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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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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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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B_Hutz's picture
Replies 14
Last reply 7/19/2016 - 12:07am
Replies by: Beehappy, B_Hutz, MoiraM, Anonymous, Ed Williams

I am a 43-year-old male that was first diagnosed with melanoma in 2009.  I had an in situ melanoma (.7mm Breslow thickness) removed via WLE. I was followed by my dermatologist and oncologist for the last 6 years.  In June of last year, my dermatologist felt a swollen lymph node under my left arm and I had an axillary dissection in August.  1 node of 16 tested positive for metastatic melanoma and was staged at 3B.  I developed lymphedema shortly after surgery and I have been working with garments, a pump, and OT twice a week to try to keep it between stage 2 and 3.  

 

I started 10mg/kg Ipilimumab infusions in early November.  The last infusion I received was on New Year's Eve, which was my 3rd.  In early January, I was hospitalized with hypophysitis and treated via intravenous high dose steroids.  I was sent home on hydrocortisone, but was hospitalized again when the pituitary headaches returned.  I was given more high dose steroids (120mg) and have been on them trying to taper basically since January 5th.  Each time I reached the end of the taper and transitioned to hydrocortisone, I had major issues.  

 

Over the past 6 months, I have been fighting the ipi side effects and also the side effects of all the meds that they are giving me to treat the ipi side effects.  I have been diagnosed with Ipilimumab-induced hypophysitis (swollen pituitary gland), Prednisone-induced pre-diabetes, Ipilimumab-induced hepatitis, Prednisone-induced hypothyroidism, Prednisone-induced hypomania, and my former 20/20 vision is now a mess from the HD prednisone.  My endocrine system is non-functional, but I hope that it regains some function when I can finally be done with the steroids.  

 

My last MRI showed that my hypophysitis had resolved.  That is good!  My liver has been the last to cooperate.  At the end of all but my last my tapers, I have been hospitalized or placed back on high dose steroids to try to get my counts to drop to normal levels.  I finally was able to get off of the prednisone on 6/5/16.  I am now taking 20mg of hydrocortisone in the AM and 10 in the PM.  In addition I am taking Cellcept to try to keep my liver enzymes down.  

 

I have had a ton of CT’s and MRI’s over the last 6 months.  All have been checking on areas where I have had all the side effects to try to find the problems.  They have all been clear of mets. That is something to be very happy about, and I am.  I will not receive any more ipi infusions due to the toxicity that occurred.  If melanoma returns, my oncologist will look at a different treatment option.

 

My major issues right now are the edema, swelling, pain, and weight gain that no one can seem to help me with.  I went from running 5 full marathons and 6 half marathons 2 years ago, to gaining 60 lbs of swelling in 2 months.  I am eating clean and doing my best to move with difficulty, but I am not able to get the miserable swelling to decrease.  My oncologist blames everything on the prednisone.  I was just diagnosed with 3 superficial blood clots in my right leg that I am treating with Lovenox injections in my stomach twice a day for 3 months.  I was also diagnosed with Meralgia Paraesthetica that makes it tough to sleep.  

 

Has anyone out there experienced some similar side effects of ipi?  If so, I would love to hear from you.  I still believe the ipi is very active in my body, as it has shown with my liver and causing all of this swelling.  I know that side effects can continue to show up for a year after my last treatment, but this one thing after another is getting very hard to handle.

 

My thoughts and prayers are with all of you!!

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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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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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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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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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ashley_k's picture
Replies 7
Last reply 7/17/2016 - 10:00pm
Replies by: ashley_k, Anonymous, stars, MoiraM

So, strange question, does anyone recognize or celebrate the anniversary of a diagnosis or treatment?  a year ago I was diagnosed and this past year have been telling myself that reaching on year of NED is something to celebrate.

My baby is not quite a year old but is healthy.  It is something I am so very thankful for, a true blessing.  I worry since she has fair skin like me (not like the husband).  

This past year I've had 15 biopsies, one melanoma, two benign and the other 12 mildy atypical.  Every three months I go through the phase of taking and comparing photos, searching for the outliers and tracking any odd symptoms I may be experiencing.

I'm still terrifled of being in the sun for long periods, wear sunscreen and hats religously and even spent a ton of money on expensive long sleeve & swim tights with spf protection but I'm stlil afriad of being in the sun.  

Does the fear ever go away?  My mother asked me if I was ever going to have a tan again.  She asked when I would wear shorts and told me that the sun is 'safe' before 10am and after 4pm.   My husband tells me she is from a different 'generation'.

The good news is that insurance covered genetic testing.  Apparently I do not carry any of the common melanoma related gene mutations that the company was able to test for.  I am hoping that means good things for my kids and I do not have to be as concerned, right?  I think it also means melanoma was probably related to UV exposure most likely, right?  I served in the Navy and flew in airplanes and wonder if I may have been exposed to more UV/radiation? 

 

Ash

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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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