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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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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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 3
Last reply 3/18/2019 - 7:39pm
Replies by: 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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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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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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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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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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RichInLife2's picture
Replies 3
Last reply 3/17/2019 - 2:33pm
Replies by: lkb, GeoTony, Bubbles

Interesting article in Smithsonian Magazine:

How the Microbiome Could Be the Key to New Cancer Treatments

https://www.smithsonianmag.com/science-nature/how-microbiome-could-be-key-new-cancer-treatments-180971589/

It talks about some of the latest research around the gut biome and how having diverse gut flora can lead to better outcomes for cancer patients.

There’s a link to a TEDx talk on the subject, but also there’s a link to participate in the research by contributing a fecal sample. They’re offering a $50 Visa card and a T-shirt for study participants, but I would have given them my poop for free. Here’s the link for the study:

https://persephonebiome.com/poop-for-the-cure/

 

 

 

 

Stage IV since 7/2018.

A Couple's Journey with Melanoma: https://www.tothemoonandback.net/

Our Facebook page: https://www.facebook.com/ourmelanomajourney/

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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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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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HollyC's picture
Replies 11
Last reply 3/17/2019 - 1:04am

Hi!

I’m newly diagnosed Stage 3a. My melanoma specialist suggested “wait and see” with scans every 3-4 months. While my oncology surgeon said he would start immunotherapy if I were his sister or wife. 

I’ve been doing a lot of research and talking to several other melanoma patients and I feel that I should move forward with immunotherapy. However...since this is considered preventative as currently I am NED, however no one knows if there are still cancer cells floating around waiting to attack me again. But here’s my question....I know the standard course of treatment for Opdivo is typically 1 year...12 or 24 doses. However, I’m wondering how quickly does the treatment start doing it’s job?   Maybe I don’t really need an entire year of it?  Makes me wonder if a few months of treatment would be enough to make a difference and potentially kill any remaining cancer cells that might be there.  And then of course continue with regular scans.   I would think some is better than none.  I guess my thoughts are...if 12 months of Opdivo is the treatment for Stage 4 with visible tumors then is it “too much” for Stage 3a NED? 

i guess I’m concerned too that if I really didn’t need it now...will it be as effective when / if I should need it in the future.

I appreciate any and all comments! 

Thank you!! 

 

 

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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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skfitz's picture
Replies 7
Last reply 3/16/2019 - 2:49am

Just wanted to give an update on my husband Jason. He's been on targeted therapy now since July 2018 and is still having success. His scan last week showed only 1 tumor remaining in his leg! Amazing! So he's scheduled for radiation on the one stubborn tumor and then will hopefully be given NED status for a while.

A quick recap for those of you who are suffering and scared like I'be been: He was stage 4 in March 2018 and it was everywhere: brain, bone, heart, lungs, and skin. He failed immunotherapy but had immediate success with Dabrafenib/Trametinib. We saw golf ball sized tumors shrink in days! He had cyberknife on his brain MET which seemed to shrink it quickly (though it could've been the pills too).

These pills are truly amazing when they work, though they can bring along some severe side effects. I've posted here a couple times about his relentless 103 - 104 fevers, severe rigors, and debilitating knee and ankle swelling/pain. The docs have had him on 30mg prednisone and dose-reduced the Dabrafenib (from 150mg to 75mg) which has worked until he attempts to taper the prednisone. Last month, after a horrible bout of fevers we started playing around with intermittent dosing on our own because his quality of life was really suffering. He took a 12 day break to reset his body and taper the prednisone to 20mg, then resumed the pills. He stayed on the pills for 2 weeks before breaking for 1 week and reducing to 17mg prednisone. He then increased the Dabrafenib back to 150mg and resumed the combo for 1 week, then took a 1 week break to reduce the prednisone to 15mg. It's a slow process and not all doctors would encourage it, but ours understands that quality of life matters. So far with this dosing he's had no fevers and been able to get back to working part-time. He's still suffering from joint pain and eye pressure during his "on" weeks, but loves his breaks.  

I would never suggest this approach since it got him kicked off his clinical trial, but I wanted to share our story with the community. Every BODY is different and at the end of the day, we are our own best advocates. I got this idea from reading about a current clinical trial right now that has patients taking full dose Dab/Tram on a 1 week on, 3 weeks off schedule. It's only phase 2 so again, I'm not suggesting others try this, only sharing our story.

My thoughts and prayers to everyone out there affected by melanoma and other cancers. Stay strong and keep advocating for yourself and your loved ones! 

-Shannon

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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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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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