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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Dawn's picture
Replies 3
Last reply 2/6/2011 - 4:29pm

My nine year old daughter had been doing very well.  She had completed 3 infusions of ipi and things were going great.  However, two weeks ago she suffered a small bleed.  They have done multiple MRI's and cannot see well behind the bleed to see if there is a tumor there for sure or not.  The scans were read and then sent to Sloan Kettering as well.  From my discussions, they believe that they are seeing inflammation on the top of her head area where the cancer is and believe that this looking good.  They also mentioned that the bleed area may have shown slight progression but it has significantly cleared....does that make sense?  She did experience some seizures with the bleed but those are under control and she will be finishing her steroids on Monday.  They are planning on giving her the fourth infusion on Friday of this week.  She is doing well overall.  Her right side is a little weaker but she is regaining strength and mobility.  Also two weeks in the hospital doesn't help that either.  Wondering if anyone else had experienced a bleed while being on ipi?  Or any other thoughts would be helpful.  DawnMarie 

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Jan in OC's picture
Replies 2
Last reply 2/6/2011 - 9:19am

Hi everyone, 

Just got back from taking my husband to the ER.  One of the dogs accidentally hit my husband on the right shoulder and we heard a crack. This is the shoulder with the mel in it (of course).  I rushed him to the ER hoping it was just dislocated.  No such luck.  His humerus bone is shattered.  But it is the weekend, so they just immobilized it and sent him home with pain meds.  Need to see an orthopedic surgeon ASAP (on Monday hopefully).   We were due to go to UCLA this week for another MRI and SRS  for his brain.   Don't know if we will have to postpone this.   He is in a lot of pain and very grouchy.  I just want to lock myself in the closet and have a small meltdown.  When we think things can't get worse, they do!  I know, just take a deep breath and one day at a time.  But it feels very lonely here. Happy thoughts are needed!!!!

Jan, wife to Dirk (our 22nd wedding anniversary was yesterday) 

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lovingwifedeb's picture
Replies 6
Last reply 2/6/2011 - 9:13pm

After Bob’s brain surgery on January 12th it had been decided that he needed to be treated with Gamma Knife Surgery. This procedure was done on Tuesday, February 1st, it was a long process that started at 6 in the morning and we walked out of there by Noon. In the two weeks after Bob’s brain surgery his tumor had started to regrow and instead of the 1/2 hour of radiation planned his doctor decided to be on the aggressive side and treat him with 2 hours.

As this news was being delivered to me by his doctor the words - “larger after surgery” & “regrowing” kept echoing in my head. Bob was prepped and snoring in his chair ready to be rolled away for his radiation treatment. This whole morning was really frightening to me and so was this news of tumor regrowing and as everyone left the room I couldn’t hold back my tears any longer. I realized that I hadn’t really cried since last summer when I had my meltdown. This treatment was getting the best of me today and I couldn’t sort my feelings in all this craziness. Thinking back on the past weeks... one doctor saying he got all the tumor and removed all lymph nodes, now Bob is cancer free, that was in July. Then a brain tumor being removed with a doctor saying he got “most all” of it, that was in January. Now another doctor saying yes, this time he thinks he will get it all with gamma knife, this is February. We are talking 7 months... yes, I want to believe...

I find my heart tearing apart in my chest and my tears rolling silently down my face as I spent 2 hours waiting for Bob to return to me. I have to wonder would I have what it takes as Bob does to wake up each morning knowing it might not be my best days any longer.  I admire him more and more for the man he is and strives to be. He does not complain because of his diagnosis but strives to do his best with what he has been given.

I hate this cancer with every cell of my being. Since Bob’s diagnosis I have read there are a lot of patients that have learned to be grateful for having cancer. I may be just the caregiver but I feel damn close to the subject of cancer and everything I have learned so far. I am not that grateful yet. I am not sure Bob is there yet either. BUT... I am reaching in places inside myself that I did not know existed and had it not been for Bob’s diagnosis I don’t know if I could have explored myself this deeply if for any other reason. I’m sure I have a long ways to go and I don’t look forward IF this cancer road takes me there.

So, we wait until March 7th for one more test, one more deep breath.

Peace to all.

Deb

lovingwife to Bob, stage 4

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/6/2011 - 10:01am
Replies by: Anonymous, Janner

HI Everyone,

 

I wanted to post this in hopes of getting some advice and feedback as I'm a very concerened father with a pregnant wife of 12 weeks. In August of this year my wife had a malignant melanoma removed on her arm. After having that removed she went in for her PET scan a few months later and everything came back fine. Is there any effects that could harm my wife being pregnant after having the surgery and PET scan? We have a great oncologist but it all seems to weird to say everything is okay without there being any side effects that could affect her pregnancy after the surgery and PET scan. Any info would be appreciated....

Thanks,

ConcernedDad

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Debra Fahey's picture
Replies 3
Last reply 2/5/2011 - 11:01am
Replies by: Janner, Debra Fahey, lhaley

I was diagonosed with Mel in 2008, stage 1c, I had a WLE and no further treatment necessary. I do visit my derm every 3 months and they have found several basil cell carcimoma's which we treated and seem to be ok. I started to feel very fatigued a couple of months ago and went to the doctor in which she did blood work and everything came back fine. She then sent me for a MRI in which they found a mass on the liver which they cannot identify and are watching until march when I am supposed to have another scan. when they scanned my liver they saw a 4mm spot on my right lower lobe of the lung, sent me to a pulmonary doc and he did a baseline scan again and they found another 2mm spot on my left lung and a mass on my thymus gland. I never even heard of a thymus so I asked him about it and he said not to worry that we will just watch it and in 6 months rescan.  I left there feeling very confused so I came home and researched this and from what I gather is scarey. I think I want a second opinion and not sure of what to do at this point. I have a spot on the right and a spot on the left lung and now a mass on the thymus gland, my nerves are shot and I hate the waiting game.

I can't change the past but I can have control over my future and I don't sweat the small stuff.

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lhaley's picture
Replies 11
Last reply 2/7/2011 - 10:20pm

I posted the other day that I had terrible numbers on my blood work. I retook the blood test yesterday and they were greatly improved.  Lesson learned was no erythrimycen and zocur at the same time!!! 

Meanwhile was scheduled for a bilateral mri today. I have never had claustrophobic issues before but today was a disaster. I had to have them pull me out of the machine. They did it differently this time and they basically put my breasts in a vice type of contraption and there was no mirror where I had my head faced down.  As they were moving me back into the tube my feet hit the walls. That was it......  I'm rescheduled in a few weeks at a different institution, maybe it will be done like I used to have it in Myrtle Beach (I would travel for the test but we just rented our house), I think I'll also take something before the test to calm me down.  They told me that it's the only MRI that has you on your stomach.

Cystoscopy on Tuesday and PET/CT the following Tuesday to see what the lung nodule is doing. 

Linda

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Drew N's picture
Replies 4
Last reply 2/5/2011 - 10:34am

The liver mets issue got dismissed late last year, which was great. Early in January during a routine derm check, the intern thought he felt a lump. I told him I thought it had been there; doctor said to keep an eye on it. Which I did, and a few days later made an appointment to be seen by my surgeon. I was still thinking scar tissue and maybe a little lymphadema. The surgeon's PA thought so too, but ordered an U/S, which was negative (for what that's worth). So last Monday on a regular checkup with my onco, he said I really needed a CT, and told me another patient had passed the U/S but had a bad node clear down in his back.

I'm a pretty calm, living in the moment kind of guy. But I'm in a fairly important stage, career-wise, with a lot going on and more transitions coming up, and I just was a mess the rest of the week. Wasn't scared, but mad that I might need more biopsies or surgeries. The CT yesterday was a barium fueled delight. This morning, due to weather, there was a skeleton crew at MDA in radiology, but I did get a call from my onco's nurse at 1pm saying that everything was normal.

While I don't drop in here very often, I wanted to share. I'm IIIb since December 2008, when a bad node was pulled; a month later I had 22 more pulled and all has been roses ever since. I take 2K mg of curcumin a day, and go to a lot of checkups at MDA, but mostly don't think on cancer too much. That's why I was surprised at the force that it grabbed me with.

There's not a point to this posting, although I suppose it's always good to read about someone with no recurrances for 2+ years. I needed to write this out. My wife is very supportive, but ultimately much more scared than I am that this might kill me, so there are some places I can't go with her.

Well, we may be done freezing in h-town tomorrow, and I'm going to put down 3 yards of decomposed granite and try to forget what a mess I was... Cheers and prayers to all of us.

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Replies by: bball, JakeinNY, jag, Carole K

I am 2A, 3.5mm with a high mitosis,and am looking at alternatives does anyone have experiance with IAT in the bahamas, are going to a raw or macrobiotic diet, also looking at Qigong, and ozone /oxygen therapy. Trying to find a path to follow and then enjoy my life. Thanks for any feedback.BBall

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Hi gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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Wetterhorn's picture
Replies 9
Last reply 7/2/2013 - 11:22am

Been a while since I've posted here as I have had the luxury of being NED since Aug 2009, however a recent appt has unfortunately changed that. Last week a routine blood test showed that I was anemic and had very low red blood cell counts. Doc ordered immediate Pet/CT which showed an active mass in my small intestine, near my liver. I have been experiencing some side pain for the last few weeks but wrote it off due to holiday diet. A subsequent CT showed that indeed there is a mass, likely melanoma in the small intestine, approx 3.6 x 2.9 cm large.

I am in NYC, being treated at Sloan Kettering (Dr. Carvajal) and NY Presbyterian (Dr. Taback). Was recommended that since I am symptomatic, surgery would be the best course of action. Curious to know if anyone else out there has had surgery on the small bowel before to remove melanoma? This appears to be a single lesion.

My brief history:

Aug 2007: DX with melanoma on left knee. Wide area excision and positive sentinel node.

Sept 2007: Lymph node dissection, rest of nodes came back negative.

Nov 2007-Nov 2008 - high dose / low dose Interferon

April 2009:  VATS on left upper lobe of lung with 1cm tumor removed. Same surgery had a sub q removed from thigh.

Aug 2009: had another sub q removed from left thigh. Been NED until last week.

Getting an opinion at NY Presbyterian as well.

If you have had surgery on the bowel (small intestine) I would like to hear from others about recovery time, complications, how difficult surgery was  etc.

Thanks

Wetterhorn

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MsKage's picture
Replies 2
Last reply 2/4/2011 - 2:47pm
Replies by: MsKage, lhaley

Hello smiley  I had a recent PET scan, which showed slightly increased intensity in a spot that's been lighting up in my chest for a few months (but only 2.7), plus a new spot in my hip at 4.4 SUV.  The report suggests MRI with contrast to further evaluate the area; my doctor ordered a CT scan, though.  I am a little confused on which is more appropriate and in what situations.  I would like to see a specialist soon, but am very far away from any and also want to get the ball rolling on these scans.  I'm currently stage 3A... hoping it stays that way...  any input is appreciated, there is so much information to learn and things to consider, it's very overwhelming. Thank you.

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KellieSue's picture
Replies 19
Last reply 2/12/2011 - 3:42pm

Well it's been three weeks since I did 8 bags of IL-2. Had scans last week and there looks to be new tumors in the lungs. Damn!

My dr. said there's a small chance if we redo scans in a few weeks it could show better results but we are both not counting on it.

I don't remember much of the actual IL-2. I was out of it most days. Hubby said after bag 8 I was unresponsive so Dr made the call to stop. I was hoping to take a week off then do more but had a tough recovery.

Came home on oxygen, stats were a bit low but feeling better now. Back to work.

I just had a clean brain MRI(whoo!) so I got tested for B-RAF. Hoping that comes back positive and I can get on the trial. It just (within the last week) came to my hospital so I'm positive it could work for me. I'm feeling down and frustrated, I was really hoping IL-2 would do something for me. My cancer seems to be picking up lately and it scares me.

In other crappy news my friend who did the ALT trial with me is having a rough go of things. A few weeks back tumors were found in her brain, she did radiation and seemed to be doing okay. Tumors were gone. Her lung tumors seemed to be responding very well to ALT. Then on Wednesday of this week she was taken to the hospital unresponsive. Found to have numerous new brain tumors. She was moved to Pallative care yesterday. I'm sick to death of this. She has 3 young girls, she's just 36. I don't know what to say or do for her family. I went to visit and cried like an idiot. I don't understand, I just saw her last Friday.  Can I scream now? Please keep her and her family in your thoughts.

 

Kellie(from Iowa) Stage IV, waiting to do B-RAF????

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/4/2011 - 1:31pm
Replies by: Sherron, KellieSue

It is with great sadness that I read that John Brian Becker (JB) passed away this morning 02/0/11.  

Free from pain now and watching over his beloved JSP.

You may have followed their incredible blog:  http://www.bothofus.org/ 

Luke 1:37

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deirgey's picture
Replies 9
Last reply 11/23/2011 - 4:12pm
Replies by: Anonymous, sharmon, deirgey, Jim in Denver, LynnLuc, lhaley

My father has tested negative for the most common gene mutations, BRAF and KIT.  We were hoping for one of these b/c we were under the assumption that there are more treatment options available with either of the 2.  He has Melanoma in his spine, liver and lungs.  It took about 4 weeks for the tests to come back and we finally got them today.  His doctor recommended he start treatment next week with Abraxine (chemo drug) and Avastin b/c we don't know the gene mutation but he needs treatment ASAP.   Just looking for advice, comments, suggestions?  Anybody else in a similar situation? 

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Dynasysman's picture
Replies 4
Last reply 2/4/2011 - 5:30pm

Had my first post-surgical scan on Tuesday.  A brain MRI pre-surgery revealed a "probable" melanoma behind my left ear.  As a result, we did a contrast-CAT in December that suggested nothing major was wrong.  My ONC decided to repeat it two months later (which was Tuesday).

Tuesday's report was that the "probable" melanoma had not grown at all in three months, and may more likely have been a blood vessel captured at an odd angle.  So far so good...

But another angle of the contrast-CAT revealed a small probably lymph node elsewhere in my left posterior neck region (where the problem started in the first place).  So...we need more pictures in 6-8 weeks before determining whether that's a problem or not.

My ONC and surgeon both say they're not particularly worried, but this isn't exactly the same thing as "all clear".  Very frustrating.

Is this the kind of "NED" experience other people have, or am I just stuck in a funny place?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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