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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Kmiles's picture
Replies 4
Last reply 2/17/2015 - 10:08am

My diagnosis was 10/29, WLE 11/20 with 3 positive nodes.  12/29 complete node dissection.  I have yet to have any testing includes even just a chest X-ray. Is that normal? At what point she I expect one.  

 

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Kmiles's picture
Replies 1
Last reply 2/16/2015 - 12:08am
Replies by: AnitaLoree

My diagnosis was 10/29, WLE 11/20 with 3 positive nodes.  12/29 complete node dissection.  I have yet to have any testing includes even just a chest X-ray. Is that normal? At what point she I expect one.  

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clthomas2131's picture
Replies 4
Last reply 2/13/2015 - 12:11pm

Just recently diagnosed on  1/26 with Stage 4 melanoma. According to PET scan it is in my neck lympnodes and a small spot in 1 lung.  Found out today that I do have a BRAF mution of L597P which from what I was told is extremely rare... 

First oncologist said he wants to do neck surgery and start me on pill therapy.

Went to second opinion today at Cancer Center of Excellence(UAB) and met with an oncologist that specializes in melanoma today. He is sending me for a head MRI and a ENT visit to rule out any other tumors but suggests due to the BRAF mutation most of current treatments would not do me any good because of the type of mutation I have. His suggestion is no surgery at first, but to start an IV treatment due to my age and health and assuming nothing going on in my head he suggested we could go into a trial and be aggressive and do Yervoy/Interferon ( aggressive) or Yervoy/Avastin( middle of the road) or just Yervoy.  He said if I had surgery first with recovery time it would put off treatment and I could have more tumors pop up while we are waiting...  

 

Advise? Suggestions? Questions we should of asked? 

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Wader's picture
Replies 5
Last reply 2/17/2015 - 9:38am
Replies by: _Paul_, Wader, Janner

I'd like to keep track of those moles so if they change that can be caught early. First I tried to take pictures with my cellphone. However, it is really difficult to keep the lighting consistent each time. Then I found this app, Doctor Mole.

http://www.doctormole.com/

I just tried the free version. To get the full analysis it requires to pay. Compared to the treatment we've paid this app costs nothing. However, I'd like to know how it works before I swipe my credit card. Can anyone share some experience? Or any advice for keeping track of moles? Thanks so much!

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Has anyone else diagnosed as Stage IV with brain mets had flushed skin with prolonged blanching? We had our four week post SRS check yesterday and the Radiation Oncologist took an interest in it. He is the one who had prescribed Dexamethasone for brain swelling  after the SRS, so had it been due to the steroids I think he would have mentioned it. I've asked my husband to check with his Primary Onc but he's hesitant. We start Yervoy on Monday. Thoughts? Thank you. 

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RGal's picture
Replies 2
Last reply 2/14/2015 - 11:01pm
Replies by: ncdaniel

My father's melanoma spread to his lungs, multiple lung nodules that are now causing him shortness of breath quite easily.   He just started a clinical trial of an inhibitor and and anti pd-1 drug.  I'm worried about his lungs failing before the immunotherapy starts to (hopefully) do it's job.

Has anyone had a similar diagnosis?  

 

Thank you!

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AshleyS's picture
Replies 5
Last reply 2/13/2015 - 2:41pm

Alright. I'm extremely frustrated. I've shared my story before, so I won't go into all the details. Here's the "need to know":

 
- Stage 1 diagnosis in August 2013 at age 29 following daughter's birth. 1.95 mm lesion on left calf ; skin graft. Sentinel node biopsy/PET showed nothing. 
 
- 1 new melanoma on back in November 2013; .45 mm.
 
- Found enlarged lymph node in July 2014 while 20 weeks pregnant. Biopsy showed metastatic melanoma. Lymphadenectomy at Mayo Clinic, MN; 15 nodes, 3 metastatic. Removed No PET because of pregnancy, but MRIs showed no other signs. 
 
- PET in December 2014. Metastatic evidence on liver, right shoulder blade, lower lumbar, and left hip. Head MRI = clear. 50 gene panel = NRAS (61). 
 
- Mayo came up with chemo (Taxol/Paraplatin) as treatment. Their justification was to slow growth before Yervoy. NP in charge of my case does specialize in melanoma but is a NP. 
 
- I contacted MD Anderson. Got referral approved. However, they said they didn't want me down there until 4 weeks after chemo was completed. 
 
- PET today at Mayo. New liver lesions, but no growth on other liver lesions. One new tumor on chest and slight growth to other tumors. NP is switching me to Yervoy. Keytruda next if ipi isn't successful. 
 
What do you all think? Would you continue with Mayo? Should I push to go to Houston (I live in North Dakota)? Mayo says Houston probably won't take me unless I start a trial...do you think this is true? 
 
I'm not in the medical field and feel so ignorant about all this. Any advice is appreciated!!!!

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staylor's picture
Replies 3
Last reply 2/12/2015 - 12:48pm

I am 3 weeks post op from a melanoma removal.  The area is just below my knee.  The skin graft did not take.  How long will it take this area to look normal and heal?

Suzanne

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Anonymous's picture
Replies 3
Last reply 2/19/2015 - 8:31pm

Hello.  My wife was just diagnosed with a nodule on her lung from the CAT scan (October had a clean PET scan, and surgery for full lymph node dissection in November).  The dcotors are going to do a biopsy of the nodule next week but we are assuming it is melanoma until we hear otherwise (versus an infection, inflammation).  She has spoken to the melanoma oncologist and has agreed to a clinical trial with an Ipi (3mg) and Nivo (1mg) combination for 12 weeks, concurrent doses given every 3 weeks for 4 cycles.  After the 12 weeks she would get Nivo (3mg) every 2 weeks for some time.  She is BRAF negative.

Does anyone have any advice with this?  I know of the multiple and significant symptoms but she seems determined to move forward with this treatment and try to get through the 12 weeks program combo program.  She has discussed medicines to manage the side effects with the doctors.  I have heard that Nivo (or Keytruda) is more manageable in terms of side effects versus Ipi if she is able to get past the 12 weeks concurrent regimen.

Thanks,

Michael1212

 

 

 

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ashlee12's picture
Replies 2
Last reply 2/11/2015 - 7:58am
Replies by: ashlee12, Janner

So today was my follow up appointment from whe. I was diagnosed with melanoma in situ.. So I had my check and he said everything looked good... Well now I've been moved to appointments every year... Which suprised me .. I know if I see something weird I'll go in but idk is that standard??? 

 

 

I have have an anxiety disorder and I'm nervous about a new melanoma pooping up .... Any advice or anything you know what new melanomas???

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Jen P's picture
Replies 5
Last reply 2/10/2015 - 11:05pm

My husband (Stage IV) has been on the taf/mek combo for a couple months. We just got scans yesterday and while the tumors shrunk dramatically, two "new" small tumors showed up on this scan in addition to one small one on hip and arm.  Has anyone had a "mixed" response on the combo?  Our onc thinks maybe these new tumors showed up in the 2.5 weeks after the first scan and before we started the combo.  Thanks!

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clthomas2131's picture
Replies 7
Last reply 2/11/2015 - 3:03pm

I have been lurking on this board for a couple weeks now and finally decided to post... I was diagnosed on 1/26 by my ENT of having stage 4 metastatic melanoma over the phone no less... Back before Christmas I was hit with a stomach bug that went around our whole house. Over the course of the weekend I took it easy and then got up to head to work on Monday and found a swollen lympnode in my neck.. 3 visits to different doctors over the next couple weeks for antibiotics and steroids and was told if it is there when you get back from vacation see an ENT. No one seemed concerned at all, no other symptoms. Even at ENT she did the biopsy and with no symptoms she was thinking infection, something minor. Well after she gave me the news I had my first visit to an Oncolgist and went in for a PET scan. According to the oncolgist my nodes in my neck lit up as did a real small spot in 1 lung but said it may be nothing at all. He wanted to send me for surgery on my neck before we discussed other options. I decided to get a second opinion at a Cancer Clinic which I will have this Thursday... With a wife and 2 young girls at home I am lost on what to do...All I have to go on is "google" and frankly that is scary and depressing. I am the one who supports the house and carries the ins so we are lost..  Any advice? Questions we should ask? Anything postive to go on?

 

Thanks!

 

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yazziemac's picture
Replies 3
Last reply 2/11/2015 - 8:59am
Replies by: yazziemac, Jubes, joelcairo

Hi everyone

I am wondering what Stage 4 people's experience has been in qualifying for travel insurance?  My husband, Pete, has been inquiring with our insurance carrier but it has been hard for him to get straight answers.  How do others cope with this situation?  The idea of never being able to fly out of the county together again is very hard for both of us to accept.  Especially because we live in Canada, which is very cold in the winter!  Any advice would be most helpful.

Thanks in advance,

Yasmin

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rick1981's picture
Replies 17
Last reply 2/26/2015 - 4:34pm

Hello,

my wife was diagnosed with stage IV in June and did exceptionally well on BRAF/MEK until late November (PET negative, partial response) and then developed resistance. New mets in her hip area (3) and later also in her brain (small but 12pcs). Pembro was started on 3/12 and she had whole brain radiation and hip radiation and she improved physically and so did her blood values. She did have multiple epileptic attacks since mid Jan but always received until last weekend.

She has severe speech issues now and a New MRI revealed several mets have grown significantly and that brain sections are shifting.

Too many large mets to operate, too soon after WBR for Gamma Knife. There is some inflammation so that could be a sign of the pembro.

that seems to be the only option left wait pray and see if the Pembro (#4 last week) can act quickly...

any other advice? Reality starts to set in its just so tough as we thought we had plans B and Cs...

rick 

 

 

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