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
Anonymous
Replies 9
Last reply 8/11/2017 - 11:34pm
Replies by: Anonymous, Bubbles, Jess58

Hi,

 

First post after much knowledge gained from reading brave posts.  God bless all out there.

My wife was diagnosed with stage IV this April.  Needless to describe emotions, pretty much the same as all the posts I read.

 

However, my wife also has follicular lypmphoma and was diagnosed with it two years before.  She was placed on watch and wait until a biophsy of a neucrotic node on her neck dropped the M bomb on us.

 

She successfully did four rounds of yervoy and opdivo.  Mix results.  Due to new mets Dr. recommended clinical trials for which she didn't qualify due to concurrency of lymphoma.  So now want to try Keytruda and Lukian although she benefitted from combo as there was some shrinkage of mets.

 

My concern is that she has the CD10 expression which I understand is not a good thing to have and the SOX10 expression which is likewise bad.

 

She is Braf, Nras and Cart negative also bad because can't resort to trageted therapy.

 

I don't know about the Keytruda / Lukian combo but I'm thinking that some peptide prodrug may be the way to go because of the CD10 expression.

 

Anyone out have any advice on the CD10 or am I getting bogged down of it.

 

Has anyone gone NED on Keytruda after mixed result on ipi/divo.

 

A doctor at MS Anderson recommended Abraxene as second line.

 

Any sight is welcomed and appreciated.

Jess58

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Scooby123's picture
Replies 6
Last reply 8/13/2017 - 12:19pm

Hi guys I started keydruda today, I gave the hospital a list of tablets I take each day. This is Acidophilus a gut bacteria tablet, Vitimin C 1000 and CQ10 120mg . The pharmacy at the hospital could not say if taking CQ10 is OK to do so and need to look in to it. 

 

So anyone also taking this or what vitamins do you take when on treatment.

Thank you

Scooby❤️

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Jenniferp09's picture
Replies 4
Last reply 8/13/2017 - 2:34pm

I had melanoma on my arm with a wide extraction they removed it all.  Now with my recent dermatologist visit they did a shave biopsy and it came back as moderately atypical.  My question is:  has anyone had something removed off their ear? What can I expect?  It's on the back of my ear but close to where my ear meets my head.  I have an appt. with plastic surgeon (what they recommended) on the 29th for a consult but I'm going crazy wondering if I'm gonna lose part of my ear.

jen p vt

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WithinMySkin's picture
Replies 21
Last reply 8/8/2017 - 4:32pm

Hello everyone!

There are a lot of new names and faces on this board since I was diagnosed in March of 2015 stage IIIB. Quick summary of my journey - I tried some serious lifestyle changes, but unfortunately progressed to Stage IIIC and had a CLND of my left groin in Dec. 2015 followed by Interferon. I continued to progress, and went on the Ipi/Nivo combo last spring (while leaving in one of the in-transits). My latests clear scan means that I'm one full year being NED - HOORAY!!! I can't believe its been a year!

I had lots of different side effects and I feel like I tried it all on this wild ride. It's a roller coaster for sure. Cancer is a curse, but at the same time, it's changed my life in so many ways that I wouldn't change my journey one bit. It truly made me realize that EVERY DAY is a blessing and I'm more grateful than ever.

To all those who are still fighting - keep up the good fight! Having melanoma tests your faith in everything - God, family, life, who you are, the whole shebang. Keep the faith. Keep fighting. Give it hell. And before you know it, YOU will be the one here writting about being one year NED! 

Wishing everyone here health and happiness!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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J.bun's picture
Replies 8
Last reply 8/8/2017 - 6:22am

Made it home from my groin surgery on Friday. I was not so nervous about the surgery itself, but more apprehensive  about the recovery process & having a drain. So far it hasn't been as painful or debilitating as I thought it would be.  With that said - I know I am essentially resting for the next 2 weeks. 

Hopefully the healing process continues to go well. I see the surgeon on Thursday and then re-start Keytruda at the end of the month. 

One of the nice things about working for me has been a distraction from melanoma. But, since I am taking time off to recover I need your suggestions - how should I keep my mind occupied/stay busy?

- J.

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baesill's picture
Replies 3
Last reply 8/6/2017 - 5:16am
Replies by: J.bun, Anonymous, sgreenberg

I traveled with Mekinist with a freezer pack but don't think it was totally frozen. When I put it in the fridge at my destination it wasn't cold. Longest it might have been store date improperly is I guess 5, max max 6 hours. Is it bad? Any knowledge on this? 

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yulkame's picture
Replies 16
Last reply 9/14/2017 - 9:44am
Replies by: yulkame, CindyJ, Imen

Hi,
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
metastasis.
Overlap of osseous activity with the spinal cord at multiple levels
including at T3 and T12, correlating with known epidural extension of
disease.
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.
OTHER FINDINGS: None.
IMPRESSION:
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
spine.
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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Dave63's picture
Replies 4
Last reply 8/6/2017 - 5:16pm
Replies by: Dave63, casagrayson, Anonymous

Hi

I've just been diagnosed with nodular BCC and melanoma. I use the VA and pathology report doesn't list any specifics about the melanoma. It was a 10 mm mole on shoulder and they did a 3mm punch biopsy along bottom edge. This was done a month ago and I just finally had my primary care doctor look to see if results had come back. Results were back on 7/21 and no one ever called me and I found out on 8/1. Now waiting to get appointment for follow up which will be at least another month. I have so many atypical moles I can't count. 2 painful ones on my head, some the size of a pencil eraser, some with black dots in them. 2 months ago I started with nausea, fatigue, no appetite and bumps in right side of groin. I'm just scared and don't know what to do. The original dermatologist PA glanced at moles on head and said they were nothing, but I don't know why they hurt and weren't there 6 a year ago.

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I'm being treated at Vanderbilt and I've had some surprising news this week.  I met with the Medical Oncologist yesterday and discussed my options, which were IPI, Nivo if insurance would cover it or I got it for free, or waiting on a clinical trial where they will be testing Nivo versus Nivo + low dose IPI.  We decided it would be best to be proactive and check if insurance would cover the Nivo treatment, and I got a call today that they have approved it.

I know the Nivo + IPI combo has seen some buzz about being slightly better, but not knowing if I would even be accepted into the trial for 4 to 8 weeks (which is when my doctor expects it to start), when I could start Nivo right away seemed like a bad gamble to me.  

I wonder if anyone has any insight into anything I might be missing. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/5/2017 - 7:26pm
Replies by: Anonymous, Scooby123, Bubbles

 My tumors have been genetically tested and I  just have been found to have the NRAS mutation . I would appreciate feedback from  melanoma patients that have been found to have the NRAS expression.Have you been treated with  Mekinist targeting this specific  gene mutation and  were your a responder? What side effects assocoated with that drug have you experienced? Thanks a lot.

T.Chasse

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Good afternoon,

The MRF was contacted by an industry partner who would like to interview a small number of patients to better understand their experiences with specific melanoma therapies. Specifically, they are seeking one patient who has received Imlygic and one who has been treated with a PD-1 therapy. The interviews would be conducted in mid-September via private teleconference with their clinical research team, lasting no more than one hour. If you fit this criteria and would be willing to share your thoughts, please contact Beth Allgaier at ballgaier@melanoma.org. Thank you!

Sincerely,
Adam, MRF

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jagstter's picture
Replies 7
Last reply 8/11/2017 - 10:35am

After way too long, I've finally registered & am making my 1st post. Yay! I feel like I am so much better-informed, due to many of you on this forum ... thank you, all. My hope is to be able to beneficially contribute & help others, who may be struggling in this terrible battle.

I tried to put all the pertinent details in my Bio & Profile ... I'm a classic case of learning via the "School of Hard Knocks," LOL. If I can help someone else avoid making the same mistakes, I'll truly be glad ;-)

I travel to MDA for treatment & just learned I likely have numerous metastases from my primary (July 2015 - Right Posterior Trunk, Clark's Level IV, Breslow Depth 4.0mm, Ulcerated, Lymphatic & Circulatory Invasion, w/ a Mitotic Rate of 33!) to both lungs. Radiologist cites, "Numerous bilateral pulmonary nodules in both lungs, up to 8mm" & provides 5 for example: 6mm, 7mm (2) & 8mm (2), all w/ ground glass attenuation. I've had no previous nodules on prior PET/CT or Full-Body CT scans, going back about 2 years, now. The doctor suggested exposure to hazardous materials or pneumonia (nope!) & agrees there is high probabilty it is, indeed, Metastatic Malignant Melanoma. I am scheduled to go back in mid-December for a 2nd Full-Body CT scan for confirmation. Hoping it is viral but I have no symptoms to suggest. Also, I'm 12 days in on Bactrim regimen for Prostatitis, which would have knocked out any bacterial infection potential. I hate the wait, the prospect of progression, biopsy, drugs ... it is very overwhelming :-(

Hoping & praying for patience, while I wait. Thanks, for reading & allowing me to be a part of this great group!

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MelanomaMike's picture
Replies 7
Last reply 8/5/2017 - 1:13pm

Hi ya'all, first off, hope everyone is well & in good spirits!..i have a delema, as you have learned from me, my Melanoma has crept into my lungs (right is 9cm, left is alot smaller forgot cm) what should i do? Surgery or chemical treatment? Since 2008 i have had 6 surgeries & it still comes back! I figure another surgery isnt gunna cut it, i havnt tried chem yet and it has been offered. My team leans toward surgery first but to be honest im terrified of the surgery...please respond asap! I would like yer input...thanks..

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Oldwife's picture
Replies 2
Last reply 8/7/2017 - 7:07am
Replies by: J.bun, marta010

DH just got the results of his CT scan from last week:

1. No new findings of recurrent or metastatic disease.

2. Previously described precarinaly lymphadenopathy has significantly improved from that seen in Dec. 2016, now minimally visible.

3. Interval decrease in size of a pleural-based nodule in lower left lobe.

He has been on Mek/Taf for five months. Our oncologist is on vacation, but hope to hear from her next week when she returns.

Whew!

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jrtufo's picture
Replies 2
Last reply 8/4/2017 - 4:51pm
Replies by: jrtufo, Bubbles

Hi Caring Friends-So the Keytruda didn't work for me and now I'm moving on to the Cobimetinib/Vemurafenib combo.  Living here in sunny Colorado I'm very concerned about the photo sensitivity side effect (and all of the others...)  Any one on this combo-how is it going, any success and any tips for me?

Julie T stage 3C non-resectable desmoplastic melanoma 

JulieT

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