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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thinkingofu's picture
Replies 5
Last reply 9/21/2017 - 2:40pm

Hello again. Thank you so , so much Bubbles and Cancersnewnormal for answering my previous question. I hope it is OK for us to ask eveyone another one following the earlier thread. 

If doctors would not allow us to have SRS and Infusion ( yevroy+opdivo)  on the same day and we decide to postpone the infusion by one week, would be it be ok to delay it by that much in your learned opinion? In other words: if a patient is supposed to have the infusion every 3 weeks, would having an infusion a week later than planned (at 4 weeks) make the treatment less effective? Or in your experience it happens (e,g, someone is not feeling well, so must delay etc) and doctors are not concerned about it? 

Thank you. You are amazing. xxx

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Hello everyone xxx

As the title suggests, we are due to have a second infusion (yervoy + opdivo) on Monday, however, on the same day mom shall have a second SRS treatment. They state they can either give her her IV infusion or SRS treatment a week later because she cannot have both on the same day. 

If we choose to have the infusion on a later date, it would mean she will get her 2nd dose of Yervoy+Opdivo 4 weeks later instead of 3. 

If SRS, then there will be a 2 week gap between her first SRS and the second one (she will have her first one tomorrow). 

What would you suggest, please? Would someone with mets in brain better to have SRS or Infusion sooner?

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Quick background, stage 4 mel since 2014. Have tried Sylatron, IL2, yervoy, opdivo, trial of palbociclib, trial of glembatumumab vedotin &  now on keytruda.  Having some success with the keytruda, however I have an area on right upper maxillary/palate that is of concern to all.  Dr sent me to ENT who recommended surgery.  The two options were to do maxillary obturator prosthesis or a transplant/patch. Dr  recommended the transplan/patch surgery.  This  would consist of going in through neck up into mouth area to remove tumor, part of cheek bone and couple of teeth.  They will graft skin from leg or arm then "patch" the hole created from the surgery.  This will require a weeks stay in the hospital (2 days being in ICU to make sure transplant takes), be on breathing & feeding tube.  I'm scared but at this point something has to be done .  Wanted to get feedback on what you guys thinks.  Thanks!!

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http://chicagotonight.wttw.com/2017/09/15/study-vessels-spread-cancer-ca...

 

A new study found that the same process can strongly enhance the effects of immunotherapy in melanoma patients being treated with checkpoint inhibitors

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2017 - 2:12pm
Replies by: hellokitty1, JuTMSY4, Anonymous

I've had a brownish stain looking thing under my toe nail for a few weeks now. I thought I had bumped it on something. Three days ago I noticed a small brown spot under my skin on the bottom of my toe. I'm not proud to admit I cut into it about an hour ago. I was hoping it was a blood blister but there was no blood. Just this little hard brown thing that seems to be in the bottom of my toe. There isn't any pain. But Google keeps bringing me here. I am not sure what to do.

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TexMelanomex's picture
Replies 22
Last reply 9/22/2017 - 10:41pm

I wish this was a simple social call but I am back in the Melanoma mix after a short respite. I had a grape sized knot show up directly below my clavicle and back down to MDA today. I got the news that it was a node positive for mel...the blessing and the curse at MDA is that they result needle biopsies in about 20 minutes. CT first thing tomorrow to see what else might be going on and then discuss the battle plan with Dr. Ross and Dr. Amaria. Although I was quite content at Stage II, it looks like I have graduated.

 

I'm assuming that surgery is on the near horizon, but I'm sure what they are going to recommend beyond surgery. Any thoughts gang? I know, I know, there are way too many variables based on the info I gave but my mind is spinning tonight and I will know soon enough.

 

Although, I wish I was back here under different circumstances but even after a quick look through the most recent posts it was easy to see why this was such an inpsirational place 6 months ago.

Tex

Tex

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cberry11's picture
Replies 1
Last reply 9/22/2017 - 7:50pm
Replies by: MichelleRHG

My father recently passed away and we asked in lieu of flowers to donate to MRF.  How can I see the donations that have been made in his name?

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daughter1's picture
Replies 10
Last reply 9/23/2017 - 6:52am

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 

Robin 

 

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rabbits68's picture
Replies 3
Last reply 9/20/2017 - 6:16pm

I had my 2 month scan since starting the Clinical Trial at MSKCC. Yesterday's scan showed significant shrinkage in most of my tumors. This is my second run on the MEK combo with now added Phenformin to see if we can extend the time before resistance. I am so thankful for the reprieve as my pain level is decreased and I am off narcotics and enjoying life and praising the Lord for healing. I love Dr Shoushtari and the team at Sloan Kettering, they have worked hard for me. This trip was definitely worth it!

LisaG

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Anonymous's picture
Replies 5
Last reply 9/20/2017 - 3:10pm
Replies by: Janner, Anonymous, Julie in SoCal, Jamie1960

I have a Malignant melanoma,superficial spreading type, 0.33mm in depth on my back. Melanoma in situ involves the peripheral margin. My Dermatoligist is going to excise and send to Pathology. Why would'nt MOHS surgery be used instead? I asked during my consultation, and be basically said it wasnt the Standard of Care for this type, but everything I read seems to indicate MOHS, so I'm confused! 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/20/2017 - 11:59am
Replies by: KateMG, Jamie1960

Hello, I recently went to the doctor to have a mole removed and also have her look at a mole I am worried about. She looked at the mole and said she noticed it and that we need to just watch it. I am incredibly anxious and so I decided to make an appointment with a dermatologist however, my appointment isn't for another month and I'm trying to be patient but I'm nervous/scared. Here is a picture of my mole, I was just wondering if I could get some opinions about the look of it. Should I be worried? I have been having my husband look at it and take pictures of it and we haven't noticed any changes. Its small but its multicolored which is why I was concerned about it. I am fair skinned and had sunburns as a kid. I went to the tanning bed maybe 3 times when I was in high school. was also wondering what should I ask my dermatologist during my appoinment to make sure I am getting the most thourough exam. Thank you. 

-Kate

http://i.imgur.com/KqaYBOa.jpg

 

Nkmay

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/20/2017 - 11:38am
Replies by: Anonymous

I had an xray of chest for cataract sergery in feb doctor said i had a couple of noduals in lugs a few months later a mole ive had stated to grow in size didnt think nothing of it later it started itching and bothering me had it shaved and found out it is melanoma also ive notice a black spot on my eye and looked at some pitchers of eye melanoma it looks similar im going for mri next week my question is can it metastasize that quickly please help

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/20/2017 - 11:51am
Replies by: Jamie1960, Nemesis

Hi,

 

I was diagnosed today with melanoma after a biopsy.  I have to go next Monday and the Dermotologist is going to re-remove the melanoma that is, remove a larger area and deeper area and then stitch the incision.  I also have another suscipous spot that will be biopsed.  I am freaking out!  Any words of reassurance would be appreciated, please.

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/20/2017 - 8:11am
Replies by: hellokitty1

I was diagnosed with a thin melanoma 7 years ago and a in situ 1.5 years ago.  I'v also had multiple normal and dysplactic nevi biopsied throughout the years.

I recently moved 70 miles from my orignal derm who found these 2 issues. However, I still see a leading San Francisco melanoma specialist (ex head of UCSF Melanoma clinic) 2x per year who recently suggested I get an "ugly duckling" mole removed. He further said it was fine to have a derm in the North Bay do the proceedure.

This new dern removed my mole via "shave" biopsy.  I was not made aware of this before she did it and I did not think to ask her or watch her.  It came back as a slighly dysplastic nevi and now I have to have a full excision and pay AGAIN for both the derm surgery (partially covered by insurance) and for the UCSF pathology (NOT covered by my insurance and $350 each time).

Questions for this group:

- A shave biopsy for someone with my history seems odd and irresponsible. Thoughts on this?

- Anyone know of a good melanoma derm anywhere between Santa Rosa and Marin (Northern Cal).

Thank you!

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Hi All,

Has anyone found a great method for finding a Melanoma primary? I am currently diagnosed as having an unknown primary which is believed to have been on my head by my ear but was beaten by my immune system. However, my recent recurrence by the same ear has me wondering if I have a primary which is just disguised or covered by skin (for example if maybe I picked at it long ago and in the resulting skin healing, it covered the Melanoma). I don't show any spots on a PET scan but I'm concerned that they don't do too well with finding Melanoma on the head because of the background brain activity. At this point my plan is to shave the side of my head (it will grow back to my normal length within 6weeks) and ask two different dermatologists to do their best at finding something. If nothing is found then I'll go back to believing my primary is gone rather than hidden.

Danny

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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