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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sing123's picture
Replies 3
Last reply 8/29/2020 - 3:13am
Replies by: MelMel, sing123

Hi dear friends, heading into the clinic for my first infusion, I thought of how lucky I'd be to coast that first month without side effects, as I'd read is pretty often the case. Boy was I wrong about me! Side effects hit second day. Luckily so far they resolve pretty quickly. Now I have a skin rash. Has anyone has this side effect on treatment and how did you manage with any natural options? I am on Triamcinolone (SP?) and Benadryl. I also continue to take my Dexamethasone for swelling from zapped brain mets, but only at 2 mg. Am hoping that I won't have to go on a stronger one. And also, have you heard that skin rash may be a sign of treatment effectiveness? I sure hope so!

Very best to you all!

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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Fortysomething's picture
Replies 6
Last reply 8/28/2020 - 6:19pm

Good morning
Had a call offering a sentinel lymph node biopsy,. Already have had the wle , but couldn’t do slnb due to covid-19. Wle was 3months ago and had set my mind to just see what happens.
Decided to have it done but fear of what happens next as kicked back in, has anyone else had a delayed slnb.

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Lori0529's picture
Replies 1
Last reply 8/28/2020 - 3:08pm
Replies by: Sdmotorcop

HIstory:

October 2007
Lower Right leg Melanoma in situ
November 2015
Upper right leg/groin
Skin tag became dark
“mature melanoma”
Breslow Thickness – 2.85 mm
Clark’s Level: Four
Ulceration: Present
Wide Excision
Sentinel Node Biopsy - Negative
February 2020
Enlarged groin lymph node had appeared on follow up CT Scan
Biopsy confirmed Melanoma
Treatment plan: Immunotherapy followed by surgery

2/17/2020
Opdivo/Yervoy Round 1
3/9/2020
Opdivo/Yervoy Round 2
3/30/2020
Opdivo/Yervoy Round 3 scheduled
Did not take place due to liver numbers
AST 115, ALT 257
Steroids prescribed (Prednisone 10 mg taper for 24 days ending April 24)
4/14/20
Received NEO Genomics report that confirmed BRAF V600e mutation
4/20/2020
Liver numbers had improved to AST 19, ALT 28
Opdivo Only infusion
5/4/2020
Opdivo Only scheduled
Did not take place due to high liver numbers again
AST 217, ALT 482
Steroids prescribed (Prednisone 10 mg taper for 33 days ending June 5)
Surgery scheduled
6/11/2020
SURGERY
Complete Superficial Inguinal Dissection (all lymph nodes in right groin removed)
6/29/2020
Post Op Appointment
Pathology report indicated 9 lymph nodes were removed -- 1 of the 9 positive for Melanoma
Treatment plan is now "surveillance" that includes Brain MRI and CT scans every 3 months

Have recovered well from the surgery and have only had slight leg swelling.

Am waking up with extreme joint pain in both shoulders and one hand each morning.
Last immunotherapy infusion was in April. Has anyone else experienced this?

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Shelby - MRF's picture
Replies 3
Last reply 8/28/2020 - 10:39am

Dear MPIP Community,

It is bittersweet that I let you know my last day with the MRF will be tomorrow, Friday, August 28.

I have accepted a position with ZERO – The End of Prostate Cancer as the Vice President of Patient Programs and Education. I will be responsible for implementing and evolving ZERO’s programmatic strategy and will lead the operations and growth of ZERO’s patient programs. This opportunity will allow me to advance in my career while still helping to meet the needs of cancer patients.

As some of you know, I've been with the MRF since 2010. I've had the amazing opportunity meet so many people in the melanoma communtiy and can't tell you how much each of you and your stories mean to me. Being in this role has made me a better colleague, friend and person. I will always be a melanoma advocate and will never stop fighting for you and your families. I will miss you and hope that our paths will cross again.

If you need anything from the MRF team, my colleague, Lauren Johnston, will be taking over some of my responsibilities. Please don't hesitate to reach out to her any time at ljohnston@melanoma.org

All the best,

Shelby - MRF

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MelanomaMike's picture
Replies 8
Last reply 8/27/2020 - 9:29pm

Hi Family, im here, not as much as i said i would but, i just need to shut up and write when i can Haha...
Well, where do i begin, as you all know its NEVER a dull moment in my world, the word "Pain" is used in my vocabulary probably more then anyother word these days, starting about the end of July, i began to have pains down in my "anal" area, literally the "sphincter" (the "Gates of Hell" as i call it!) and a bit more inside, but definitely the sphincter, inflammation, very sore, its not hemorrhoids my surgeon said, hes thinking its traumatized  "nerves"  that are healing and reattaching itself. I tell you all, my 9cm Sigmoid Tumor pain was the WORST pain ever but, this pain is different for one, but excruciating almost like pain i endured then. Scans doesnt show any abnormalities, a little constipation but nothing that would cause this amount of pain,(no abdominal pains) so, were doing the ol'  Watch & Wait game plan and see if it heals, if not, the ol' Sigmoid Scope will team up with Jacques Cousteau and take a dive for a look see... Im taking Lyrica (good on nerves apparently) plus im taking Oxycodone and a low dose Methadone (5mg) also good on nerves unlike most typical opioids..
Anyways, thats how bad it is, hot baths take a away the pain COMPLETELY can you believe that!? Water is basicly free, theres a slight abundance of it "AND" its not a drug or drug alternative snake oil or homeopathic boiled root broth, nope,  just good ol' hot water on my ass (i just fill the tub up to my bum! Lol)  i told the wife to order me a plastic hospital pillow cuz the tub may be my new temp bed....I mean comon' thats nuts huh? Hot water, who knew! My heating pad or pack doesnt do what a submerged butt in hot water can do!....I start my "newest" trial next Tuesday Sept. 1st,  Protocol #20193525 by Rubius Therapeutics, my med is RTX-240 a Monotherapy that co-expresses 4-BBL & IL-15TP  i guess its a fusion of IL15 and IL15 receptor alpha that could help me to improve anti tumor activity and whatever else it can do ill appreciate!!..ya guys, i hate to report to you but, i now have 2 new lesions, both in my Liver, one is 1.2cm the other is 1.7cm,  the 1.2cm one is in the region of the Hepatic Dome, the other, the 1.7cm is in the right Hepatic Lobe. So, so yah, it never fails, we kill one bastard in a place that caused terrible pain & then another Mel Monster pops up like what? a month later? Now my Liver? It sure does love to travel, it travels more then i do that lucky piece of feces!! You know its taken me about 3 days to write this, it hurts so bad, so i write bits at a time on my Samsung Notes app, pretty cool app then i just paste it to MRF! Im sure alotta of you do this.....oh, mind you, the pain i have isnt caused by my liver lesions apparently, (per Dr. Hamid) sounds about right, i know our bodies "can" be weird like that though, like having a tumor in your left foot but feel it in your right jaw area haha...
Anyways my peoples, i dearly hope your not in pain as i am 80% of the time, i hope your all stable and kicking ass, and please, PLEASE excuse me for not being around like i use to, my life is different now in a lot of areas, a new chapter has started and im not liking this book at all...I love you all with all my heart...
         The one, but not the only,
                   Melanoma Mike!

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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TimCT's picture
Replies 4
Last reply 8/27/2020 - 9:54am
Replies by: TimCT, sks2019, Bubbles

Hi All,

Anyone have any info on this one? My doc is trying to get me into this one, after progressing while on ipi/nivo and before we try taf/mek. The intratumoral approaches are very interesting, I'd be very interested in seeing if any data from phase 1 has been made available. Thanks for any help!

Tim

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Kim K's picture
Replies 8
Last reply 8/27/2020 - 6:33am

Hi all, it has been a while since I posted. I am still NED and insurance has long refused to pay for any more follow up. My oldest is now a sophomore and youngest starting middle school. Mom passed away and I have been with a wonderful man for the past 3 years. We are postponing our wedding until there is a vaccine for Covid but will have one heck of a party. (Yes we are doing a justice of the peace thing until then). My brother bought me out of our childhood home after Mom passed and I purchased a 45 acre parcel to move and expand our farm. Best part, no neighbors! It is also in lava zone 3 and only 12 miles from Hawaii Volcanos Natl. park where it is nice an cool most of the time. Once and a while I check in and hope to see my old-timer friends like Carole Kelley! Aloha All!

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/27/2020 - 6:20am

My husband is a newly diagnosised melanoma patient.. This is so very scary and I am having a hard time with this.. our lives have changed and i feel lost at times.. the cancer has spread to two lymph nodes which they removed.. he had his first of 12 treatments of Nivolumb. Im trying to be positive an strong for him . but my mind is constantly thinking of all the what ifs... just looking for support through these difficult ahead for us.. remaining hopeful but still so scared... are there any other newly diagnosised stage 3 melanoma people out there? my husband has a positive attitude but he really doesnt want me to talk to about it or ask too many questions..

Phyllisd

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AMcReader's picture
Replies 2
Last reply 8/26/2020 - 10:56pm
Replies by: Baby_Girl, gopher38

For those following along my crazy August 2020 journey, I wanted to share that after taking my pre-biopsy screening on Monday, last night I was diagnosed with COVID!!! Despite FIVE months of quarantining with a toddler at home alllllll the time while also trying to work full-time. I have not even been to a grocery store since March 13, so how I have contracted COVID is a total mystery to me!

Luckily, I’m not currently dealing with any symptoms from that and in the end it will only push out when I’m getting my biopsy results by 8 days, so I’m trying to be optimistic, but oh what a month!

On a positive note, after experiencing weeks of stomach pain, yesterday I woke up pain free and was able to eat three full meals, take a walk at a metro park (didn’t know I have COVID yet!), chase after my toddler and mow the lawn! By some miracle, I also feel great today. I’m letting this mentally reaffirm for me that these new lesions are not melanoma and instead something else benign and boring! Fingers crossed!

Thank you for following along on my journey, it’s been helpful to have a place to share the details with those who know the chaos of Melanoma.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Anonymous's picture
Replies 7
Last reply 8/26/2020 - 8:34pm

Curious questions because scanxiety is at an all time high. And unfortunately practiced at this - 5 years NED and this is the final one of the trial.

The scan results are posted online but we don't meet with the doctor until next week. Would you want to take a peek at them now or wait? Ahh the suspense!

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TimCT's picture
Replies 36
Last reply 8/26/2020 - 9:23am

Hi All,

I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:

Since August/September I've been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn't a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.

In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.

About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.

I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.

On Tuesday I was in an oncologist's office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.

So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.

I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn't see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn't see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?

Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it'll be another long week of waiting for the scans on Friday, and then however many days until they're read and communicated back to me. Its sorta like this is the calm before the storm - is there anything I should be doing physically to prepare for treatment?

Thanks for listening, and for any help/advice!

Tim

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THMoore's picture
Replies 20
Last reply 8/25/2020 - 10:11pm

OK everyone,
I am in need of some positive reinforcement from all the melanoma warriors in this forum. I just got off a video call with MDA and my liver biopsy came back positive with Melanoma. I have had 4 treatments of OPDIVO and the 5 nodal tumors in my neck decreased in size and were no longer showing active on the PET scan. But a new tumor appeared in my liver in less than 2 months. I was thinking surgery would be an option, but the oncologist explained that he believes there are probably more lesions just not viewable with a CT or PET. So he recommended 4 full IPI/NIVO doses and explained that he believed my K601E melanoma was aggressive. In addition, he said that if this action did not work clinical trials would probably be my next best option. Being confined to a wheelchair, I have other emotional items to deal with.

What I am asking for is positive stories, or advice from warriors who have received the IPI/NIVO course. Can I do this?

Thank You All, Trent

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KellyCDM's picture
Replies 7
Last reply 8/25/2020 - 7:38pm

Hi everyone,
I received a melanoma diagnosis on my front thigh 3 weeks ago. The path report states 1B with Clark level 3 and 1mm depth. I am scheduled to have a WLE & SLNB on September 10. I was wondering why they can’t check the the lymph nodes through PET or CT scan rather than remove them? I have submitted this question for the surgeon as I am concerned about lymphedema but have not heard back. I was handling it all very well but have become increasingly worried as time goes by. I am waiting 6 weeks for surgery since biopsy date and I read it spreads very fast. If anyone can explain why scans can’t be used to detect spread to lymph nodes, I would be so grateful!
Kelly

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Chelem2's picture
Replies 2
Last reply 8/25/2020 - 1:04am
Replies by: Chelem2, Bobman

Hi, I was quite surprised after two yrs to suddenly develop a mole that had to be biopsied for possible 2nd primary melanoma. I was just starting to feel "safe." I know in my head it is good to find everything early but the doctor was hey it has to go. Sudden new moles are not good anymore and he feels at the age of 52 I wouldn't be just developing safe new moles though I could.

My original was Stage 1A on my leg. Now this one is on my back. I saw a picture before removed and it really doesn't look like anything. Like I have 20 other moles I wish they would just cut off to be safe before that little straight pin top sized thing. Waiting for the biopsy results is never comfortable for me.

Then of course it makes me wonder if other cancer cells are lurking. I read everyobe else's journey and I know that I am so fortunate to have found mine so soon, under 1 mm. This has just thrown me for a loop. It feels like multiple sites and multiple spots are not a good thing at all.

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Hi. My name is Susan. Its been a long time since I visited and so glad I re-connected. I lost my brother 7 years ago to this ugly Melanoma.
He was only 45. Still hurts big time. Still wake up at night thinking this was a nightmare.
I was hoping someone can give me a good Derm Doc. in NJ. I am in Ocean County. I don't mind traveling.
My boys have moles where the sun don't shine and a little worried.
Thank you and I am here for any that need support and/or advice.
Wishing all of you best wishes and lets get a cure.

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