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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chalknpens's picture
Replies 22
Last reply 7/23/2012 - 4:46pm

I saw my orthopedist today ... told him of the open wound on my arm, going for closing stitches this afternoon, as third biopsy came back with clear margins. He asked me who my oncologist was. I said I didn't have one. He said I might want to get one.

When did you get an oncologist?

I am not perfect, but I am enough.

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himynameiskevin's picture
Replies 15
Last reply 7/23/2012 - 8:51am

Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation,  and definitely have a bit of skin irritation - a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days. But I did take a short trip to my hometown, Tucson, which was 100degrees one day and thunderstorms and hail the next, and a a hotel with A/C, back to San Diego on warm day with no A/C here. I'm hoping this headache was just because of all the changes in climate.

I'd be lying if I said I wasn't scared though.

My last PET/CT was late April and my last Brain MRI was May 1st. Both of which looked good and showed that Zelboraf was working. For the most part everything feels ok, physically and neurologically, as far as I can tell. I've been off the steroid for three months now and just need my head to be clear or on the mend to maybe qualify for any trials, if there's any more out there I'd be fit for. I have PET/CT in the coming weeks and a brain MRI on Monday, coincidentally, exactly 2 years from the day my dermatologist had to break the news to me and this new life started. I'm hoping to update you all with a good report. We'll see how it goes. Thanks for hearing me out. I'll talk to you soon.

Warmly, -Kevin

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AllyNTAus's picture
Replies 11
Last reply 7/23/2013 - 8:59pm

Hi everyone, I just wanted to share a positive story about this BRAF inhibitor that I know some of you are also taking.

I have been on Dab for nearly 12 weeks, I failed entry to the BRAF/MEK inhibitor trial due to my lung condition at the time of assessment but GSK granted me compassionate access. When I started taking it, I was in need of steroids to allow me to breath properly, there were multiple small flat mucosal lesions in my lungs threatening to grow into tumors as well as one defined nodule of 4mm, and a number of my lymph nodes were significantly enlarged.

I had my first set of review scans today, and good results. All of the lymph nodes that were identified have decreased in size, eg one that was 16 x 40mm is now measuring 22 x 6mm, a 25 x 16mm is now 9 x 5mm, a 20 x 28mm is now 15 x 10mm (I won't bore you with all the measurements but you get the idea). My lungs are described as"clear with no pulmonary nodule seen". All my other organs remain clear (thankfully I hadn't developed mets anywhere else before I started Dab).

I am so relieved to have this improvement within 12 weeks and can only hope it continues. Every moment more I get with my family especially my husband and little son is so precious. And I am so greatful to the scientists and doctors who have brought about this advance.

Hoping others of you find strength for your battles.
Ally

A bad day's fishing beats a good day's work everytime

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Nell's picture
Replies 1
Last reply 7/20/2012 - 3:50pm
Replies by: RMcLegal

Is Yervoy approved for use on stage III patients, or is it only being used in trials for stage III?  It doesn't seem like there is much available for stage III...

One voice can make a song; one life can change the world.

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AZ_Gal's picture
Replies 3
Last reply 7/20/2012 - 12:17am
Replies by: gabsound, washoegal, AZ_Gal

I had my WLE and LB on Aug 5th, 2011 and almost a year later I am cancer free! YAY! However, I have some sort of cyst or fluid filled pocket in the incision where my WLE was. My PCP doesn't seem to be bothered by it and I see my Derm this coming Monday. I am supposed to be seeing a Derm every 6 months but because I live in an extremely remote area I have yet to see one since my surgery last Aug. (2011) Just wondering if any of you had ever had this problem, or heard of it. Hoping it's just fluid buildup but a little nervous. ANy help is appreciated...THANKS!

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Hello all,

Just a reminder for any mel survivors and caregivers in the central Ohio area. The James Cancer Center in Columbus now has a melanoma survivors group which meets the 3rd Wednesday of each month at 6 p.m. @ The Stephanie Spielman Breast Cancer Center.

(Search "JamesCare for Life" to get more info on this and other great cancer support groups)

Oncologists specializing in the care, treatment, and research of melanoma are frequent guests. A symposium in conjunction with MRF just started this past May and  is planned to be an annual event for those in the Ohio melanoma community.

It's just another great way to receive support from those who understand what you're going through.

Hope to see you there!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Ali's picture
Replies 12
Last reply 7/20/2012 - 3:08pm

Hi guys.  I had my first dose of Yervoy and Temodar three weeks ago (after completing 6 weeks of IL-2 and the discovery of brain mets).  6 days after the infusion I developed some pretty miserable diarrhea.  At the same time, I could feel my subcutaneous tumors shrinking.  I did end up going on steroids, from which we are in the process of tapering off of. 

I went to the Dr. this week so excited to show him the tumors that were so ugly (visible and black) are now nothing more than tiny tight seeds that you had to dig deep to find.  The biggest one in my breast you can't find at all.  I do have a few small ones hanging around, but the biggest news is, I haven't felt anything new in the last 3 weeks (that has not been the pattern).

I assumed this was the Temodar at work, as I understood IPI takes a while to kick in.  When I mentioned this he said the Temodar isn't that potent of a chemotherapy, that this is likely a reaction from the IPI.  AWESOME!!!  Now I just need to be able to wean from the steroids and we try again in a few weeks, and hope that what is happening on the surface is happening all over, brain included. 

I have scans again in September.  There was a point I didn't know if I would ever see a September.  What a roller coaster! 

Thanks for all your courageous examples. 

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Lenusya's picture
Replies 3
Last reply 10/22/2012 - 12:14pm
Replies by: POW, MLAZAR, Anonymous

Dear Community members,

I live in Russia and my cousin was diagnosed with melanoma 2 years ago. After two surgeries and series of chemotherapy the Doctor's prescription is Zelboraf, but it's unavailable in our country.

Do you know if there is any chance for foreigners to get it from the USA, Canada or any other country?

I would be very grateful if you could recommend any reliable e-shops, pharmacies, etc.. in your countries. Please advise.

If there is no delivery I am ready to come and buy it by myself, still I need to know where and if it is sold to foreigners...

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Ronskidtexx's picture
Replies 9
Last reply 7/23/2012 - 9:34pm
Replies by: Ronskidtexx, Anonymous, ScagMom, KRob, Linny, awillett1991

I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said "see you in 6 months." I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

God bless,

Ron Whelchel

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Ronskidtexx's picture
Replies 2
Last reply 7/23/2012 - 9:41pm

I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said "see you in 6 months." I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

God bless,

Ron Whelchel

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jmbaer's picture
Replies 4
Last reply 7/21/2012 - 10:06pm

My dad started in July 2011 with a retinal detachment.

- Opthomologist found a tumor causing the detachment.

-Sent to Wills for radio therapy.

-Lung Met found and resected Sept 11.

-Lung met reappeared and resected again. Oct 11

-Jan 12, started to have some weakness on left side.. went for a mri and pt scan. and found a brain met.

-Did cyber knife to the brain met.

-A couple more spots showed up in his body. One larger one on his adrenal gland.

-Started Yervoy in March 2012.

-July 1 had gamma knife for new spots in brain.

-Had a Pt scan last week July 10th 2012  that showed a few more spots and the adrenal gland spot got larger and dr feels the yervoy didn't work.

WHAT ARE THE OPTIONS??

Dad is 70yrs old and strong.

 

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shannonwittgruber's picture
Replies 2
Last reply 7/21/2012 - 4:23am
Replies by: shannonwittgruber, Fen

Quick history: Dad has Stage IV melanoma in his spine, lungs, breast and kidney. This is dad's 3rd recurrence since his original DX in 2007. Currently severe compression in the spine. Surgery last week to reduce the size of the tumor that was fairly unsuccessful because of perfuse bleeding once they got to the tumor.

My Father had zelboraf delivered to his home today and the instructions say to start taking it....
Dad Is on Paxil (antidepressant) and we have been warned of the interactions with these 2 meds. The withdrawal from paxil is just awful and dad is really scared and lost as far as what to do now. Been trying to get ahold of the Family DR and Pharmacist all day and we have gotten no answers.
Wondering if anyone has been through a similar situation or knows what to do here. Also wondering if Dad can be put on another Anti depressant that wont interact with the Zelboraf and lessen the withdrawal symptoms of the paxil.

I already tried the manufacturer and got nowhere because im not in the USA, the Canadian rep has no answers.

Please respond if you know the answer or know how I can find out the answer. Also what Antidepressants can be taken with zelboraf?

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cdavis324's picture
Replies 2
Last reply 7/18/2012 - 11:24pm
Replies by: cdavis324, Janner

I had Melanoma stage 3 in 2007 on right lower calf. Had large excision and SLNB. SLNB showed one node was positive. All Cat Scans and ultra sound have been good. I had a Pet Scan done this week.  

Findings: Head/face   Focal ssymetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal, suv 5.0. physiologic FDG uptake is seen in the visualized region of the brain,large salivary glands and oropharnx.

Impression: 1.Focal asymmetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal possibly inflamamatory/infecious etioloy or malignancy. clinical correlation recommended.

2. elsewhere, no hypermetabolic lesions

My Dr is on vacation for 2 weeks. Nurse called today with results but has to wait for covering Dr to view the report. She was not much help in explaining. Can somebody please help me understand these results. Thank you so much. 

Thank you

Chris

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chalknpens's picture
Replies 8
Last reply 8/2/2012 - 8:46pm
Replies by: jfergusfl, chalknpens, Anonymous, Janner, natasha

I've read a few other posts here, and learned that some here have had a second melanoma site, as I have. My question is does it matter that mine was found a month later, while others are found years later?

I had my second 'slow Moh' surgery today. The surgeon noted that this site, as the first, is an atypical site with undefined borders. It took three surgeries over seven days for the first site, and then the wound was declared malignant-free with clear borders. That site required over fifty stitches to close, and is now healing with stitches removed. The second site is one I'd questioned and so it was biopsied on a follow up visit a month after the first.  Both sites have been visible for about two years, waiting for me to finally have the courage to see a doctor who could biopsy them and recommend surgery based on the malignant melanoma finding.

Have others here had multiple "primary" sites discovered at the relatively same time? Does this have any meaning as to metastasis? I'm guessing that more sites will be identified when I return for another skin check. I have half a dozen 'pre-cancer' sites presently healing from cryosurgery, and not yet healing well (it's been 8 days) and think some of them may be cancer, too.

Please let me know if you've had multiple melanoma sites identified at the same or nearly same time? Mine are on separate body parts (back and arm.)

I am not perfect, but I am enough.

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Gene_S's picture
Replies 2
Last reply 7/19/2012 - 1:49am
Replies by: washoegal, Gene_S
Today my wife and I went to meet with a local Holistic Doctor in regards to her occasional rapid heart beats. Our previous experience's with a heart MD resulted in her getting asthma from a drug called Caduet.  I am not sure if they still prescribe this drug or not since it has been awhile since I have seen their TV advertisement that claims that they can cure two problems with one drug.  The two problems are for cholesterol and high blood pressure.  My wife took this prescription drug which resulted in her getting serious hives inside and outside of her body and now a life time of chronical broncial asthma.  So much for pharmaceuticals.  I guess that  I am really blessed that she survived this so called treatment and we are now moving on to the next solution.  Today she took a bioscan (also recommended by Dr. Oz)  to determine what course of action she should be taking.  The results showed that she should detox the bowels (even though she does go regularly), take sarsarpilla and parsley. This hopefully will cure her heart problems.
 
Afterwards I asked her about the causes of melanoma.  Which she informed me that melanoma and all other cancers is a result when cells have an imbalance and attack the other cells.  This is usually a result of not being hydrated (not a lack of thirst) as we do not consume enough of good water to flush out the bad cells in our bodies.  I have to agree with her as I do not drink nearly enough water to clean out my system.  Her recommendation is to take your weight and divide it by 1/2 and this should be the amount of ounces of pure water you drink daily.  An example would be that a 200 lb. person should consume 100 ozs. of pure water daily.  Some of this water can be obtained from the foods you eat and not strictly drinking that amount of water.  I was waiting for the S Bomb (you know sunshine) and guess what there was no mention of sunlight causing melanoma in our discussion.  For those interested in doing a bioscan the software that she had was made by a company named Compass.  I will do some more homework on this bioscan system.  You may be interested in it to see what you are lacking in your personal life style.  Also mentioned was the fact that any supplements that you take should be top notch and try to not buy synthetics.  She has very encouraging words to say about the Gerson Theory if you don't wait till you are on your deathbed and expect miracles.  There also is a truly Holistic Cancer Center in Florida if you want to go this route.  I know that there are many warriors looking for a solution to solve their melanoma cancer and I hope that this gives you some hope.
 
Best Wishes,
 
Gene (and loving wife Judy)

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

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