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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Hriggenbach's picture
Replies 8
Last reply 2/9/2017 - 3:45pm

Has anyone had there femoral artery cut and repaired during there groin lymph node removal?

Mine was cut and had to be repaired. I spent 5 days in the hospital than 6 days in a nursing home, I was then sent home in a wheelchair with nerve damage from my knee to my ankle and I've lost all feeling in my thigh. I have not been able to start my cancer treatment yet because I have so many  surgical wounds. My dr said my lymph node was attached to my femoral artery and it was nicked so the vascular surgeon removed a 3 inch section and reattached my artery. They are tell me it is somewhat normal I'm in extreme pain and I'm really questioning if this is true? 

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Hi, 

Jennybaum has posted below asking for advice AND a specialist recommendation for her mum as treatment so far has not been as would be expected. Has anybody got personal recommendations please ?

Many Thanks

Deb

 

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JennyBaums's picture
Replies 5
Last reply 2/9/2017 - 11:58am

My Mom initally had malignant melanoma removed by dermatologist (2.86 deep) in September 2016, then had wide resection without sentinel node biopsy. The path report showed no evidence of melanoma in the surrounding tissue. The oncologist suggested a certain type of radiation (IMRT) as treatment however the insurance would not approve it and we have been fighting them for 4 months. it was suggested by her primary physican to get another Oncologist to help fight with the insurance, the 2nd Dr. says radiation should have never been an option and we need to get scans, blood work, and possible lymph node re-section and immunotherapy treatment given the results. I feel like my mom has fallen thru the cracks and has been waiting 4 months with no treatment or testing. At this point we are really not sure which Dr. to believe and need some advice. Also we are in Las Vegas, NV so if anyone has any refrences for good dr.'s or support groups for her I would be forever grateful! 

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Bubbles's picture
Replies 10
Last reply 2/10/2017 - 2:55pm

Been thinking of you every day!  Hope you have gotten your stent and are feeling a bit better in that regard. Fingers crossed for your getting to sign on to your trial tomorrow.  Big hugs to you and yours!  love, c 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 9:49am
Replies by: Fen

I had surgery on Tuesday to remove the melanoma and 2 lymph nodes. The lymph nodes came back benign. 

Thank you for all the support here. I have been reading along, and I am just amazed at how smart and brave you all are. 

I hope this beast never returns to me, but it is so comforting to know this group exists. My step father passed away from melanoma in 2004. I pray for all of you that they find a cure for this type and all cancers, soon.

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newmanmark's picture
Replies 10
Last reply 2/9/2017 - 9:33pm

Hello,

I have been a stage 4 patient since 2012.  In December 2016 I started on the IPI/Nivo combination and made it through 3 rounds.  I am due for my 4th round next week.  However, this week I developed a headache that persisted for 5 long days.  Yesterday I had bloodwork done and an MRI.  They confirmed that the pituitary gland is swollen.  The oncologist and endocrinologist agreed that it is worth a shot to save the pituitary with high doses of prednisone that will be tapered down every 5 days.  In the meantime I will not be receiving treatment.  

The likelihood of getting the 4th infusion if Ipi is small as they believe it will only damage the pituitary further.  The good news is that I should still be able to continue on the Nivolumab.  I haven't had a CT scan yet to determine the response to treatment.  Hopefully the tumour in my pancreas has responded.

I was wondering if anyone else has a similar response to this treatment and were you able to continue on with Nivolumab?

Thanks
Mark

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laulamb's picture
Replies 10
Last reply 2/8/2017 - 11:13pm

Ok fellow Melanoma Warriors ... I have my 3 month follow up scan tomorrow.  Had CT scan in November when an indeterminate 4 mm left lower lung pulmonary nodule was seen.  Diagnosed Stage 3a April 2016 ~ completed 4 doses of ipi at 3 mg and did 1 maintenance dose (will continue maintenance doses for a year).  Please keep me in your thoughts, send good vibes, prayers, do a dance ~ whatever it takes to make sure this hasn't grown or multiplied!! 

Peace and Good!
Laura

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 3:05pm
Replies by: D1983j, Sophietx, Janner

I've had a stage 1 melanoma last year. Everything has been fine. Today I went for my 3 month check and of course had to get a biopsy. I thought I might be lucky and not have to get anymore lol anyway she said she wasn't worried but since she's would be releasing me for 6 months now and it was the only mole I had that looked different than my other moles to remove it. She also mentioned to prevent it from being something later. The mole has always been there and it is darker than my other miles but not anywhere what I had before. It's never changed or grown. I guess I'm trying not to freak out. I'm assuming my worry should be less because of everything she said and she basically just offered it to me as more precaution but still the worry is there. Thoughts! Thanks!

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LindaSR's picture
Replies 6
Last reply 2/14/2017 - 1:12pm

My husband has been on the combination targeted therapy for nine months.  His October PET scan showed all mets gone except for two and those two significantly reduced.  His most recent PET scan last week showed a new hotspot in T9 with a score of 18.5 (in addition to 10 mets in brain found on MRI after a fall).  Our onco wants to stay on the combination and wait 3 months for another PET scan as he "does not want to give up on the targeted therapy yet."  I do not think this is wise and want to start him on combo. Ipi/Nivo immunotherapy immediately if not sooner.  If immunotherapy works it will also work on the brain mets (he is currently on day eight of wbr - i pushed for srs but onco said too many mets) Thoughts on if resistance is gradual or not and does it make sense to continue targeted therapy and wait and see.  I don't think melanoma is a wait and see cancer, it is a more aggressive cancer.  As far as having an oncologist who specializes in melanoma, I wish.  We live in BF west virginia and as it is travel 2.5 hours to Roanoke, VA to see oncologist.  No husband can no longer drive due to small seizure that occurred after his recent fall.  Any thoughts on resistance will be helpful.  I think I am going to have our onco. consult with Dr. Tarhini at UPMC at the Hillman Cancer Center for advice.  

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 1:12pm
Replies by: Anonymous

Hi, i wondered if I could possibly get some clarification. My hubby is stage 3a. There is no treatment at this stage in the UK, also no trials that he would be suitable for as the minimum requirement for eligibility seems to be above 1mm metastasis. Hubby was 0.5mm. 

I guess I just wondered if there was any other way to get something like ipi at this stage? Whether Self funding maybe through a private oncologist? Or is it not even available that way? Don't know why I'm asking really as couldn't even afford to self fund if that was a possibility probably - I expect it would cost tens of thousands. 

God I bug myself with questions!

Thank you all x 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 1:07am
Replies by: Treadlightly

 Long story made short in the early spring of 2015 I noticed a tiny pink/brown, perfectly round mole on my thigh.  several dermatologists told me it was normal. I was 34 when I noticed this mole.   In January of 2016 I asked one of them to remove the mole and they did a shave biopsy.   At this time it was about 3mm-4mm.   I had constantly been poking and prodding at it because it was bothering me since it did not look like any other moles.  It did not grow at all or change colors. 

I had to return and have margins removed.  I forget how much skin they took but I have a nice scar from the removal.  The dermatopathologist told me this was an atypical spitz nevus.  He said that the margins were clear and that the shave biopsy got it all.

I had not thought about the mole until I saw an article about a lady who had much larger mole removed, I believe 9-10 mm,  that was changing.  Her initial diagnosis was an atypical spitz nevus but then a short time later she had a swollen lymph node and it was diagnosed as a spitzoid melanoma by a specialist.  The article explained how sometimes they screw up the diagnosis of an atypical spitz and melanoma. 

I am trying to put my mind at ease somewhat.  I noticed this in the spring of 2015 and it is almost two years later.  If mine was a melanoma would something else have popped up ?  Like a swollen lymph node etc ?  Nothing has changes on my scar and I am perfectly healthy.  

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/8/2017 - 1:29pm
Replies by: AshleyS, Anonymous

I'm not sure what to expect from posting this, but felt compelled to share what I'm going through if only for the cathartic act of writing it down somewhere.

This past December, at 6 weeks pregnant, I went to the dermatologist to have a small pink spot (what I thought was a pimple or ingrown hair) looked at.  The derm suggested it may be cancerous, but that if it were, it would not be melanoma given its appearance.  None the less, he attempted to remove the whole thing.

Five and a half weeks later (yes, that is how long the lab results took), I got a call from him, saying it was cancer.  I asked what kind, and nearly dropped the phone when he said melanoma.  Apparently, I am one of those rare people with non-pigmented melanoma.

I went in that day to discuss the pathology report.  Breslow depth of 0.8mm, clark level II-III, no ulceration, no mitosis.  T1a, based on the available information.  They weren't sure, however, if they had truly removed all of it with the initial biopsy.

He sent me on my way with his recommendation for the WLE, as well as an ultrasound of the nearby lymph nodes in my groin.

Terrified, I did the ultrasound - it came back clear.  Then, the WLE.  I did not have the SLNB at the time, as it was not recommended based on my initial staging (but now I'm wondering if I should have, especially with the pregnancy!)

Now, we are still waiting for the results of the WLE report.  I am 15 weeks pregnant, and reading about how much more dangerous this stuff can be while pregnant (though admittedly, there seems to be a great deal of disagreement).

I am in shock, and terrified for myself and this poor thing growing inside me.  I know that T1a should be uplifting, but we still don't have the full lab results, and I've read that an ultrasound can have a 40% false negative rate. 

How do you live with the daily fear that this is spreading and they simply haven't seen it yet?  How do you bring a child into this world, when you aren't sure if you'll be around to take care of the little one?  How do ensure you catch it early if it does spread to the nodes, so you don't wake up one day with tumors all over when you were supposedly T1a? 

I feel so lost and angry and scared.  This is my first pregnancy, and it is nothing like what I imagined. 


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Kristenp's picture
Replies 6
Last reply 2/9/2017 - 6:47pm
Replies by: jennunicorn, Kristenp

My doctor did a shave biopsy of the top of my  right ear and it turned out to be melanoma.  She referred me to a dermatologist in Philadelphia to have it removed (I go Monday) and she sent me for blood work and a chest X-ray.  She didn't talk at all about seeing an oncologist, and I was so shocked by the diagnosis that I didn't question her.  I'm waiting until morning to call the office and ask some questions.  In the meantime, maybe someone here can help me out.  The pathology says the Breslow is at least 1.1, there are 4 mitosis/mm2, it has nevoid features, and is at least a T2A.  I'm completely freaked out, and the more I google things the more upset I get.

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Jenine's picture
Replies 1
Last reply 2/7/2017 - 8:58pm
Replies by: Bubbles

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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Jenine's picture
Replies 1
Last reply 2/8/2017 - 11:34pm
Replies by: _Paul_

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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