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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JerryfromFauq's picture
Replies 4
Last reply 11/21/2011 - 12:44am

 i am NicOz's mum. we would just like to thank you all for your lovely thoughts re Nicole's passing. Sorry am not very computer literate could only get in to chat room using Nicole's name password ,to let you all know we are sincerely grateful,very special to us as well we all miss her so much  very special to us as well we all miss her so much         ..                                                                             

-hi wanted to let you know Georgia doing ok.

We all miss Nic so much. 

Thank you all so very much ,chatting with you all kept her strong.  Keep up the good fight , dare i say God bless you all,  

yes i know i would have traded places with Nic from the start as well.  l will keep in touch from time to time, try to see if can get new user name.   My son will help.

******************************

        Pam says Georgia is healthy and getting along well.  WE all know she has to really miss her Mother that she was so special to.

I'm me, not a statistic. Praying to not be one for years yet.

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Lori C's picture
Replies 3
Last reply 11/21/2011 - 12:00am
Replies by: LynnLuc, Lori C, WendyPam

A friend has contacted me with an urgent problem - a relative (21 years old) in Florida (Miami) has kidney cancer.  He is on "shared cost Medicaid" and is finding it almost impossible to get care.  She's asked me for resource ideas - I know of no better cancer resource than MPIP.  What should this young man do?

 

Thank you,

Lori

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CaptAaron's picture
Replies 14
Last reply 11/20/2011 - 5:16pm

Good Day fellow warriors!

It's been a long time since I've posted here since I thought I wasn't going to need to again.  However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.

Summary...I hat spots on my lungs this past April, which they scanned 3 months later and they had grown to 7mm and 12mm.  Biopsy confirmed melanoma, so Dr. Chmielowski of UCLA started me on the Yervoy treatment.  I was able to complete 3 of the 4 injections before I came down with severe colitis which landed me in the hospital from 8-11 Nov (got discharged Veteran's Day of all things).  They started me on 100mg of Prednisone which I'm not happy about, but it's made the colitis much better for now.  I've started tappering 10mg a week and I'm at 90mg now.  Needless to say, I'm not finishing the Yervoy treatment.

PET/CT scan the other day showed that the spots in my lungs have grown to 9mm and 22mm, but there are no other remarkable locations of melanoma, so at least it's not spreading to anywhere else yet.  The next steps we came up with are to remove the nodes via surgery and test them for the BRAF mutation.  If positive, I'll go on BRAF inhibitor drug post-surgery and see how things go.  I'm running this plan by my docs at MD Anderson too, just to make sure they wouldn't do anything different.

All-in-all I actually feel good, I'm eating, not quite exercising yet, but walking when I can, got good meds to help me sleep, and I'm not symptomatic from the cancer at all.

So, any comments or suggestions out there from folks on other trials that may be also promising for someone like me?  Also, we're wondering if there may even be a delayed response from the Yervoy and maybe it'll go to work later.  I'm not very hopeful about this since they have me on such high dose steroids and my immune system is just getting shot to pieces from that.

Also, I just want to say to everyone on here...keep fighting this hard, not only for yourself, but for those you love and who love you.  It's the fight in us that makes us strong, and through our strength we will have victory.  Peace.

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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Aileen's picture
Replies 4
Last reply 11/19/2011 - 9:37pm
Replies by: Anonymous, SuzannefromCA, Bugandi

A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

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Wetterhorn's picture
Replies 3
Last reply 11/19/2011 - 4:08pm
Replies by: jag, lhaley, Fen

I posted recently about my nausea that has been somewhat constant for the past month, and after calling Sloan for the 2nd time on this, they want me back in for a brain MRI asap. Getting blood work next week on Monday and will be getting a brain MRI on either Mon or Tues. My symptoms have also included fast rapid twitches throughout my body, sometimes in my feet, sometimes hands or arms, most frequently in the head. This was first noticed a week or 2 ago. In addition, some dizziness and lack of energy has occurred as well. After reading a few posts, I hate to think that I now have a brain met, but unfortunately that is where all arrows seem to be pointing. I did have 2 MRIs done quite recently, late Sept and early Oct that were both clean. This was due to severe headaches, that were thought to have been caused by Yervoy.  Was supposed to go to Costa Rica for 11 days as well, leaving next friday, but that sure seems to be in Jeopardy. FML.

Wetterhorn

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AlisonC's picture
Replies 6
Last reply 11/19/2011 - 1:59pm
Replies by: Lisa13, lhaley, fgilbert63

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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AlisonC's picture
Replies 1
Last reply 11/19/2011 - 10:02am
Replies by: Lisa13

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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joy_'s picture
Replies 10
Last reply 11/19/2011 - 9:59am
Replies by: joy_, DonW, Anonymous, LynnLuc, lhaley, Janner, bradcope1

Hi everyone.  My husband and I have had BCBS (self-pay) insurance for years.  He was orginally diagnosed with melanoma in 2007 with a recurrance in 2010 and is currently NED.  BCBS has now priced us out.  We cannot afford the $1200/month payment any longer.  I have been told by various people that if we lose our current coverage, we will not be able to get future coverage or that no other insurance company will take us with his previous melanoma diagnosis.  Does anyone know if this is infact true or if we have any other options at all.

Thanks in advance for any insight or advice.

All the best,

Tracy

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emilypen's picture
Replies 8
Last reply 11/19/2011 - 1:37am

Hi All,

So after fighting this beast for 4 years it seems we're at the end of the line.

My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

After the first treatment of Carbo/Taxol his sub q's cleared really quickly leading us to wonder if it was a combined response to IPI and chemo, but a 5 week wait for the 2nd chemo infusion led to increased pain and some sub q's popping back up. Finally his bloodwork was satisfactory and he got the 2nd chemo last week. It's doesn't seem to be working as fast this time around.

Meanwhile he's a little confused at times, nodding off throughout the day, really weak and not retaining much in his memory.

Based on his last MRI's to check his spine and brain ( last week) his brain mets are skrinking and no new ones have popped up, but the mel is pushing on his spine in places and is directly in his spinal canal as well.

So he starts more pallative radiation this week. 

He doesn't seem to have registered that the doctor told him he has maybe months to live, ( that was 5 weeks ago) which I am fine with! And I am hoping he makes it to the birth of our first child in late Feb.

We're lucky in many ways, i don't have to work right now so I can take care of him, his work has a 2 year full salary disability plan and covers all medical costs that our Canadian system may not ( like prescriptions) we have a great family support system. Home care when needed, and the morphine takes care of most of his pain.

 

I really hope that the carbo/taxol works and helps get the tumour burden under control so that he can get strong enough for another clinical trial in the new year, right now his doctors say he won't qualify for anything based on his health.

What I'd like input on is how does this end? I'm not trying to be negative just want to know what to look out for.

Sometimes i think we'll go to bed one night and when i wake up, he won't. 

I've looked on the web and can't really find anything about end of life signs other that the couple of hours right before if any one has info to share that would be much appreciated.

 

thanks,

Emily

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Webinar November 28

1 pm (EST)

 

Therapies for Melanoma of the Eye 

Richard D. Carvajal, MD

caravjal

 

Dr. Carvajal is a medical oncologist at Memorial Sloan Kettering, with a special interest in the treatment of melanoma and sarcoma. His research is focused on the development of new targeted drugs and immunologic therapy against these diseases, and currently he is researching therapies for melanoma of the eye. He received his M.D. from New York University with a fellowship at Memorial Sloan Kettering.

 

Please email all questions for the doctor to: cpoole@melanomainternational.org by November 25, 2011

 

System Requirements

PC-based attendees

Required: Windows® 7, Vista, XP or 2003 Server

 

Macintosh®-based attendees

Required: Mac OS® X 10.5 or newer

 

Space is limited.

Reserve your Webinar seat now at:

https://www1.gotomeeting.com/register/889341536

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Wetterhorn's picture
Replies 3
Last reply 11/18/2011 - 4:50pm

Hi all,

Been a little while since I have posted, just thought I would give a quick update. I started Yervoy in July for a small liver met, about 5mm. I got through 3 treatments before experiencing severe headaches and low energy. Brain and Pituitary MRIs showed no evidence of disease, but docs thought the yervoy caused my system to attack pituitary and thyroid, so I was put on prednisone and thyroid medication. Turns out, thyroid levels and adrenal levels came back to normal after I stopped taking medication and I felt fine for a few weeks. 

Then, about a month ago, I began to feel quite nauseous almost on a daily basis. Some days worse than others. I called docs at Sloan and they didn't seem too concerned. It continues to linger however.

Has anyone else experienced fairly severe nausea after Yervoy? Just wondering if I should more concerned.

My lesion did not grow at all since it was originally detected, so at least that was good.

Thanks

Wetterhorn

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Lisa13's picture
Replies 3
Last reply 11/18/2011 - 2:23pm
Replies by: kylez, momof2kids, Angela C

2 days ago was my gamma knife on 2 brain tumours.  Although the procedure was 1 hour and 20 minutes, I got through it okay with lots of anxiety meds!

Anyway, I've never had symptoms from the one brain met which was about 2.5 cm - the other 7mm.  The radiologist even said this was definately abonormal not to have symptoms, but it's a remarkable thing. Anyway, today, I have some slight pain around the area where my tumour would be and around the spots where the screws were. Would this slight pain be normal in the area of the tumour?  Maybe it's doing something right now that it wasn't doing lately, so it feels kind of strange.  I don't need pain killers so I'm okay - it's just a weird quick pain.  Anybody experience pain or sensations after gamma knife??  The pain comes on the top of my head, but my main tumour is deep down in the brain, so maybe it's pain from the radiation, plus screw holes in my head.

Any ideas, support, etc??

Lisa

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

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Doug-Pepper's picture
Replies 1
Last reply 11/18/2011 - 6:43am
Replies by: MariaH

Praise the Lord! Doug had an appointment @ CCI(Clearview Cancer Center) last week. Lymph nodes, blood work, & skin all looked good. He had a clear pet scan in Aug. & will have another one in march. I am so proud of how he has been taking better care of himself. Since diagnosis we have changed our diets, added supplements, & alkaline water. I also noticed that his skin has been much softer after we put a filter on his shower head. I figure it can only help, tap water is not always the cleanest. Anyone have any thoughts on having pet scans every six months? Praying for all who are affected by this horrible disease. Thanks for all of the support, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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I had my last derm appt this week. The derms say I am good to go. They removed the moles on my back with are harder to monitor and measured moles that need to be watched. Thankfully, a derm will be on base every three months, so if anything comes up, I can ask him. Dream come true if you want to ask me. I was very hesitant about asking my fellow jarheads to examine my back!

 

With that said, I would love to have your advice on one last issue. When it comes to watching for "change"....What characterists do you use to determine whether or not a mole is ready to be taken off? Two of the four suspicious lesions are already pretty dark, but have not changed for quite some time, therefore, we have left them. So, with that said, when it comes to change in color, that might not help. But do melanomas tend to grow? Or change shape? I know the ABCD's of moles, but that does not really help because all my moles are weird. And, how long is the "in situ" process. I am hoping to catch more moles in this stage, rather than stage 1. But is that even possible.

 

Thank you all for your help during this hard time in my life. I will have my wife give you updates. In fact, she would be more than happy to give updates. She said my attitude completely changed when I started talking to you all! Jared.

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price9103's picture
Replies 6
Last reply 11/17/2011 - 8:12pm

My husband had a melanoma removed from his L cheek which was all clear around edges.  No radiation or chemo treatments.  No problem for 20 yr, Oct. 2011, after dental work, noticed a swollen neck gland, went to doctor, given antibiotic with no change,  Returned to MD wk later and sent for C-T scan showing lump in neck, ENT doctor said it was probable lymphoma.  Biopsy done and reported to be melanoma.  PET scan results show 2 spots in neck and 1 in Left Upper Lobe.   Needle biopsy done on lung growth, shows Melanoma mets.  He is 88 yr old and is good health, they are doing heart and lung studies before deciding on course of treatment.  We are awaiting results and it is slow and stressful.  Marj

 

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