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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kelsta78's picture
Replies 3
Last reply 2/24/2012 - 9:12am
Replies by: Doug-Pepper, Leigh, DonW

Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

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Richard_K's picture
Replies 15
Last reply 2/24/2012 - 8:04am

I got scan results today, everything was good, and I was given another six weeks supply of Zelboraf.  In two weeks I will pass the two year mark of taking Zelboraf.

Dick

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Jydnew's picture
Replies 10
Last reply 2/23/2012 - 7:29pm

Hi,

My daughter is 2.5 years old, with flaming red hair, bright blue eyes, and porcelain white skin.  Her dad, my husband, is a 10 year stage iiia melanoma survivor, diagnosed at age 26.  Both her dad and I have tons of moles, and I am freckled from head to toe.  Obviously, she has many risk factors for melanoma, and I am at a loss as to the right way to minimize her risk.  I've already started annual visits to the dermatologist, and she does already have a few moles.

Do I slather her with sunscreen every time we go outside?  Or will that create a vitamin D deficiency that will ultimately weaken her system?

Do I keep her out of the sun between 10 and 2 in the summer months (this is what I have been doing)?  Or do I follow the research article posted on here recently that said that those peak hours are the best time to be out?

The oncological nurse at my husband's oncology office says the research about needing un-blocked exposure to UV for vitamin D is dangerous hogwash.  I can't believe that, since there seems to be a direct correlation to rising melanoma rates and more "weekend warriors" who spend all their workweek hours indoors and then live it up unprotected on vacations.  

I feel at a loss as to what to believe in the literature and how to best minimize my daughter's risk.  Take this exact moment.  It's a beautiful sunny day at 9am in eastern Pennsylvania.  I plan to take her out to play with no sunscreen, since it's still winter, it's early in the day, and she'll be covered with a jacket and a winter hat.  Her face will be uncovered.  Is that wise?

Wendy

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I have stage 4 Melanoma that has moved to the lungs, they found 15 nodules on my lungs ,  while I was taking Leukine. The rest of my test show that the rest of my body is clear including the brain. I have since started taking Ippi , will be doing my second treatment on the first of March at James Cancer Center in Columbus Ohio. I know all the side effect it can cause but have yet to have any of them. I was just wondering how effective that it has been for someone else. I know Dr. Kendra said it would get worse before it got better, But how much worse can it get.? I have 3 small school age children who are constantly bring home some kind of germs to share with me, so how do I know the differnce between this and the side effects of the drug?

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kelsta78's picture
Replies 12
Last reply 2/23/2012 - 3:29pm

Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

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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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gabsound's picture
Replies 2
Last reply 2/23/2012 - 12:28pm

Hi,

I finished my 4th dose of Yervoy 5 days ago. Minimal symptoms with 1st and second dose ( a little itching, occasional diarrhea (prob food related) and a little tired. After 3rd dose started to have some fever and chills just at night on days I was really tired. I also developed some joint pain especially in my left hip ( surgery on right leg) and some in my back. This was severe at times. Also just generalized stiffness like someone with arthritis. I don't know if this is from the IPPI. I was also doing radiation on my right leg at the same time and think the awkward position could have something to do with this. This is better in the last week ( finished rad thx last week), but I still have aching in my hips at night.

Had visit w oncologist with last treatment and he told me my liver enzymes were up. I also found out LDH was up. He also did a panel to check for arthritis due to the pain I was having. This was fine except C reactive protein which was 26-nml cut off is like 10. This is a sign of inflammation in the body. My dr said he wasn't worried about this number, but sounded more concerned about liver enzymes. Of course I scoured the Internet on CRP levels and found this could be a marker of advancing disease in melanoma patients (ugh).

So now of course I'm thinking pain in the bones must be mets. But, the more rational side of me thinks this should all just be related to the Yervoy not to mention the radiation which I know caused a lot of inflammation due to the increased redness in my skin (fortunately not painful except a little irritated in groin area where undies rub).

Has anyone else had LDH and liver enzymes rise during Yervoy treatments? How about CRP levels?

I'll do PET/CT and brain MRI in next 2-3 weeks. This time severe scanxiety.

Julie in Las Vegas

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shellebrownies's picture
Replies 9
Last reply 2/23/2012 - 8:47am

Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.

Don goes in today for his first infusion of Yervoy. They are still working on how soon he will start radiation treatments.

Does anyone here have anything they can tell me about side effects and/or effectiveness of Whole Brain Radiation?

Thanks!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Lilylove414's picture
Replies 5
Last reply 2/23/2012 - 8:04am

I know it's been a while. So I'll give y'all an update. My first week of interferon SUCKED! I threw up constantly, could barely eat and I got sick of crackers real fast. I also lost 10 pounds! So I told my doctor and she felt so bad about it. She temporarily stopped treatment because it was raising my liver enzymes WAY too high, like 300 over. So I spent the last week getting blood drawn and eating up a storm haha. Oh, and Matt is finally my boyfriend! YES!! He's such a sweety.

Anywho, today I was given the ok to do treatment again. They included a steroid and only gave me half the original dose of interferon. So much better! Well they gave me a LOT of fluids so I've been peeing a lot, but the big thing is I'm not sick and I can hold down food. I did have a stomach cramp and a headache, but I imagine it's an easy fix.

My liver is good, I'm feeling not horrible but very hot, in the not sexy way and I am almost halfway done with my first month! Praise God! Oh, no lymphedema! Healing very well, I can lift my arm high enough to wash my hair, shave (ish), the good stuff.

Anyway, thought y'all would like to know what's new! God bless lovelies!

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

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dearfoam's picture
Replies 22
Last reply 2/23/2012 - 6:57am

Hi everyone,

I just wanted to let you all know that Dad is no longer suffering. He passed away on January 12th.

(I will go ahead and say I have to type this somehwere. It has been a really hard year, and you may not want to read as I recount the last weeks and hours.)

I had posted that we had to move to hospice care after a really hectic out-of-town Thanksgiving hospital episode. I feel like at the time it was deemed Temodar was no longer effective, I had already noticed a subtle decline. He also had a poor reaction to the Zelboraf in November, I think in part due to how advanced his brain tumors had become. The tumors affecting his heart rhythm, the meds also also affecting the rhythm. The continued effects of the steroids, etc. The infection. The seizure(s). All the medications got complicated, and were still just were not effective for him.

Hospice helped a lot, but we still had a lot of stressful problems helping dad through December. Eventually we had to check him into the Palliative care unit at the hospital becaus ehe had gotten very combative and confused, and form there to the nursing home while we figured out what to do. He was such a big guy, I couldn't move him or help him up, and he couldn't remeber that he didnt have the stamina or even blood pressure to suport himself and would fall. I felt pretty helpless.

We finally made arrangements on a Friday to safely bring him home early the next week. We had soem minor crisis at home and had to delay til that Wednesday. We would readmit him to hospice, have more helpers, etc. He had lost the ability to speak clearly, but I could tell he could hear and understand me. He was so excited his favorite team (U of ALabama) had won the championship against LSU. He cracked a tiny half smile. I told him he was coming home the next day and all his "granddogs" were waiting on his bed. He smiled a tiny subtle smaile again. I could plainly see I was not going to have to worry about him "sneaking" out of his bed and falling anymore.

I packed some of his things that day, and the next morning came to get the rest. He looked pitiful and really uncomfortable for the first time since he ad that chest tube in April 2011. I was so glad we were able to get him soemwhere familiar and hopefully relaxing. He was coming home in the ambulance later. I was surprised, but not upset, that he had to go on an oxygen machine. We had used one a lot during the spring after his lung collapsed (from biopsy) and in the summer after his blood clots in both lungs, so it didn't really phase me.

He knew he'd made it and we could tell he was happy, but also in pain. I played a favorite collection of Wagner, brought the dogs to see him (those are our kids), and was able to give him water. He was vaguely responsive. The admitting nurse said she had seen many patients like him "perk up" and have a few weeks. I knew transport must have been tiresome and he needed some good rest, though the timeline seemed off to me. That night it was rough, breathing wise, it got really labored and rapid and congested. The oxygen machine was turned up from 2 to 4 liters. It malfunctioned and then was ok, but the guy was out at 1 am to replace it. It didn't seem to help. I told the nurse over the phone it reminded me of my cat's breathing the night before she died, and it was unnerving. He was not responsive, except I could tell him to swallow and he would. But not much else. The on call nurse came to help me around 2am. (She lived about an hour away.) His HR climbed up into the 160s and his breathing rate was aabout 36/ minute, despite the ativan and morphine. We got him "relaxed" as much as possible his breathing rate had gotten less intense, chest no longer heaving. I finally got in bed at 4:30 and was up on the hour for medicine. She called to check in a few times, and shortly before 8, I went in and he was gone. It was so surreal.

I felt so relived and so sad and so exhausted. I still do.

Thanks for all the help everyone offered to me and answering questions and letting me vent. I still worry about you who are dealing with this, but I am also relieved that so many have had much better responses to their treatment, mostly because you had at least found it before it was so advanced. I hope you all remain active participants in your healthcare and enjoy the hell out of life.

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lhaley's picture
Replies 23
Last reply 2/22/2012 - 9:09pm

Went today to get my stitches out from the crainectomy along with the pathology and suggestions.

Found out that the pathology said that the tumor was already 70% gone before the surgery!!!!  The issue was all edema.  While originally it was to be more radiation ect they have decided that the tumor bed is gone.  They have started weaning the steroids tonight and am now at 3mgs. Will take about 3 weeks with hopefully no issues.

My body is destroyed and will take quite a while to get back strength. I have both an occupational therapist and a physical therapist. I know it will take time but how excited I am with their news!   My next appointment with the nuerosurgeon in 3 weeks, as of today he felt that I had no nuerological damage.  Last Pet was Jan 3rd and at that time was NED. 

The next few weeks I will be working so hard to get my strength back.

I think we flew home from Charlotte instead of the car driving.  Dance with us tonight.

Linda

Originally stage 1A in 1979

Stage IV 2006 - 7 recurrances

Brain Met - Oct 2011 been dealing with steroids since then

Now Feb 15th  NED!!!!

There is hope

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bdhf's picture
Replies 11
Last reply 2/22/2012 - 9:03pm

Would love some advice!!!  After having the 3 cm tumor removed from my brain in December, whole brain radiation just completed due to a new 4mm brain tumor, my docs are pushing for resection of a lung nodule that was found in December when all this started and hasn't grown at all.  I have had 2 bronchoscopies that say that there are no abnormal cells but the nodule is so deep in the lung the docs say they can't be 100% they got to it during the procedures.  I really do not want a resection.  The nodule didn't show on the PET scans, just CTs.  I feel in my heart of hearts (for whatever that is worth) that it is not another tumor, especially since it has grown at all in 2 months.  

What would you do?  

Thanks!  

Brenda

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alabama girl's picture
Replies 8
Last reply 2/22/2012 - 8:24pm

I was diagnosed with stage 3 melanoma in Nov after my wle and snb surgery. It was in 2 lymph nodes and was 9mm deep on my side. They wanted me to have radiation on my side since it was so deep, but none on the lymph nodes. They want me have a CT scan and labwork every 3 months but now the radiologist wants me to have an ultrasound  on my lymph nodes also every 3 months. What i have read does not mention ultrasound at all? Isn't the ct scan enough? She says it may catch something the CT misses. Has anyone else had ultrasounds? Why do some people with stage 3 have chemo and some not? Just confused and hoping someone has some answers.

Thanks!

alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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yoopergirl's picture
Replies 11
Last reply 2/22/2012 - 8:06pm

I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy.   Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us.    yoopergirl

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cwu's picture
Replies 10
Last reply 2/22/2012 - 7:50pm

Hi again,

Dad's oncologist mentioned during his last visit that radiation may help with stopping the growth of the tumor and bleeding.  But it can only be done at only a few spots since his tumors are so numerous on his leg.  Has anyone used radiation and what does it involve? Is it painful, what is recovery like, does it help control the tumor and for how long? Should we save this as a last resort for tumors that are out of control?

Thanks again.

Chau

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