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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I am currently being treated at the Arizona Cancer Center associated with the University of Arizona. Banner bought them and now all of the melanoma specialists have left or are leaving.  I was receving great care but that is going away.

The only option there is to be treated by an oncologist trained in another form of cancer. If anyone can suggest a doctor in AZ that is a melanoma specialist please let me know. I will have to travel but want to keep it to 8 hrs or less away from Tucson.  I am currently stage 4 and have had ippi and am currently on Keytruda and have done radiation on 2 of my lung mets. I am hoping to try t-vec when it comes out.

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jvictoria's picture
Replies 2
Last reply 7/17/2015 - 1:23pm

Background...

> Got Diagnosed this June after a missed diagnosis last July 2014; colorless melanoma on the right thumb nail bed.

> Went to Moffitt (Tampa, FL) for second opinion and decided to have initial treatment done there

> Had distal right thumb amputated and sentinal node performed

Results are back... Amputation went as well as can be expected. Tumor 5mm depth and Clark level of 5.0mm. Sentinel node came back 2 of 10 nodes positive for cancer. Current recommendation is a follow up complete lymph node dissection in right arm and then potentially go on a clinical trial.

I have been getting some conflicts on the benefits of the dissection... some people are saying that the full node removal sholdn't be done and I should go directly on a trial... then I hear you cannot go on a trial unless you have all your nodes removed.

All your thought and knowledge are greatly appreciated...

Also, curently thinking of getting a second opinoin at MD Anderson or Sloan.

Juan

 

Juan

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Beezer's picture
Replies 5
Last reply 7/17/2015 - 5:21am
Replies by: Beezer, arthurjedi007

My poor sister is not doing so well right now, she was hospitalised a few days ago as she lost the use of her legs and arms, she had three doses of ipi and has just had one infusion of keytruda. She also had whole brain radiation done in February but we thought she had recovered from the mobility issues with the WBR but she seems to have relapsed again, we are so distraught right now, we not sure it's the keytruda which was started three weeks ago or is it after last ipi infusion or whether our poor warrior is losing her battle. She is due to have a second infusion of keytruda next week so we are worried they will not give it to her, please can anyone share any insights at all 

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Joe.Pro's picture
Replies 6
Last reply 7/16/2015 - 10:56pm

I officially begin the ipi/nivo combo next week at Mass General in Boston.  I'm ready to wake up my immune system and evict these cells outa my body!

Anyone else here having success with this combo treatment?  

Joe

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Steph001's picture
Replies 2
Last reply 7/16/2015 - 9:51pm
Replies by: Steph001, Janner

I had a biopsy done that came back as melanoma and was sent to MD Anderson. I had my wide local excision today. Today I was also given a report that the MDA pathologist did on the original biopsy. It differs just a bit from the report that the first pathologist did. Is this common? The Breslow depth and Clark levels are the same but they differ on mitosis, ulceration, vertical growth, radial growth, and tumor infiltrating lymphocytes. As far as I can tell these things don't make the diagnosis worse, is that right? 

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Rita and Charles's picture
Replies 11
Last reply 7/16/2015 - 3:05pm

HI All, 

It's like Christmas [ well sort of if you had a very grim Christmas] and we received Charles' medication.  Can anyone that takes this combo/ or has taken it share if you took it on an empty stomach or after eating for best "feel good" life??  

Does if make your tummy super upset?

Thanks - any comments are helpful!  

Good news, our first 5 months we got covered by a patient access $ pool - super nice gal at the pharmacy worked with us...........see, like Christmas?

 

Rita

Rita

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Rita and Charles's picture
Replies 13
Last reply 7/16/2015 - 2:18pm

So how we eat to improve health............just laying it out there that I am a past pastry chef and there typically is ice cream in the fridge!  A friend who is a nutritionist has shared with us some big NO NOs on how we should be eating.  We eat well now, but indulgences exist......

How has everyone changed their diet in this new "cancer enviornment"?

Rita

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Mrs.GL's picture
Replies 6
Last reply 7/16/2015 - 12:17pm
Replies by: Mrs.GL, Anonymous, Kim K, jessica_f, Janner

Hello - I am revisiting this site as I am going through a bit of a scare recently and was hoping to get some advise/thoughts, I appreciate the information you all have provided others.

I had a chest x-ray that came back with a small lung nodule. (My original MM diagnosis was 1mm clark level IV, neg SNLB). I insisted on a CT scan, that came back with a 4mm (not from original 3mm) and a 8mm some degree of airspace density may be inflammatory.

I have one PCP that says I have no reason to follow up on this and another that says if it were her she would see a pulomonary Dr just to be sure. Sometimes I feel I am overreacting -  I'm very confused. I have a referral to see a Pulmonary Dr. in Vegas.

Thoughts / advise please?

 

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JoshF's picture
Replies 4
Last reply 7/16/2015 - 11:42am

I have Pet/CT on Wednesday. I must have forgot it was a Pet. For those familiar with my story, after I had surgery in January to remove the recurrence or whatever was left after ipi and IL-2 they did a Pet which was clear followed by a CT in April that was clear. Just not sure why another Pet so soon. Of course I'll ask. Think I was too excited last time to even think about it and now some serious scanxiety is setting in. As usual trying to rationalize everything going on in my head.

Josh

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

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kjgregg89's picture
Replies 14
Last reply 7/16/2015 - 8:39am

Hi there and happy Friday! 

My fiance, Dave, was recently diagnosed with stage IV melanoma.  Unfortunately, this is not my first rodeo with this disease, as my stepfather was diagnosed in 2012 with metastatic melanoma as well (he's doing great!  Treated with high dose IL-2 and has been NED for a full year now. Yay!).  Anyways, I am on here almost daily reading posts and sharing your stories with Dave.  He is encouraged by the success stories and finds comfort that he isn't the only one fighting this awful disease (melanoma [and cancer, in general I think!] can make you feel so isolated and alone!).  Thank you all for that - it is so helpful.

Dave wanted me to reach out to see what other people have experienced on Keytruda/Pembro or Opdivo.  He received his first dose of Keytruda on July 1 and has been absolutely exhausted since the infusion.  Prior to his diagnosis, Dave was an extremely active guy - he played baseball, softball, golfed, and went to the gym regularly (he is only 35!).  He of course doesn't have nearly the energy he had before, but he wanted to know if anyone else's oncologists recommended exercising as much as possible while going through treatment or to let his body rest.  I would think that exercise and movement would be helpful for added healing, but wanted to hear what others had to say. :) 

Regarding his other side effects, he's had some migraines (he has multiple small brain lesions and had a craniotomy on June 9) which we have been told are normal and to be expected by his neurologist and oncologists. 

Thanks again to all of you wonderful people for your stories and support!  You make recently diagnosed individuals not feel so lost and alone, and, most importantly, give us hope.  

Best wishes,

Katie 

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Came across this article about the scum-of-the-earth that prey on cancer patients: http://news.cancerconnect.com/cancer-treatment-quackery-fuels-concern-am...

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Anonymous's picture
Replies 4
Last reply 7/15/2015 - 6:11am
Replies by: AshleyS, Janner, Patina

Hey guys. Bad news for my family today. My brother (maternal half-brother, 14 years my senior) found out he has Stage IA melanoma, upper left shoulder, Breslow = .6. He's having a SLNB next week. I told him to ask for a PET as well. Any other tips for him, especially because of my history?

Thanks,

Ashley

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We are getting close to a course of action.  Charles Oncologist recommended surgically removing the mid lobe of the lung and all the lymph nodes.  Post surgery , starting Charles on Vemerafenib + MED.  If that course of action failed, immune therapy would be recommended.  Charles has had huge anxiety about the surgery - what if all the lymph nodes weren't successfuly removed, why go through trauma if this is not going to be 100% successful.  

We met with Dr. Daniels of UCSD as well, a melanoma specialist. Below is the recommendations from him that we are leaning towards - Brain MRI is scheduled for next week.  

Dr. Daniels does not think the surgery shoudl be done.  Below is his course of action:

Pembrolizumab (Keytruda) is likely the safest therapy of the immune modulation options. Response rates are between 40 and 50%
 
Ipilimumab (Yervoy) is the second for safety. If I were to use Ipi, I would ask a radiation oncologist to consider stereotactic radiation to one of the lung lesions. Data suggests combining radiation to Ipi enhances response. Response rates alone are between 10 and 15%. Unclear exactly how much radiation adds.
 
_______________________________________________
We will be composing a course of action letter to Dr. Kosty [ he is the head of Oncology at Scripps Green Hospital in La Jolla - this is where our health insurance is]  D. Daniels is a melanoma specialist at UCSD Moore Cancer Center in La Jolla [ we are going to see if we can switch insurance to use him, but we can't wait to start treatment until that happens, if it happens]. 
 
How do doctors react when you tell them you want them to follow an outside second opinion course of action?  I don't care about his feelings.....but to confirm, that is our patient right correct?
 
PLEASE CHIME IN ON ANY PART OR ALL OF THE ABOVE.  This forum has been a god send, we are on unchartered waters here and know that our decisons are life choices......serious flipping decisons.  
 
Thank you, 
 
Rita

 

Rita

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Thandster's picture
Replies 9
Last reply 7/14/2015 - 11:37am

I have been on BRAF/MEK with mixed success. It has helped many things, but my liver has gotten worse. My Onc. Is VERY concerned that I dont have much time left and so she decided today to take me off the MEK and use a combo of Dabrafenib and Nivolumab. I go first thing tomorrow morning for my first infusion of Nivolumab. Has anyone else used these two together? Any info or thoughts appreciated.

Thank you,

Thandster

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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CC19's picture
Replies 4
Last reply 7/13/2015 - 9:06pm
Replies by: CC19, Janner

Hello...I'm new at this so please bear with me.  I had a shave biopsy done at MSKCC on 6/1/15.  It came back melanoma with margins exceeding biopsy.  The pathology report was very brief and did not contain any other useful information.  I have an appointment on 7/15/15 with a surgeon to discuss path report.  And they have already scheduled my WLE  at the end July.  My question is......can they tell from a shave biopsy that the melanoma is a melanoma in situ ( because a shave biopsy is not deep) or will they biopsy the WLE as well to tell the depth of the melanoma?? 

Thanks :) 

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