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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24hourmom's picture
Replies 10
Last reply 4/11/2012 - 12:27pm

 I had to create a new login (24hourmom)--I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.

After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he  was put in the hospital for the entire month of July.

We were told in early July that scans showed shrinkage from the 2 Yervoy treatments  but then August scans told us the melanoma was growing again. He went through all of that suffering for almost two months and if he'd had the 3rd Yervoy treatment, I think it would have been deadly.

In August,  I took him to Columbia, SC to get into a Zelboraf trial and he was accepted. Then Zelboraf was approved early and he was removed from the trial. He started Zelboraf as a prescription in September.

He has been on Zelboraf since Sept. and his Nov scans showed us "considerable shrinkage in all areas of concern", his spleen, lymph nodes and lung and liver all responded. His doctors were thrilled and he was uplifted.

We went for his routine three month scans 3/16/12 and were told there is new activity in his liver and his brain. He had to stop his Zelboraf to start radiation, due to doctor's concerns about skin problems.

We started Whole Brain Radiation (14 treatments). He has one lesion (2cm) on his cerebellum, we're told he'll need pinpoint radiation later  for that and many small spots that they hope the WBR will help.

The radiation oncologist did not want him to start a steroid initially because he wasn't having headaches and said the steriod can damage his liver (which is already a problem) but we had to start the steroid last week. The headaches started and he was vomiting. Now, on the steroid, the headaches are under control.

The nurse intially told him not to drive. Then the doctor told him he could drive at his discretion but said "not to quote him on it and don't go on the interstate". I'm  confused because I don't think he should be driving as one doctor told us he could have a seizure at any time.

He will recieve his last WBT tomorrow and can restart Zelboraf  next week. We won't go see the doctor again until May or have scans for at least 6 weeks. I guess now is just the time to wait and see.

He is exhausted all the time and I am getting mentally worn out.

I feel horrible just writing this because I know it must be harder on him than it is on me but the focus is continually on him and this disease. The efforts I make toward normalcy are met with resentment and then I feel guilty. I am so sad for my kids this week because it is Spring Break and they need a break from all of this.

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melmar's picture
Replies 6
Last reply 4/11/2012 - 10:36am

Just wanted to report that I just had my first 12 week scan since starting Merck's anti pd-1, and I am thankful to report that it appears to be working! Spot in lung shrinking. Spot on back shrinking. Most importantly no new spots in brain or elsewhere! Will keep posting future results as I know many are following this study. Thinking of the rest of you out there and hoping for additional success stories.

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OB Mike's picture
Replies 3
Last reply 4/26/2012 - 9:19pm

I am finishing my 4th dose of ipi soon and my abdominal tumor is still growing causing me shortness of breath and weight loss. Does anyone have information for my onc about raditaion therapy?

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H555's picture
Replies 3
Last reply 4/10/2012 - 2:25pm

I just took my first dose of 4 pills, with much gratitude and hope about an hour ago. any tips from those of you who've taken this med in terms of foods to avoid, supplements that you think help hold off the possible resistance, things that seem to work for you? I understand the hugely increased sensitivity to sun exposure and will take care, taking them with a full glass of water, and then have meds left from the side effects caused by Interferon for nausea etc. i take Celebrex already for arthritis and BP meds.  my earlier posts and now my profile describe my mets, prior treatments and how i got to stage IV. thank you. Ron

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Mitt's picture
Replies 4
Last reply 4/10/2012 - 9:46am
Replies by: Janner, Webbie73, Mitt

Hello,

    We just learned today of the diagnosis.  All we were told is that it is 0.6mm witha Clarks staging of II.  We have an appt with a general surgeon next Mon. for excision of the remaining tumor.  Does anyone know if waiting a week is too long or should we get into someone sooner?  Also, should we be going to a more specialized surgeon?  Thanks so much - Mitt

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Karin L's picture
Replies 6
Last reply 4/11/2012 - 4:26pm

Today is 2 days shy from 1yr. ago beginning 2 courses of HD IL2.  I had a PET/CT and the results were amazing.  No signs of disease in the lymph nodes, liver or bones.  One area did light up however, and that is the L5 area in the spine (I did have disease there previous).  Getting a lower spine MRI to determine exactly what is going on and we will go from there.  I have had some severe neuropothy in both hands and feet (to the point I could feel nothing up to my knees) and other parts of the body were pins and needle feeling also (lips, teeth, etc.) and the neurologist thought the pain in my right leg was from a pinched nerve.  After completing Solu-Medrol and tapered off Prednisone the neuropothy is under control except for the right leg area still having numbness.  This is all connected somehow so we will get it figured out! 

I almost made it into the 6% club!!!  I choose to believe I just might get there yet : ).  As bad as it was within the liver and the bones...this is crazy good news!  Gone, all gone but this one area.

 

Karin

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pbnjelley's picture
Replies 5
Last reply 4/10/2012 - 2:17pm

Hi!  I started Zelboraf in late February for a Stage IV diagnosis with mets in my lungs.  Before that, I was on the ipi trial and was non-responsive to that treatment.  I've had just about every side effect listed for Zelboraf and have had to reduce my dosage to 480 mg twice a day but the most worrisome for me right now is hair loss.  See, I'm also engaged to be married in September and I realize that of all things to worry about with my diagnosis, the vanity involved with losing my hair is kind of a ridiculous concern right now,  But I am human and hoping that I can have my own hair for my big day.  I have lost quite a bit of my hair so far and just wondering if anyone out there has completely lost their hair because of Zelboraf.  Is there an end in sight or should I just start looking for a wig? 

I check the message board often and am uplifted by all the good news of people who are on this treatment. 

Today is my day!

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blairashley's picture
Replies 8
Last reply 4/13/2012 - 12:10am

Hi all.  Just received word from my oncologist that my lymph node biopsy (right armpit) contained spitzoid cells and he recommends being aggressive and treating me for stage 3a. 

?!??!

I am having a PET scan & brain MRI on Thursday, plus a pre-op appt to remove more nodes.  I am really confused.  Not one month ago I was told no further treatment was necessary after my February wide-excision & inconclusive SLNB.  What are spitzoid cells anyway?  Doc said they're common in younger people (I'm 29). So confused as to what's happening......  Guess I'll know more on Thursday. 

Any advice?

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olivermb's picture
Replies 5
Last reply 7/12/2012 - 8:21pm
Replies by: Sia, alicia, AngelaM, olivermb, Janner

Hi Everyone,

I was recently diagnosed with my second in situ (my first was two years ago). Both were caught early. I've had a number of dysplastic nevi removed, and I have many moles (though the biggest ones are probably about 5mm, but those aren't too many).

I'm just kind of flipping out over the diagnosis of a second one. Thankfully, both were caught very early -- characterized as early or evolving. But now, with my moles and atypical ones, I'm feeling like a walking time bomb.

I've read the stats that about 8-12% develop second primaries, but does anyone know the likelihood of developing 3 or more if you've already developed 2?

I'm trying to come to grips by recognizing that I have a full-body photo done, that I'll be seeing my derm even more regularly now (3 months), and that I do monthly self checks. But somehow, this isn't reassuring enough for me right now. Scared, scared, scared.

I feel bad about even expressing these fears given the things people on here have gone and are going through. You have my greatest admiration.

Any thoughts are welcome.

My best,

Mary

age 47

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justlittleoleme's picture
Replies 4
Last reply 4/10/2012 - 12:57am

Off to IU tomorrow for repeat scans to see if my hubby is an ipi responder.
He is scheduled for an infusion of Zometa tomorrow too.
Praying the ipi worked and the three spots on his spine and pelvis are smaller and there are no new ones. We really could use some good news!
His oncologist is thinking of starting Temodar if there is any growth of the spots. I am worried about that. He continues to lose weight. Could be due to the high protein diet due to the high dose of steroids he is on.
We are scared!

We don't know how strong we are until being strong is the only choice we have.

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aldakota22's picture
Replies 2
Last reply 4/8/2012 - 4:40pm
Replies by: bikerwife, yoopergirl

  Want to wish all the fighters and their families a HAPPY EASTER  or  PASSOVER.May we all be here for next years holidays ,even better that we are today.God bless you all.       Al

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CaringforMom's picture
Replies 10
Last reply 4/10/2012 - 10:31pm

Sad to report that we began Hospice this week for my Mom.

She fought with all the strength she had, but the agressive cancer has overtaken her.

Additional mets in brain, tumors still growing in liver, lungs, abdomen, bowel.

Just too much to fight.

Hospice has been a huge blessing already.

The doctor did not give much of a time estimate, other than 1 to three months.  He also added that this is a very agressive cancer.

I think if we were more agressive early on, if ipi had been available earlier.....a lot of "what ifs" running through my brain right now.

 

Be agressive with your options - request ipi early and the BRAF test early.

 

There are a lot of great new methods/drugs available and my gut tells me that if we were able to get those new therapies earlier we would have had more of a chance of recovery and more years with my Mom.

Keep fighting everyone!

Thank you for sharing, for your posts and for sharing information.

You have all been a blessing to me.

Would love any information from those who have entered Hospice from Stage IV.....what kind of time do we really have??

Thanks so much.

I can do all things through Christ who strenthens me.

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Sad to report that we began Hospice this week for my Mom.

She fought with all the strength she had, but the agressive cancer has overtaken her.

Additional mets in brain, tumors still growing in liver, lungs, abdomen, bowel.

Just too much to fight.

Hospice has been a huge blessing already.

The doctor did not give much of a time estimate, other than 1 to three months.  He also added that this is a very agressive cancer.

I think if we were more agressive early on, if ipi had been available earlier.....a lot of "what ifs" running through my brain right now.

 

Be agressive with your options - request ipi early and the BRAF test early.

 

There are a lot of great new methods/drugs available and my gut tells me that if we were able to get those new therapies earlier we would have had more of a chance of recovery and more years with my Mom.

Keep fighting everyone!

Thank you for sharing, for your posts and for sharing information.

You have all been a blessing to me.

Would love any information from those who have entered Hospice from Stage IV.....what kind of time do we really have??

Thanks so much.

I can do all things through Christ who strenthens me.

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KevinM's picture
Replies 5
Last reply 4/10/2012 - 1:05am

I was diagnosed in March of 2006 with stage 3 (golf ball sized axillary lymph node) with an unknown primary. I completed 3 rounds of Bio-Chemo at Beth Israel in Boston and remain NED. I have no idea if it was the treatment or not but I am thankful that I chose to be aggressive in my fight.

As many of you know, I love to run and have always used it as a means to judge my health and also to celebrate it. So in just over a week I will be running The Boston Marathon for the 12th time. It will also be my 20th marathon. For the past several years I 'I've run with the Melanoma Foundation of New England Team. Many team members are either survivors, caregivers or have family members that have been impacted by melanoma. It is great to share a determination to spread the message of prevention and early detection.

This year I am running in memory of Jerry Sullivan (Jerry from Cape Cod). I met Jerry at a MFNE event and have been inspired by him since. We traded many emails during the past few months. He especially liked it when I toasted him with a cold Sam Adams after the Hyannis 1/2 Marathon. I plan on doing the same after Boston!

I've often said that melanoma might kill me but will never beat me.....cheers to all that feel the same! 

Carpe Diem!
Kevin

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KevinM's picture
Replies 3
Last reply 4/7/2012 - 12:50pm
Replies by: Wilson, michelleg, Linny

I was diagnosed in March of 2006 with stage 3 (golf ball sized axillary lymph node) with an unknown primary. I completed 3 rounds of Bio-Chemo at Beth Israel in Boston and remain NED. I have no idea if it was the treatment or not but I am thankful that I chose to be aggressive in my fight.

As many of you know, I love to run and have always used it as a means to judge my health and also to celebrate it. So in just over a week I will be running The Boston Marathon for the 12th time. It will also be my 20th marathon. For the past several years I 'I've run with the Melanoma Foundation of New England Team. Many team members are either survivors, caregivers or have family members that have been impacted by melanoma. It is great to share a determination to spread the message of prevention and early detection.

This year I am running in memory of Jerry Sullivan (Jerry from Cape Cod). I met Jerry at a MFNE event and have been inspired by him since. We traded many emails during the past few months. He especially liked it when I toasted him with a cold Sam Adams after the Hyannis 1/2 Marathon. I plan on doing the same after Boston!

I've often said that melanoma might kill me but will never beat me.....cheers to all that feel the same! 

Carpe Diem!
Kevin

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