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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MeNDave's picture
Replies 2
Last reply 2/8/2012 - 9:07am

Dave has an appointment on 2/22 to see how he is doing on the Temodar.  While it has kept him "stable", there was a slight increase on the last scan of existing tumors.  There are no new tumors however.  His onc wants him to do one more round, and then move on to a an anti-pd1.  I believe the one they are looking at is MDX-1105 (which I never heard of, only the MDX-1106).  Due to the eye issues he had on IL-2, he won't even put Yervoy on the table.  I'm not sure I agree with that, since there is no guarantee that it will happen again, and it was corrected with steroids.  However, Dave agrees with him, so I have to respect his decision. 

Has there been any study reports released regarding any of the anti-pd1s?  Or does anybody know if one is showing to be more effective than others?

Any info would be appreciated...

Best wishes to all,

Maria

Don't ever, EVER, give up!

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yoopergirl's picture
Replies 9
Last reply 2/7/2012 - 6:47pm

I am stage lv with a braf negative but have never been told much about it. Right now am doing the Yervoy, 3rd treatment coming up on the 20th. Last year had interferon for the month and quit beacuse of all the side effects it gave me, Yervoy is giving me itching but that I can handle. If someone can steer me to good site about Braf I would appreciate it. My oncologist is 120 miles from me so it isn't like I could just pay him a visit but need to write down things to ask on the 20th. 

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Ann from Iowa's picture
Replies 3
Last reply 2/7/2012 - 5:56pm

Is it possible for melanoma to spread from one part of the body to the eyelid?

My husband is Stage IIIB and had recurrance to one lymphnode in axilla area two years ago, a 5 cm. node with extranodal extension.  No problems since but also has a condition called LyP which comes and goes.  About 3 weeks ago he got a nodule on his eyelid  which he assumed was a stye but it did not hurt but has not gone away.  He now has another in the other eye on the eyelid.  He went to his local eye Dr., only a Dr. for glasses. and he said it could be a Chalazia which is a fancy word for eyelid infection.  He put him on an antiobiotic and he will go back in two weeks.  The nodules are hard and do not hurt.  Just wondering if he is o.k. to wait until his regularly scheduled appt. with oncologist at the end of March to check this out if it does not resolve with the antiobiotic.  From reading about the LyP condition it sounds also like you can get lymphoma of the eyelid too.  We are not really too worried about this at this point but was just wondering if melanoma can spread to the eyelids or if anyone has had any experience with this.  Thanks for your help.   

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VANCOUVER, BRITISH COLUMBIA, Feb 07, 2012 (MARKETWIRE via COMTEX)

-- Health Canada has announced its approval of Yervoy(TM) (ipilimumab) to treat metastatic, or advanced, melanoma. It is the first new treatment for the disease in more than a decade, and is the only medicine proven to significantly extend the lives of patients living with the disease. Melanoma is the deadliest form of skin cancer and one of the fastest growing cancers in Canada.

 

Best regards,

 

Jimmy B.

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Kelly7's picture
Replies 9
Last reply 2/7/2012 - 3:53pm

Hello,

 

My brother,37, was just diagnosed with metastasized Melanoma in his  right lung. He has 3 legions, 2 inside and 1 outside the lung. He starts his IL2 treatment on Monday, February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatments to do at the same time as the Il2, before and after.

PectaSol-C to slow down the cancer cells from growing.

Double Helix Water to repair the cells

Upping vitamin D levels to 10,000 iu/ day.

Completely cutting out ALL dairy, sugar, and breads.

Has anyone on this site had any positive results from using alternative medicine as well as IL2?

 

Any advise for him going in on Monday? How can my family support him the best? Is there something we should be bringing to the hospital or something we should avoid???

 

Thank you so much!

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Minnesota's picture
Replies 6
Last reply 2/7/2012 - 1:18pm

I have completed my WLE and SNB. Both are okay, thankfully, so I assume that means I stay at stage 1B (as I learned here). No one has used a stage number for me, they say I had a T2a melanoma removed.

I have had a full skin check, and will be doing that every 3 mos. I also received a comprehensive eye exam, as recommended by the dermatologist. I'm going to make a chart with photos so I can keep a close eye on myself.

The dermatologist cautioned me against any treatment that an oncologist might recommend. He said there is no treatment (at this point for me) that would help. He said that if it were to reoccur, it would most likely be in the same location, and removed surgically.

The surgeon said I could meet with an oncologist to see what he/she might recommend, but it would probably be nothing. I told her what the dermatologist said, and then she said she agrees that it would be okay with me not meeting one also. I asked her if I should have any scans. She said something like, "finding something on a scan before it presents itself does not change prognosis." So, no, to scans.

As I understand it, we don't have melanoma specialists in Minnesota, and my insurance doesn't allow out-of-network coverage to go out of state. There is an oncologist who works with more melanoma patients. I think his name is Thomas Amatruda, MD.

So, my questions are:

Is it important to meet with an oncologist now?

Is there any type of test/scan I should be requesting or that should have been offered to me?

Thank you

Persistence (sometimes) Prevails When All Else Fails

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 Does any one know the status of a young woman featured on a Discovery Channel & network news as a patient with a great response to her melanoma. Beeive she was from the midwest and was in  a trial with the drug Zelboraf.Been trying to see how she has been since she has been on the drug for a while. Thank you

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 Does any one know the status of a young woman featured on a Discovery Channel & network news as a patient with a great response to her melanoma. Beeive she was from the midwest and was in  a trial with the drug Zelboraf.Been trying to see how she has been since she has been on the drug for a while. Thank you

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Mike N's picture
Replies 10
Last reply 2/7/2012 - 12:46am

January is my 11 year anniversary of having my 0.85 Clarks level III biopsey, and 0.93 surgical removal depth mm removed.

SNLB was negative.

I have been fortunate to be NED all this time. Just want to add my anniversary here to add a little hope for others that may have been recently diagnosed with similar mm depth.

All my best to everyone fighting this terrible monster of a desease.

Mike N

It's about today

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Ali's picture
Replies 6
Last reply 2/6/2012 - 10:21am

I finished 10 bags of IL2 on Friday.  I had the usual side effects and gained 22 pounds.  They said I would loose the weight quickly, within a few days.  Now over 24 hours later I have only lost maybe 2 of those pounds.  I am on lasix, and I feel like I urinate maybe my normal amount.  Just wondering if the fluid loss starts to pick up here in the next couple days, of it I should be worried.  It is pretty uncomfortable, but if I thought it might be normal I could stop worrying about it.  Thanks so much, any experiences of how long it took to shed the water appreciated!

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lhaley's picture
Replies 5
Last reply 2/6/2012 - 10:10am

I am so greatful for all that has happened. The tumor ended up being deeper and while shrinking the Dr agrees that this was the perfect time to get it out now. .  There is still edema and will take time but will improve.   He was able to remove the tumor!!!!

I get to come home tomorrow!  It will take time. They steroids are still high but have taken it down some. They also are antiseizure.   I'm already off of pain pills!  It does sound like a little more radiation will finish it off. I guess that's discussed in a few weeks.  I've been put in a trial for the dura liner so I get a little closer attention which is fine.

I probably won't be online much, Just vegging out. 

Linda

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mrsmarilyn's picture
Replies 8
Last reply 2/6/2012 - 10:00am
Replies by: mrsmarilyn, jim Breitfeller, jag, Gene_S, Anonymous

Hello

My last post was pretty dramatic as we were told that the only way to reduce my brother's tumor on arm was amputation.  He did not  do that - and went with radiation for two weeks instead and he is getting reduction.

 

After the radiation, Sarah Cannon is suggesting a new clinical trial - AMP targeting PD 1 - instead of Yervoy?!  His tumor is very large in his upper arm and has three very very small spots elsewhere.  I know Yervoy is slow to respond - but this a new clinical trial is a Phase I -  it is a difficult decision.  The targeted pathway is described on several websites.

 

Is Anyone planning to be on this clinical and also what do you think about this brand new approach vs. Yervoy.  He has already exhausted Braf targets with an excellent outcome over 24 months except for this tumor in shoulder/arm that the Braf/Mek did not touch.

 

Thanks-and he is glad he kept his arm - but wants to remove the large tumor.  Best wishes and prayers - we are not giving up!! (as our dear friend Amy Busby told me)!!

Mrs Marilyn

sister of Gary Stage IV

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Hi,

Its been a while since I posted an update on me. I just went for a full oncology workup last Wednesday......PET/CT scans, blood work, and clinical exam and a one hour discussion with my melanoma oncologist and melanoma nurse practitioner. Everything is normal, I am NED. NO EVIDENCE OF CANCER!!!! I am working for 5 months now, feel great and LIFE IS GOOD! One year ago we were discussing right leg disarticulation (amputation from the hip socket). I am vigilant, do frequent body skin checks and daily leg checks, looking and feeling for new growths, lumps, bumps etc. I did four doses of Ipilimumab (yervoy) at 3mg/kg last December 2010 to February 2011. I have been NED since my PET/CT scan two weeks after my 4th Ipi dose.

Thank you all for being on this board. This is a wonderful support and information network! I may not post as often these days but thats because I am very busy living life and melanoma isnt taking up all my time right now!

Vermont_Donna, stage 3a, NED

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Lisa13's picture
Replies 24
Last reply 2/4/2012 - 11:08pm

Today, I had my brain MRI appointment to see the gamma knife procedures I had 2 months ago. 1 is gone and the other one is shrinking - so it's good news.  They found 2 small mets today which devastated me, so I have an appointment on Monday to get gamma knife done again. They really want to send me on WBR, but after reading the webinar on Melanoma International, I'm sticking with their opinions. I had 2 and they're gone, so this other 2 will hopefuly go away as well. Every 8 weeks, I'll see what comes up and may be lucky to only have 1-2 more arrive for awhile.  You just don't know. 

I'll also be starting ipi again as it shrunk 50% and even some disappeared and now all of a sudden they have marginal growth. My lymphocytes are back up to 1900, so if it can do the job shrinking again, it could also work it's magic inside my brain.

I'm terrified, but I have to believe that sometmes brain mets don't come all the time. I've met numerous people (mostly woman) who had 2-3 and have been hear for 3 and some 5 years.

Lisa

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

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Charlie S's picture
Replies 12
Last reply 2/4/2012 - 8:15pm

For the supposed road to happines, with a wedding, it is something new, something borrowed and something blue; with melanoma it is scans of nothing bigger, nothing smaller and nothing new.

No, I'm not getting married, but I sooooooooooo want to divorce myself from melanoma; but it always bites me in the ass with symtoms anew, a treatment borrowed and certainly a sky that is blue as it drapes a similar cloud over my mind.

I never wanted to marry melanoma, it was a forced marriage. Even worse, it is not clear to me that this forced marriage was a man or a woman or maybe just an entity.  My mind tells me it was the latter, but oddly it has been my constant mistress, prodding me for constant intimacy, demanding that I look at her, pay attention to her, touch her and feel her and feel the wrath if I dare look the other way and shun her glance.

Or it could be a man disease that seeks my attention and wants to punish me for inattention and seeks revenge on my body as a result.

Either way, I just don't get it. 

No, I'm not having sexual orientation issues, but as I approach a milestone in my life; I have to say, as far as melanoma is concerned.............I still don't get it......and that, to me is the lesson and what is to be learned.

 

Cheers,

Charlie S

 

 

 

 

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