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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DZnDef's picture
Replies 1
Last reply 3/18/2019 - 8:19pm
Replies by: Julie in SoCal

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 3
Last reply 3/18/2019 - 4:14pm
Replies by: sing123, Lucygoose, SOLE

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 9
Last reply 3/18/2019 - 8:19pm

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 2
Last reply 3/17/2019 - 6:26pm
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 5
Last reply 3/15/2019 - 5:44pm
Replies by: Anonymous, ed williams, Bubbles, Sus69Riez

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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melanomamafia's picture
Replies 4
Last reply 3/15/2019 - 11:51am

Hello!

New to this world but here's my background. 

 

August 2018 diagnosed with stage 1 melanoma in upper right arm. WLE was successful and was supposed to have skin and lymph node checks every 3 months for an indeterminate amount of time. I didn't go in December as I should have and they called me last week to remind me. So, I'm going. Biggest fear is having a doctor all up in my 'business' ( I know, I roll my eyes at myself) 

 

Issue: I have a mark on my hand that is right next to an 'age spot' that had developed over the summer. This mark is slightly raised with a bit of a seborrheic keratosis or wart-like appearance. What's concerning is that it is pink, as my melanoma was too, and it is changing. Most of my 'new' marks since diagnosis have almost appeared overnight and not really changes any. This one is different. 

 

Has anyone had melanoma on their hand, the top not the palm, and/or pink melanoma like this?

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/14/2019 - 12:49pm
Replies by: AN8, Jamie1960, Socks

Hello all,

 

I’m hoping someone can help me de-code and understand this pathology report I received regarding my biopsy on 3/5/19. I’m going back in on 3/19/19 for full recision of the mole that was biopsied. Here’s the report:

 

“Microscopic Description:

Submitted is one slide of shave biopsy material. The lesion submitted contains skin with a pigmented cellular tumor with junction and intradermal elements. Junction melanocytes are in nests and singly and interconnect along rete ridges and demonstrate focally severe cytologic atypia. Larger type A upper dermal nevus cells are seen with maturation to smaller cells. The areas of greater atypia are seen focally scattered through the lesion.

Microscopic Diagnosis:
(Compound Nevus) associated architectural disorder and focally severe cytologic atypia

COMMENT: This nevus exhibits an architectural disorder (formerly called dysplastic nevus) with focally severe cytologic atypia, one of several histologic counterparts of a clinically atypical nevus. Diagnostic invasive melanoma or pagetoid pre-cancerous precursor is not seen in the present material. Familial Atypical Mole-Melanoma Syndrome cannot be excluded without clinical or familial correlation. Due to the severity of the cytologic atypia at the edge of the biopsy, it is recommended that conservative recision be done.”

 

For reference, I have no history of melanoma in my family, although my mother (60 years old) has had about 5 pre-cancerous lesions removed over her lifetime. I am a 23 year old male, fair skin/blue eyes, history of many sunburns across the body with a moderate amount of moles on my body.

 

Any help in understanding this report is much appreciated, thank you in advance!

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SOLE's picture
Replies 13
Last reply 3/17/2019 - 1:43pm

With everything you have been through, melanoma super advocate and survivor and «colon» cancer (forgive me, I forget exactly) survivor... How are you?

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SOLE's picture
Replies 12
Last reply 3/16/2019 - 2:04am

I am far from bragging about anything. This disease really makes you learn a lot about humility and fragility. I simply want to testify, maybe give some hope, leave a small mark in this community, on this forum.

For everyone in the storm of advanced melanoma, my humble prayers go to you and your families and loved ones. 

After 2.5 years, with a diagnosis of acral amenalotic deep ulcerated nodular melanoma under the right forefoot where the sun never shines, I appear to still be NED. I was originally staged 3b with «rare isolated cells in one lymph node» and later found to be stage 2b, maybe (probably) 2c because the initial tumour was resected at the base, giving a Breslow reading of «at least» 2.85mm. I only received surgery because i do not qualify for clinical trials and I live in Canada where, in 2016, there was no adjuvant possible except interferon which I declined. Thankfully, at the time of this writing, I have recently learned that adjuvant Opdivo is given to stage 3 patient after surgery and since the provinces have not yet agreed to reimburse the costs, BMS is gratiously giving it to patients since it has demonstrated its efficacy in preventing recurrences. Lives will be saved in Canada too.

I am humbled and somehow grateful despite the tsunami I have experienced so far that has completely devasted my whole life. I still fail to see and understand the logic and nature of this disease. I have learned a great deal about it. Too much for comfort. Nonetheless, I am still here.

So let my few words be there to hopefully comfort someone someday who is going through a similar thing. As for me, I am cautiously more optimistic, despite all the difficult stories we read about, 5, 10, 15 years out of diagnosis. Let us rely on sound science, gut microbiome, adjuvant immunotherapies and all the love in the world coming from your loved ones.

Sincerely,

Marc

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cjm22's picture
Replies 6
Last reply 3/14/2019 - 9:35pm
Replies by: cjm22, Edwin, GeoTony, marta010

Husband was on track to receive 6th pembro + 3rd low-dose ipi infusion this week, but his blood work and symptoms say "Stop!" All his "blood counts" (?) are low -- hemoglobin, white blood cells, some other measurements. Doc says she hasn't seen this as a side effect of immunotherapy before -- anemia alone, yes, but not everything blood-related down like this.

I have noticed his fatigue has been off the charts the last two weeks. He actually seemed relatively fine three weeks ago, but then took a nosedive two weeks ago -- now he gets too tired to empty the dishwasher and has to lie down halfway through. He lies down all day except when I wake him to eat twice a day (he refuses breakfast -- too tired and nauseous in the morning). No pain anywhere at all, mild shortness of breath on very mild exertion, erratic and sometimes very high heartrate. Blood pressure and oxygen saturation all seem great when they checked at the doctor.

So immunotherapy is cancelled this week. He is going to get a bone marrow biopsy on Friday to see if this is due to disease progression in his bones. He's also going to get a blood transfusion to help with his low hemoglobin and symptoms of fatigue and shortness of breath.

I'm not really sure what to expect from this. I did some searching on the forums and on Google but didn't find many results for this reaction. 

Anybody have any experience? Research? Advice? Think this is still a chance it's just the immunotherapy kicking in, and not wildfire cancer again?

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