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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Melanoma Peeps! Just received good scan results after 8 cycles (started in January) of intralesional injections + Pembro. Two of the four head and neck tumors have been injected with IL-12 and tavokinogene telseplasmid (?) and received electroporation every 6 weeks, and I’ve had Pembro infusions every three weeks. The target and by-stander lesions on my scalp, both palpable, are gone. Here's the scan report for the target lesion and bystander lesions on my neck, both decreasing:
- Right level 5A node: 0.9 cm in short axis (series 502, image 129), previously 1.1 cm. Current SUV max 9.29, previously 12.8.
- Right level 2B/3 node: 4 mm (series 502, image 152), previously 9 mm. Current SUV max 5.3, previously 9.3.

Trial info: https://immuno-oncologynews.com/2018/11/30/tavo-reverses-resistance-pd-1...
I'm cautiously optimistic. Hoping this post can help someone else.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

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MelanomaMike's picture
Replies 1
Last reply 7/18/2019 - 9:13pm
Replies by: sandyd77

Hi guys, keepin ya posted on the latest, Dr. Hamids "coordinator" Jasmin just called me! So nice, she gave me their Tax Id number for the referral, she said either my Primary Dr or Oncologist can fill it out,...Hurdle #1: My Primary Doc is out til July 22 and the nurse goes on to say only my "treating" physician can do it, makes sense but AAARRGGHH!.. HURDLE #2 : So, and i already knew this yesterday, my Oncologist will be out till July 29th and another Onco is covering her, i just called and left a message with all Dr. Hamids info Tax Id, location etc so, lets see if a "Covering " oncologist will honor my referral !!l, look at my chart! He or she will see im desperate!! And times a ticking!..cross yer fingers peeps, i might be treated by one of many a best Mel Docs!

Im Melanoma and my host is Mike..

www.covvha.net

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Has anyone on Nivolumab ended up with lung issues caused by the treatment? I am 12 treatments in out of 26 and the programme has just been paused while they investigate my lungs. A CT scan and follow-up EBUS showed granuloma in my lungs since the end of April but now I have chest pain and the latest round of test show Interstitial septal thickening. I am worried on two fronts; first, the lungs won't recover and may even get worse, second that they don't resume the Nivolumab. Has anyone on Nivo experienced lung side effects?
Thanks

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I had an excision on an area that was considered atypical cells from a mole. I went to a plastic surgeon and he removed what he “Hope to believe I took it all out” just got back pathology report 3 weeks after biopsy because it was reviewed by two dermatopathologist. The diagnosis came back as advanced melanocytic neoplasm. The margins were not clear peripherally or as well as deep. I have to go back next week to have more removed. I have been assured that this is not melanoma in any way but the report also states that the excision may not be representative of the entire clinical lesion. Can anyone help me understand? I’ve already had basal and squamous cell carcinoma several times. I also have a lump a golfball size just above my armpit. My understanding is that melanoma travels first to the sentinel lymph nodes. My dermatologist says there’s no way the two are connected.

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Here are a few various topics for stage 4 folks on new trials, and various situation that stage 4 folk are dealing with in melanoma including injectables and novel agents in clinical trials. https://www.youtube.com/watch?v=QLF8RJgd2Y4 https://www.youtube.com/watch?v=J-19Vk_kA0k https://www.youtube.com/watch?v=Qc1D2nKcbJg

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Lea345's picture
Replies 5
Last reply 7/18/2019 - 6:17pm

My 68 year old father was diagnosed with stage 4 back in April. He had 3 brain Mets and it had also spread to his lungs and lymph nodes. Since then, he’s had 2 srs treatments, a round of keytruda, and then switched to ipi/nivo because the cancer was quite aggressive and seemed to be spreading in his brain. (We’re currently up to 9.) He’s had two rounds of ipi/nivo and is due for his third soon.

But over the past two months, he’s seen a huge decline in quality of life. And we’re just not sure if they’re side effects from the immunotherapy or if the cancer has spread even more. He’s so weak now and has to use two canes and even a wheelchair. And he can no longer make it up stairs on his own. He struggles with standing and says it’s mostly his thighs that hurt. He did originally have some slurring and dropping of his mouth, but that seems to have cleared up. His feet have swollen so much that he can’t wear any shoes. He moves so slowly because he’s so weak.

I guess I’m just looking for some reassurance that things can get better. He’s starting to go through a dark period. He was always so active before. He and my mom own an amazing garden center and a Christmas tree farm and it was unusual for them to walk anything less than 10 miles each day. Before all this cancer stuff happened, his cardiologist was extremely impressed with his lifestyle and general health and well being. So suddenly being so weak is taking a huge mental and physical toll on him. But now he’s lost all independence and is starting not to eat properly. I think he’s getting depressed but he’s not ready to give up and I need some good news to give him. It’s hard to keep going when it all seems so bad.

Has anyone managed to get to NED with ipi/nivo and brain Mets when their symptoms or side effects were this awful? We need some hope and I need some good news for him. We’re not ready to lose him yet. And the whole family is having a bad couple of days.

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Jewel's picture
Replies 5
Last reply 7/17/2019 - 11:58pm

Hi,

Unfortunately after a 4 year response from Yervoy my husband had melanoma show up in a inguinal lymph node.. They are talking about removing lymph node and a couple around it and then starting the combo. They are talking starting the 4 doses of IPI and then switching to once a month Nivo. The research I've read said this is not the way to go. My husband tolerated IPI thankfully with very few side effects. I'm confused and just want to be armored with all the knowledge I can to approach our Oncologist.
Thank you for any help what so ever.

Jewel

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sister of patient's picture
Replies 5
Last reply 7/18/2019 - 2:19pm

Hi Folks,

I've been intending to post for a couple of weeks now but, as I've experienced before, it's hard to deliver our own great news when others are suffering and fighting for their lives. To all the newly diagnosed, those experiencing recurrence or treatment failure, we feel your devastation!! Please know that our hearts, best thoughts and wishes go out to you!!

My sister, Leisa, has just passed the "unofficial" 2-year NED mark - her first clear scan was in July 2017, so that is what we celebrate and we're taking off next week for a girls' road trip, where, somewhere along the way, we will be stopping to enjoy a new F.U. cancer cake :D

Despite my bit of levity here, we do realize that one is only clear scan to scan and we thank the gods that be every day that Leisa is still here, alive, NED and living her life. I'm still here on this board because my biggest fear for her now is recurrence and I want to be armed and ready if that day should come (I think I actually sweat her scans more than she does). As a complete responder though, and now two years without recurrence, I believe she has reached a new plateau where the survival stats are even more encouraging.

I won't go into detail (it's all in the profile) but suffice to say that targeted treatment, radiation and immunotherapy did the total job here (no surgery after CLND) and eradicated a demon that had taken over her spine, other bones, lungs, liver, spleen, pancreas, other soft tissue areas and infiltrated her brain with an onslaught of mets (hundreds of micro-mets).

Her scan schedule has eased a bit now - brain MRIs and app't.s with radio-onc are at 6 month intervals, thoracic CTs and app't.s with mel onc are now at 4 mo.s apart and will move to 6 at the end of this year, with derm app't.s at the off-set every 6 mos. She's not without permanent damage and is dealing with a number of smaller issues, some just bothersome, some quite painful but I can tell you with all sincerity, she considers them a trade-off she would make again if necessary!!!!

Peace and love to all!!!

Barb

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murnaloo's picture
Replies 5
Last reply 7/18/2019 - 7:22pm

In 2016 I had stage 1b melanoma on my inner right calf. Just yesterday when I was at the dentist I was showing her the scar from my WLE because it has healed to the point of being almost invisible.

Tonight I got in the shower after going for a run and about an inch from the WLE scar there is a sizable red spot. It's not a pimple (it's too big for that any way) and is not a scratch or mosquito bite. I am not aware of pinching my calf in a way that would have resulted in a blood blister, plus it's in a somewhat awkward place to have done that.

A Google search and a search of this forum turns up vague statements like "melanoma can appear suddenly." Does that mean overnight or in a matter of hours?

I wrestle with anxiety since the melanoma diagnosis (I have had systemic lupus since I was 12, so had not been in the sun since 1982, so the diagnosis shocked me).

I'd like to wait a week and see if there are any changes, but the fact that it popped up so quickly worries me -- if it IS melanoma and it's moving that fast, can I wait a week?

Can melanoma show up that suddenly?

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MelanomaMike's picture
Replies 4
Last reply 7/18/2019 - 2:15pm

Hi guys, saw my primary Onco this morning, nothin to really talk about but to wait on Dr Jang in Riverside Kaiser, most likely ill do IL-2 Proleukin inpatient thing, i see him Aug 15th, thought it would sooner but ill take what i can get, i filled out a short form to see Dr. Hamid as a consult, lets pray i get in to talk 2 him, thats the 23rd (July)...
Heres my results, sizes,
The Sigmoid is positive Melanoma 1.5 x 0.7 x 0.3cm
Aggregate tan tissue....

My right butt cheek (skeletal muscle) is melanoma at
0.1 x 0.3 cm in length..with rare atypical cells present.
So, i already figured the butt test was Mel, reading this flew right over my head haha, its ok, im working on Plan e! Love ya guys...

Im Melanoma and my host is Mike..

www.covvha.net

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Small prostective trial of 35 melanoma patients with various types of melanoma including uveal, acral, mucosal, occult and cutaneous getting ipi+nivo were studied for biomarkers that might predict response to check point inhibitors. This is a small trial done in Germany but shows what the future might look like for melanoma patients. https://jitc.biomedcentral.com/articles/10.1186/s40425-019-0659-0

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Good morning to you all,

My husband Ken was diagnosed with Stage 3c melanoma in 2010. All his Melanoma has been in his Lymph nodes. Started in his LEFT inguinal nodes 3/19 positive. Move to late 2014 recurrance in Left iliac nodes 2 nodes confirmed positive. Started IPI in Nov 14 finished Feb 15, blessed with a 4 year remission. Recent scan showed lymph node light up in Right inguinal region. Needle biopsy confirmed Melanoma, I know we shouldn't be surprised but we were. Bladder & Prostate cancer also thru themselves in the mix in the last 18 months. Thankfully they remain NED. A pet scan is scheduled and determining what the results are our next step is taking the affected node and a couple surrounding nodes out and start the IPI/NIVO combo. It's been awhile since we have been on here and I'm wondering if that is still my husband's best option. He is also being tested for the Braf gene again. Amy and all help and suggestions would be appreciated.

Thank you, Jewel

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I had my wide excision and sentinel node biopsy today. Glad to have that behind me. The radioactive tracer went to both sides of axillary nodes so they took nodes from both sides. I won't have results for a week or so but I
did read the surgeon's report on my chart online tonight. She removed several on the left side and the report said "hot" and blue, which I understand that those
nodes had the radioactive tracer and the blue dye. On the right side, she discussed 3 nodes. The first one was palpable and blue, the second one "hot" and not blue and the third one was blue, palpable and abnormal-looking.
Does "palpable" and "abnormal looking" always mean that there is melanoma in 1 and 3 or could it just be an infection of some kind? Now I'm really worried that these 2 nodes are positive for melanoma. When she felt lymph nodes during my consultation, she didn't feel anything... What do you think?
Sharon

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juliaT's picture
Replies 3
Last reply 7/17/2019 - 9:22am
Replies by: juliaT, Bubbles, Carlsbad317

Hey guys, before I started my nivo adjuvant therapy for fully resected stage 4 melanoma at the end of last year I had read various medical journal articles stating that it could be very beneficial to take probiotics while being on immunotherapy. Encouraged by the findings I started taking probiotics to boost my gut microbes.

Fast forward to today, and I came across various articles stating that over the counter probiotics could actually do more harm than good. In some cases they could lower the response to treatment by up to 70%.

https://www.news-medical.net/news/20190405/Patients-on-immunotherapies-s...

Don't really know what to make of it at this stage. Should everybody taking probiotics stop using them? I've been taking probiotics since I started my nivo treatment at the end of last year and so far all my scans were clear with no sign of disease. The only side effect I've been getting is a bit of fatigue so thought nivo+probiotics are working quite well together. Have 10 more, bi-weekly treatments left at this point. (12 months adjuvant therapy) considering stopping the probiotics for the remainder of the treatment. What's your experience/advice on probiotics and nivolumab?

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MelanomaMike's picture
Replies 8
Last reply 7/18/2019 - 11:46am

Hi yall, well, Dr. Rodriguez got back with me a little while ago, hes in agreement with my current stoppage of Treatment, he called a sugery " Useless" at this point..
He did say to wait for Dr Jang at Kaiser Riverside to get back to me, a referral is in to him for possible clinical trials and or chemotherapy....
Damn! Like I said to brother Ed W., i wanted Rodriguez to kinda take me under his wing, hell, with him rubbin' elbows with Dr. Hamid, them two would have been a great firing sqaud! I cant win anymore, its obvious...so, lets see what Dr. Jang has to offer.....aaarrhghh!

Im Melanoma and my host is Mike..

www.covvha.net

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