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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heg50heg's picture
Replies 1
Last reply 1/2/2012 - 5:35pm
Replies by: Erinmay22

Happy new year to everyone on this board and I hope to see or hear everyone posting in this new year.May everone keep fighting and pulling to defeat melanoma for another year. I know i am certainly going to. had clear scans at the end of december and am looking forword to being desease free untill my next appointment in march and I wish everyone here success as well. Thanks to all who have answered my questions this year when I was going through treatments.

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panda's picture
Replies 5
Last reply 1/4/2012 - 10:28am
Replies by: Janner, panda, lhaley

Hi there, could someone pls explain to me the difference  between Clarks level and Breslow Level, i am a level II something? cant find my diagnosis, so it was either clarkes or breslow? hmmm. Sorry!. anyway, my mole was about an eighteenth of a millimetre deep on my back and it has b een removed with a two centimetre margin around it. Doctor says it looks great now and i have nothing to worry about, just to come back for check ups every five months . When i went back for my check up they just looked at my moles said i looked fine and that was it... For everyone who is very sick i am very sorry for you honestly, and my problem must look very minor, but im just wondering is there anything else i should be getting done?Thankyou.

today is a gift and thats why its called the present

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JerryfromFauq's picture
Replies 2
Last reply 1/3/2012 - 1:13am

http://flipbook.insidemoffitt.com/melanomaPresentations/saturday/79%20We...

 

Anti-PD-1 antibody for previously
treated, stage IV melanoma
• PD-1 expression on CD4 and CD8 T cells is
decreased after anti- PD-1 treatment
• CTLA-4 expression on CD4/8 T cells also rose
after anti- PD-1 treatment
• These data would suggest that anti-PD-1 priming
followed by anti-CTLA-4 boosting might be useful
• In the ongoing trial of second line PD-1 antibody,
four patients have had subsequent anti-CTLA-4
• Two of the four have had major responses after
failing anti-PD-1; one CT image is shown (next)

I'm me, not a statistic. Praying to not be one for years yet.

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bdhf's picture
Replies 21
Last reply 1/5/2012 - 8:22am

Happy new year!  On Dec 13 I was told I had a brain tumor after about 2 months of ongoing headaches.  I thought I had the flu.  On Dec 14 I had a craniotomy to remove the tumor and pathology determined it was melanoma.  I had a primary melanoma in situ in 2007 after the birth of my first child.  I had a second baby just 6 months ago.  I am trying very hard not to connect these things with the pregnancies.  My oncologist says that there is no connection.  Nonetheless, I am working through this slowly trying to figure out our next steps.  I understand that there is more diagnostics to do as they want to verify the node on my lung is not a tumor and a ultrasound of my thyroid as well.  Opthamology exam to make sure my eyes are clear and SRS (gamma knife) to the tumor bed in my brain to get any residual cells.  I am just in shock I guess.  After thinking that there was only a small chance this would ever come back (2-5%) and then to wake up one day and be told I have a brain tumor and stage 4 melanoma was a huge shock and complete life adjustment.  I have been to every dermatology follow up, had lots of other moles removed/biopsied with negative results.  I just don't understand how it happened quite like this.  I have my boys to think of, my husband has been great through all this but I am scared of what the future might hold.  So far, things look good but the scary statistics and stories that are out there don't make it easy.  

I hope there are others with stage 4 on this board that can help me to keep up the faith and hope that this can be beat for the long term and that I will have a long life with my boys!  Best of luck to you all and happy and healthy new year!!!

Brenda

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TracyP's picture
Replies 4
Last reply 1/1/2012 - 11:15am
Replies by: Janner, TracyP

Hi all and Happy New Year!

 

I am most grateful for this resource and appreciate you sharing your experiences.

I know I am lucky, my melanomas were all caught early.  Still does not make it any less terrifying or panic me about the future.

To start I was diagnosed with my first melanoma 10 years ago...it was on the underside of my forearm, a simple freckle that itched.  I was pregnant at the time so I asked my ob who said to have it looked at by a derm.  Since I did not have one at the time I went to a friend of mines father who diagnosed it as in situ and excised it.  He really made no to do about it...no follow up was scheduled. (He was a much older doctor and before google was a verb)

I just recently had surgery on December 16th to remove a .75mm, clark's level III from my left breast, also a melanoma in situ as well on my left breast, a SNLB under my arm and four additional biopsies on my right breast.  I recently got the results and my margins are clear, SNLB negative and biopsies clear with exception of one being atypical.

A few question and sorry they are all over the place:

Is it odd that I had two melanomas so close together (geographically and time) and on a non sun exposed area?

I am horribly paranoid that the beast will return, how do you cope with that being in the back of your head all the time?

What else should I be doing proactively for my care.....I have met with a surgeon obviously...but couldn't originally get in with a derm in an appropriate amount of time so had a general doctor biopsy it for me and sent me to a surgeon.  Do I need to meet with an oncologist?  I do have an appointment with a new Dermatologist next week that was recommend to me from a woman I met locally that had melanoma.

Also my surgeon recommended genetic counseling.  I do not have contact with my father or know much about that side of the family except my grandmother died of cancer, but do not know what type.  Is there a benefit to genetic counseling/testing for melanoma?  My dr mentioned that a small percentage of melanoma is familial and that type can has a high incidence pancreatic cancer.  Thus would be beneficial to know so I could have yearly testing to monitor signs of that.

Thank you for any info or feedback :)

TracyP

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boot2aboot's picture
Replies 6
Last reply 1/2/2012 - 8:14pm

Hi to All taking Zelboraf and those who research MM, especially Michael, Charlie, Gene, Dick K and Jimmy B.,

I am currently ending my 4th month of Zelboraf treatment.   I saw the onc and had my second set of scans.  The GOOD news is that my tumors have shrunk 40% and my bloodwork looks good...I have one tumor in my liver measuring .6X.9cm (was.8X1.3 in OCT).  I have one tumor in my spleen which was 1X1cm(was1X1.5 OCT) i have 4 lung mets? nodules the largest being 3m (no change from OCT)... So i would say i had a 40% reduction in my liver and spleen mets...not bad considering i am on a GREATLY reduced dose of Zel due to severe side effects....i was advised to start searching clinical trials because Zelboraf usually quits working after 6 mos...I will head down to Moffitt and consult with Bowtie Guy...

Here are my questions

1. is surgery for liver and spleen met a smart way to go? ( the only reason i ask is i have one tumor in each organ and they are small)...but i have no idea what the recovery time will be...and that would be important because i could have no treatment during this time...the lung mets are too small to biopsy and they might not even be mel...but, of course, i will claim they are...because they might be...for stage 4  trials...

2. If i do surgery can i still get into anti-PD1 trial? or will that boot me out?

3. If i do surgery should i consider IL-2 instead of PD1?-the only reason i ask this is because IL-2, although it works in 5% of peeps seems to create NED in those it does work...

4, is any science guy out there currently on to finding a way to target other pathways like CTL4, ect?  Just HOW many pathways is there anyway? other than Braf Mek pathway, PD-1, CTL4?????

4.instead of anti-PD1 should i consider MEK trial (since i am Braf +)

Happy Melanoma Free and New EFFECTIVE TREATMENT 2012 everyone...We lost a lot of Great People this year and i don't want to lose anyone else , including me to MM.

Boots

don't back up, don't back down

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jmmm's picture
Replies 4
Last reply 1/9/2012 - 2:48pm
Replies by: Tiko, Charlie S, Cooper

We are going to travel from St. Louis to Chicago (about a 6 hour drive) for a consult and hopefully a trial. If my husband qualifies, we'll be heading up there every 2 weeks or so. How do people afford to do this? We checked with the American Cancer Society and they have a hotel we can stay at for $50 a night..no Hope Lodge, Joe's House, etc., plus $57 parking per night. So, we're talking $250+ per visit with gas and food. With no income at this point, we're not sure how we'll be able to afford it. I'm sure my mom will help us out, but we're wondering if there are other resources that might help with gas, food or lodging.

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Lauri England's picture
Replies 2
Last reply 1/1/2012 - 1:35pm
Replies by: MariaH, SuzannefromCA

In the middle of October 2011 sometime I got this small lump under my skin between my colar bone and neck area.  For a long time I thought it was a pimple that I could not get.  That is why I did not say anything to my Onc.  Now it is the last day of December 2011 and the lump is still there and a little bigger.  It is the same color as my skin and is somewhat numb when I try to pinch it.  It is a hard lump that I can grab onto.  It is a little smaller then a pencil eraser.  I am going to call my derm and schedule an appointment to have it looked at and see what he says but I wanted to see if anyone else experienced anything like this.  It is on the same side as my original melanoma.  On the right side. The original melanoma spoke was only about 3 inches away.  Kind of nervous.

Don't sweat the small stuff. There are bigger fish to fry!

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Roxy1453's picture
Replies 12
Last reply 1/5/2012 - 9:51pm

I had my second infussion of Yervoy Dec 29. I started having stomach problems and diarrhea on Mon. Dec 26. It has gotten a lot worse since treatment. Onc told me to take Imodiam to help. It has helped some but every time I eat ( I'm trying to eat right) it goes right through. Has anyone else had this problem and what did you do that helped?

Thanks,

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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    Basically we are not a generic "community" as most Bulletin boards have.  We are the "MELANOMA PATIENTS INFORMATION PAGE" community.   The history of the MPIP predates the formation of the MRF.  The MPIP is a Memorial to Jeff Paterson and his wife's sister, Cindy.
     The MRF does a great job of fund raising and supporting research for the fight against melanoma.  The MPIP is not a fund raising entity, we are a group of fellow sufferer's trying to help each other on a personal, compassionate and informational level.  We need the MRF's help, and the fact that the MRF is now supporting the MPIP should be a benefit in their fund-raising.  The first new format  seemed to have forgotten the personal approach of the MPIP and concentrated more on the commercial fund raising side of the MRF.  After complaints nd requsts the MPIP history information was included in the MRF write up

        Cindy was diagnosed with melanoma approximately Nov 1995.  Jeff set out to find everything he could about this dreadful disease.  What he discovered was that there was a great deal of information available on the internet, but it took him hours and hours to find it. He decided to put everything he could find on one "page" so that Lori Paterson's family could access the information more easily.  Unfortunately Cindy passed away  in August, 1998.    Jeff's efforts continued. What now is known as the MPIP - complete with a bulletin: board and chat room - is the result of Jeff literally spending : thousands of hours writing computer programs and researching melanoma.   His labor, which has been helping tens of thousands of patients, caregivers and their friends worldwide, outgrew the ability of one person to support it properly and the MRF agreed to continue and enhance this fabulous site to assist patients on a personal level.

Jeff Patterson's MEMORIAL SHOULD NOT BE PUSHED ASIDE AND MADE TO APPEAR AS A TRIBUTE TO AN Astronaut's WIFE.   
     Jeff allowed others involved in the struggle against melanoma to use his site and continued the site at his own expense and time for many years to be a chat room and social room and information site for melanoma individuals.

Last year the MPIP history information was included in the MRF write up.  This was appreciated.  Now it has again been removed!  

                                                                                                         WHY?

I'm me, not a statistic. Praying to not be one for years yet.

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bella001's picture
Replies 5
Last reply 5/24/2012 - 1:08am

Hello!

 

I was dx w/ stage 1 Melanoma is 2004.  I had a WLE and have been NED since.  Last year I learned I have Celiac.  After doing a ton of research on that I'm finding more and more info about a much higher Melanoma rate among Celiacs.  It's relating it to a vitamin D problem.  Anybody else have Celiac or gluten intolerance and also Melanoma?  Just curious if I'm unique or not.

 

Thanks!

 

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Lilylove414's picture
Replies 16
Last reply 1/5/2012 - 9:59pm

Ok, I'm getting anxious about treatment! My appointment is Jan. 9th to go to UVA and talk to my doctor about starting Interferon. I don't know how all stages work, all I know is at stage 3, they don't give you many options! He said wait it out, which seems more like a death sentence to me! I could do a clinical trial, but who knows if they'll work, so it didn't take me long to choose the feron. I've decided interferon is too long, so now it's the feron. Anywho, I have 12 months of it and I am aware of the blood tests and liver tests. But I do have concerns.

For instance, will I go bald? I have a fairly lumpy head, and no one needs to be subjected to that! Am I going to be the only 25 year old I know with saggy skin from the freak weight loss I've heard about? I don't need to look like I can jump off a roof and take flight. But the initial thought of weight loss doesn't bother me! I'm a chunky monkey....so bring it on!

Yesterday I just had a baby melanoma (in situ) removed from my back. Smidge sore back there!

One more note! I can't seem to figure out how to delete my first post since it caused a little...conflict. I would like to apologize to Tim, because I was being very irrational. I don't like upsetting people. I simply took it the wrong way and flipped.

Well thanks for listening...or reading. Have a great New Years everyone and stay blessed!

Jaimy

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

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Miss Nancy's picture
Replies 4
Last reply 12/31/2011 - 11:20am

Hello everyone,

I was diagnosed Stage IIIA Melanoma (left foot) following the excision and sentinel lymph node biopsy (SLNB) surgery performed on Oct. 24th. They had removed 2 lymph nodes and one proved positive for micro metastatic melanoma (C-kit). The excision had clean margins and the PET scan was clear. My original surgeon mentioned having a complete lymph node dissection (CLND), but did not push it. She said treatment has come a long way and that it was not necessarily the norm now.  My oncologist recommended 1 year on interferon as my only option.  I live near Orlando and my plastic surgeon recommended that I check out Moffitt in Tampa, so I set up an initial consult. They were pretty insistent on me having the CLND and told me that the cancer drug treatments would be useless without the surgery. At the same time, they thought I should sign up to be in a trial study that compares the outcomes of patients who have the surgery versus those that don't have it. So I guess they have their doubts too! 

Since the melanoma was on my foot, a plastic surgeon grafted "Integra" (bovine collagen) to provide padding where the shoe will rub. This was performed during the same surgery as the excision and SLNB. Then, he performed a second surgery for a skin graft about 3 weeks later. 

For the past several years, I have been experiencing edema in the feet, legs and ankles and was prescribed a water pill. Since the first surgery, my left leg, foot and ankle are significantly more swollen from fluid retention than the right foot. This is with only 2 lymph nodes removed. Unfortunatley, the fluids are draining through the excision and the skin graft is spotty at best from being saturated. My plastic surgeon said that we should prep to do another skin graft and referred me to the wound care unit at a local hospital to clean and prep the site for the graft. They think that the graft will fill in if I use a wound vac and compression stocking. They suspected this would take about a month.

Based on the swelling, I decided not to have the CLND at Moffitt. They then asked if I would consider taking part in the study and I said no because in the study I couldn't choose whether to have the surgery or not. They called me back a couple of days later and recommended a  sonagram be done in mid to late January and if anything was found, a needle biopsy performed at that time. It's pretty clear that they have no intention of treating the cancer unless I permit them to do the surgery first. I'm feeling a bit abandoned by Moffitt.

A friend recommended MD Anderson here in Orlando and I took a tour and was very impressed. I set up an appointment, but couldn't get in until Jan. 6th because of the holidays. I'm interested in hearing what they have to say.

Has anyone else elected not to have the lymph nodes removed? I have found studies on the internet comparing outcomes of those who did have the sugery versus those that don't. The summaries stated that there was no significant difference between the two groups and that further studies would be needed. I hope I'm not making a mistake, but I just cannot imagine having my entire leg swollen.

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Miss Nancy's picture
Replies 2
Last reply 12/31/2011 - 11:24am
Replies by: Miss Nancy, Rona

Hello everyone,

I was diagnosed Stage IIIA Melanoma (left foot) following the excision and sentinel lymph node biopsy (SLNB) surgery performed on Oct. 24th. They had removed 2 lymph nodes and one proved positive for micro metastatic melanoma (C-kit). The excision had clean margins and the PET scan was clear. My original surgeon mentioned having a complete lymph node dissection (CLND), but did not push it. She said treatment has come a long way and that it was not necessarily the norm now.  My oncologist recommended 1 year on interferon as my only option.  I live near Orlando and my plastic surgeon recommended that I check out Moffitt in Tampa, so I set up an initial consult. They were pretty insistent on me having the CLND and told me that the cancer drug treatments would be useless without the surgery. At the same time, they thought I should sign up to be in a trial study that compares the outcomes of patients who have the surgery versus those that don't have it. So I guess they have their doubts too! 

Since the melanoma was on my foot, a plastic surgeon grafted "Integra" (bovine collagen) to provide padding where the shoe will rub. This was performed during the same surgery as the excision and SLNB. Then, he performed a second surgery for a skin graft about 3 weeks later. 

For the past several years, I have been experiencing edema in the feet, legs and ankles and was prescribed a water pill. Since the first surgery, my left leg, foot and ankle are significantly more swollen from fluid retention than the right foot. This is with only 2 lymph nodes removed. Unfortunatley, the fluids are draining through the excision and the skin graft is spotty at best from being saturated. My plastic surgeon said that we should prep to do another skin graft and referred me to the wound care unit at a local hospital to clean and prep the site for the graft. They think that the graft will fill in if I use a wound vac and compression stocking. They suspected this would take about a month.

Based on the swelling, I decided not to have the CLND at Moffitt. They then asked if I would consider taking part in the study and I said no because in the study I couldn't choose whether to have the surgery or not. They called me back a couple of days later and recommended a  sonagram be done in mid to late January and if anything was found, a needle biopsy performed at that time. It's pretty clear that they have no intention of treating the cancer unless I permit them to do the surgery first. I'm feeling a bit abandoned by Moffitt.

A friend recommended MD Anderson here in Orlando and I took a tour and was very impressed. I set up an appointment, but couldn't get in until Jan. 6th because of the holidays. I'm interested in hearing what they have to say.

Has anyone else elected not to have the lymph nodes removed? I have found studies on the internet comparing outcomes of those who did have the sugery versus those that don't. The summaries stated that there was no significant difference between the two groups and that further studies would be needed. I hope I'm not making a mistake, but I just cannot imagine having my entire leg swollen.

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Rona's picture
Replies 4
Last reply 12/31/2011 - 12:16pm

I have been going back and forth with my local ONC to get a treatment that will stop my mets coming back so frequently.

I have had 11 surgeries since March 2011 to remove spots. I have been on DTIC and it is not doing the job. But.... my ONC is so scared of the side effects of Yervoy he won't even consider it. So, I harassed him into refering me to the learning university in AR. I need to convince this doc (if he will see me) that Yervoy is the next step. 

I don't want to be on DTIC for the rest of my life and still have surgeries. Geez, is that to much to ask....

 

I need your advise on what I should say. 

 

Rona

This chica is Yervoy bound...

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