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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Husband just got dx'd on Wednesday 12/12/18 - our first oncology appointment is Jan 7 2019 and I am scared to death. Not only does my husband have cancer, but the oncology appointment is the same day my dad died in 2002. So THAT day isn't a good day for me anyway. I am a wreck, my husband "appears" to be holding it together. I think he's doing that for my benefit. We have been married for 27 years, this man has never been sick and out of no where .. he has Melanoma. It is on was on his chest and believe me when I say this mans chest has never seen the sun. 

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MichelleRHG's picture
Replies 1
Last reply 12/14/2018 - 11:37am
Replies by: YankeDoodle

Hi, wanting to offer hope to anyone new to melanoma. 2 years ago I was diagnosed with Stage 3, 6+ years after primary was removed. 1 year ago it progressed to Stage 4. I am now 8 months after last surgery with no evidence of disease. Just in time for Christmas! So thankful, and wanting to give encouragement to whomever needs it. ❤

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Hi.  Should I have expected additional findings while on opdivo?

Hx: Small breast lump found July 2018.  (Burning sensation waking me up at night.)  Aggressively grew in 2 months.  6 cm mass removed with mastectomy. Rochester Mayo Clinic pathologist: “Most suggestive of melanoma.” Unknown origin, Derm commented that I have very few moles.  Started monthly Opdivo 9/28/18.  PET scan 12/11/18 shows 1.8 cm in lung, shadow in other lung. Whew, was not expecting that.  August 2018’s PET only had breast tumor.  Breast tumor testing done, not BRAF, its mutations not commonly seen with melanoma. Chest CT scan done, Thoracic consultation on Monday.

Thoughts on new tumor while on opdivo and the “most suggestive of melanoma” pathology.  Common?

Thank you, 

Barb - a healthy, active 59 yo

~ Barb P-P

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lkb's picture
Replies 2
Last reply 12/14/2018 - 10:54am
Replies by: HeidiZ, Bradley75

Scans this week revealed two nodes in my neck positive for melanoma.

For treatment, we’re discussing:
1. Lymph node removal (This would be neck surgery #3 in 15 months. Bleh!)
2. Adding Ipi to current Nivo
3. A series of injections with electroporation and Pembro (clinical trial “Pisces”)
4. A series of injections without electroporation and without Nivo or Pembro or Ipi

Has anyone done #3 or #4? Results? Side effects? Other comments? I’m particularly queeeeeeasy about the electroporation.

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

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kb9718's picture
Replies 2
Last reply 12/14/2018 - 9:43am
Replies by: Bubbles, lkb

Hi everyone, 

Thank you so much for the support on my last post. Im Keira the 22 year old who was waiting on her sentil lymph node biopsy and wide excision and just got them. The good news is it didnt spread to the left arm pit  lympn node but the bad news it did unfourtnately spread to both the lymph nodes he removed on my right arm pit side. I am now having a PET scan next friday and waiting for a call from a specialist for treatment plan information. Feels very surreal and scary but staying postive and keep thinking life is all about your attitiude to what happens to you and Im trying really hard not to be sad about things I cannot change. Thanks everyone for reading this and hope everyone is doing well. He mentioned immunotherapy as a possible option for treatment if anyone has any experience with this. 

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My WLE has turned into a monster Keliod with some lymphodema from the SNLB.

Well the location of this excision has been anything but simple. Stage 1a, but the scar had to run at the back of my knee.

This thing won't heal, though Physical Therapy is helping. I'm doing Vitamin E Oil and keeping up with massaging and stretching to get back the range of motion.

The actual melanoma was 0.9mm, the Keliod is out of control! I also came back positive for CDKN2A P16 so there's that too.

I thought I was done with all this stuff years ago but apparently not. Doesn't it just suck so bad when all you want is to have out it in the past and you get new primaries coming up?

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brianm's picture
Replies 6
Last reply 12/13/2018 - 10:35pm

I have a bit of guilt for some reason.  My treatment has been miraculous.  For some reason God wanted me spared.  I am sharing this in the hopes that I can give others hopes in what they are facing.  Below are two PET/CT scans.  One was from December 2017.  After that scan, many of my tumors began growing 2cm per two weeks.  It just started going crazy.    I was given The nivo/opdivo pair for 4 treatments.  I was able to take all four.  Since then I've been on opdivo every two weeks.   I am almost clear although they will keep me on opdivo for one more year.   My doctor said that when he saw me that he didn't have hope for me because it is common that cancer gets to a certain point and then there is just no time for the treatments to work.  By the grace of God my tumors didn't grow where it would have killed me faster.   My lung tumor got to a size of 12 cm.  It is now 2.7(or near there).  First is the Dec. 2017 Scan, Next is the Nov. 17 2018 scan.

Please fight and don't give up and keep trying.  And thank you for this board.  It wasn't until I cam here that I found others with stage 4.

 

Dec. 2017  ---------------------------- Last Year

CT Chest:

Lungs: Interval enlargement of the right lower lobe mass, measuring 6.1 x 7.1 x 8.2 cm, previously 6.9 x 7.4 cm. The mass abutting the left diaphragm.

Increased left basilar atelectasis.

Additional 8 mm nodule in the right lower lobe.

Airway: Patent

Pleura: No pleural effusion or pneumothorax.

Thoracic aorta and great vessels: No dissection or aneurysm.

Pulmonary arteries: Nonenlarged. No central pulmonary embolus.

Heart and pericardium: There are several enlarged pericardial lymph node masses.

Lymph nodes: Enlarged mass in the right infrahilar region.

Chest wall: There is a 3.5 cm mass in the anterior left chest wall.

Thoracic spine: No definite fracture.

CT Abdomen:

Liver: Multiple low-attenuation lesion in the liver, likely cysts. There is an enlarging 0.9 cm mass in the anterior peritoneum adjacent to the liver capsule.

Spleen: Unremarkable.

Pancreas: Enlarging mass in the head of the pancreas.

Gallbladder: CBD stent in place. There is gas in the gallbladder. There is pneumobilia.

Adrenal glands: Enlarging mass in the left adrenal gland. New mass in the right adrenal gland.

Kidneys: Multiple enlarging masses in the bilateral perinephric fat and along the bilateral Gerota fascia.

Several peritoneal/ mesenteric masses are also seen. The largest one is in the anterior lower abdomen measuring up to 3.1 cm

The abdominal aorta is normal in caliber.

There is a left retroperitoneal mass adjacent to the left iliacus muscle.

Postsurgical change in the sigmoid colon. There are multiple sigmoid diverticula.

 

November 2018   -- Last month ---------------------------------------

FINDINGS:
Head and Neck: There is no abnormal FDG uptake. There is physiologic uptake in the oropharynx.

Thorax: There is uptake with maximum SUV 4.28 (previously 3.5) within the 2.7 x 2.7 cm left lower lobe lung mass (previously 3.1 x 3.4 cm).

Abdomen/Pelvis: There is a 10 mm left adrenal gland nodule with some internal density which could be calcification. Maximum SUV is 2.76 which is similar to background liver activity at 2.7.

Musculoskeletal: There is no abnormal FDG uptake.

Additional CT findings: There are surgical clips in the left neck. There are a few lymph nodes in the left side of the neck which do not demonstrate increased uptake. These are unchanged in size. The bile duct stent is again seen with associated
pneumobilia. There is postoperative change in the distal colon.

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Dwarla's picture
Replies 3
Last reply 12/13/2018 - 8:55am
Replies by: Bubbles, lkb, gopher38

I have not posted in a long time. Since I posted I have had a 3+cm melanoma tumor removed from my bladder. That went well. Shortly after that I transferred to the University of Virginia cancer center. I was eligible for a clinical trial in which I decided to participate. "A trial to evaluate the safety, immunogenicity, and clinical activity of a helper peptide vaccine plus combination of BRAF inhibition and MEK inhibition (Mel61)". I found out that I have a BRAF mutation. I have had 5 of 6 vaccines. My enlarged left axillary lymph nodes started at 2.5cm x 2.2cm and 2.3 cm x 1.5cm as of 9/19/18. My scan as of 11/28/18 states a single necrotic left axillary lymph node remains which now measures 1.8cm x 1.3cm. The small lymph node has disappeared and the largest is considerably smaller. I am so thankful for the clinical trial. 

I have small nodules in my lungs that have been stable for over a year. I also have a spot on L4. I am so excited about the lymph nodes but at the same time, I'm scared another shoe will drop. I've been fighting for 2 years and I know I have to continue to fight.

Dwarla

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grovbollen's picture
Replies 1
Last reply 12/12/2018 - 2:13pm
Replies by: Janner

Hello people. I have recently been diagnosed with melanoma in situ. My mole was around 1-2 mm and had black dots in it, so i got it removed within 2 days of seeing it. Now after ive got it removed, i found another dodgy mole. I went to the hospital where my other mole was removed to get it checked, however they didnt think it looked that dodgy, but said i could get it removed in 2 weeks. I strongly disagree with them, cause it lookes a little worse than the mole i got removed. This one it raised and has dots around its border, the other was flat and only has a black line running through it. Should i call to get it removed earlier? I dont want it to spread just because i waited with getting it removed... :(

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Nympha's picture
Replies 9
Last reply 12/13/2018 - 3:48pm

Hello. My father was diagnosed with MM in april 2018 with 3C stage, breslow 2,1mm. All his organs are clear, but it started to metastate into his skin arround a scar. He has a lot of ulcers, which are damn painful. They grow everyday very fast. He is now on keytruda treatment, he has already taken two of them, but there are still no results. Ulcers are still growing, look like horns. How long does it take when keytruda will stop growing these ulcers (if..)? We are so hopeless. He has such burning pain, no medicament helps, just standing, watching him suffer, we are helpless :-(
So beautiful person, kind, allways ready to help everybody...
Thank you all.

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Amanda's Mom's picture
Replies 1
Last reply 12/11/2018 - 5:56pm
Replies by: Bubbles

Amanda has decided to participate in the above trial.  It is at Phase 1b.  IDK if I agree with her decision, but from what I understand, there really aren't any options left.  Has anyone been on this?  Thank you

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AMcReader's picture
Replies 7
Last reply 12/13/2018 - 5:55pm
Replies by: Anonymous, Hukill, AMcReader, cjm22, VinceMart

Hi all,

I’m just starting to get hit with side effects after my first dose of Ipi/Nivo and am hoping some of you can weigh in on whether or not you experienced anything similar. I also have a note into my oncologist but I haven’t heard back yet. I did seven monthly doses of Nivo and handled them very well, with minimal side effects so these new ones (although expected) are throwing me for a loop.

For the past few days I’ve been experiencing a low-grade fever (never over 100) and been cycling through chills when it hits and then several hours of intense sweating when it breaks. It’s been a little tough to manage. Has anyone else experienced this? Was there anything you found helped to manage these intense cycles?

Today, after having middle of the night chills pretty bad, I woke up with a pounding front of head headache, which now also includes a neck ache where my head hurts more when I move my neck. Anyone else experience this? Any thoughts on what it might be caused from? I’m trying to think that it’s only side effects but of course my brain is jumping all over the place with assumptions.

I also feel like I’ve been dealing with being endlessly thirsty and also having dry eyes. Not a big deal but I hadn’t read about this as a side effect. Maybe it’s cauaed by the sweating?

Any insight you all who have been in the Ipi/ Nivo battle can provide would be helpful.

Hugs to you all.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

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