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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keepthefaith11's picture
Replies 12
Last reply 7/21/2016 - 4:41pm

Hi everyone. A quick update and then on to some questions. My dad had a PET scan a few days ago and thankfully, it came out clear, with the exception of the brain mets of course. We were all worried, wondering where else this horrible beast would have spread. Now we can tackle "just" the brain mets.
He has 3 more sessions of WBR. Then I am assuming we are on to some type of therapy.

I am with my dad in Europe right now and I am going in to talk to the melanoma specialist next week. It will be an interesting conversation and hopefully we will be on the same page as far as treatments.

The doctor I spoke with today hinted that starting up Opdivo would be premature at this point. Her point was basically that if the disease is under control we shouldn't "waste" it right now. I am assuming they will want to start the BRAF inhibitors instead.
(Not sure I like this passive approach)

These are some questions I would greatly appreciate if someone could give their input on.

1. If you use immunotheraphy drugs, how long do you use them for? And if you discontinue and disease progresses again, can you get back on them?

2. Same question for the BRAF Inhibitors. If we start with the BRAF inhibitors and then move on to immunotherapy, could we go back on the inhibitors again?

3. Does anybody do the BRAF inhibitor by itself anymore, or is it always combined with MEK inhibitors?

4. How do you know when or if to switch over to immunotherapy? I know the idea is to switch over before the cancer find a way around the inhibitors. But how in the world do you know when that is starting to happen?

Thank you everyone for your continued support. It means a lot!

Annie

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Bigdaddy5's picture
Replies 7
Last reply 7/21/2016 - 9:24am

Hi:

Anyone participating in the Polynoma pol-103a trial?  Any info at all on the trial would be appreciated. 

I did search the mpip and saw it mentioned in only about a dozen posts in 4 years. 

Hopefully, you can provide your experience with either considering and / or selecting this clinical trial.

Best regards,

Neil D

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/21/2016 - 9:14am
Replies by: Anonymous, Janner, Ajwells

I just noticed this today. Have no idea how long I've had it so can't say of its changed.

https://imageshack.us/i/pm5EmM5Mp

Since I've not seen it before I'm going to have to assume it's new. Does this look like something to get removed? Or am I safe watching for change. It's aboit 2.5mm 3 max.

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jade1111's picture
Replies 2
Last reply 7/20/2016 - 11:38pm
Replies by: jade1111, Ed Williams

Hello.. My mom had her first infusion 11 days ago. She felt fine till around day 9.. had some  severe cant move nausea (seems to have lifted as she is holding on pills) and bad fatigue and a very angry looking rash on her legs and arms. She is using a topical steroid and claritin. She is currently in a trial.. not sure if she will be able to get infusion tomorrow.. hard to think of her doing that with such a bad rash... and not sure what will happen if she does not get infusion..will she be out of trail.. the trial is good but its complicated feel this time pressure.. though I know they have her safety first.. just so much testing to get into trial.. Venting... Anyway any thoughts on rashes... how long they lasted and doing an infusion with one? Just read in previous post about taking anithistamine at time of infusion.. wonder if she takes consitently would help.

 

Thanks!!!

 

 

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Sorry to be posting again but I have more questions ....

background Stage 3a ~ do not qualify for clinical trial, only 1 lymph node positive, BRAF negative

was told interferon was my only option

was told I "don't want to do Yervoy, Stage 3 dosage too toxic"

 

I called my insurance company to see if any adjuvant therapy is covered by my insurance.

Yervoy ~ 10 ml is covered but needs pre-authorization

Keytruda ~ covered, no pre-authorization needed, $25 for 21 day supply

Opdivo ~ covered, no pre-authorization needed, $25 for 21 day supply

 

Am I mising something?? 

 

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Patrick O.'s picture
Replies 13
Last reply 7/20/2016 - 1:21pm

Hello all. Just diagnosed with stage IV as of 7/13. Am seeing my OCL for the first time on 7/20. Just wondering what are a few of the most important things I need to ask him about.
I've been reading many of these posts and it has been a great source of info and hope.

Thanks
Pat

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jlevang's picture
Replies 3
Last reply 7/20/2016 - 12:51pm
Replies by: Anonymous, mkt, Carver

I'm new to this forum, and new to the world of melanoma. I was diagnosed with a stage 2a melanoma on my thigh in Dec. and had the wide excision and sentinel node biopsy done on 12/31. The nodes came back negative, which was a huge relief, and now I'm trying to educate myself on what I should be doing to prevent reoccurences. Recovery is mostly going well, except for a large lump that developed around the incision near the groin where the lymph nodes came out. There is one firm lump at the top of the incision, and then a larger one running most of the length of the 5" incision. The surgeon said it is likely a seroma, and that he could aspirate and drain it, but that they often come back. He recommends letting it go away on its own, which he said can take weeks or months. I'm hoping someone has gone through this, and has advice, or information about how long it takes, what to do, etc.  I'm having a hard time finding much information about seromas, especially in the groin area. Sounds like they are more common in the armpits. It's not really painful just uncomfortable. Thanks.

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Randy437's picture
Replies 7
Last reply 7/20/2016 - 4:19am

I am now 6+ years NED after mets to brain, lungs and small intestine.  Both brain MRI and body CT + blood work were negative today.  So I'm moving to scans every 6 months from every 3/4 months.  Onc said one factor was that I've never "failed" a treatment - mets were surgically removed (brain met followed up with GammaKnife).  It seems there are no standard protocols for long term stage IV survivors - it's an individual decision between patient and doc.  At ten years, we'll revist (knock on wood).

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A friend with stage 4 melanoma went through Ipilimumab treatment, but he subsequently had some new tumors show up. He was then put on the combination Dabrafenib and Tramethinib. His tumors are now escaping these enzyme blockers. His oncologist is now proposing to test him to see if Keytruda will work for him.

I didn't know there were markers that could predict Keytruda response. What are they?

Thanks for your help.

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BrianP's picture
Replies 3
Last reply 7/20/2016 - 12:57am
Replies by: Bubbles, Georgi524, JoshF

May be some time before we reap the benefits of this but it's comforting to know smart guys like Ribas are working on and making some discoveries on why some patients have some tumors that respond to immunotherapy while other tumors grow and why some patients recur.

http://www.news-medical.net/news/20160713/UCLA-scientists-identify-mecha...

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Aaron's picture
Replies 5
Last reply 7/19/2016 - 7:53pm
Replies by: Anonymous, Aaron, KAF, jade1111, Polymath

Getting my opdivo half of my treatments today and got warm sensation accompanied by rash during treatment.  Got a bunch of benedryl, Pepcid and something else.  No we are pushing the meds at 1/2 the rate 

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/19/2016 - 5:22pm

My father in law was diagnosed 5 years ago with stage 3b melanoma. Last summer, it moved to his liver and intestine. In May, his pet scan revealed 2 brain mets in the right and left frontal lobes. He had radiation done within 2 weeks, targeting the two lesions. On July 5th, he had a MRI to check on lesions since undergoing radiation. The smaller tumor showed no regression or progression. The larger tumor showed significant progression of 1cm. He met with a neurosurgeon yesterday and surgery is not an option. He has to wait another month for another MRI and to get more information. Medically, he cannot have another before then. He is extremely lethargic and low brood pressure. Dr said to contact him if feeling symptoms of tumor growth. He is currently on opdivo infusions that have significantly helped tumors in liver-none lighting up. He still has the cancer in intestine. I'm very concerned about prolonging treatment, knowing brain mets are fast growing. Any suggestions? My in laws stated that they will not get a second opinion. Anyone know of helpful clinical trials that involve brain metastases? Thank you so much! 

 

Blessings to all! 

 

 

Libby 

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ecc26's picture
Replies 4
Last reply 7/19/2016 - 3:21pm
Replies by: ecc26, jamieth29, JoshF, Polymath

Been a pretty rough week… or so.

Had a pretty good week with family at a reunion from the 3rd to the 9th except for tripping and falling on the sidewalk on our way to a parade on the 4th and badly skinning my knee. Between that and some of the medications I’m on I had a harder time doing things like getting down to the water (steep stairs and supposed to stay out of the sun). Felt at times a bit like the grinch who didn’t want to do anything. My little sister and her fiancé got married on Thursday and we had a great reception Friday with LOTS of great food, family and neighbors. We also celebrated my parent’s anniversary (late, but that’s ok) with a special dinner out. Lots of good things happened that week. 

Unfortunately, as the week went on, I started to notice a return of my back pain, despite the fact that I was walking and doing my physical therapy stretches/exercises. That didn’t help my grinchiness and I attributed it to the overly soft mattress we were sleeping on at the rental house. Between my skinned knee (hurt whenever anything touched it) and my back I was not sleeping very well and was pretty tired and grumpy by the time we left on Saturday morning. Made worse by the thought of a long car ride (not great for my back).

By the end of the week we had eaten so much and so much cured/salted meat (bacon, sausage, etc) that my feet and ankles were swollen, so after picking up our diabetic cat from a friend and doing some housework (good amount of NSAIDs on board for my back) and running a couple of errands (empty fridge) I settled down on the couch to elevate my swollen feet and apply some of the techniques I learned from the physical therapist for lymphedema in my arm to try and clear the fluid from my feet/ankles. Relaxed and watching TV I was interrupted by another focal motor seizure in my right arm. The last couple had been pretty mild and short lived, so other than being annoyed that they were still happening despite the anti-seizure meds and having the brain mets treated, I didn’t think much of it. I already had an appointment with my local oncologist coming up on Friday. Assuming no other problems, I would discuss it with him then. 

Problem was, it wasn’t stopping- it would ease up and I would think it was about to stop, then increase in intensity and keep going. No idea how long it went on for, but I got scared and called for my husband (upstairs). He found me on the couch and called an ambulance (poor guy, can’t even imagine how he must have been feeling). Of course right after he hung up the phone it stopped, but I had no use of my right arm at all it was so fatigued. The ambulance arrived, but given that it was done we opted to just have my husband drive me down to the ER for evaluation. The EMTs took my blood pressure, My husband had to sign all the paperwork both for the ambulance and at the ER and we now have a $170 dollar bill for the EMTs blood pressure reading (which was a little high, but not abnormal). Just kidding, I know the fee is for responding to the call and would have been much higher had I taken the ride.

So, spent Sunday evening in the ER again, where they did a CT and lots of bloodwork. That showed that I had low potassium, magnesium, and that I was anemic (shocker-I've had anemia forever). They infused 2mg Mg, almost forgot to flush my port before de-accessing it, and gave me a couple of pills to take to get my potassium back to normal. The neurologist on call reported that low Mg levels can cause seizure activity, so who knows- maybe that was all it was. In the mean time, several hours on an ER bed did nothing good for my back, which felt like I had been set back all the way to when it started last fall.

Lots of NSADs later trying to get my back pain under control, and, surprise surprise, started having GI issues; you know, because steroids and NSAIDs go so well together. Typically a day or 2 of carefully timed NSAIDs and I don’t have any problems, but with the continued setbacks with my back pain the NSAID use was going on longer than expected. I had some narcotics I probably could have used, but given how loopy and nauseous they make me and how non-functional I become I tend to avoid them. It’s better for muscular problems to be able to get up and move around than to be stuck in a non-functional state- hence the preference for NSAIDs.

 
Seemed like an outflow obstruction issue in my stomach where anything I ate or drank would sit in my stomach forever. Also, with the complete setback in my hand/arm I was frustrated by not having the dexterity to even cut my own meat- my husband had to do that for me like I was a child. As the week progressed I started having what seemed like gastritis/ulcer symptoms in addition (assumption NSAIDs and steroids together longer than normal).
 
Appointment with local oncologist Friday afternoon where I discussed the changes and setbacks. No big surprise, he wanted me to stop the NSAIDs and go to narcotics only. After some arguing about being able to function and nausea associated with those, we compromised on narcotics at night when I’ll be sleeping anyway and tylenol or advil during the day to be functional, but only if needed for back pain. Looking at the bloodwork from the ER visit and considering the other symptoms I’d developed he also decided to hospitalize me and do a blood transfusion and a chest/abdomen/pelvis CT. Can’t say I was excited about any of that and was pretty grumpy between the side effects of the meds I was already on, lack of sleep from the back and stomach pain and having to spend an unexpected night in a hospital bed, which I knew would not help my back. My poor husband had to go home and get me pj’s and I had him stop and get sandwiches for after the CT. I really do feel bad for all that I put him through.
 
Checked in to the hospital, they accessed my port, but then tried to put in a peripheral catheter for the CT- which I refused to let them do (that’s why I have a port). Drew blood, started the blood transfusion as I started drinking the GI contrast, and started going over a questionnaire and possible side effects from the transfusion. The nurse wanted a complete history of my surgeries, etc (all in my file, should have been able to look that up) with the end result being that they came to get me for CT before any of that was done. Nurse said we’d finish everything when I came back, but when I came back nothing else happened and there was no paperwork about the blood transfusion left in the room for me to look at. Shift change was happening and I was more interested in whether or not I was allowed to eat, so by the time I thought about it there wasn’t much to do as the transfusion was continuing. 
 
They gave me some injection for the stomach pain, which was great and allowed me to eat the sandwich. My husband had to go home around 9 to deal with our diabetic cat, and after that the overnight nurse gave me an injectable anti-nausea followed by a narcotic, which hit before he was done injecting it. It certainly does relieve pain, but boy was I dizzy. Thank goodness for anti-nausea meds. I just basically went to sleep.
 
Hospitals are not known for being restful places and between the frequent vital signs checks for the transfusion (the 2 units didn’t end until after midnight) and the regular vitals checks every few hours, I got very little sleep. Local oncologist came in Sat morning, said the scan did not show any evidence of an outflow obstruction and no bleeding ulcer, but something about a segment of intestine that was doubled back on itself (still not quite sure what this means) that was probably causing some of the gastric issues. He indicated that the GI contrast often resolves that. It hasn’t as far as I can tell.
 
I was discharged with a script for a muscle relaxant, the narcotic I had gotten at the hospital and the anti-nausea medication. Of those 3, which do you think the insurance had a problem with and I couldn’t get filled? That’s right, the anti-nausea medication. In addition, pretty much all the medications I’m now on (except the steroid) cause dizziness and/or drowsiness. Great.
 
Along with the Ipi/PD-1 infusion (second infusion happening as I type) getting IV Fe instead, and after a conversation with my oncologist this morning before the infusion started, the Dexamethasone will be cut back to 1mg once a day instead of twice, so hopefully that will help my stomach.
 
In general, if I didn’t have the back pain that keeps getting exacerbated then I probably wouldn’t have the stomach issues. My knee at least is healing well. but I really could do with at least one less problem and a few less pills in my life. I’m tired and frustrated with everything and haven’t had a moment to explore what might come next if this doesn’t work. I’m also overly emotional from… who knows what- lack of sleep, stress, frustration, medications, all of it… and who knows what side effects I’ll get from this second infusion of 2 drugs I’ve already failed. Can’t wait. Hopefully I’ll get the back pain settled, the follow up MRI in a few weeks will look good and I can get off some of these pills. Right now that may be the best I can hope for.
 
If you’ve read all the way through this, you’re probably feeling drowsy yourself. I apologize for that. 
 
 
-Eva

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stevecathy's picture
Replies 12
Last reply 7/19/2016 - 6:32am

Wanting advice , I've been reading on the benefits of turmeric for melanoma. Wondering if anyone has had results. Currently my husband is on mekinist and taflinar and doing well . Has some joint and muscle pain and very fatigue. He does take several supplements, co-q10, d3, vitamin b complex , fish oil. After reading thinking of adding turmeric. Anyone advice is welcomed . Thank you

Cathy Jewell

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