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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gaby's picture
Replies 2
Last reply 7/8/2014 - 2:24pm
Replies by: Anonymous, hbecker

Hi!

I feel scared to tell you that my husband is 2 years NED…. were two years of much anguish, tears, anxiety, a rollercoaster of emotions. Thank you all for your support and information, you are a big company when I am filled with despair, and today I want to share this good news with you. I know we did not win the war but .... step by step.

 

My husband is stage IIIa from june 2012 At that time the oncologist gave him two options:  watch and wait or pegylated interferon for 2 years. He did not felt comfortable with doing nothing,  so He started  pegylated interferon on October 2012.

 

If God helps us and the next PET will be clean, my husband finalized interferon  pegylado on October 2014.

Melanoma has no rules but today I feel hopeful.

God please give us the opportunity to have a child, because interferon caused infertility ...

Regards

Gaby

(from Argentina)

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brittanyx's picture
Replies 28
Last reply 7/12/2014 - 6:33am

I have read SO many mixed views on Interferon. I'll be starting it soon for year, 5 times a week for the first month, and 2-3 times a week for the rest of the 11 months. Lately i've been reading that is only "prolongs" the cancer, not getting rid of it for good. Has anyone done it and have been clear? Also I don't understand how it is supposed to help. One person described it as your immune system fighting it. If that's the case why are there all these bad side effects that make you sick? I'm 19 and I don't want to be sick for a year and  have it come back and I did it for nothing. I know no matter what there's always that chance, but like I said lately i've been reading that it only prolongs it. I'd love to hear everyone's personal experiences. 

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brittanyx's picture
Replies 1
Last reply 7/6/2014 - 9:56pm
Replies by: Fen

I'll be doing the interferon treatment fora year, 5 times a week for the first month and 2-3 times a week for the rest of the 11 months. I'm scared for the side effects. I'm trying to figure out ways to keep megoing when it's hard and stay focused and I thought being in contact with people that have done interferon or doing it right now may help. So if any has done or is doing interferon, I would love to talk you and keep in contact. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/8/2014 - 7:43pm

How do lymph nodes feel if they have melanoma?  Sore? Just larger?  Hard?  Soft?   I'm just curious.  Thanks!

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Anonymous's picture
Replies 8
Last reply 7/7/2014 - 7:24pm
Replies by: Anonymous, Ed Williams, Gene_S, RJoeyB, washoegal, Teochasse

Hello

i follow the forum daily. I am a parent of a stage 3c patient. After two lymph nodes resection surgery my son was diagnosed as NED. He is participating in a trial and had so far two infusions of ipilimulab 3mg/kg. 

The trial involves, among other tests, a CT scan every 3 months. I just wonder if not having any tumor to compare to why it is necessary to expose him to frequent radiation. I wonder if anyone has experienced a different diagnostic and follow up method while participating in a trial. 

Thank ou

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Replies by: jualonso, arthurjedi007

I would like to know if there are some good responder to inmunotheraphy after fail to Combo tanfilar/mekinist. I hope many many many....

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Replies by: hbecker, Ed Williams

Hi everyone, 

My fiancé has just gotten a melanoma diagnosis: Breslow 1.15, mitosis rate 1, no ulceration, Clark's either 3 or 4 depending on which report you look at, located behind ear, tumour removed with clear though very narrow (3 mm) margins, no symptoms, bloodwork and abdominal ultrasounds all clear. We are meeting this week with the surgeon who will do a WLE and SNB. 

I'm trying to come up with questions to ask at this meeting. I don't want to waste the doctor's time, but I also want to use this opportunity to understand the info that's coming at us from all the reports. Any suggestions as to what are useful questions to ask here? So far I've got:

1. The primary tumor was completely excised a couple of weeks ago (by a family doc who thought it was just a mole). Will that excision change the lymph drainage patterns? In other words, does the removal of the primary tumor affect the accuracy of the SNB?

2. The location behind the ear seems to make it difficult to get the complete 1 cm margins, especially in depth  (there's really just bone under the skin there). Is this going to be a problem?

3. When would the doctor recommend a complete lymphectomy? Does the location on the body have any bearing on next steps, if the SN is positive?

4. Is it possible to do testing for the BRAF mutation, either from a positive lymph node (if one is found, which we really hope not) or from tissue from the WLE?

Any other things I should be thinking about here? 

 

Many thanks in advance. 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2014 - 3:46pm
Replies by: Bubbles, Socks

I'm a little confused about this, I know it limits some treatment options. Is this a good thing or bad , does it changes recurrence chances.

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/6/2014 - 5:59am
Replies by: Kim K, Anonymous, washoegal

CT found questionable areas on chest wall and axilla, surgeon said too small to worry about. This exam I found small enlarged nodes by my collar bone - again surgeon said too small to worry about. I'm thinking of just opting out of scans and visits until something just jumps out. One year out from initial dx IIIB, mitosis 18, one positive lymph node.

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/6/2014 - 5:09pm
Replies by: Anonymous, Janner, CHD, washoegal, Fen

Hi everyone!  I have posted on here several times.  I will be honest- I'm panicked.  My hip has been aching for about two weeks and I'm afraid it's bone mets.  I'm currently stage 1b, but I can't get over this fear.  I've only been diagnosed for since the beginning of April.  I may just be paranoid, I don't know.  It's like an achey feeling- sometimes feels achey in my back too.  The other piece is I have a 5 month old baby too- she is our first and I don't know if any of this is from her- even though it's just now starting to feel achey.  Thanks for your thoughts.  I hope all of this makes sense- :)

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jjd583's picture
Replies 5
Last reply 7/23/2014 - 6:00am

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

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Ginger8888's picture
Replies 2
Last reply 7/5/2014 - 8:47am
Replies by: Ginger8888, Anonymous

I've been reading that people are getting 3mg of Yervoy and i just looked at my report and it says i'm getting 200mg..I'm confused....Can anyone help me figure this out?..200mg seems like a lot compared to the others..

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delora's picture
Replies 9
Last reply 7/7/2014 - 12:19pm

A month ago, I went in for my routine PET scan.  My breast and ovary lit up.  After a breast biopsy, they determined that the melanoma has spread to my breast.  I haven't had any tests on the ovary.  I have an appointment at Duke Cancer Center on Monday.  From our phone conversations, the Dr doesn't want to do surgery to remove the melanoma.  I am assuming I'll be going straight into treatment.  I already had interfeion, which was awful.  Has anyone else had this experience?  Any advice?

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BrianP's picture
Replies 6
Last reply 7/15/2014 - 12:44am
Replies by: RJoeyB, BrianP, CHD, Maureen038, Anonymous

Just found out my uncle was diagnosed with muscal melanoma.  I'm not as familiar with muscal melanoma as I am with your everyday run of the mill melanoma.  Few questions I have if anyone can comment on:

Is there anywhere and anyone in particular that specializes in or is know as "the place" for muscal melanoma?  I've heard Dr. Hodi and Farber is pretty experienced with muscal melanoma.  He's currently located in Virginia so probably limited to the east coast.

Current thinking doesn't put a high value on chemo and radiation (other than in combination with immunotherapy) for most melanoma but is that not so with muscal melanoma? 

I heard that muscal melanoma isn't as responsive to Ipi as other melanoma (something like only 7%).  Does anyone know if this is true.  Has it been anymore responsive to anti-PD1?

 

Thanks for any advice or information anyone can provide.

Brian

 

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kellygrl's picture
Replies 7
Last reply 7/7/2014 - 10:12am

My husband was diagnosed 2.5 yes ago with brain mets (13 tumors).... treatments have been:
WBR
Zelboraf 14 mos
Gamma x 2 (about to do a third)
Dabrafenib/trametenib currently while also receiving Yervoy
Latest results.. brain tumors are shrinking and/or stable!!
Never give up hope!! Keep a positive mind and attitude!!

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