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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KMick's picture
Replies 2
Last reply 10/31/2014 - 12:07am
Replies by: KMick, liberty04281

Does anyone remember "Lisa13" and/or know what happened to her?  I followed her posts when I was first diagnoses and then she disappeared.  Someone in the chat room thought that she may of passed but wasn't sure.  Just wondering.

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Steve2142's picture
Replies 8
Last reply 10/30/2014 - 11:19pm
Replies by: paul Lyons, kalisama, Anonymous, MattF, Mat, Bubbles, Steve2142

I met with my oncologist today after my pet scan and he advised me that my melanoma had "exploded" in a short time and has spread to my lungs, liver, and other cutaneous sites.  The number of nodules was innumberable.  I am being tested for the BRAF gene and if I have the mutation, he is suggesting a combination of Tafinlar and Mekinist.  It would be great to hear if anyone has undergone a similar treatment regiment and what their experiences have been and what side effects they experienced.  Thank you.

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DMU's picture
Replies 4
Last reply 10/30/2014 - 5:02pm
Replies by: DMU, DZnDef, Emcjones1

Went to Dr. For follow-up after surgery. Said incision was healing fine. Pathology came back clear. All other tests were fine. Said I was ok, but  must be checked every  6 months, for melanoma can show up again at anytime.  So I felt good and hope to be cancer free for a long time.

:)

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odonoghue80's picture
Replies 19
Last reply 10/30/2014 - 4:35pm

Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain. 

I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great. 

Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor - about  I'm just afraid of what happens next. 

Thanks,

Shane 

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Kdw2012's picture
Replies 11
Last reply 10/30/2014 - 11:35am

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you

Kim

 

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Owl's picture
Replies 7
Last reply 10/30/2014 - 10:48am

Dear all,

I just want to share some good news with you and give some hope to others.

My husband is in EAP Pembrolizumab (Europe) and just had his 12 week scans. The result is more than we hoped, everything (2 lymph mets in Abdomen and two huge tumor as well as smaller ones in neck/face) is almost gone. The scan report is written very technically, even the conclusion, but the doctors assured us that only one area is still visible, could be tumor rest or scar caused by neck dissection.

He is doing really well and has no side effects. The first weeks though he was not feeling good. He had a huge swelling in tumor areas, bad pain, could not sleep...he was on strong pain meds for about 4 weeks. It slowly improved and is gone since week 6 or 7. We could also see the tumors shrinking. This was the first time I was happy that they were visible. Even his facial nerve is slowly recovering.

It seems that Pembro / Keytruda is his magic potion and I hope it will be for many others.

All the best, Jenny

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Ginger8888's picture
Replies 6
Last reply 10/29/2014 - 10:43pm
Replies by: Ginger8888, rick1981, BrianP

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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FayFighter's picture
Replies 9
Last reply 10/29/2014 - 8:58pm

I have come to this site for hope countless times. Hoping this post helps someone like you all have helped me. A shout out to Celeste who originally planted the seed regarding this trial.

CT scan today (8 wks out) show 30% reduction in liver lesions. 

Thank you.

Angela

 

Recap re my husbands diagnosis:

july 2010 melanocytic nevi Lower left calf excised (later in 2014 reread by mskcc as melanoma in situ)
 
derm exams/6 mos
 
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
 
July 2013 bump in groin. Biopsy shows it's melanoma.
 
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
 
oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.
 
radiation of lymph basin nov/dec
 
january 2014 tumor profile NRAS pos BRAF neg
 
march 2013 finally tapering of prednisone
 
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
 
may 21 start anti pd1 and KIR trial. 
 
July 2014 stomach lesion 6cm/liver lesions detected
 
july 20 surgery to remove stomach lesion
 
aug 20 start mek162/cdk4 trial liver lesions have shown progression since july
 
todays scans: liver lesions reduced by 30 percent
 
 

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HI Everyone

I hope some of you or all of you can come to chat tonight  Woudl love to meet you  Big Hugs,

Love and Light

Carole K

PS I am hoping some others from two other MM groups will come join us 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/29/2014 - 3:56pm
Replies by: democat, Emcjones1

My original path report listed Mitotic rate of invasive component : 17 per square mm. My oncologist has open notes. Every visit she list all my findings Clark level etc but every time she write 70 mitosis per mm2. What or is there a difference? Thank you , hope this make sense.

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kalisama's picture
Replies 2
Last reply 10/29/2014 - 11:26am
Replies by: kalisama, Bubbles

Has anyone seen any specific data on this yet? 

Thank you in advance,
kali

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Lisa - Aust's picture
Replies 1
Last reply 10/29/2014 - 9:37am
Replies by: Owl

Hi Everyone,

Just looking for some info/experiences/evidence!

My husband Craig has been on MK-3475 for around a year now and has luckily had a complete response.

His oncologist has raised the possibility of him coming off the drug, monitoring and re-introducing if he has a reoccurance.

At this stage it is just an option he has offered (with permission from the drug company), giving us some anecdotal evidence of a few people coming off and continuing to be stable/remain clear (He mentioned mainly people who have come off due to side effects etc, so the discovery of the ongoing response has actually been incidental). Theoretically he is thinking that perhaps the drug has 'done its job' - but obviously it hasnt been around long enough to really make a statement like that.

Does anyone know of any evidence out there/own experiences etc regarding this? 

If we went ahead, I think my hubby will be the first person in our location (Perth, Australia) to go down this path. At this stage, I am not sure if we want him being the guinea pig!

Thanks,

Lisa

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sharon0803's picture
Replies 1
Last reply 10/29/2014 - 9:16am
Replies by: Anonymous

Hi All,  I have not been on for a while.  I do need some help please; I am looking for a Melanoma Dermatologist in the NW Chicagoland area, even the near suburbs.  

 

Any suggestions would be greatly appreciated!

 

My onc has been doing the screening , but I believe I should be seeing a dermatologist for routine checks.

 

Thanks,

 

Sharon

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/29/2014 - 2:43am

Can anyone give me some examples of what a recurrnce located in your WLE would look like.   I had a WLE at the end of June and recently noticed a small bump emerge in the scar.  The bump is red so it makes it hard to tell if it just a normal part of the scaring process.

My melanoma dx has made me a constant worrier.

 

Thanks

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/28/2014 - 10:01pm
Replies by: Emcjones1, Bubbles, Anonymous

I just did my second CTC which measures how much melanoma is in the blood stream. The first one i did in June came back at .75 which according to the doctor meant that I had a very small amount of melanoma in blood stream and a very low risk of distant spread.

The second one however has increased allmost 6 fold to 4.25 whcih now puts me at grave risk of distant spread or recurrence. Now I dont know what to do and I am really gutted.

I am currently stage 3 but it seems like things are getting worse quickly although i still feel really good. Apparently the test which is the Maintrac CTC test  has a very good predictive value and is usually six months ahead of what happens.

I dont know what therapies I should try or what i can do now. They only thing they are offering is chemo or interferon which I wont do. 

 

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