MPIP: Melanoma Patients Information Page

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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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Coragirl's picture
Replies 1
Last reply 12/12/2019 - 12:08am

Hello all, I just have a quick question. My husband stopped his treatment with Opdivo back in March due to pneumonitis. His symptoms have been improving and he is seeing another doctor to help get his lungs feeling good again. On his last scans it showed he may be developing colitis, at scan time he didn't have symptoms but he does now. Could this still be effects of immunotherapy?

Amie Taylor

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Hi! I had a 0.3 mm melanoma removed in June of this year. I went to my derm for a follow-up skin routine. They asked if I would be interested in having DermDX testing done. From what I understand, it tests your biopsy site to see if you are high risk or low risk for metastasis. Does anyone have any experience with this? My worry is that it will come back as high risk for metastasis I’ll have severe anxiety. I had so much anxiety after the initial diagnosis, but it has gotten better over time. My doctor explained it as a test to see treatment/how closely they monitor me. Any advice from anyone who has had experience with DecisionDX?

-Amber

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mandyjill's picture
Replies 3
Last reply 12/12/2019 - 3:23am
Replies by: MelMel, lkb, sing123

I don't post too often, but keep up with all y'all. Had my quarterly scans and oncology visit today, and got the all clear. Woohoo!. I participated in a clincial trial of Opdivo and Yervoy for Stage 3B and finished the infusions a year ago this past August. My prayers are with you all that we can all beat this disease.

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Edwin's picture
Replies 6
Last reply 12/12/2019 - 3:20am

I had a PET scan on Wednesday December 4 and received Opdivo immunotherapy today.

From the PET scan report:
"IMPRESSION:
1. The whole-body disposition FDG is physiologic.
2. Previous study showed mild activity in left parapharyngeal lymph node. This has normalized.”

“Physiologic” means normal [NED].

PET scan SUV maximum of lymph node under my left jaw.
3.7 2018 April
4.2 2018 September
4.0 2018 December
3.2 2019 March
2.6 2019 July
2.0 2019 December ( “activity at background levels” )

The increased activity under my left law in September 2018 could have been disease progression. I skipped two 240 mg infusions of Opdivo, so I could have cataract surgery in both eyes in August 2018. The increased activity could have been pseudo-progression due to healing after radiation. I received radiation to that area under my left jaw in April and May 2018. Since the activity has decreased, I assume the increase to SUV 4.2 was pseudo-progression.

Dr. Anu Gaba has been my oncologist since September 2014. I have been receiving immunotherapy since November 2015. In March 2016 I had melanoma in several bones. Pembro immunotherapy had failed. I began ipi + nivo immunotherapy on April 1, 2016. My bone cancer disappeared. Then a tumor appeared under my left jaw. Dr. Gaba plans to stop immunotherapy in May. She bases her plan on recommendations of Dr. Jeffrey Weber.

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jennifer83's picture
Replies 5
Last reply 12/11/2019 - 4:31pm

Just a melanoma update!

I had my first ipi/nivo infusion on 11/30 and a lot of my subcutaneous lesions are shrinking (not per a doctor, but I can see and feel this myself).! I have a lot of under-skin metastasis and many of my lumps have come down in size significantly. I wish this is something to be hopeful for! Praying that it's also shrinking the masses in my liver and lungs.

I have developed the ipi/nivo rash - it's mildly itchy and just a little unsightly.

My biggest concern are these new masses that have developed on my scalp. I have about six new growths that are odd - different than my other lumps. They almost look like blisters, but they're solid. They itch, as well. I've done some googling, but haven't seen anything related to it. If anyone has thoughts on it, I'd love to hear.

So far, I'm managing work just fine and feel pretty well.

Fighting alongside you all - Jennifer

Jennifer

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sing123's picture
Replies 4
Last reply 12/12/2019 - 3:09am
Replies by: MelMel, lkb, Coragirl, JudiAU

I haven't been on in a while. Feeling sad for recent news of HappyGal's family, and greatly hoping that you, Mike and Mark R, get some HAPPY news soon that will turn your health back around. Thought I'd pop on and share something hopeful. I am still NED more than a year out now from my recurrence.. Doctor used the word CURE! Well, gotta get back to my wedding planning. In two weeks, I'll be a married lady again. Fiance jumped back in my life at the start of my cancer journey, wouldn't quit me as they say in the world of old blues, and here we are. Life is wondrous, and I'll never take it for granted again.

I hope everyone is surrounded by love and peace in this holiday season.

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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Any experience? I’m frightened.

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Roberto's picture
Replies 6
Last reply 12/10/2019 - 11:31am

Hello everyone. I was out of this forum for a while taking care of my wife who went through an isolated limb infusion. Just a palliative treatment to try to prevent leg amputation. Well, has anyone ever heard about using a drug called Levantinib in conjunction with pembrolizumab to treat melanoma? Levatinib is an approved thyroid cancer drug but is currently under study for the treatment of melanoma. My doctor came back from a congress in Europe and said that everyone was very enthusiastic about the potential of this drug also for the treatment of melanoma. There are several studies of this drug for various types of cancer, including melanoma, and it seems that the preliminary results seem to be fantastic, according to my doctor informed me.

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Oyoy's picture
Replies 3
Last reply 12/12/2019 - 1:18am
Replies by: lkb, QuietPoet, JudiAU

First off, I know this is a typical problem and don’t really know how to stand out from others. Sorry about that.

So, I have a mole. It is somwhat multicolored, unsymmetric and has irregular bordets. I’m pretty sure I’ve had it for years, but I don’t know if it has always had these atypical features. For some reason I started to worry a bit back in August, and went to see a doctor who wasnt’t too concerned and said to observe it and come back if it changes. It has not changed since then.

A week ago I suddenly startes worrying again. I now have dentological imagets being analyzed, and I have an appointment to get the mole removed. During this past week however, I’ve started getting all kinds of symptoms. There are pains close to my armpits, both tenderness on the sides of my ribcage right underneath the armpits, as well as a lot of (but relatively weak) random pains that just comes and goes. There’s also some similar pains i my neck and throat, tingling and weird sensations all over. I understand that this all coming rapidly right after I started freaking out in the first place is a pretty clear sign that there is something psychogenic going on. But how can I convince myself that it’s not melonoma that suddenly startes spreading and in a matter of days have given symptoma in all my lymph nodes (and other places)?? Is such a rapid spreading even possible? Urgh.

I guess there is not much for people here to do about it, but at least it’s nice to vent I suppose.

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/8/2019 - 10:07am
Replies by: ed williams, MelMel

Hi there,

Just finished a year of opdivo for stage 3c back at the end of September. All went fairly well...I’ve been having clear scans and the biggest issues I had during treatment was getting hypothyroidism, slight rash and being tired.

Anyway, fast forward to 2 weeks ago. I got my port out (yay!) as I just want to be done this season of my life. But I bled on and off for 2 weeks from the incision site. Also started getting really bad bruises on my legs for no apparent reason. A couple nights ago I woke up and my chest was drenched in blood from the port site. Went to cancer care emergency in the morning, got blood tests and it turns out that it was the opdivo that gave me low blood platelets which meant I couldn’t stop bleeding. So my question is, does the fact that I’m still getting symptoms from opdivo over 2 months after stopping treatment give me a better prognosis? And has anyone else had low blood platelets due to taking opdivo?

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Hanaln's picture
Replies 3
Last reply 12/8/2019 - 7:53pm
Replies by: Coragirl, Bubbles, MelMel

For those that don’t know my story, my 33 yo husband was diagnosed with stage 4 melanoma is April 2019. The first dr that saw us was not a specialist And told my husband he would be lucky to live 3 years. Basing this on knowledge of a past melanoma my husband had and waiting on the new PET scan results. Well come to find out the next day he looks at the scans and says he is surprised to see no other cancer so that was good. But why give us a 3 year life sentence if you don’t have all the information? That continues to stick with and bother my in my most anxious moment. After that we changed to a melanoma specialist and have had better care. Last week my husband had his second set of scans since starting Keytruda and there was so signs of cancer. Just as his first scans showed. I feel like this is great news right?? It is hard to tell what the dr is thinking because I think they’ve been trained to not show too much emotion. I’m always worrying about my husband, our baby, the next scans, how our lives will look in a few years. Will it be our family unit or will I be a single mom and widow? I can’t go there because my thoughts get dark but I feel safe sharing on this site. I guess a few questions are, what are your experiences with doctors and how the deliver you scan news? Does it make sense to think that the longer he beats it without anything reoccurring the better? Or does it even matter? I’m trying to educate myself while also trying to sift through the information to see if there is any way to restrain my worry and anxiety

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Steve33's picture
Replies 3
Last reply 12/10/2019 - 7:44pm

Hi,

First time poster. Thank you to all that have shared their stories. This forum has been both informational and emotionally uplifting as I begin my melanoma journey at 33.

I am a stage 3B patient at MD Anderson and have been prescribed Opdivo. Overall I’ve been very happy with my treat at MDACC. However I’ve run into some “red tape” between my insurance and MD Anderson. Long story short, my medical plan through Aetna covers the medical costs to administer Opdivo, but the costs for the drug are carved out to CVS Caremark. The sticking point has been that MD Anderson has its own pharmacy, and “is not set-up” to work with CVS Caremark, even though CVS has been willing to simply be billed for the drug through MD Anderson. MDACC also do not allow the drug to be shipped to MDACC nor do they allow “brown bagging” for liability reasons. I find it a bit odd that such a large hospital and a large insurance firm can’t work out what seems to be a simple billing logistical issue. CVS has been clear that the drug is covered under my plan.

Luckily I believe I’ve found a work-around to receive the immunotherapy from Kelsey-Seybold, but it’s frustrating I’ll have to see another oncologist @ Kelsey-Seybold meanwhile still consulting with my MDACC doctors. I’ve also talked with a few 3rd party infusion centers in the Houston area, but they all have very little experience with Opdivo, so I’m not comfortable with it. I’m particularly concerned of the complicated logistics working between 2 hospitals if I were to progress.

Has anybody had similar issues? Any advise on ways to cut through this red tape? I’ve been in close contact with MDACC financial clearance, Aetna, CVS, and my employers benefits administration, but not optimistic that a resolution will be found anytime soon.

Stage 3B, Parotid Gland/ CLND, Opdivo

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Anonymous's picture
Replies 4
Last reply 12/8/2019 - 12:04pm

hi how to I look for really good treatment for this? I was just dx'd.
live in fairly rural area but drs. are associated with John's hopkins
and staff every case every week. first meeting with oncologist in 2 days. how do I know I'm getting the correct treatment???

bill w

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Julie in SoCal's picture
Replies 7
Last reply 12/12/2019 - 1:08am

Good Saturday Morning, Friends!

I Just wanted to check in, say "hey" and update you all on the what-nots.

First of all, this past week Lil' Chubbs, Doggo, and I did a simulated camping trip at Crystal Cove State Park. It was just one night (California camping is really just a competitive race for nice campsites) but I pretended that I was going for a week. I did this so I would check everything on the trailer out, see how it works and find anything that needed fixing. I can report that 1-night camping, even in an awesome trailer, is still a lot of work, but less work than tent camping. I can also report that the Doggo thinks the trailer is a big doghouse on wheels. She loves it! And it's even better that I join her in her doghouse. Of course, sleeping with the doggo is like sleeping with a toddler... but I digress. All in all, it was a successful first trip and I would say Lil' Chubbs the trailer is just about ready for next summer's Awesome Adventure (SoCal - Yellowstone).

If you're interested, here are pictures of Lil' Chubb's Maiden Voyage to Crystal Cove, CA https://drive.google.com/drive/folders/14shh7hi_BCm-c_kmfTwREtsAPaXP6zxf...

On the lung cancer front, the results from my bronch and hilar biopsy were inconclusive. Technically thery did not find any cancer, but they didn't get any lymph node, either. So we don't know what's going on there. I have scans Dec 18th and we'll see if there are any changes and figure out a plan from there. I also had radiation to T9&10 to mop up some pesky spinal tumors. The good news there is the the tests for radiation showed that the chemo was working!

On the melanoma front... it appears to this reporter, that the Mel tumors in my arm are shrinking. Now let me set the scene. While I have had a boatload of treatment prior to these critters popping up, I have not had any treatment to specifically address these specific critters. So when I told the Rock Star I thought they were shrinking, he yelled "WHAT!?! GET OUT!!!" and of course everyone came running. Could it be that previous treatment is kicking in and kicking Mel out? Or maybe this is the answer to the prayers of my friends and family? Just maybe! I'm thanking God for His mercy and calling this a win.

So this is the news! Forever grateful for friends, family and you all!

Shalom,
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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mrhubahuba's picture
Replies 9
Last reply 12/9/2019 - 11:26am

When does a patient usually seek out a clinical trial? Is it after all current avenues of treatment fail or should a patient always be on the look out for a trial? It's so confusing with all the different trials out there and I imagine it would be tough for the average patient to decide which one to choose especially since that decision can be a life or death one. Is it the patients responsibility to seek out these trials or the doctors? I imagine the doctors are so busy with day to day treatments of their patients that they wouldn't have time to screen every patient for admission to every clinical trial since every patient is unique.

Cheers
John

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