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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stotes's picture
Replies 4
Last reply 9/21/2016 - 3:34pm

I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle.  Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)?  Or should I just start Opdivo alone?  I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system.  The trial is not randomized so I know that I will get the drugs.  I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it.  I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices.....  Christal 

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laulamb's picture
Replies 3
Last reply 9/21/2016 - 2:42pm
Replies by: laulamb, Gene_S, sleepyt23

Hello,  I had my 3rd infusion of ipi 3mg on 9/13.  I was looking at my bloodwork over the weekend and I noticed my LDH (Lactate Dehydrogenase) levels: 

8/2 = 163, 8/23 = 156 and 9/13 = 195

(range should be 92-192 U/L)

Is there concern for my LDH to rise to 195 before my 3rd infusion?  

Thanks in advance!!   

Laura

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LEEPOINTON's picture
Replies 3
Last reply 9/21/2016 - 11:46am
Replies by: ian0502, SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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I know we all insist that your oncologist matters...and it does!!! A specialist in Melanoma stays up-to-date on all the newest information and medications, giving you a greater chance of good outcomes.

But do we focus as much on our surgeons?? All surgeons are NOT created equal. Here's a new study out thats a good guide on what you should look for and what you should ask before surgery to get a better outcome.

http://www.wsj.com/articles/a-new-factor-when-choosing-a-surgeon-1474301023

Always do your homework and keep fighting!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Check this out:  www.shadeitgreen.org

 

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ronald duclos's picture
Replies 34
Last reply 9/20/2016 - 5:52pm

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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Beth606's picture
Replies 10
Last reply 9/20/2016 - 12:19pm

I'm looking for some reassurance or information. I had a thin melanoma removed from my left calf in March of this year. Stage 1a, 0.40, mitotic >1...all the things you want it to be other than Stage 0. Fast forward to the past month. I have had typical drainage from mild seasonal allergies, my ears have a lot of pressure, but then last week I noticed my lymph nodes under my chin are enlarged. i went to my GP who gave me an antibiotic in case it is a bacterial infection. I started the antibiotic on Friday, nodes still swollen. They are soft and movable.

It just so happens my regular 3 month follow up is in a few days, so hopefully I will get more info then. I'm just

I don't know if I'm totally overreacting? At my staging should I logically assume this is a viral or bacterial infection? I hope I'm just concerned for no reason.

 

    

Beth Johnson 

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Amanda's picture
Replies 3
Last reply 9/20/2016 - 5:20am
Replies by: Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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Travis G.'s picture
Replies 5
Last reply 9/20/2016 - 12:19am
Replies by: Anonymous, Aida Ballesteros, debwray, youngann, Gene_S

How can they tell you what Stage you are without the pet/ct scan results? I'm told I'm stage 3 after the SNB. Just wondering. Thanks.

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stevecathy's picture
Replies 6
Last reply 9/19/2016 - 5:42pm

Thinking of a second opinion. My husband is currently seen at ctca in zion. He has been on mek/taf combo for about 8 months . We have had ups and downs with side effects. Now he is having double vision. He has had 4 infusions of yerovoy, but then had Mets in transit so they immediately started combo. Just looking for possible 2nd opinion. We are in central Illinois so st. Louis or Chicago??? Any thoughts would be appreciated. Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2016 - 3:42pm
Replies by: sleepyt23, Anonymous, jamieth29, Ed Williams

I had a slnb then a clnd in nov 2015. I got really sick recently with a bad cold. Sore throat slight fever but now all i have is the congestion with a cough. Wed i noticed a red slightly raised bump 3mm red in color.(painless) What do intransit melanoma looks like. All the melanoma intransit pics look nothing like this tiny red bump. All look black and scattered.Can anyone tell me what intransits look like. Im just praying its a pimple or boil from the bad cold i had. God bless all of you brave people fighting the fight everyday. Anon
btw the mark is above the skin by my clnd

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Nanners10's picture
Replies 2
Last reply 9/19/2016 - 2:22pm

Hi all,

I haven't posted in a while (but I read and follow daily) but am here again seeking thoughts, comments and similar stories.

Brief history:

WLE 2002, progression to groin lymph nodes 2014. Started (Apr 2014) and completed ipi vs interferon trial Apr 2015 (including four maintenance doses), local progression (groin lymph  node) again in Nov 2015. Currently on interferon (no judgement please).

There have been two nodules in my lungs since the first CT scan I had when I recurred in 2014. These nodules started at 7 and 8 mm repectively.  One of them grew to 1.2 cm in Dec 2014. Went in for biopsy to find out that it had shrunk down to its previous size so biopsy was cancelled. Nodules remain relatively stable in size until August 2016. Only one increased in size again (same one) but to approx. 1.4. MRI done the following week and size is measured at 1.2 cm. My doc is now ordering a pet scan since he feels the position of these nodules and their size make them difficult to biopsy. I did have a pet scan in Feb 2016 that noted the nodule at 9mm but not increased FDG uptake. 

Onc says that the radiologist feels they are growing and maybe they had reacted to the ipi when I was first given it but now they are getting bigger (which I don't believe is necessarily true in general but true for the most recent scan). Onc says if pet scan is negative he will have to consult with a lung specialist to see about figuring out what they are and/or having them removed.

Has anyone experienced anything similar or have any thoughts on this? Another thing to add into the mix is that whenever my CT scan is around my menstrual cycle these nodules seem to be affected, crazy hormonal changes maybe?

Thanks in advance for your thoughts.

Nancy

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Joycem's picture
Replies 1
Last reply 9/19/2016 - 1:11pm
Replies by: Julie in SoCal

https://m.youtube.com/watch?feature=youtu.be&v=FZ5CkEajszU

Not new info to the experts on here, but was a nice clear introduction to the topic I thought. Australian Dr., but info is pretty general regardless of locale. 

 

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Patina's picture
Replies 3
Last reply 9/18/2016 - 9:14pm

I read the post from Rob and Adriana about recent developments and noticed that no one had responded to them. Can anyone help them out? They need help.

Can anyone provide them with ideas on where to go for help with travel, finances and maybe a second opinion or larger hospital? - They are in Washington State and she has been diagnosed with Leptomeningeal Carcinomatosis.

I think some help can be received from:

     American Cancer Society

     Angel Flights

I found a possible trial:

     Iodine I 131 Monoclonal Antibody 3F8 in Treating Patients With Central Nervous System Cancer or Leptomeningeal Cancer

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miaka618's picture
Replies 5
Last reply 9/18/2016 - 7:28pm
Replies by: miaka618, MoiraM, Anonymous, SABKLYN

So after I was diagnosed, I found out that skin cancer somewhat ran in my family. Both of my grandfathers had some form of a skin condition that required surgery, but that is the extent of what we know. They are both deceased now so I can't ask them the details and both of my parents were to young at the time to really know anything about it. I am the only other person who has had melanoma in my family up until now.

My aunt noticed that she had some new moles on her arms a couple months ago. She said she wouldn't have thought anything of them if it wasn't for me, which is good. She had them both biopsied and one came back precancerous and the other came back melanoma. I have no idea what any of the details are and she doesn't remember, but she says the doctor said the margins are clear and she shouldn't have to worry about it. OK, good. Well, fast forward to a couple weeks ago and she has new growths near the old site. I told her she needs to get in right away and have them checked out, but she insists on waiting until her next appointment with her primary care physician in a couple weeks and have her refer her back to the dermatologist. I told her she can go straight to the dermatologist without a referral, but she would rather wait. I also found out that her dermatologist is the same one that told me my mole was nothing to worry about. Grrr! I've explained to the best of my ability about how important it is for her to move quickly and to maybe get a second opinion, but she is a stubborn old woman. 

The only thing I can do now is hope that she gets in on time.

April

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