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 2
Last reply 9/29/2017 - 9:56am
Replies by: jennunicorn, Rocco

I was wondering before WLE/SNLB had any 'symptoms' that the melanoma was in their lymph nodes or sentinal nodes? I have noticed an area of tenderness below my collar bone, where the sentinal nodes are. It is on the same side of my body as my mole was. It has been tender to touch, for a few months, but no hard firm lumps, just small soft tender spots. 

Thank you

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Anonymous's picture
Replies 1
Last reply 9/29/2017 - 7:56am
Replies by: Jamie1960

Hi I'd appreciate any input. I have a few moles/ or freckles and are kinda weird and have an irregular border. which I know means I should get them checked out, but the thing is that the two doctors I have brought them up to say I have nothing to worry about because I'm only 18 and then they don't give me a referral to see a dermatologist. One is on my shoulder, the other one is on my breast. Are these abnormal or am I worrying for nothing? 


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Anonymous's picture
Replies 3
Last reply 9/29/2017 - 12:45am
Replies by: jc2dad, Anonymous

Is it possible, or has anyone ever had one type of melanoma and then develop another?  Trying not too worry too much but have bruise like marks on both big toes. Could also be from blood thinners is am on. 

Thanks for any info. 

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Kyrarosee_'s picture
Replies 1
Last reply 9/29/2017 - 12:05am
Replies by: Anonymous

I had a mole sent for a biopsy 2 weeks ago today. MY dermatologist told me it would take 2-3 weeks to come in and she’d call me with the results either way. I’m tired of waiting and not living my life because I am in constant fear. She found 5 moles she doesn’t like and said whatever the result of this one is, is the result of them all so knowing I could have 5 moles that are MM scare me so bad and I just want to know already. 

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Anonymous's picture
Replies 4
Last reply 9/28/2017 - 9:43pm
Replies by: Anonymous, Toby0987, laulamb, Janner

I'm post stage IIa melanoma about 16 months and I just tonight discovered a pea-sized lump in my neck near my throid.  I've been on synthroid for low thyroid for over 20 years.  Does anyone have any information about increased risk of thyroid cancer after melanoma?  I plan to contact my oncologist tomorrow, but am wondering if there is some kind of connection.  Thanks!


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Anonymous's picture
Replies 9
Last reply 9/28/2017 - 5:37pm

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

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barry_g's picture
Replies 3
Last reply 9/28/2017 - 1:06pm
Replies by: Nashvillian, barry_g, Anonymous

I'm newly diagnosed with melanoma in situ on my face and want to be able to make informed treatment decisions. My dermatologist wanted me to make an appointment for excision by him. In his description of the procedure, there was no indication that pathology at the margins would be checked microscopically during the surgical procedure. He also mentioned there could be a significant scar. I would appreciate information on two questions:

1. Don't some surgeons perform a stepped excision procedure and go slowly and check microscopically as they go along so it's a minimal but thorough excision? Perhaps I need to find such a surgeon in my area?

2. Do some patients opt to have a combined excision + plastic surgery procedure to take care of much of the scarring in advance?

Thanks very much.

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MovingOn's picture
Replies 1
Last reply 9/28/2017 - 11:27am
Replies by: MovingOn

Has anyone with hypophysitis from Ipi/Yervoy had their prolactin levels checked afterward?

My prolactin levels are normal from a test done today (8 was my result and the range is 1-17). I don’t believe that I am supplementing them in any way (does another gland besides the pituitary produce some prolactin?) so it may mean that my pituitary is doing something instead of nothing after hypophisitis.

I’m not getting my hopes up but I would really like it if my pituitary starts producing cortisol again someday. The ups and down of the short half-life of cortisol replacement medications have me wishing for a slow release solution (for example, thyroxine is good. It doesn’t have highs and lows but instead is released over time). By the way, my cortisol came back as too low to measure for the second time today even though I’m taking 20mg of cortisone. Going to get that worked out before starting Pembro on Monday.

Wishing you all the best.


Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (nodes in back of ear and parotid)

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jc2dad's picture
Replies 3
Last reply 9/28/2017 - 8:43am
Replies by: Bubbles, jc2dad

Got my genetic testing complete results back today.  I have no NRAS, CKIT, or BRAF mutations but do have mutations in BIRC2, BIRC3, MDM2, and PIK3CA.  I did a little research on these genes and mutations but really can't decipher what it all means as it relates to treatment.  I have found that having the PIK3CA in subcutaneous melanoma, for a white male without NRAS or BRAF mutation is extremely, extremely rare.  Does anyone have any insight?  Thanks in advance.

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yulkame's picture
Replies 18
Last reply 9/27/2017 - 11:19pm
Replies by: yulkame, CindyJ, Imen

My mom was diagnosed with acral lentiginous melanoma on her left foot in June 2016, stage 3c. It was Breslow 4, ulcerated. The sentinel lymph node was positive. The wound originally appeared in January 2016, but was not diagnosed until June.
The PET scan that summer looked clean. We elected to do watch and wait on the lymph nodes, recommended by Dr. Coit at MSK.
In end of October 2016, mom detected palpable nodes in the left groin. The CT scan showed positive lymph nodes in left groin, and the lymph node biopsy with ultrasound confirmed melanoma in the node. The technician poked the node 4 times (twice with fine needle, and twice with core needle).
Mom underwent the lymph node dissection surgery 11/22/2016. They removed both superficial and deep lymph nodes from left groin, since the cloquet's node separating superficial and deep showed positive during the surgery. Out of 9 superficial nodes examined, 3 were positive for melanoma; plus the cloquet node; plus 3 were positive out of 12 examined pelvic lymph nodes. Extra-capsular extension was identified in one superficial and in cloquet node.
In January 2017, the CT scan showed a small met in the illiac bone, and she was put on Keytruda.
On March 27, 2017, after 3 Keytruda injections, the PET scan showed few new bone mets as well as small pulmonary nodes:
-Right proximal femoral shaft, SUV 3.9
-Left femoral neck, SUV 5.0
-Right clavicle, SUV 2.9
-Possible focal uptake in T3 vertebral body, SUV 3.2

We decided to give Keytruda more chance to work and had two more injections every 3 weeks.

In May 2017, mom suddenly felt she couldnt step on her left leg, and the PET scan on May 19, 2017 showed increased malignancy in bone, liver, and lungs:
Marked increase in FDG avid osseous metastases:
-Left femoral neck expansile lytic lesion [SUV 12.9, previously 4.9]
associated with cortical disruption
-Right proximal femur [SUV 18.2, previously 3.9]
-New left posterior iliac bone lesions [SUV 7.2 and 8.9]
-New C3 vertebral body[SUV 8.6]
-Right proximal clavicle [SUV 8.2, previously 2.9]
New mild T11 compression fracture (less than 25 %)
Increase in uptake extent of FDG avid right anterior abdominal
wall/intramuscular soft tissue [SUV 4.0]
IMPRESSION: Since March 27, 2017,
Increased malignancy including osseous, pulmonary, hepatic, and abdominal
wall metastases. Left hip metastasis at risk for pathologic fracture.

So mom was called for an emergency left hip replacement surgery, that was done on May 22, 2017.

Subsequently, mom entered an Ippi/Nivo combo plus Radiation clinical trial, recommended by Dr. Wolchok, and had 2 injections of Ippi/Nivo every 3 weeks (on 6/07/2017 and 6/28/2017), as well as 10 radiation sessions to T3 and T12 of her spine every day starting on 6/22/2017.

Before the last radiation treatment on 7/5/17 , she started experiencing persistent nausea and vomiting. Also severe burning in her esophagus, which was burnt as a side effect to the radiation to the spine. She had difficulty swallowing anything because of the esophagitis, as well as vomiting.

On July 6, 2017, she had a PET scan simulation done to evaluate for radiation to the right clavicle bone, and the scan revealed further progression:

"Increased hypermetabolic osseous metastatic disease. For example:
* C2 vertebra, SUV 9.1, previously 4.8
* Right proximalclavicle, SUV 8.2, previously 8.2, increased in extent
* Right proximal humeral diaphysis, SUV 6.8, previously 2.6
* Left posterior iliac bone, SUV 10.5, previously SUV 8.9, now more
extensive left acetabulum, SUV 7.3, new
* Right mid femoraldiaphysis, SUV 3.4, new
Interval left hip arthroplasty with longstem femoral component with
persistent uptake at the femoral neck, correlating with a site of known
Overlap of osseous activity with the spinal cord at multiple levels
including at T3 and T12, correlating with known epidural extension of
New mild compression fracture at the T12 level with less than 25 percent
vertebral height loss.
Decreased uptake within a right anterior abdominal wall soft
tissue/muscular nodule, SUV 2.2, previously 4.0.
1. Since May 19, 2017, increased malignancy including pulmonary, hepatic
and osseous metastatic disease. Increased pulmonary and nodal disease
since CT of June 5, 2017.
2. New left common iliac and left inguinal nodal metastases.
3. Overlap of activity from osseous metastatic disease with the spinal
cord consistent with known epidural disease better assessed on prior MRI
4. New mild compression fracture at the T12 level, probably unchanged
since CT of June 5, 2017.
5. New diffuse gastric uptake, possibly inflammatory. Attention on
follow-up imaging to ensure resolution."

She got into MSK urgent care center with an episode of atrial fibrillation on July 11, 2017. They also did a CT scan of the brain without contrast, that came back clear. While in the hospital they started noticing a rapid drop in her platelets levels to 35. They evaluated and decided this was due to an autoimmune reaction to the immunotherapy, and put her on daily 60 mg of Prednisone. The platelets were rising slowly to 48 at her discharge a week later. During 6 days at home after that she was feeling really weak and kept vomiting, and on July 24th, she fainted while getting up (her husband caught her) and we went back to the MSK urgent care. There they saw the platelets dropped back to 35, and started suspecting the bone marrow involvement. We refused the bone marrow biopsy, since after discussing with Dr Wolchok, our best bet is to try more immunotherapy (Ippi/Nivo) and they are planning to do it on Wednesday next week. It looks like mom is not eligible for any other clinical trials, since her platelets are around 24 now, and the minimum requirement for the trials is 100 (sometimes 75).
She had blood transfusion done before getting discharged from the hospital this Friday, since her hemoglobin dropped to 7.
It looks like we are down to very few options, if she is going to keep progressing on ippi and nivo.
Anyone has any suggestions for potential other effective treatments, for a 63 year old, with bone-centric acral lentiginous melanoma? Please help.
Note also, that mom has been following Gerson diet for a year with about 5 fresh juices per day, all organic, no sugar, no meat. But she started losing faith in it recently, and introduced the chicken, fish, back after her hip replacement surgery, since she needed strength. Now she cant hold much down anyway, with the nausea and vomiting. Today she had diarrhea and fever (up to 100.1), and we notified the melanoma fellow on call....
Any treatment suggestions, given her history, including the alternative clinics that were effective for the people that you know personally, are really appreciated!!

Thank you very much!

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Anonymous's picture
Replies 2
Last reply 9/27/2017 - 7:24pm
Replies by: Anonymous, Julie in SoCal

Any thoughts or experiences with nivo plus radiation?

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Jess58's picture
Replies 4
Last reply 9/27/2017 - 6:57pm
Replies by: Jess58, jrtufo, Cindyco


Looking for help.

My wife is Stage IV, in lymph nodes and bones. Found out April 2017. Total surprise.

She has concurrent follicular lymphoma which has disqualified her from every trial up to now.

Progressed after 4 rounds of ippi and divo.

Had one dose of keytruda and doctor stopped due to new Mets.

Now getting radiation for pain.

After radiation Dr will start her on Abraxane.

She has no mutations.

Hopefully she'll qualify for trial so no one will take her even though follicular lymphoma is indolent.

Hope abraxane works post one round with keytruda.

Was in contact with Dr Davies at MD Anderson whom successfully tested patient with Abraxane and keytruda after profession on ipi and divide, but our insurer won't cover that combo. I got them to cover Abraxane but it was like pulling teeth.

All advice is most welcome.

So far we have not caught one break.

God bless


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lshepard27's picture
Replies 1
Last reply 9/27/2017 - 8:15am
Replies by: Bubbles

My partner, David, was diagnosed w/ Stage 4 in February. Lesions in the brain, lung and liver.  Surgery took out 3 lesions in brain. Started clinical trial of Yervoy and Opdivo/Nivo.  Could only handle one round of double. Since May has been getting Opdivo infusion every other week.  3 remaining tumors in brain are too small to measure, everything else has shrunk consistently. 

But now, he has cancker sores in his mouth that seem directly related to the infusion. The farther from the infusion, the better it gets. But it's severely impacting his eating.  He's lost 7 pounds in last 6 weeks.  Dr. Atkins @ Georgetown, who we love, says he hasn't seen canker sores as a side effect. 

Anyone know anything about this side effect?  Or what to do? Thanks, Lisa

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Dwilkinson's picture
Replies 2
Last reply 9/26/2017 - 10:34pm

Any advice?

I need to get my path report tomorrow to see it with my own eyes. But I had a mole removed for suspected melanoma on 8/28. Path went off to Mayo for several weeks, had cytogenetic testing, melanoma FISH, not sure what else and came back the dermatologist told me today "Severely Atypical Sptiz Nevis, Malignant Melanoma can not be ruled out"

She found 2 other moles she didn't like that she shaved off and sent off to Mayo. She told me I'm in a rare "grey" area where no one knows how to treat me because people my age typically don't get these moles? I'm 34 and my mole appeared after a month in the tanning bed 2 years ago. It started as a scab and when it healed it was a mole. It was on my leg and I couldn't see it so I just never did anything about it. I did already have a wide excision and she said my margins were clear but weren't 1 cm.

She said that 20% of people who have a lymph node biopsy will get a false positive for melanoma and could cause me to get unnecessary treatment. If I want a second opinion, where do I go? Oncologist? Another dermatologist? 


Thank you you for your help! I feel confused and lost. 

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