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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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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dawn dion's picture
Replies 16
Last reply 6/16/2011 - 9:25am

Okay folks here we go again - I am off to Moffitt on Thursday for my second set of scans since beginning the ride on the BRAF/MEK  train.   I thought I had this under control this time around but  the closer Thursday gets the more I am once again ready to puke.   I don't know which is worse - Melanoma or Scans.

To all of my friends out there on the train with me, I know that some of you are in the same boat with me this week and I am sending out lots of positive vibes and tons of cyber hugs for all the best.

Hugs and Smiles to you all

Dawn

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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lhaley's picture
Replies 11
Last reply 6/15/2011 - 9:35am

Went back for my post op visit today. Results were as expected but an added twist.  The tumor was on the ulnar nerve (funny bone). Dr White was able to remove the tumon intact, however he could not get any margins.  Technically I am NED (yeah!!!), however, now I have to make some decisions.

Radiation was "lightly" suggested. They definitely want me to talk to a radiologist at Charlotte. He will give me the odds if it will work and the odds that it will damage the nerve.  The tumor board has given me some thoughts but have told me that the decision is mine and they want me to talk to the radiologist.  On the day that I talk to him I will also talk to my mel specialist and get his thoughts. It seems that a new trial is coming to Charlotte for resected disease. The surgeon did not know the logistics and could not give me any info. He only brought this up in response to a question that I had.  All of the trials that I know of you have to have hla 201 positive, and I don't have that.  But, maybe something new is coming.....

Had a hida scan today and found out that the gallbladder is not functioning correctly. Suggestion is to remove but because of the specific issues that I'm having they don't know if it will stop the pain issues.  This scan had been put off because of the new met and surgery in the arm. Thinking on that one. Have already talked to 3 surgeons and all 3 gave me the same thoughts. The hida scan at least proved what was believed.

So, my question is, have any of you had radiation along a nerve area?  What type if any nerve damage did you have? Was it successful for loose cells?

Good news was that when I actually got to read the PET from a few weeks ago it actually says that the lung nodule has shrunk and is termed "inactive"!!!!  

Linda

NED 1 week and hopefully will stay that way for awhile!!  It's been too long since I could post NED!

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eaca's picture
Replies 3
Last reply 6/25/2011 - 9:58am
Replies by: Ranisa, DeniseK, washoegal

First off the good news: my doctor just called with the results from my SNB and WLE - all clear!  I'm so relieved and happy I can stick to the rest of my summer plans without having to go back for another surgery.

Now the question: the doctor recommended that I go in for a CT scan and consultation with the medical oncologist, since my original melanoma was considered medium risk (3.2 mm, ulcerated and mitotic figure of 25).  She said this is fine to be done when I am back in the US (I'm currently in France) third week of July.  Does this recommendation seem reasonable to those who are more experienced?  Would this be the normal follow up for my situation and is waiting until later in July to do the scan fine?

Thanks for your thoughts on this.

Elisa

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Sherron's picture
Replies 5
Last reply 6/15/2011 - 1:45am
Replies by: LynnLuc, Sherron, Carol Taylor, Anonymous

e-mail me and tell me how Eric and Jill are doing...My computer is still not back...I am just so concerned since I cannot be touch like I used to....My work e-mail is sherron.clevenger.i0ub@statefarm.com

Thank you Carol.

Take Care,

Sherron, wife to Jim FOREVER

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MariaH's picture
Replies 6
Last reply 6/23/2011 - 10:32pm

My husband Dave goes in for a routine set of scans today.  We had a family scare with my 30 year old brother being diagnosed with Stage IV peritoneal carcinomatosis, which sent Dave into a panic mode.  He spoke with his onc and decided to also add a soft tissue of the neck scan, since he's had a feeling of something "stuck" in his throat for sometime.  Just hoping that all come back clear so that he can resume his A+ positive attitude!!

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/15/2011 - 3:08am

Is anyone else getting the half-truth from your melanoma expert?  My doctor recently said that my type of mestastic melanoma is nodular melanoma and it is the most treatable kind there is...blah, blah, blah...Seen two ono doctors in this field and I was just told last Friday that my Malignant Melanoma is nodular...

Question...is there a study being done regarding partial disclosure to the patient vs. total disclosure and survival?  I got nodes popping up with ok, lets see if we can get you into this study...no worries, you can wait....I am so confused!  I need advice from people who are going to tell me the truth about my health so I can make an informed decision not use me like some sort of lab rat…

Warriors please advise…

This is what I found on Nodular melanoma(NM) is the most aggressive form of melanoma. It tends to grow more rapidly in thickness (penetrate the skin) than in diameter. Instead of arising from a pre-existing mole, it may appear in a spot where a lesion did not previously exist. Since NM tends to grow in depth more quickly than it does in width, and can occur in a place that did not have a previous lesion, the prognosis is often worse because it takes longer for a person to be aware of the changes. NM is most often darkly pigmented; however, some NM lesions can be light brown, multicolored or even colorless (non-pigmented). A light-colored or non-pigmented NM lesion may escape detection because the appearance is not alarming, however an ulcerated and/or bleeding lesion is common. [1]:696Polypoid melanomais a virulent variant of nodular melanoma.[1]:696

Presently...One Day At A Time.

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Hi, This might be a repeat article, if so sorry...  hopefully it may benefit one of our fellow melanoma family members?

Vaccine May Help Treat Advanced Melanoma

see:  http://www.webmd.com/cancer/news/20110601/vaccine-may-help-treat-advanced-melanoma?ecd=wnl_can_060711

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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gabsound's picture
Replies 7
Last reply 6/15/2011 - 2:13pm

Hi,

I could use some advice. Noticed a lump came up next to my lymph node dissection scar at the bottom on my thigh. There is also another in the groin. I had a Pet/CT last week and it came back with comments about some reactivity most likely due to surgery and that there is a new mass in the groin 2.2 x 2.3 cm, a 1.3 cm rounded low attenuation lesion in the right adductor longus muscle as well as 0.6 cm nodule inferior to this and a 5mm subcutaneous modularity in the incision at the knee (site of melanoma #1).

On the Pet scan the groin mass has an SUV of 2.8, the second lesion on PET only measures 6mm and has an SUV of 1.6. The area of decreased attenuation in adductor longs muscle is not significantly hypermetabolic.  The 5mm area in the knee is less intense than on the prior exam (I didn't see it mentioned on the 1st report. They also see slight activity in the area where melanoma #2 (in situ lesion) was excised. Probably just from the excision.

I called the oncologist and saw him. He didn't sound overly worried as the SUV levels were not very high. He said "see the surgeon" and that they would talk. That was only last Friday and today being Monday they haven't talked yet. I thought the surgeon would stick a needle in and aspirate these lesions today, but he doesn't think that will give him all the info he needs. He wants to talk to the Oncologist and come up with a plan. Of course I'm worried because I can feel both these things and the one that's supposedly 6 mm feels  at least 2.5 cm in size. It seems to have come up fast and grown in the last week. Surgeon says surgery on my leg is going to make swelling and lymphedema worse. Tentative plan made to biopsy these areas in surgery. Oncologist thinks 50/50 chance these things are not more melanoma. I don't like those numbers.

I had the month of high dose Interferon previously and finished mid may. My 1st lesion was ulcerated and had a high mitotic rate 10/mm squared. 

Do they usually take these lumps out? Or do they leave them in and do systemic treatment? Or do they do both?

My head is spinning. My family is very worried. My husband started crying when talking to my daughter and she is very worried. Also had to tell my daughter about my sister who has breast cancer-actually a large lesion in one breast and having a MRI guided bx on opposite breast tomorrow. So it could be bilateral and she will likely need chemo to shrink the tumor before they can even do surgery. This sucks!

Now of course I need to research treatment. Don't know if my stage has changed. And then there's the whole alphabet soup of genetic markers. How do I find out about those? Because it sounds like you need to know that to know what best treatment is. I'm feeling overwhelmed.

 

Juiie in Las Vegas

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