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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Coragirl's picture
Replies 10
Last reply 5/19/2018 - 8:54pm

My husband had his first infusion of Opdivo a week ago today. He is feeling good and hasn't really had any side effects except a little fatigue the day after the infusion. Do side effects increase with each infusion? If he isn t experiencing side effects does that mean it's not working? I hope I'm not asking dumb questions. Thanks any feedback is appreciated.

Amie Taylor

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Hukill's picture
Replies 8
Last reply 5/19/2018 - 7:13pm

I had CT and MRI last week, all came back NED. Also had dose numbers 45 and 46 which was my third double dose of nivo. I have been NED since last August and will continue on the double dose until August and get another set of scans. If I am still NED we are stopping the nivo which would be 52 doses. Those who are just starting on the combo or just nivo side effects means your immune system is probably reacting.

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From MD Anderson melanoma... this may be some helpful into for anyone newly diagnosed or advanced in stages. If you've got a Facebook account, take a peek: 

https://www.facebook.com/MDAMelanomaMedicalOncology/videos/1624357227633...

http://cancersnewnormal.com

-- Niki

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dmarie's picture
Replies 4
Last reply 5/19/2018 - 12:49am
Replies by: cjm22, Anonymous, dmarie

Hi again. I just posted about dry heaves, and I wanted to post separately about husband's OTHER odd issue - pain with urination. Apparently there is blood in his urine - (yes, his med team is aware, but does not seem super concerned about this). 

We are in the proceses of getting him a referal to Urology, but apparently it is a process. (SO frustrating!) 

An 'unremarkable' finding in scans from November and again in February show a polypoloid lesion in his kidney - but it was unchanged from Nov to Feb, so they think it could be a kidney stone. 

He is drinking LOTS of water (but always has). He has terrible difficulty peeing lately - not a lot of output, and VERY painful when trying. He feels as if he cannot drink enough water. He had labs done yesterdday and everthing was normal. They did give him IV hydration just in case. And afterward, he still could not pee.

He was prescribed pyridium to help alleviate some of the discomfort, but that is a very temporary fix, and only barely takes the edge off anyway. 

My question is has anyone had anything like this? If it was kidney stones, what did they do? Any (quick) home remedies work for anyone? 

Thank you so much,

Diane

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dmarie's picture
Replies 2
Last reply 5/17/2018 - 2:45pm
Replies by: dmarie, Hukill

Has anyone experiened dry heaves? If so, what did you do to stop them?  (Please note that we spent the day at the Cancer Center yesterday meeting with his team for this issue, urinary issues, and getting IV fluids for dehydration). 

Husband started getting them occassionally after #2 ipi/nivo combo infusion. It was only a couple of times over the 3 week span. This was, unfortunately, when a nasty cold was making rounds through the family, and he got hit big time - so lots of coughing and feeling yucky (on top of ipi/nivo!). Then, after infusion #3 as cold symptoms were disapating, the dry heaves became a bit more frequent, triggered by either sips of water, sitting at the dinner table, after taking a bite of food, or brushing his teeth. Always preceded by a small cough (tickle in his throat). Often, he could avoid it if he had eaten something or had a smoothie. Now, after last infusion the dry heaves are happening a lot more frequently. Last night he had 3 bouts one after the other from 1 am to 2 am. A smoothie seemed to calm whatever triggered this. 

This is really putting him through the ringer. Does anyone have any experience with this and what can be done to stop it? Docs have no answers. 

(History - dx Stage IV Aug '17 - brain, lungs, liver, bones, lymph / craniotomy 8/'17 for largest lesion / Taf/Mek mixed response, stopped after 5 months / WBR Feb '18, ipi/nivo started 2/28/18, finished 5/2/18)

Thank you in advance for any insight, thoughts, or suggestions.

Diane

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VinceMart's picture
Replies 5
Last reply 5/17/2018 - 10:02am

I had been on Keytruda for 3 months then liver progression, then TAF/MEK (short stay due to side effects), now I feel another in transit in my scar.  These in transits seem to keep popping up in my same scar area eventhough I have had 2 WLE and CLND.  Immunotherapy and Targeted Therapy don't seem to be working either.  I am getting discouraged trying treatments only to to see more mets and progression.  I have a CT Scan and appt next week, need some positivity from long term Stage 4 warriors on this site as I am becoming discouraged with what seems like a downhill battle for me. 

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I had been on Keytruda for 3 months then liver progression, then TAF/MEK (short stay due to side effects), now I feel another in transit in my scar.  These in transits seem to keep popping up in my same scar area eventhough I have had 2 WLE and CLND.  Immunotherapy and Targeted Therapy don't seem to be working either.  I am getting discouraged trying treatments only to to see more mets and progression.  I have a CT Scan and appt next week, need some positivity from long term Stage 4 warriors on this site as I am becoming discouraged with what seems like a downhill battle for me. 

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steph4746's picture
Replies 6
Last reply 5/16/2018 - 2:14pm
Replies by: steph4746, KAF, BillB, Bubbles, ed williams, Anonymous

Hi everyone!

Ive been reading here on a regular basis for almost a year now and I guess I finally feel ready to jump in and join this amazing community. I’ve learned so much from all of you since my diagnosis and I’ll be forever grateful to you all. 

I’m a 44 yr old female who was diagnosed with stage 4 metastatic melanoma (unknown primary) one year ago. Initially I thought I was coming down with pneumonia and went to my local urgent care office. Rather quickly I was rushed by ambulance to a major hospital where they thought I was either having a heart attack or had a collapsed lung. Soon after it was discovered I had dozens of pulmonary embolisms. After a lot of tests being run, it was determined that I probably had cancer and I had surgery on a swollen lymph node in my groin (I thought the swollen lymph node was an exercise injury). Anyway, a week later I was diagnosed with melanoma (small met in my groin lymph node and a larger met (3cm) in my pelvis) and of course my life hasn’t been the same since. 

I’m BRAF positive and started with Taf/Mek. I was on that treatment for 8 months before my scan showed a tiny uptick in cancer growth near my groin lymph nodes. Since I’m on a clinical trial it dictated that I make the switch to ipi/nivo at that point (the trial is to determine whether it is better to start w/ taf/mek or ipi/nivo and the computer randomization chose taf/mek for me first).  

So, now I’m on the ipi/nivo portion of the trial and I just finished my fourth combo infusion one week ago  I have had some rough side effects (folliculitis- all of my hair fell out, dermatitis, dry mouth), but my last does was the real kicker.  I developed a severe headache last Thursday and this mornings MRI confirmed our suspicions that I now have Hypophystisis (inflamed and enlarged pituitary gland).  I started a round of prednisone this morning (which immediately took away the headache!) but also will delay my getting to the just nivo portion of my treatment.  Fortunately for me I have felt pretty good during this entire year and have been able to fold the treatments and side effects into my daily life with a certain amount of ease.  I live in the Portland Or area and am receiving amazing care. (My mel specialist is Dr Brendan Curti, plus I see Dr Nicholas Barber for regular appointments)  

Once again, thank you all so much for your encouragement and wisdom. It truly is a lifeline to me and, I’m sure, many others.

 

stephanie 

 

 

 

 

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Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Julie in SoCal's picture
Replies 8
Last reply 5/16/2018 - 7:16pm

Good day friends!

Up until the last few days I have been enjoying the NED dance, but unfortunately, last week I found a new intransit met. It is in the same area and it feels like all the the others, so I'm pretty sure it's mel.

Previously, I've had IPI and Pembro and watched various intransits melt away only to have new ones pop up.  After failing Pembro I just had them surgically removed.  No problem.

So my questions for you all:

1) should I just do whack a mole and have them surgically removed, or should I pair surgery with something else?

2) if something else, what?  

3) how big of a range is T-Vec's bystander effect?  How far does it go.  If I zapped my current intransit with T-Vec, would it do a regional mop up? Or would I need multiple intransits and multiple T-Vec injections for that.

3) Do I have any other options?

To complicate things, I have had Non-Small Cell Lung Cancer, so I won't qualify for a trial.

Thank you friends,

I wish you peace!

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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SamS's picture
Replies 10
Last reply 5/17/2018 - 10:31pm

Not BRAF, KIT or KRAS.. my recent met tested as  NRAS. Currently all mets have been in my leg, PET showed no evidence of ‘avid lymphadenopathy or metastatic disease’. Just recovering from massive LWE and graft, and handed my results. Freaking out a bit as the report comments NRAS is more aggressive and a worse prognosis. Not offered any treatment besides surgery. Anything I should know ? I’m in New Zealand so things are handled differently here. So I thought I’d ask if anyone has any first hand experience relevant to this. Thanks for your help ! 

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/20/2018 - 9:39pm

Has anyone else been diagnosed with Type 1 diabetes after starting Opdivo treatment?  I was after 3 treatments.  Boom there it was!  Good news is that I have been in remission since Mar 2017!

BK

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MelanomaMike's picture
Replies 7
Last reply 5/17/2018 - 11:37pm

Hi Family, boy this stuff {Opdivo/Yervoy} better be working cuz i feel like poop, like Flu like symptoms, mild nausea that never leads to vomiting {not yet anyways}, achy body, my head pounds when i get up to quickly but then goes away, its just like the flu...Im drinking plenty of water to stay hydrated & my hunger is ok, i get full fairly quicker then normal but thats ok, i wrap it up and reheat for later...I just wanted to share whats going on with me, im off work for a bit {thank god} but may go in tommorrow if i feel better. Ive noticed i feel worse at night....take care ya'all, and if yer feeling the same, well, im right with ya, this sucks but we have to warrior through!...Love ya guys, Mike...

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guynamedbilly's picture
Replies 4
Last reply 5/25/2018 - 7:30am

I've pretty much only been putting on sunscreen when I'm going to be outside for a significant time, or I'm going to be in direct sunlight for more than a couple of minutes.

I don't do it when just walking to my car from my house, but with the hot sun shining down now I wonder if I should just do it everyday.

What do the rest of you do?

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tedtell1's picture
Replies 5
Last reply 5/17/2018 - 6:51pm
Replies by: maryb-z, marta010

Friends;

A friend who has been undergoing chemo and immunotherapy for another type of cancer said she had been told that doing a double dose of claritin (not d) can help with body aches associated with therapy. You take the doses for a couple days before then a couple days after. She has not tried it yet. Has anyone tried it and did it work? My body aches after infusions are getting really bad...especially my hips and thighs. Would love to find something that could help.

Blessings to all of you warriors,

Ted

Ted

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