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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murnaloo's picture
Replies 9
Last reply 7/31/2019 - 10:51am

Hi all,

I've searched this forum and couldn't find anything posted on this topic, so apologies if I overlooked something.

I have been using sunscreen since 1982, when I was diagnosed with lupus. The pharmacy used to have to special order it in SPF45 because you just couldn't find such sunscreens - but you could find loads of sun tanning oils!

A melanoma diagnosis in 2016 came as a bit of a shock, but did make me realize I'd become rather lax about coating myself in sunscreen, which I now do religiously. However, EVERYTHING I touch is stained with sunscreen. This includes my car seat, my purse, my shoes, our kitchen table.

Are there any high-quality, effective sunscreens out there that don't stain?

Or, are there any cleaners that get sunscreen off of leather, wood, etc.?

We rented a car last month for a long weekend. I wore shorts and sunscreen the whole time. When we turned the car in, the passenger seat wher I sat was a whole shade lighter thanks to the white sunscreen stains.

Thanks all!

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Hanaln's picture
Replies 2
Last reply 7/23/2019 - 2:11pm
Replies by: Ellie_82, ed williams

Can anyone put this into lay mans terms for me? My husband was diagnosed with stage 4 metastatic melanoma in April and is doing well on Keytruda so far. But I’d like to learn more about what his initial pathology report is saying. Thanks in advance!

MICROSCOPIC EXAMINATION: -
Sections demonstrate a well delineated dermal and subcutaneous proliferation of severely atypical epithelioid melanocytes with numerous mitotic figures and focal melanin pigment. The tumor is strongly positive for a panmelanocytic cocktail (HMB-45, Melan-A, and Tyrosinase). The tissue edges appear clear in the plane of sections examined.

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cjm22's picture
Replies 7
Last reply 7/22/2019 - 2:22pm

Hi everyone,

My sweetie died on July 14, 2019, just two weeks after we were told there weren't any more treatment options for him. He was not in any pain, and his whole family was able to come say goodbye. We were all with him when he passed.

I haven't talked much about our personal details because I wanted to preserve his privacy while he was alive. But now it's important to me that everybody gets to see just what an amazing person my husband was.

We have a memorial page for him hosted at the University of British Columbia, where Jordan completed his PhD and a postdoctoral fellowship. (Also where he met me!!)

You can read a little more about him here: https://memorial.support.ubc.ca/jordan-burke/

Thanks, everyone, for all of your encouragement and support over the past year and a half of his illness. You guys were so great at knowing when to cheerlead and stay positive, and when to be sad with me when things stopped looking up. I found this board immensely helpful. One time a doctor assumed I was a fellow medical professional, because I was so informed about treatment options, side effects and medications!

I won't be posting or checking this board any more, but I wish everybody GOOD LUCK in their journey with this horrific disease -- whether you're a survivor, current patient, caregiver, or friend. Don't let Jordan's story get you down -- a lot of people make it a long time with this disease these days. And even though Jordan's life was way too short, he lived A LOT during his 36 years! (Trust me, a lot of his stories did NOT make it into the formal memorial page... ha!)

Thanks again,
Caleigh

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Edwin's picture
Replies 6
Last reply 7/21/2019 - 12:50pm

My July 15 PET/CT scan shows improvement. In March 2016 I had melanoma in many bones. That bone cancer is gone. In April 2018 I had radiation to a tumor under my left jaw. I began immunotherapy in November 2015. If my melanoma does not progress, my oncologist plans to stop immunotherapy in May 2020 when I will have received immunotherapy for 4 1/2 years and have been stable or better for 2 years.

from PET scan 7/15/2019:

Head/Neck: There is a small focus of mildly increased uptake again noted in the left parapharyngeal region. This is less intense when compared to the previous examination of 3/6/2019. At that time the peak SUV was 3.2 and now it is 2.6. This corresponds to what was thought to be a necrotic left parapharyngeal lymph node on an MRI dated 5/3/2018. No other areas of abnormal uptake are seen.

Skeletal: No abnormal uptake is seen. There are scattered areas of sclerosis in the spine and ribs unchanged the previous examination of 3/6/2019 and likely represent treated metastatic disease.

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Suzana65's picture
Replies 7
Last reply 7/20/2019 - 3:01pm
Replies by: Suzana65, Linny, lkb, Edwin

Hi everyone.
My update is as follows. Had a PET scan on Wednesday. Negative. Thank you God for this blessing. Saw oncologist today. She does not want to give me any therapy. Just US very 3 months and PET scans every 6. She claims that since I had only one positive node with less than 1 mm tumor (stage IIIa) I am not a candidate for adjuvant therapy. She claims it’s nothing to do with my autoimmune. I will be seeing dr. Paul Chapman at Sloan Kettering on Monday anyway. I guess I’ll hear what he has to say. My question is this.... I see that almost everyone who was stage 3 at diagnosis without any treatment to follow progressed to stage 4. I'm scared to leave it just like this. Let me know what you think.

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Beverly's picture
Replies 9
Last reply 7/25/2019 - 7:17pm

I'm looking for some thoughts (or experience) on my situation...I apologize in advance for the "novel" below. The last paragraph get's to the real question.

January 2014 was told Stage 2, had WLE and 2 SLN biopsy with 1 having a couple tiny possible mel cells. No further treatment recommend/available. 3 month skin exams first few years, then every 6 months. No scans.
Then Dec 2018 had MRI for Crohn's Disease that picked up tumor lower right flank (same area as original melanoma). This tumor was supposedly a pillar cyst per dermatologist I saw when I first noticed the lump back in August 2018. Biopsy January 2019 showed deposits of melanoma. This was an In-Transit Melanoma, sometimes referred to or similar in prognosis as Satellite melanoma. Had PET scan which was clean and WLE surgery February 22. This time I was at Stage 3B. And I was also told my original Melanoma in January 2014 was actually Stage 3 and not Stage 2 after current docs looked at old path reports and actual old path slides. Tested and I was BRAF positive and eligible for Taflinar & Mekinist combo as adjuvant OR could opt for immunotherapy. However, with my Crohn's history the local oncologist at Blue Ridge Cancer Care preferred Targeted Therapy for the BRAF in lieu of Keytruda Immunotherapy due to my auto-immune Crohn's and less chance of Taf/Mek causing problem with Crohn's. over immunotherapy. I also saw specialist Dr. Salamas at Duke for 2nd opinion and she wouldn't do either adjuvant treatment and preferred wait and watch approach because of possible side effects of either treatment with my Crohn's. I went back to local oncologist and ended up starting BRAF inhibitors Taf/Mek combo late April 2019 and within about 10 days or so started having fever and chills that kept rising over course of a few days with OTC not helping and extreme shaking. Ended up in hospital for a week (ICU first 3 days) with all sorts of serious side affects of increasing fever to 105, severe dehydration, liver levels through the roof, very low blood pressure, intestinal inflammation including exacerbation of Crohn's, etc. Docs ended up scheduling Crohn's surgery a week after I was released from hospital as a result of the Taf/Mek side affects. (removed about 8 or 9 inches small intestine). That surgery was June 3. Was going to end up needing Crohn's surgery in a year or so, but medication pushed that plan ahead. Oncologist wanted to try the immunotherapy next, once I recovered from Crohn's surgery. However, time was ticking due to having to stop the Taf/Mek after 2 1/2 weeks or sick sick at home for a week, then in hospital for a week, then at home recovering for another week before being back in hospital for yet another week for Crohn's surgery, to then at home recovering for 4 weeks and could be on no adjuvant therapy. Surgeon said I needed at least 4 weeks after surgery before starting immunotherapy to allow enough healing. Fast forward to first week in July (5 weeks out from surgery) I saw my oncologist and now to the question:

The BIG question is whether adjuvant immunotherapy will have any benefit at all since were are 5 months out since surgery to remove the melanoma? All trials and studies on Stage 3 adjuvant therapy immunotherapy was within 12 weeks of surgical re-section. Doc suggests it likely won't have any benefit based on that. But wants me to be comfortable in decision. This is where I am at - Do I try immunotherapy and hope no serious side affects and further hope there may be benefit (of which no one can say it has even a chance this far out from surgery). OR do I wait, do periodic scans and pray? Doc is trying to get insurance to approve another PET scan since it has been about 3 to 4 months since last one and - I'm sure they will deny. Worse case then get a CT to make sure things still look NED. And when get those results decide whether to "try" immunotherapy at 5 to 6 months out from my surgery date. I'm worried I'll waste time and have bad side effects on immunotherapy for no potential benefit. But I'm also worried to not do anything And worried if it comes back a 3rd time, I won't be so lucky at it will come back at the next Stage. I'm going to have to make a decision in the next week . And is there any possibility that the TAF/MEK combo I was taking for 2.5 to 3 weeks could have done anything?

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Replies by: lkb

Dr. Davies cover a host of melanoma research going on at MD Anderson, including Brain, Microbiome, diet and Energy systems used by cancer. It is part of Aim at Melanoma series with The Angeles Clinic of Dr. Omid Hamid. On the right hand side of the video link are other melanoma topics and presentations by Dr. Omid Hamid and other specialists including surgery, neo adjuvant, new clinical trials etc. https://www.youtube.com/watch?v=wwup6wOizdo&list=PLOnM_erAQqIBK-ASSZujKr...

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dbJoe's picture
Replies 3
Last reply 7/19/2019 - 6:13pm
Replies by: MelanomaMike, Bubbles

Hey, I'm not trolling or trying to stir up controversy. I searched 200 pages of google results for "Biden Cancer Initiative Accomplishments", and I found nothing except requests for donations along with plans to "start a conversation" about "sharing data." Am I missing something? This is not political, I am genuinely curious.

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Jewel's picture
Replies 5
Last reply 7/19/2019 - 8:33pm
Replies by: Jewel, ed williams, Bubbles

Hello Celeste,
We have talked a few times in the past and I've always admired your drive to find the latest and greatest in the world of Melanoma. I was hoping to get your 2 cents on my husband's recent reccurance. Ken was originally diagnosed with melanoma on his L calf in Nov 2010. Recurrance in L inguinal nodes 3/19 positive Sept 2011. Went to Sloan to try to get into trial no luck. Went until Aug 2014 until recurrance in L Illiac nodes 2 positive Started Yervoy Nov 2014 3mg ended in Feb 2015 thankfully minimum side effects. We totally thought we might have had this kicked when a recent scan showed a Lymph node lite up in his R inguinal nodes. Biopsy confirmed Melanoma. Totally crushed. Pet Scan scheduled next week. Appointment with Surgeon scheduled after that. Ken does not want a full lymph node dissection done this time due to mild lymphedema. Just wants affected node taken out. They are going to test for the Braf gene as well. They are talking about the Yervoy/Nivo combo for Ken. Obviously are heads are spinning and I know you don't have a magic ball but I would love your opinion. They have also talked the possibility of radiation since all of Ken's melanoma has been in his Lymph nodes. I heard they can give you a dose of radiation while your in surgery? Oh I almost forgot in the last year and a half he was also diagnosed with TWO other cancers prostate/bladder. Thankfully NED at the moment. Needless to say we've been busy. Would love your thoughts. Thank you so much

Jewel & Ken

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lkb's picture
Replies 14
Last reply 7/26/2019 - 1:33am

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 6
Last reply 7/19/2019 - 11:05pm

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!

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Replies by: Bubbles, Tracyyy

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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Jana's picture
Replies 2
Last reply 7/19/2019 - 5:09pm
Replies by: Jana, Bubbles

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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