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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Beverly's picture
Replies 4
Last reply 7/22/2019 - 4:18pm

Bubbles, et al...

I posted a topic on 7/19/19 on my Stage 3B situation regarding questions/thoughts on immunotherapy months out from surgery. I received some responses from some wonderful folks so far like MelanomaMike, Mark_DC, and DoubleTT. Thanks so much to each of you! My apologies in advance if protocol is to not re-post on the same topic. I would love to hear from Bubbles/Celeste, Ed, and any others who have been on this Board. I mention Bubbles/Celeste and Ed specifically only because I am most familiar with their story and input for so long, fighting the fight for so long, and so selflessly continuing to give and help others. I, by absolutely no means, want to seem like I trivialize all of the other wonderful people on this forum. I would love to hear from more brave warriors.

If you wish, you may go back and read the original post on 7/19 for more details and questions. But in a nutshell, I have Crohn's (DX 3/2016) and I am exactly 5 months out from surgical re-section to remove an in-transit melanoma on lower right back (no lymph nodes involved at time of PET scan in March). But Stage 3B because of being In Transit. First melanoma DX 12/2013 (surgery 1/2014). Tested 3/2019 and BRAF positive. Started Taf/Mek combo in late April, ended up in hospital for one week after about 3-ish weeks on the meds. Had to stop the meds right before hospitalization. While in hospital, was told need Crohn's surgery. Went home for a week. Back in hospital on June 3 for that surgery and in the hospital for a week. (Crohn's surgery was already in my future, but not anticipated for about another year). Anyway, they did a temporary stoma. The stoma was put in place to delay recurrence of the Crohn's around the area of the intestine that was removed and hopefully allow me to do immunotherapy without the meds causing problems with that. My oncologist and Crohn's doctor and surgeon had consulted on this previously. However, I needed my intestines to heal for at least 4 weeks before I could start any immunotherapy. Fast forward to now about 6 weeks out from Chrohn's surgery. Met with oncologist on 7/10 and she could not say whether immunotherapy would provide any benefit or not this far out (which is 5 months+) since all the studies/trials were at 12 weeks of surgery. She tried for another PET scan to make sure still no cancer and have baseline for starting immunotherapy if we went that route. PET was scheduled tomorrow but insurance denied. No surprise there. Not sure yet if she will try Peer to Peer or put in for a CT instead. I've been through this tupe of thing before and I know a peer to peer would not help. So likely a CT. Anyway, by the time a CT is done and trying to get insurance approval, etc. for immunotherapy, it could potentially be 6 months since surgery before starting any immunotherapy.

Should I try it at this delayed timeline? Could there be benefit? Could 2.5 weeks of Taf/Mek combo eradicated anything if there were microscopic cells floating around? Am I at a higher risk of severe side effects because I had them on the Taf/Mek combo? What would you do if you were me?

I want to try because I'm scared to just "watch and wait" but I'm also scared of potential side affects given my history with the Taf/Mek. If the melanoma comes back, it could be at the next Stage (this is my 2nd time with it - albeit 5 years apart) so that is concerning.

Also to consider is the whole original reason behind the temporary stoma was in anticipation of immunotherapy. If I don't do immuno, then if I chose, I could have reversal surgery to reconnect intestines and get rid of stoma as early as October. If I do immunotherapy, I would need to wait until a time period after completion of immunotherapy. While I absolutely do not like having this stoma, I would rather have that than the melanoma obviously. So I shouldn't muddy the waters about the stoma and just focus on immunotherapy or NOT at 6 months out from melanoma surgery.

This is so overwhelming. I know there are many others currently struggling or have struggled more than I am, and I pray for each and every person who is fighting the fight. Thank you so much for reading my long story. Sorry it wasn't a "nutshell" !

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Happygal's picture
Replies 1
Last reply 7/22/2019 - 9:45am
Replies by: Bubbles

I just recently finished WBRT. I have been having a lot of "glitches " I forget to put down whatever is in my hands and try to do things with it in my hands. I forget to take off my clothes and try to put on more clothes. I forget to flush the toilet, which is a pet peeve.
Does anyone else that has gone thru WBRT have any information on this?

Thank you,
Tyais

Tyais

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Within the last couple days I noticed a spot hurting on my foot after showing. I took a look and one of the moles i've had for years had changed -- not good. Now its the weekend so of course no dermatologist is open, so that doesn't help much. Needless to say, this has sent my anxiety through the rough to the point where I took my first personal sick day at work. The spot is still relatively small, around 3mm but almost vaguely looks like it has skin color "scar" tissue creeping away from it. The spot also still feels pretty thin when I run my finger over it (hard to measure but i'd feel confident saying its raised less than 1mm). My last full skin exam was a bit over a year ago and the dermatologist made no mention or notes of that mole (but I know he did look at it at the time). Here is a picture of the spot https://i.imgur.com/1KCl9cm.jpg As a side note, I can't find any unusual bumps that would indicate a swollen lymph node (though my knowledge on where lymph nodes would be in the foot is minimal).

I think I worry the most as i've had some other symptoms over the last two years, particularly abdominal pain. But I had an abdominal CT scan, ultra sound, and colonoscopy all which showed nothing unusual. So its also probably that the two are unrelated entirely. my last blood work about a year ago came back pretty good (only low vit D, but as somebody who works late/overnight this isn't too unexpected...). At this point its hard to distinguish anxiety from actually related.

I know the people on this board are mostly other patients and not qualified to "diagnose" or anything of the likes, but many of you have had experiences and I'd prefer honest opinions and advice. I live in the norcal bay area, so if things turn for the worse, does anybody have familiarity with facilities to recommend around here? I'm still pretty young being only 27, but I lost my mom to colon cancer less than two years ago and quite frankly pretty spooked. I'm hoping to squeeze in an appointment on Monday if I can though. I'll certainly post an update once I have those results....

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MarkR's picture
Replies 5
Last reply 7/22/2019 - 2:32pm
Replies by: MarkR, Mark_DC, ed williams, lkb

I’ve just got back from a weekend camping with a very red face.
I spent Saturday outside on a fairly cloudy day in England in the type of weather where I wouldn’t normally bother with suntan lotion. Part way through the day I felt my face was warm and my wife commented about it so suntan lotion applied by too late. The reason I mention this is having looked at my face the redness is only in certain places (forehead, nose and part of cheeks) and the rest of my face is the normal colour and appear patchy. When I mentioned this to my wife she said that she thought my skin had looked a bit patchy for a few months and thought I had previously applied suntan lotion poorly causing this patchiness!!! We were with some friends one of which gets sunburn if she looks at a candle for too long so the sunburn iI now have seems a bit unusual.

I was wondering if this might be the start of Vitiligo and wondered how this started for other people?? As best i can tell this is only on my face - i have had a few grey eyebrow hairs recently but am going grey anyway so don’t know if that’s relevant or not
Thanks
Mark

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Carlsbad317's picture
Replies 4
Last reply 7/21/2019 - 7:11pm
Replies by: Carlsbad317, Bubbles

The last Ipi/Nivo infusion was June 7th, last radiation was the first week in July since then gradually have felt better, less trips to the restroom, firming stools, not as cold and not shaking, less swelling and more energy! Almost feeling among the living again! Woke up two days ago noticed the swelling and all symptoms/side effects have returned just like I had a treatment a week ago.
Anyone else experiencing this and an explanation? In my mind I am thinking since the treatment continues to work - it is the body fighting or sound something more to fight so it has kicked in...
Thanks for sharing.

Hanlon

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Hello,
My mother got diagnosed February 2018 with stage 3 melanoma. It began on her heel and traveled up to her inner thigh. She got a huge chunk of her heel removed and she got many lymph nodes on her inner thigh and upper leg removed through surgery. As she was recovering and all seemed okay, a scan showed there was some melanoma on her leg still. She underwent another surgery for that and shortly after began radiation therapy for her leg. After she finished that, she started immunotherapy. My mom was continuing her recovery and continuing her biweekly therapy sessions up until a couple of weeks ago. Unfortunately the melanoma came back on her heel and another scan showed it traveled to her abdomen area. Around the same time my mom started to notice pimple like marks on her leg spreading and growing. It wasn’t until her doctor did a biopsy and confirmed it was melanoma as well. She just got surgery on Thursday to remove the lymph nodes by her abdomen. Now we will wait 2 weeks until she heels so the doctor can set up a plan of care to target her heel and her leg. The concern is that her pimple like marks are growing more and more and it’s difficult to treat as they are under the skin and too small to appear on a scan.
My mom got very unlucky as we thought everything seemed it was going well.
I guess what I want is reassurance that there’s people out there who have been through this and survived. Is there anyone out there who had something so complicated as this? This is the scariest situation I’ve been in and I’m hopeful my mom will get through this. It’s just a very difficult and upsetting. I just need to hear other stories to feel stronger. It’s been a rough ride.

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MelanomaMike's picture
Replies 13
Last reply 7/22/2019 - 3:47pm

Well, Hurdle # 3, Referral Denied and i get the reason why, the Review Board guy i spoke with said to me because my Onco didnt file it and that " I" did it through Kaisers Member Services, it doesnt hold weight without a treating physician co-signing it, i have a Plan C though, since i stopped working, (i had Kaiser thru my job since 2003) when i left, i signed up for our Medi-Cal program "LA Care" (Calif's State/Fed health program) wich had Kaiser and a few other health providers, i obviously chose Kaiser so i could keep my same account, team and treatment. According to Dr. Hamids coordinator he takes straight Medi-Cal so, worst that could happen, i can stop Kaiser and ask to be on "straight" Medi-Cal, the only thing is, to transfer back could take time, maybe i can get it expedited cuz of my health. Ill call Monday morning to find out my options, i really want Dr. Hamid to treat me! That other doctor, Dr. Jang (the Kaiser Onco im to consult with Aug 15th) is not a Mel spc. and hes to far away if im to have supportive visits during "his" inpatient treatment, that alone is a deal breaker, i wanna feel good about inpatient treatment!!!..Am i being to picky at a crucial time? Im just so confused at this point, it makes me sick....any advice or knowledge about this would be appreciated ...
Hope ya all are having a relaxed weekend!

Im Melanoma and my host is Mike..

www.covvha.net

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murnaloo's picture
Replies 4
Last reply 7/20/2019 - 10:06pm
Replies by: maryb-z, BillB, Linny, lkb

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 1
Last reply 7/21/2019 - 10:08am
Replies by: 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 7
Last reply 7/22/2019 - 11:22am

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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