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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Jdc's picture
Replies 0

Hi all, I finally got in to  melanoma specialist for my second opinion. unnfortunatley it was after i started 1 round of ipi, the specialist advised me that a pdl1 test should have been done as was not. He sent for the test and it was positive pdl-1 and also braf positive. he advised that i not resume ipi and start on keytruda along with radiation on another spot on lung that grew from 6 to over 9mm in 3 months. I had some pituitary swelling about 4-5 weeks after ipi infusion causing severe headaches and some vision changes.Wondering if anyone knows if keytruda will effect this also? i see the doc this friday ill update more then. Thank You all!!

Joe

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mrspink's picture
Replies 4
Last reply 8/23/2017 - 4:49pm
Replies by: Scooby123, sister of patient, jennunicorn, Anonymous

I only posted a few times but my father passed from stage iv melanoma last week. Obviously heartborken especially becuase he was only diagnosed in March but we want to hopefully make a difference with donations to help with reasearch or educational purposes. 

We'd like to suggest a donation to a melaona group in lieu of flowers. I know this page has the post on the top that I'll use if I don't have any other suggestions but wanted to check with you all on any suggestions of great groups. 

Thanks. 

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AlexBogues's picture
Replies 2
Last reply 8/23/2017 - 4:31pm
Replies by: Janner, AlexBogues

So about two weeks ago I went to a dermatologist for the first time to have a mole on my left shoulder/back checked out (http://imgur.com/a/OiTNU see image). I got the results last week and they said it was a Compound Nevus with Severy Atypia. I was very scared hearing sever and began to worry. I am scheduled to get it removed this Friday and am afraid some of the back pain and sholder pain im having on the same side as the mole is melonoma that has spread.

My question is how unreliable could a shave biopsy be to diagnose melonoma? If they called it Sever Atypia could the worse the diagnosis be "Melonoma in Situ?" Could my back pain be melonoma that has spread to my bones.

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Newmanbell's picture
Replies 1
Last reply 8/23/2017 - 4:24pm
Replies by: sister of patient

Hi all,

Earlier this week I asked for help deciphering a ct/petscan report.  There were 3 to 4 areas of concern in my husband's chest (who is stage 3b).  I spent the last two weeks sad, tears, and worried over this.  We received a call from our Oncologist and he said that the 3/4 lymph nodes enlarged are due to carbon inside them.  My husband is a finish carpenter and the dust, etc. he inhales must be contributing to these lighting up on the screen.  Sure hope he is right and that is all there is!  If that is the case, the first scan after having a wide incision from a large tumor removed and lymph nodes out 5 months ago, all is clear presently.  He was only able to do 3 out of 4 Yervoy treatments.  I believe right now we relax until next scan since unfortunately there are not many other options for Stage 3b adjuvant setting.  I'm going to try and just enjoy the next 3 months...

Our Oncologist is waiting to hear back from Steve Hodi (who we met) at Dana Faber in case he recommends something else.  Take the good news when you can, right?

Donna

 

 

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Sharon93065's picture
Replies 10
Last reply 8/23/2017 - 3:36pm

When my liver numbers went thru the roof my 4th treatment of Opdivo/Yervoy was cancelled and i was put on Prednisone.  50 per day for 5, then 40 per 5 etc.  Weaning down on dose. My AST and ALT have come down, being tested by weekly.  But i have not slept since the first night. I wake up at 1:30 to 2:30 and that's it.  I'm  up.  Sometimes i can go back to sleep at 4 or 5am for only a  hour or 2  but not always.  Too tired to get up to go to church yesterday.  I have message to my oncologist to ask 'liver' doctor what can i take maybe even 1 to 2 days a week to sleep.  I have trazapan, xanax, benadryl, melatonin.  I thought melatonin would be more natural but i read it does something with our immune system.  He told me on my last visit not take take xanax.  I've only had one since May anyways, i try not to.  All these go thru the liver so we're not supposed to take them.  I looked up  my Health Summary and it's called Drug Induced Hepatitis.  To make matters worse I am sure i have a bladder or UTI infection, so drinking lots of water etc.  I did email him to include urine test in todays liver panel.  So last night in the 3  hours sleep i did get up got up every hour to potty.  Has anyone else had insomnia from Prednisone?  I've drank hot mile with chamomile tea. I even read a teaspoon of honey tells the liver to give you sleep.  Didn't work.  I am taking a xanax at midnight tonight.  I set my alarm, I'm sure one pill won't hurt me (I hope). Or s hould it be a benadryl???   I am upset that Kaiser has me waiting a month for my new Petscan. I am calling Membership to complain tomorrow.  I am both worried and excited to see what has been going on inside of me.  The inital large bump on my back disappeared the day after the 2nd treatment (Icould feel with my hands.)  But I feel stuff going on in other places I'd like to know about.  And thank you for those that have sent me those wonderful messages about not being too upset about missing my 4th dose.  Sharon

 

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I'm not sure if I'm posting this in the correct forum. 

Regardless, here it goes. 

My 71 year old father was diagnosed with stage 4 melanoma Oct 2015. He first reported a lump in his leg a year earlier but it was missed by GP and oncologist. 

December 2015 he started Opvido infusions every 2 weeks. No side effects. 

December 2016 he had lymph nodes removed from his groin. Prior to Christmas, no more melanoma was found in his lungs. 

He continued his regular Opvido treatment. 

May 2017 treatment was stopped upon a recent CAT scan showed the melanoma had spread to abdomen, chest, neck and brain. June 2017 he started decadron. No signifcant side effects. 

July 2017 he had one radiation treatment for one side of his brain followed by 5 daily treatments to the other side. The following week he was back on his regular immunotherapy. Immediately he had an adverse reaction, fever, chills, confusion and was brought to the ER. Doctors at small hospital initially misdiagnosed with pneumonia and he started 5 continuous days of various antibiotics. No improvement. His blood oxygen levels continued to decline as low as 67. His oncologist luckily was at that hospital for clinics and saw him. He was immediately started on 3 steroids as there was no infection but he was having an serious adverse reaction. 

Since July 26 (day after last immunotherapy treatment). There has been significant changes and decline in my dad. He requires supplemental oxygen at night and most parts of the day. His mental state has sharply declined. He's very confused. Unable to finish his sentences, forgets how to get dressed, is withdrawn and appears depressed. My mom and I brought him back to the hospital regarding his mental state. 

It is a small hospital that lacks specialists and we are not getting concrete answers/explanations. Yesterday his MRI showed slight decrease in brain lesions but still some swelling. There is an infectio of some sort but not specified. The doctor says his lip sore is/was shingles (herpes virus). 

Again he could not explain the confusion.

side effects of radiation?

steroids?

as the result of the adverse reaction to immunotherapy?

His age ...is this what happens to seniors with brain mets?

We are not sure if this is short term or the beginning of his cognitive decline. 

Any similar stories? Or possible answers?

many thanks 

Vanessa 

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AvaL's picture
Replies 3
Last reply 8/23/2017 - 11:43am
Replies by: SABKLYN, Anonymous, Toby0987

Hi, hubby stage 3a and year out from diagnosis. I know melanoma is wildly unpredictable but does anyone have any research/stats about chance of recurrence the further out from diagnosis one gets. I know it reduces after 2,3,5 years etc, but anyone know from and to what (approx) for this stage? Feels like need to appreciate each small milestone, cautiously of course x

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Nemesis's picture
Replies 6
Last reply 8/23/2017 - 9:33am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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guynamedbilly's picture
Replies 1
Last reply 8/23/2017 - 9:27am

I had my first Nivo injection thursday and have not had any side effects at all.  I was nervous about it, which is nothing new since my diagnosis over a month ago, and my blood pressure was up.  In the end, there was nothing to it.  On a previous post, some were curious how I got approved for Nivo at stage 3a, and I am following up.  

 

I asked my oncologist about how I was approved so quickly, and she said they have had a lot of patients approved for it over the past two weeks, and only one rejection.  She acted like a lot of it depended on the insurance claim agent they tallked to, so maybe Bluecross is just especially good in this regard.  Either way I'm very happy and feel lucky to be near to Vanderbilt.  

 

If there is anyone needing this option, maybe now is a good time to get your doctor really trying to get it through insurance.  Good Luck

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Dhva's picture
Replies 4
Last reply 8/23/2017 - 7:59am
Replies by: Dhva, jennunicorn, AZSoCal

PET scan is positive -4x3x4 cm mass in arm.( about 9 inches from where the primary was located)  MRI also indicates an 8mm soft tissue nodule in the left suboccipital lobe.  No communication from the dr except to email an appointment with the surgeon.  Wondering, based on your experiences,  what is next besides surgery. By the way- found out about the test results on the patient portal.

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Anonymous's picture
Replies 7
Last reply 8/22/2017 - 11:33pm

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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Ridingaroundwith27Jennifers's picture
Replies 5
Last reply 8/22/2017 - 7:41pm

Hi All,

I keep learning new things.  I've learned the worst place to have an IV when getting contrast for your CT is the wrist.  I've had 5 CT scans prevously and it has never hurt.  I almost jumped out of the machine but no more complaining.  The scan looked good.  Tumors are still shrinking.  For some reason I thought there were only two left but it turns out it is three left.  Not bad considering I started out with over twenty.  This time around the oncologist mentioned that it could be scar not tumor.  I didn't realize that it was possible to end up with scar tissue where tumor initially was.  So we continue with nivolumab and wait for the MRI next month.  If that looks OK then we will make a plan. 

The other good news is that my hair is growing back after the brain surgery and radiation.  It's almost an inch long and doesn't blend well with the rest of my hair.  The style is a little bizzare.  I actually went out to lunch on Friday without a hat.  I should just go get a new style but I'm afraid to get my hair styled because of the surgical site.  I know it's silly but I haven't wanted anyone near my head since the surgery.

Augut 29th, 2016 is the day I had my first CT scan and started this journey.  As the one year mark gets closer I find myself looking back on the journey.  The short version is that I fought with my primary care's help to get a biopsy.  [My dermatologist of 10 years failed me.]  CT scan at the ER; biopsy; stroke; 4 day hospital stay; Ipi/Nivo combo infusion 1; Ipi/Nivo combo infusion 2; extreme fevers, chills, nausea; 5 day hospital stay in the MICU with IV antibiotics and blood cultures to rule out infections; 1 day home with extreme nausea; IV steriods with another 5 day hospical stay.  2 months on high doses of prednisone and then cellcept;  2 months of watch and wait;  brain tumor;  brain surgery resulting in loss of feeling in right lef and foot; tumor regrowth at 10 days post op; targeted radiation and nivolumab.  Seizure.  Seizure meds.  6 months no driving.  Did this really all happen to me?  Has it really been an enitre year?

Who am I now?  What's my new normal?   Three forever meds.  I'm a pill person now.  Pills so I don't have a seizure, pills for my thyroid, pills so I can sleep.  Injectable blood thinners.  Pills to control the itching.  I've got 3 more months on the driving ban.  My right foot is still numb.  

Apologies for the mega post.  I'm sure many of you have been through so much more than I could ever imagine.  You've come through the fire so I know I can too.  Best to you all and thank you for being there.

Cheers!

Jennifer

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Nicklindner's picture
Replies 3
Last reply 8/22/2017 - 7:23pm

Good Morning,

I started immunotherapy back in December and the first few times I ate my favorite food(sushi) i ended up vomiting shortly after.  I just chalked that up to the drugs and not the sushi as I had thrown up other times as well.  I had been feeling relatively well, as it related to naseau, for a few months and 2 weeks ago tried eating sushi again. Within 2 hours I was hugging the toilet and the experience was different and more painful then before.  I still have not recovered fully - the naseau has remained and my appetite has suffered.

 

Has anyone else found that once enjoyable foods now have negative side effects? have you found any solutions? 

Thanks everyone,

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Anonymous's picture
Anonymous
Replies 0

 

As far as I understand, the approved treatments for bone mets (excluding systemic therapies like BRAFi and PD1) are as follows:

1. X-ray Beam Therapy

2. Denosumab/bisphsphates

3. Surgical removal

Are there any other treatments for bone mets and melanoma or treatment strategies beyond this that specifically treat bone mets? Are there any centers that focus on bone met treatments? Is SRS an option once XRT has been tried? Any non-pharmaceutical approaches backed by scientific studies? Perhaps I'm grasping at straws here. 

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Dave63's picture
Replies 9
Last reply 8/22/2017 - 4:41pm

I was recently diagnosed with malignant melanoma stage T1. I explained to my family about diagnosis and that I had cancer on my shoulder. Their response "it's only skin cancer, it's not that bad". I guess I don't know how to take that. I understand there are other cancers that are more severe, maybe I just shouldn't mention it to anyone. I've never had anything like this before and I was just looking for support. Has anyone else had this reaction from family?

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