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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2Kathy's picture
Replies 5
Last reply 6/19/2018 - 10:22pm

My first infusion of ipi/nivo was 9 days ago. On Tuesday, I started with fever/chills/neck pain. Neck pain subsided after 3 days but the fever/chills remain and I am managing with Tylenol and lots of liquids. The past 3 nights however, I have had crazy night sweats, which is something I haven’t experienced ever in my life. Nightclothes soaked. And waking up multiple times per night.

anyone else on this combo who experienced this side effect and if so, was it around for long? Aside from it contributing to the fatigue, I am concerned that it could indicate I’m having some negative impact on my thyroid from the treatment.

Thank you.

 

 

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jagstter's picture
Replies 8
Last reply 6/19/2018 - 8:54pm

Labs, Full CT & Brain MRI on the menu for today. Meet w/ the Team, tomorrow to discuss known (kidney tumor) & unknown. Hoping nothing else turns up, though I've had a 1" hard lump behind my left nipple, since the beginning of May & am still recovering from prostate surgery, early April. That recovery has been surprisingly difficult, even though I'm now 9 weeks out. I'm pretty sure I've developed another UTI (ugh!) but the doctors here were kind enough to order a urinalysis & save me from waitning another 2 weeks, before my appointment w/ the urologist back home.

Per Celeste, I'll definitely push for a neoadjuvant approach, especially if any vagary exists about the exact nature (RCC or Mel?) of the kidney tumor ... it's at least worth a try & may stave off surgery, at least for a while. Like most of you, I'm sure, I've had more than enough of that ;-)

Anyone in town? If so, it would be great to connect. Please, let me know & take care, everyone!

 

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VinceMart's picture
Replies 5
Last reply 6/19/2018 - 12:13pm

Hi all,

I have a MRI tomorrow, last one was 8/2017 and clear.  I am a little nervous since this past year I have had 2 in transits and lung and liver mets.  I am currently on Keytruda and Mek.  I will keep updating in case anyone else is on this combo and please reply if you have any experience with this combo. Hopefully I will have good news!  Best wishes for continued good health to all!

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ksbadger13's picture
Replies 1
Last reply 6/19/2018 - 12:38am
Replies by: Janner

Hi all - 

I went through genetic testing last year and am positive for the mutation in the CDKN2A gene which significantly increases risk for both melanoma and pancreatic cancer. My genetics counselor suggested my husband and I look into IVF with PGD (preimplantation genetic diagnosis) if we decide to have our own kids down the line, to avoid passing my gene on to them. Since there's a 50/50 chance that I would, and having lived through and with the turmoil that is melanoma, now coupled with the nagging concern about pancreatic cancer, this method does sound appealing, though scary and expensive. I'm wondering if anyone on here has tested positive for the gene, and if you've had your own kids, considered IVF, or decided not to have kids. This is such a rare mutation, with not a lot of searchable information or support, so any input would be appreciated! 

Thank you for your time!
Kellie 

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Tracyyy's picture
Replies 5
Last reply 6/18/2018 - 3:23pm

Hi, warriors, wanted to share some good news with you. This morning mum had first CT scan after staring Taf/ Mek in a trial for Stage 3 C unresectable in the end of March and we just got the results - the oncologist told us that the results are great and the pelvic nodes decreased in size! I am so happy, this is the best news we got since November 2017. On our way to NED! Honestly I expected the nodes to disspear knowing that target therapy acts fast, but we will take one step at a time and pray that the drugs are our miracle.

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HeidiZ's picture
Replies 3
Last reply 6/18/2018 - 12:15pm
Replies by: cancersnewnormal, Becky

Can cutaneous melanoma spread to the mouth, and if it can does that mean you now have mucosal melanoma too?  My original melanoma was on my scalp but my melanoma surgeon always looks into my mouth during my exam?  He says he is checking for melanoma.  If he did find melanoma in my mouth, let's say my tonsils, wouldn't that mean that I now have mucosal melanoma too? Thanks. HeidiZ

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Raco's picture
Replies 3
Last reply 6/18/2018 - 11:56am
Replies by: Susanlee528, Anonymous, Janner

If you are on your treatments IE:  Opdivo and you have a new mole show up OR an old one is changing,

will your current immunotherapy take care of it also.

OR do you need to see your Dr and determine if its Melanoma?

Thanks

RACO

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2Kathy's picture
Replies 18
Last reply 6/18/2018 - 9:23am

Me: Stage iv, large lymph node tumor, a few small ones, LDH normal. Diagnosed 5/22.

I’m a week out from my first infusion of Yervoy +Opdivo. I’m feeling overwhelmed, among many other things. I slept most of the day after my treatment, was little less fatigued the next day, but had neck pain and fever Mon-Weds, which has lessened tonight.

I read this board and participate in another online support group, and have learned a lot and gotten much-needed support from the only people who can understand what I’m going through. But...

I feel so utterly uneducated when I read other people’s posts. The acronyms and knowing every bit of data of all your lab tests and basically being walking encyclopedias about melanoma...it’s so daunting to figure out how and if I can become that knowledgeable. A lot of what is said here, it’s just Greek to me. And I’m the type who likes to ask questions and learn stuff, but trust me, I didn’t have the smarts to go to medical school and it feels like I need to basically become one now.

Anyone with a stage 3/4 diagnosis who was already suffering from depression? I’ve been on medication for depression and anxiety for many years and I’m definitely not saying it’s harder on me to have this diagnosis than it is for others but I am concerned that my depression has reached extreme lows that I had never experienced a few times since this started. My cancer center offers psychological counseling specifically for cancer patients and I’m going to try and get a referral so it’s covered.

The emotional and psychological toll this is taking on me is profound. And I don’t see other people saying that in online support groups. I see a lot of people sharing about the medical challenges, but it’s not common to see people talk about feeling sad, scared, depressed, etc. Makes me feel kind of alone. Going to a melanoma support group in a few weeks and I hope that will help me, the nurse who runs it is wonderful, so compassionate.

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Terry Palardy's picture
Replies 6
Last reply 6/17/2018 - 12:01pm
Replies by: Terry Palardy, Janner

Hi, I've just rejoined the conversation after a long hiatus ... recent biopsies revealed two new melanoma sites, an a new squamous sites, bringing my total number of individual sites now to ten, I think. The surgeon, who has always done MOH surgeries, said he will do a wide excision this time, to try to get it all in one swoop, one site at a time over a period of several weeks. 

My husband, best friend of over fifty years and caretaker passed away eighteen months ago, on Christmas morning. It has been a long sad journey without him by my side. My RRMS remains quiet, and I remain med free in that quarter, having experienced the sudden bloom of skin cancers immediately following four years of MS 'disease modifying drugs' that attack the immune system. I will always regret that treatment, and will never treat MS again. My symptoms are minimal: optic neuritis and cognitive decline rather than mobility issues.

I'm curious as to the term 'invasive.' Does it mean metastasis is ahead? I do have pulmonary nodules, and will be having a routine CT scan next week, monitoring them to assure no 'changes' in size or number. I'm told they are typically benign. The scan was scheduled before I had this recent bout of biopsies and melanoma readings.

I will be doing my own after-care without my husband by my side. I'm guessing it will be similar to the care of post-MOH surgery sites. Anyone here have any experience to share for me, regarding moving from MOH to Excision? All advice is appreciated. Many thanks - Terry

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aldrichdesigner's picture
Replies 6
Last reply 6/16/2018 - 9:02pm

I don't know about everyone else but ever since keytruda doses started; I seem to sweat like crazy no matter what time it is. The worst is in bed though, I will wake up in puddles around my neck and my waist area. And sometimes I can even feel it coming on sort of like when your going to get a fever.
It's really annoying and I dont know if this is something every one on keytruda/pembro is experiencing or if it's just me? I don't see it listed on the list of side effects.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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steph4746's picture
Replies 5
Last reply 6/16/2018 - 8:52pm

Hi all, 

I had my first CT scan after finishing four rounds of ipi/nivo so I thought I did share my results  No detectable signs of melanoma!  I could not be more thrilled  The small met near my original groin lymph node site was gone (This is the location that appeared when the Taf/Mek began to fail) and the possible 3mm met (unclear because of lung scaring from loads of pulmonary embolisms last year) was gone too  

 

My team is thrilled with my response and I will soon be back to treatment in a couple of weeks  I have had to take a small pause because I developed Hypophysitis after my fourth round  Additionally, I am now deleoping vitiligo of my skin and nails  My fingernails have grown in white and are sunken at the beds  Has anyone had crazy nail stuff happen with ipi?  I fear they may all fall off  

 

 

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MDUNKLE's picture
Replies 11
Last reply 6/16/2018 - 8:20pm

Hello - I'm Michelle, my husband Tom was diagnosed with Stage 4 metastatic melanoma last Thursday, 6/7.

We are going to the James Cancer Center in Columbus, OH, his oncologist is Dr. Claire Verschraegen. Has anyone heard of Dr. V or been treated at the James?

Tom's melanoma started with a mole on his back, 4mm+ depth, removed last month along with lymph nodes. One of the 8 nodes showed positive for melanoma. PET Scan on 6/7 shows tumors in his pelvic area, hip bones and back and full in his liver, there is also a spot on his lung.  MRI shows a small 3mm lesion being reviewed for melanoma but initial is it is not in the brain. We are still awaiting BRAF results. Initial treatment discussion has been immunotherapy and BRAF treatment if applicable.

We haven't gotten a second opinion - should we? and if so where? Who?

What questions should we be asking right now?

We are trying to move past shocked and denial stages to take action. We have changed his diet from total processed and fast food to a low-fat/sugar, fresh veggies and fruits, no red meat, seafood (he doesn't love chicken), lots of garlic and stopped drinking all of those awful drinks (redbull, monster, gatorade, etc). Also starting to exercise.

He is feeling some pain in his back, any suggestions? Dr. prescribed vicoden, I would prefer a more natural pain relief.

Thank you,

Michelle

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MichelleRHG's picture
Replies 6
Last reply 6/16/2018 - 5:16pm

Hi Friends,
I always like reading good news here. It gives me hope. Maybe my report will help someone, also. I recently advanced from stage 3 to 4 and had a thoracotomy 8 weeks ago to remove 2 lymph nodes in my chest that were adhered to an artery. After a few rough weeks, I am healed and my pain is gone. The best news is this week's CT showed no active disease. Now to step off this rollercoaster for the next 3 months. Feels weird to have stage 4 cancer but have nothing detectable. I'm sooo thankful!

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Rncab218's picture
Replies 7
Last reply 6/15/2018 - 8:21pm

Hi,

It has been a long time since I was on this site.  WhenI was first diagnosed in May 2009, I was a daily visitor and received so much support here.  I was diagnosed stage 3, no known primary,two positive lymph nodes, wide excision done and 10 months of Leukine.  I was followed closley with scans for five years and last month a nodule appeared close to where others were (left forearm) and was positive for melanoma.  Had a wide excision today and meeting with oncologist at MSK tomorrow to discuss adjuvent treatment with PD1.  Surgeon told me I am eligible for this treatment but not sure if side effects warrant the use as I was NED for nine years and have one positive nodule, PET scan and CT of lung both negative.  Any information or thought would be much appreciated as I cannot decide wheich way to go.  I read so many negatic side effects but don't want to advance to stage 4 and wish I had done somthing to prevent it.

Thanks,

Cindy

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john24's picture
Replies 8
Last reply 6/15/2018 - 1:01pm
Replies by: Julie in SoCal, Bubbles, Coragirl, ed williams, Anonymous

i was battling with prostate cancer for 2 years. Until my consultant
Dr Ahmed Mustafa from Dubai told me about a cure of another patient who got treated by one of his
colleagues in Dubai using cannabis oil. According to Dr Ahmed's story, the treatment lasted for 3 and halve months. So,
he said i too can be treated by this same method. So, he contacted his colleague and he came down to discuss how this can be done.
I was placed on four months treatment. This happened early 2017 and now i can confidently say i am free from any cancerous cells.
Although i still go for routine check up, but no trace of cancer cells.
if you want to contact Dr Ahmed Mustafa on this, send him a mail on cureforcancerinitiative@gmail.com

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