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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Replies by: Fen, KellieSue

Hey all, long time...So I have gotten to my 1 yr anniversary down...and after 2 Pet/CT's I keep getting asked if I have ashma!? So, since 1 month interferon, I have fluid in my lungs and airway constriction.  Anyone else get this?  Did it stay? Is this one of those lifetime side effects that I have been trying to avoid?

And then there is my thyroid.  So the last scan they found something on my thyroid. They (Dr.s) keep telling me they think it is nothing as I go on to the next test.  I have found one article about mel patient who got it in her thyroid...but anyone have thyroid problems after all their treatment?

I am getting a little frustrated. I keep trying to get my body to move on and start getting/feeling healthy. But it seems everytime I get going I get slammed back. And I can't decide how much do I push through and how much a give in.  Any advice is welcome!

Sarah

Stage 3 Mel, NED 1yr

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beatricefromPARIS's picture
Replies 3
Last reply 2/14/2011 - 4:21am
Replies by: Anonymous, y'all Come In, JerryfromFauq

Hi everyone

Recent scans show peritoneal mets (among other) are progressing. Brain still clear.

So Interferon (which kept me stable for a while) has been stopped.

If all goes well, I should start IPI in 2 weeks. I will let you know how it feels!

In 2 years at stage IV, I have had 3 chemos, one bio therapy and interferon.

Options are narrowing down! This one has to work. Touch on wood.

 

 

 

 

 

 

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Lisa - Aust's picture
Replies 2
Last reply 2/12/2011 - 1:40am
Replies by: Lisa - Aust, EricNJill

G'Day Everyone,

http://www.melanomaroadtripusa.com/blog/

Thought some of you may be interested in this. For those of you in the states, keep your eyes peeled for Clint and Jay! My partner Craig and myself have been lucky enough to get to know Clint over the pas tfew years and he really is an amazing person. He recently won 'Young West Australian of the year' which put him in the running for 'Young Australian of the year'. Unfortunately he was pipped at the post by a girl who sailed her boat around Australia. If you ask me, the difference that Clint has made to so many peoples lives here in WA made him the most deserving of the award, but it wasnt to be. Hopefully a few of you will check out their site, follow their journey, and may be lucky enough to come across them.

All the best

Lisa - Aust 

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janiam's picture
Replies 4
Last reply 2/10/2011 - 7:56pm
Replies by: Jerry from Cape Cod, Amy Busby, Anonymous

We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV that have been treated with medications in the past two years.

The purpose of our study is to understand the full impact of malignant Melanoma on patients and their families, including the physical, emotional and social aspects. The results will assist in developing new treatments in the future.

Interviews are by telephone and web, approximately one hour and may be scheduled between 2/17 and 2/23.

Participants receive $200  and it can be donated if so wished.

Please respond with interest or questions to contacts below.

 

Kind Regards,

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710

jmallery@comcast.net

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JakeinNY's picture
Replies 43
Last reply 2/15/2011 - 10:05pm

We all know that there are thousands (maybe millions) of success stories all over the world. Since this site seems to be the largest for melanoma, why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created.

Do the best you can.

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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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