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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Rita and Charles's picture
Replies 8
Last reply 7/23/2015 - 2:15pm

Hello All - my husband Charles is on Day 4 of the BRAF combo Debrafenib + MEK......so far so good.  He is tired but the stress of getting into a new routine with taking the drug/eating and a little waiting for the "side effect shoe to drop" could also be a cause of fatigue.  

For those that took this combo........how long after you started it did you start to see, if any, side effects?? Thanks - here is hoping that he is part of the happy camp with great success and little toxicity.

Hope everyone is doing well, 

Rita

Rita

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stars's picture
Replies 2
Last reply 7/20/2015 - 2:44am
Replies by: stars, Janner

Hi Janner

I've been looking at the boards for a while, ever since I was first diagnosed with stage 0 melanoma in Jan this year after a whole-body skin check.

Unfortunately, I've since been diagnosed with two more - both stage 1, still waiting on one WLE (other WLE done and pathology all clear).

So that puts me in the three melanoma club... all within 6 months... I feel like I've been struck by lightning then hit by a bus..

I'm 43 and want to bleat about being too young for all of this, but looking at the boards there are plenty younger than me here! I also live in Australia, in the melanoma capital of the world.

My question for you (or perhaps questions, if you have time):

what is your frequency of full skin check, and with which specialist? To date I have only been to a skin cancer clinic - this is a clinic run by GPs, not derms or any other specialists. Basically, these GPs decide to 'specialise' in skin cancer and do lots of dermoscopy courses. I have been seeing them for six months but have now made an appt with a derm as I think I might have outgrown GP care at this stage GP = general practitioner.

what is your advice re self monitoring - I have basically found all of my melanomas, all looked different to each other and all were at first regarded as nothing at all by both my family GP and (with the exception of one melanoma) even the skin cancer clinic - it's only because I insisted that my last two melanomas were biopsied, one even with a shave (!) which makes me angry as even I as a first time melanoma pt know how inadvisable a shave biopsy is for lesions that are ALL about depth. I can monitor the visible ones... but what about my back etc?

what is your advice for obtaining peace of mind or as close to it as possible? I feel like every (frequent) skin check I go to results in biopsy, stress, WLE....

I don't have any family history of melanoma... what are your thoughts on gene testing in my situation?

Hope to hear from you, and anyone else who would care to respond

Stars

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/20/2015 - 10:10am
Replies by: Anonymous, stars, Janner

Originally stage 2b two years ago.

Recently melanoma found in scar tissue at excision site.

PET scan done and came back no recurrent disease, no nodal involvment , no distant disease.

Now does that mean I have moved to stage 3 or am i still stage 2b?

And does that make my prognosis worse?

To complicate matters the scar tissue is very thick and near nerves and blood vessels so I am wondering if they can get it all anyway when they do the excision. And if they cant what would be the usual procedure to get the remaining unresectable disease.

 

 

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mizmena's picture
Replies 5
Last reply 7/21/2015 - 12:34pm

Started this trial yesterday...just curious if anyone else is participating and what the side effects are? I have a very swollen throat today and its got me a little concerned. I didnt think I would have any effects after the first treatment. Headahce, naseua and this sore throat are bothering me. Finally got rid of the headache and nasuea but not the sore throat...any input on anyone else in this trial i would greatly appreciate.

 

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Ginger8888's picture
Replies 8
Last reply 8/3/2015 - 2:01pm

I did my last treatment of Yervoy Aug 13th 2014 and so far all scans have been NED..Today i got my new scans and am stll NED..Whoot!!!

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1derdog's picture
Replies 4
Last reply 7/18/2015 - 10:18pm

My husband had three doses of Keytruda & the latest scan showed an increase in the tumor in his pancreas.  The doctor now wants him to start Yervoy & Keytruda as soon as possible.   Has anyone else moved hat quickly off of Keytruda to the combo treatment? I was under the impression that Keytruda needed time to work.  The doctor said if the combo doesn't work then he'll give my husband targeted radiation.  In hopes of some shrinkage so they can resect the tumor safely.  

Can anyone tell me if they've had any similar e perience with this sequence?

thank you

wife (caregiver)

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/21/2015 - 2:07pm
Replies by: tschmith, stars, dfeng

I was diagnosed and succefully treated stage 1 melanoma in 1995 at the age of 15.  I have never had a reoccurance or in 20 years.  Now I have this new "spot" that appeared shortly after my last derm appointment.  It has no color just a hard little bump on my arm. 

 

Should I get this looked at before my yearly spot check???

 

I'm feeling a little paranoid because it looks nothing like any picture I have seen for Melanoma.

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braunerk's picture
Replies 1
Last reply 7/17/2015 - 3:37pm
Replies by: Anonymous

I am currently being seen at the University of Arizona Cancer Center. Banner Health bought them and all 3 of the melanoma specialists have left or are leaving. I was receiving great care but now the only person I can see is a nurse practitioner or a oncologist that is trained in urology obiviously not close. If anyone can suggest another doctor in Arizona or with 8 hrs of Tucson I am interested. I am currently stage 4 and have had ippi and currently on Keytruda and have done radiation on 2 mets in my lungs

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I am currently being seen at the University of Arizona Cancer Center. Banner Health bought them and all 3 of the melanoma specialists have left or are leaving. I was receiving great care but now the only person I can see is a nurse practitioner or a oncologist that is trained in urology obiviously not close. If anyone can suggest another doctor in Arizona or with 8 hrs of Tucson I am interested. I am currently stage 4 and have had ippi and currently on Keytruda and have done radiation on 2 mets in my lungs

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I am currently being treated at the Arizona Cancer Center associated with the University of Arizona. Banner bought them and now all of the melanoma specialists have left or are leaving.  I was receving great care but that is going away.

The only option there is to be treated by an oncologist trained in another form of cancer. If anyone can suggest a doctor in AZ that is a melanoma specialist please let me know. I will have to travel but want to keep it to 8 hrs or less away from Tucson.  I am currently stage 4 and have had ippi and am currently on Keytruda and have done radiation on 2 of my lung mets. I am hoping to try t-vec when it comes out.

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cbeckner98's picture
Replies 4
Last reply 7/22/2015 - 12:29am
Replies by: _Paul_, dfeng, Anonymous, tschmith

Hi all,

I've posted a few times - we're up in Seattle and my Dad has brain mets and one tumor in his lungs.  He's also BRAF negative and so we've seen Dr. Thompson at SCCA twice in order to help us chart a treatment plan.  In any case, last week Dr. Thompson recommended my Dad start Keytruda/Pembro as his first-line treatment (now that his whole brain radiation is complete).  It did take a week of pushing but his insurance, Regence Medicare Advantage, did approve him to go directly to pembro without going on ipi first.  Hurray!  Wanted to share that news with others out there!!!  Our local cancer center is actually administering pembro (their first time ever to do so) and I had the pharmacist look up pembro in the NCCN compendium in order to support our claim as well as the doctor had to advocate strongly too.  Now, we're really hoping that this drug works...  Saying lots of prayers!!!

Also, we did ask Dr. Thompson about the ipi/nivo combo and SCCA's track record with it (for background, SCCA is Seattle Cancer Care Alliance which includes the UW and Hutch).  He said that when they initially heard about it, they were very excited and switched a number of patients to that protocol.  Many got very, very sick, however, and so they have actually pulled back on using that as a default treatment option for Stage 4.  He said that it overtaxed the entire staff of the melanoma clinic and that they are only starting to dip their toes back into prescribing it for select patients (and especially when other treatments haven't worked).  Found that interesting and thought it was worth sharing. 

All the best to everyone out there fighting this disease!  I am so appreciative for the advice and genuine support on this message board!!!

Carrie

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Anonymous's picture
Anonymous
Replies 14
Last reply 7/20/2015 - 9:07am

Just leaving from moffitt. Things are really not going my way. So since i had a extra nodal extension in the path report from node dissection and have not had radiation they are not letting me in the trial. It would take 4 weeks for radiation treatment and another 4 weeks after treatment to get in. Two other people are in line for the spot and they obviously cant hold it for me. In another kick in the ass the checkmate 238 trial will exclude me also because radiation is the standard of care for a path report like mine and that trial does not allow any radiation. Not once have i had a doctor tell me this was going to be a factor. My home doctor actually told me he wouldn't do radiation unless we didn't have a choice. It doesn't work very well and will most certainly give me lymphedema. Dr abdul said well the drugs will be available if you progress to stage 4...then i just about lost it in the exam room. Why the hell did she think i was there. I told her the whole point of me coming across the country was to find a treatment that may stop this before i progress. I feel like i got kicked in the chest. Also threw 800.00 out the window also. But who cares about that just icing on the cake...Totally crushed right now and not sure what my next move is.

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zhanggar's picture
Replies 16
Last reply 7/20/2015 - 3:24pm

I just got a shave biopsy for a suspicious mole a few days ago and I am waiting to hear the results. I just spotted the mole less than a week ago It was a flat black mole on my thigh and the diamater was just smaller than a pencil eraser. I have not experienced any symptoms such as bleeding, itching, etc. and don't have the risk factors for melanoma.  The doctor said it probably was not melanoma in the later stages because of the flatness and he did not see any part of the mole was remaining after but cannot be sure. 

My question is if the melanoma already invaded deeper in the skin, shouldn't there be a dark spot on the wound or does it not matter? 

Here is a picture of the wound a day after

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Beezer's picture
Replies 5
Last reply 7/17/2015 - 5:21am
Replies by: Beezer, arthurjedi007

My poor sister is not doing so well right now, she was hospitalised a few days ago as she lost the use of her legs and arms, she had three doses of ipi and has just had one infusion of keytruda. She also had whole brain radiation done in February but we thought she had recovered from the mobility issues with the WBR but she seems to have relapsed again, we are so distraught right now, we not sure it's the keytruda which was started three weeks ago or is it after last ipi infusion or whether our poor warrior is losing her battle. She is due to have a second infusion of keytruda next week so we are worried they will not give it to her, please can anyone share any insights at all 

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TraceyN's picture
Replies 10
Last reply 7/19/2015 - 10:26pm

I am really concerned I am having so many issues right now, and I can't seem to get anyone to take me seriously??!!!!!!  I'm getting really frustrated.  I was referred to Nashville Skin & Cancer here in clarksville, and my doctor did'nt even do a proper skin check!!!!!  Did'nt look in my hair, my feet, privates, etc..., now I have sores all over my head that are scabbing and bleeding, I had a mole on my chest pop up and turn black, and started scabbing, and itching, and today came off.  I immediately put it in a ziploc bag, and ran to the skin and cancer center, and was told it's probably nothing to worry about, and threw my tissue in the trash???!!!!!!!!!!  Is anyone else having problems like this??!!!!  I tried calling Dr. Kelly at Vanderbilt, but he's gone now along with his nurse.  I am so worried because it was so scary when I was diagnosed in 2000, I had 4 surgeries in 5 months, and my right groin lymphnodes were removed, as 3 tested positive.  I was put on the cancervax clinical trial for 5 yrs, and it was closed proven not to be successful..  Uggghhh, I'm worn out, because I know how quickly this can get away from you if not being aggressive.  Any advice or suggestions I would greatly appreciate.  Thank You.

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