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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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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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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naty's picture
Replies 9
Last reply 11/3/2010 - 6:38pm

We are in West Michigan we I am looking for a recommended physician or treatment center in the region.  It is for my father who states he is wanting to travel if that is what it takes.  He wants to fight the best possible fight.  He had an oncologist at Spectrum Health and we did go to U-M and they offered only radiation to the head for 2 weeks and then temedor.   Where's a good place to start trials?  Karmanos in Detroit?  We are open to suggestions as my dad has just started his fight with stage IV.  Please share your thoughts.  Thank you!

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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
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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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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mrsmarilyn's picture
Replies 5
Last reply 11/2/2010 - 11:07pm

Hi!

My brother Gary- who has been on GSK - BRAF 2118436 inhibitor at Sara Cannon - was asked by GSK to speak at their  Philiadelphia HQ - on Friday.  It was a worldwide teleconference - speaking regarding his 60% reduction in 9 months.  They gave him a tour- top secret - and all the researchers were so happy to meet a real live person with such success.

Lots of good things - happening at GSK - he is so happy!

Best of luck to all.

MrsMarilyn

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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 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 10
Last reply 11/2/2010 - 8:49am

Hi All,

My husband is Stage IV, but is on a trial that seems to be working... his next CT scan is this coming week. I can tell it's helping, his pain is less, and his energy is up.

But he's on a new drug combo that really has no statistics yet... it's a shot in the semi-dark, so it's hard for both of us to look forward since we don't know how long it will work or even if he is a partial or full responder.

So my question to all of you is, how do you keep your spirits up? how do you keep looking to the future and planning a future with your loved ones?

How do you stay positive, and agressive? Even if a treatment doesn't work?

We're both positive people but the last few months have been incredibly tough and even now I'm fighting tears as I write this.

Any advice would help. Especially since on Friday we'll know if this drug combo is working or not.

 

thank you,

Emily

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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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ipi in DC's picture
Replies 11
Last reply 11/1/2010 - 6:10pm

Hey Everybody,

Just got back into town from my scheduled scans during Ipi/ temador trial. As Jim I was enrolled in the trial in August, we are on the same weeks. The scans showed an  aprox. 25% decrease in all lung nodules and the nodule on lower back has decreased by atleast  half.

I also feel so lucky to be responding to the treatment, but yet guilty because so many others are still working so hard to find something that works for them or the same trial and not responding. It makes me very humble to be so lucky, (why do I get to respond and not everyone else).

I agree with Jim that we are not out of the woods yet, but it was so nice to have the staff come in smiling with good news. There is still a long way to go and a possibility of more side effects that can be very nasty. I do have a major rash that started the first infusion but has increased each infusion. The rash went nuts the 4th infusion and a constant itch over my intire body that just seems to walk from one spot to the next. It really seems to go nuts in the middle of the night. Unfortunately Benadryl doesnt work for me and never has. The Hydroxyzine seems to take the edge off, and I have found that Green labeled Gold Bond lotion and powder seems to be the best for me. The lotion makes you feel like your freezing cold until it dries.

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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Andrew Langsford's picture
Replies 11
Last reply 11/1/2010 - 11:25am

I have had DCIT recommended to me by an oncologist. He said that after 2 doses he can tell whether it is taking effect or not.  Has anyone had this advice, or a good experience with DCIT?  The ipi would be the next thing, but it has come with a warning of drastic side effects to the bowels, anyone experience this?

Thanks for any help and experience.

 

Andrew

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mrsmarilyn's picture
Replies 9
Last reply 11/1/2010 - 4:08am

Hello-Everyone.  Just want to say my brother Gary is at his 9 month mark on GSK Braf-all METS almost gone.  Even one on his lung.  He has been invited to speak at a group of researches in Nashville-based on his progress.  How is anyone else out there doing on GSK Braf?!  He was asking me to share the good news and see what the progress is of anyone else out there.  Before he went on GSK Braf- Mets were going out of control.  He will continue on - and my best wishes to all - thank you again for any feedback!  Feel free to email direct.

MrsMarilyn

Sister of Gary (Stage IV)

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brownie's picture
Replies 8
Last reply 10/31/2010 - 3:55pm

I had my pet scan done at Mayo in Jax. Fla. yesterday and, Thank God, they were clear.

IIIc for a year now.

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