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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eerye70's picture
Replies 8
Last reply 5/31/2012 - 1:46pm

Panic, insanity, anger, fear,  I have been through so many emotions these few months I don’t know what to say.

In the fall of last year, I had a small mole on my right shoulder. I had it since I can remember. It got darker. I got worried and scheduled an appointment with a dermatologist. I have moles all over. My mom has moles. I am just speckled. I also have to say, as a teen, I totally did the sitting out with baby oil and iodine for the perfect tan. I didn’t do tanning beds until the last two years. I have several scars on my stomach and I wanted them to fade into one shade. So I did insane tanning, daily, 20 minutes for about 3 months total out of the two years. Back to fall. I went to the derm. He took one look at it  and said, oh yeah, that has to go. They cut it off and sent it to path. He said, its most likely nothing, but we send it to pathology and I will see you back in two weeks. Then I left. I went home and began to hit the internet. I found this site and began doing research. My mole was larger than an eraser, irregular borders, irregular coloring, and evolving or changing. I couldn’t believe that I had just ignored this thing for years. Literally for years. I had noticed it, thought about it and just went on my merry way. For years.

Well, the dr calls and says, come in to see me. Of course, you know. You don’t get a call for nothing out of the ordinary. I guess the good news is that it is in situ. That for all my putting off, it is supposedly been caught at the surface, most superficial level. But they don’t know, and can’t know, if it didn’t send off some little buggers in the body to take root some place else. The likelihood is that it hasn’t and that when they went back and removed it with the clear margins etc etc, is that it is gone forever. But then, well, being me. I did all this research. I see the people who started out as in situ and it returned. I am furious that there is no way to keep track of this thing at this stage. I hate that there is no monitoring for this other than seeing my derm regularly. The likelihood of it returning in another mole being so small, it seems insane. I don’t know. Am I crazy? No blood test, no xray, no nothing. How do I know I am not going to be in the percentage that it returns? There seems to be nothing I can do to reduce the chances. I hate that I have no control. I hate that I have this evil little monster lurking in the back ground. Did we cut all of him out, or is he still hiding, waiting for when my immune system is down on its luck and pounces on me?

Why exactly, if this friggin cancer so darn deadly, is there so little research money being spent? Why on earth is this some big collosal secret? Why isn’t someone going into our high schools, before proms telling these kids, tanning beds can kill you? I don’t know. I am ranting. I am raving. I am upset. I don’t sleep. I can’t eat, I obsess over this day and night. I have read every single post on this board and I have come to “know” so many warriors. I cry over the sweet, smart, funny people that are gone and I think, these beautiful people are gone. And while we are all the luckier for having been in their orbit, but I should have never known of these people, they should be happily going about their lives. I don’t want to imply with my part about tanning beds either, that these people brought on their cancer either, because I know that sun and uv is only a part of the ugly truth. There are so many more issues and I am angry that we don’t even know those either!

So thank you for reading my introduction to me. I guess I have a lot of “issues” to work through. I plan on being more verbal now and less lurking. I need to get this out of me, to process these emotions, to offer support and give encouragement and just try to return to a new normal. One day at a time…

Time to put on your big girl panties and deal with it!

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robbier's picture
Replies 1
Last reply 2/9/2012 - 10:19pm
Replies by: FormerCaregiver

Well its time again, and I am sure that when everyone has the PET/CT scan I for one get tired of all the test, I realize that the test is because of the  Stage III melanoma, that doesn't mean I still enjoy going and doing that test.  I go next week on Feb 15th for my first scan of this year.  The Dr. told my my cancer is in remission and I still thank God for this, and realize that according to Dr.s  they require the testing.  Oh well, once this first year passes, then the PET/CT Scan  won't be every 3 to 4  months.  My wish is everyone continues to do well and  to be encouraged.  I realize that sometimes its hard to encourage people when one is going thorugh the same thing, But that takes courage and faith.  The courage to stand in the face of fears, and the faith it takes to help others inthe same situations or simaliar situations.    I would like to leave all of you with this, Psalmas 120:1  In my distress I cried to the Lord, and He answered me.  God does hear and helps us if we will allow  Him to do help us and be our champion. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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I met with my oncologist yesterday to get the results to my second follow up scan after Yervoy. This scan again showed growth of the tumor in my adrenal gland. It now measures 9.1 x 7.1 cm. Last November Melanoma metastasized to my ovary and that was removed. Since then, I have had IL-2, been on the MDX-1106 trial, and completed Yervoy this past November. The adrenal tumor has been present since the ovary was removed and that is what they have been using as the basis of if the treatments were working for me.
 
Other than the adrenal tumor, I have a few spots in my lungs that are questionable. I've had two nodes in the hilar region before that were biopsied and were not Melanoma. The spots I currently have have never been biopsied, but the doctors have always just worked under the assumption that they are Melanoma. During the last year, while undergoing these immotherapies, the spots in the lungs have remained stable and some of them have shrunk. So, it's still hard to say if they are anything or not. But, it could also stand to reason that they are Melanoma and the treatments have been working on them, but not the adrenal tumor.
 
The most recent scan also shows a 2.3 x 4 cm mass next to the pancreatic head, which is very suspicious for a met.
 
I am BRAF negative. Since I have done all of the standard treatments, and I am experiencing side effects due to the size of the adrenal tumor, it has been decided that now is the time to remove it surgically. We meet with the surgical oncologist on Friday. We are also going to ask about having him remove the mass that is showing close to the pancreas.
 
The plan after surgery will then be CT scans every 3 months. So, if the spots in my lungs aren't really Melanoma, there's a chance I could be NED after surgery, but we won't really know. I also had one brain met that was treated with SRS last August. The first MRI after that came back clear. The next one is a month from now. So, fingers crossed that the next brain MRI also is clear!
 
Have any of you ever had your adrenal gland removed due to Melanoma? I've done some reading online and there are several ways that they can cut you open to remove the adrenal gland and sometimes it can be a rather large incision, especially when there is a large tumor they are removing. I'm not sure if mine would be considered large or not. I'm guessing that it would considering they say the size of a normal adrenal gland is about the size of a walnut, and mine is close to the size of an orange. Eek.
 
~Angela
Be kind, for everyone is fighting a great battle. -Plato

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Replies by: FormerCaregiver
I met with my oncologist yesterday to get the results to my second follow up scan after Yervoy. This scan again showed growth of the tumor in my adrenal gland. It now measures 9.1 x 7.1 cm. Last November Melanoma metastasized to my ovary and that was removed. Since then, I have had IL-2, been on the MDX-1106 trial, and completed Yervoy this past November. The adrenal tumor has been present since the ovary was removed and that is what they have been using as the basis of if the treatments were working for me.
 
Other than the adrenal tumor, I have a few spots in my lungs that are questionable. I've had two nodes in the hilar region before that were biopsied and were not Melanoma. The spots I currently have have never been biopsied, but the doctors have always just worked under the assumption that they are Melanoma. During the last year, while undergoing these immotherapies, the spots in the lungs have remained stable and some of them have shrunk. So, it's still hard to say if they are anything or not. But, it could also stand to reason that they are Melanoma and the treatments have been working on them, but not the adrenal tumor.
 
The most recent scan also shows a 2.3 x 4 cm mass next to the pancreatic head, which is very suspicious for a met.
 
I am BRAF negative. Since I have done all of the standard treatments, and I am experiencing side effects due to the size of the adrenal tumor, it has been decided that now is the time to remove it surgically. We meet with the surgical oncologist on Friday. We are also going to ask about having him remove the mass that is showing close to the pancreas.
 
The plan after surgery will then be CT scans every 3 months. So, if the spots in my lungs aren't really Melanoma, there's a chance I could be NED after surgery, but we won't really know. I also had one brain met that was treated with SRS last August. The first MRI after that came back clear. The next one is a month from now. So, fingers crossed that the next brain MRI also is clear!
 
Have any of you ever had your adrenal gland removed due to Melanoma? I've done some reading online and there are several ways that they can cut you open to remove the adrenal gland and sometimes it can be a rather large incision, especially when there is a large tumor they are removing. I'm not sure if mine would be considered large or not. I'm guessing that it would considering they say the size of a normal adrenal gland is about the size of a walnut, and mine is close to the size of an orange. Eek.
 
~Angela
Be kind, for everyone is fighting a great battle. -Plato

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MeNDave's picture
Replies 2
Last reply 2/8/2012 - 9:07am

Dave has an appointment on 2/22 to see how he is doing on the Temodar.  While it has kept him "stable", there was a slight increase on the last scan of existing tumors.  There are no new tumors however.  His onc wants him to do one more round, and then move on to a an anti-pd1.  I believe the one they are looking at is MDX-1105 (which I never heard of, only the MDX-1106).  Due to the eye issues he had on IL-2, he won't even put Yervoy on the table.  I'm not sure I agree with that, since there is no guarantee that it will happen again, and it was corrected with steroids.  However, Dave agrees with him, so I have to respect his decision. 

Has there been any study reports released regarding any of the anti-pd1s?  Or does anybody know if one is showing to be more effective than others?

Any info would be appreciated...

Best wishes to all,

Maria

Don't ever, EVER, give up!

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/11/2012 - 6:34am
Replies by: Anonymous, Mike N, dian in spokane, MeNDave

Looking for opinions....I have been 5 plus years ned. Stage 3 male, with one large lymph node found under arm. I am on yearly follow ups and due for my next appointment in July. I've had intermitten night sweats in the past month or so (6-8 times). I feel great and have no other symtoms. Do I wait and see or contact my Doc?? Oh ya...one more thing....I had night sweats before my original diagnosis.....

Thanks for your help!

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VANCOUVER, BRITISH COLUMBIA, Feb 07, 2012 (MARKETWIRE via COMTEX)

-- Health Canada has announced its approval of Yervoy(TM) (ipilimumab) to treat metastatic, or advanced, melanoma. It is the first new treatment for the disease in more than a decade, and is the only medicine proven to significantly extend the lives of patients living with the disease. Melanoma is the deadliest form of skin cancer and one of the fastest growing cancers in Canada.

 

Best regards,

 

Jimmy B.

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Anonymous's picture
Replies 3
Last reply 2/8/2012 - 10:02am

I am writting as the daughter of a melanoma patient and am looking for advice as this is all new to me..

In Oct 2008 there was a skin lesion on left arm that was removed Skin lesion was previous birth mark that started changing.  In Nov 2008, another surgery was completed to get clean borders and such a plastic surgeon assisted with surgery.  Lymph node testing came back clean. She was classified as stage 2.  Life continued as normal.  All checks up til now were good.

In Dec 2011 at year 3 check dr felt lump in armpit, ultrasound and biospy showed melanoma.  Brain MRI, PET scan and CT came back clean.  4 weeks ago surgery took out  21 lymph nodes in left armpit, only 1 tested positive and it was big, but intact.  She is now stage 3, but not sure where in stage 3.  We have now been referred to oncology for further treatment.

Met with oncologist a few days ago, and we will meet radiation specialist in a few days...  Oncologist had 3 choices: 1. wait and see 2. interferon 3. Yervoy clinical trail.

Does anyone have advice or suggestions with what we should do.... I have done a lot of looking online and found this to be an informative board.. 

We are in the Southern CA area in Orange County.  My mom is 70, in excellent health and active.

Thank you

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Maxximom's picture
Replies 11
Last reply 2/13/2012 - 4:25pm
Replies by: Anonymous, Maxximom, yoopergirl, justlittleoleme, Gene_S, jmmm

Hello to all of you. I am a new member here and posted about 10 days ago for the first time. I am newly diagnosed with Melanoma in my left lung. I have never had any skin lesions of any kind. I had a CT scan for a totally different reasson and a mass was discovered in my lung by chance. At first it was thought to possibly be lung cancer and I had a core biopsy done and the pathology report came back as Melanoma. Since the lung is almost never the primary source..and all skin checks are clear.. they have no idea where the primary may have come from. I am seeing a Melanoma specialist at the James Cancer Center in Columbus OH. I have been told surgery is not a option. I am still waiting for my B-Raf test to come back..but Dr Kendra feels stronly that the Ippi is my best option. What can I expect at this first treatment? When do side effects usually kick in at the first infusion.?.or will the side effect get  greater with each treatment...or is it a really an individual thing? I am sure that some of my questions will be answered on Thursday..but I would like to hear from you..; who have been there..done that..Friday is my 81st Birthday.. I never expected to have to face this at my age..but I have always been a fighter and I want to kick A$$ and be around for a while and see my Grandkids grow up.Thanks for any help. Keep Fighting!

Joan

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cutaway's picture
Replies 2
Last reply 2/8/2012 - 3:31pm
Replies by: washoegal, LynnLuc

Recently diagnosed with Metastatic Melanoma. Primary site was not found. I had found a lump growing in my left armpit (Auxilla). Was referred to a surgeon for removal. Lump was removed and biopsied and found to be Melanoma. I was then referred to a surgical oncologist. On Jan 11 he removed all the Lymph Nodes from my left auxilla. 30 nodes removed and 13 have Melanoma. I have had CT scans and ultra sounds. There were no other spots detected.

I now have appointments with a radiation doctor and chemo doctor. I have to decide what forms of treatment I want to follow.

What I am looking for is to find out what treatment works best and what to stay away from. I am looking for some good advise.

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 Does any one know the status of a young woman featured on a Discovery Channel & network news as a patient with a great response to her melanoma. Beeive she was from the midwest and was in  a trial with the drug Zelboraf.Been trying to see how she has been since she has been on the drug for a while. Thank you

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 Does any one know the status of a young woman featured on a Discovery Channel & network news as a patient with a great response to her melanoma. Beeive she was from the midwest and was in  a trial with the drug Zelboraf.Been trying to see how she has been since she has been on the drug for a while. Thank you

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Kelli100299's picture
Replies 14
Last reply 2/10/2012 - 9:23am

Hi MRF Family  –

Just a question. I had the WLE/SNB done on 1/24/2012. The WLE was done on my inner thigh, and node removed from my groin. I would think at this point (2 weeks out) I would no longer be sore. The groin area is pretty swollen, like a huge egg under the incision, with pain going down to my knee. I guess being sore is kinda norma, however, this lump has me concerned. The WLE area is still sore as well. I am sure it doesn’t help that I irritate the area all day by sitting at a desk, but just to walk is painful, almost feels tight. No oozing or anything, so I am not thinking infection, but how long does the soreness, swelling and pain last? I have a follow up with my surgeon tomorrow.

Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

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Ann from Iowa's picture
Replies 3
Last reply 2/7/2012 - 5:56pm

Is it possible for melanoma to spread from one part of the body to the eyelid?

My husband is Stage IIIB and had recurrance to one lymphnode in axilla area two years ago, a 5 cm. node with extranodal extension.  No problems since but also has a condition called LyP which comes and goes.  About 3 weeks ago he got a nodule on his eyelid  which he assumed was a stye but it did not hurt but has not gone away.  He now has another in the other eye on the eyelid.  He went to his local eye Dr., only a Dr. for glasses. and he said it could be a Chalazia which is a fancy word for eyelid infection.  He put him on an antiobiotic and he will go back in two weeks.  The nodules are hard and do not hurt.  Just wondering if he is o.k. to wait until his regularly scheduled appt. with oncologist at the end of March to check this out if it does not resolve with the antiobiotic.  From reading about the LyP condition it sounds also like you can get lymphoma of the eyelid too.  We are not really too worried about this at this point but was just wondering if melanoma can spread to the eyelids or if anyone has had any experience with this.  Thanks for your help.   

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Minnesota's picture
Replies 6
Last reply 2/7/2012 - 1:18pm

I have completed my WLE and SNB. Both are okay, thankfully, so I assume that means I stay at stage 1B (as I learned here). No one has used a stage number for me, they say I had a T2a melanoma removed.

I have had a full skin check, and will be doing that every 3 mos. I also received a comprehensive eye exam, as recommended by the dermatologist. I'm going to make a chart with photos so I can keep a close eye on myself.

The dermatologist cautioned me against any treatment that an oncologist might recommend. He said there is no treatment (at this point for me) that would help. He said that if it were to reoccur, it would most likely be in the same location, and removed surgically.

The surgeon said I could meet with an oncologist to see what he/she might recommend, but it would probably be nothing. I told her what the dermatologist said, and then she said she agrees that it would be okay with me not meeting one also. I asked her if I should have any scans. She said something like, "finding something on a scan before it presents itself does not change prognosis." So, no, to scans.

As I understand it, we don't have melanoma specialists in Minnesota, and my insurance doesn't allow out-of-network coverage to go out of state. There is an oncologist who works with more melanoma patients. I think his name is Thomas Amatruda, MD.

So, my questions are:

Is it important to meet with an oncologist now?

Is there any type of test/scan I should be requesting or that should have been offered to me?

Thank you

Persistence (sometimes) Prevails When All Else Fails

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