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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skysar's picture
Replies 3
Last reply 10/2/2010 - 8:16pm
Replies by: Jim M., Jim in Denver, jag

I posted last week regarding the rash I developed either from IPI or antibiotics.  The 2nd treatment was scheduled for 9/29.  Doc decided not to give me IPI due to the rash but did give me the Temador.  My platelets are dropping so I have to have blood checked twice next week and we will go from there.  Rash is getting somewhat better so that is a relief.  Not feeling so hot today after taking two nights of the Temador.  I am on a total of 350mg.   Next treatment scheduled for 10/20 with tests this time.

Sue

Hotlanta

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bluepeople's picture
Replies 14
Last reply 10/6/2010 - 2:43pm

So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons.  It seems that this is a proactive way to battle the cancer I guess.  I'm pretty freaked out since my dad died from melanoma in 2000 (although he didn't catch it till it was pretty advanced).  Are there other options?  Thanks for any input.

Akilyn

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Jaime.30's picture
Replies 8
Last reply 10/1/2010 - 4:56pm

Hello my name is Jaime and my husband is a melanoma warrior.  He was diagnosed April of 2009 with Stage III A Melanoma, which started as a flesh colored lump on his right ear.  He had part of his ear removed and had a radical neck dissection to remove 25 lymph nodes...one of which was positive.  He went on to do Interferon for 10 of the 12 months when something showed up on a brain MRI and our doctors said Melanoma 90% sure....discontinue the Interferon and see a Neurosurgeon.  CT scans and a stealth MRI were done and there appeared to be 2 or 3 small lesions on the brain just above the ear where the primary tumor was.  Dr. says you are only 33, this is in a low risk area of the brain...we wanna go in and take it out...no watching it.  He had a craniotomy on September 2nd and the results were shocking.  They removed a ping pong sized area of what turned out to be inflammation.  No Melanoma cells were found.  We are very happy about this of course but we do not know what is causing this and it is know to be associated with tumors.  The plan now is to wait keep rescanning the brain and hoping that nothing comes back.  The MRI right after surgery was totally clear.  After a couple weeks of using a walker then a cane my husband is doing well. He is not the same on the left side...weaker and a bit unsteady at times but doing so well. A friend of mine that I met on a Facebook Melanoma group suggested I look here for maybe someone who has had a similar situation.  Thank you for reading.  God Bless.

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Replies by: KatyWI

hello all,

I have basically only been reading the board ever since it switched styles.  So I am glad to be back on.

Finally I can say..I see so many have been suffering this summer and in my heart I suffer with you.

and it is painful every time a warrior gets their wings...

wearing yellow, living strong on October 2nd for cancer survivors worldwide and praying for strength and peace for all mm warriors out there....

I am hanging in and still stable 21 mos.

Diana W  3c

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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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kinthai82's picture
Replies 3
Last reply 10/7/2010 - 8:32pm

Hello all,

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2010. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with another one of my classmates, would like to create a video on melanoma awareness.  I want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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Bonnie Lea's picture
Replies 1
Last reply 9/30/2010 - 1:19pm
Replies by: Sherron

message on FB from his daughter.....He is a great guy and friend to me this "canadian friend" as he called me.  OH dear God please give him a safe passage.

Just Keep on Hanging In

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debbieVA's picture
Replies 9
Last reply 10/3/2010 - 10:15pm

MPIP family....

I got a call from Kurt's wife, Pam,  this morning.   This Warrior has been through so much.  

He has many friends here...and I just wanted you to send up a prayer for him and his loving family.  

Debbie Stage 4 NED

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Anonymous's picture
Replies 5
Last reply 9/30/2010 - 7:34pm

I have been on many different medicines for pain relief.

I am now faced with my insurance refusing to pay for long-acting OxyContin medicine that my Dr. has prescribed.

Today, I got a call asking me which of the following medcations I would prefer to try: Methadone or Fentanyl.

After a few brief questions, I was told (in the nicest way possible) that Fentnyl patch hasbeen shown to be ineffective in overweight people.

Which leaves Methadone.

I have never heard of anyone using this drug to treat cancer pain and am skeptical.

 

Any advice, opinions, or facts would really be welcomed and helpful.

 

I already take dilaudid for breakthrough pain and was taken off  MSContin due to how long I had been on it.

 

Thank you!

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TerriNGa's picture
Replies 3
Last reply 9/30/2010 - 4:44pm

Hello Everyone, Came here n 2003, with Mel. wide Etc clear margins. Today Iam back because mel. is back running in my body like crazy.(Just found out Friday) not going back to Emory, just went to a local Cancer Dr here in Columbus Ga,and this man is really on the ball. Get PET scan, & 2 blood works done Monday, to see if I can do a trail In  Bethesda , Maryland. For the first time since this all began, I finally feel like someone is paying attention.I do have some new questions- Like NCI in Bethesda is it any good? Kinda scared of the pet scan. should I be trying to go to MD Anderson?Just any info would really help. If any of u use to be around here in 2003 I went by the name memega. Thanks everyone.

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Rocklove's picture
Replies 2
Last reply 10/4/2010 - 2:00am
Replies by: Anonymous, washoegal

I finished bio-chemo 3 months ago and  have increased in tingling and some pain in the feet. Recently it has also got to my fingers and hands. It does cause problems with every day functions like walking, driving and typing.

The doctor has prescribed gabapentin. Started 3 weeks ago with 100mg 3xday. Now 300mg 3xday.

The Doc also referred me to a neurologist. Does anyone know what I might expect when I see the neurologist?

Not sure what they can do as far as tests and medication.

I was told by my melanoma oncologists the neuropathy could go away in about a year. But am hearing of people having the problem for years.

I'm dum on the subject...and would appreciate some help to understand.

Thanks,

Rocky

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Lori C's picture
Replies 6
Last reply 10/1/2010 - 10:02am

Will is still vomiting despite doing alternate Compazine & Zofran.  I am forcing fluids into him as much as I can .  He is not urinating much, which worries me, because he's drinking a fair bit.  The hospital said to bring him to the nearest ER if I thought he was getting dehydrated.  I will give the meds one more day to work but I'm getting frantic.  He's so tired.

This is the sickest he's been so far and it's pretty discouraging.  The chemo nurse said that given the clean brain scan she was quite sure this was chemo related, but of course, I'm worrying it's the cancer spreading.

Just a very discouraging day.

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emilypen's picture
Replies 8
Last reply 9/30/2010 - 9:45am

Hi All,

Just wanted to give you an update. My husband is participating in a combo drug study :http://clinicaltrials.gov/ct2/show/NCT01155453

Which is a combo study of 2 drugs, one that works on the P13K pathway and one on the MEK pathway ( which is in the same pathway as BRAF).

It's been 2 weeks and the change in him is astounding, to me at least, the docs are of course more circumspect, but my hubby can tell the pain is getting less every day, he actually forgot to take his morphine for 2 hours the other night... which is amazing as he is on 60mg slow release twice a day and before the drug was taking breakthrough pain meds at least once a day.

His energy is up, he's sleeping better, apetite is good and for the first time in a long time he's really eager to get back to work!... :-) so my fingers and toes remained crossed... the next scan is on Oct 12th.

I'll keep you posted.

 

Emily

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Is it common to run a low-grade fever with Melanoma?  Thank you.

Take Care,

Sherron, wife to Jim

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Linda/Kentucky's picture
Replies 14
Last reply 9/30/2010 - 11:21pm

Does anybody know after going through the Ipi trial what treatments you are excluded from?  Just wondering~~~

 

Linda/Kentucky

 

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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