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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Nebr78's picture
Replies 5
Last reply 11/7/2010 - 11:23am
Replies by: jim Breitfeller, Nebr78, Jackie W, lhaley, Anonymous

I am back again.  Does anyone know how to get ipilimumab in Nebraska?  They have quit treating me as they think the chemos that will do any good will be too hard on the heart. I have had heart disease for 40+ yrs. and heart is not in good shape.  Maybe this ipil will do the job. Tumors are growing. Maybe the side effects of ipili will not affect my heart.  The FDA is taking a long time in approving it, it seems. Thanks.

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EricNJill's picture
Replies 7
Last reply 11/5/2010 - 7:43pm

Tuesday we found out that Eric has a 3CM Vascular Tumor in the brain.  Eric's Oncologist in Dayton and in Pittsburgh both recommeded surgery because the tumor is new since September 8th's scan, it's vascular, and the size.  So we met with a neurosurgeon today and she said that she wants to do a PET and if his cancer has spread out from his leg and brain then she does not recommend treating the brain tumor.  She said she's never removed a Melanoma vascular tumor in the brain and that they were rare.  She said that he would never regain his peripheral vision and may even lose all his vision on the right.  He will never drive again.  She also said that she is concerned about the risk of infection because the vasular tumors on his leg are seeping and she said that infection can spread to the brain easily when you are doing brain surgery.

Has anyone ever had surgery on a Vascular Brain Tumor.  I am so worried and feel terribly helpless.

JillNEric in OH

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mandys's picture
Replies 3
Last reply 11/5/2010 - 8:58pm

My father started taking the Ipi Trial in August.  After his 4th infusion he had unbearable itching and a rash all over his body.  His local doctor put him on some type of steroid to help with that problem.  Of course his local doctor prescribed only what MD Andersen approved of.(He is a patient there).  His last treatment was Oct. 8th since then he has symptoms of the itching, rash, white patches on skin, and now for the last 2 weeks he has been complaining of bad pain in his back, hip, & legs.  A lot of the pain medication has not really helped.  Could anybody on this board that has taken ipi or is on ipi now please shed some light on what kind of symptoms you have and how long can we expect the side effects to linger?  (Steroids have helped rash & itching)

Thanks so much!

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Carmon in NM's picture
Replies 4
Last reply 11/4/2010 - 9:42pm
Replies by: King, Linda/Kentucky, lhaley

I'm about ten daysinto the carbo taxol temodar trial I'm participating in at UNM Cancer Research Center and thought I would share how it's going in case anyone else is possibly going to do this type of study. Stage IV after two brain mets found 6/2010 (craniotomy & gamma knife) followed by an adrenal tumor showing up on scans 9/2010.

I've been lucky to have had zero nausea but they had me on a very precise supportive protocol for that. I'm losing weight but not for lack of eating! The biggest problem I'm having with food is that my taste is changing and a lot of things don't taste right. I'm making sure to keep a lot of quick and easy foods on hand so that I can eat constant small snacks through the day. Creamy soups are really great for that and still taste good.

The worst so far was day 4 and 5 of oral temodar which they warned me would cause bone and joint pain. I've never been one to get viruses or the flu so I wasn't prepared for the bone deep grating pain mostly in my hips and legs. As they also told me, it only lasted about 48 hours which helped me to get through it. Hot bathes and staying warm helped too. Now I'm dealing with neuorpathy which can be pretty intense too. For some reason it is mostly in the left side of my body and follows the major nerve meridians down my left leg. The only thing that really seems to help when it gets bad is the oxycodone I was prescribed for the intense pain I had after the adrenal biopsy.

We live at nearly 8,000' altitude so I'm also starting to feel the affects on my bone marrow with fatigue and shortness of breath. I guess it's a good thing I'm adapted to a high altitude! They told me the low point on my blood counts would occur around day 15, November 8th, so I'm already being very careful about staying away from public places and washing my hands constantly. My hair is due to start falling out then too so I'm taking a preemptive strike and a friend is coming over later this week to shear me!

So I guess my main message for anyone else is - don't be afraid! It is all very manageable. I have good friends who are coming and helping as needed but I'm still going out and feeding 6 horses every day, taking care of my house and dogs, and my husband is being a dear by helping with the cooking etc. If there were something I wish I had known about in advance, it is that my emotions would be so fragile and on the surface. I'm a very happy and optomistic person so it's a bit shocking to always be on the edge of tears. Just be prepared to be kind to yourself and for heaven's sake, surround yourself with happy, positive people! I've cut off quite a few people who insist on sharing the 'horrors of chemo' that they have read about on the net and about how many people are dying from melanoma!

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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jag's picture
Replies 5
Last reply 11/4/2010 - 9:44am

This sucks

Nothing like the efficiency of the US government.

http://www.reuters.com/article/idUSN0224943620101102

Insert Generic Inspirational Motto Here

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Ericka's picture
Replies 12
Last reply 11/3/2010 - 9:28pm

Hi Everyone,

I am new to the board.  My husband was just diagnosed with Stage IV about a week ago.  He is young (35) so this comes as a huge shock, which I'm sure it is a shock no matter what age.  We were told by the dermatologist and have not seen an oncologist yet.  That appointment is in 2 days.  Basically we were not given much information, and were told to research online.  So far I have not seen much good from what I have read.  We are kind of in the dark and do not know what to expect.  I'm really scared and not sure how to react.  I don't know what to say, what questions to ask, or what to do from here.  I guess I need some advice or encouraging words if anyone has them to give. 

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jolainajo's picture
Replies 5
Last reply 11/4/2010 - 7:49am

Hi everyone, I started my trial with Ipi, no temodor though, on Friday the 29th. Yesterday and today I am noticing my subcutaneous tumors which are large are getting larger and very very soar sometimes throbbing and hot. Is this normal?? Other side effects are just tired, Has anyone else had this?? Need some answers.. Thanks... Jolaina, Michigan

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mcallan's picture
Replies 2
Last reply 11/3/2010 - 9:24am
Replies by: mcallan, jolainajo

A little back ground - Stage three mel. Male 52yrs. Original date Jan/07left groin, localized reoccurence May/09. Completely lymphandectomy June/09

I have been on the Anti-CTLA4 trial since Oct/09. For the last couple of months, I have had this "feeling" under my right breast where I would find myself holding the area but never felt a lump or anything. I had my last clinical day/treatment at the end of this Oct. at which time I reported that I had felt small lumps under my left arm/breast area.

Onocologist said, "it could be the ippy, so we best watch it". (I don't see him for another 3 months and he is 700km away)

two weeks after seeing him, this large lump came up below my right breast (area I was holding) it came up over 2-4 days. I waited a week because I thought it could be something else (maybe being optimistic:)) then saw my dr who arranged for an ultrasound...that ball is rolling but slowly.

 

What I want to know is if anyone else on ippy has has swelling in the breast area? My lump is not hurting but now (week later) I have a very sore spot to the left of my nipple and when I breath it becomes more pronnouced. More like a big ache. The lump below is very hard.

 

Because of where I live, it only makes sense to wait til the ultrasound and then go from there. I'm just wondering what others have found.

 

Thanks in advance

 

Mike

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Anonymous's picture
Replies 1
Last reply 11/2/2010 - 11:48am
Replies by: Anonymous

E4697: Phase III cooperative group study of yeast-derived granulocyte macrophage colony-stimulating factor (GM-CSF) versus placebo as adjuvant treatment of patients with completely resected stage III-IV melanoma.

This is an ECOG study begun in 2006 to see if SQ GM-CSF is an effective adjuvant treatment in patients with resectable metastatic disease, after surgery. The primary endpoint was overall survival which at the time of the abstract’s writing (updates for ASCO are suggested in the text) was NOT met, meaning that overall the drug was not effective. PFS (progression free survival) was positive statistically but only 3 months difference.

full abstract link:
http://abstract.asco.org/AbstView_74_49374.html

 

I found this entry on a website maintained by Eric Whitman a melanoma expert at Atlantic Melanoma Center:The updated data for this trial was all negative.

E4697: Phase III cooperative group study of yeast-derived granulocyte macrophage colony-stimulating factor (GM-CSF) versus placebo as adjuvant treatment of patients with completely resected stage III-IV melanoma.

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emilypen's picture
Replies 2
Last reply 11/2/2010 - 11:11pm
Replies by: mrsmarilyn, Anonymous

Hi All,

I'm just wondering if anyone on a MEK inhibitor (spefically the GSK MEK if possible) has/had bone mets? and if so did the bone mets respond to the MEK inhibitor any differently than soft tissue tumours?

My husband has only been on the trial for 7 weeks and the soft tissue tumours are causing no pain whatsever ( and they were pressing on nerves before) but the a few of the areas where we know there are bone mets are causing some pain... so we were thinking maybe they take longer to respond?

Just interested in anyone else's experiences.

 

thanks,

Em

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/3/2010 - 2:06am
Replies by: Anonymous

Regular skin check last week, derm is concerned at "new small pink lesion with small fleck of pigment" on my cheek. Biopsy next Monday. Anyone have anything like this show up as mel? I have had two primaries, both thin (in situ and .43).

Thanks. Always nerve-wracking waiting.

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feich's picture
Replies 2
Last reply 11/2/2010 - 2:48pm
Replies by: Tad, bcl

Hello All.

I was very recently diagnosed with melanoma arising in a Spitz Nevus. However, my story is a little confusing, and I am hoping to get some answers that my doctor wasn't able to provide.

I got a slightly itchy mole removed from my back. After removing the mole, I came back in two weeks later to get stitches removed. The doctor said they had to send my results out for a second opinion. The doctor that gave the second opinion said that while the first biopsy had come back negative, an area of my mole he felt was melanoma arising from a spitz nevus. The small, nodular dermal  (slightly more than a millimeter in thickness) had melanocytes that had small uniform nuclei and finely granular pigmented cytoplasm. They formed as confluent collections forming a non maturing module.

The doctor finally concluded that based on the nodular dermal component he cannot defend any diagnosis but a tiny focus of melanoma arising in what appeared to be a pre-existing spitz nevus.

Since this was from a referring pathologist and not my actual doctor, my actual doctor didnt seem to have many answers for me. They scheduled me in for an excision but said it would take 2-3 weeks to get in. He also said they would check the lymph nodes when I went in. I will go nuts waiting 2-3 weeks to get more answers. Im just wondering a few things:

Since they don't definitevely say that I have melanoma, is there a chance this is benign and they are just being cautious? (if so I would rather be safe than sorry)

If I get it excised and it hasn't spread to the lymph nodes, will that take care of it?

Is there a large history of these changing into metastes (sp?) moles over time even if it is excised?

If it has spread, what is the treatment and or prognosis?

Does 2-3 weeks seem like a long time to wait to get in and get this taken care of?

Any help anyone could give me in terms of answers or just clarification, would be extremely helpful. Thank you all for your time.

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Anonymous's picture
Replies 2
Last reply 1/19/2011 - 4:42pm
Replies by: W., amandak

Hello All.

I was very recently diagnosed with melanoma arising in a Spitz Nevus. However, my story is a little confusing, and I am hoping to get some answers that my doctor wasn't able to provide.

I got a slightly itchy mole removed from my back. After removing the mole, I came back in two weeks later to get stitches removed. The doctor said they had to send my results out for a second opinion. The doctor that gave the second opinion said that while the first biopsy had come back negative, an area of my mole he felt was melanoma arising from a spitz nevus. The small, nodular dermal  (slightly more than a millimeter in thickness) had melanocytes that had small uniform nuclei and finely granular pigmented cytoplasm. They formed as confluent collections forming a non maturing module.

The doctor finally concluded that based on the nodular dermal component he cannot defend any diagnosis but a tiny focus of melanoma arising in what appeared to be a pre-existing spitz nevus.

Since this was from a referring pathologist and not my actual doctor, my actual doctor didnt seem to have many answers for me. They scheduled me in for an excision but said it would take 2-3 weeks to get in. He also said they would check the lymph nodes when I went in. I will go nuts waiting 2-3 weeks to get more answers. Im just wondering a few things:

Since they don't definitevely say that I have melanoma, is there a chance this is benign and they are just being cautious? (if so I would rather be safe than sorry)

If I get it excised and it hasn't spread to the lymph nodes, will that take care of it?

Is there a large history of these changing into metastes (sp?) moles over time even if it is excised?

If it has spread, what is the treatment and or prognosis?

Does 2-3 weeks seem like a long time to wait to get in and get this taken care of?

Any help anyone could give me in terms of answers or just clarification, would be extremely helpful. Thank you all for your time. 

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scots's picture
Replies 13
Last reply 11/7/2010 - 9:12am

I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

Pet/CT -clear, WLE - clear margins, SNB - neg,  melanoma 3.7

My oncologist has suggested interferon(1 month high dose, 11 month low dose) and radiation.  I have an appt. with the radiation oncologist on Thursday to discuss treatment.  I'm suppose to start interferon next Monday.  This has all happened so fast, so many questions.  Has anyone had any experience with goning through both treatments at the same time? or what order you went through both treatments.  After reading about interferon on the bulletin board I'm wondering if I can do both.

 

Thanks

Scot

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Drew N's picture
Replies 6
Last reply 11/1/2010 - 10:47pm
Replies by: jag, Drew N, Anonymous, BethA in VA, Jim in Denver, lhaley

I was diagnosed Stage IV in November 2008 (lymph node right groin), after a malignant mole was removed (May 2006). Everything's been cool since then, but they were watching some spots on my liver... they never changed, but still. MRI a week ago ID'd them as nothing, blood work is good, and Xrays are good.

I told the nurse at MDA that the longer I hold out, the better I feel about a discovery that will give me a chance if there's recurrence. And in the meantime I keep knocking back the curcumin. She agreed (with all of that) and told me there's more and more on the horizon.

Keep the faith, y'all.

 

Drew

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