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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It was truly an awesome day......walked 3.3 miles with 9 members of my family, even 2 of little grandkids who were only 4 and 5 when Jim passed.  The day was beautiful with beautiful people.  I had donations of $520.00 .....I was so happy for that....met Barbie Girl, Jackie Doss, Margaret Fowler, Cindy Rutledge.....so many people who have lost loved ones way too early.  I walked for all our Angels and for all warriors still fighting....Hugs to all of you. Thanks to Catherine Murrray and Kyle Clarke......

Take Care,

Sherron, wife to Jim FOREVER!

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I have been approached by a journalist from Bloomberg who was ts to speak with patients who have been on a trial for a PD1 or PDL1 drug. If you are interested please email me offline at tturnham@melanoma.org

Thanks

Tim--MRF

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flvermonter's picture
Replies 1
Last reply 5/8/2013 - 8:13am
Replies by: michelleaudie

Hello Again,

 

We just got the call from Moffit for my husband's appointment with the dr as a follow up to his CT and biopsy to take place tomorrow and Thursday.  The follow up with the Dr is 5/20.  Is it me or all appointments going to take forever for testing and then readouts.  Just find it so important and makes it more frustrating than it should be.  Thoughts?

Hugs to all, patients and care givers.

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Hi All,

Scott has an appointment on Friday the 10th at MD Anderson. 

He has not had a scan since his IPI or WBR.  I am wondering how this is going to work.  It seems more logical to have the scan and then the appointment, but I have been told this is how it's always set up.  

If the brain scan is bad, won't that throw everything out the window? He's already had IPI and is taking Temodar.  If those didn't work then it seems like SRS or Cyberknife is the only option and then he would most likely be treated for that at home.  Am I wrong in thinking that or is there more information that I don't know about?

He was told that he will be treated as an outpatient for 2-3 days, so we may have further appointments on Monday and Tuesday. 

If anyone remembers the details of their first visit please let me know.  I'm anxious about the whole thing and patience is not one of my virtues.

Thanks, Lisa

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flvermonter's picture
Replies 2
Last reply 5/7/2013 - 7:56pm
Replies by: flvermonter, hbecker

Hello,

 

My husband has been diagnosed with stage iii cutaneous melanoma and is having a ct tomorrow of his liver.  Then on Thursday he has a CT and biopsy on his right lung.  THe petscan taken a couple of weeks ago showed a spot on the liver and one on the lung.  I have put a bio out there of his history if that helps.

We are in hopes it is only a spot and not more cancer.  I am curious about the lymph nodes and if that is what aided the cancer.  He has had cellulitis in his legs before from swelling, and a couple of colds back a few months.  I have read in the other emails that with weaker lymph nodes, cancer can spread quicker.  Albeit i am a novice here reading and learning what I can. 

 

Also, he had a stomach flu or something last week and again last night/today.  He almost never gets a stomach flu, even when he is nervous.  I think 2 times in one week is more than a coninsidence.  COuld this be from the cancer?  Should I call his doctor at Moffit and let them know?  I ask, as he seems to feel better and no fever with it.  I know if he has a fever, they will cancel the Thursday biopsy and we will have to wait again. 

 

Sorry for so many questions and such, but finding my way here.  Thanks in advance, Mary

Hugs to all, patients and care givers.

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Lisa13's picture
Replies 21
Last reply 5/7/2013 - 2:57pm

I've been searching through past and present posts and aside from about 4 people, it seems alot of people who've had success with ipi are people with sub q's.  Now, forgive me for perhaps not knowing, but are sub q's classified as being Stage 4?  When I think of Stage 4, I think of organ involvement or distant lymph nodes.  That being said, with sub q's, you can sometimes see the ipi working because it's on your skin, but if it's in your organs, you're not aware of anything going on.  Are there many people who've done ipi which has worked on their mets internally? 

I started ipi last Wednesday and as of this morning, I've had cramping and 2 semi loose stools (sorry for the graphic visulization). I doubt very much it's ipi, but I'll probably keep track of my GI problems today and report anything funky to my Dr.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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browneyesangelreba's picture
Replies 6
Last reply 5/7/2013 - 8:59am
Replies by: buffcody, TSchulz, awillett1991, POW, Phil S, Anonymous

Hello, my husband has Melanoma stage IV.  He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test.  Two days after it being removed he had a knot on the right side of the neck.  The test came back regarding his back and it was Stage III Melanomia.  A PET scan was done and the knot was cancer as well.  AT the time they did surgery on the back and next.  He had radiation and was done in August. The Aug scan was good and the Nov scan was good.  January 2013 scan showed something on the lung.  They didnt believe it was cancer but since it  grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later.  The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed.  Sugery was done and  was tested and it was Melanomia.  Now April its in the lower left lung and still shows lesion on the spleen.  They are saying it doesnt look like melanomia but neither did the right lung and it was.  I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine.  We are waiting now on that.  My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there?  No one will tell me what to expect with him in this stage.. How long he has, what do they think is next?  I love this hosptial and the dr. are great.

With him being in this stage and it coming back so fast I want to know what to expect.  Can anyone help?

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lrkg1234's picture
Replies 4
Last reply 5/6/2013 - 7:34pm
Replies by: sharmon, jmmm, kylez

I know that Gleevec and Dasatinib are both targeted therapies. 

Scott is C-Kit positive and was unsuccessful on the Dasatinib trial.  Does anyone know whether or not Gleevec might work even if Dasatinib didn't? 

No doctors have mentioned the Gleevec in a while and I wonder if it's an option for him.

Thanks, Lisa

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/6/2013 - 4:25pm
Replies by: flvermonter, hbecker, Janner

Hi, My husband was diagnosed with melanoma from a mole on his back.  He had it over 20 years, but had changed in February this year.  The pathology came back as melanoma.  Then Moffit removed the rest of the mole and 7 lymph nodes under the arm.  6 of the 7 were melanoma.  Then they did a pet scan and found a spot on his liver and his right lung.

He is having a ct scan of the liver this week, then the next day is the ct for the lung and a biopsy.  He has been diagnosed with stage iii, but if it is cancer in the lung or liver it will be stage iv.  He feels fine, no symptons, no weight loss, or pain anywhere.  He is 70 and had an aorta valve replaced 2 years ago.  he was fine with that.

 

It seems to take so long for each of the steps for testing.  Maybe that is how it is supposed to be, but we started this with the dermatoligist early march.  Once he has the tests next week, it will be another week before we know anything. 

 

I am being positive that the tests will be negative for cancer.  The dr mentioned he would go in and take out the other lymph nodes if it is not cancer in the organs.  if it is, they will do no surgery.  What kind of options for trials are available...anyone know?  Also, where he is 70 and not 40 I am afraid he would not qualify for many trials.

 

I am new to all this, as I told his doctor, we are educated people, but babies when it comes to cancer.

 

Thanks, for any help/advice

Hugs to all, patients and care givers.

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browneyesangelreba's picture
Replies 1
Last reply 5/6/2013 - 12:16pm
Replies by: kylez

Hello, my husband has Melanoma stage IV.  He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test.  Two days after it being removed he had a knot on the right side of the neck.  The test came back regarding his back and it was Stage III Melanomia.  A PET scan was done and the knot was cancer as well.  AT the time they did surgery on the back and next.  He had radiation and was done in August. The Aug scan was good and the Nov scan was good.  January 2013 scan showed something on the lung.  They didnt believe it was cancer but since it  grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later.  The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed.  Sugery was done and  was tested and it was Melanomia.  Now April its in the lower left lung and still shows lesion on the spleen.  They are saying it doesnt look like melanomia but neither did the right lung and it was.  I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine.  We are waiting now on that.  My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there?  No one will tell me what to expect with him in this stage.. How long he has, what do they think is next?  I love this hosptial and the dr. are great.

With him being in this stage and it coming back so fast I want to know what to expect.  Can anyone help?

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triciad's picture
Replies 13
Last reply 5/6/2013 - 10:32am

Hi Everyone,

I had 2 more surgeries this summer because of intransits/satellites.  I will be restaged in a few weeks.  I'm not sure if I'll stay at 3C or move to 4...time will tell.  I think I will be doing a little radiation in the next few weeks.

I am supposedly NED (although no recent PET), so there is not much out there for treatment.  My one oncologist wants me to do Leukine.  My other oncologist says it's nothing more than snake oil and I should just watch and wait.  I am so confused!

If any of you have any information or experiences to share about Leukine, I would be truly grateful.  As always, I look to my MPIP family for real advice.

Thanking you in advance for any help you can offer.  Additionally, let's keep working together to kill the beast!

Tricia 

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Anonymous's picture
Anonymous
Replies 0

since this disease robs some very young people of their life, and there may be parents reading this forum I thought this article was useful

http://parenting.blogs.nytimes.com/2013/03/03/a-high-functioning-bereaved-parent/

 

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Snickers60's picture
Replies 5
Last reply 5/6/2013 - 7:38am

But last fall when we were sitll kind of in the heat of the battle and I was so sick, Wayne found a mole on my back.  He said:  DARLING, you need to get this mole seen about.   I did not think I was the MOLE PROBLEM TYPE.    He looked at it again last week and WOE.......what an ugly mole.  It has changed and it is much uglier.    I have an appt. for a biopsy on Monday !    

I know this sounds absurd with all we've been through with Wayne, but I have been so worried over him and I've had a lot of my own other issues and very debilitated with joint surgery that I just did not follow up.    

LIGHTNING CAN'T STRIKE TWICE CAN IT ! 

I think it's probably a dysplastic nevi.............fingers crossed - prayers said. 

Nancy (devoted wife of 3 X Warrior Wayne)   

Wayne is doing great by the way.   I've just been toooo ill to be on here.  

BLESSINGS AND HEALTH TO YOU ALL......

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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5374brian's picture
Replies 3
Last reply 5/5/2013 - 11:10pm
Replies by: 5374brian, lrkg1234, cltml

My wife finished her 4 treatment of Ipi on 3/19. A week before her final treatment the tumor on her throat began to bother her. By looking in her throat it looked as the tumor had grown into her throat area causing some obstruction. We called Moffitt and the oncologist said to come on in for it to be checked. They did a scan of her neck. The scan showed that the tumor had not grown any since Jan. 2013. They assured us that she has plenty of room for drinking and eating but due to it being a high traffic area it must feel strange. The reason given for the feeling of the size change was the tissue and lymph nodes are swollen in that area. We are scheduled April 4th to see a throat specialist at Moffit to see if he has an opinion. The next thing that has started happening now is the lesion in the throat seems to be building up mucus and causes her to gag and spit on a regular basis. Whatever the stuff is coming from the lesion in the throat in the mornings it causes her to have a sour stomach. She said it is the worst tasting stuff she can imagine. Is all of this the treatment attacking the tumor? What is the stuff dripping from the tumor? Thanks for your opinions and help. 

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