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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Raeofsonshine's picture
Replies 3
Last reply 10/11/2017 - 12:30pm

Hi all!

14 month post WLE and CLND.  Stage 3a.   Was followed up with pretty closely the last year.  Last PET was June.  A little "hot spot" appeared in the outside of my calf about 6 inches above/ right of my WLE.  Had an MRI and was told they thought it was nothing.  A couple of weeks ago I started to notice a pea size lump in that spot.  Anyone here have any experience with intransit mets and any insight to offer?  

Thanks much!

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iskitwo's picture
Replies 5
Last reply 10/10/2017 - 10:12am

I am a year out from diagnosis stage 3A. I had two primaries one on left chest and one on left middle/ lower back. We are doing scans and watching. So far all scans have come back good until this last scan and it said "There has been development of a 5 mm nodule within the left lower lobe. No pleural effusion is seen." Doctor said we would rescan in 3 months and see if there is growth. He mentioned that it was still very small and in a bad location to biopsy. How concerned should I be at this point? 

Missy

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Anonymous's picture
Replies 4
Last reply 10/27/2017 - 4:57pm
Replies by: Twhite00000, Anonymous, MovingOn, Mat

So it looks like this may be the end of the road on Keytruda for me. I’ve had a more than 50% reduction in my Mets (mostly the lungs, liver and lymph nodes) on Keytruda, but recently had a medium sized new met pop up in a lymph node, possibly more than one. Looking at my options (based on doctor conversations and lurking), i see

1. Braf/mek inhibitors

2. Chemo or biochemo

3. TIL (although it’s unclear whether my Mets are harvestable)

4. Ipi + maybe Nivo

5. A pd-1 + experimental agent (lag-3, HDAC, IDO....others?) clinical trial

6. Something I’ve not heard of before - systemic vaccines? New mabs?

has anyone here had a durable CR after failing a year of Keytruda (that would be FANTASTIC to hear!)? What did you do? Anybody get a mixed response or durable remission afterwards? Any suggestions from the science-minded folks on here? Honestly BRAF targeted therapy is not very attractive to me since the disease is moving fairly slowly at the moment. I am not pain and/or brief misery averse.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/8/2017 - 11:54pm
Replies by: ldub

I had a squamous cell taken off my leg earlier this year. I went back in last week for a six-month recheck and pointed out a pink spot on my arm. The dermatologist said it looked like a basal cell so she biopsied it. She called Friday to tell me it's an amelanotic melanoma. Stage 1 and 0.5 mm on Breslow scale. She's sending the biopsied skin in for a DecisionDX gene testing. While I know it's an early stage, and she doesn't recommend lymph node testing, I'm pretty much freaking out and my anxiety is increasing greatly over the weekend. The WLE is set for October 17. Here looking for support and guidance. 

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Rebeck88's picture
Replies 5
Last reply 10/12/2017 - 11:25pm
Replies by: jennunicorn, Rebeck88

Does anyone know how to get an appt at UCSF sooner than a month away? My 68 year old father was just diagnosed with metastatic melanoma with unknown source. Even his surgeon thinks this is an urgent case. How can we get in sooner? I'm going to start calling every morning on Monday hoping to score a cancellation. Any other suggestions?

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/9/2017 - 11:43am
Replies by: Anonymous, Christinad, Bubbles

Hi all! Just wondering...has anyone else experienced family running for the hills upon hearing of a diagnosis? When my son was first diagnosed about a year ago, the in laws stopped over once right around the time of his first surgery and proceeded to cry as if he were dying - so not exactly helpful, but at least it seemed they cared. Since then, nothing.  We’ve recently tried to improve the situation and outright suggested that a call once in a while would be so helpful. That request was met by outraged excuses that they are too busy,they don’t like making phone calls, and that “why call for bad news?”. I understand that everyone has different coping skills in tough situations, but it’s harder to be understanding about that when it’s not me being hurt - it’s my son. While I hope no one else has experienced  this kind of abandonment , a little advice on how to improve things would be appreciated. 

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J.bun's picture
Replies 3
Last reply 10/10/2017 - 2:59am
Replies by: obtu.bt, J.bun

Just wanted to give a brief update on things since my groin lymph node removal back in August. First of all - how is it already October? Time has really blended together for me this year with so much focus on different treatments and recovery. 

Surgery went well, and I can’t say I used my time on medical leave as “wisely” as I would have wanted - but did get to watch a few series on Netflix and just rest.

My pathology report was excellent (attributed to Taf/mek I took in the two weeks leading up to surgery). In terms of recovery - I love and live in my knee high compression stocking. I started wearing it about 3 weeks after surgery. Then, when I got my drain out - started wearing Spanx shorts - which have helped immensely in swelling reduction.  I do look forward to when I won’t need to wear it all, but it has not been too much of a nuisance and I can still feel a bit of fluid where it doesn’t belong. 

I also made sure to start physical therapy 1x week - recumbent bike, manual massage, and taping (not bandaging) to prevent lymphadema and get fluid going up.  

I’ve also had 3 rounds of Keytruda since surgery - thyroid numbers are starting to change, but not feeling any different so far. 

Best wishes to everyone in their treatment. 

- J.

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TexMelanomex's picture
Replies 7
Last reply 10/9/2017 - 8:29am

Warriors,

I just returned from MDA and have completed all my preliminary labs for the PV-10/Pemrbo trial.

Here are my starting points: One 45mmx40mm node tumor (infraclavilcular), One 17mm node at the Hepatic Portal (liver), and one 10mm gastric node. No organ involvement at this point.

Possibly more node involvement in the left armpit but was not detected by CT so will be examined with ultrasound on Tuesday when treatment starts.

I have been super clean with my diet for the past 2 weeks (I know not very long, but I have already seen a 17 point drop on my systolic BP and an 11 point drop on diastolic BP not to mention losing 5 lbs). I've been very strict, even while traveling eating whole, clean foods no junk. I have also began taking ImmunoPower Ultimate A & B supplements (anyone have any experience with these?) but since they are offered by Dr. Patrick Quillin I added them to the arsenal.

Finally I have incorporated meditation into my daily routine and at a minimum getting in 30 minutes of some form of cardio daily. Returning back to strength training next week as long as the Pembro doesn't do something unusual to me. I'm already a spiritual person (Christian) so prayer is not new for me.

I'm not entirely sure how much all or any of this adds to the treatment equation, but like I said, I'm going to war and trying not to leave anything neglected that could be helpful (I do know that I feel healthier, more calm and focused, and I'm generally just feeling better mentally and physically doing the things I'm doing).

I'm really surprised how little emphasis any of my docs put on the nutritional and exercise side of this...it just doesn't seem important to them but I really don't understand why. It seems that the fuel we take in would have a profound effect on our health, immune reponse, overall well being etc. I know Western Medicine mostly focuses on cutting and prescribing but when I asked my team about it...the response I got was "take a multivitamin, that might help".  Anyone else run into this?

More to follow once I get the first treatment under my belt.

Tex

 

Tex

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stacijane's picture
Replies 3
Last reply 10/7/2017 - 8:09pm
Replies by: Fitzinop, stacijane, SABKLYN

Anyone have experience with this center? I'm seeing Dr Ernstoff on Monday for my first consultation. I believe he came to Buffalo from the Cleveland Clinic.

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Jimchief's picture
Replies 1
Last reply 10/9/2017 - 10:53pm
Replies by: Anonymous

Still early on in this process. Had WLE (primary tumor was 6mm+, so there's a big old scar down my thigh) and SLNB on Tuesday. Pathology on the SLNB came back today. 

Apparently, I drained to only one sentinel node, so they only took one. The good news is that there is clearly no MACROmetasteses. However, they seem to be unsure if there's MICROmetasteses

Pathology says:

Left inguinal sentinel lymph node:

-- Two SOX10+ cells of uncertain significance (see comment)

Comment: There are two cells in the subcapsular sinus of block A4 that
demonstrate nuclear SOX10 positive signal. They are concerning for
micrometastatic melanoma, identifiable by immunostain only. However no
corresponding cells are identified on the Melan-A immunostain or the
hematoxylin eosin sections and it is difficult to be sure of the meaning of these two cells.

Later it says: 

Size of largest metastatic focus: Two cells measure less than 0.01 mm in diameter.

Based on my (probably incompetent) poking around in the medical literature, it sounds like SOX10 is a better "identifier" of micrometastatic "action" than Melan-A or hematoxylin eosin, so that would make me think that maybe there is micrometasteses, BUT there's only two tiny cells that show that give off the SOX10 signal, so maybe not?

If I understand staging correctly, I'm either Stage IIC (T4bN0M0), or I'm Stage IIIB (T4bN1aM0).

They're planning PET scan and brain MRI next, but if those come back clean, am I right that my optimal treatment plan would be significantly different if I'm Stage 3B rather than 2C?

I'm curious if any of the good folks on here (and you guys are amazing BTW) have faced this "has it metastasized or not" question before. Overall, I'm obviously thrilled that there's no obvious micrometasteses, but I'm wondering if those who keep on the medicine and treatment plans would suggest treating it more like a 2c or more like a 3b if we don't learn anything more? (Or maybe it doesn't make that much difference and my assumption that the treatment plans would be way different is incorrect?)

If anyone has thoughts/suggestions, I'd love to hear them. Thanks again for all the good work so many of you do in giving guidance and advice!!

 

 

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Dave63's picture
Replies 10
Last reply 10/6/2017 - 10:57pm

I had a WLE to remove melanoma and plastic surgeon used dissolvable stitches under and on top of incision. This was 3 weeks ago.  The scar has started leaking a pink fluid and internal stitches are coming through. I pulled on what I thought was a scab and 2 inches of stitches came out. It seems like the surface healed up ok but it feels like there is a big hole under the skin. Is this normal?  I have never had this done but it seems like the stitches under the skin didn’t hold. I had BCC removed from my face on the same day and was stitched up the same way and it healed fine.

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It's been years since I've been on this site, and I am grateful it's still here. 

Four or five years ago, my derm performed a shave biopsy of what turned out to be a benign lesion.  I've had lots of shave biopsies, so I know what they should look like after completely healed.  This one, though, has been red and scaly/scabby the past year. I have mentioned it to my subsequent derms and both have said, "It's a shave biopsy site from a benign lesion and sometimes they can look like that after healing."  None of my many other healed shave biopsy sites look/feel like this, nor have they changed in appearance.  Is there anything to worry about?  

Thank you!  

"May the odds be ever in your favor."

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Weaver1228's picture
Replies 3
Last reply 10/6/2017 - 10:16pm
Replies by: Anonymous, Weaver1228, Janner

*I will preface this post by saying I am a 34 year old female with a previous past of basal and squamous cell carcinoma. I am currently 17 weeks pregnant.

I have had an evolving dark spot on my left posterior shoulder for several months (6-8mo). It became pretty dark (almost black) and very raised. I decided I needed to have it looked at. I had my biopsy done on September 15th and it came back as a malignant melanoma with a depth of 1.20mm and Clark's level IV, both peripheral and deep margins positive as well.

I have been prepped and prepared for surgery to remove the tumor and preform the lymph node test this coming Tuesday. I met with the OBGYN team this afternoon to go over the protocol for the surgery in regards to my pregnancy. I feel as though I have been fairly calm throughout this process until I just received a call from the Pathologist who is working with my case who said he wants to get a second opinion because he is not sure it is melanoma now and that it could take WEEKS to get my results back so the surgery has been put on hold. My lab work has already been reviewed by two other dermopathologists and several oncologists who are all in agreement while the original diagnosis. Because the risk factor increases the further along I am into my pregnancy, I'm not sure where to go from here.

Has anyone had a malignant melanoma and then be told the diagnosis was wrong? Especially with a depth and Clark's level read such as mine? How prevalent are false positives with melanoma? I feel as though even if it does come back as negative I will likely have trust issues with my doctor for putting me through this stress. 

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Scooby123's picture
Replies 2
Last reply 10/6/2017 - 11:12am
Replies by: Scooby123, Bradley75

Hi guys, hope all well as can be.

had bloods today thyroid gone down even more from 0.4 to 1 so doctor called got to go on thyroxine medication.

 

on keydruda 4 round next Monday thyroid was going down before starting  keydruda but  do have family history of thyroid issues.

anyone on treatment for thyroid issues either from history of family or due to treatment how long does thyroxine start to work in your system . I believe he starting me on a low dose to start with.

i am going through menapause too so some of the symtoms I have been experienceing thought it was normal due to my age ect.

scooby❤️

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Dwilkinson's picture
Replies 2
Last reply 10/6/2017 - 11:38pm
Replies by: momof4boys

Has anyone seen Dr. Marr at UNMC before? I’m heading to her today for my first oncology appt. 

Wondering if anyone has opinions. Thanks!

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