responded to them. Can anyone help them out? They need help.

Can anyone provide them with ideas on where to go for help with travel, finances and maybe a second opinion or larger hospital? - They are in Washington State and she has been diagnosed with Leptomeningeal Carcinomatosis.

I think some help can be received from:

     American Cancer Society

     Angel Flights

I found a possible trial:

     Iodine I 131 Monoclonal Antibody 3F8 in Treating Patients With Central Nervous System Cancer or Leptomeningeal Cancer

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miaka618's picture
Replies 5
Last reply 9/18/2016 - 7:28pm
Replies by: miaka618, MoiraM, Anonymous, SABKLYN

So after I was diagnosed, I found out that skin cancer somewhat ran in my family. Both of my grandfathers had some form of a skin condition that required surgery, but that is the extent of what we know. They are both deceased now so I can't ask them the details and both of my parents were to young at the time to really know anything about it. I am the only other person who has had melanoma in my family up until now.

My aunt noticed that she had some new moles on her arms a couple months ago. She said she wouldn't have thought anything of them if it wasn't for me, which is good. She had them both biopsied and one came back precancerous and the other came back melanoma. I have no idea what any of the details are and she doesn't remember, but she says the doctor said the margins are clear and she shouldn't have to worry about it. OK, good. Well, fast forward to a couple weeks ago and she has new growths near the old site. I told her she needs to get in right away and have them checked out, but she insists on waiting until her next appointment with her primary care physician in a couple weeks and have her refer her back to the dermatologist. I told her she can go straight to the dermatologist without a referral, but she would rather wait. I also found out that her dermatologist is the same one that told me my mole was nothing to worry about. Grrr! I've explained to the best of my ability about how important it is for her to move quickly and to maybe get a second opinion, but she is a stubborn old woman. 

The only thing I can do now is hope that she gets in on time.

April

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adriana cooper's picture
Replies 2
Last reply 9/18/2016 - 2:41pm

and don't keep them waiting on their results (lab, scans, ect.)

 

Adriana has been having various issues for several weeks with pain and numbness in her shoulder, hips and legs but all pelvis, abdomen, chest, brain ct and mri's came back clean, so she was referred to physical therapy for possible pinched nerves?? A couple weeks in, she developed numbness and pain in face and slurred speech. Called in to oncologists office whom ruled out stroke/bells palsy as she still had control of muscles ect. Was referred to neurology, waited 2 weeks with no call back. She called oncologists office again. Neurology was called again, finally she was offered a last minute opening for this last Thursday. Unfortunately I had to miss a portion of the appointment (the part with the Dr.) Adriana's impression was that he was on the more than 50% side that it was cancer cells in her CSF sitting on some of her cranial nerves causing the problems. He ordered a lumbar puncture for Friday which was to be followed by a second if negative results for improved accuracy then followed by MRI of the brain and spine with double contrast. He said he was determined to get to the bottom of her issues as she had similar issues a year and half ago that different neurologist explained as side effects of Ipi (only one (negative) lumbar puncture was done at the time.) Friday's procedure was done by a LPN? As the Dr. was away at a conference for a week+. The procedure went fine although he said there may have been a drop of blood. I commented the fluid was pink or peach colored and it seemed I remembered it was clear the last time. I assumed that was due to blood??He told us as it was Friday no results probably until Tuesday and to call on Wed. if no call. If negative results then second lumbar puncture likely on Thursday or Friday. So after the usual waiting stress over the weekend and beginning of the week, no call on Tuesday.

Now to the meat of things. Wednesday at noon Adriana calls the office and is told the Dr. will have to call her back with the results. No call back by Thursday morning. She calls again and is told results would have to come from Dr. (as if we didn't already know what they were by now) and that Dr. was away at conference and that they had made an appointment for her to see him next Wednesday. She hung up and told me (not in a happy tone I might add) we were going down to get the results from the records department. I suggested I keep control of the cane she now is using lest someone get hurt. On the way down, the office calls to tell her of the future appointment and she tells them that we are on the way down there now to get the lab report. They said they would have it at the desk for her but no one was available to go over it with us. No problem on our part. On our arrival a nurse practitioner (that we worked with on her brain tumor) was made available to see us.

My main point of this post is DOCTORS—We absolutely understand that we are not your only patient and you are very busy and want you to go to conferences to be as knowledgeable as you can be. We also understand that people react differently to news and the preferred method to give and hear it is in person. BUT--- PLEASE DON'T MAKE US WAIT FOR RESULTS. We are not naive to our situation and most people with advanced disease have some education on the subject and that you have likely educated us as to the likely scenarios before the testing was ordered. Most of us know that many radiology reports and lab results (even if preliminary) are available in short order, often within an hour. Leaving us to speculate or worry any longer than necessary as to the results does more harm than good to our well being. A short phone call followed up by an appointment can do wonders for us.

That aside, We were told that firstly one good aspect is that Adriana's MRI's have been clear and any treatments would have a better chance of working. Her CSF was discolored (as I suspected) and did have cancer cells in it. Leptomeningeal Carcinomatosis. In addition to her appointment with the Dr. on Wednesday to discuss treatment options she is scheduled to consult with neurosurgery about possible ommaya implantation. One potential treatment may be intrathecal Depocyt. (haven't found anything about this drug here on MRF (aka Cytarabine) any help. Only chemotherapy was mentioned, no mention of any immunotherapies. I asked if administration of the drug was similar to the treatment offered at MDA in Texas or if treatment similar to their offering was available here it seems as if the nurse practitioner was put off by my question and it seemed that she said we were welcome to investigate what they had there. I took that with a grain of salt at that point as we are now trying to gather as much info as possible.

As you imagine this past week I have been combing through posts on this site, and others as well as the general internet trying to gain information. Although difficult I have tried to have a measured reaction to prognosis and survival information ranging from 4-6 weeks with no treatment to 6-8 months with treatment as well as the the optimistic reports of persons treated at MDA surviving 20 and 10 years to date.

Adriana is on Social Security Disability supplemented by Medicaid here in Washington state and we have very limited income. Please be aware that we are forever grateful for the assistance she is getting and we do not believe she would be alive today with out it. I am unsure if going some where out of the area is feasible financially or even desirable at this time due to her son's schooling.

I have to say that although somewhat prepared for this latest development it does have me quite shaken. Any help, advice, or direction is greatly appreciated. Any advice for additional questions to ask the Dr. are also appreciated.

 

Rob and Adriana

Adriana

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/18/2016 - 2:31am
Replies by: Anonymous, Patrisa, MoiraM

Let me preface this conversation with the acknowledgement that I am likely letting the melanoma anxiety beast get the best of me. But I am worried and if you honestly think I'm being a nut ball please, PLEASE tell me.

I was diagnosed with SMM in july- stage 1a. Shortly after my WLE I started feeling a crackling in my chest and mild cough but assumed it was just me being anxious. It continued but very mild and seemed to be getting better- so I ignored it.

This week I developed pain with swallowing- sharp, sub sternal and the feeling in my chest is coming back intermittently. I know the most likely explanation is gerd/heartburn but it really is mostly when I'm swallowing. I made an appointment to see my pcp next week if it's not improving on prilosec.

The issue is that I really don't want a pet scan, endoscopy, biopsy etc. From what I've read my symptoms are close to those of esophageal cancer but melanoma, let alone early stage melanoma, rarely metastasizes to the esophagus.

Since you all have been around this site a lot longer than I have I was wondering if anyone on hear has heard of mets to the esophagus? I know primary esophageal melanoma happens but a met seems super unlikely, right?.... right?

Thank you!

Alc

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