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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jas02r's picture
Replies 7
Last reply 10/20/2015 - 6:52pm

Dad was diagnosed stage 4 on 7/22. His only treatments thus far have been2 rounds of opdivo, which he had to stop due to liver levels. Fast forward to last tuesday he had a preforated stomach ulcer so emergency surgery was done and he recovered very fast. On saturday morning he had a seizure and ct scan ahowed 4 or 5 brain mets and blood on brain. He lost the ability to use reconizable words for about 2 days but due to meds reducing brain swelling his speech is good again. Met with a radiologist onc yoday said they could start whole radiology tomorrow. Problem is his liver is more tumor then liver and docs say he is in liver failure is very jaundice and has high ast and alt levels. On top of all this his appeal for mekintist and taflinar were approved friday late. So should we do the brain radiation and then start pd1 combo or just start pallative care. I'm lost as i sit by my diying dads icu bed side tonight.

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Sflynn's picture
Replies 8
Last reply 10/21/2015 - 7:38pm
Replies by: Sflynn, kylez, Patina, Mat, Anonymous

Hello everyone.... I am new to the site and I am here on behalf of my husband. He was diagnosed with stage 4 metastatic melanoma in august. Multiple catscans and pet scanned revealed 2 mets in his lung and 10 in his brain. As of today..they have no source of orgin. 

He had 10 whole brain radiation therapy treatments to date and we have 2 Stereotactic treatments scheduled for this week. 

He also had 1 opdivo treatment but unfortunately he developed a severe rash that 4 weeks later we are still battling  to clear up. No new treatment has been discussed. I feel that everyday that goes by without a treatment is precious time waisted....

Looking for other treatments that may help him... any suggestions????

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mdoh's picture
Replies 5
Last reply 10/26/2015 - 9:58pm
Replies by: kylez, mdoh, Kim K, Christine.P, Jubes

Hello all - I was diagnosed with stage 2a melanoma in June.  Oncologist did a baseline CT scan in August and saw some spots on my lungs and thyroid, so I'm going back for another CT scan/ultrasound in early November.  Scanxiety is building.  My question is - Do I need to get my yearly mammogram if I'm getting these CT scans? Would prefer to avoid any unnecessary radiation.

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Hi all,

We're anticipating the FDA will approve TVEC for the treatment of advanced melanoma within the next few weeks. We were contacted by a reporter who is writing an article about the approval and would like to speak with a patient who has taken TVEC. If you have taken TVEC and would like to share your experience with the reporter, please contact me at His deadline is tomorrow, October 20, 2015.

Thank you,
Lauren - MRF

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emagdnim83's picture
Replies 4
Last reply 10/21/2015 - 10:07pm

So I've posted 2 topics about my fathers condition in the last weeks. Unfortunately i think he has now reached his final days. 

Last Thursday he got an infusion with human albumine. The next Day (Friday) he was extremely exhausted, short of breath and had a hard time even to get out of bed and go to the bathroom. In the evening we noticed that he forgot some things  - he couldn't remember some names and became a bit confused. First, we thought it was because of his exhaustion or tiredness or maybe a side effect from the infusion. On Saturday, things got a bit worse (confusion/blurred sight, abdominal pain) but he could speak and walk at least a bit. On Sunday he stayed in bed most of the day and spoke very slow but things got then much worse so we called in a nurse from the palliative care who gave him strong pain meds because he mainly complained about his severe abdominal pain. He slept until the evening and then got up a bit but he was totally confused. In the night it was a nightmare. He was then brought to the hospital early today morning - we now think he has got a stroke. he can't even recognize his children and is totally confused and not able to walk.

So now we can only wait, we don't have any new information yet. 

Please everyone, if you notice things like confusion, blurred sight or not being able to walk - do not only think of side effects from cancer therapy (he was on nivolumab) but also check for strokes!



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Is anyone else getting messages that say you are blocked from making comments or a post?  I am now getting this message after changes were made over the weekend.

If you are getting blocked or your responses or posts are missing tell MRF about it please.

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Eileensulliv's picture
Replies 7
Last reply 10/24/2015 - 1:03am

I was diagnosed in January, in transit met in my back was removed in February. Mets in my lungs, bowel, and lymph nodes being treated with the ipi/nivo combo trial in March. I was only able to tolerate one dose of the two meds, and once my thyroid was normalized and I was weened off prednisone, treatments of just nivo resumed. CT scan in June showed shrinkage of just about everything, and scan in August only mentioned the mesenteric lymph node! CT scan last week shows the lung mets again, as well as the mesenteric nodes. The lung mets are unchanged in size from June, but are less conspicuous. Mesenteric nodes are unchanged. I questioned why the August scan report made no mention of the lung nodules, and I was told it's because the wrong scan was ordered, so the lungs weren't scanned. But apparently they scanned enough that the bottom of the lungs are in the scan, and the nodules are so small the radiologist didn't even see them. That answer just doesn't sit well with me, but I'm focusing on that unchanged means stable, and overall, I have a very good scan report!

The biggest problem I've been having is that I have pretty bad reactions to the CT contrast, sometimes landing me in the hospital. We thought at first that it was a combination of the contrast and the nivo, since I was doing scans on the same day as treatments. But for the scan last week we decided to do it on the opposite week of my treatment, to see if I could tolerate just the ct contrast. It turns out I couldn't, so now we will have to make a decision on how to scan me from now on. The option we seem to be leaning towards is premedicating me with prednisone 24, 12, and 2 hours before my next scan. 

With every adverse reaction came a delay in treatments. I just had my first treatment in a month (car broke down on my way to treatment two weeks ago) and I can't stop itching! I'm itching on most of my body, but especially my hands, arms, and torso. Has anybody experienced this, and if so, what worked for you? Thank you!!!


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ToddC's picture
Replies 5
Last reply 10/23/2015 - 2:57pm
Replies by: DZnDef, ToddC, Gene_S, jamieth29

Hi Everybody, I haven't posted here in a long time. I was stage 4 mel with multiple tumors about 4-5 years back, mostly my tumors were dealt with by surgury or gamma ray. Originally I was diagnose as stage 4 way back in 2006.  I never received any real medicine such as interferon or yervoy although I tried to get into the original trials for ipilimumab back in 2010 but was rejected since I had the wrong genetic markers.  Anyway I just wanted to check in and let everybody know I'm still fine and have been NED for about 3 years now, my bloodwork is fantastic according to my Onc, blood sugars are down around 90 now in the morning from about 115 before, LD reading is low 30's now... before was over 70, lymphocyte are upto 25% wheras before was about 11-12%, vitamin D level is over 60 wheras before was about 18 (lol), PET scans have been clear since 2012 and my Onc recently told me we would cease these and only check bloodwork from now on. Frankly we are both amazed at my progress since most patients seem to have poor prognosis with Mel.

Before what? If you recall I was the vitamin D guy, I remember James Sennel from way back and followed his advice which seems  to have worked great for me.  I began using a vitamin D lamp (made by Sperti) about 3 months before my final episode with this stupid inflammatory condition called melanoma. I believe it was primarily responsible for getting rid of this problem, I used to take the vitamin pill form but the lamp really seemed to get my levels much higher. I think coupled with using the lamp, I stopped bathing the skin oils off using soap (only trunk arms and legs) from the areas I used this lamp on. Many people told me this would actually cause by skin cancer to grow like crazy since this is a UVB source lamp but it did not, in fact my dermatologist has not seen any new weird looking moles in at least 2 years now.

Why did I do this? One day I googled how vitamin D pills are manufactured, you should also do this. You will find that the substance called vitamin D is not really a vitamin at all but is mostly made in or on the skin by a particular wave length of light (UVB) causing a photochemical reaction which coverts the cholesterol in our sebum into a hormone precursor which is then reabsorbed back into the body and converted in the liver into what we call vitamin D along with a multitude of other endocrine hormones. Commercial vitamin D pill actually come from sheep sebum (lanolin) which is doused with UVB rays, sorry I know that is pretty disgusting but is enlightening as to the way this substance is supposed to be made by our bodies. I figured I was having some sort of problem absorbing this pill form which prompted me to try to make this substance naturally.

In addition to using this lamp to generate a lot of vitamin D, I cut out nearly all dairy products from my diet, I was trying to reduce or remove casein protein mainly since it is highly inflammatory and actually a very sticky substance which I think clogs up the lymphatic system. My theory is this improves immune responsiveness since the lymph system and cancer cells are more easily identified and eliminated. In addition to no dairy, I quit using fluoride toothpaste and started a mineral supplement. That was pretty much all I did aside from live a normal life, quit wearing sunscreen and get enough good nutrition and exercise.

I believe all of us have the ability to kick melanoma's butt and just wanted to encourage everybody with my story which is true, it is possible to beat this condition. Please consider the above advice, none of what I did will interefere with any of the meds or other stuff doctors want to do, this protocol is very inexpensive (aside from the lamp which is about $400) and makes you feel you are taking positive steps in your own recovery rather than feeling helpless or dependent on the doctors. Oh and about that whole sunscreen debate... you should be aware that wearing sunscreen prevents 98% of your natural vitamin D production.

Good Luck!!

Todd C

Los Angeles CA


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DennysGirl's picture
Replies 7
Last reply 10/20/2015 - 5:50pm

Hubby is stage 4. Last week had a lot of pain and they upped his pain meds to Hydromorphone and Fentanyl Patch. He also had a new PET scan which showed his cancer is growing with a vengeance! It had shrunk as of August but now his new PET scan shows double the amount as he had in May when first diagnosed. He had his first Opdivo treatment 2 days ago. The constipation is really becoming a problem. Nothing seems to help. Hoping someone out there has a great cure for constipation. We have tried home enemas, warm prune juice, colace, miralax, and even had a shot in the ER. Nothing seems to be moving. Please help. Thanks. 

Renee~loving wife fighting for her hubby! 

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msitz's picture
Replies 2
Last reply 10/18/2015 - 7:01pm
Replies by: Patina, Polymath

Part 1 of the story is here:

We just got some very exciting scan results back. In brief, my dad was diagnosed with Stage 4 Melanoma in March of 2015 and had several near fatal complications before he started responding to Keytruda. He has tumours in his abdomen, lungs, lymph nodes and brain.

This is the result of his most recent CT abdomen/pelvis:

"There has been interval significant disease improvement. Example - The largest left flank small bowel mass which previously measured 6.4x7.6cm now measure 3x4cm and a right lower quadrant and another small bowel mass which previously measured 3.7x4cm is now not definitely visualized. Left flank peritoneal nodule which previously measured 4.2x4.4cm is not definitely visualized."

That means that his biggest tumour is about half of what it was and the 2nd and 3rd largest tumours are gone! There were several other small tumours that have all significantly shrunk too. In March my father was given 2 months to live and now his tumours are 70% gone. His quality of life is excellent and he is planning a trip to South America for next year.

We could not be more thankful. There is hope to those of you with a stage 4 diagnosis with a very high tumour burden. His lung tumours are also responding very well, as is his brain tumour. Since starting Keytruda 7 months ago there have been no new tumours and everything has shrunk.

- msitz

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Wanted to let everyone know that it looks like a ton of responses were approved by the moderator this morning.  As far as I can tell new topics and comments from as far back as last Monday or Tuesday are now visible.

If you posted a new topic or replied to one you should check to see if it is now visible. If it is NOT go here and reply to Adam's post to let him know..  - You might also let him know about any other issues you experienced. 

To bypass this moderation phase you can write your response, copy it and then send a email directly to the poster if they are a registered user and the post is not Anonymous. To do this click on the persons user name and then click the "Contact" tab.  As long as the person is set up to receive emails they should be able to receive your response without having to wait for a moderator to approve your message.

Good luck!

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I too made a comment to another post, to which it has been over 24 hours for it to appear.  Folks that post here and that want help deserve better than that!


Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Adam-MRF's picture
Replies 11
Last reply 10/17/2015 - 9:53pm

Hi everyone,

In recent weeks we implemented significant updates to the software that monitors for spam posts on the MPIP forum. You may have noticed some of these changes on the user registration and sign in page, while others took place behind the scenes on the back end of the website. Part of the update was the addition of a new, very powerful spam filter that will continue to improve with time. With the new filter in place you may, for a short period, notice a delay in when new posts appear as the software "learns" and refines itself. We will continue to monitor this process to minimize any disruption and smooth the transition to the improved system. We thank you for your patience and your feeback is always welcome as we work to ensure the best and most helpful experience possible.


Adam - MRF



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Hi All, 

Today marks 2 weeks on taf/ mek combo and, overall, not feeling terrible.  I had one evening with vomiting, a fever spike, massive chills which was resolved with tylenol and sheer exhaustion from shaking!  

Other than that, the only complaints (but I am NOT complaining! LOL!) are fatigue, not bad but I nap during day while kids are in school, and - this is weird - while my body might feel fine temperature-wise, my face feels like it is on fire! Crazy, right? I also seem to feel very full all the time.

I see onc on Monday and will let him know. I am wondering how long before I will have scans again?

Hope you all have a wonderful weekend!

Do not fear tomorrow, God is already there.

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DZnDef's picture
Replies 6
Last reply 10/19/2015 - 11:58pm
Replies by: DZnDef, Linny, Anonymous

On today's episode of The Quest for the Cures (episode 3) there was a long segment devoted to melanoma and Rigvir which was developed in Latvia and is approved in Latvia and Georgia by those countries' versions of the FDA for the treatment of melanoma.  The show interviewed several long-term survivors of melanoma who used Rigvir (which is a virus that replicates inside of cancer cells, destroying them while leaving healthy cells alone).  One survivor was too weak to get out of bed but her parents drove her from St. Petersburg, Russia to Riga Latvia for treatment and now she is fine.

I was thinking of Artie while wathcing this as he has tried so many things with limited success.

I'm just curious if anyone knows the status of this in the US.  Is anyone attempting to get it approved here?

Maggie - Stage IV (lung mets unknown primary) since July 2012

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