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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lastexit470's picture
Replies 14
Last reply 3/27/2016 - 9:19am

Hi, my wife was diagnosed last week with stage 3 in her right groin lymph node.  She can feel it, which is why she went to the doctor to get it checked out.  I believe it was 7 cm.  Is that big?  Woudl this be 3c?  They are going to remove the lymph node and everything surrounding it.  Is this correct and what do they usually do following the lymph node removal?  Any suggestions?  She is 36.  The PET scan showed it was contained so far to that one area of her body.  Thank you in advance.  Doug

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Lin P's picture
Replies 5
Last reply 3/27/2016 - 12:35am
Hi!
First of all, I apologize my poor English. I am not a native English speaker but doing my best.
 
I am here for my mom.
She is 50yrs old Asian woman and was diagnosed with Melanoma stage III on Christmas eve in 2015. Its undesectable because it's right next to bunch of blood vessels in her neck.
 
My mom actually visited a dermatology about 10years ago suspecting a rash on the back of her neck is melanoma. But the doctor said it's just not melanoma, and simply removed it with a laser. Now, 10 years later, it turned out that was melanoma.
 
Now our goal has been to reduce the amount and size of the tumors on her neck lymph nodes so she can undergo an surgical operation.
 
 
 
 
<The path we have followed - from Jan 2016 to March 2016>
 
1. She was on a little bit lower doses of Keytruda for the first 6 weeks
   - Keytruda worked really well. 
 
2. She got 24times of tomotherapy done after Keytruda for 5 weeks. its been only 2 weeks since the last tomotherapy and we are still waiting for the final result.
 
So as the result of Keytruda and tomotherapy, about 80% of the tumors are gone (in 6weeks)
 
3. Her oncologist said Keytruda may no longer work because the cancer tissues left are too dense. She recommanded my mom to switch to Zelboraf for a month and see if it works. So my mom is now on Zelboraf(10 days so far) and If it works well she will probably be able to have surgical operation.
 
 
 
 
 
Because melanoma is very rare and unfamiliar disease in my country, there is no many highly experienced doctors, no much reading material available for patients, and no patients forum like this.
I've been translating the posts into my language when I have free time so my mom can read and feel she is not fighting alone. We are inpired and learning a lot here on MRF. So thank you all :)
 
I will keep undating on this thread.
 
I wish you and your family all the best.

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Tamlin's picture
Replies 5
Last reply 3/26/2016 - 12:17pm
Replies by: Tamlin, Nanners10, Janner

Hi

i was diagnosed with subungual melanoma and had to have my toe amputated in 2006.  I have been fine since, however, I have been worried about a lump in my groin.........the thing is, this morning the lump was a bit smaller  can I assume that it won't be anything serious due to reduction in size, and should I cancel my appointment with dermatologist ?

Thanks 

 

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britt1991's picture
Replies 4
Last reply 3/26/2016 - 1:09am

Hi,I am 24 and had two moles removed last year. One was severely atypical,and the other moderately atypical. My doctor recommended I see a dermatologist once a year,so I saw one less then a year ago. Maybe 8-10 months ago. I went to my doctor a little over a month ago for something unrelated,and figured I'd have her check out my moles while I was there. She wanted to remove one I've had since birth. I had this done on Monday and am very anxiously waiting for my results. There's no way my dermatologist didn't see it. Is it less likely to be melanoma,since it was looked at somewhat recently? Or possibly at least not advanced if it is? Thanks for any replies. I have been really stressed lately. 

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Steve Plasier's picture
Replies 17
Last reply 3/25/2016 - 10:27pm

I am curious about what side effects are common with patients. I just had all the lymph nodes removed from my right armpit and will start Yervoy soon.

Steve

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Anonymous's picture
Anonymous
Replies 37
Last reply 3/25/2016 - 6:29pm

Are a majority of stage 1 and 2 melanomas "cured?"  I was just diagnosed 1b with 1.9 mm.  Is there a chance that I might never have to deal with melanoma again- or am I just a ticking time bomb? It seems that I read so many conflicting articles.... I'm pretty sure I have over googled!  I'm afraid I'm going to leave my husband and 4 month old- I just don't know what to think.  And I also don't kjow if we will have any more kids.  So many things have talked about the relationship between pregnancy and melanoma.   Would we even be approved to adopt with me having melanoma?  So many emotions..... 

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Scooby123's picture
Replies 12
Last reply 3/25/2016 - 10:09am
Replies by: Scooby123, Mat, Momofjake, Anonymous, BrianP, Bubbles, jennunicorn, Gene_S

Well after waiting 4 weeks for results my results was liver , lungs still stable but found 4 MM. spot on brain.

going to have radiotherapy next week to treat it., but no other treatment . I think due to my lungs liver stable from ippi, and they treat head different . 

Please advice , experience on head tumours and radiotherapy treatment. Been told cannot drive, was planning a holiday with my daughter before she goes to uni in September.

keep well all

scooby123❤️

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2016 - 1:44am
Replies by: Anonymous, Rocco, BrianP

I had a melanoma in situ removed by slo mohs surgery a year and 1/2 ago.  All margns were clear and have been going for my by yearly skin checks.  About a month ago,  I wound up in the er with severe stomach pain.  They did a abd CT and found nothing in my stomach, but nodules in my lungs.  They sent me for an additional full chest CT which indicated more nodules.  I saw the lung nodule specialist today and the "team" is convinced it is melanoma - awaiting biopsy.  I have no other systems, blood work is fine and no lymph nodes that were in the CT are enlarged.

I find this incredibly hard to believe and am terrified!  I am a healthy active person and not ready to give up on life

Anyone else have this experience?

 

thanks

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/24/2016 - 11:07pm

I need some input. I'm worried about biopsy I had five days ago. Nurse said they didn't get a good stain and had to send it somewhere else. Does this mean it's probably cancer. I've had the mole for years and it hasn't changed but he did a punch biopsy just to check. Could it be something else or should I prepare myself. I have obvious anxiety over this. Any help appreciated ! Thanks!

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CCJ's picture
Replies 2
Last reply 3/24/2016 - 4:59pm
Replies by: CCJ, Janner

Have other people found that the biopsy results take a long time to come back? Nearly 2 weeks for my husband's  initial diagnosis and waiting for WLE results... on 8 days now. 

Anyone know why this might be?

Thanks

Carolyn 

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Mnabean's picture
Replies 3
Last reply 3/24/2016 - 3:13pm
Replies by: Mat, Bubbles

My friend was diagnosed stage IV in December 2015. Started opdivo/yervoy combo in Jan and had to stop after 2 treatments. She had to have fluid drained from the heart cavity and still has drains. Her physician said there was nothing more he could do. They never had a 2nd opinion. I pushed for one and they went to Cleveland Clinic and again were told nothing more they could do. She is BRAF neg. They didn't even suggest a MEK or Keytruda. I would love for them to see someone in NY or TX but I don't them to be dissappointed again, but I want to make sure all options have been considered. She is weak, but as far as I know, it has not metasized to liver or brain. Any suggestions would be amazing! 

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Dick, TJ, and many others will be at the 14th annual Safe from the Sun walk and run and FREE screening by top derms.  Go to:  www.safefromthesun.org and join thousands of melanoma patients and families to celebrate life!

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DZnDef's picture
Replies 6
Last reply 3/24/2016 - 7:57am

Articles like this confuse me.  Are we supposed to avoid the sun or get more sun to increase our vitamin D levels?

http://www.cancertherapyadvisor.com/skin-cancer/melanoma-poor-outcomes-lower-vitamin-d-levels/article/484874/

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Lin P's picture
Replies 4
Last reply 3/24/2016 - 4:34am
Replies by: Lin P, Bubbles, emagdnim83

Hi.

My mom was diagnosed with Stage iii melanoma in the Christmas eve.

 

Now her state is..

 

● No primary lesion found.

There was a rash removed 10 years ago. There's a possiblity the rash was the lesion, but no evidence left.

 

● Numerous lymph nodes involved on her neck and shoulder. Oncologist says its unresectable because it's right next to bunch of blood vessels.

 

● She started Keytruda last week, and radiation oncologist will treat the lymph nodes with Tomotheraphy in a week.

 

 

The questions I have is..

 

● Is it common to use lower dosage of Keytruda?

My mom is receiving 1.5 ml/kg, which is less than the recommended dosage(2 ml/kg)

I am afraid if it may not be effective enough.

 

● Anyone with unresectable stage iii melanoma?

If anyone is fighting or have survived unresectable stage iii melanoma, could you share the story, how you were/have been treated?

 
● Is it Okay to take Selenium during radiation theraphy?

 

 

 

Any help, experience share will be appreciated!

 

 

 

I'm trying to stay positive but can't stop myself feeling doubt about everything including her medical team. There's NO DOCTOR WITH ENOUGH EXPERIENCE because It is very very rare case to have melanoma in my country. There's no statistics, no patients forum, nothing.

 

I feel very lucky that I can read and write English, and to have found here. I am really learning a lot from MRF. Thank you all.

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way's picture
Replies 2
Last reply 3/24/2016 - 12:25am
Replies by: way, Janner

Dear Community, 

I received today the following biopsy report from a mole that I just had removed. I will see the doctor in a few weeks:

"The epidermis shows elongation of rete ridges. Large, irregularly-shaped nests of melanocytes are seen along the basal layer. The cells show mild nuclear atypia and contain fine melanin granules. A rare abnormal mitotic figure is noted. Intraepidermal spread of single melanocytes is also noted on melan-A strain. ki-67 demostrate a low proliferation index. There is papillary dermal fibrosis and a superficial perivascular lymphocytic infiltrate present, along with melanophages."

How does it looks?

Thanks!

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