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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Mat's picture
Replies 16
Last reply 7/29/2015 - 11:27pm

Earlier this week I posted that I thought I was having a weird side effect from Keytruda.  I'm having pain behind my left eye and my vision in that eye is "off".  I went to an eye institute which ruled out inflammation in the eye (e.g., uveitis) and my pituitary panel came back mostly normal.  I moved-up a regularly scheduled brain MRI thinking that maybe I had inflammation of the optic nerve (neuritis)--but it turns out that I have a new 15mm brain met that's pressing on my optic nerve.  My last MRI (which was clear) was on June 1st, so--as we know--things can change quickly.  (I've stressed in earlier posts the importance of Stage IV patients receiving routine brain MRIs.)  I've had 2 brain met previously--one in 2013 and one earlier this year.  Both were smaller and in "better" locations and were treated with gamma-knife.  Based on initial discussions, it sounds like this one may not be a candidate for gamma-knife, but rather a proton beam procedure or surgery.  It's unclear based on these discussions the degree to which my vision will be at risk.  I'll know more on Monday.

Of course, dealing with the brain met is only the first order of business.  I'll also get scanned this week, after having now moved up those scans as well.  My last scans while on Keytruda (at ~14 weeks) on June 1st were stable with some minor reduction.  I have one small lung met (less than 1 cm) and several small liver mets (less than 3cm).  I'm now at ~22 weeks.  A treatment decision is likely coming.  Unfortunately, having done BRAF-MEK, ipi and Keytruda, the next step is not obvious. 

I'll report back as I learn more over the next week.  Thanks.

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DianaD's picture
Replies 10
Last reply 7/29/2015 - 11:18pm

Hello, my name is DianaD.  I'm a 57 year old female, living in Ann Arbor, Michigan.  I have a mole on my back with all of the ABCDE characteristics.  Also, ten years ago, I had moles removed from my chest that were biopsied and that were dysplastic.  And, on the exact site where the current suspicious mole is located, I had two skin tags removed.  Finally, I have an uncle that died from melanoma. 

 

I have an appointment with my primary care physician on Thurs., 7/30/15; he is going to look at the mole and give me a referral to dermatology at the University of Michigan Healthcare Center at that time.  I've already sent my physician photographs of the mole, along with my history, and he agrees that the mole is worrisome.  

I'm glad that I found this forum. 

Thank you, 

 

DianaD

DianaD

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DianaD's picture
Replies 6
Last reply 7/29/2015 - 2:53pm

I have two separate issues going on at the same time: 1) routine blood tests indicate two types of liver disease, tissue damage, as evidenced by high liver enzymes; and, 2) mole on my back that is suspicious of melanoma.  I had an abdominal ultrasound done and I received the results today--"essentially normal," with the one finding that appears abnormal on my reading of the report is calcifications on my spleen.  Liver, gallbladder, bile ducts and pancreas appear normal.  My primary care doctor is looking at my mole this Thursday, 7/30/15, and, based on photos that I sent him of my mole, and my prior history of dysplastic moles, he has already told me that he is referring me to dermatology at the University of Michigan Health Center.  My question is whether the abdominal ultrasound would have likely spotted a cancer metastasis from the mole on my back, if the mole turns out to be melanoma? 

As added information, the liver damage is most likely caused by meds I've been taking for several years for several autoimmune disorders. 

DianaD

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davekarrie's picture
Replies 5
Last reply 7/29/2015 - 2:34pm

I had a CT scan today and there is a 3.4cm mass in my right lung, and consistent with melanoma. Will get a PET this week to determine for sure. Still praying it isn't but unfortunately looks like the beast is back. There is also an area of concern in left lung that is 1cm by 8cm, but this has fluid in it. I have had a cough/cold so hoping maybe this is infection?  Just hope PET doesn't reveal more areas, so scared, I have  4 year old son and want to see him grow up!  I am wondering what treatements have worked for lung mets, is resection an option? I will be going to Mayo clinic and working with a Mel specialist but wanted to get input from this great group. Thank you so much for any help. Dave

Live life to the fullest and enjoy each day!

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andrewuk's picture
Replies 5
Last reply 7/29/2015 - 10:06am
Replies by: andrewuk, Anonymous, Kim K, Janner, stars

Hi all - I am brand new to this site so appreciate any views and opinions given.

There seems to be very little out there in terms of conditional survival rates.

I am 4 years post initial surgery of a 2B melanoma with clear sentinel lymph biopsy.

Is it safe to assume, as time goes on, my survival statistics improve quite considerably?

All of my follow up appointments during the last 4 years have been clear with nothing detected.

Thank you.

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Bubbles's picture
Replies 3
Last reply 7/29/2015 - 4:07am
Replies by: stars, jamieth29, Mat

Thought about you all day, my friend.  Here is the best of what I've got...outside the melanoma sucks great big green hairy wizard balls box:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/for-mat.html

I'll keep thinking.  Wishing you my best.  C

chaoticallypreciselifeloveandmelanoma.blogspot.com

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jamieth29's picture
Replies 10
Last reply 7/29/2015 - 3:35am

Well after signing papers for a trial in chicago Wednesday i got home and for some reason was looking at my scar. As i looked closer i noticed a bunch of small tiny dots up and down my scar very small. I immediately freaked out and called the derm to biopsy them. Again the cancer is back. Not sure how we are going to approach this. I'm pretty positive there is just to many to resect and even if the surgeon can I'm not sure it is worth it. The spots keep coming back very fast. My last scan was june 16th and mri was june 10 and so far have been clear. I did have the deeper groin dissection on june 25 because of positive node biopsy seen on june 16 scan. I have had no radiation or treatment just surgery since my diagnosis in april. I have had doctors tell me radiation doesn't work but the radiologist thinks it might. My question is anyone have experienced anything like this? As of right now the trial is out because i have to be ned. My onc. At home thinks maybe radiation then ipi. I am seeing surgeon monday and then Dr Luke in Chicago on tues to get his opinion. Limb perfusion will not work because its too high on groin. Does systemic treatment work on superficial legions? If I'm 3c unresectable should that open up pd-1 to me and would it be worth trying them as first line drug? Also wondering if braf drugs might work on this although i don't want to use them this early. I'm going insane with this crap it just keeps coming. Any help is appreciated thanks.

Jamie

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jvictoria's picture
Replies 7
Last reply 7/29/2015 - 12:19am

Hi all, just wanted to find out how bad the post-operative effects of this procedure are going to be...

Will I still be able to function post-recovery... basics (using the arm for day to day activities), sports (cycling)

Thanks

Juan

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Anonymous's picture
Replies 7
Last reply 7/28/2015 - 11:37pm

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

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michaelinsocal's picture
Replies 5
Last reply 7/28/2015 - 9:20pm

Hi all. I have been diagnosed with multiple nodules on my thryriod. Nothing has been determined to be cancerous. I am seeking comments to those who have had a similar diagnosis, course of action and the insuing results.

A little background....

Diagnosed with stage 3a spindle cell melanoma on my outer left foot, just below the ankle bone. Had a WLR with SNB in Dec, 2013. One node positive with micro mets, left groin lyphodectomy in April 2014. Removed nodes were all negative. Interferon for 1yr. I have a rotating schedule of Dr appts every 3 months (surgical oncologist, immunotherapy Oncologist and dermologist).

The nodules were first detected by my only pet scan, done in Jan 2014. My surgical ONC ordered a ultrasound April 2015 which as many as 5-7 nodules, the largest bring 2.1. They don't appear to be growing and neither Dr can feel them.

Sugical ONC ordered blood work, all normal (no hypo or hyper) but my TWC? Was twice normal. From what I read, a high count isn't conclusive of cancer. The Dr wants to skip doing further scans or biopsy because as he put it (my throat would be a pin pad from all the poked) and wants to go straight to surgery.

I have a deliberating problem with that. My body has already been through a lot. Another surgery for something that *may* be cancerous is doesn't sit well. My regular ONC agrees and had ordered a follow up ultrasound in Sept along with my second set of scans (no pet this time, CT and Chest) to determine further growth, if any, in my thyroid. 

Just curious if any else has been through this and and what course of action you took.

Any helpful advice is appreciated.

Mike in SoCal

 

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mkirkland's picture
Replies 10
Last reply 7/28/2015 - 7:18pm
Replies by: DianaD, Janner, kathycmc, stars, mkirkland, Anonymous

My story starts out kind of strange... a few months ago my fiance and I were moving around some furniture when I noticed a flat mole/freckle on his side near the ribs that had started changing colors half way through. I stayed on him to make an apt at his dermatologist and thank god he did. He was diagnosed with stage 1 superficial melanoma. It measured I believe 0.2 mm. We had an apt with the oncologist surgeon and they cut a pretty cut chunk. Well, since then he has been on me to go get this mole on top of my right foot looked at. Well, I finally went in and this week I received my diagnosis... stage 2 malignant nodular melanoma. I was floored when I received this report. I got a copy of my path report and on the report it says it cannot rule out metastasis. My apt w/ the oncologist is not for almost TWO WEEKS. So of course I am curious about others with this diagnosis and how was surgery/treatments? I am scared & nervous but at the same time I have faith that God will see me through whatever course of action we must take. Any feedback would be greatly appreciated!    

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/28/2015 - 7:08pm
Replies by: DianaD

Hello,

I thought I would give this a try. My finance is who I am writing about, not myseld. He is 22 years old and has moles on his body his entire life. He has had them checked around 6 years ago. Well, recently he has been having night sweats every now and then and he also has a couple "holes" on the sole of his foot. I read online that these could be linked to melanoma.. and since he has so many moles that does not surprise me. He also has developed two moles on his scalp that have caused grey hair to form.. I read that those are nothing to worry about but as his fiance and him only being 22 I am FRIGHTENED. I guess what I am on here asking is... because he had these "spots" on his foot and occasional night sweats is he in danger of having melanoma??? We go to doctor in September but so scared to wait that long.

 

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rabbits68's picture
Replies 3
Last reply 7/28/2015 - 5:50pm
Replies by: rabbits68, Aussielyn, dfeng

3 month scan showed tumor regression in lungs, liver and bone! One has disappeared! I am having a few side effects from the meds. Anyone experienced back pain or joint swelling?  My wbc count is getting low and doctor has mentioned adjusting dosage. I am so thrilled about scan but am scared about wbc level.  Any personal experiences? 

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jvictoria's picture
Replies 13
Last reply 7/28/2015 - 11:38am

Hello all,

Melanoma Stage III, I have already distal thumb amputation and sentinel node which came back with two positive nodules.

I'm currently scheduled for Lymphadenectomy 7/31 but have been told it would be a good idea to get scans (PET/MRI) done before; some doctors are saying do scans before, some say do it after surgery. Doing before would mean 3-4 week postponement of the Lymphadenectomy.

Thoughts?

Juan

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