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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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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Anonymous's picture
Replies 6
Last reply 6/12/2013 - 11:32pm
Replies by: Kong-Gee, Newmom, Anonymous, Janner

Hello,

My husband got diagnosed with "lentigo maligna" from a punch biopsy.

After a wide local excision, the final diagnosis is "lentigo malignant melanoma". The pathology report says clark level 1 with all the cells confined to the epidermis but our doctor says it is not "in situ", but a thin lentigo malignant melanoma, with high metastatic potential. One doctor says it is the same result as the punch biopsy, and another doctor says it is not the same. Another doctor says pretty much all the white people have one of those on their face. They all seem to be confused and now fed up with my questions.

I have spent huge amount of time searching on the internet, but I can't find out what it means. We live in Korea where melanoma is very rare, especially the lentigo maligna melanoma. No doctor seems to have any experience in this particular area.

Is there a way to have our slides reread and get an expert opinion on this, possibly in Australia or in the United States? preferably without having to fly there? (We have nobody to take care of our 4 year old) We are not citizens of either one of the countries...

Thank you very much in advance.

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/10/2013 - 11:02am

I had a mole removed in 2005 from my calf. Last year I found a lump near my knee - had wide excision done. December I had a clear PET scan then in March found a lump under surgical scar on leg. Monday I start interferon..worried what this journey will be like.

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Tennisgrl's picture
Replies 2
Last reply 6/12/2013 - 7:15pm
Replies by: POW, Swanee

Went from feeling fine, on treadmill & working with high energy , to a sudden lack of energy.
Yavoy 4 treatments.
On Taxol / Carboplatin 15 treatments , now at 6 week intervals.

Any suggestions?

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DeniseK's picture
Replies 31
Last reply 6/20/2013 - 10:06am

Hello Everyone,

I just got back from my Radioloy Oncologist from my first round of SRS.  The Dr. pulled me into the office prior to treatment and told me we are not fighting just one brain met anymore, we are fighting 7.  There are only 2 that are big enough, 1cm and 12mm, that we can target at this time.  The rest are 4-5mm at this time or smaller.

I'm getting a PET scan done this Thursday to see if the Z has stopped working or maybe it's just not working on my brain.  I was planning on going to see my specialist and hopefully get into some trials but now that's out once again.  Now I will be seeing him to figure out what my next plan of action will be.  IPI? Braf + Mek? Temador?  I know there are others out there with the same situation, can anyone offer any advice or tell me a success story, I'm feeling really deflated.  My daughters wedding is March 2014 and I don't know if I'm gonna make it.  It was just 2 months ago that I only had the one brain lesion and now I have 7, seems like it's getting pretty agressive.  I won't know the status of the rest of my body until probably next week.  Uugghh!!  I was really hoping Z was gonna work.

Any help will help!!

Thanks,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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