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.

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My father's melanoma has spread to the brain, lungs and abdomen. His brain tumor responded well to radiation. He then had 4 rounds of Yervoy which were not successful. He has completed 4 treatments of Optivo, but the area around the (dead) brain tumor is now experiencing significant swelling.

The doctors mentioned Avestin but were not sure if there were any statistics about using that to treat Melanoma and in conjunction with Optivo. 

I'd be interested in hearing about any experiences anyone has with this. 

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JoshF's picture
Replies 7
Last reply 8/2/2015 - 12:03am

Well PET last week showed NED. I was a bit nervous because she said abdomen was bright but she felt it was contrasting and wanted to wait on offical radiologist reading. Though she was comfortable with results; I wasn't until I received official word. I've been very fortunate and grateful to my docs and the support I've received here.

We discussed scanning and for those of you familiar with my story, I had the local recurrence this past Jan after doing IPI & IL-2 Combo in Jan 2014. I didn't have clear margins prior to starting treatment and they felt then that I may possibly need surgery after treatment due to perfusion(?). Regardless I had the 3rd recurrence which basically would put me at only 6 months NED now. My onc feels that we can push out scan to 6 months as she has concerns about all the readiation I've been exposed since the fall of 2013. I know many of you have been through more....I'm just very conflicted I what direction to go here. I like the scans to know what's going on...really I guess you like them when they come back NED. There is a tremendous amount of scanxiety a few weeks prior to scan. I guess I just want to give myself the best chance to stay ahead of it because after 3 recurrences I can't stop thinking of if it comes back...I always think like when it comes back. It's hard to balance all of this and if anyone has suggestions...I'm always open to hearing them.

Wishing you all the best!

Josh

Let's work for better treatments....for a cure!!!!

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AshleyS's picture
Replies 7
Last reply 7/30/2015 - 1:34pm

Hey guys,

I had my fourth Opdivo dose today (after 3 ipi/Opdivo doses and 1 dose of ipi alone). I have 1 more dose here in ND before I head down to TX for scans at MD Anderson. 

I feel like I've been handling everything so well, but then this morning I felt a lump where a former tumor was located. Ugh. It's pea sized, but it's got my head spinning. 

I've also been dealing with lots of fatigue and stomach issues (cramping/diarrhea) from the treatments. I can handle that, but I hate that I'm "out of commission" for my kids (2 1/2 and 8 months) and my husband. This gets me more than anything. 

Thanks for letting me vent. 

Ashley 

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mike_nj's picture
Replies 5
Last reply 7/30/2015 - 12:52pm
Replies by: Janner, Anonymous, stars

Hello All,

Skipped a year but went for X-Ray and all came out clear for chest.  They switched me to X-Rays after many years of Ct & PET scans.  About 8 years ago, I set off radiation detectors after a PET at the Port Authority bus terminal in NYC on my way home.  Three police officers converged and I explained that I had a PET and I was released to go.

Stage 1A in 1999 and then progresed to stage 3B in 2004 with macro sized node in right axilla.  Had the surgery, radiation, and clinical trial with mel-43 vaccine (Dr Slinghoff from UVA) in Pittsburgh.

Lymphedema in right arm since then with limited mobility.

I feel very fortunate and am grateful to God for my good run but I know that follow ups will be endless with this disease.

My hope is that all new patients understand that even if one progresses (as I did), there are still options and hope for decent outomes.

Next on agenda is colonoscopy and cardio checkup and a diet to shed some weight.

My younger sister was recently treated for melanoma in-situ and I gave her bad advice but luckily Janner came to our rescue with sound and correct advice.  Thank you Janner.

Mike from New Jersey

 

 

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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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