MPIP: Melanoma Patients Information Page

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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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DoubleTT's picture
Replies 15
Last reply 2/15/2020 - 9:42pm

Melanoma second metastasis now. First met was to T12 spine did SRS and then adjuvant Nivo for 12 months. 3.5 months later as of this week I have a 6mm tumour on the periphery of my left posterior temporal lobe.
Docs want me on ipi/nivo combination...at the same time SRS with Gamma Knife or craniotomy. I will know Friday full plan. my question is do you have a certain size of lesion for a craniotomy? I am NRAS which is bad I know . So is it better to zap it or take it out ? My met to my T12 spine was zapped successfully. I guess brain Mets are a whole new issue when it comes to treating them? Here in Canada you go to the Brain Mets Clinic at Princess Margaret Cancer Centre and get a second team that just focuses on the brain mets. What am I to expect? ugghhh...

Double TT- Toronto Canada

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Dr. Charles Drake is a leading expert in research into T-cell and following video is from NYC Immunotherapy Patient Summit 2018. https://www.youtube.com/watch?v=YAjIjxjmm8o

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Julie in SoCal's picture
Replies 11
Last reply 2/17/2020 - 2:30pm

Good morning, Friends!

Yes, melanoma is an E-Ticket ride filled with ups and downs and all kinds of surprises.

Last Tues, Dr. E took out 3 blobs of melanoma meat. The largest was 2.4 x 2.4 x 2.0 cm, my largest to date. In the past, I've had many of these removed before and sometimes I've even had them removed with just a local. This was just fine, though keeping my arm still and in whatever odd "yoga" position the doc wanted it in was a challenge. This time, the doc wouldn't do it under a local. He just explained that I didn't need to be awake for all of this. I took his advice.

And I'm so glad I did. I am now the proud owner of two very impressive, 6-inch incisions all up the backside of my arm! It looks like a shark bit me. Twice! So that's the story I'm going with... I was surfing the pier and two sharks came from the depths and took a chunk. Of course, I finished my run of the pier and then got medical attention ;-). Anyone who knows this SoCal Girl will know that Julie doesn't surf-- tried it many moons ago in high school and found that it's cold and wet. Mountains are more of my thing.

Ok, so forgive all my many references to SoCal in this post. I'm just playing and very happy to be NED again!

Wishing you peace,
Julie in SoCal

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/17/2020 - 11:03pm
Replies by: Lucas, TarlieT, Linny

Hello - Stage IV here and have completed four Opdivo/Yervoy treatments.

Just wondering if rising LDH levels are anything to be concerned about? I started in the normal realm of LDH when I was diagnosed, but my last labs shot up from 218 to 369. I'm reading that this may indicate further metastasis, but am unsure. Can any experts weigh in, please?

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

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sister of patient's picture
Replies 3
Last reply 2/18/2020 - 10:43am

Just posting this to add to the knowledge bank - in case anyone else is ever searching for info on this topic:

My sister, Leisa, had two skull lesions discovered last fall, after 2 years of being NED. One is located on the inside of her forehead, right frontal lobe area; the other is in the back of the skull and is in an area that is totally inoperable. The first was discovered with a regularly scheduled MRI, the second was found with followup scans that included a bone scan, CT of just the head and repeated MRI. A treating neurosurgeon wanted all scans repeated and then a PET scan done pending a plan to remove the lesion from her forehead (like a WLE but in bone). BUT - great news - after all scans were repeated (no PET), images are showing that both of them have decreased in size by half - yayyy!!!! So, plan now is just to watch and see what they do. They've never really acted like mets - they could actually just be cysts on the bone but of course, with her history, they are suspect. For now, we're happy with this!!!!!

Wishing great things for everyone here!!

Barb

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Anonymous's picture
Replies 7
Last reply 2/18/2020 - 12:43pm
Replies by: Anonymous, CHD, cancersnewnormal

I'm hoping someone here might be able to offer an educated guess as to what's going on with my groin. I've asked my oncologist and dermatologist about it, and they both say it's nothing to worry about, but it's pretty terrifying having groin pain on the same side that the melanoma was removed, and not having the doctors give me any real idea at all about what might be causing that pain.

The situation is as follows. I was diagnosed with Stage 1A melanoma last May (2017). The biopsy reported 0.38 thickness, no ulceration, mitotic rate of zero. I was extremely relieved at the time because I knew the biopsy report was about as good I could have hoped for, short of it being melanoma in situ.

The problem I'm having now is that starting about a month or two after the WLE, I've had groin pain (same side as the melanoma) that has been getting progressively worse. It started with barely noticable groin pain that I wasn't even sure was real or just imagined. Over the past six months or so, it's gotten progressively worse to the point where now I feel almost constant tingling on my groin.

There are no palpaple lymph nodes in the area that's bothering me. I went to my oncologist and he felt around the area and told me it's nothing to worry about (but didn't offer any suggestoin as to what might be causing the pain). He said I could have an ultrasound done on the area if I was really concerned, so I did that, and it came back fine. No swollen lymph nodes or anything else they would consider alarming.

I also saw my dermatologist and told him about this and he said it's nothing to worry about. I asked if the WLE itself could be causing my groin pain, and he seemed to nod in agreement to that being a possibility, but he stopped short of actually giving me any personal opinion on why my groin is constantly sore.

My foot on the leg that had the melanoma has been swollen since the WLE, but it's been getting better gradually. A couple of months after the WLE, it was extremely swollen, and now the swelling is barely noticable (but still a bit swollen compared to my other foot). I might be able to comfortably assume that the groin pain is related to the foot swelling, but if the two were related, it seems backwards that the groin tingling would be getting worse as the foot swelling gets better.

So that's where I am today. A constantly tingling groin on the same side as my melanoma/WLE, a clear ultrasound, and no real idea at all about why or whether I should be worried about it.

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jennifer83's picture
Replies 11
Last reply 2/18/2020 - 5:04pm

Haven't talked to my doc yet, but this looks good to me :)

These are the results of the scans I've had after 4 months of ipi/nivo treatments following Stage 4 diagnosis:

Study Result
Impression
Interval decrease in size of the left hilar adenopathy and pulmonary metastases. The hepatic metastases have decreased in the interim.

The subcutaneous of the peritoneal metastases are noted along the visualized.

Narrative
FULL RESULT:

Examination: CT CHEST ABDOMEN PELVIS W CONTRAST, 2/15/2020 9:42 AM

Clinical History: Secondary malignant neoplasm of liver and intrahepatic bile duct
Secondary malignant neoplasm of bilateral lungs
Secondary malignant neoplasm of bilateral lungs
Metastatic malignant melanoma

Indication: assess for disease response

Comparison: November 9, 2019

Technique: CT of the chest, abdomen, and pelvis was performed with intravenous contrast.

Findings:

Technique: Multidetector helical CT data acquisition of the chest, abdomen and pelvis was performed at 2.5 mm axial slice reconstruction following administration of intravenous and oral contrast material.

COMPARISON: November 19, 2019.

FINDINGS:

CHEST: The heart is normal size.

The left infrahilar adenopathy has completely resolved soft tissue is noted in this region measures 0.3 x 0.5 cm and has decreased in size from 2.5 x 1.6 cm.
The metastatic lesion present within the left lower lobe has decreased in size from 2.9 x 1.5 cm to 0.9 x 0.6 cm.

Abdomen and pelvis: Hepatic metastatic lesion present within segment IV measures 1.4 x 0.9 cm and has decreased in size from 2.7 x 2.3 cm.
There is no intrahepatic or extra hepatic biliary ductal dilation.

The spleen, the adrenal glands and the pancreas are normal.

The kidneys demonstrate symmetric contrast enhancement and there is no evidence hydronephrosis. Stranding is seen within the retroperitoneum along the aorta and the celiac axis, is nonspecific and can be followed. The omental nodule seen on the prior examination is no longer visualized.

Sections through the pelvis demonstrate no fluid collections. There is no pelvic or inguinal adenopathy.

The nodules present within the left gluteal region in the anterior abdominal fat are no longer visualized. No definite skeletal metastases are noted.

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Tsvetochka's picture
Replies 3
Last reply 2/18/2020 - 8:15pm
Replies by: JudiAU, doragsda, Edwin

I just had a full body PET CT scan with contrast. Now my doctor wants me to have an MRI to check my brain. Wouldn't that have been on the PET scan? I could see my head in the images I sent on to the doctor. The write up starts with "Head and neck." Is that not enough?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

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hxcadam's picture
Replies 7
Last reply 2/19/2020 - 6:29am

I posted a week or 2 ago about my story and since have been only prescribed Nivo from my doctor. I questioned her and she kept reiterating how toxic Ipi is. But everything i've read says Stage 4 SOC is Ipi+Nivo combo. And even if side effects occur and you don't finish the complete regimen the results are the same. Is this the case? Is my Onc being too cautious because I got Colitis 3 years ago when I was dx Stage 3c and got Ipi by itself. I believe I got it at a much higher dosage as well 10mg/1kg sticks in my mind. Will it be too late to start the combo if my scans in 2 months show no change? I'm BRAF positive with 2 small brain mets, 2 lung and 1 spleen. She seemed to think next step would be Mek inhibitors I believe. I'm just trying to get the best chance possible.

Thanks,
Adam.

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Had surgery on Jan.31st to remove 2cm mass on outside wall of sigmoid colon that was suspected to be melanoma,. Surgeon called to check on me and let me know path report said was not melanoma! Finally some good news! So fingers crossed for PET and Mri fisrt of March. Hope everyone here gets some good news this year as well. Great site with great people and great information! Thankyou all for all your support for me and others that end uo here!

Joe

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Citrus89's picture
Replies 8
Last reply 2/20/2020 - 10:16am

Hi everyone! I am new to this site but not new to Melanoma. My husband was diagnosed in 1996 with stage 3 melanoma. He had widen insecion with clean margins and a sentinel node biopsy that showed it did not travel. No further treatment was done. Fast forward 23 years of taking care and watching closely, the melanoma returned in a mass on the back of his eye. A needle biopsy confirmed it. A pet scan showed a few other spots but not in any major organs. The biggest spot was in his adrenal gland. We have a good oncology team but we did make a quick trip to NYC to see Dr. Chapman who confirmed the treatment of the combo. He suggest 2 treatments and then a rescan. Our oncologist was open to rescanning after after two doses. On Feb 5, my husband had his second treatment. The side effects this time have been all stomach related with diarrhea and acid reflux. Our physician has been prescribing all over the counter drugs including Imodium, nexium and gaviscon. He has barely eaten in days and nothing stays in. I would appreciate your thoughts and suggestions.

Thank you

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swissie's picture
Replies 5
Last reply 2/20/2020 - 10:56am
Replies by: swissie, ed williams, MelMel

Hello all

As many off you, I feel lonely during a difficult time of waiting for results.
My history: 1992 first melanoma, 2008 second melanoma.
2009 spread to the lymph nodes (with spreading in surrounding fat tissue).
2009, Participated in a double-blind trial with 10 mg/kg ipi, however I was in the placebo group.
So basically, I am an untreated Stage IIIb patient without recurrences.

Had 3 moles removed since 2009. Two on my request, they were ok. One as the doctor saw it, this was atypical.
Last week another mole was removed. I’ll have the results next week. And I’m freaking out.

I do not want to scare my friends and family. Most new friends have no clue what it is.
One of my best friends is in the hospital with a burn out and she totally freaked out when she heard. I ended up comforting her.
But I am scared. The numbers are pretty much against me, right?

My last scan (in the trial) was in 2016, after that my doctors told me I’m too young for regular scans (46). If the cancer is back, I will request a scan.
Any advice from you on having scans? Shall I ask anyway? I know this beast can always come back, but as I’ve been clean so far, I don’t know if I should ask or not.
Also, if you have any advice on how to get through the next week?
Thanks

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sks2019's picture
Replies 1
Last reply 2/20/2020 - 11:47am
Replies by: tschmith

Just read JuliefromSoCal update and thought I would share on whats going on and see if anyone has any experience with this and can provide any inputs.

so there are numerous tumors on the liver biggest one being 7 cm.. mom is being treated at UCSF.
GI oncologist discussed options
1) 70% liver removal which will still leave some small tumors on the left lobe and if the liver grows back fast so does the tumors as well so basically no benefit of going through this radical surgery.
2) RadioEmbolization - which is like injecting radiation beads next to the tumor to kill it. so its a one time procedure and then scans after 1 month. He also discussed if the melanoma specialist would want to add a chemo pill for 2 weeks to make it more effective.

I am very hopeful that this will kill the liver tumors and then maybe we can think about getting into the Xmab20717 trial from Xencor/

How do you folks feel about the plan and Does anyone has any experience with radioEmbolization to the liver ?

thanks

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Lori0529's picture
Replies 4
Last reply 2/20/2020 - 12:01pm
Replies by: Lori0529, Bubbles, tkoss

2008 -- Melanoma in situ (lower right leg)
2015 -- Melanoma 2B upper right leg (Sentinel Node Negative)

2020 -- CT scan showed swollen right groin lymph node -- Biopsy confirms Melanoma -- now stage 3b

Treatment plan is Opdivo/Yervoy -- followed by a Superficial Inguinal Lymph Node Dissection
(Lymph node with checked along the way to evaluate effectiveness of Immunotherapy)

Surgeon also recommended a Plastic Surgeon work WITH him to o perform a Lymphovenous Bypass during Superficial Inguinal Lymph Node Dissection to lower the risk of lymphedema.
(veins are used for fluid drainage)
It's my understanding that this surgery has mostly helped alleviate lymphedema from PREVIOUS surgeries. This surgeon tries to prevent it.

Now the plot twist:
Met with the plastic surgeon today.
He is concerned that a Lymphovenous Bypass on the right side will drain fluid from the right leg directly into the veins without "filters".
This is concerning should I still have melanoma cells in the right leg or have a recurrence there in the future.

He would like to consider a Lymph Node Transfer during the Superficial Inguinal Lymph Node Dissection.
Lymph nodes will be taken from my left underarm and placed in the right leg

He said this surgery has successfully helped alleviate lymphedema in patients experiencing swelling from a previous surgery, but there is not a lot of outcome evaluation for patients getting this surgery DURING Superficial Inguinal Lymph Node Dissection.

Has anyone had this surgery?
Those who have had Superficial Inguinal Lymph Node Dissection -- what should I be considering?

My thinking:
Priority #1
Do everything possible to minimize melanoma spread/recurrence

Priority #2
Try not to end up with life-long leg swelling

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