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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deardad's picture
Replies 12
Last reply 1/11/2012 - 5:24pm

Dads 4th month results on Vemurafenib show tumors are continuing to shrink.

We can breathe until the next scans.

Dad has lost a lot of hair, almost all his body hair, very thin on top and almost all his eyebrows and moustache. He still has joint pain, but has energy. Certainly hasn't lost his sense of humor. We go with the good and worry when we have to. 

My heart goes out to all.

Nahmi from Melbourne

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bdhf's picture
Replies 6
Last reply 1/12/2012 - 10:15am

Question for you all...so far the only treatment discussed with my oncologist is radiation (SRS).  We are still in the diagnostic phase, trying to determine if "nodes" in my lungs may or may not be tumors.  Brain met was removed (3 cm) on 14 Dec.  If there are no further mets I am wondering if they will do anything more than the radiation.  I have a new oncologist but she doesn't want to see me until after the biopsy on my lung.  So, I am in this limbo land as I wait for the consultation appointments then the real procedures with the pulmonologist and the radiation oncologist.  

Any thoughts or inputs would be greatly appreciated!  Thanks!  

Brenda

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HelperDaughter's picture
Replies 1
Last reply 1/10/2012 - 4:25pm
Replies by: Kelli100299

An update.  My mom had the resection on her small bowel.  My mom's surgeon told us that the tumor was the size of an apple and three pathologists (or three labs - not sure which) were fighting over it.  He said they were going to see if there was anything they could do for her based on the tumor.  I'm hoping he means looking to make a tumor vaccine, since we already know my mom doesn't have any of the "good" mutations.  I didn't exactly press for this info, though, because thinking that there's a bunch of paths out there looking to help us leaves the door of hope open in an otherwise grim situation. 

So my mom is trying to get back on her feet - surgery was four days ago.  She felt great Day One after surgery (all the pain meds, probably), and like hell days 2 and 3.  She looked a little better yesterday, and I did not get to see her today.  Her kidneys were apparently being stubborn, however, and she put on like 10 pounds of water weight that they are giving her Lasix to take off.  She was only like 104 lbs prior to surgery (and 5'2" - teeny tiny, but about 20 lbs short of her usual plump self). 

My dad said she slept most of today because the Lasix makes her tired.

Anyway, my mom's nausea and vomiting is gone, and the bleeding from the tumor has stoped.  Her bowels are starting up again.  Her hematocrit is stable, which means no internal bleeding.  All very good things. She's on an unrestricted clear fluids diet, and hopefully will advance (and put some of that weight back on - I can't help but see how skeletal her face looks).

I found out my mom had cancer in July 2011 and went shopping with her then.  I didn't get back to see her until October, at which time she was too sick from the bowel tumor to do much of anything. 

I just want to go shopping with her again - just one time.  Please, let this be the trick.  She has to get a little luck.  Her tumors did not shrink on ipi, the brain mets make her ineligible for the trials, and she doesn't have any mutations that anyone's studying, apparently.  I'm encouraged that the surgeon apparently thought she had enough left in her to make this rather difficult surgery worthwhile.  the melanoma specialist, however, told her not to do it and, basically, to keep being miserable, nauseous, vomiting, tired, bleeding internally and taking 2 units of blood each week just to keep her head above water blood-wise until she died.  Sorry, but that's the long and short of it.  He recommended Temodar instead of surgery.  he said it had a 10% chance of reducing the tumors and a 50% chance of keeping them stable.  that's worse than a coin toss.  But, the surgeon said he recommended the surgery, and deep-down, we felt it was right.  Maybe it's just a "cut it out" mentality, but I don't see how removing a tumor the size of an apple can NOT improve the situation.  bulk-wise, it's literally removing probably 2/3 of the cancer from her body.

My thoughts are with everyone tonight.  I see that some people have lost loved ones around the holidays.  I'm grateful i got to spend christmas with my mom and i'm hoping for another.

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Ginseng's picture
Replies 2
Last reply 1/11/2012 - 10:28am
Replies by: Phil S, FormerCaregiver

Hi all,

Six years ago  I had a mole in my right thigh removed along with a sentinal node biopsy. The biopsy indicated micro metastisis to the sentinal node. I opted to have my superficial nodes removed. None had disease and the rest of my body was clean as well.

I underwent roughly two years of interferon treatment. I remained clean until now.

Now I am scheduled to have a two by one centimeter subcutaneous nodule in that thigh (appr. two inches to the right of the original mole) resected in two days. My Pet/CT indicated no other melanoma spread beyond the nodule.

I am looking for advice on post-op treatment because I know I need it to deal with any possible residual melanoma cells. I have read many comments in the forum from people who clearly know much more about the immunology and science of the options than I do. I am happy with my oncologist but I respect the experience and knowledge of those commenting here. I would appreciate any and all help!

Thanks, Sue

 

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Julie in SoCal's picture
Replies 7
Last reply 1/10/2012 - 5:43pm
Replies by: Julie in SoCal, Anonymous, TracyP, lhaley, SuzannefromCA, Lori C

Hello Friends!

Please break out your happy dance shoes and do the happy dance with me!  I had scans today and I am now officially 3 years NED!

I don't post often (only if I have something new to say) but this site has been a huge blessing and encouragement to me in my journey.

Wishing NED to all of you!

Julie

Stage 3a, WLE, SNB, LND, HD-INF, GM-CFS

Stage 4  (TXN2cM1a)-- WLE, SNB, LND, HD-INF, GM-CSF, (intransits) IPI, (intransits) PEMBRO. Currently NERD!

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robbier's picture
Replies 2
Last reply 1/9/2012 - 10:30pm
Replies by: Charlie S

Went today for the second opinion to UAB in Birmingham, saw Dr. Conry at Franklin clinci, and for now he states I don'thave to do interferon alfa chemo therpy.  Yippee,  Will be followed and go for the testing PET/CT scan every 3 to 4 months.  Seems I am in remission and the cancer can not be found , and I thank God for this.  So now I start the program of taking tests, and letting the Doctors follow me.  Excited about the fact that there is no cancer at this stage . 

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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Mrsgkr's picture
Replies 3
Last reply 1/16/2012 - 7:40am
Replies by: FormerCaregiver, Mrsgkr

Hello everyone. My husband had surgery on December 8, 2011 to remove a malignant melanoma (stage 3) from his abdomen. He also had two lymph nodes removed from his left groin. He developed an infection in the incision where they removed the lymph nodes. The infection has cleared but he also has what the doctor refers to as 'tape burn' at the site of the same incision. He has been using Silver Sulfadiazine on the burn twice a day since December 10. His doctor says it looks better but to us it doesn't look like it is getting any better. Not sure what to do.

Another problem is that he now has no energy. He was doing really well the first two weeks after the surgery now suddenly his energy is gone. We also brought this up to his doctor, who said it's normal. My husband is a landscaper and pre-surgery he was so energetic the only time he ever stopped was when he went to sleep. This has both of us confused and him very worried that there's more going on. 

I have done a lot of searching on the internet for lack of energy after surgery, but nothing that touches on what he's experiencing.

If anyone can give a little insight, or perhaps someone to speak with, it would be very much appreciated.

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mob's picture
Replies 2
Last reply 1/16/2012 - 6:04pm
Replies by: bcl, mob

http://www.doctoroz.com/videos/dr-joe-mercola-s-health-recommendations-pt-2 

 

And the salons are noticing an increase in tanners already  -     http://www.tantoday.com/forums/news-about-tanning/45206-dr-oz.html

Here is a link incase anyone wants to write to the show

 http://www.doctoroz.com/contact

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Tracy Chicago's picture
Replies 4
Last reply 1/9/2012 - 3:08pm
Replies by: mantonucci, Sherron

My friend's father is on hospice at home and his poor wife is having a terrible time managing all of it. Hospice told her that she needs to administer her husband's morphine on the hour (24 hours a day)! How is she supposed to get any sleep? And the nurses are supposed to call her to tell her who the next nurse is that is coming, and they don't call her. They sent a "nurse" to sit with her husband through the night but the "nurse" is not licensed to administer the morphine every hour so what good is she?  Also the pharmacy hospice works with has screwed up his medications by not delivering them on time (in fact they admitted they never filled his prescription even after she call to ask about it several times). Hopsice is pushing her to move him to their facility but she promised her husband she would let him stay home and she is not willing to break her promise.

Is there any advice you have for my friend's mother? Is there someone she could complain to so that hospice steps it up? This poor lady is so tired and feels like she is getting nowhere.

 

Thanks,

Tracy

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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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