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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Anonymous's picture
Replies 1
Last reply 4/22/2019 - 1:19pm
Replies by: ed williams

Covers many topics, related more to stage 3 and 4 patients, some pretty interesting facts on Pd-L1 status and tumor micro environment, hot and cold tumors and managing brain mets as well as managing IRAE's. https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=0m0s

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kb9718's picture
Replies 1
Last reply 4/22/2019 - 1:35pm
Replies by: ed williams

I was just wondering what the mitotic rate meant? Mine is 8 which seems really high and Im not to sure what to think of it. If it is something to worry about alot in the future. Hope everyone is doing well and wishing everyone all the best 

kb

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chrispl1974's picture
Replies 6
Last reply 4/22/2019 - 1:17pm

Hi,

I signed up in January after having been diagnosed with Melanoma. As you can all imagine, this came as a big surprise, but the doctors are optimistic. Me being cautious by nature, I sometimes wonder if this is a standard approach by doctors to put your mind at ease, or if I can really believe when they say " Treatments have advanced and we caught it "RELATIVELY" early"...

Thanks in advance for your advise and input. Here some data on my case:

Diagnosed in January 2019. I had a small 4-5 mm spot on my thigh for around 1.5 years but neglected it.

My dermatologist did an excision and results were:

Nodular Melanoma , Breslow depth 1.9mm , no ulceration, Mitotic rate 1, Clarl Level III

2 Weeks later they did an SLNB and WLE ,unfortunately both extracted lymph nodes had micrometastasis (the report does not show how large, but supcapsular invasion depth in one of them was 2mm in the other 0.5mm with only isolated cells).

Did MRT and CT etc. and all clear so I have been staged as IIIa   (T2a N2a).

Started in February with BRAF /MEK inhibitors (Tafinlar and Mekinist) since I am BRAF 600E positive.

Minor side effects and all good so far. 

Doctors tell me and I quote "This treatment will kill any remaining cancer cells".

I have been reading up and although the latest 4 year RFS numbers of Tafinlar - Mekinist for IIIa are impressive, please let me know what else I can do to improve the odds. I have changed my diet and also try to do some yoga. etc. 

Thanks for your help and take care


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Lucygoose's picture
Replies 4
Last reply 4/20/2019 - 8:42pm

Hi! 

I’ve had 2 rounds of ipi/VX15/2503 as neoadjuvant treatment for Stage 3B, primary unknown.  My scans are May 1 and neck dissection surgery May 6.  

My side effects are rash and fatigue. Bad fatigue - I’m getting more tests for that. Rash is responding to the steroid cream. 

The great news is the big lymph node in my neck that started this journey is noticeably smaller.   I know the scans are the definitive measurement but externally it is a dramatic difference.  

It’s a clinical trial so fingers crossed this is a good sign for all of us.  

I just couldn’t wait to share.  I’ll let you know what the scans show.  

I’m feeling hopeful!

Lucy

Lucy

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jjk17's picture
Replies 6
Last reply 4/20/2019 - 5:34pm

Hello All!!

I have been MIA for a while, but I have still been getting on and keeping up with everyone's post as much as I can! I was reaching out to get some guidance/opinions!

I am still cancer free!! Scans have been clear since December 2017. Still going to Derm and Oncologist every 3 to 4 months for scans ect. My husband and I are throwing around the idea of adding to our family...But honestly I am scared to death. We have consulted with OB and Oncologist...Both have different opinions, but think it should be fine, but of course cant say one way or another...

Real quick run down on my history: Diagnosed in September 2017 Stage IIIC, ulcerated spot on upper inner thigh. Surgery and removal of two nodes. Biopsy report showed cancer cells in one of the nodes. Started immunotherapy in January 2018, Nivo. Stopped once for high liver functions. Restarted until September 2018, stopped end of September, kidney was failing due to Nivo. No immunotherapy since then and still clean scans.

Did pregnancy bring out melanoma...??? Million dollar question everyone wants to know! So here we are...do we try and something comes up during or after pregnancy,could it be worse or dare not to risk. I want to be around for my family.....

That's where we sit....What to do...

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ErinATC's picture
Replies 9
Last reply 4/19/2019 - 4:07pm

Hey all.

The doctor proposed looking into TIL therapy in Toronto. Currently my friend is doing really well on his Braf/Mek drugs after having a partial response to IPI/NIVO. His cancer progressed in his bones after ipi/nivo while everything else shrank. Now he’s on to targeted where he’s feeling pretty good. Strong. Working out almost daily. He is stage 4, with tumors just about everywhere you can list, and they weren’t small. 

Brain tumors have completely cleared up with no surgery/radiation.

I can’t find much on TIL studies that are recent. He is 42 years old, and was in excellent health before this. 

It would mean relocating to Toronto for him, which is a big move. Can anyone tell me what timeline is on average? what about current success rates, and via what method? I see lots about high vs low dose. 

 

Any, and all info or personal experiences are appreciated.

 

Thank you in advance,

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MMH's picture
Replies 1
Last reply 4/19/2019 - 12:20am
Replies by: Anonymous

I have a new/changed mole about 4-6 inches from my original site. I had a .6mm spitzoid melanoma removed in August 2018. Today I was itchy and took a look and to my horror there is something there that looks an awful lot like my original melanoma. Pink/Brown/White and a little bit shiny. I am obviously panicked. I have contacted my dermatologist but I have not heard back and my imagination is racing. Any idea on how common recurrence near the original site is and what that means for my original 1a diagnosis? Does the spitzoid piece of the diagnosis matter?  Crushed.

MMH

MMH

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Carlsbad317's picture
Replies 7
Last reply 4/19/2019 - 3:04pm

As a novice cancer patient and absorbing as much as I can with each new appointment, lab, and side effect can anyone help me or point me to a website about LDH levels. I keep reading that is how the cancer is tracked and my last lab said 271- which is up about 100 from a month ago.

 

Thank you.

Hanlon

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jen.bren's picture
Replies 6
Last reply 4/20/2019 - 12:26pm

Well, today is the day I go in for the calf nodule to be removed. 

I can only hope and pray it is not another recurrence.

For now I will look forward to coming home and resting and finally being able to eat and drink.

Blessings to you all,

 

Jen

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MovingOn's picture
Replies 4
Last reply 4/22/2019 - 12:33pm
Replies by: casagrayson, kylez, MarkR, Hukill

I’ve read about some folks getting their entire pituitary function back after immunotherapy induced hypophysitis, yet most do not get this function back. Wanted to give an update on my anecdotal experience. My pituitary stopped sending signals for Thyroid (TSH), Testosterone, and cortisol two years ago while at my 3rd dose of 10mg/kg of yervoy. Since then my TSH has recovered to normal. It was zero for about a year and then spiked higher than normal followed by settling in to the normal range it had been prior to yervoy. Next my testosterone recovered to a level 20% below the normal value for my age, but it had been near zero when hypophysitis hit. So I’ve continued the testosterone cream and will most likely stay on this for life.

Finally Is like to mention my cortisol production. It is still at zero (unmeasurable by tests). I wish this would come back because even hydrocortisone is short acting and I need to take multiple doses throughout the day. But it does seem like this aspect of hypophysitis is permanent so far. 

 

So I guess what I’m saying is that based on my anecdotal experience anyone experiencing hypophysitis from yervoy May be able to regain thyroid function eventually, testosterone could be your own choice after initial supplementation, but cortisol may not recover and is a life threatening situation to take seriously.

2019 is a new year!

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ABlazek's picture
Replies 2
Last reply 4/18/2019 - 5:02pm
Replies by: ABlazek, mary1233

This board helped me a lot through my initial Melanoma diagnosis. I am so thankful for the all of the practical advice and wisdom that helped me see through my fears.

I hope it is okay that I ask this group for info on a topic for my mom (not Melanoma, but skin cancer related).

My mom is 75 and diagnosed with Vulvar Cancer SCC this week.  I know there have been a few with melanoma of the vulva here,so I thought I might ask here for info.  The Derm wants to do MOHS.  Can anyone here offer any insight on MOHS for Vulvar Cancer?  Any experience or idea on how effective this is, and more importantly how quickly Mom might heal from this surgery? I am very nervous about her being in a lot of pain. Also, can a SCC or any skin cancer be accurately staged using MOHS?  Her shave biopsy extended to all margins, so dept not know at this time.

If you have any suggestions for questions we can ask the doctor that would be great too.

 

I can't find a US based Vulvar Cancer forum, so I am seeking help where I most trust (this board).

 

Thanks for any insight you can provide.

Anne

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K_Todd2015's picture
Replies 3
Last reply 4/17/2019 - 6:23pm

Hi, first time posting, but have been wondering if there are others who have been through a two year cycle of Keytruda and what their post treatment progress/symptoms have been.  

I was diagnosed November 2015.  Tumor removed along with lymph nodes affected.  Stayed cancer free until February of 2017.  Melanoma came back in my right clavical/shoulder area (initial mole was on my right arm) and a lymph node in my neck on the right side and a lymph node in my neck on the left side.  Started Keytruda with minimal side effects (severe fatigue was the only thing I really struggled with).   At the end of my two year cycle still had a small tumor in my right clavical/shoulder.  I’m only about one month post Keytruda.  Still fighting the fatigue.  

My main questions are if had symptoms when did you get some relief and what progress have you had in being NSD or relasp and timeframes.  For some reason I’m more scared now than I was when first diagnosed   Just wanted to see how my fellow fighters did.  Thanks, Kim

 

 

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casagrayson's picture
Replies 3
Last reply 4/18/2019 - 9:15pm
Replies by: Riven, sing123, Bubbles

I haven't seen you posting much and was wondering how you are doing..

Strength and Courage,

Susan

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SBailey's picture
Replies 8
Last reply 4/18/2019 - 11:40pm

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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