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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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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john partrick michael murphy's picture
Replies 10
Last reply 7/19/2012 - 10:24pm

I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

The history of the world is the battle between superstition and intelligence.

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Anonymous's picture
Anonymous
Replies 16
Last reply 7/18/2012 - 10:06pm

I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc... only to have metastasis some years later and bad outcomes.  I guess I just don't get the info that is very common to see that says if caught early, melanoma is highly curable, highly treatable, 97% survival, etc....  How can that be the case when example after example on just this forum of early Stage IA'ers who developed metastatic disease?  Should someone with a 0.2 or 0.3 mm lesion that was treated be demanding further treatment of some sort, knowing the possibilities?

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MeNDave's picture
Replies 22
Last reply 7/21/2012 - 11:40pm

It is with a broken heart that I tell you that Dave passed away last night at 6:29 pm with me and his two best friends by his side.  He was my best friend and the love of my life. I will miss him forever.

Because our local hospice does not do iv pain management, we were unable to bring him home with us.  But because of David - that will change.  Not only is Roswell pushing for a palliative care floor in the hospital (they pulled some strings to keep him there where he was comfortable and free of pain), but a whole communitly is working towards changing the hospice services offered to our small community.  I cannot think of a better legacy for David.

My caregiving duties will not stop - I will always continue to offer support to other cancer patients and their families.  He fought until the end, and I could not be more proud to have been his wife for the last 16 years.  Not once did he complain, or ask "why me".  He is the most amazing person I've ever met.

To all my fellow warriors out there ,  I ask this of you: do not let melanoma take a single day from you. 

Much love to all of you... and please, please, remember - DON'T EVER GIVE UP!!

 

Maria

Don't ever, EVER, give up!

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Nell's picture
Replies 6
Last reply 7/19/2012 - 6:33pm
Replies by: Nell, Ali, Anonymous

I have heard that local reoccurances at the primary site are common....but do they worsen the prognosis as far as metastasis to organs go? My Dr. did not change me from stage 3, but I am wondering if there may be more liklihood of further spreading because of these local reoccurances. Almost afraid to ask...don't want to borrow trouble, but thought someone out there might have experience ....

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

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Replies by: Ali, awillett1991, LynnLuc

Wayne and I just returned from his check up appointment.   Only did lab, - saw Derm and saw Dr. B. 

He said he had just returned from a huge conference (do not know if it was OSCO or not) - but they were discussing what to do with patients who had a complete response with ZEL, like Wayne did.  

He said only about 4% of people have this kind of response, but they now do not know really what to do with them.     They are working on a protocol about this very thing and how long a patient should keep taking the ZEL.

Also, they are talking about doing a trial for a PREVENTON drug foro Melanoma mets.   That's all we found out at his point.   In the meantime, Wayne will continue with the full meal deal (4 tabs twice a day) and visit MDA every month -

doing PETS - CATS - ETC. every other month.

This was very, very encouraging to us.    WOW.......a preventive med !!!.  How awesome would that be !  He was very in earnest as he talked to us wanting us to understand these things.....but that he must continue on as he is now -

and we want that very much  TAKING NO CHANCES !   :-)

Just thought I'd share this bit of info we got yesterday at MDA.

Nancy (devoted wife of 3X Warrior Wayne ) 

 

 

 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Watertree0513's picture
Replies 1
Last reply 7/17/2012 - 8:24pm
Replies by: Anonymous

Does anyone have any experience with Halo Moles and a growing halo?

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Nell's picture
Replies 5
Last reply 7/19/2012 - 11:20am
Replies by: Ali, lhaley, Nell, gabsound, LynnLuc

I had a primary melanoma removed from my chest 22 years ago...This January a lymph node appeared in the right axilla. It was removed along with 9 other benign lymph nodes...Since June ..in the last 7 weeks, I have had 3 separate melanoma nodules appear in the right axilla..the 3rd one to be removed tomorrow.  I have a specialist who says radiation is not effective, yet I have read articles saying something different...My scans show that at present the melanoma appears to be confined to the right axilla....What about radiation??  Anybody have a similar experience??

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

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HEYJC45's picture
Replies 5
Last reply 7/19/2012 - 11:02am

Just wanted to share my son's journey with Zelboraf which he started on 3/8.  Initial dose 4 pills twice a day.  He had every side effect listed (head to toe rash, joint pain, rash in throat, fatigue, swelling in hands & feet, etc., etc.). Then 7 weeks in, his liver studies went over the top, so doctor stopped Zelboraf for 2 1/2 weeks. Of course, all the side effects went away while off the Zelboraf.  Then since liver lab levels coming down, restarted him on 1/2 dose, 2 pills twice a day.  Side effects came back, but not quite as severe as at the beginning.  As his liver levels continued to come down to finally reach normal, his dose was increased to 3 pills for 4 weeks, and now back on full dose of 4 pills.  Each time the dose was increased, side effects increased for the first several days, but then leveled off.  Doctor has treated the joint pain with low dose prednisone because both Tylenol and NSAIDS effect the liver.  That has helped a lot.  He has had Mohs on 2 squamous cell carcinomas on is face and neck and several warts removed.  But his scans at 8 weeks showed a decrease in most mets and no increase in any.  Nearly all of the pain from the tumors is gone.  His energy level is good now and he has even gotten a bike to ride after the sun goes down.  We just all hope the Zelboraf continues to work.

This might give someone else an idea of how the side effects come and go with dosages and length of time.

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Sharon's picture
Replies 7
Last reply 11/20/2012 - 2:59pm
Replies by: Sharon, marysan, NYKaren, Jim M.

My husband was on and off steroids durning his Yeavoy treatments.  There is no sign of Melanoma PTL!  He has been seeing an Endrocrinlogist and is taking Hydrocortisone as he is not making his own steroids.  He has tried reducing the amount slowly for sometime now and he just drags and has a hard time eating which are the results of Adrenal fatigue. He is curently on 20mg had been on 7 for a while but just was not able to function on that. Wondering if others have had the same problem and at this point he may need to take them the rest of his life. If any of you can offer any help ideas or what else we could do I would really appreciate any help you can offer.  Thank you Sharon 

God, Family, Friends and Dogs ~ it's all that really matters!

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