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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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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kimgibler's picture
Replies 1
Last reply 7/27/2015 - 5:49pm
Replies by: arthurjedi007

How long until this starts working?  Does anyone have first hand experience?

 

My husband is almost on his 3rd round, plus tafinlar, and showing no signs of getting better.  Lots of pain and tumors getting bigger.

 

 

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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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Mrbass's picture
Replies 5
Last reply 7/30/2015 - 11:54am
Replies by: Mrbass, Janner, stars

Hi,

I recently found a mass on the shoulder/arm area had my local surgeon remove it. The path report said it was metastatic melanoma spindle cell type, but there where some unknowns so the slides were sent to The Cleveland Clinic for furthur testing. That report was the same diagnosis.

Then I saw a surgical oncoligist he wants to widen the borders and check the sentinal lymph nodes. But wont be for 3 weeks. Having a pet scan this week. The dr said he wont consider this metastatic until a primary site is found. With 2 path reports saying metastatic melanoma I'm thinking we are acting to passive here.

I asked about a dermatoligist and was told maybe after surgury. The Dr didn't even look me over for the primary, just relying on scans.

Can the report be wrong or is a sure thing I have metastatic spindle cell melanoma?

Thanks,

Matt

 

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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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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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Scooby123's picture
Replies 9
Last reply 7/30/2015 - 3:46am
Replies by: Scooby123, mrsaxde, Anonymous, dfeng, 273c

Hi everyone hope you are all having a good day. I have completed ippi had itchy, stomach pains bumps here and there but did settle. Now I have finished ippi I have been experiencing pain were tumours are liver especially ,lungs can anyone who had ippi had this after treatment . I did have pain a bit when on treatment but it seemed to move around but now constant. Had scans but results not till 6th august .

scooby123

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kspfjsaf's picture
Replies 5
Last reply 7/26/2015 - 4:13pm
Replies by: DZnDef, Anonymous, 273c, Janner, stars

 

My wife was just diagnosed a few weeks ago, and we had the wide area excision and SLNB last week.  I know we are so lucky to have everything come back negative.    The oncologist is saying that at this point the standard of care is just to come back every 3 months and he'll do an exam, feel the lymph nodes, ask how she's doing, and thats about it.   We just have to hope that she's not in the 10-20% where she gets hit with a stage 4 metastasis down the road.     He doesn't even want to think about doing a PET scan down the road because he says the chances of getting a false positive (and the resulting surgeries and complications from it) are too high.

I guess we're just not feeling too happy about this course of action, although I understand from doing a lot of reading it does seem to be the norm.   Although the mitosis rate is 2, the depth was just barely over 1mm (1.12).  The SNLB tracer localization was supposed to be very strong, so the surgeon feels very good that we got the 3 lymph nodes that the cancer would have spread to.  

Is it just crazy to try to push for some of the new drugs as adjuvant therapy (I know we'd have to pay out of pocket, yervoy is ~140k and the PD-1 inhibitors are more?).    But setting aside the monetary cost, the oncologist seemed to think that the toxicity risk of the new drugs outweighs any positive benefit we might get.  However I feel like it has to be a lot easier to nip any microtumors in the bud right now rather than wait until they are so large they will be caught be a physical exam.  Although I guess if your system/cancer reacts well to the new drugs, it will react when the tumor is large, and you don't necessarily need to try to get a jump on the process?

Interferon doesn't seem like a great option at all (although it did work for my nephew at stage 3, 8 years disease free now!).   Neither are the vaccines from the data I've seen.

Should I at least look at getting her to another melanoma center for a 2nd opinion and push for the PET scan in a few months? 

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mbd's picture
Replies 2
Last reply 7/25/2015 - 5:14pm
Replies by: stars, Janner

Hi,

I am away for the month and have discovered what may be another melanoma on my leg. It is right near where the first two occurred.(1st one-2013, 2ndone-May of 2015) It looks like a blood blister and I was hoping that it was- but it has not changed since I first noticed it 10 days ago.

I have an appt w/ my dermotologist on 8/4 but am wondering whether I should get it checked beforehand at a local clinic near where I am staying. Input appreciated.

Thanks

MBD

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/25/2015 - 2:42pm
Replies by: Anonymous

My Dr said they changed the upper limit of the normal range from 100 NG/ML to 50 NG/ML, due to Increased risk of hypercalciuria.  What is the recommended level we really be at?

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/26/2015 - 4:21pm
Replies by: Anonymous, mrsaxde, jamieth29, SABKLYN

Can anyone shed some light on what will happen in my first meeting wtih the surgical oncologist? What will he do in that appointment? 

 

Thanks!

Christine P. 

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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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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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stars's picture
Replies 21
Last reply 7/31/2015 - 11:29am

Hi

I'm sure this topic has been done before, but things change over time. I'm really curious what changes, if any, people have made to their diet and lifestyle after a melanoma diagnosis. My instinct is to try to clean up my act a bit - I don't really drink or smoke, but I'm reading up on plant-based diets and working towards getting a bit more exercise and balance in my life. The book I'm reading is The Complete Macrobiotic
Diet by Danny Waxman - I don't know if I can implement all the changes, but I can certainly do some and they line up pretty well with e.g., the Harvard Healthy Eating Plate.  Thoughts?

Stars

 

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davekarrie's picture
Replies 2
Last reply 7/24/2015 - 4:56pm
Replies by: RaquelP, dfeng

I am worried that I have a possible lung met.  My history: I had a 1.5mm mel in Nov 2010, went micro to 1 lymph node, 42 nodes removed under left arm,  been NED since.  Have been healthy since about 1 month ago when I started coughing.  Cough has been getting worse, went to dr. last fri, thought maybe infection, have been on antibiotic for 1 week, not better. Got chest xray the other day and dr. said there is a 3cm spot on right lung. I go see my oncologist next Tue sure they will do scans.  Hoping this is some sort of infection and not a lung met, but preparing myself for the worse and wanted to touch base with this awesome group if this is the case. Thanks for any input. Dave

Live life to the fullest and enjoy each day!

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