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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Anonymous's picture
Anonymous
Replies 4
Last reply 5/20/2018 - 10:38am

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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jennunicorn's picture
Replies 4
Last reply 5/20/2018 - 1:29am

Hey friends! Hope you're enjoying the weekend so far. 

I wanted to update about my knees. All throughout the 2 years of treatment I had pretty crappy joint pain. It was not new, I had dealt with some level of joint pain prior to any immunotherapy, but it definitely got worse after infusions, especially my knees. 

Since I stopped treatment in November most of my joints have been doing fine, except my knees. They continue to hurt like the dickens so my PCP had them x-rayed, didn't show much besides some cartilage loss. So, I did 6 weeks of physical therapy in the hopes I can strengthen my legs to support my knees better. The left one is doing better but the right knee continued to hurt and not feel any improvement. Next step I figured would be to see an orthopedic surgeon to get a cortisone shot. She ordered an MRI and BAM... lateral meniscus tear and a cyst! An injury like that was literally the furthest thing from my mind. I never did anything that I can recall that would have caused a tear. I was thinking osteoarthritis this whole time. 

So, surgery to repair it will happen in July. I have many miles left to put on these knees so I hope once she gets in there it is repairable. Also means I will be stuck at home for 4 weeks afterward recovering... but hey.. I will take knee injury surgery over the scary unknowns of cancer surgery any day!

My next set of scans is a month away... it's been very strange going almost 6 months without scans. I am trying not to get anxious about those just yet..

Since this month is melanoma awareness month and I have an awesome job with an awesome primary care company, I was able to send out a huge email blast to all the doctors and nurses in the company reminding them about melanoma and to bring up skin checks with their patients. I gave them handouts to give to their patients and a page of facts. It was amazing the response I got, how grateful they were to have that information. There are many facts about melanoma that a primary care provider does not know, and I had many of them respond with, "WOW I didn't know that! Thank you!". There is even a sign at the front desk about melanoma awareness month so patients can see it as they check in. My small mission to bring awareness and to make skin checks a regular conversation between all primary care providers and their patients has begun.

 

As always, sending all the positive vibes and hugs to those that need it right now. 

 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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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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Anonymous's picture
Replies 22
Last reply 5/19/2018 - 5:56am

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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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John T's picture
Replies 4
Last reply 5/18/2018 - 11:45pm
Replies by: TexMelanomex, Julie in SoCal, Dkhammer1, Anonymous

Hi All...

Quite understandably most posts in here are about reoccurrances,new issues,diagnoses etc. People fortunate enough to have avoided all these (due to positive outcomes of treatment), tend to not report back, as nothing to report...skewing the stats!

I would just like to remind everyone there is hope and are positive stories.

I got the old "80% chance of you not being around in 5 years" story.. (Stage 3b lymph node)...but 10 years later still hanging around, no reoccurrances,no drama.. (Had only surgery at the time,no other treatment).

Not trying to claim or prove anything (and hopefully not tempting fate!)..just sharing a positive story and hope to anyone who might benefit from either..

Happy to answer any questions.

Stay strong

John in Bangkok.

Live strong (Borrowed from my man Lance Armstong!)

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Oldwife's picture
Replies 4
Last reply 5/18/2018 - 6:59pm

In my family, i do all the research, learn the terminology, meds, treatments etc. etc. DH is alternately depressed, manic, happy, sad, scared, resistant, works like crazy, crashes, reads a lot to deny, wants to talk, doesn't want to talk, and so it goes. He's sometimes fragile and scared of dying, and I'm supposed to be helpful, kind, supportive, understanding, fill the holes, cook whatever the latest foods/diet he's trying, let family know what is happening, help with all projects but not trespass on his control of them. I'm trying, and submitting myself to this journey with all the positivity and prayer i can. We just found out his dear doggy has cancer, and it can't be cured. Dog is the wonderful happiness coach here, and it has been a blow for both of us.

But, I do feel alone in many ways. No one wants to hear distressing 'details'. My heart goes out to all of you, whether you have melanoma or are the family member of someone who does. We are all alone more than anyone can guess. Thank you for listening.

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quickcuda6's picture
Replies 1
Last reply 5/18/2018 - 6:05pm
Replies by: lindanat

54 year old male with Stage 3C  I recognize that the side effects of treatment piece has been addressed many times here but still felt that it may be beneficial to some for me to describe what happened to me with only 3 of 18 Keytruda treatments remaining.  Started Keytruda in Apr 2017 to treat Stage 3C Melanoma.  This was after two surgeries and 10 weeks of daily radiation treatment.  For the first six months, everything was pretty good. Moderate daily fatigue and minor rashes, and then six months into the trial hypothyroidism was discovered.  Went on 125mcg of Levothyroxine to adjust and everything was good.until January 2018.  The day after receiving the 15th treatment, everything went to hell.  Severy flu-like symptoms with constant cough, fever, nausea, night sweats, debilitating fatigue, severe dry mouth, accellerated heart beat, dizziness and a host of others.  After several ER visits and several more to oncologist, they could not determine a cause but tested for many of the usual suspects.  My next treatment (February) was postponed and on March 1, was put on high dose Corticosteroids. . March continued with severe symptoms but also slow improvement.  A host of scans and blood tests were completed to figure this thing out.  There was no diagnosis but a lot of things were ruled out.  In April my Oncologist discontinued Keytruda treatment and disenrolled me from the trial because of the lingering side effects.  The oddest thing about this recovery process is that in early April while I was still on high dose Prednisone, I began losing weight at the rate of 3 lbs per week even though I was (and continue) to eat like a horse.  I continue to lose weight today.  I have now tapered the Pred down to 2.5mcg per day and expect to be off of it entirely by Monday.  A little concerned that my appetite will go away along with the Prednisone.

My oncologist believes that the Immunotherapy triggered an auto-immune disease that he calls Mixed connective tissue disease which, although real, I believe to be a catch all diagnosis that does not really get to the root cause.  The fact is that my symptoms do not fit well in any auto-immune disorder definition.  Will see a Rheumatologist in the next two weeks to hopefully get to the bottom of this.

I provide the above as a cautionary tale for those beginning or currently being treated.  These drugs can cause very severe side effects that will significantly impact your life so do not believe for a second that since you have made it most of the way through treatment without issues, that you are in the clear.  The immune system does not like to be tampered with but these drugs do just that.

Cancer:  April PET scan showed no malignent tumors but several lesions/anomolies in lIver, lungs, and pancreas that are being watched.  My singular hope is that the drug actually did what it was designed to do and that future scans continue to show no tumors.  

Wish everyone here the best.

 

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Scooby123's picture
Replies 5
Last reply 5/18/2018 - 2:27pm

Anyone who as had anemia when on keydruda. What did they have to treat it and did they continue treatment .

Scooby ❤️

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2018 - 12:36pm

My 17 year old son was diagnosed in February 2018 with 2.4mm malignant melanoma tumor when he had a mole removed from his scalp. We have since been through the surgical process, WLE, positive sentinel node biopsy for microscopic melanoma metastasis, and just last week he had his parotid gland removed and a neck dissection. We are awaiting the pathology results from surgery and we will be starting adjuvant immunotherapy, Opdivo infusions, regardless of the results in the next couple weeks. We are Stage 3, but no  subclass yet, pending the surgical pathology reports. I am not a fan of the “wait and watch” approachand I feel the benefits of the immunotherapy definitely outcweigh the risks at this point. He is young and otherwise healthy and I am praying that will work in his favor.  I am a nurse, a neonatal nurse. That is the farthest thing from an oncology nurse. I have submerged myself in research and have read and learned more about melanoma then I ever thought possible.  I have read good and bad, and no matter what I read I find myself just completely overwhelmed at times. My son definitely handles this better than I do. He is a great patient and he amazes me everyday with his strength...one week post op and he is already ready to be back playing sports and leading a normal teenage life... The surgeon is confident with treatment my sons prognosis is “excellent” the oncology team is much more cautious when speaking with us.  I just need to know I am making the right decisions for my child. 

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stevek1959x's picture
Replies 10
Last reply 5/18/2018 - 9:10am

So the big day is this Wednesday for starting Opdivo as an adjuvant treatment.  My onco said 12 monthly treatments.  Whoa!!!  Thanks to the folks on this board I said maybe I should learn to walk before I run so I suggested starting with the 2 week treatment.  I did not get any pushback at all but I was surprised they were moving new patients to the 4 week treatment right away.  Meanwhile, I still have my drain in from the lymph node dissection (3 weeks).  My onco said no problem that the treatment could start with the drain in.  They want me to see a PT/Lymphedema specialist but I thought I should hold off until this drain is gone - right?  One of the nurses said it was almost a for sure event that I would be on thyroid  medication as a result of the Opdivo.  Is this what everyone is experiencing. 

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MelanomaMike's picture
Replies 12
Last reply 5/17/2018 - 11:57pm

Hi Family, well, as i stated, i started my first round of Ipi & Nivo yesterday 5/11/18 and so far so good, today im experiancing minor aches, pretty much my legs, mild, a bit "run down" but thats to be expected soon after a dose at the Juice Bar.After my last bag of Pembro {#7} my legs began to swell & knees where achy, i was prescribed Naproxine & man ol' man! that stuff is amazing for not being a narcotic, thank god cuz it was out of control with the achyness... I pray this Ipi/Nivo works {Pembro did not} cuz somethings gotta give, i need some good news right about now!

 Okay, now my question, can any one give me 1 good reason some folks here at MRF choose to be Anonymous? i dont  reply to them cuz i dont know which Anonymous im replying to..Please better inform me, im a little taken back by this choice....

 Anyways, to all my extended family {Anonymous'es included} be well, keep an animal {or 2} near you at all times, as well as  humor & music close by, it works for me....Mike

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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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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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