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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debandmike's picture
Replies 7
Last reply 6/19/2011 - 11:10pm

It was April 18 when Mike started his first series of IL-2. All total for the two weeks he got 19 treatments (12 the first week and 7 the second week). We now are taking our next step to see if the IL-2 is doing its job. Tomorrow scans and then scan results on Tuesday, July 21st. Mike has been feeling well and has been back to work for three weeks. We are hoping and praying for the best of news.

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StevenK's picture
Replies 10
Last reply 6/19/2011 - 2:18pm

Got the call this morning. Melanoma. They excised it a few hours later and now the entire side of my face is bandaged up. The report doesn't say nodule melanoma, but it presented like that. A fast-growing mole out of nowhere. They don'y know the depth because doctor did a shave biopsy. He thought it was something else. Been about 5 months since it first appeared. Doctor says it was very small and a good chance it hasn't spread. I'm not so sure. He screwed up doing a shave. I'm so scared. I can hardly think straight. Is it possible it hasn't spread? - Steve

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shirlwhiting's picture
Replies 1
Last reply 6/16/2011 - 1:37pm
Replies by: Anonymous

My grandson (stage III - unknown primary) is losing weight for no apparent reason.  About 10-13 pounds.  He says he feels ok.  Has anyone lost weight as the first symptom of a recurrence of melonoma.

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nickmac56's picture
Replies 1
Last reply 6/16/2011 - 10:59am
Replies by: Becky

As I posted last week, my wife ended up having grand mal seizures due to Cyberknife radiation treatment on the area of her brain where she had her craniotomy to remove the two melanoma tumors which bled. The irritation of the brain and insufficient post radiation anti-seizure medication caused the seizures. She spent 5 days in the ICU while they ran continuous EEG monitors and did CR scans and MRIs. Fortunately there was no sign of other tumors, just the readily identifiable irritation around the original tumor site. 

She is now home and on a fistful of daily medication. But the medication should all come with better warning labels - so if you are ever on the following, be prepared for a variety of side effects:

Decadron or dexamethasome is the steroid. It's an anti-inflammatory - which she was on post radiation but on insufficient dose. Causes mood swings, fuzzy thinking, loss of memory and confusion.

The anti-seizure meds are Kepra, Dilantin, and Lacosomide. They also cause her great confusion, anxiety, make her highly emotional (she is crying a lot) and a bit unsteady.

In talking to one of the neurologists on weekend duty at the ICU who is originally from Eastern Europe - he said that it was pretty common knowledge over there about the side efects of Cyberknife and that they treated far more aggressively the potenital for seizures by prescribing in advance the sterioids and antiseizure meds in suficient doses. So it's a bit of a trade-off - you get guaranteed side effects from these powerful drugs, but at least you probably aren't going to have a seizure and end up in ICU.

She will be weaned off the steroids in the next week or so and that should help. Her attending neurologist says she will get more used to the Kepra (the anti-siezure med of choice because it doesn't go through the kidneys), which is a good thing as she is likely going to be on Kepra for the rest of her life, hopefully on a reduced dose. In the meantime she can't be left alone.

We won't know untl our oncologist visit next week as to how many more weeks this pushes back her next systemic treatment while her brain calms down.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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mom3girlsFL's picture
Replies 14
Last reply 6/20/2011 - 3:38pm

I don't know why I keep putting off things my gut keeps telling me to say.  You would think after having been through the melanoma experience you would say what you need to say, when you need to say it.

I have followed your story behind the scenes for a long time.  I have often wanted to log in and send loving thoughts and prayers to you both.  I have watched your videos.  I have cried with you.  I have prayed for you.  I have been encouraged by you.  I have been scared by you.  I have been strengthened by you.

I don't know if either of you could know the depth of emotion you have touched in my heart.  I am sure I am not the only one.  I love you both and have never met you.

I thank you so much for letting me in to your lives through your posts, through your videos.  I have never seen such an amazing couple - the two of you are so truly blessed to have each other.

I am ashamed at myself for taking so long to send this message.

I want you both to know I have been praying for you all along.  I want you both to know you are probably two of the strongest people I have ever encountered. 

Thank you for opening your hearts and lives to me.  You are both an inspiration.  Eric, you are my hero. 

God bless you both.

Laurie 

Do not fear tomorrow, God is already there.

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gabsound's picture
Replies 2
Last reply 6/16/2011 - 4:32pm

Thanks a lot, for the replies to last post. My gut feeling is these lumps are not good. My surgeon did mention fat necrosis as an option. He also said just due to surgery you can get fluid collections e.g. I didn't mention that I also did an ultrasound on myself (I'm a sonographer- I've mostly done gyn and obstetrics for last 20 years). Not that this is my area of expertise, but if I saw something like these near a woman's ovaries, I'd say "they better take that out- could be cancer". I showed images to both dr's as well. Also one of these lesions increased a cm in each direction in 1 week.

I appreciate your support. Still waiting for docs to talk, and to get call re: surgery scheduling. My sister had bx on her "good" breast. She has to wait a week to see her surgeon. Hopefully she will see oncologist as well. I felt the lump myself recently. It's huge! Hope it hasn't spread far.

I had my re excision yesterday. At least 3 inches for small lesion. Path report just said melanoma in situ-no depth or other info. Also saw cardiologist due to chest pain. He's convinced it's all stress and prob some GI issues, so will take Prilosec. Finally, somebody said I'm ok. Yeah- prob not going to have a heart attack soon :)

I'll update w any news.

Julie

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Hope Returning's picture
Replies 11
Last reply 6/22/2011 - 10:15am

Is the BRAF test a simple blood test? How do you test for it/?

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stanscott's picture
Replies 2
Last reply 6/15/2011 - 10:02am
Replies by: Carol Taylor, lhaley

This time no mm. Yeaaaaaaaa. I do have a new BCC. Waiting to hear on procedure.

Music is the river that navigates history.

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Carol Taylor's picture
Replies 10
Last reply 8/26/2012 - 3:00am

There's been much recent discussion and mention of using aloe vera, herbals, and other natural products. My daughter, Jessica, has her PharmD and is a licensed, practicing pharmacist. The other night I asked her about the use of aloe vera in treating cancer and we had the most interesting discussion and I learned A LOT! (Love to see my tuition dollars at work!) I asked her to write down what we discussed and email it to me so I could pass it along to you. Whether you take any natural products or not, you may find this very interesting and educational.

I'm not trying to dissuade anyone from doing what you're doing, but I am trying to pass along relevent info that may be useful in making decisions that you can live with and help you live. It took her two emails to get everything in that she wanted to say, so I put them together and here it is:

"Aloe vera and other herbals or natural products are not FDA approved.  This means that the company that manufactures the product does not have to do clinical trials or provide any evidence to support the claims that are made on the label.  The manufacturer also does not have to prove that the list of ingredients on the label is actually what is in the product.  Therefore, there is really no way to know what is in the product you are buying or how much of an ingredient is really in the product.  In other words, 100% aloe vera juice really does not have to be 100% aloe vera juice and there is no way to know if it is or is not.  A product can also claim to cure anything, and there will be tons of websites online that will claim that it can cure anything, but in reality there is usually very little data, if any at all, to support the claims.  With prescription and over-the-counter medications, it is up to the company to submit clinical trials to prove to the FDA that the product is safe and effective, is what it says it is, does what the company claims it does, etc.  With natural products, the burden is on the FDA to prove that the product is harmful and pull it off the market.  Also, don't assume because it is "natural" it is safe and has no side effects or drug interactions.  Cyanide is natural.  Everything has properties that will act in the body in some way and possibly cause side effects or possibly even be harmful.  There are hundreds of drugs with different properties and actions in the body, so it is entirely possible that a natural product could interact with something.  However, some natural products like fish oil and niacin have been researched and are widely accepted, used and prescribed regularly by physicians, and are included in medical treatment guidelines.  The safest thing to do is ask your doctor or pharmacist before using any herbal or natural product.
  Next, I have done some research into legitimate data regarding benefits of aloe vera in cancer and risks, side effects, drug interactions, etc.  I found that in 2002, the FDA pulled OTC laxatives that contained aloe due to lack of safety data.  I also found that high doses of aloe vera can be harmful and case reports of hepatitis have been reported.  Case reports are rare instances of something happening, so they are not enough to say high oral doses of aloe cause hepatitis, but they are hints that there may be a problem and that studies need to be done to further investigate.  The NCCAM, which is the go-to website for legitimate up-to-date herbal information, stated that a two-year study of orally consumed aloe in rats actually showed carcinogenic activity.  This cannot be applied to humans, but it shows there could be a problem with aloe ingestion.  MayoClinic stated that aloe may reduce the risk of lung cancer, but ingestion for over a year could increase the risk of colorectal cancer.  There is little data, which is conflicting, but there are risks of ingesting large oral doses of aloe vera.  Further studies need to be done and I did not find any data to support aloe for melanoma treatment, so the risks aren't worth the possible benefits.  Now there are tons of unreputable websites that speak highly of aloe's healing power, those may be what they are seeing.  Here are the websites I found;

  http://nccam.nih.gov/health/aloevera/

http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/supplement-guide-aloe-vera

http://www.mayoclinic.com/health/aloe-vera/NS_patient-aloe/DSECTION=safety

Feel free to pass the websites along and you may want to suggest Melanoma Prayer Center users look up natural product information at one of these places and ask their doctors or pharmacists before using anything.

Jessica sent this as a brief follow-up email; “I mentioned about aloe being a laxative.  Because of this it can cause electrolyte imbalances.  I meant to mention this but if you look at the websites you will see it.”

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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shellebrownies's picture
Replies 11
Last reply 6/16/2011 - 2:51am

Good morning everyone!

If you've been following along with our story, then you'd know that he didn't end up qualifying for the BRAF/MEK trial and he was instead offered Chemo as a hopeful stopgap. Dr. Lawrence was clear in that it wasn't a high chance it would work effectively (25-30% chance, basically), but with how aggressively Don's cancer was spreading, other options like Ipi were not viable.The hope was that the chemo would work enough to bring Don's liver functions back into a more stable place so that he might qualify for a compassionate use PLX trial that was opening soon.

Don had his first treatment (carboplatin and paxiltaxel) on May 29th. After a tough couple weeks (he ended up getting a staph infection and spent another week in the hospital), Don went for his follow up visit with Dr. Lawrence on Monday.

He asked Don how he was feeling: better, worse, or the same. Don said about the same (keep in mind that the Vancomycin he is still taking for the Staph infection makes Don vomit at least twice a day). I mentioned to Dr. L that it seemed to me that the tumor under Don's arm had shrunk some (it actually had been bulging out of his armpit making it so Don couldn't put his arm down to his side completely). He asked Don if he thought that also and Don said yes, because he could bring his arm all the way down to his side again.

Dr. Lawrence took a good look under his arm and palpitated the area well. He was shocked and amazed at what he found. He told us that the response that Don had was something he would have expected if he were on the BRAF trial, but never expected to see after chemo. He said that the underarm tumor used to feel like a softball; now it felt like a couple of marbles.

His liver numbers, we later discovered, had a similar transformation. Don's LDH level on the morning of 5/30 (a few hours after receiving the Chemo) was 2375. The LDH level from Monday's blood draw was 539.

Based on the level of Don's response, rather than put him into the Compassionate Use trial as planned, Dr. Lawrence wants to continue Don on the Chemo for as long as it seems effective. This will be judged treatment by treatment, with the knowledge that the BRAF drugs are still there as a resource if needed.

It also seems promising that the pain medicine levels that were working well for Don when he left MGH post-chemo treatment are too high for him now. His pain management doctor (who we also saw on Monday) agreed that they should be lowered and is bringing the Methadone dose down from 10mg 3xday to 7.5mg 3xday. Even after switching this on Monday, Don hasn't had to use his breakthrough meds since Sunday.

We are stunned and thrilled that we finally have made some headway against this beast. Still, I have to admit that I am having a hard time switching gears; I still am afraid to have too much hope. Please help me believe. 

Thanks to you all, and please, keep Don and I in your prayers...it finally seems to be working! smiley

 

Michelle, wife of Don

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Wilfred's picture
Replies 8
Last reply 7/13/2011 - 6:14pm

Here is something I wrote for family and friends a month ago. I posted it on facebook and was going to send it out via email; I changed my mind about the email. I know that posting it here will be like preaching to the choir, but maybe you would like to copy it and put it somewhere else. I feel better about where I am even though I don't really know what is around the corner. I am glad I found the MRF group, you are teaching me things I did not know. Thank you.

One week ago today, at Sinai Hospital in Baltimore, Dr Didolkar, Chief of Surgical Oncology, removed a melanoma from my right ear - FOR THE FIFTH TIME. It's not his fault, it's mine. I grew up in the Bahamas, got sunburned all the time; nowI pay the piper. It started in October of 1998 when I went to Dr Ronald Sweren, Dermatologist, to have him look at a mole that had started to break open. This mole had been removed back in the late 1970's. He took a biopsy and it came out positive for melanoma. Dr Didolkar removed it. Nothing more until the summer of 2007, then Christmas, 2007, then December 2009, then last week. I have had radiation therapy twice. Less than 2 months ago, I went to Dr Didolkar for my regular six month checkup. Nothing. The same day, I went to Dr Sweren for my regular six month whole body exam. Nothing. Three weeks ago I complained to Miss Ann that I was waking up in the middle of the night because my ear hurt. I asked her to look at it. She saw a red splotch and a large bump. We went to see Dr Sweren. He said he thought it was Chondrodermatitis Nodularis Helicis, an inflamation/infection of the ear cartilage. BUT, he said, given my history, a biopsy was needed. Because of the location, he asked me to go to Dr Byrne, a facial, reconstructive surgeon, and get him to do the biopsy. Dr Byrne saw me in 15 minutes and did the biopsy. Two days later, Miss Ann and I went to Canada to open the cottage for the year. I was not concerned about my ear, I had a case of Chondrodermatitis Nodularis Helicis (sounds cool, right?) not melanoma. A week after the biopsy, I called the doctor for the results. melanoma!! AGAIN!!! What the hell is going on!!!!! Why me????? This can't be!!!!!!!! I could not finish the conversation. Miss Ann was nearby and could tell that it was not good. I cried. A lot. I couldn't think properly. I was pissed off. I was upset. I was scared. That's the problem with melanoma, even with early detection there is no guarantee that where you see it is the only place where it is. I called Dr Didolkar's office and they asked me to come straight from Canada to Baltimore. We stayed two more days in Canada and left. We spent the night with my brother, Vernon and his wife, Lucy. They were very loving and supportive, as was Miss Ann, I was scared. Macho me scared of something you could hardly see. Dr Didolkar had seen the biopsy report. They arranged for all the normal tests: blood work the next day, PET/CT scan, I arranged the MRI. Surgery was scheduled for the following Thursday. We went back to NJ for a few days and then back to Maryland. Surgery was moved up to Wednesday. On Wednesday morning, I went to Sinai at 9:00am for a nuclear medicine procedure where they inject a nuclear substance directly into the melanoma and then tract it to the sentinal lymph nodes for that area. There is NO procedure more painful than this. The technicians hate to do it because they know how much it hurts. Then off to PreOp. The stick an IV in the back of your hand, you get interviewed/checked by doctors, nurses, anesthesiologists, surgical nurses, the surgeon. Then you wait. Did I mention that I was scared? Well I was, even though I had been there, done that four times before. Finally, three hours late, (surgery schedules are fluid) the Nurse Anesthetist came and gave me me a little "cocktail" and I was out of it. So, here I am, sitting here writing this for you, and me, I suppose. Yesterday afternoon, Lisa, Dr Didolkar's Nurse Practitioner, called to say that the pathology report on the lymph nodes was negative (that's a good thing in doctor speak); and that the path report on the section of my ear that was removed showed that there were clear margins. That means that there was no sign of melanoma on the edges of the piece. That is also good news. On Monday, I go back to Baltimore to see Dr Didolkar and discuss what comes next. Radiation? Some other therapy? Who knows? Do I feel better; am I comfortable? NO!!!! I'm still pissed off; I'm still scared. My ear looks like hell - the top of it is not connected to the ear lobe. Did I mention that I'm scared? Do I have good doctors, nurses, technicians, a loving/supportive wife, children, family and friends? Yes!!!!!! I am still scared. How many more times will this happen? Dr Didolkar says I don't own the record; I feel sorry for the poor bastard that does, but I am selfish - why me - I am scared. The attached video is very good. Look at it, show it to your children, talk about it, make them wear sunscreen (at least 30 SPF), share it - and these comments if you want - on facebook or by email to your family and friends. Breast Cancer is a serious threat, but not the only one. Did I mention I'm scared? I am.

If you fight, you may lose, If you don’t fight, you will lose.

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EricNJill's picture
Replies 16
Last reply 6/21/2011 - 8:05am

Eric has been losing the loss of his legs and so his Oncologist sent us to the ER last night.  We came home so he cold be comfortable.  He has multiple bilateral cerebral tumors that are hemorrhaging and several cerebellum tumors that are also hemorrhaging. He also has a spinal tumor at C7, T7, and T8 and the cancer in the vertebrae that they found on Wednesday has gotten worse and is putting pressure on his spinal cord now. He has been sent home with Dilaudid so that he can be free of pain as the swelling increases in his brain. These tumors can not be treated with surgery and with the extent of his disease, radiation would also not be suggested.  Please continue to pray for us all.

JillNEric in OH

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JerryfromFauq's picture
Replies 9
Last reply 6/15/2011 - 11:56pm

After feeling/finding an approximate 2 cm lump in  my right breast on the 6h, I had my schedluded 6 month scan on Monday the 13th.  The Medical Oncologist is meeting with my Oncological surgeon to schedule a biopsy. 

I'm me, not a statistic. Praying to not be one for years yet.

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http://abstract.asco.org/AbstView_102_78772.html
A phase II trial of nilotinib in the treatment of patients with KIT mutated advanced acral and mucosal melanoma (NICAM).

http://abstract.asco.org/AbstView_102_79034.html
BRAF, NRAS, and KIT mutational analysis of spindle cell melanoma.

http://abstract.asco.org/AbstView_102_79248.html
Aberrations of KIT, BRAF, NRAS, and PDGFRA in Chinese melanoma patients and their significance: Large, scale analysis of 644 patients.

http://abstract.asco.org/AbstView_102_81787.html
Feasability and reliabity of the assessment of BRAF and c-KIT mutations in cytologic samples from metastatic melanoma.

http://abstract.asco.org/AbstView_102_79034.html
BRAF, NRAS, and KIT mutational analysis of spindle cell melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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