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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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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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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Lee Parlier's picture
Replies 13
Last reply 7/19/2016 - 6:11am

I am trying to learn as much as possible from the experiences of others when choosing treatment options when you are stage 3 or 4. My personal experience has been that Dr.s shy away from yervoy and recommend interferon. There is an emphasis with the toxicity and the side effects of yervoy. 

I am not sure if I am over simplifying things but I don't understand why the potential side effects are a reason to stear a patient from the treatment if it is in fact the best option to become NED or at least increase OSR. I know immunotherapy isn't a guarantee to beat melanoma but it sures seems like a better option than interferon. 

My Dr.s options given to me:

1) DO NOTHING AND BE STAGE 4 IN 12 MONTHS.

2) INTERFERON AND BE SICK FOR AS LONG AS YOU TAKE IT BUT THERE ARE NO STUDIES TO SUPPORT IT REALLY HELPS.

3) YERVOY 3 OR 10 MG WOULD GIVE ME A 50-50 CHANCE AT BEING NED.

 

I chose Yervoy 10 mg and he tried for a week to get me to change my mind. I have currently finished 3 doses with minimal side effects yet. I know they may kick my butt soon but very happy I gave yervoy a chance. I don't know what tomorrow holds but I want what I feel gives me the best chances NOT what the Dr. feels is the traditional treatment because noone dies from it. 

I am curious for the input of people that have had similar experiences when choosing treatment or adjuvant therapies. 

Lee Parlier

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Kare83's picture
Replies 1
Last reply 7/18/2016 - 6:00am
Replies by: Anonymous

I have a commin mole (dome shaped) on my forehead. It's been there since I was little. Over the years it has grown a little. I have bumped it in the past, brushed it, accidentally hit it etc and it has never been a problem, however in the past week it has bled a handful of times, all without bumping or touching it.

I had a stage 1 melanoma removed from my back last year. I will make a appointment and hopefully see my Dr this week, just wondering if anyone has had a common mole bleed for no apparent reason?

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mrsaxde's picture
Replies 1
Last reply 7/18/2016 - 3:54pm
Replies by: Mat

Hi Everyone!

I haven't had much time to read or post here lately. I hope things are going well for all of you.

I just had my 17th (I think) infusion of Keytruda yesterday. My last scan in April was good...spots on my back are stable, with one being slightly larger (9mm vs 7mm in January), but my oncologist thinks that may be due to a different radiologist reading this scan. She says visibly they don't appear to be any different to her. As of that scan the spots in my lung continue to slowly decrease in size, and nothing new has appeared. My doctor was happy enough with my results that she decided to postpone my next scan for a month, so I'll get it done in August now instead of this month.

One thing that has concerned me a bit lately....my eosinophil count seems to be returning to normal. I've read and been told a fair amount about high eosinophils being a marker for response to immunotherapy, so the fact that my EOS Absolute level is now within normal values after being elevated the entire time I've been receiving Keytruda is a bit concerning. I'm worried that my response may be coming to an end. (My EOS Auto level is stil high, though.) I've also been much less itchy in recent weeks, and my oncologist has told me in the past that "itchy is good."

So I'm curious about a couple of things.

1) Has anyone else had a similar experience? That is, had elevated eosinophils that returned to normal during treatment. If so, what did that mean for your response?

2) If you got an initial response to Keytruda, but then later stopped responding, what treatment did your oncologist move you to next?

Thanks, and all my love to all of you.

-Bill

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sallyandree's picture
Replies 2
Last reply 7/18/2016 - 5:12pm
Replies by: AshleyS, Polymath

Has anyone taking Opdivo and Yervoy experienced a tumor getting larger and later decreasing in size?  Specifically, has anyone had a PET scan after taking several months of Opdivo and Yervoy treatments indicating that the tumor increased in size, and thereafter had scans indicating that the tumor had decreased in size?

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gigembritt's picture
Replies 3
Last reply 7/16/2016 - 12:27pm
Replies by: Janner, Anonymous, gigembritt

Well I had my first apt at MD Anderson. Dr. Ross did a punch biopsy where my shave initally was.  We have surgery scheduled on the 27th.

Depending on this path report determins if we go ahead with the SLNB and WLE or just the WLE... right now we have both scheduled..... but he said we may be able to get away with not doing the SLNB....just sucks since we cant tell depth with the stupid shave biopsy. Eased me nerves a little since he seemed to not be too worried... but now I have 4 stitches were the punch biopsy was taken......and more waiting. 

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Scooby123's picture
Replies 25
Last reply 7/18/2016 - 9:23am

Hi guys, went for my scans results treatnent to brain worked tumour shrunk. Tumour to liver lungs no change stable so no treatment needed. 3 month breather till next scans. My heart was jumping out of my chest in the waiting room. So glad got another 3 months to chill.

Scooby123

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Aaron's picture
Replies 6
Last reply 7/18/2016 - 8:30pm

So I am going for my 3rd ipi/nivo combo infusion next week and so far I have experienced two days of rash and 1 day of diarrhea.  Starting to get a little nervous that I may not be a responder since my side effects have been so minimal. I am still experiencing lower back pain like the onset of sciatica.  I have also experienced some anxiety moments. I guess that is what they are. I feel like my blood pressure is through the roof but when I check it it is fine.  Have experienced some pressure/fluttering sensations in lower abdomen where I imagine my tumors to be located but theses feeling have also pretty much subsided.  I know it is possible to not experience side effects and still be getting the desired response but it is a little unnerving because you feel you need to experience something to make you think it is working or that you have earned it. Don't know what kind of response I want. Just putting it out there. 

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youngann's picture
Replies 6
Last reply 7/15/2016 - 11:36am
Replies by: jenny22, Anonymous, youngann, Polymath

I saw Dr. Mastrangelo at Jefferson today for my initial oncology consult. His bottom-line recommendation is that I enroll in a Polynoma Vaccine trial. However, the only thing he knew about it was that there were 3 arms - 2 arms receive the vaccine and one arm recieves a placebo. He said Polynoma has been used in treating melanoma for about 20 years but he said there was 'no credible data' on it.

I'm not sure how he can recommend something that has 'no credible data' on it but he offered to have "someone who knew more about it" call me.

 

Does anyone know anything about this?

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Aubreesmommy41's picture
Replies 10
Last reply 7/15/2016 - 11:06am
Replies by: Aubreesmommy41, geriakt, Anonymous

So I got a copy of my path report in the mail today from March 30th of this year.. I had a mole removed from my upper arm and was told by the girl who assisted my rude non communicative Doctor that it was a stage zero meaning in situ.. The rude Doctor then sent me for a pet scan on April 30 because I had the nerve to keep asking questions.. Anxiety and all that.. Pet was clear.. I've had 3 more WLEs since for dysplastic nevi and apparently I'm done until November.. Seeing this report tho has me worried again.. I won't type the whole thing but Breslow thickness .40 mm.. Mitosis less that 1 per mm squared.. Regression present.. Ulceration not identified.. Can someone help me put this new info in perspective? I'm 41 and have a 5 month old baby to worry about.. Thank you

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I started a new post earlier this week titled "Obdivo and Yervoy Regimen."  My significant other is at the end of the regimen of Opdivo and Yervoy (it has been 3 months of both of those, every 3 weeks), and they are starting him with a new regimen of 5 treatments of just Opdivo.  We met yesterday with the oncologist to get the PET scan results.  Unfortunately, the tumor in his stomach has grown.  The oncologist will be meeting with the cancer board of the hospital and will get back tu us.  We are not sure if the tumor can be operated on since it is now so large.  The doctor was very surprised since with such a large tumor, she would think that he would be in much greater pain.  We are told to hope for the best but prepare for the worst..  Has anyone dealt with melanoma that moved from the original location to the stomach?  My S.O. was first diagnosed with melanoma about 6 years ago (on his back) and they biopsied and cut a margin and removed it, with a couple of lymph nodes, and 5 years thereafter, said everything looked good.  Then earlier this year, we were informed that the cancer had moved from the back to his stomach.

 

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KAF's picture
Replies 6
Last reply 7/16/2016 - 6:24pm
Replies by: KAF, Maria C, Kim K, geriakt

Hi all

Im very new here.  I was diagnosed with stage IV melanoma at the end of May.  It originated on my labia (I've had mole checks for years since the 90's but never had been checked there).  I'm scheduled for my 3rd dose of the Opdivo/Yervoy combo on Tuesday.  Had only a rash and fatigue after the first dose and have felt amazing after the 2nd dose (could be because after being hypothyroid my whole life I'm now hyperthyroid and the amount of energy I have is crazy).  Anyway, the one problem I'm having is that after having the tumor removed it's starting to reappear and now I have black dots all over both sides of my labia. My doc said that if I'm really uncomfortable that she could start me on zelvoraf next week.  She's concerned though about the side affects with all these drugs in my system. Has anyone else done zelboraf on top of the opdivo/yervoy?  If it's just the spreading I'm seeing should I just let it spread until my next scans?

Thanks. Karen

 

 

 

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Ajwells's picture
Replies 4
Last reply 7/13/2016 - 5:10pm

My brain MRI was about 4 weeks ago. I just got the results in writing and reading through them I noticed something interesting. 

First, of course, it states that there is no evidence of metastatic disease. 

Under that it states that there is a 4mm left parietal calvarial nodule adjacent to the lambdoid suture most suggestive of a post sutural epermoid though setting follow up of stability may be warranted.

I'm guessing this is from the insicion on my scalp from the melanoma removal?   

My surgeon didn't tell me about this, so I'm guessing she didn't feel it was a problem. But should I ask about it to get more information?  I don't think I will be getting another MRI for quite a while since I haven't even started immunotherapy yet. I meet with the medical oncologist tomorrow. Maybe I'll ask her. Just my anxiety hanging out over here. 

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

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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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