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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Scooby123's picture
Replies 16
Last reply 3/26/2019 - 5:07pm

Hi all, been to have my 3 week review and bloods today. Treatment 25 of pembro Monday. Pleased to say all clear pray to God.
Thanks guys
SCOOBY❤

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cjm22's picture
Replies 6
Last reply 3/23/2019 - 7:54pm

We met with our oncologist to talk about my husband's bone marrow biopsy results and lots of recent blood work! He has two serious but normal immunotherapy side effects and one crazy rare side effect. End result is, of course, high-dose steroids (and also beta blockers to lower his racing heart rate). But I thought I'd put down these side effects here since I hadn't seen the bone marrow failure one on MPIP when I searched. If somebody else someday faces this, hopefully they will find this post.

1. Hyperthyroidism. Believed to be causing the fatigue and racing heart. Beta blockers to lower heart rate. Also a referral to an endocrinologist. This just popped up this week in the blood work.

2. Liver inflammation/hepatitis. Being treated with high-dose prednisone over the next two weeks. Also a referral to a liver specialist.

3. Panhypoplasia/aplastic anemia (bone marrow failure). This is a really rare side effect. Only a couple case studies of 3-4 patients who've developed this. But of course my husband got it! And he was even on low-dose ipi! The hope is that the high-dose prednisone and no more immunotherapy will resolve this. But he'll be getting weekly blood work as well as transfusions if necessary. If the blood counts don't stabilize or improve, our oncologist has already made a blood specialist aware of my husband's case and they'll send my husband to the blood specialist for more treatment. This could be due to the immune system 'attacking' the bone marrow, or possibly the liver inflammation is causing it.

My husband has also recenty started to hear ringing and lose some hearing in his right ear. This preceded his original diagnosis of a 3 cm brain tumour. So he's getting another MRI next week to check on his brain (he had one about a month and a half ago).

In the meantime he has lost three pounds in a week and is very sleepy. I hope the prednisone works its magic on him and also that the MRI next week shows some benign or immunotherapy-related reason for the hearing loss, and not another growing or new tumour.

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bdginmo's picture
Replies 6
Last reply 4/4/2019 - 12:50pm

First time poster here...

My sister-in-law was diagnosed with melanoma stage 1A on the face with a depth of 0.5m in Novemeber of 2017. At that time margins were clear and she was considered to be at a very low risk of recurrence.

Fast forward to March of 2019 she woke with headaches and blurred vision and, with a series of rapid emergency room visits and appointments, she was diagnosed with metastatic melanoma of the brain and lungs. There are at least 20 lesions in the brain and 5 in the lungs.

We are all very shocked by what has just happened in the last couple of weeks. She is already consulting with the Mayo Clinic. We are waiting on the BRAF marker results. Though, based on updated information available as of this morning we think it is BRAF positive, but need confirmation from the doctor first. Follow up is scheduled for March 25th.

Any advice would be welcome. Thanks!

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anniemac's picture
Replies 13
Last reply 3/28/2019 - 5:00pm

Please help me understand. 

I have had a nodule on my leg for months.  It was removed and sent for biopsy.   The Doctor called yesterday and said it it melanoma.  After being on the internet all night I found you guys.  The doctor said it was 2.8mm and is sending me to an oncologist.  Recommends SNLB and something about cutting with wide margins.  

My question is what does 2.8mm mean.  I understand there is a scale but don't understand where the depth measurement came from.  That is - is it surface of my skin upward or downward.  I am not sure if I asked the question correctly.  Some insight would relieve anxiety.  

Thanks 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/20/2019 - 9:49am
Replies by: jrtufo, DZnDef, marta010, swalters1038, Anonymous

My husband is having pretty awful Braf/Mek side effects that include vomitting, Rigors, temp, diarrhea, lethargy accompanied by elevated liver enzymes and C reactive protein.. My question is, Is this just a matter of enduring until he can no longer tolerate and then have a break or when is the time to say well this is enough of this particular therapy? Anyone have any experiences? We know this therapy has given us a good result so far and feel we need to keep pushing through the side efects but obviously it takes its toll on the body and is exhausting for us both. I do feel for anyone going through this alone.

 

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DZnDef's picture
Replies 25
Last reply 3/21/2019 - 1:10pm

Hi all,

I hope everyone is doing their best and winning their fight against the beast.

 

I could use some advice from the wise and generous folks that frequent this site.  I have been battling the beast at stage IV for over six and a half years now.  I’ve had mets in my lungs, brain and sub q and I’m still fighting.  Currently, I have mets that are all sub q in fat.  Lungs are clear and brain is clear.  I am BRAF positive and have been a super responder to Taf/mek and now Braftovi and mektovi but I’ve developed a group of mets that are now resistant.  If I can’t conquer these resistent mets, eventually they will spread to a more dangerous location.  Any suggestions for next steps?  My onc is offering two phase I trials or one phase II trial or chemo.  Brain mets are gone (or stable, not sure if two spots are stable mets or not cancer at all).

Any suggestions or links are most welcome.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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Barbdillon1115's picture
Replies 4
Last reply 3/18/2019 - 8:25pm
Replies by: KellyH, kst, Barbdillon1115

My 35 year old son was diagnosed with stage 3c melanoma in November 2018. He has blue cross blue shield insurance and just received letter from them that they will no longer pay for his IV nivolumab immunotherapy after September of 2919. He is supposed to be on this treatment for two years, he started first treatment in January of 2019. I told him to have his oncologist write an appeal letter to insurance company. Does anyone have any advice on what steps we can take so my son can continue treatments, any help would be greatly appreciated.

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amyvallance's picture
Replies 5
Last reply 3/19/2019 - 9:29am

Hi everyone. I am new to this site. My father was diagnosed April 2018 (from an unknown source) at stage 4. He passed away January 31, 2019. He did immunotherapy from May to November and the cancer took over. It was the hardest thing to go through.... 

My husband had a suspicious mole looked at last year and it came back fine. I sent him back because it just didn't look right - it came back "invasive malignant melanoma, superficial spreading type". Ironically, he met with the surgeon last Friday- my dads birthday - and is scheduled to have it removed April 3rd.

The mole is on his left temple just behind his hairline.

The docotr made it sound like," its superficial, we will cut it out (send it to the lab of course) and you should be fine." The report says it's an anatomic level III, Breslow depth 0.34mm, radial growth phase: present.

Seeing that I'm still grieving my dad and the word melanoma just scares me- I don't know if I'm being overly sensitive, but I'm afraid it's going to keep coming back on my husband. He has so many moles on his body (he was a competitive swimmer and spent countless hours in the pool and sun growing up and I'm afraid they are going to become melanoma. How do you go about this?! 

Is the likely hood of the melanoma on his scalp going to come back in the same place? When do you advocate for yourself as the patient and ask to have moles biopsied?!

Any advice or experience????

Thanks,

Amy 

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SarahTX's picture
Replies 10
Last reply 3/19/2019 - 9:54am

Hi Folks! I just received the news that my SLNB came back positive. Wi
Waiting on PET scan, and doc says that we will start Opvido soon. I am freaking out.

For those of you who have been battling for awhile, I'm really curious about diet and supplements that seem to work for you. I just started CoQ10 yesterday (though my doc thinks I may be wasting my money, I think), Vitamin C, vitamin D and a Mediterranean diet. We're jumping in feet first with the no refined sugars bit. I'm really hopeful that we can starve this cancer, but is that all just hokey? I know there is a lot of quack science out there.

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Debbiemartis's picture
Replies 4
Last reply 4/4/2019 - 11:59am
Replies by: Debbiemartis, Bobman

Hi everyone

 

I’m reaching out to see if anyone has been diagnosed with or heard of anyone with Epidermatropic Metastatic Melanoma?

I have had many melanomas in situ plus at least 1 invasive melanoma since July 2018.  Original melanoma diagnosis was in 2015. 

My oncologist wants to try Opdivo for 12 months. I’m at City of Hope with a melanoma specialist and they have not seen a case like mine. 

I am hoping to connect with someone who has been down this road or can give any advice or insight. 

Thank you!!

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Roxanne218's picture
Replies 12
Last reply 3/18/2019 - 12:08am

I am faced with a 2nd annual PET/CT scan coming up soon. I really dread all the radiation entering my body by having this done. I know it's a valuable test, but is there any other type of test that can give me results for spreading or non-spreading of melanoma? What about CT scan alone? Ultrasound? First baseline PET/CT scan last April showed NED. Thanks for any info/advice.

Roxanne

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Lucygoose's picture
Replies 5
Last reply 3/17/2019 - 2:29pm

I went for the preclinical trial consent form signing and screening tests yesterday. It included a pre-treatment core biopsy sample of the big lymph node on my neck that started this journey (not fun).  

It also included a lot of time sitting in waiting rooms thinking.  Somewhere during all this my confidence that I made the right decision for treatment evaporated.  Should I have gone to MD Anderson instead? Even though it would have been lots of travel and stress, it is MD Anderson.  I just don’t know.  

Is this a normal part of the journey? Worrying that your making the right decisions? 

Lucy

Lucy

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jsmith279's picture
Replies 4
Last reply 3/16/2019 - 11:28pm
Replies by: jsmith279, Lucygoose, MarkR

How long is SLNB surgery usually? My husband has 1 node behind his chest wall and a few others that need to be removed. He's going to have a drain and the surgeon has moved the procedure from the outpatient facility to the actual hospital because of the 1 behind his chest wall. Does this mean an over night stay and on average how long does the procedure take?

http://www.wifesjourneywithmelanoma.blogspot.com

 

Jen

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Charlie S's picture
Replies 8
Last reply 3/18/2019 - 4:41pm

..Ken Ballard, my best friend of thirty years, died this morning after one week in hospice due to complications of melanoma.

He was by my side since 1990, three years after  I was first diagnosed as stage 3 with unknown primary.

In 1996 when he asked me to take a look at his path report, we cracked up when I said Ken this is NOT a contagious disease.

He always said to me that he was not done with melanoma.......

Now he is.

Charlie S

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/31/2019 - 9:18pm
Replies by: Sus69Riez, Anonymous, ed williams, Bubbles

So I am a bit of a worrier. I felt this small bump on my helix of my ear. Went to the dermatologist and she said we could watch it or biopsy it. It was not even like a raised spot more like a bump with no borders.

so now I have myself convinced I had a flesh colors nodule melanoma - is this at all rashional ?

bad news is test results not for 7-10 days

i may die of a heart attach waiting

 

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