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 4
Last reply 1/10/2012 - 8:23pm

2 months ago, I had 2 brain mets gamma knifed. Both were in areas that wern't in a problem area, but the 2.5 cm one was kind of close to a movement area.  Anyway, I've had no symptoms and have my first brain MRI this Thursday. I started noticing my right hand is feeling weird - just maybe a tad bit weak, but I'm still able to do things with it.   Now, if my brain is swelling which apparently it does after gamma knife, would this also explain the symptom considering it's near the movement area?  Should I email the radiologist and ask if I should go in now??  I'm freaking out a bit, but I know sometimes people get the symptoms when the brain swells.

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

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Hi everyone,

I am hopeful in this New year and wish for all of you strength,  hope and faith to help you thru this year.

I am writing to ask for help with questions I should be asking my oncologist at our appt this week.

I am 5 months on zelboraf. I had 50% reduction in lung and liver at 2 month scans.  4 month scans showed no change in lung and liver but 3 very agressive tumors had grown around abdomen and a small growth in my neck. Brain mri came back clear thankfully.    I had surgery 12/19 to remove 3 tumors in abdomen and am recovering well from that.

We go in this week to discuss where we go from here with my oncologist Dr Lawrence.  I believe his plan is to stay on zelboraf and keep controlling lung and liver and HOPE that no new tumor grow giving zelboraf time to further shrink lung and liver  He mentioned scans now once a month I believe.  THe plan is to go to ippi if lung and liver shrink and/or if it looks like zelboraf is no longer working.

I would appreciate any help in being armed with questions that I should be asking at this appt.

I had asked about PD-1 trials but was told at this time none open for me, should I be doing research myself and try to get myself in to trials not wait?

I wonder if my tumors in lung (2.7x.9cm) and liver (2.0x1.5cm segment 5/6 lesion with capsular retraction)  are too big and changing to ippi or pd-1 is not something my doctor will want to do fearing the slower response rate will give lung and liver too much time to grow?

I wonder should I be asking to get a second opinon from Sloan Kettering or NIH? even thou I believe Dr Lawrence is one of the best melanoma specialists in Boston and stays up to date with other hospitals on recent results?

I am hoping to go in and ask doctor for laymans terms of what exactly is happening in my body, seems stupid that I havent already, I just get parzlyed when in appt and try to absorb it all but get overwhelmed with whats going on and dont know what to ask.  my husband is similar to me so we both need help with this.

Thank you for ANY input, questions to ask, thing we should be considering that we havent etc.

thank you and you are all in my prayers

laurie from maine

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bekahboo82's picture
Replies 4
Last reply 1/25/2012 - 1:22am

Hi everyone.  I was reading a fellow survivors blog a few minutes ago and she stated that her doctors did not want her on Birth Control Pills because of her Melanoma (Stage 1B).   This was the first I have heard of this and of course it FREAKED ME OUT since I have been on Birth Control Pills for 10+ years.  I came off of them only to have my daughter in 2009.  My Melanoma (in situ) was diagnosed in Sept. 2009, 4 months after my daughter was born.  I am under the understanding that the concensus is that pregnancy does not cause melanoma but after the furious Google session I have just had on the subject I am now not so sure.  Neither my OB or my Derm has said ANYTHING about me needing to come off the BC Pills.  I am just confused and of course FREAKING OUT.  Does anyone have any insight?

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snett1970's picture
Replies 3
Last reply 1/9/2012 - 4:49am

My fiancee Jeff was diagnosed with Stage 4 melanoma in June.  To make a long story short he was in a truck accident in February and grew what we thought was a rather large hematoma in his armpit.  He had it surgically removed in June and was diagnosed with Melanoma.  They took out 21 lymphs with 11 of them being cancerous.  They tried radiation to no avail.  Meanwhile, another CT scan revealed liver mets that were growing rapidly.  His oncologist started him on Carbo/Taxil since he was NOT BRAF mutant. (I can't even begin to describe what a disappointment hearing that was).  He took to treatment right away with a 25% shrinkage of tumors.  He continued treatment and after his last treatment in Dec a scan showed his liver tumors were the size of a pea.  It also revealed he had some tumors in his lumbar spine.  Before he was to have another treament on Jan 2 he had another scan that told us Carbo/Taxil stopped working.  His tumors in his armpit and spine were stable, but new tumors showed up on his liver. 

Jeff's doctor is trying to get HIRSP to cover Yervoy, he is actually doing whatever he can in his power to get Yervoy.  God, I hope he can get Yervoy. His only other option would be Temodar.  Jeff is only 35 years old.  I come to this board looking for hope and to let Jeff know he is not alone fighting this beast that is melanoma.

I do have a question though. Can anyone tell me what could be causing the profuse sweating and clammy-ness Jeff has been experiencing this past week (the sweating has been going on for a little over a week now)?

 

Thank you for listening.

Sarah - Wisconsin

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glewis923's picture
Replies 7
Last reply 1/9/2012 - 6:30am

 

 

11 1/2 mths of Interferon.

now have sub. cm lung nodules that are starting to grow in size.

goin' to MDAnderson for further facts.
Went: not impressed. took over 5 weeks to give me results: I am B-Raf positive. I had to keep calling them.

Now been 8 wks. 10-22-10 had another CT-scan:
2- Lung nodule/tumor/lesions around 1.1 cm in size- one on each side of heart (paracardium) in left upper lung.
1- Lung nod/tum/lesion in right lower lung 9mm next to diaphram.
multiple other small "spots" in lungs.

Checking on trials and options and blackmarket!!....in the meantime...doing this:

Carboplatin/Taxol/Avistan via local oncologists (similar to Mayo (Rochester) Trial Ph. II Study- but without red-tape).

Had brian MRI- All clear. (11-2-10)

12-2-10: CT scan shows "stable" lung tumors. No shrinkage, but no increase! Biggest 3 still around 1 cm.

1-13-11: CT still stable Lung. BUT... foot twitches, Dr. suggests MRI:
1-26-11: MRI and next day 2nd one reveals 12 lesions in brain plus 1 wierd looking Pons "indentions" of unknown reason.
2-4-11 and 2-7-11: SRS Novalis TS performed on 5 brain tumors.

Proceed to WBRad starting 2-14-11: Happy Valentine's Day!
Completed 10 days WBR.

Started IPI compassionate use trail aroun 3-1-2011. Took standard regimine of 4 rounds IPI (which became Yervoy during my trial). Finished around 5-5-2011.

Sometime in April/May 2011 had 2 to 4 more SRS zaps (never have gotten straight answer) Radiologists say that's all they can do

Had bad edema in late July treated with steroids .

Started Zelboraf in late August 2011.
Sept. 30 2011 scans show mostly stable brain tumors; Very good regression or dissapearance of lung tumors.

Nov.18th 2011 MRI of brain revels exoanding edema is back. weighing options- started taking Temodar 350mg./day /5 days/ every 3 wks. in meantime.
Took only 1 round of Temodar as platelet level got real low AND i have planned SRS (Novalis TS) treatment- and platelets must be OK in case of brain-bleed.

After much begging and B.S.; my willing radiologist/neurosurgeon have agreed to SRS 3 relatively small new tumors. Agreed to wait on biopsy of large edema area as general consencess is that it very likely not an active tumor, but necrosis from SRS done back in Feb. or May of 2011. All simulations, mask fittings, and MRI to be done by Jan. 12th 2012. Actual SRS will take place following week.

 NOW FOR CURRENT QUESTIONS:

 

I credit the Yervoy/IPI and possibly beginning Zelboraf 3 mths. ago for my lungs to be almost clear again as of 9-30-2011 and continueing clear now!

PROBLEM:  3 new brain tumors, which they are fixing to SRS, thank God,  but a larger "old" area of tumor (aprox. 2 cm x 2.5 cm)  .  "They" cannot determine whether it is all just necrotic edema or if some  live tumor growth .  MRI and PET is not decisive enough to make call.  AFTER the 3 SRS's, can/ should i get/demand/beg to get a biopsy?  At least 1 Dr. said he'd consider it. 2 other Dr. nuerologists/radiologists seem to think i should just take lots more steroids, have "quality of life" , and basically go home and die.

 

I want to fight with all i can, i also want to consider an Yervoy/IPI re-induction,  possibly in conjunction with Temodar and/or other agents.  I will also continue Zelboraf (in 4th mth. now)  Any advice would be greatly appreciated, as i feel like the Drs. think i'm nuts for wanting to fight with so much ammo.  I do realize the odds are not in my favor, but someone has to be an exception.  I look at JAG/John and some others on here that continue to hang in there..  Please help me, and keep me realistic while optimistic, if you think its possible.

Thank You with Great Love and Prayers for ALL.   Grady. 

 

Brief history:
I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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NYKaren's picture
Replies 7
Last reply 1/9/2012 - 1:06pm
Replies by: jim Breitfeller, NYKaren, Anonymous, washoegal

Hi guys,

I had scans the last week in Dec. and they show no mel inside my body.  I'm very happy about that.

However, since my last IL-2 round, i have had a proliferation of satellites on my face.  My main area of mel is on my temple between my ear & eye.  Now there are sats up on my scalp and down my face, including my jaw and possibly my neck.

My docs and I were hoping I'd be in the Curetech anti-PD1 trial by now; Curetech won't take me at all.  ONLY Stage IV, and they don't like the fact that the site's been irradiated, even though it was 9 months ago.  Dr. W called and begged, they won't back down.

Needless to say, I'm not a happy camper.

So it looks like for now, I'll be starting Temodar and Dr. Halpern will remove all the satellites via laser, injection, or something else.  I'm seeing him NEXT monday after I see Dr. Wolchok  this coming Thursday.  Dr. Halpern has me using Aldera on half my face to see if I am responding to it versus the other half.  (It's easy to see that it worked great w/the IL-2, not so easy to see otherwise.)  It looks like there is a flattening, so that's a good sign.

Dr. W said that chemo does not have a great track record w/mel, but that he has had one patient in particular whose leg was covered in it, and he had a complete response w/Temodar.  His goal is not a complete or sustained response, but hopefully an arrest of the dermal spread.

He also mentioned my going to NIH, but right now we're trying this to get me safely to an Anti PD-1 trial w/more accepting criteria.  I guess we have a lot to talk about this Thursday.

Also, we think that I responded to IL-2 for the first round because it was right after Ipi.  I strongly feel that I was a partial responder to Ipi, and we did discuss re-induction.  

So that's my story for now.  To be continued... I thank everyone for all your support...I honestly don't know where I'd be without you all.

karen

Don't Stop Believing

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emilypen's picture
Replies 14
Last reply 1/9/2012 - 11:32pm

Hi All,

After  over 3 years of fighting this dreadful disease it's finally won the battle.

Last Saturday Jason lost any feeling in his legs suddenly and after being rushed to the ER we discovered through MRI that a tumour in his spine has compressed his cord beyond repair. With all the previous surgery and radiation there is nothing more they can do.

4 clinical trials, 2 rounds of chemo cocktails and a lot of radiation to his spine and brain and we're done.

Strangely he said, it's a relief to finally know what comes next.

My doctors are going to try and deliver our baby 3 weeks early ( first week of Feb) so he will hopefully have some time with him before he dies.

We're home now with great hospice care and spending some time together.

thanks for al your support over the last few years, keep up the fight. I truly believe that this disease will be cured sooner than we think.

 

Emily

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PhoenixJ's picture
Replies 1
Last reply 1/8/2012 - 1:29am
Replies by: FormerCaregiver

Hey fellow warriors,

I was taken off zelboraf a couple of months ago at my doc's suggestion so I could start ipi and hope for a more durable result. I am starting to get really nervous because the subq tumor that was basically gone after two months of zelboraf is now back and seems to be even larger than before starting zelboraf. I am supposed to go for my third ipi infusion this Thursday. Clearly it hasnt started to work yet and i am beginning to get worried that the ipi wont work at all. And given the size of this subq I am wondering just how large my other mets are getting. Has anyone else had what seems to be rapid growth after starting ipi? If so did you then respond later?

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Lilylove414's picture
Replies 2
Last reply 1/8/2012 - 8:17am
Replies by: scots, lhaley

So Monday I finally go back to UVA! Did I mention that I was originally supposed to go back Dec. 15th? Well poor Dr. Grosh didn't get the PET and MRI results in time. I'm not even nervous about treatment anymore, at this point I'll start in the office if I have to! My friend Matt doesn't want me to do treatment because he's going to miss me until I'm used to it. How sweet. :) Speaking of Matt, he's taking me out tomorrow for pizza. Yum!! Ok back to cancer. (Making paragraph change now)

Did y'all know that my mom's dad survived bladder cancer twice and lived until he was almost 90? Yep...he eventually died from an anuerism I think. My dad's dad died from Lung Cancer and his mom died from Colon Cancer. It wasn't surprising because they both smoked like chimneys. My mom's mom never had cancer, so woo! Apparently it runs in the family. I'm definitely the first one with any form of skin cancer. But I'm not scared anymore! I don't joke about it as much either but I feel peace.

So anywho, my appointment is at 3, and I really hope to start the same week. I even have my snuggie ready because the treatment room at Lewis Gale is freezing! I have books and coloring books. My phone with games...and...I guess my family or at least my mom will be there the first couple of times to see how it all works. I'm running out of things to say....so have a great Saturday night!

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

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renakimu's picture
Replies 7
Last reply 1/9/2012 - 4:31pm

hello all!

first of all i want to wish you to have the best year ever!!

yesterday my mum told me that she has pain under and around the armpit that she had the full lympadectomy, 

(the doctors told as tha they got out 10 lymphs, arent they few for full lnd?)also she feels at night that her breast it getting swolled, what that coulkd means?i d like to say that she dont have lemphydima in her arm.

thanks a lot for any answer!have a nice weekend!!!

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Rona's picture
Replies 7
Last reply 1/9/2012 - 2:55am

I had my apt with a melanoma Onc and, Dr Hutchins in Ar, and she did not hassitate to suggest Yervoy as my new treatment. With so much chemo experience under my belt she told me that Yervoy would be a breeze for me to tollerate. I am having a hard time believing that, but that's not stopping me from moving forward with the treatment. I am ready to move on with my life and excited to start. 

 

She told me that there were only 2 side effects that would kick me off Yervoy, Colitis and Inflamation of Hormone glans. She also said the most common side effect was itching. 

I am a full time student trying to achieve my BS and when I brought up the blurry vision or discoloration of the skin she shot those side effects down saying that they were a myth. I have struggled for 2 years taking DTIC and going to school full time. I didn't want to start Yervoy and be worrying about papers or group projects at the same time. Her suggestion was to stay in school while taking the Yervoy. 

Needless to say, I dropped my classed this semester after reading your posts. I just don't want to worry about anything but dealing with the treatment. It is very hard for me to believe that I will not be effected physically or mentally by Yervoy. 

Did your Onc tell you the same info? 

-Rona

This chica is Yervoy bound...

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Hi All,

I am 42, married, and mother of two children, a boy who is 6 and my ‘mini-me’ daughter, who is 9. I always thought one day I would join a blog or message board, but I thought it would be to talk about children, the Oakland Raiders or even work. What I never imagined was joining a message board, seeking support and answers for Melanoma, however, here I am! I was diagnosed four days ago and it changed my world. I haven’t been eating or sleeping, and have been distracted by this all day at work. Of course, I am thinking the worst and hoping for the best. I must say though, of all websites I have been reading about and poking around on, this one is the most positive, supportive, knowledgeable one out there. So thanks for having me.

I don’t have much history with melanoma, however my mom had Thyroid cancer 5 years ago, my dad had a basal cell removed from his face 4 years ago, and my aunt (fathers sister) had a mastectomy 7+ years ago. All are 60+ and come through their cancer with positive results. I have always been, should we say, concerned about skin cancer and suspicious moles within the past 15 years. I am considered fair skinned and do remember a burn or two when I was in my 20’s.  I was at the dermatologist approx 7 years ago, had a full body scan and everything was fine. About 3 years ago, I had a couple suspicious beauty mark/moles removed, sent for testing, which came back fine. Now to today, I had a mole, dark brown in color, the size of a pin head on my right inner thigh. I didn’t remember having it when I was younger, but, thought maybe it had always been there. About three months ago, it was irritating me. Never bled, but was sore. I thought maybe I cut it shaving etc. so I waited a few weeks to see if it  changed, got worse etc. which it didn't, was kinda just there.When I felt it, it was smooth and ever so slightly raised. I figured, can’t hurt in getting it looked at. Even the doctor didn’t seem concerned; however, did a punch biopsy that came back positive. Invasive Malignant Melanoma and I haven’t been the same since. Scared!  I have read a couple posts where it’s been requested to post the results of the pathology report, so here it is. Clark Level is IV, Breslow is 1.2MM, Regression is Absent, Ulceration is Absent, Mitotic rate is 1 per square millimeter, Microscopic satellites are Absent, Vertical growth is present, Vertical growth Cell type: Epitheltoid, Lymphocytic Infiltrate is Minimal, Lateral Margin is involved, Deep Margin is Involved, Re-Excision with appropriate clear margins for Invasive Malignant Melanoma is recommended. Melan-A stain is consistent with this diagnosis. So what does is all mean???

I went back to the dermatologist with these results and he just kept commenting that he was surprised because the mark was so small and that I was Stage II. He didn’t give me much reassurance and suggested that I schedule with a Melanoma Specialist (which I didn’t need him to suggest as I did that the day after I found out). The dermatologist told me that they would be doing a dye test to see if the tumor has attacked any lymph nodes. He mentioned if one tests positive they would take more and I would then be considered Stage III, then talk to me about Chemo or other treatments. He glanced over the remaining moles that I have and commented ‘normal’ – ‘normal’ – ‘normal’….wouldn’t they all be suspicious at this point?? I want them all biopsied and removed if necessary…I just don’t get why I didn’t get a more thorough exam?

I just keep thinking that I must be here for my kids. I have not told anyone in my family. The only reason my husband knows is because I wasn’t home when the doc called with results and he pushed the doctor to tell him. I really don’t think he gets the potential severity of the situation anyway. I have not told my parents, siblings or his. My parents would be devastated, they live out of state and I want them to live the rest of their lives happy, not worrying about me. I realize that there are people on this message board with more advanced, serious conditions, so I appreciate any guidance or recommendations of next steps. I continue to try and have the attitude that it is what it is and be prepared to fight for my life and family, if that’s what the outcome is. You all are in my prayers and wish we were meeting under better circumstances.

Kelli

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

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lyndaloo's picture
Replies 2
Last reply 1/7/2012 - 11:32am
Replies by: lyndaloo, lhaley

Hello - My husband had his third round of ipi last Friday.  I have tried to fill in his profile but cannot get it to work so here is a brief history, he had lung surgery last February and brain surgery in May followed with tomotherapy (targeted brain radiation) and whole brain radiation.  His scans a couple of months ago before starting ipi were ok,  a small tumor in his abdomen and several subcutaneous tumors.  His eyesight has been deteriorating for the last two months and the past week he has been getting headaches with eye pain. Because of the holidays we saw an on-call eye specialist on Monday and they said the eye looks ok but they figure it was a weakened muscle behind the eye and was probably due to the brain  radiation.  We have to see his opthamologist next week when he gets back from holidays.  I called our oncolgist yesterday and they said it is probably a side effect from the ipi and if the headaches get severe in nature and tylenol doesnt' help then to call back.  Our oncologist said to discontinue the steriod eye drops.  My husband cannot read, write or drive,  his eyesight seems to be deteriorating fast and I am worried.  We have to wait until next week to see someone but just wondered if anyone else has had this happen.  I know some people responded to my inquiry last week regarding this.  I am confused though because the eye doctor said they couldn't see any eye pressure yet they blamed it on the eye muscle.  FYI, the ipi seems to be working, all his subcutaneous tumors on his body have shrunk to nothing which is awesome!!  If there is any one else able to respond with anything else, I would appreciate it.

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Whitdonmike's picture
Replies 3
Last reply 1/6/2012 - 7:17pm
Replies by: scots, King, Lauri England

Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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