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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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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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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Sharyn's picture
Replies 18
Last reply 2/7/2011 - 1:52pm

Hi MPIP family,

I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Jydnew's picture
Replies 7
Last reply 2/7/2011 - 11:20am

Hi,

Due to the big ol' storm coming through the east, my husband's oncology visit was canceled tomorrow.  But his bloodwork shows that he remains NED.  It was 9 years ago this month that he was diagnosed with Stage IIIA Melanoma - 1.33 mm non-ulcerated primary on the the tricep area of his right arm.  He had microscopic deposits in 1 node, found on sentinal node biopsy.  He had a complete lymphandectomy 6 weeks later  - other nodes were clear.  He did no additional therapies.  He gets a CT scan each year, and semi-annual bloodwork, and semi-annual oncology and dermatology visits.  We are vigilant but don't live in fear.

He was diagnosed a week or so after we returned from our honeymoon in New Orleans, a week after his 26th birthday.  We celebrate 9 years of marriage and 9 years of NED, as well as his 35 and my 33 birthday this month.  It's a good month...

I post an update for him every 6 months because I wanted to see these updates 5, 6,7,8, 9 years ago.

Wishing you all the very best health,

Wendy

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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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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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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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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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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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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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JewelryCrafterGirl's picture
Replies 17
Last reply 2/5/2011 - 7:47am

I have been having a really bad burning sensation for many days that will not go away in my armpit right above the area where 3 lymph nodes were removed.  The back of my upper arm feels sort of like a numbness shot is wearing off.  It also feels like there may have been injections in my armpit, so hard to describe but a continuous pain/annoyance.  Has anyone experienced this sort of thing?  It has been 11 days since the surgery.

I also had the WLE on my back which is doing remarkably well as far as pain goes.  My uvula was damage from the breathing tube during surgery and that caused me more pain/discomfort than the WLE.

Thanks, Pennie

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carol b's picture
Replies 6
Last reply 2/4/2011 - 9:59pm
Replies by: DonW, carol b, KellieSue, Fen, triciad

I will find out tomorrow if i am B-RAF positive. Many prayers are needed as i feel it is the best treatment for me.. I found a new tumor under my breast on the rib bone last night about the size of a pea. I guess mel has broken out of the lymph nodes. I dont know what to think about that. Any ways, prayers for u all and thank you all for your stories of inspiration and hope. Praying all is well with all of you

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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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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Carole K's picture
Replies 6
Last reply 2/4/2011 - 4:26pm

I felt since so many people asked about the treatment I did, it would be easier to reply on the board.  Let me start by saying  I AM NOT IN ANY WAY OPPOSED TO CONVENTIONAL TREATMENTS.  I just chose after much research to do alternative therapy. 

After having been diagnosed with the brain met and knowing what my prognosis was I fetl alternative medicine was best for me.  I still see my oncologist , and my neurosurgeon and I lvoe them to death.  I made the decision to do anthroposophy. I felt I wnated to live my life to the best of my ability.  I did not want to be sick for whatever time I had left on this planet. 

Let me just clarify that doctors who practice Anthroposophy are MD"s who have gone to medical school, interships and residency.  They chose a different path to practice medicine,  Anthroposophy was started in Berlin and is a standard form of practice there.  Anthroposophy doctors for the most part are part of a community, it's a way of life.. someof you may have heard of THE WALDORF SCHOOL. They are part of the Anthroposphy way of life. they grow veggies hydroponically.  they live a very simple life and for the most part stress free....sounds good to me..

The doctor who prescribed my regime was in the process of moving to Louisville, Ky when I went to the office. I did not see him, but anothe doctor who took over his practice at the time.  Dr. Johnson prescribed injections of Mistletoe, yes,  the kissing branch, this is for the cancer,  astralagus for the immune system and formica for overall well being. I gave myself injections twice a day three times a week for about two- tow and one half years. 

I also became very selfish and began meditating, having massages ( yes I know they are controversial for cancer patients ) and taking care of CAROLE.  I knew I was in trouble and had to do all I could to try to get my body back in balance.... I had been doing a great deal of exercise at the time and continued with it, walked on average of 3-5 miles a day--- to keep the endorfins high.. on the recommendation of Dr. Morton at JWCI.  also I swam daily  ( which I miss more than anything at this point.. I now live on Long Island adn boy where I am it is an ISLAND.  LOL  ).  I was in good shape.Sadly, not any more. 

I followed a macrobiotic diet for two years and am very sorry I went off it.  I strongly recommend it ....  I am following it somewhat but not like I once did. The first four to six weeks are very cleansing..  you would not believe the toxins excreted from your body, your skin breaks out, you have horrible breath and you loose weight.,  but once you are cleansed you will never look better, feel better or have more energy , NO FOOD CRAVINGS... and an overall feeling of complete well being..  Yes, I know I have to get back to it  FULL TIME AND TOTALLY. 

If anyone would like any information please e mail me directly--- melanomahelp@aol.com

Alternative medicine is not for everyone.. DO WHAT YOU FEEL IS BEST FOR YOU.  GO with your decision and NEVER LOOK BACK.  NEVER GIVE UP HOPE.

Love and Light

Carole

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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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