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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FaithRun's picture
Replies 2
Last reply 6/12/2017 - 3:08pm

I am now 5 days in take Mek/Taf.  Aside from the headaches and body aches it has been working fantastic!  One of my most noticeable things was the reduction and dare I say, obliteration of the tumors on my scalp!  I had over 2 dozen nodules/tumors on my scalp and all of them are gone except just a little itty bitty bump where the largest one was.  The same for my arm pit and groin.  Although I can't see or feel inside of my bones, the bone pain is greatly lessened.  There are a lot of things that I could summise or guess, but so far I think it is working. 

I did land myself in the hospital yesterday due to a fever and nasty headache.  This is a reminder to stay hydrated and even when you feel too horrible to eat and drink... do it anyway.  Due to the treatment my white blood cell count went down to 2.4.  Not great, but not bad enough to keep me in the hospital. 

 

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smyers5015's picture
Replies 3
Last reply 6/12/2017 - 11:55am

Hi,

I'm a 52yr old male, and In April I was diagnosed with metastatic melanoma, a 5.1cm tumor on one of my adrenal glands and a small 13mm tumor on the right lower lobe of my lung.  They were unable to find the primary.  Last week I received my 2nd cycle of yervoy/opdivo and have few lasting side affects... mostly fatigue but occasionally a fever or sore muscles/joints.  Although I am letting my oncologist suggest the course of action, I know there are things I can do to try and help myself, such as taking the correct vitamins and supplements to help my body fight the tumors.  Currently I'm taking a men's multi, 1000iu D3, Tumeric, and Resveratrol.  Are there any suggestions out there that could/would make this regimine more theraputic?

 

Thanks!

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MustangLT's picture
Replies 10
Last reply 6/12/2017 - 11:48am

I started the clinical trial S1404 Randomized Comparing Ipilimumab 10mg to Pembrolizumab. I got randomized to the ipi arm of the study. I had my first infusion on June 19th. About 4 days later I started breaking out in an itchy rash, initially on my hands and abdomen. It got worse and I was put on a 5 day regimen of prednisolone. It stopped the itching until I went off, about 5 days later went back on another dose of pred for 5 days and my next treatment has been postponed.  I know itching and rash are not the end of the world but living with constant itching is very maddening and crazy making! The rash is now over my back, arms, scalp, arms..
I am now trying to decide if I should try another treatment and itch for another month or more or go back to watch and wait! Have also had touches of diarrhea but nothing overwhelming. I'm really on the fence right now, thinking I should give it another chance, then again, not crazy about the risk potential. I'm in very good health otherwise!

My original diagnosis was a malignant mole in the center of my back, removed 7 years ago. 2 years ago, left axillary node dissection with 2 positive nodes, this February, right side axillary node removal, 2 positive nodes. Currently NED which qualified me for the clinical trial.

Any thoughts?

Lauralea

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If it's Mondy in June....it is time for more ASCO...so here you go:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-radiation-plus-ipi-plus-cd47.html   

Where would ratties be without their mousies????  Have a great day.  Celeste

 

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Replies by: magnus31, TP35, Patrisa, geriakt

Hi all,

I have recently acquainted a young Ukrainian couple whose husband is currently fighting against stage IV melanoma. As the Ukraine health system does not accommodate for any treatment or clinical trials for patients in this stage of the disease, the couple is now desperately looking for any sort of treatment option or clinical trial abroad which could accept them.

Financing is an issue here as the couple woudn't be able to afford to bear the cost of current immunotherapy treatments like Ipi/Nivo/Pembro.

Please all would you know whether skin cancer trials in the US, Canada or elsewhere are exclusively reserved for tax-paying nationals or whether any ongoing skin cancer trials would accept their participation?

Any ideas warmly welcome at this point.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/10/2017 - 4:55pm
Replies by: betsyl, casagrayson

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ReallyAgain's picture
Replies 8
Last reply 6/10/2017 - 2:40pm

Quaking 5 day headache, saw the Doc, wants to try steriods for one day.  Doc says the steriods can counter act the effectivness of Opdivo.  So far we have had one treatment, a cocktail mix of Opdivo and Yervoy. No side effects for the first two weeks then BAM! Nailed with this 5 day headache.  Has anyone else delt with this?

 

Thanks in advance for any thoughts!

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Bubbles's picture
Replies 1
Last reply 6/10/2017 - 2:06pm
Replies by: jahendry12

I've been yelling about the merits of radiation WITH immunotherapy for a long time.  Now, there's this:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-hypofractionated-radiotherapy.html  

Wishing you all a great weekend.  Celeste

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AliCat61's picture
Replies 6
Last reply 6/10/2017 - 1:17pm

We have encouraging news. Pet scan from yesterday shows that tumor in parotid gland is no longer there!!! The nodule on left lower lobe of lung that was 1.8 cm in January is now 1.3, so it is responding, just not as quickly as the other one.
There is a bit of concern about a left pleural effusion (excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs) that is slightly increased in size from prior chest ct on 5/22/2017. There are also "increased reticular opacities in the posterior right lung base" that are concerning, but that area did not "light up" so it's probably just related to his recent lengthy bout with pnemonia.  An area near the right scapula (shoulder blade) did "light up" and a "small metastatic lesion can not be excluded".  With that one, we will just take a wait and watch approach and see what his next PET SCAN looks like. He will probably have them every 3 months for awhile.
He did not receive an infusion of the Yervoy, as his doctor is sending him for an echocardiogram to determine what's going on with heart & lungs first. We will see him again next Friday on the 16th after he has results of echocardiogram to discuss next steps.
It is "possible", depending on what they find out about heart/lung issues and causes, that he may get the last dose of the combo treatment. I say possible because unless they convince ME that his heart & lung issues aren't related to the treatment, I vote for not getting it. Our oncologist was at a conference last week and the Nurse Practioner and Dr. Meshad both stated that if the heart and lung issues are a result of the Opdivo/Yervoy infusions that a 4th infusion could cause lasting and irreversible damage. That is not a risk that I am willing to take and hopefully it not one that Roy is willing to take either.  Many people aren't able to complete the full 4 doses of Opdivo/Yervoy due to side effects. It's my understanding that current studies do not indicate a significant difference in longevity or recurrence among patients who had 2 or 3 doses  and those who had 4.
Bottom line, next Friday he will either get an infusion of the Opdivo/Yervoy combo, or he will get the first of an indefinite number of bi-weekly Yervoy infusions. The single medication infusions with Yervoy have been shown to have far fewer and less severe side effects.
Overall this is good news. It looks like he's currently winning in the fight with melanoma. And I think that I have finally have the full attention and cooperation of ALL of his doctors. I know that working in healthcare in any capacity isn't easy, but it is my personal belief that if you are so burned out that you no longer genuinely care about your patients you need to take an extended leave of absence. I told his oncologist today in no uncertain terms that while he might look at Roy and see a 70 year old man in whom heart and lung issues should not be surprising, that I know my husband better than anyone else. I know what is normal and what is not. His breathing has not been normal or even anywhere in the vicinity of normal since he first started this treatment. If he can't walk to the mailbox and back or take a shower and dress without labored breathing, IT'S A PROBLEM. What is the point of saving him from melanoma if you allow him to die from something else that is treatable? This is the second time during our journey with melanoma that I have had to call a doctor out for not listening and not caring. I am happy to report that in both cases they responded favorably and completely changed their attitudes and began to do the things that they should have been doing all along. It's sad though, that they had to be reminded. My husband may be just a chart number to them, but he is everything to me. He is the love of my life, and my best friend. Doctors should never lose sight of the fact that each and every patient is important to someone and they should give each and every patient the same quality of care and compassion that they would show to a member of their own family.
Rant for today concluded. Thank you for allowing me to vent so I can maintain an appearance of calmness and steadiness for Roy's sake. Be blessed.

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Scooby123's picture
Replies 5
Last reply 6/10/2017 - 11:22am

Well pet scan results back, everywhere I had Mel  before treatment did not light up. Area did was lymph nodes in chest. Not had any involment there before. Christmas  scan showed nodes up 2 . April scan bit bigger. Consultant said nothing on scans there before ippi treatment 2015. To confirm what it is biopsy of nodes in chest.

 

Any one had biopsy in chest lymph nodes and how was it .

scooby❤️

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Bubbles's picture
Replies 3
Last reply 6/10/2017 - 11:20am

As promised, another post on a "novel therapy".  Here patients were post anti-PD-1 or anti-PD-L1 and many were post ipi as well:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-anti-lag-3-plus-nivo-for.html  

For what it's worth.  celeste

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gossteach's picture
Replies 21
Last reply 6/9/2017 - 7:49pm

Hi- I am new to this forum, but have learned so much from all of the info that has been posted. I am in my fifth month of interferon treatment for stage 3B. I feel like the symptoms are getting progressively worse as I get further along....I have joint pain, headaches, loss of appetite,fatigue, and I'm staring to notice myself being very irritable, which isn't my nature. I guess I thought I would get used to the symptoms and feel "normal"by now, but that's not the case. Some of you have stopped interferon due to side effects....how did you know when it was time to stop? Is it typical for side effects to get worse in the later months of treatment?

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jbronicki's picture
Replies 5
Last reply 6/9/2017 - 6:53pm

I'm going to take my own advice that I give others, that it never hurts to post good news for our community, but I do it in honor of Josh.  Josh is literally the reason I'm here on this board, when my husband was first biopsied at his regular dermatologist, there was a comment in the pathology report he handed me that Saturday night he told me he had Melanoma and the initial report said possible Primary Dermal Melanoma (by the way, our oncologist at MD Anderson won't talk about that!).  Everything else on the pathology report was horrible so I totally held on to the one ray of hope.  So of course I googled it and up popped Josh's comment from 2011 and I clicked on it and landed me here on this forum.  I needed any hope I could get and that came in the form of Josh.  

It's so ridiculous that I get good news on the day that Josh leaves us.  I'm as angry as those who posted  I will honor him by running with these results and living each day that we have.  

I just spoke with Dr. Amaria and my husband John's scans were clear (CT head, chest, and abdomen).  It's been a year since his last scan so I was convinced everything was going to be bad (and he's had headaches lately, we forget that you can have a headache and it's not a tumor!) and had multiple panic attacks this week, but she quickly said all looks good.  That puts us at 3.5 years NED.  

Thank you Josh.  I'm so sorry for your kids, wife and family, they lost so much.  Because of what happened and your MPIP friendship, I'm hoping our family can run with melanoma NED for a while, need to drop off the board for now. I love all of you dearly and hope for nothing but good news for all and forever.  Semper Fi Josh and godspeed.

Jackie

 

Jackie <3

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Scooby123's picture
Replies 6
Last reply 6/9/2017 - 2:15pm

Hi all, Can you please give me a time scale on waiting for pet scan results. I had mine on 25/05/2017 not got results back as yet. I have called nurse yesterday not heard from her as yet. 2 weeks now .My next appointment and scans will be August but this scan was ordered due to chest lymph nodes up .

Scooby x

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Hammers's picture
Replies 7
Last reply 6/9/2017 - 9:44am
Replies by: Gene_S, Joycem, Anonymous, jahendry12, jennunicorn, SABKLYN, CindyCo

I've been lurking in the shadows and wearing tons of sunscreen.  I have not had my VitD level checked yet, but am still going to suppliment.  I am 32 YO male.

Thanks,

Adam

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