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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have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  

 

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susan-scalp MM 2014's picture
Replies 4
Last reply 12/18/2014 - 8:35pm
Replies by: Janner, susan-scalp MM 2014, Anonymous

Hi everyone.  I am new here.  Diagnosed with Stage 1B Malignant Melanoma on top of scalp in June this year. Due to complications I cannot have surgery under general anesthesia. My question is can an ultrasound detect an enlarged lymph node I may have in my neck and if so can it be biopsied accurately and treated without surgery?

Susan

It is well with my soul!

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Ann from Iowa's picture
Replies 2
Last reply 12/19/2014 - 7:18pm

If you have had carpal tunnel surgery and have lymphedema in that limb what were your results as far as complications go.  I know my husband was told not to so much as have a blood pressure cuff put on that arm so am wondering on the wiseness of doing this surgery.  The orthopedic Dr. said if he doesn't he will continue to lose strength and dexterity in that hand.  He has Stage IIIB melanoma and has been NED since treatment ended at the end of 2010.  He will at the same time have surgery on that elbow to unpinch the ulnar nerve that is also causing loss of sensation in his left hand.  They said it is severe on both hands so needs the surgery done on both.  We are only concerned about the arm with lymphedema.  Any response on results or if this surgery is advised  would be very helpful.    He had 5 high dose radiation treatments to his underarm when the melanoma returned to the lymphnodes and then a year treatment with Leukine.  Seems to have done well since until this.  Thanks for your help. 

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Anonymous's picture
Replies 3
Last reply 12/18/2014 - 5:51pm
Anonymous's picture
Anonymous
Replies 3
Last reply 12/18/2014 - 8:25am
Replies by: Anonymous, Marianne quinn, Lil0909

I seriously made my new oncologist upset when they posted my CT results in my account before I had my appt to go over the results. I cancelled my appt based upon the stable results. I am IIIB positive ulceration, mitosis 18, one node positive. 18 mo out from dx. The new oncologist called on phone to blast me and said I would now go to chest X-rays only?! Is that the usual progression of watch and wait?

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Anonymous's picture
Anonymous
Replies 8
Last reply 12/18/2014 - 8:45pm
Replies by: Janner, Anonymous

Can anyone help me understand the difference between Clark's level and Breslow depth?  Aren't they basically measuring the same thing, i.e. depth or thickness of lesion? Is the significance of Clark's level based on the thickness of the layers of skin in different areas of the body?  I have read that Clark's level is not really a good prognostic indicator but Breslow depth is, but if they are measuring the same thing, the thickness of the melanoma and how deeply it penetrates the skin layers, how can one be helpful and the other not?

Insight?

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Lauri England's picture
Replies 5
Last reply 12/18/2014 - 9:03am
Replies by: _Paul_, BrianP, jbronicki, BP, SABKLYN

I have been NED for 4 and a half years. On Thanksgiving I noticed a bebe size lump on left side of my neck.   I gave it a week and it doubled in size.  I went to my family doctor and she refered me right on to my oncologist.  I had a CT scan December 9th 2014 and got results back December 16th.  I have a 4 inch mass in the upper part of my left lung and a 10mm size mass right behind my liver.  Doctor right now is not sure of this is spread of Melanoma or another type of cancer.  Next week I will be going in for PET scan and diopsy to confirm.  Not sure what is going to happen next.  Very scared once again.  I beat this once and I feel in my heart I can do it again...

Don't sweat the small stuff. There are bigger fish to fry!

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ashlee12's picture
Replies 1
Last reply 12/18/2014 - 2:18am
Replies by: Janner

Hey everyone 

 

I've posted on here anot being diagnosed with melanoma about 2 months ago... I'm 22 and it wasn't even stage 0 yet which is great but I do have some questions?

 

now so far I have had 4 atypical moles removed one severe 2 mildly and 1 moderate. Now I know I have a greater risk of developing another melanoma which scares me... And now I think all my miles are weird hahha and I've kinda become obsessed with them 

 

Now some questions I have 

how likely is it that if I'm going to regular check ups that the doctor will miss something and I'll get a higher stage melanoma?

 

now I have read people get melanoma removed and they are okay and it comes back and then they have stage 4 melanoma .. How does that happen? Is it doctors fault ? 

 

 

And and last question is they removed my melanoma with surgery .. I got local anesthetic and she went in with some small pen like thing and as she was going smoke was coming from where she was working.. Is this a good way to remove moles???

 

 

 

thanks!

 

 

 

 

 

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Ashley's picture
Replies 5
Last reply 12/17/2014 - 4:10pm
Replies by: sweetaugust, BrianP, Anonymous

My dad is on a trial with PD-1 and his first set of scans showed 20% decrease in tumors.  We just got the second set of scans and it showed 9.5% more shrinkage from baseline. Could those who had positive responses to Pd-1 share how quickly it worked?  Is this bad that second scans didn't have as good of a response?

Thanks,

Ashley

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Teej's picture
Replies 4
Last reply 12/18/2014 - 12:27am
Replies by: Teej, Gene_S, O_O

Hi everyone,

My name is TJ and I'm 28 and was recently diagnosed with Stage Ib malignant melanoma on the scalp, which is typically found in men with an average age of around 60. This website has been incredibly helpful for me hearing the experiences of others. Are there any other folks out there who were dianosed with a primary on their scalp at such a young age? I would love to hear any experiences with scalp melanoma that you may have.

Thanks!

TJ

Teej

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The December twitter chat transcript featuring a Q&A with licensed oncology social workers, Dr. Sage Bolte and Drucilla Brethwaite of Life with Cancer, is now on our website! 

Check it out!

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/16/2014 - 8:36am
Replies by: _Paul_

Been experiencing pretty noticable brain fog lately. Short term memory, forgetting things, etc.

Will be seeing Dr. tomorrow and ask for brain scan, but I wonder if it might be the Ipi.

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Nadia's picture
Replies 4
Last reply 12/16/2014 - 12:00pm
Replies by: Nadia, Patina, Bubbles, BrianP

My husband is on Keytruda, he already had 7 infusions, and we are two weeks away from the second CTscan and so far, so good, he had 20% to 50% tumour shrinkage.  He had several side effects, the most common ones being fatigue, sore joints, itchy skin, rashes, and we were able to keep all of then under control without going to the hospital, with only otc drugs.  But 2 days ago he started to develop some sores on his tongue, they are very painful, no bleeding yet, and they look like raw meat. 

I was wondering if anybody else on Keytruda experienced this, and how did you manage it?  Is there any type of treatment, like a mouth rinse or ointment that we can get from a drug store to make the sores go away, or at least to make the pain manageable.

Thank you!

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Don't forget to join us TODAY, December 15 at 2:00 pm ET for a Twitter chat about handling the stress, sadness and other emotions that often accompany the holiday season for those in the melanoma community. Special guest, award-winning author and licensed oncology social worker Sage Bolte, PhD, MSW, LCSW, OSW-C, will answer questions and provide tips for coping with the holidays. Dr. Bolte is the Director of Life With Cancer, a part of Inova Health System, established to support and provide people diagnosed with cancer with resources to help them understand and cope with their emotions. Dr. Bolte will be joined by Drucilla Brethwaite, MSW, LCSW, OSW-C, who is also an Oncology Counselor with Life with Cancer. 
 
Dr. Bolte is a licensed clinical social worker who specializes in how cancer and its treatments affect people and their relationships, including the psychosocial impact. 
 
Find the MRF on Twitter at @CureMelanoma, Dr. Bolte on Twitter at @LifewithCancer and on December 15, follow #MRFChat.
 

Instructions:

Remember, you don't have to be a Twitter user to follow the conversation! Simply go to Twitter at 2pm ET and search for #MRFChat. If you refresh your screen every minute or two, you'll be able to see the conversation. The chat transcript will also be posted on the MRF website after it concludes.

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