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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space oddity's picture
Replies 5
Last reply 9/4/2020 - 1:25am

My husband has been on Keytruda for almost two and a half years now. It has worked very well for him, with no side effects except from mild vitiligo on his face and hands. His blood tests were fine as well, but he has noticed a gradual drop in his hematocrit levels and now it's on 39. Is it possible that Keytruda causes this drop? When he asked his doctors they told him it is the hemoglobin they're interested in and didn't give much notice. Thank you

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THMoore's picture
Replies 1
Last reply 8/29/2020 - 2:42pm
Replies by: ed williams

I received the PET SCAN results back and it explains the following:
There are tracer uptake in the spleen, adrenal glands and kidneys, pancreas and bowels. My previous 2 PET SCANS do not mention this. The oncologist said this is normal. This change occurred when a new lesion was found in my liver. Can someone help explain what this means. Is it the beginning of new lesions?

Thanks,
Trent

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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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AmyM's picture
Replies 2
Last reply 9/4/2020 - 1:47pm
Replies by: LH2000, Mark_DC

Hey,
Thankyou so much for the advice and guidance so far, it all really helps when trying to deal with melanoma. My dad recently completed SRS for 3 intracranial brain mets. Dad is on targeted therapy enco/bini and this was stopped for a few days before, during the treatment and after- in total about 8-9 days. Dad was on dexamethasone 12mg for the SRS and the day after then it was stopped. The next day he started feeling unwell and this progressed to then a hospital admission. A CT showed a new 1.5mm lesion and swelling around the original mets. Unfortunately then an MRI showed a further 2 small lesions. Dad did well and was discharged from hospital 2 days later and is feeling his usual self again, so thankful for this as it is a worrying time.
The oncologist now is continuing targeted therapy hoping that we have some more time however he has now said things aren’t looking great.
Has anyone had melanoma progress this rapidly when off treatment?
It seems SRS is off the table, is there a time frame when you can use SRS again?
Does anyone have any other treatment suggestions?
Feeling like we are running out of options. We are being treated in the NHS and at times I feel it’s not person specific as I feel dropping dads dexamethazone that quickly wouldn’t have helped his symptoms however it did allow us to find the 3 new lesions. Dad is 56 still active, working and is his normal self so this all seems hard to believe.
Thanks,
Amy

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TimCT's picture
Replies 12
Last reply 10/5/2020 - 2:52pm
Replies by: TimCT, hxcadam, Bubbles, gopher38

Has anyone been on this therapy? It looks to be the way I'm headed. My doctor says that it was recently approved by the FDA, the concern will be getting insurance to pay for it.

I started with ipi/nivo and after a good early response, I've progressed. Because of the virus, the intralesional trial he wanted me to enroll in didn't open in time, and the amount of progression I've had has pushed us towards needing to do the BRAF inhibitors. But he wants me to stay on the nivo, because of my early response and some vitiligo that has shown up on my arms. He's hopeful that the BRAF inhibitors will work in the short term and the nivo will work in the long term. I had a nivo infusion yesterday, and the Braftovi/Mektovi should be delivered this morning. Another infusion scheduled for 9/17.

There doesn't seem to be a lot of recent info out there. Curious if anyone on the board has any experience with it this therapy. Thanks!

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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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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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GerryG's picture
Replies 4
Last reply 8/29/2020 - 10:28am

Today I received my CT scan results, NED. I had 2 doses of combo immunotherapy in 2017, due to liver enzyme elevation I had to abandon treatment. At the time I was devastated, but luckily I had a fantastic response.
Always going to be a worry as to when and if the Melly monster will reappear, but today I’m doing a happy dance.. I live in not tooooo
sunny Scotland, the protocol here is after 3years of no recurrence, once a year scans, and 6
month reviews..I like to give a wee bit of positivity to all of those who have joined the battle...

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sing123's picture
Replies 4
Last reply 9/1/2020 - 5:50pm
Replies by: THMoore, sing123, Bubbles

Do you recall for how long you had if?

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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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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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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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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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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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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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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