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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Anonymous's picture
Replies 16
Last reply 2/12/2012 - 3:18pm

Hi ! Thank you all for being here and sharing information .I am glad I found this forum.

I was diagnosed with melanoma Breslow 2 mm and Clark's II , margins clear on my right breast last month. I am worried my doctor said  My wide excision and SNB will take plase in march only ( will be 3 months since mole removed!!!!!!) Is it normal or it will spread all around my body during this long time???

And another question - I know Clark is ot so popular ow ,but ayway it does mean something and how is it possible to have such a thick ( 2 mm) melanoma and only Clark's level II ?????

Do I have any chances to survive that??

I am only 31 ,newly married and wanted to have children .

Thank you for all your support and I wish you all the best

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natasha's picture
Replies 9
Last reply 2/12/2012 - 10:18am
Replies by: Lauri England, SteveBMe, natasha, Minnesota, Anonymous

I am so glad I found this website. I was diagnosed with melanoma last month .I am 31 ,I still don't have children and I wanted a child. No looks like everything is ruined.. Please , answer if you know - do I have chanse to survive with 2 mm thick melanoma and Clark II , margins clear on my breast? I cannot sleep and I lost my hope..  I am in UK and doctor said I will have my Wide Excision and SNB only next month (they are busy0,so it will take 3 months since mole removed !!!!!!!

I do know Clark's not so popular now ,but anyyway it does mean something and I cannot understand how is it possible to have such thick tumor (2 mm) and only  Clark level II?

Please ,colud you reply on my post with some information ,.

Thank you for beeing here and sharing your stories.

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

Good evening all.

Well, it is now officially 8 years since my last recurrence (February 10, 2004 since my last surgery), and I cannot tell you how good it feels.

I remember coming here (the old BB format) in the middle or end of February 2004, to tell how I barely made it through my last surgery, and how sure I was I would be dead in some 18-36 months.

I just had my latest, now annual, scans-- whole body PET, and an MRI of the brain. I received the reports in the mail yesterday, and I am clean!!!!!!

In talking with someone at the local diagnostic radiology clinic the other day, they told me that more and more people are living longer, and actually surviving this nasty hate-monger-- MM.

While I've yet to meet any of them, it sure is nice to know....

Hang in there.... Hope exists.

Jesus lives!!!

Follow Jesus. That way, even if you do die, you'll live forever in paradise with the One Person who loves you enough to have died for you, and rose to conquer death so we can be justified before God.

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Maxximom's picture
Replies 2
Last reply 2/9/2012 - 4:21pm
Replies by: Maxximom, washoegal

I was supposed to have my first Ippi treatment today. I reported to the James Cancer Center early and found out that Medicare still had not approved my treatment. I was really furious that no one called me to cancel yesterday or this morning. They were very appologetic and rescheduled foor next Thursday. I was so geared up for today's treatment. I felt so bad that my daughter dropped me off and then had to come back to get me. Another week of waiting while this monster grows inside of me.

Joan

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annem's picture
Replies 5
Last reply 2/11/2012 - 8:14pm

My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnormal thickening of the brain at the back of his head.  The neuro is sending the MRI to the onc but tells me right now he is calling it an abnormal thickening of the dura - he says it may or may not be new disease.  He asked me if I had thought about hospice.  This has thrown me for a loop.  Although my husband has been unable to talk and had obvious comprehension issues, he knows me, he knows the kids, watches his beloved Okla State cowboys ... I told the doctor my main concern is that he not be in pain.  I'm not sure what this means but didn't know where else to turn.  I haven't posted here in a number of years but I always got great comfort in the discussions and suggestions.  Hopefully, someone will have dealt with this issue and can offer some advice.  Thanks.  AnneM, caregiver to husband, stage iv

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emilypen's picture
Replies 11
Last reply 2/10/2012 - 5:21pm

 

Just wanted to check in to announce the birth of our son Jamieson . Feb 3rd at 11:37 am via c-section ( baby was breech. 6 lbs 12 ozs at 37 weeks and 1 day.

Hospital was amazing in accommodating my husband with his wheelchair and my mom and caregivers... he got to be in the OR and held the baby before I did!

It seems like Jason has been saving all his energy to make it to the delivery date and now he is relaxed and letting nature take it's course. I'm sure it won't be long now but im so happy i got to share the last 5 years of my life with and that we got to create a new life together.

Emily

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justlittleoleme's picture
Replies 2
Last reply 2/10/2012 - 8:10pm
Replies by: fdess056, rbruce

My hubby finished his fourth ipi induction infusion yesterday.

The tumor testing came back and he is braf wild type.  Help me know what this means to us.

I think it means that there are no immunotherapies out there now that would help.  He has scans again on the 24th of February.

They are keeping watch on something in his left parotid now.  It is currently 6mm.  They aren't sure what it is.

Of course, they tell us the likelihood that he would get melanoma bilaterally in his parotids is highly rare.  I think that is where we live!

barb

We don't know how strong we are until being strong is the only choice we have.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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