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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dian in spokane's picture
Replies 2
Last reply 9/7/2011 - 2:46pm

This morning my local paper highlighted this organization and it's founder. I found it pretty interesting and went out on the web to find this website to share with you all. I know how difficult it can be to find yourself suddenly tossed into the machinery of the American Medical system. I hope this is useful to some of you.

 

dian

 

http://www.patientnavigator.com/content/

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jmmm's picture
Replies 6
Last reply 9/7/2011 - 8:06am

I have a question about trials--what are the big hospitals treating metastatc melanoma and what are the "big" trials that are going on right now.  My husband has disease progression after yervoy working for a couple of weeks.  His oncologist is sending him to Dr. Linnette at Siteman Cancer Center (st. louis--about 45 minutes from where we live).  He's the closest specialist running trials right now.  We're open to looking farther away, but are only willing to travel if there is really something promising going on--we have 3 young boys and since it seems at this point, my husband has a limited time left to spend with them, he doesn't want to spend it running all over the country--he wants to spend as much time as he can with our boys.  We know there's Zelboraf--we're hoping to wait on that for awhile, since it only lasts for a limited amount of time and neither tumor he has now is in a place it will be fatal. 

We've looked a bit into IL-2 and it sounds kind of promising.  Will any oncologist do IL-2, or do you have to go to a specific center to get it??  Since we're in the process of switching doctors, we're not sure where to turn at this point.

Please help us out--my husband is only 38 and in good health (minus cancer:)).

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Phil S's picture
Replies 6
Last reply 9/6/2011 - 3:56pm

Robert posted back the first week of June that he was going to do the biochemo treatment in California. I was following his posts during his decision making, and have been hoping he had good response. If you get a chance let us know how you are doing? Valerie (Phil's wife)

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boot2aboot's picture
Replies 7
Last reply 9/6/2011 - 1:38pm
Replies by: Laurie from maine, Richard_K, TracyLee, Anonymous

I know we did something like this before on the board, but i want to hear from all responders and non responders of zelboraf...i want to know everything you are going through...

since the failure of triple whammy chemo (cisplatin, vinblastine and decarbazine)  i did or which did me in...i am leery of side effects...thank you.

boots

don't back up, don't back down

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j.m.l.'s picture
Replies 3
Last reply 9/6/2011 - 9:41am
Replies by: Lisa13, Gene_S

Melon. keeps multipyiing. going on Yervoy next week. CAN ANYONE SHARE THEIR EXPER. WITH THIS DRUG, SIDE EFFECTS, DID IT HELP THE CANCER, IF NOT WHAT WAS NEXT STEP. THANK YOU

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/6/2011 - 8:56am
Replies by: nickmac56

I have just been diagnosed as a stage IV melanoma patient, and have been told these are the best therapies out there. 

Has anybody been through these and if so, how are you doing? what are the side effects, and what is the difference between the 2?

Insert Generic Inspirational Motto Here

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CKasper's picture
Replies 21
Last reply 9/6/2011 - 7:14am

In 1984 I was pregnant with my second child and was diagnosed with Melanoma.  Two skin lesions one on my right wrist the other on my right ankle.  I was to further my treatmet but I prayed to God to let me live so I ignored it and lived until 2005 when it came back with a vengence.  Stage 3B, i think.  In 2006-2010 when through surgery, and all kinds of nastsy illnesses.  Then came the biggest scare of them all.

October 2010 my husband of 36 years left me for a girl 20 years younger then he.  He said he just couldn't live with someone dying. So he took most of the valuables, left me no money, no food, no heating fuel for winter, a bunch of unpaid bills and I was in shock..  This has been just as hard if not harder to deal with than my second ourrence.

 

36 years down the tube, thank you melanoma.

 

C

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Shelby - MRF's picture
Replies 13
Last reply 9/6/2011 - 12:32am

This message is in response to several questions, comments and concerns we have received over the last few days.  There are varying opinions regarding the ability to post messages and comments using the Anonymous feature.  After weighing the pros and cons again, this feature will remain in place.  This feature gives old and new MPIP users the ability to ask questions they otherwise may be uncomfortable asking.  Whether it is because of embarrassment, the desire to receive unbiased responses, or even the need (or want) to remain anonymous from children or other family members, it is important that this feature continue to be available. 

The Anonymous feature is not intended to be used as a shield from others users when making rude or hurtful comments.  The MRF has bulletin board policies and a code of conduct that all users agree to when registering on our site.  The MRF also has the ability to see who posts what, even when something is posted anonymously.  When the policies are broken, those individuals are contacted by us and appropriate action is taken.  We do our best to monitor the bulletin board and remove inappropriate material and comments and the MPIP users have helped us with this task. 

To assist us further, we have created a new email address that can now be used if you have direct issues regarding specific bulletin board posts or comments.  You can still use the Contact Us form on the website, or you may send us an email at mpip@melanoma.org

Please keep in mind that this board is full of strong opinions and different personalities.  This increases the chances that someone will say something that you disagree with or that you are offended by.   It is also important that you refrain from guessing who Anonymous posters are.  Because of the high number of users, there is a good chance that the wrong person could be blamed.  Thank you for your patience as we work to resolve this issue and, as always, we appreciate your comments and feedback.

Sincerely,

The MRF 

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Becky C.'s picture
Replies 6
Last reply 9/5/2011 - 11:43pm

,Hi. I had a right groin dissection about 4 weeks ago.  Thankfully all nodes were clear. I was wondering if anyone else that had this surgery has experienced pain and soreness down the inside of their leg. Its like a deep down soreness. It is gradually getting better. I actually am sore on the inside of my shin sometimes. I appreciate any feedback.

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jax2007gxp's picture
Replies 15
Last reply 9/5/2011 - 10:20pm
Replies by: jax2007gxp, JerryfromFauq, Anonymous, mcanova, lhaley, flynn, awg

Hello all,

I saw the surgeon today.  Assuming the insurance company approves the PET (I was told that insurance companies are making this difficult lately) and it is clear, the surgery is scheduled for 9/9.  He is planning to remove the superficial nodes from my right groin and will only take the deep ones if it makes sense to do so.  I know the more missing nodes means greater risk of lymphedema.  This really isn't what I'm wondering about though.  He said that he would remove a vein from the area and then detach/reattach a muscle in order to protect the area where the nodes were removed.  Has anyone experienced this movement of the muscle or removal of a vein?  I had not read about it anywhere and I'm wondering what to expect afterward.

As always...thank you so much for any feedback you may have for me.

Jacki

 

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An interesting and indepth article of what is being worked on in the melanoma research world.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3078100/?tool=pmcentrez

Future perspectives in melanoma research. Meeting report from the "Melanoma Research: a bridge Naples-USA. Naples, December 6th-7 th2010"

 

I'm me, not a statistic. Praying to not be one for years yet.

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bball's picture
Replies 3
Last reply 9/5/2011 - 9:14pm

I had 3.5mm in cheek removed 10 months ago up to this time I have had NED took a CT scan of chest and abdomin 1 month ago all clear. 1 week ago I noticed 1 enlarged lymph node on each side of my groin. I also had taken a injection of Mistletoe about a week prior to noticing nodes. Any experience with any of this

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Becky C.'s picture
Replies 11
Last reply 9/5/2011 - 8:30pm

Hi. I am stage 3a, had microscopic cells in sentinel node, had 6 more nodes removed that were all clear. I was given a very good prognosis by my oncologist, he said it is most likely that I am cured but he can't tell me one hundred percent, because it did get to the one node. He said there is that small chance that cells could bypass the nodes or that cells could have been in lymph vessels in between the primary and the lymph nodes. I don't feel that worried about the nodes, I think it most likely stopped at the sentinel. i do worry alittle more about the other, because I did have a high mitotic rate. My breslow was not real deep, 1.57mm. Does anyone have information about how often this happens? In the reading I have done, I have not read any examples of  a recurrence in the lymph nodes after having a dissection.  If it did, would it go to my remaining nodes that are there? Thanks, I appreciate any feedback

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rjcravens's picture
Replies 4
Last reply 9/5/2011 - 8:24pm

So yesterday I went to see the Dermatologist for my three month skin check. He tells me that he doesn't see any "areas of concern" and that he will see me in three months. As I am sitting there listening to him, I almost went into panic mode. I realized that I am trusting my life in this mans hands. If he misses something, will I find it? If we both miss it will it be widespread before I see him again in three months? I cannot handle the fear of not being in control of this situation. (Although I know I am not the one ultimately in control)  The spot on my arm come up in Jan. It grew so fast and so deep. It scares me so bad. Being a nurse I have seen to much and know too much. I know that docs have their good days and bad just like all of us. I left there still having this awful feeling in my stomach that something terrible is going to happen. I have had this gut feeling for two weeks now.

So then after that apt., I go to see the psych doc for the first time since all this started in Feb. I am telling him about this stage of fear that I can't get through. He prescribes Cymbalta 90mg. He says its all normal and in a couple of weeks I should notice a difference. (Note that I have been on cymbalta 60mg since June). He then begins to ask me about my support system. I have to tell you that I am so blessed in this area. I have the greatest husband and kids. My family and friends are supportive. I will never be able to pay my mom back for all her support. The entire family has went above and beyond. Its then that I realize, I am not afraid to die, I am just afraid of leaving my family. I want to see my kids grow up and spend time with family and friends (bargining). I know I am a stage 2b but I am telling you I have this really bad feeling.

The doc also gave me Remeron to help me sleep and not stay up thinking about things all the time. Which brings me to my next issue. My body has to be so confused. I am taking Ritalin in the mornings to fight the fatigue and be able to go to work for 12 hrs, along with the Cymbalta. Then at night i am taking the remeron to help me sleep and on the days i have injections i am taking Zofran and Ativan. My poor heart doesn't know wether to speed up or slow down. Can this be good?

I am done rambling now. Maybe its the interferon that is making my mind go crazy. Maybe its not. I just wish I could get over this whole fear stage.

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alicia's picture
Replies 12
Last reply 9/5/2011 - 5:44pm

Hey friends, this past thur I went to Vandy to have 3 lymph nodes biopsied that had a hypoechoic lesion in each.  My surgical oncologist was concerned about metatatic melanoma recurrence so they did core biopsies on each node.  They took 14 samples total and all came back negative for melanoma cells!!!!!!! The results were necrotic tissue. In a way I feel guilty that I have such great news to share but I just thought It may give some of you hope.  I have had 3 primary tumors with the most advanced stage 3 w/ (+) SNV 2.3mm melanoma, second was 0.59mm stage 1, and third in jan 2011 was over 2.3mm stage 2 (neg SNB).  Thanks so much for those of you who have helped pray for, encourage and educate me through all this.  much love to you all!!!!!

 

love ya,

Alicia

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