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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Lisa13's picture
Replies 24
Last reply 2/4/2012 - 11:08pm

Today, I had my brain MRI appointment to see the gamma knife procedures I had 2 months ago. 1 is gone and the other one is shrinking - so it's good news.  They found 2 small mets today which devastated me, so I have an appointment on Monday to get gamma knife done again. They really want to send me on WBR, but after reading the webinar on Melanoma International, I'm sticking with their opinions. I had 2 and they're gone, so this other 2 will hopefuly go away as well. Every 8 weeks, I'll see what comes up and may be lucky to only have 1-2 more arrive for awhile.  You just don't know. 

I'll also be starting ipi again as it shrunk 50% and even some disappeared and now all of a sudden they have marginal growth. My lymphocytes are back up to 1900, so if it can do the job shrinking again, it could also work it's magic inside my brain.

I'm terrified, but I have to believe that sometmes brain mets don't come all the time. I've met numerous people (mostly woman) who had 2-3 and have been hear for 3 and some 5 years.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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chermes55's picture
Replies 2
Last reply 1/29/2012 - 12:58am
Replies by: LynnLuc, washoegal

Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since. A week before Christmas I got the news that there were two new metastasis on my liver seen in my early Dec. Pet scan. My oncologist decided at that time to take me off the interferon. She then prescribed me zelboraf. Before my insurance would approve it I was offered the chance to join a trial at moffitt cancer center in Tampa with Dr Jeffrey weber. The trial is for gsk's alternative to zelboraf (braf inhibitor gsk2118436) in combo with a mek inhibitor gsk2110212. I started my meds on 1/25/12 and on my fourth day. The only problem I have had so far is dealing with the fasting twice a day for 4 hrs each time. I decided to take my pills at 10:30 so from 8:30 to 12:30 I cannot eat. Slowly deciding that this might be the best time most days. I will try to keep my side effects and result updated. This drug combo has been having great results compared to zelboraf alone including decreased side effects. We will see in the weeks and months following.

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chermes55's picture
Replies 12
Last reply 1/31/2012 - 3:30am

Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since. A week before Christmas I got the news that there were two new metastasis on my liver seen in my early Dec. Pet scan. My oncologist decided at that time to take me off the interferon. She then prescribed me zelboraf. Before my insurance would approve it I was offered the chance to join a trial at moffitt cancer center in Tampa with Dr Jeffrey weber. The trial is for gsk's alternative to zelboraf (braf inhibitor gsk2118436) in combo with a mek inhibitor gsk2110212. I started my meds on 1/25/12 and on my fourth day. The only problem I have had so far is dealing with the fasting twice a day for 4 hrs each time. I decided to take my pills at 10:30 so from 8:30 to 12:30 I cannot eat. Slowly deciding that this might be the best time most days. I will try to keep my side effects and result updated. This drug combo has been having great results compared to zelboraf alone including decreased side effects. We will see in the weeks and months following.

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LynnLuc's picture
Replies 1
Last reply 1/28/2012 - 9:20am
Replies by: Laurie from maine

Finally...I added a simple page to update my website letting folks I am still alive! I am working on a new website ( same name) gentlewinds . org

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Shelby - MRF's picture
Replies 2
Last reply 6/9/2016 - 2:56am
Replies by: Shane740, DonW

Hi everyone,

I was informed today that the Chat Room had been down for quite some time.  We were not aware of the situation and I apologize.  It is now back up and running.  Sorry for the inconvenience and as always, please feel free to contact me (smoneer@melanoma.org) when issues like this arise.  Have a great weekend!

Shelby - MRF

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Lilylove414's picture
Replies 9
Last reply 1/28/2012 - 9:22am

I had my surgery yesterday. I checked in at 7:45, and at 8:30ish they called me back to prep me. Very different from Lewis Gale. At Carilion, there's a big nurse station facing a semicircle of beds separated by curtains. Of course that's where I had to strip down. I was worried someone would see me naked, and sure enough one nurse opened the curtain to get my urine sample. I didn't even try to cover myself at that point I was just thinking, " Well at least I'm not as big as I used to be!" Haha, so I put on this thick paper gown that attaches to a hose that heats it up. Pretty awesome until it makes you look HUGE!

I was pretty nervous and at first my blood pressure was 142 over...something. but the heat in the gown helped me relax and it went down to 114 over 70. This super nice anetheseologist came in and gave me something to calm me down. It made my vision blurry but I was grinning from ear to ear! So after my family wished me luck they rolled me on back there and I remember saying something kind of sarcastically and then I was out.

After I woke up, holy Jesus I was nauseus! I never threw up but I had a close call. I had the hardest time staying awake until after I fell asleep at home, too. But lucky me gets to wear a drain until Feb. 7th. I have decided not to see any friends until it's gone. It grosses me out, I'm sure they don't want to see it sticking out of my pocket at dinner.

Well now I'm pretty sore, a teeny weeny bit nauseus, but hoping this is my last cancer related surgery! Thank you everyone and God bless!

If God is for us, who can be against us?

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Kellie-T's picture
Replies 7
Last reply 8/5/2012 - 2:47pm

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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Kellie-T's picture
Replies 0

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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Kellie-T's picture
Replies 0

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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Vermont_Donna's picture
Replies 6
Last reply 1/29/2012 - 10:32am

Hi everyone,

I became friends with Bruce in NH from this board as he and I shared the same fantastic melanoma oncologist at Dartmouth Hitchcock Medical Center. I had last heard from him late fall, and I wrote to see how his treaments were going early this January with no response and then again yesterday. His wife Karen wrote back and said:

"I'm sorry to tell you that Bruce died on Dec 10.th He went peacefully at the end and it was very quick.  He had had a 12 year battle with cancer and was taking treatments even to the end ! He is greatly missed by all of us but is in a much better place.
I have not turned off his phone yet but my email is keyboardwoman @ Comcast.net ..
Sorry to be the bearer of sad news".
 

In an another email to me Karen asked me to post this news to the MPIP board and said I could post her personal email address above for anyone who cares to write. She may or may not check this board but I thought in case she doesnt I will cut and paste any posts here and forward them to her.

I know that I for one am just devastated with once again such sad news of one of our melanoma friends dying. I think so often of Sharyn, NicOz, Val, Eric, and many many others that have died from this horrendous cancer.

With much sadness,

Vermont_Donna, stage 3a, NED

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vickykay's picture
Replies 10
Last reply 4/25/2014 - 9:33am
Replies by: kattyp, buzzbindaas, Linny, Anonymous, raok7, tuneseo

Hi everyone, just wanted to know if anyone out there has diabetes after taking Interferon. I only had 3 weeks of high dose,and one day of low. But I have found that my blood sugar will not go back down to what it was before Interferon. My fasting blood sugar was 104 before my treatment, and now it is 130. I really don't want to start meds for diabetes, but may need to if I can't get it back down. I walked 4 to 5 miles aday before I had surgery, but now because of lymphedema in my leg, I can only walk about a mile. I know that sometimes blood sugars will go up with Interferon treatment, but they come back down when you stop treatment. It has been three months and no change. My hair has stopped falling out now, so maybe I should wait awhile longer to see if my numbers go down. Dr. app. next month, so will know better what to do about diabetes them. Just wanted to see if any one elsa had this problem.       God Bless everyone in this group is my prayer !

              

Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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CCarolina's picture
Replies 7
Last reply 1/26/2012 - 4:47pm

Hi everyone,

I am probably just being paranoid, but I recently had two mole biopsies, and one came back as severely atypical and the other one came back as moderately atypical.  Last time (5 years ago) I had a moderately atypical mole my dermotologist re-excised the punch biopsy.  This time I only had a shave biospy, but this derm only wants to conservatively excise the severely atypical mole (1mm) and not do anything with the moderate one (which is on my back where I can't see it).  In addition, from what I can tell from the pathology report (thanks to everyone who posted on this blog, I realized it was somethingIi should request tosee!) it looks like the pathologist couldn't for sure rule out melanoma.  Anyway, I was just wondering if times have changed and my new dermotologist's stance is the new normal treatment for severe and moderate atypia?

Here's what the pathology report says:

1.  Junctional Lentiginous dyspastic nevus with severe atypia.  There is a junctional and lentiginious poliferation of melanocytes with a marked degree of melanocytic aytipia.  There are occasional small microtheques.  Individual cells focally extend upward into the epidermis as single cells in a pagetoid pattern.  The underlying dermis has fibroplasia and lymphocytic host reponse.  There are scattered macrophanges.  This pattern borders on early evolving melanoma in situ but is not diagnostic in this specimen.  There is fibroses in this nevus so that it is difficult to determine whether some of the atypia is related to the dysplaia or whether some of these changes may represent a recurrant or persistant nevus effect in a previously traumatized melancytic nevus.  The margin sin these sections are so close to the lesion that I cannot assure you that the lesion is removed.

2.  Dysplastic compound nevus with moderate melancytic atypia.  Melanocytes are present at the junction and within the dermis.  There is an aberrant architecture with associate stromal fibroplasi and a lymphocytic host response.  Upward growth of single cells is not conspicuous but there is moderate atypia of the melancytic cells.  The margin is sufficiently close that I cannot assure oyu that the lesion is removed.

Anyway, I am probably just being paranoid, but I would appreciate any advice you can give!

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Hi everyone,

I am probably just being paranoid, but I recently had two mole biopsies, and one came back as severely atypical and the other one came back as moderately atypical.  Last time (5 years ago) I had a moderately atypical mole my dermotologist re-excised the punch biopsy.  This time I only had a shave biospy, but this derm only wants to conservatively excise the severely atypical mole (1mm) and not do anything with the moderate one (which is on my back where I can't see it).  In addition, from what I can tell from the pathology report (thanks to everyone who posted on this blog, I realized it was somethingIi should request tosee!) it looks like the pathologist couldn't for sure rule out melanoma.  Anyway, I was just wondering if times have changed and my new dermotologist's stance is the new normal treatment for severe and moderate atypia?

Here's what the pathology report says:

1.  Junctional Lentiginous dyspastic nevus with severe atypia.  There is a junctional and lentiginious poliferation of melanocytes with a marked degree of melanocytic aytipia.  There are occasional small microtheques.  Individual cells focally extend upward into the epidermis as single cells in a pagetoid pattern.  The underlying dermis has fibroplasia and lymphocytic host reponse.  There are scattered macrophanges.  This pattern borders on early evolving melanoma in situ but is not diagnostic in this specimen.  There is fibroses in this nevus so that it is difficult to determine whether some of the atypia is related to the dysplaia or whether some of these changes may represent a recurrant or persistant nevus effect in a previously traumatized melancytic nevus.  The margin sin these sections are so close to the lesion that I cannot assure you that the lesion is removed.

2.  Dysplastic compound nevus with moderate melancytic atypia.  Melanocytes are present at the junction and within the dermis.  There is an aberrant architecture with associate stromal fibroplasi and a lymphocytic host response.  Upward growth of single cells is not conspicuous but there is moderate atypia of the melancytic cells.  The margin is sufficiently close that I cannot assure oyu that the lesion is removed.

Anyway, I am probably just being paranoid, but I would appreciate any advice you can give!

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bruski1959's picture
Replies 9
Last reply 1/31/2012 - 7:23pm

Jackie is scheduled for her first melanoma treatment with Yervoy on Friday morning at St. Catherine's Cancer Center. This is of course dependent on the Yervoy being shipped to the cancer center. The oncologist office called yesterday afternoon and said they had spoken with the pharmacist at the speciality pharrmacy and that the Yervoy was in the process of being ordered and shipped. We will get a call if it looks like the Yervoy will not be there tomorrow. We could reschedule to later Friday or Saturday. Otherwise it would need to be the week after next, as I am commuting to Schaumburg next week for a class for work. They want me to be there with Jackie the first treatment and they don't want her to drive after the first treatment until they know how she will react to the Yervoy. The first visit will take 2.5-3 hours, as they will be taking a picture of her port. Also they will give her some preventative medication prior to giving her the Yervoy, which is apparently standard practice for cancer treatment infusions. Its been over 2 months since Jackie's melanoma advanced to stage 4, and we think its important to get the treatment started, as we have seen the melanoma continue to spread. Jackie seems to be doing okay with the port, just having some minor discomfort which seems to be diminishing with time, and she takes pain medication if necessary. Please continue to pray for us, as we enter into this treatment phase. Please pray that Jackie can tolerate the side effects, that the medications we have to treat any side effects make the side effects manageable, and that the Yervoy shrinks the melanoma tumors!

Thanks :)

Bruce and Jackie

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It's been a very long time since I've posted last...mainly because I've been out living life.  But recently, I've developed pain under my right arm but with no apparent lymph node swelling.  In 2004, I had a full axillary disection on the left arm, and have been NED since 2005.  I've read that there is a relationship between Melanoma & Lymphoma and am a litle concerned.  Does anyone have any experience with this? 

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