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.

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Hi guys,

I have been very busy in the past month and a half and haven't been on the site.  I moved and now just started a new job.  All is great and I am enjoying life and the nice weather.

I just scanned again and found out today that all is perfect.  I feel so lucky!  But again that questions pops up....how much of Keytruda is too much?

I heard from my doctors that they have found that of 61 patients that have come off of Keytruda, only 2 reoccurred.  Those are great odds right?!?!  Seems as though the drug is doing a great job of re-training the body to fight off Melanoma.

So what are your thoughts and what have you found?  And I apologize if you all have already discussed this in the weeks following the ASCO meeting, I missed the conversations and am just trying to feel out peoples thoughts.

Thanks so much and all the best to you fighters out there,

Laurie

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/23/2016 - 3:30pm
Replies by: Alce123, Janner

Hello!

Just a quick question for anyone out there who might have had a similar experience.

On 06/28 I had a punch biopsy of a mole on my right leg. The path report came back positive for melanoma depth of 0.44mm, no ulceration, mitotic rate of 0.

On 07/13 I had the rest of the lesion excised. My surgeon wanted to do this before the WLE to get a full path report before destroying the lymphatic flow in case I needed a SLN biopsy.

I called today for the results because the anxiety was killing me. Turns out the PA my doc usually works with had a baby yesterday so I got her very fresh replacement. Anyway, the PA said I'd that I'd have to discuss it with my surgeon and was confused because the report came back as "no evidence of residual tumor in specimen."

I'm confused since the original path report said the edges WERE involved (but that it had clean deep margins).

Don't get me wrong, I desperately want this to be true but how likely is it?

I have an appointment on Thursday morning with my surgeon.

Alc

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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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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 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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Ajwells's picture
Replies 9
Last reply 7/22/2016 - 7:07pm

I talked to my medical oncologist last week about starting Yervoy for adjuvant treatment. I decided it is the right choice for me with the research I've done and me being only 27 with all of these years ahead of me for this to come back. I know all of the statistics and the decision wasn't made lightly. But she had told me we would be waiting at least another month or so to get started. I got a call today and they scheduled my first infusion for a week from tomorrow!  Now I'm getting a little nervous. 

Are there any things from personal experiences that I need to know to get ready?  Things I should avoid? Alcohol?  With my children in daycare illness runs rampant in my house. My best friend's wedding turns to be the weekend after my third infusion and I'm worried about that.  Is it okay for me to take my Klonopin the morning of treatment?  I mean yes. I should probably ask my doctor. But I'm wanting personal experiences I guess. The first infusion is pretty mild right?  You just do the thing and get on with your day?  If I'm going to start feeling fatigued and sick is it going to happen between my first and second treatments or does that pretty much start after the second and third?

i want to work SO BAD. Especially with our busiest time of the season coming up in August and September. My counter is counting on me to get our numbers back up. And if I do get some of these side effects that prevent me from doing my job the way I need to I'll let them down again.  

I know in my heart I want to do this. Even if the chances are only 25% better. I'll take anything to not have to go the last three months of my life again. 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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JoshF's picture
Replies 14
Last reply 7/25/2016 - 11:31am

Justa quick update and a few questions. I had an MRI on pelvic area to see if what showed on May Pet Scan was indeed Bone Mets. Confirmed so I had bone scan yesterday to see if it is anywhere else in bones. I have an appt with Radiation Oncologist Thursday in the hopes we can add some radiation in with the ipi I'm doing before I head back to Houston in early September for Adoptive Cell Theraphy. Needless to say my anxiety has gone up another level. I keep wondering if my shoulder has it, my right elbow, my ribcage...areas that I now question. I always thought that shoulder and elbow were from weight lifting...hmmmm. Couple of questions that Itried finding but didn't find anything concrete...

1) Can or will they radiate multiple bone leisons?

2) Is there anywhere they can't radiate...i.e. ribcage if in fact it does show up there.

3) Does immunotheraphy work on bone mets?

I need to start getting some more W's in the win column here. The waiting and anxiety is overwhelming. Like all of us, I have a lot to fight for so I'll answer the bell. Appreciate everyone's love & support here.

Josh

Let's work for better treatments....for a cure!!!!

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Jewel's picture
Replies 7
Last reply 7/21/2016 - 11:56pm

Hi there,

   My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

Jewel

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Rita and Charles's picture
Replies 7
Last reply 7/24/2016 - 9:32am

After 9 months on Braf Combo, my husband was suffering still with such nausea and joint pain that he stopped.  He was 2 1/2 months without meds and we feared the worst PET Scan results.  The oncologists were as surprised as we were relieved - no progression, still stable!  The only thing that happened within the 2 months off is that he developed vitilligo..........but the good results are what we really loved.

The Combo worked!  We don't have scans scheduled now until October :)  Vacation from worry worry worry and fear......for now!

Rita

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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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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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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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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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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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