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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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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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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Julie in SoCal's picture
Replies 12
Last reply 7/31/2015 - 4:43pm

Hi there Friends!

Yesterday I had Pembro infusion #5 and it seems to be working!  When I started this round, I could feel four pea to grape sized in-transits, now I can't find any! Rock Star Doc couldn't find any either (and he's the expert!!!).  So we did the happy dance as he writes NED (no evidence of disease) on my chart again.

The other news is that my Rock Star Doc has moved to a different hospital and they're still getting everything set up for infusions. Their temporary solution has been to use the VIP rooms--nice, big room to myself, private nurses, coffee or tea, and a TV to watch if I so desired. Rock Star Doc said not to get used to it...that might be difficult wink emoticon

 

 

Wishing you all NED!

 

 

Shalom!

 

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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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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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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