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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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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Jackie W's picture
Replies 53
Last reply 9/5/2011 - 5:34pm

Jerry had a bad accident last night.  He fell off a horse and was dragged.  He was airlifted to a hospital in Denver.  I just got off the phone with his wife Sue and she told me he is in critical condition.  He broke some bones in his face and needs surgery, but he can't have it yet because he is having respitory problems.   Please send prayers his way.

 

Jackie W

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I asked if anyone thinks I am doing the best thing by going on Yervoy as the cancer is getting worse. I am scared about the side effects. BUT HAS ANYONE HAD EXPERIENCE WITH THE NEW DRUG ZELBORAF.

I need info quickly. thanks Jim

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Terra's picture
Replies 3
Last reply 9/5/2011 - 8:31am
Replies by: Terra, MariaH, jimjoeb

DOes anyone know how I can get HLA testing done in Canada I understand it is a simle blood test and I would like to get here while doing radiation before we go down to NCI so they have everything when we get there

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j.m.l.'s picture
Replies 6
Last reply 9/5/2011 - 12:30am

Please help. This is all new to me. Am I doing the right  thing in starting this treatment given the serious side effects. Operation now not possible. Had 4 prev. opeations and cancer progressing. thank you for fast response.

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boot2aboot's picture
Replies 10
Last reply 9/4/2011 - 4:51pm

 

Peptides and Montanide ISA 51 VG with Escalating Doses of anti-PD-1 Antibody BMS-936558 for Patients with Unresectable Stages III/IV Melanoma....it was recommended to me but i still can;'t figure out my HLA type...i got test results back and can't make any sense out of it...anyway, please let me know if anyone on this board is on this study and how they are doing...thank you

boots

 

don't back up, don't back down

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jmmm's picture
Replies 1
Last reply 9/4/2011 - 12:33am
Replies by: FormerCaregiver

My husband started Yervoy in May with his last dose July 5.  He had two golf ball sized tumors in May--one in his GI tract, and one near his heart.  At his 14 week scan (mid July), it showed the GI tumor gone and the tumor near his heart "dead" and half the size.  There was an area of concern in some lymphnodes in his abdomen, so we waited and rescanned last week.  The CT scan (previous scans had been PET scans, not sure if that matters or not), showed the mass in his abdomen still there, but unchanged in size.  It's in a lymphnode.  And an additional mass in a lylmphnode in his neck.  The 2 bigger tumors from May are completely gone!  We're so confused.  The Dr. thinks it's disease progression--he had a biopsy done on the neck one yesterday, but from what we've read on Yervoy, it can be a delalyed reaction.  Is it possibly that the Yervoy worked on the two tumors then stopped working and now this is new disease and the yervoy is no longer working?  Or could we wait 2 months and maybe the yervoy would work on these two tumors?  We're so confused and devastated, because we thought he was a yervoy resonder and ecstatic that it worked.  Any thoughts???  We'll get pathology report next week sometime, but we're just anxious in the meantime.  We hadn't read anything about the yervoy working so well for just a few weeks.

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Wetterhorn's picture
Replies 10
Last reply 9/3/2011 - 11:16pm

Hi all,

Been a while since I have posted, but the nerves have driven me back to the site, partially looking for answers, partially just for a little comraderie.

So, quick update on me - I was NED for 18 months until this past Feb, when I had a lesion develop in my small intestine. Had surgery to remove it and all was looking well until complications from the surgery struck with an intestinal obstruction. 3 hospital stays later, I finally had surgery again to remove a ton of scar tissue that had formed (and was the cause of the obstruction). At the time of my 2nd hospital visit, prior to surgery, a small lesion was detected in my liver by CT.

So, instead of surgery right away, I opted to go on Ipi. I go in for my last treatment on Tuesday next week and will get scanned shortly thereafter. However, this week I started having very bad headaches. They have not gone away since they started on Monday. I am scheduled for a Brain MRI tomorrow, and obviously a bit of a nervous wreck over this fearing the worst. 

Question - Has anyone else experienced headaches while on Ipi? I'm assuming headaches are a symptom of a brain lesion, are there others I should be on the look out for? I don't get results until Tuesday.

Bummed and nervous.

Wetterhorn

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rjcravens's picture
Replies 4
Last reply 9/3/2011 - 9:59pm

What can you guys tell me about these results? What does it mean if its Spitzoid type??

 

Malignant Melanoma without ulceration, at least Clark level IV.

Breslow thickness greater then 4.00mm

Mitotic rate: 3/ mm2      What does that mean????

Radial and Vertical growth are present

morphology is epitheloid........what does that mean??

Regression is absent

Microscopic satellites are absent

Neurotropism is absent

Angiolymphatic invasion is absent.

Involves deep margin

I would just like someone to tell me what this all means and be honest with me.

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