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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no one has told me how much a shot of Opvido costs, nor has anyone ever told me that there is a chance that my insurer might simply decided one day they aren't paying anymore. I found a number $6000/dose or for me $156,000 for a regime. but is that list price and how much does my insurer actually pay? I don't know.

I have an ACA policy with $1000 OOP but I haven' t read the fine print so who knows. I am blithefully ignoring the issue.

with that in mind read this:

https://www.salon.com/2020/02/01/is-the-medication-youre-taking-worth-it...

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Patinsf's picture
Replies 2
Last reply 2/2/2020 - 10:59am
Replies by: JudiAU, Edwin

Hello all

I was diagnosed with stage 1 b on my right ear unfortunately one of my lymph node was positive. I was told it was some micro metastasis (small amount of cancer cells in my lymph node). I had partial neck dissection with partial salivary gland taken out as well. Any way I am now 2 years later experiencing some facial pain with severe jaw pain at time. Also some Issues with my right ear as well same side where dissection was done. Fullness in the ear or ringing at night... Getting up in the morning. with fulness in the lower part of my jaw and below my right ear. All my scans are good no recurrence so far but wondering if I am dealing with side effects from the surgery still, 2 years later.....

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sj's picture
Replies 5
Last reply 2/4/2020 - 2:54pm
Replies by: Bubbles, GeoTony, MelMel, sj, JudiAU

Hello again Warriors!

I underwent a scalp reconstruction yesterday to close a Wide Local Excision on the left side of my scalp. It was (and is!) quite painful.

To put that in perspective I didn't have any meds after my last two surgeries (the initial WLE and Lymph Node Biopsy, and nose surgery to fix a deviated septum), but damn I needed it this time.

It took the doctors close to 5 hours to get the pain under control, but I'm feeling much better now. Ketamine and clonadine did the trick.

The great news is that they did not need to perform a skin graft! They were able to rotate my scalp and close the wound with a couple of flaps. I'm absolutely amazed because it was a 7.5cm x 5.0cm incision that went down to the skull.

I have a head full of staples, and the scalp is obviously a little indented but should heal from the inside out.

I also have a small subcutaneous hematoma that needs to be monitored, so we're (my wife and I) taking regular photos of it. They did not want to open me up again because of the risk to the scalp reconstruction, but if the hematoma increases I'll have to go back in and have it addressed - possibly lose the scalp and have a graft from both legs. We don't want that!

Here's to healing, and thank you all for the wonderful messages last night and this morning when I was unable to sleep. You're all such lovely, lovely people!

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AMcReader's picture
Replies 1
Last reply 2/1/2020 - 10:13pm
Replies by: MelMel

Hi Friends,

I’m dealing with a new situation that I’m trying to make sense of.

In March/April of 2019 I received 60grays of radiation to my right lung. Over the next few months I suffered from fibrosis but then it started getting better and now I feel completely back to normal, but I recently received some interesting information on my latest scan report that my fibrosis on this scan seems to have increased from the last scan.

My concern comes from the fact that they are saying that instead of fibrosis it could possibly be malignancy. I’ve talked to a nurse practitioner in my onc’s office who said our plan for now is to stay the course and re-scan in 3 months. My initial thought was that we should do a PET and figure out if this is malignancy or fibrosis, but they don’t think we should do that yet.

I’m not currently on treatment so I’m more than a little anxious about this wait and see approach. Has anyone else dealt with something similar to this where fibrosis got better and then got worse again? I know I’m preaching to the choir here but damn do I just want to be done with this melanoma crap.

Thanks in advance for your insight!

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sks2019's picture
Replies 6
Last reply 2/3/2020 - 7:22pm

Mom has been presented with another clinical trial option for her 7cm liver tumor. Its a phase 1 trial with a combination of drug MK-1454 with Keytruda. MK-1454 is injected directly into the liver tumor for 6 weeks once a week , Keytruda once every 3 weeks.

I am concerned as this a phase 1 trial and its basically her getting a liver biopsy every week. Any thoughts Bubbles and Ed ?

https://clinicaltrials.ucsf.edu/trial/NCT03010176

Thanks

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Richard_K's picture
Replies 2
Last reply 1/31/2020 - 3:56pm
Replies by: marta010, Bubbles

Diagnosed December 1998, stage I b on my left cheek, wide local excision, sentinel node biopsy, ok, good to go.

September 2009 a persistent cough turns out to be stage IV melanoma in my lungs.

December 2009, fail IL2.

March 2010 start stage 2 clinical trial for vemurafenib. Hypermetabolic activity stops in December 2010 and tumors stop shrinking February 2010. (Probable remains as scar tissue.)

September 2014, melanoma stage I a removed from my back with wide local excision.

August 2019, stopped taking vemurafenib, 9 1/2 years after starting.

October 2019 and January 2020, follow up scans and blood work are all good.

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Anonymous's picture
Replies 1
Last reply 1/31/2020 - 9:27am
Replies by: LRS88

I just received my biopsy results 2 level 1 melanoma removed. They got it all. I am having another 2 biopsies done next week. I am terrified. I feel my fear is worse because I am pregnant & it’s not as simple as just getting treatment of a higher level melanoma is found. The prospect of termination is gut wrenching. I’m hoping My next biopsies are all clear.
Just trying to breathe through it all.

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tkoss's picture
Replies 4
Last reply 2/4/2020 - 2:47am

I am getting infusion treatments , Opvido only, twice a month, stege 3C.

I am informed that I will get CT scan in 30 days.

In my case of 4 axial lymph nodes removed at the SLN site and none were revealed anywhere else in first round of CT, MRI and PET Scan.
Is a CT scan sufficient to judge effectiveness of treatment?

Or to put it differently if you needed a PET scan originally , why is a CT now sufficient?

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Steve33's picture
Replies 11
Last reply 2/24/2020 - 12:17pm

I’m stage 3B and began on Opdivo in Dec 2019. The blood test 1 month after first fusion showed my thyroid is producing too much T4F. My oncologist referred me to an endocrinologist who said we might have to switch agents if thyroid level doesn’t come down. Symptoms are loss of weight, rapid heart beating, and constantly feeling “on the edge”. I am on a beta blocker to reduce blood pressure ( I am an otherwise very healthy/fit 33 year old). Has anyone had similar issues with Opdivo? How was it managed?

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sks2019's picture
Replies 1
Last reply 2/20/2020 - 11:47am
Replies by: tschmith

Just read JuliefromSoCal update and thought I would share on whats going on and see if anyone has any experience with this and can provide any inputs.

so there are numerous tumors on the liver biggest one being 7 cm.. mom is being treated at UCSF.
GI oncologist discussed options
1) 70% liver removal which will still leave some small tumors on the left lobe and if the liver grows back fast so does the tumors as well so basically no benefit of going through this radical surgery.
2) RadioEmbolization - which is like injecting radiation beads next to the tumor to kill it. so its a one time procedure and then scans after 1 month. He also discussed if the melanoma specialist would want to add a chemo pill for 2 weeks to make it more effective.

I am very hopeful that this will kill the liver tumors and then maybe we can think about getting into the Xmab20717 trial from Xencor/

How do you folks feel about the plan and Does anyone has any experience with radioEmbolization to the liver ?

thanks

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Julie in SoCal's picture
Replies 24
Last reply 2/3/2020 - 6:13pm

Good Morning, friends!

I just want to give you a quick update with where I'm at.

On the Larry the Lung Cancer front: I am stable! Nothing's growing! Everything's shrinking -- even the mystery Hilar Meat (So he's now not much of a mystery and we're calling him Larry). I didn't have a PET scan this time, only a CT, but next PET, probably in March. We're predicting (fingers and toes crossed) show that everything is dead. The targeted therapy has worked. Yea!

On the Mel the Melanoma front: I had an MRI on my arm on Wed. Yes, that was 3.5 hours in a torpedo tube with crazy monkeys banging on the side. But it shows that I only have 3 blobs of mela-meat in my arm. This is very good news as we thought there might be more. Because there's only 3 of them, I'll have surgery next Tues to remove them. If there had been more, I'm not sure what we would have done. All I know is that waiting and seeing what they'll do is no good. Better to be done with them and to whack them again when they come back.

So this is the plan! Start the happy dancing!

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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Tsvetochka's picture
Replies 6
Last reply 2/9/2020 - 2:52am

My mouth has been hurting the past few days. I can't see any redness or specific sores. It just feels raw and almost burned everywhere. "Mouth sores" are on the list of Keytruda side effects, but what about this? Is it a side effect? And what can I do to deal with it?

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sj's picture
Replies 15
Last reply 1/30/2020 - 6:42pm

Apologies for all of the posts lately.

I provided my last update here: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

Here's some info from my pathology report(s):
Tumor Site: Skin of scalp and neck
Histologic Type: Melanoma arising from blue nevus
Maximum Tumor (Breslow) Thickness in Millimeters: At least: 8.00 Millimeters (mm)
Tumor Extent:
Macroscopic Satellite Nodule(s): Not identified
Ulceration: Not identified
Anatomic (Clark) Level: V (Melanoma invades subcutis)
Accessory Findings:
Mitotic Rate: None identified
Microsatellite(s): Not identified
Lymphovascular Invasion: Not identified
Neurotropism: Not identified
Tumor Regression: Not identified
Perineurial Invasion: Appreciated
LYMPH NODES:
Number of Lymph Nodes Involved: 0
Number of Lymph Nodes Examined: 2
Number of Sentinel Nodes Examined: 2
PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition):
Primary Tumor (pT): pT4a
Regional Lymph Nodes (pN): pN0

So, it was a large enough tumor that had invaded my nerves and the subcutaneous region. Obviously given its size, it's a cause for concern.

WLE & SNB were clear - no evidence of residual cellular blue nevus or melanoma, but as can be seen from Tex's history that doesn't necessarily matter. He had distant metastasis within 6 months, and he thinks it may have spread via his blood and left the lymph nodes alone. He also had melanoma in his scalp (as did I), but his tumor was a different size and I think it was ulcerated and it wasn't melanoma ex blue nevus like mine so technically different types of melanoma.

Now, I don't have intravascular invasion, and the nerves it invaded didn't go anywhere important, but despite the intravascular invasion the depth of the tumor just worries the hell out of me.

Up until now I've been dealing with a surgical oncologist and he is going to close me up on Friday. I have a 5cm x 5cm hole in my scalp, you could almost fit a hockey puck in there, and you can see my freaking skull. It's unnerving. I'm looking forward to it being closed.

Once he is done I've asked to be seen by the melanoma specialist at Duke - Dr. April Salama. Some of the great people on here have worked with her in the past.

I want her to establish a baseline PET scan, because the CT they did of my abdomen, while it said no evidence of metastasis it did note 3 lesions that were too small to classify - one of which hasn't changed since it was last identified (march of 2019), so I want these lesions monitored to see what they are.

My question really is - how does my approach sound to you? Should I be doing anything else? I'm going to leave it up to Dr. Salama to determine next steps after the baseline. I guess I'd really like to be put on some sort of immunotherapy just to be safe, or safer really, as a preventative. This melanoma had some nasty, nasty chromosomal aberrations. I don't think I'm BRAF positive, but I'll let her decide that as I'm not a pathologist. I'm assuming I should be put on Nivolumab (Op Divo).

I just don't want to do nothing and find out in a few months i have distant metastasis. If it can be prevented I would love to act now.

Thank you for listening/reading.

Thoughts?

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Bubbles's picture
Replies 9
Last reply 1/31/2020 - 4:35pm

I wish we were at a place that no melanoma patient needed to consider clinical trails as a treatment. However, despite the great strides made with the FDA approval of multiple targeted therapy and immunotherapy drugs starting in 2011, there are still those who need additional treatment options. I recently posted some of my thoughts on what clinical trial jargon means, how to gain access, and what is actually involved - on this forum in response to a poster's questions a while back. However, today, I put together a post on my blog that included those remarks as well as some research articles that I had been cogitating on over the past several months. If you are interested ~ http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/01/clinic...

Here's to the ratties! Best of luck to each of you! - celeste

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snootyusher's picture
Replies 6
Last reply 1/29/2020 - 11:20pm
Replies by: BillB, snootyusher, alysoy

Just got off the phone with my dermatologist. The report came back as possibly melanoma in situ. She confirmed she did a deep shave, getting some of the dermis. The main pathologist & a few others reviewed the biopsy and they agree there is "something" atypical in a pre-existing mole, but that they do not think it is anything more than in-situ.

The deep shave did not get the entire mole apparently, so the next step is a wide excision to get clear margins. She said that there's no need to check the lymph nodes. In my prior post I noted that they're very swollen, but after doing more research I'm wondering if they're muscle knots/trigger points. I really can't tell.

My derm was trained at Memorial Sloan Kettering in Mohs Surgery, so she is certainly well-qualified to perform the WLE, but I'm considering going to Sloan anyway (if they'll take me - it's not sure if a possible melanoma-in-situ will qualify me for their services).

Does anyone know if Sloan would take me? If I go with my derm, I can get this done tomorrow. Sloan will need some time to get the samples & review themselves - and even then they might not take me.

Also just want to say I am very grateful to those who replied to my other post. Even though I didn't get a 100% clean diagnosis - and I still have more to do - I feel at least some sense of relief.

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