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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SBailey's picture
Replies 14
Last reply 5/10/2019 - 8:35pm

Hi All -

I've been following the board for some time, but finally got up the nerve to jump in.  My husband has Stage IV melanoma.  It was Stage IIIc last summer and he chose not to have complete lymph node dissection nor radiation therapy and began Opdivo in Nov.  His most recent PET revealed the melanom has spread (hence the new stage) and the first change is to go to the nivo/ipi combo that I've been reading about here.

The issue is that he is very open to alternative medicine and is pretty convinced that other options out there are effective without side effects (therapeutic cannabis, ozone therapy, etc).  It took our adult child to break down in tears to get him to agree to the Nivo.  

He has agreed to the combo, but they are also wanting to do surgery once the tumors have shrunk after the ipi/nivo treatments, followed by radiation therapy.  I still hear him speak with his siblings about how the cancer spread after he went off the high-dose intravenous vitamin C (started just before and concurrent with the start of Nivo) and there are cancer "spas" outside the country that have success.  

I am much less open to alternative options especially as this is progressing, even with treatment.  I am scared he won't want to treat this just as aggressively as it is going after him.  This is adding a lot of stress to what is already a stressful situation.

Has anyone dealt with this?  I want to be supportive and respected his choice last summer to not have additional surgery or radiation, but now the stakes are higher (imho).  If surgery and radiation are still recommended at the end of the combo, I think he'll have to go for it, but if he doesn't want to...I can't force him.  

Thank you all for listening and any advice you may have.  I admire the courage of everyone dealing with this nasty disease.  You've given me a lot of hope with your stories!

 

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unicornsnow's picture
Replies 4
Last reply 4/19/2019 - 12:23pm

I'm only a few weeks into my melanoma diagnosis, and I've seen a few articles around the web about going gluten free and it helping.  Does anyone have any experience with this?  What are some good gluten free recipes?  

On a side note, I've lost 11 pounds in the last few weeks by cutting out gluten, so at least there's that.  

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Raco's picture
Replies 12
Last reply 5/3/2019 - 9:45am

SORRY FIRST ONE POSTED AS ANONYMOUS

WHOOOOOP WHOOOOP LAST Treatment  3/21/2019.  NOW CONSIDERED N.E.D
I also have been back to my Dr. April 4th for blood work and to see him for further instructions.
He said he was pleased with my treatments and all my scans which were normal.
My biggest complaints have been PAIN, LOOSING All MY HAIR and ITCHING.
I am on Prednisone 10mg a day for now and will start decreasing over the net few week and see if any pain comes back. Keep Fingers Crossed.    ( anyone else had symptions last past final treatment?)
    
What a journey kinda strange not going to treatment every other Thursday but Im sure Ill get over it.
Wishing all my hair will return lol. 
My wish and hope that we all can get to the place where we are NED.
Raco

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/22/2019 - 12:04pm
Replies by: Raco, Hukill, mandyjill

WHOOOOOP WHOOOOP LAST Treatment  3/21/2019.  NOW CONSIDERED N.E.D

I also have been back to my Dr. April 4th for blood work and to see him for further instructions.
He said he was pleased with my treatments and all my scans which were normal.
My biggest complaints have been PAIN, LOOSING All MY HAIR and ITCHING.
I am on Prednisone 10mg a day for now and will start decreasing over the net few week and see if any pain comes back. Keep Fingers Crossed.    ( anyone else had symptions last past final treatment?)

      
What a journey kinda strange not going to treatment every other Thursday but Im sure Ill get over it.

Wishing all my hair will return lol.   

My wish and hope that we all can get to the place where we are NED.
Raco

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Golfnut2609's picture
Replies 4
Last reply 4/18/2019 - 6:23pm
Replies by: MMH, melanomamafia, Bubbles

Hey guys and girls looking for some input on an issue i have.  I have a dermatologist appointment next month but my mind is racing

I am 38 yeard old going on 39.  I lived in the sun growing up playing golf as you can see by my title.  When i was 34 years old i noticed a solitary pink/shiny bump on my right  thigh.  I went to several dermatologists until one finally removed it.   When they did I was called in and told this was a very rare mole called a spitz nevus.  It was diagnosed as an atypical spitz because of my age but the margins were clear. 

After googling atypical spitz i became petrified that this may have been melanoma but they missed it.   I actually contacted the dermtatopathologist and he explained to me that what he saw was a spitz nevus but because of my age it had to be categorized as atypical.  He explained to me that he sees them in adults frequently and that the science on these moles is still evolving. 

Just recently i noticed a pink/shiny bump on my left calf.  It is about as round as a pencil eraser.   It actually is in a spot where i used to have a patch of eczema.

I am not noticing this bump growing.  My question is do melanoma's blanch ?  When i push on this bump it turns dark red and quickly fades back to light pink.   

Also could this be related to my original spitz ?  

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desmelwife's picture
Replies 13
Last reply 4/23/2019 - 9:09pm

Hello!

I’ve been absent for quite a while as I have been dealing with some serious problems with my husband. 

He started once a month Opdivo infusions in January. In February he started having severe insomnia for about 2 weeks. After that he became depressed and anxious. This became so bad that he had to take a leave of absence from work. He is self employed and has been off for almost 2 months now. We are close to depleting our savings and I will soon have to look at selling our house. 

His condition is definitely getting worse. He is constantly anxious and very paranoid. 

He has been seeing a psychiatrist and has been on an antidepressant and anti anxiety for about 6 weeks with no change in his condition. 

Recently my husband had his 4th infusion and the week after I have noticed an increase in his anxiety and depression. It was then that I started researching if this could be a side effect of the Opdivo. I have found several articles about serious mental health side effects  with interferon but nothing specific with Opdivo. However, depression is listed as a less frequent side effect. My husband is very sensitive to medication so I wonder if this could be a side effect?

Has anyone heard of side effects like this with Opdivo? I am desperate to get him better!!

Husband diagnosed with Desmoplastic Melanoma 10/18. Started Opdivo at Moffitt clinic 1/19.

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Hnevin77's picture
Replies 1
Last reply 4/15/2019 - 7:25am
Replies by: Edwin

I am a 42 year old Caucasian woman with no history of melanoma in the family. I noticed a dark streak on my big toenail back in January. It has gotten darker and bigger since then and is brown, beige and black. Originally i felt nothing, but recently I’ve started having some pain. I don’t have health insurance so I haven’t been able to get it checked and I am very worried. It is not a bruise, I have not injured it. I only noticed it when I removed nail polish. I just joined this forum and am trying to figure out how to post pics. Any opinions or advice would be very helpful 

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jennunicorn's picture
Replies 4
Last reply 4/15/2019 - 10:22am

Happy Spring everyone!

I wanted to give a little update from my last post about joint pain medication. As a review: all regular athritis medication has failed me and the next recommended step was to try methotrexate. Methotrexate being an immune suppresing drug, I was scared. I thought long and hard about it and decided I would at least try one natural way of getting relief before jumping on the more "hardcore" medication train.

So, I cut gluten out of my diet. I had done this experiement for my eczema many years ago, and it worked to help control flare ups of that. I thought, well, why not try it for joint pain/inflammation. Along with cutting out gluten I added more anti-inflammatory foods to my diet and generally just started to eat healthier. I haven't taken any anti-inflammatory medication or any pain relievers at all.

It's been 2 months and for the first time in close to 10 years I am pain free! I am shocked. I am not one of those types of people who jump on the natural remedy bandwagon every time I see some random Facebook post about "try this smoothie for this ailment!" type deal. I work with medical professionals, I take the scientific method seriously. So, I wasn't expecting a whole lot from this "experiment" of mine, but I knew it wouldn't hurt to try.

I wanted to share this in case it helps anyone else who might be dealing with this not so fun side effect of treatment. Obviously it's not for everyone and maybe at some point this will stop helping and I'll have to think about medication again. For now, I will daydream of gluten rich pizza while eating my salads.

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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Carlsbad317's picture
Replies 5
Last reply 4/15/2019 - 11:17pm
Replies by: Carlsbad317, Anonymous, Edwin

First treatment of the combo was 6 weeks ago. Five days after relentless diarrhea took over. Steadily increased steroids up to 80, am due out everything on pause. Now Some days none other days, greater than 5 times. Can’t seem to drop below 40 on the steroids or the relentless returns.  Doing an IV tomorrow of meds to prevent the diarrhea - praying it works.  Any experience with this? 

Hanlon

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Riven's picture
Replies 12
Last reply 4/20/2019 - 12:33pm
Replies by: lkb, Riven, Dwarla, Linny, cjm22

Hello friends. On April 2nd I had a hysterectomy and so I am on narcotics. As some of you may know, these tend to constipate people. I am using stool softeners, gas ex, and if needed laxatives. My mother, who tends to try and live holistically, really wants me to start taking magnesium. Usually I am all for trying natural stuff first, but my oncologist basically told me to not use any dietary supplements with out talking to him or doing extensive research, because they can counter act the Opdivo.

My question is, has anyone else been on Opdivo and been given the green light by their oncologist to use magnesium? Dr. Richart is on vacation and won't return until after Easter, and I can't find any returns when searching about this.

Thanks in advance.
Becca

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/29/2019 - 12:08pm
Replies by: cjm22, GeoTony, marta010

Things are looking up right now! My hubby's pain is almost totally gone -- he doesn't take any opioids any more, just the occasional naproxen for when the tingling in his left leg gets too bad. He started physiotherapy this week to see if he can regain some of the muscle and flexibility he's lost over the past 9 months of not being able to walk much. He even signed up for a coding workshop in a couple weeks since he's thinking about what he might want to do for work someday!

So that's all awesome!!

Less good: he has had two episodes of scary confusion. The first one he behaved very strangely for about 20 minutes before snapping out of it (couldn't figure out how to put on clothes or understand what I was saying, etc.). The second one he was unable to speak for about 20 minutes -- he just kept saying gibberish and word salad instead of actual coherent sentences. The second time we went to the ER, they did blood work and a CT scan of his brain, and they said everything looked the same (he still has a couple brain mets but they're small and stable right now).

Neurology referral to figure that one out!

But other than that all is good <3 Hope all of you are doing well too!

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Happygal's picture
Replies 8
Last reply 4/23/2019 - 9:03am

The CT showed a small amount of progress , the nodules on my lungs are slightly diminished, the liver is basically the same as the last CT (which is really fantastic news as my Dr was expecting it to have progressed quite a bit.) There are 2 small new nodules on the liver, but that is all.
My liver is still trying to come back from Hepatitis due to the Ipi/Nivo combo and I will be on Prednisone for a few months to calm it and get it in better health. The good news about that, is it did kickstart everything and is doing its job.
Future treatment at this point is to wait a few months, then take the last Ipi/Nivo combo infusion and that will be that.  We will watch and see what my body does with it.  The good thing on this is I won’t have to take the single Nivo infusion every 2 weeks, as it is what i was on when it metastasized to liver and lungs.
I am hopeful as this is the first positive news I have had since it all started and I feel pretty good not being on all the medications….

I do have the wonder on what if it doesn't work, but... I will take this small victory right now and feel some relief for a bit.

 

Tyais

Tyais

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Last week to register.  www.safefromthesun.org

 

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Mohnishagrwl's picture
Replies 1
Last reply 4/12/2019 - 11:21am
Replies by: ed williams

Hello

finger melanoma initially diagnosed in 2015 stage 1 finger tip imputed and one year it was all good till I found multiple tumor in chest and abdomen. Getting treated with Keytuda 26 infusion done severe body pain like arthritis due to which last 2 infusion got postponed and Timor’s spread to brain also. Active ulcer is also diagosed what to do suggest brain RT THERAPY FOR 10 days also taken 

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AMcReader's picture
Replies 4
Last reply 4/12/2019 - 2:01am
Replies by: MarkR, ed williams

Thank you for forgiving my attempt at humor. I’m once again in need of advice from some of the veterans and google researchers around here. :)

A little bit of background...

After 8 months of single-agent Nivo (following surgery and SRS to the brain), I moved to the Ipi/Nivo combo. I tolerated 3 of the 4 treatments before landing myself in the hospital because of my AST (1700) and ALT (2300) numbers.  The good news is that at the hospital I learned that my two lung tumors were shrinking as a result of the combo and my oncologist thought we could add in radiation to hopefully move the elimination process along. So, while on steroids to try to get my liver numbers back in the normal range, I started radiation.

Radiation and, hopefully, steroids wrap up next week and the initial plan was for me to go immediately on single-agent Nivo to get the benefits of concurrent radiation/immunotherapy treatment. However, I’m hesitating because I know if my liver acts up on Nivo, I’m done with immunotherapy forever and I’m wondering if giving my liver a bit more time to recover before resuming Nivo might be a better idea. So, here are a few of my many questions...I know there is no perfect answer but am grateful to anyone who takes the time to share their experience/perspective:

- With almost a year of immunotherapy in me, prior to starting radiation, would that be considered concurrent treatment?

- What is the likelihood of a negative reaction to single-agent Nivo the second time, if I tolerated it well the first time?

- Is there good reason to “save” Nivo for later in case I need it or would it be better to just get it in my system again now?

- Is 11 months of immunotherapy treatment long enough? Should I go back on Nivo even if my scans are clear after radiation?

Not sure that it matters but I am BRAF positive so checkpoint inhibitors are still an option if I ever need them. I just like the durability of immunotherapy. 

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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