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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Hi,
My mother-in-law who has stage 4 breast cancer (bones, spinal cord & brain lining) received a LETTER saying he would no longer see her. We all have no idea why!!! I've been on this forum for a really long time so I thought I would reach out to you all. Any thoughts why an oncologist could/would do this.
Thank you.

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Hi,

I just wanted to ask if anyone else can share their recovery experience after a complete lymph node dissection of a full side of their neck?

It has been a little over 2 weeks since mine (44 lymph nodes, some skeletal muscle, and a plum-sized submandibular gland). I start physical therapy tomorrow for my left shoulder and neck. I will also start seeing a speech therapist but that hasn't been setup yet (probably next week).

Here is my big question: The left side of my tongue is limp (when I curl my tongue only the right side curls, my tongue can touch my back teeth on the right side but only as far back as the canine tooth on my left side). Also, my left lower lip is limp but this is very subtle because the middle and edge of the lip are responding normally. Are these effects temporary?

Reading about nerve issues regarding the tongue it sounds like nerves do heal themselves quite well. So hopefully it is just a matter of giving my tongue and lip some more time to heal.

But any advice of nerve healing and/or physical therapy exercises for the neck would be greatly appreciated.

I start on Ipi in a week, so in many ways the nerve healing and physical therapy are good for me to focus on instead of worrying too much regarding Ipi.

Thanks!

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AB's picture
Replies 3
Last reply 2/26/2017 - 11:06pm
Replies by: Mark_DC, tschmith

Anyone feel their doctor is interested in them versus just what they can write about the success and or failure they have had with Patient X? I need a doctor that will give me an idea of my real options, side effects and estimated timeline for the mets to spread to my brain, chest, abdomen & pelvis. Thanks again

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AB's picture
Replies 6
Last reply 2/26/2017 - 11:11pm
Replies by: Mark_DC, tschmith, AB, BrianP

Help! I used to exercise 2.5 hrs a day, now can't get out of bed most days and 30 min cycle puts me back in bed for several hours. I'm exhausted and my head constantly hurts. Any suggestions? My 14 yo twin boys are scared to be alone with me. 

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casagrayson's picture
Replies 0

Has anyone heard from Juan or Stacey?

Strength and Courage,

Susan

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/26/2017 - 5:28pm
Replies by: Janner, AliCat61, Anonymous

Do you feel that that 'D' for diameter isn't useful for melanoma diagnosis?!
Just wondering, what was the diameter of your melanoma at the time of diagnosis? Was your mole growing in diameter or stayed the same size?

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MichelleRHG's picture
Replies 3
Last reply 2/25/2017 - 8:47pm

I just started adjuvant ipi and have read various reports about Curcumin while on ipi. You guys are the experts...do you know if its ok?

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/26/2017 - 4:17am
Replies by: UBContributor, jennunicorn, Anonymous

If melanoma was on the lower lig which lymph nodes it will usually transmit for? Is it in groin area? Or it could be behind the knee? and what they usually feel like?

Thankyou for reading

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CHD's picture
Replies 3
Last reply 2/25/2017 - 10:58am
Replies by: CHD, Bubbles, UBContributor

Just wondering, got my labs back yesterday and melanoma doc said all OK but platelets were on the high (438).  Said just something to be watched and will repeat labs in a few months.  I figure if it was worrisome, she would not be willing to wait a few months to repeat.  But knowing there CAN be a link between high platelets and cancer recurrence, decided to come here and ask how common it is here to have elevated platelets as part of a melanoma diagnosis.

Any input welcome.

I am one of the mucosal melanoma survivors, 3, almost 4 years out from initial diagnosis, clear PET CT last year.  Try not to worry where there is no reason.  Still whenever anything unusual happens, my mind does race.

Cheri

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Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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Anonymous's picture
Replies 4
Last reply 2/25/2017 - 1:35am
Replies by: Anonymous, Polymath, stevenallenschwartz

Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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casagrayson's picture
Replies 1
Last reply 2/24/2017 - 1:36pm
Replies by: Anonymous

I posted a link to a picture of a very ugly lesion on my husband's back in January.  
http://s102.photobucket.com/user/casagrayson/media/fullsizeoutput_328c.j...

He went to the dermatologist on the 9th and had it biopsied.  Against my wishes, doc did a shave biopsy, saying that he wanted to remove all of the lesion above the skin level.  Doc noted to rule out BCC/SCC on the visit report.  

In-house dermathologist made the following report:

Gross description:
Received in formalin is a 1.2 x1.2 x 0.5 cm tan-gray fragment of skin.  Bisected and submitted in toto.

Pathologic Diagnosis:
Invasive Squamous Cell Carcinoma, Keratoacanthoma type

We went back yesterday for a Mohs procedure.  Here is the visit report:


Indications for surgery:  Poorly defined margins, aggressive pathology

Final defect measured 2.0cm x 1.5cm and extended to the fat.  Scarring was present at this stage.

 

So, here's my question.  Husband has had two prior melanomas.  There are instances in the literature of nodular melanomas being misdiagnosed as SCC, Karatoacanthoma.  Should this specimen have been stained for S-100?  Should someone have mentioned checking lymph nodes (even if it is SCC)?  Am I being too paranoid here?  The depth of this lesion really worries me.  

Strength and Courage,

Susan

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marta010's picture
Replies 6
Last reply 2/24/2017 - 11:28pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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Dear MPIP Community:

FDA's Oncologic Drugs Advisory Committee (ODAC) will meet very soon to discuss an investigational new melanoma drug. This meeting will include an opportunity for NRAS mutant patients (and caregivers of those patients) to speak to the committee about the importance of new treatment options in metastatic melanoma. The FDA also allows letters to be written. We encourage you to get involved the best way you can.

If either of these opportunities would be of interest to you, please email me directly at education@melanoma.org. Once the FDA provides a date for the meeting, we'll know more details on both the meeting and the letter writing opportunity, so stay tuned.

Thank you,

Shelby - MRF

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Hriggenbach's picture
Replies 7
Last reply 2/23/2017 - 11:30pm
Replies by: Anonymous, Hriggenbach, jennunicorn, Ed Williams, Hukill

I'm 3c and going to be starting ipi 3/16. My dr indicated certain side effects tend to lead better outcome of course I didn't ask her what those were and I can't find anything stating that on the internet I was hoping someone might know 

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