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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Owl's picture
Replies 4
Last reply 6/28/2013 - 6:42am

Hello everybody,

just wanted to share some good news with you. My husband has its 6 months on Zelboraf tomorrow and scans from last week show that it is still working. Tumors are smaller or gone. We are so thankful, it is very precious and we hope that it will continue. He feels very good most of the time, side effects come and go, but are manageable.

All the best,

Jenny

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Sasha's picture
Replies 1
Last reply 6/18/2013 - 10:18am
Replies by: hbecker

Hi All,

 

I haven't been to this Board in years!  I'm 39 years old and have a history of two melanoma insitus and one melanoma Stage 1a.  I have been cancer free for about ten years now.  I had a new place on my back just below my neck and wasn't sure what it was.  It was a colorless bump about the size of a pencil eraser on my skin that just recently started bleeding a little and became very tender!  I saw my doctor last Wednesday and she told me at the time she thought it was another melanoma.  She examined me and I had a couple of swollen lymph nodes in my neck.  She asked if I had been sick recently and I told her but I have been running a fever of around 101.5.

Anyway....the biopsy came back as "Invasive, well-differentiated, squamous cell carcinoma; with features of Keratoacanthoma."  I'm thinking that is good, right?  I'm suppost to go back on Thursday to have a WLE.  She said that further test weren't needed becuase this cancer is not likely to spreadsheet.  Does anyone have expenience with this type of cancer?  Am I doing my due dilligence by just having a wide lesion excision?     I'm

I appreciate any input you may have.  Thanks!

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out4air's picture
Replies 7
Last reply 6/19/2013 - 7:49am

My husband is Stage IIIb Metastatic (several unresectable melanomas on head) and has been taking Zelboraf 6 per day along with 10 mg of Prednisone for 25 days and has all the below symptoms:

All symptoms:
Excessive Sinus drainage and very watery eyes
Tongue and inside of mouth is coated white
Water and liquids taste terrible - very bad taste in mouth
Blurry vision, hard to focus more so when reading things close up
Redness in face and feeling of Tightness of face -just noticed skin was slightly flaking
Rash everywhere (shoulders to ankles) - doesn't hurt but if chilled it is a very weird feeling. The two spots on outside of calves do hurt but are red and you feel a lump
No stamina - tired frequently
Not sleeping well
Flat like warts on head and side of shoulder - Dr. removed them on Friday 6/14
Headaches
Everyday seem to feel worse

Also from From 3/26 modified neck dissection his neck muscle is still quite painful and very tight even after two months of physical therapy - would muscle relaxer help? Or has anyone tried acupuncture therapy for pain relief in neck muscle after this surgery?

Some studies have shown that combining a BRAF inhibitor like Zelboraf with a MEK inhibitor reduces a number of side effects, including rash. A MEK inhibitor was approved by the FDA a few days ago, under the trade name Mekinist. Has anyone tried the combination of these drugs?

We are in it to win it!

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Last year I finally got around to going to see a dermatologist.  I had an appointment in 2011 but during the time between when the appointment was scheduled and the actual appointment - 4 months - my father got very ill and I just forgot to go.  So, since the spot on my leg looked just as bad as it had the previous year, maybe a bit worse, I finally made the appointment and went.  The dermatoligist said he didn't know what the spot was, but he wasn't concerned about it.  There was however a spot on my left cheek that he wanted to biopsy.  Turned out to be a desmoplastic melanoma - and I had had that spot for a number of years as well,  my primary care doctor had told me it was a cyst several years previous.  Well, I had surgery and a sentinal node biopsy and got on with my life.  Still didn't like the way the spot on the back of my leg looked and said so at every doctor's appointment.  Two weeks ago I saw a physican's assistant at my plastic surgeon's office and mentioned it again.  She said she would do a biopsy just to put my mind at ease, but didn't think it was anything serious - have heard this for several years now.  Well, then I get the phone call that it is infact another melanoma.  How in the world could all of these doctors have not diagnosed that when I kept pointing it out to them???  Now I am a bit concerned because I know it has been there at least 2 - 3 years and has gotten larger in that time.  Also how much confidence should I have in medical professionals who keep looking at this and saying they aren't concerned with it when they are supposed to be able to diagnose melanomas?  

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Kate M's picture
Replies 2
Last reply 6/18/2013 - 2:07am
Replies by: JerryfromFauq, hbecker

Just wanted to tell everyone Thank You!
My mom is stage iv and I'm trying the best I can to help her throught this nightmare.
The information here is helpful and so appreciated .

Kate

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sjl's picture
Replies 14
Last reply 6/23/2013 - 3:08pm

Thanks to all who have helped me over the past 13 months with my husband's melanoma.  It is with deep sorrow that I report that he passed away last Friday.  He fought a very brave fight, never compained, never gave up and had hope until the end.  His was a particularly aggressive form and there was no stopping the beast.  but through this board I became educated, learned about the different types of treatments and variations of melanoma and was able to discuss his situation with all of his medical team.  I was always amazed at the help and support I got here and by the courage of those of you who are fighting this thing.  My heart aches but I am wishing all of you the best.  With the new treatments coming out and the ongoing research it is my sincere hoope that this beast will be beaten down.

Susan, wife of Jim

 

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ad2424's picture
Replies 6
Last reply 6/13/2013 - 4:41pm
Replies by: joy_, JerryfromFauq, ad2424, Anonymous

According to this study (http://www.ncbi.nlm.nih.gov/pubmed/23666915) 10mg has higher survival rates than 3mg. Does anyone know if studies are ongoing regarding best dosage?

Does the FDA ever change a dosage once approved?

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According to this study (http://www.ncbi.nlm.nih.gov/pubmed/23666915) 10mg has higher survival rates than 3mg. Does anyone know if studies are ongoing regarding best dosage?

Does the FDA ever change a dosage once approved?

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NYKaren's picture
Replies 5
Last reply 6/20/2013 - 9:52am
Hello,
If you are on a Merck PD1 trial and had to do a 28-day washout from another drug (in my case, Zelboraf), did you have to wait to have your scans until the 28 days were up, or were you able to have the scans the week before and then actually begin the trial on day 29 or 30?

It looks like I'll be on the Phase 2 trial (with the chemo arm, urggh), provided of course my brain MRI is clean, and I'm trying to see how fast I can actually start whichever drug I get. My onc has me scheduled for scans on day 29, but she's asking Merck if the scans can be done the week before, so I thought I'd ask you'all here.
Thankfully, she prescribed Ativan, as I am a real mess with the waiting.  It's back in my ear, and quite painful. 
Thanks,
Karen 

Don't Stop Believing

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SarahW's picture
Replies 8
Last reply 6/14/2013 - 5:40am
Replies by: SarahW, POW, gostan, jmmm

Hi all,

Just back from Moffitt last night. My husband has 2 brain mets, one is 2.6 mm the other 2.7 mm. We are kind of stunned, but I suppose we shouldn't be. He's on Vemurafenib. He was on XL888 with the Vemurafenib, however XL888 has been d/c'd due to brain mets. He's off study now. The tumors in abdomen and lungs etc are stable. Oncologist is proposing stereotactic radiation.  Is this the same thing as Gamma Knife? Oncologist said it would be a "one time targeted radiation of just the tumors, not the whole brain." If you or your family member has had this procedure how did you/they feel after the procedure? Any particular side effects on the day of or after treatment?

 

Thanks so much for your input.

Sarah

www.thelaundrythief.blogspot.com

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Hi all,

Just back from Moffitt last night. My husband has 2 brain mets, one is 2.6 mm the other 2.7 mm. We are kind of stunned, but I suppose we shouldn't be. He's on Vemurafenib. He was on XL888 with the Vemurafenib, however XL888 has been d/c'd due to brain mets. He's off study now. The tumors in abdomen and lungs etc are stable. Oncologist is proposing stereotactic radiation.  Is this the same thing as Gamma Knife? Oncologist said it would be a "one time targeted radiation of just the tumors, not the whole brain." If you or your family member has had this procedure how did you/they feel after the procedure? Any particular side effects on the day of or after treatment?

 

Thanks so much for your input.

Sarah

www.thelaundrythief.blogspot.com

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Replies by: POW, 5374brian, Tim--MRF

What a roller coaster ride my wife has been on since since April 29th. We elected surgery on April 29th which the surgeons and oncologist recommended Hospice care after being in Moffitt for 10 days of recovery. We returned home with Hospice care and pain management. We were told to make it to June 10 and with a good MRI and no more surgeries we could start the Merks - 3457 trial. The good news is MRI was good all prior mets are responding good to the WBR that she finished while recovering from surgery in hospital. We came home scared and felt beaten but we kept looking forward to 6/10.  First visit for vitals and blood work was 6/11 and now we are waiting on a call for her first infusion. With little side effects from the IPI we are told she should have just as little from the trial. Does anyone have news on how the Merk 3457 trial is going? 

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aldakota22's picture
Replies 15
Last reply 8/29/2013 - 6:15pm

  Does anyone have any info on Kellygirl,  or  Dick_K ? Have not seen  any  posts in quite awhile. Pray and hope all is well. Thanks.  Beat the Beast.   Al

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hawaii marcus's picture
Replies 11
Last reply 7/18/2013 - 4:21pm

Hi,

I'm a new Nasal Mucosal Melanoma patient. Disease free 3 months out after 2 sinus surgeries. Currently undergoing 30 treatments of radiation.

Any other Nasal Mucosal Melanoma patients in here? I know it is rare, and I have done my research on it.

I am hoping to be in the 25% that survive 5 years or more. 4 years and 9 months to go to prove it!

 

Live life and enjoy what you have!

 

Aloha!

 

my story ~~~

marcuscancervive.tumblr.com

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flvermonter's picture
Replies 1
Last reply 6/12/2013 - 7:07pm
Replies by: POW

Hi Again,

 

My husband's notes were on Moffit from his removal of all lymph nodes last week.  This is what Dr Zager had noted:

"  The patient had extensive bulky adenopathy with desease overlying the subcapularis muslce and involving latissimus muscle.  We did take a portiono f his latissimus  uscle and sent a soft tissue nodle for frozen scetion, which came back as positive for metastatc melanoma.

... He had melanoma metastases in soft tissue nodeuls medially and inferiorly to the axillary vein as well. We cleared out the Rotter's nodal basin as well with the help of electrocautery, and we used medium hemoclips on any small lympovascular pedicles.   We then divided the contrents between lels 1 and 2.  He had extensive level 3 disease both in the floor of level 3 as well as in the apex of level 3 and immediately posterior to the axillary vein.  We carefully dissected all these contents our of leve 3.   We passed level 3 contents off the table as a separate specimen."

Dr Zager also said he was stage iiic melanoma and I said you said that before the surgery.  he said well he must have meant stage iiib, as he is definitly stage iiic now and prognosis is fair.  What does "fair" mean?  I know it is less than good, and better than bad, but can you give more definition?  Dr Zager met with me after the surgery and said my husband had "alot" of disease and that he thought he should not have the lung surgery and would talk with Dr Toloza.  6 days later, the lung surgery has been cancelled and we got a call today for an appointment on 6/26 with DR Dilling at Moffit, a thorasic Onc for radiation.

 

What are your thoughts on the melanoma notes from the doctor?  Obviously, I know it is dangerous, but in english what does this mean. 

 

Thanks, Mary

Hugs to all, patients and care givers.

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