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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Jim M.'s picture
Replies 5
Last reply 3/10/2011 - 11:09am
Replies by: Sherron, ValinMtl, MaryD, King, lhaley

Hi everyone,

 I just got off the phone with Dr. Weber. He said nothing showed up on the PET Scan! He has no idea why something showed up in the small bowel during the CT Scan (a distended tubular structure filled with soft tissue density) while nothing showed up in the small bowel follow through or the PET Scan. Do you have any ideas?

 Dr. Weber wants me to follow up with a consultation with Dr. Jonathan Zager who did my lymph node dissection. He just wants his opinion.

 As you can imagine I did the shout after getting off the phone and am doing the happy dance! Thanks to all for your support, prayers and kind thoughts.

 Most of all Praise God!

  God Bless,

 Jim M.

 Stage 3C

LND

Radiation

Ipilimumab 4 infusions + vaccines

NED 3 years, 4 months

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dawn dion's picture
Replies 2
Last reply 3/10/2011 - 10:19am
Replies by: dawn dion, KellieSue

Wow!!!  Here I Sit in the dark reading the forum -  You know folks sometimes I don't know if I like this board or not.   For those of you who are beating the beast, I cheer for you!  I want to be you!  For those of you who run into bumps in the road, I hold my breath for you!  But I gotta be honest, as someone who is relatively new to this, but not, holy cow  reading this board both informs me and  scares the you know what out of me.

Week one of B-RAF/MEK - going good so far I think.  Haven't had any weirdness go on but at the same time, thanks to my wonderful allergies to oak trees, I have a double ear infection, so it's hard to tell.   I haven't had ear infections since I was 8 yrs old and in the last three years, every year almost the same week of the year, BAM!  So if anyone has any suggestions for that - I'd appreciate it.  

Back to B-RAF - like I said nothing weird so far but that kind of makes me nervous.  How do I know if this drug is working if I don't get any side effects?  I know my Drs. say they will be minimal and some of you have said they take a while to kick in but does anyone have any idea?  I know it is different for everyone and honestly I don't know if I want side effects or not.  I like feeling great but at the same time I would like a "sign".   Maybe feeling great is a sign, or maybe it's a disguise.   I hate this damn disease! 

Thanks for letting me vent - if any of you have any input please chime in :)

Hugs and Smiles

Dawn (Stage IV - Florida )

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Shelly in Switzerland's picture
Replies 11
Last reply 3/10/2011 - 6:14am

On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 

Shelly

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Terra's picture
Replies 8
Last reply 3/10/2011 - 5:20am

Hi, I am sorry I haven't posted much lately, we are so busy, we have a 4 and 2 year old and one due in June (unexpectedly). 

 

My husband Derek was diagnosed at stage 3 in 2001, recurred in 07, finished interferon and radiation in 08, lung surgeries in June 10 and January 11 - today I just found out he has multiple liver mets and microscopic disease in his original scar on his shoulder.  The onc thinks our options are ipi, IL-2, P13K and MEK (in TO), or other chemos. 

I think surgery is out of question now, could anyone help me think - I know liver mets are bad and we have not received any news yet on his chest ct scan, I am sick about the possibility of what the holds. 

 

please provide some advice

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King's picture
Replies 48
Last reply 3/10/2011 - 5:15am

Sometimes, one hesitates to post the great news when others are deep in battle.  My reason for posting is to give others hope that is so essential in battling melanoma.

I was at Moffitt today to get the results of the CT of the neck, thorax, abdomen, pelvis and the MRI of the brain that I had last week.  There is no evidence of melanoma!  I had advanced to Stage IV in 2005 with liver metastasis.  I had a major recurrence in 2008 with a peri-pancreatic tumor and a sub q.  I've not had a recurrence since that time.  I think most of my success has been because of my very aggressive surgeon but who knows?  So many factors probably play into it.

I wish everyone could be as fortunate as I have been.  I thank everyone on this Board for their support and friendship over the years.  There are times that I would have felt so alone without the people on this Board.

Stay Strong
King/Kathie

Stage III 2004 Unknown primary

Groin Lymph Node Dissection 2004

Interferon 2004-2005

Liver mets 2005 (4.5 cm tumor)

Liver resection (70% of liver removed) and Gall Bladder removed 2005

GM-CSF   Phase II Clinical Trial 2005-2006

Peri-pancreatic tumor, sub q on buttock/hip 2008

Extensive surgery to remove both 2008

Have been NED ever since

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Bugandi's picture
Replies 7
Last reply 3/9/2011 - 9:56pm
Replies by: Lisa - Aust, Anonymous, KellieSue, dawn dion, Bugandi

Hi,

I have been on the GSK BRAF/Mek trial for 8 weeks now, and go for my first ct scan tomorrow.   Hoping and Praying for good results.  So far, the trial as been ok, but some of the side effects have gotten me.  Extreme joint pain in my feet and hands.  Taking oxycodone for it, which leaves me fatigued.  Otherwise, very few other side effects.  Anyway, wish me luck.

B

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Cookie's picture
Replies 4
Last reply 3/9/2011 - 4:42pm
Replies by: Cookie, MichaelFL, Janner
Have any of you had a corneal transplant (DLEK or DSAEK) since your MM dx? I had a 1.4 Clark's Level IV on my knee in 1995. No WLE, I had a conservative excision. No SNB as it was pretty new at the time. I am still NED with 6 month checkups with my derm and yearly chest x-rays and blood work. I now have Fuchs' Dystrophy and will have to have a corneal (or partial) transplants that will require steroid drops to prevent rejection. I read many years ago about the possibility of the MM returning if you use even over the counter steroid cream. Just wondering if any of you have any info on this.
 
Thanks,
Cookie 

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Bob Hilley's picture
Replies 8
Last reply 3/9/2011 - 3:54pm

I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000.  I won't go into all the details because I have fairly specific issue that I would like help with.  My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson.  That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years---but no organ involvement until recently.  The doctors did an endoscopy because of some gastric problems.  The visual showed masses of anomolous tissue while the biopsy confirmed melanoma.  I had a PET last week.  The PET radiologist says that the scan shows involvement of the duodenum.  My surgical oncologist's interpretation is that there is a 6x7-cm mass between my duodenum and liver with infiltration into both.  Because of the nerves and blood vessels in the area, he has declared it inoperable until it can be reduced with radiation. 

I met with two radiologists today.  One said that he wouldn't risk doing radiation because of the likelihood of damaging the liver.  The other wants to start radiation and chemo next Tuesday.  So some doctors say surgery is inoperable and others say radiation is too dangerous.

My interest is in getting additional opinions about these and other options--especially any experiences with surgeons who may not be so quick to declare a tumor inoperable.

Thanks.

Bob

 

 

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Joyce's picture
Replies 2
Last reply 3/9/2011 - 12:00pm

I used to go by Dick's wife (Dick stage 4) but now I will just go by Joyce. Dick had scans last week and will be 5 years NED in June from stage 4. There is more hope now than ever.  I am just beginning to not think about this awful disease as a part of our lives. I hope and pray the same for all of you.

 

Joyce from MA

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Erinmay22's picture
Replies 5
Last reply 3/9/2011 - 10:57am

On Tuesday I under went a VAT's procedure to do a biopsy on one of the many tiny (size 2-4 mm) nodules on my lungs.  They removed one spot on my left lung.  Initial tests shows malignant cells (per my surgeon) but they are waiting for pathology to confirm what they are.  I was recently staged a 3b in November.  I was trying to qualify for Ipi trial when these spots showed up on a CT scan. 

So now I am starting to research what my options may be.  Any one have experience and info on what they did?  I am should hear from my surgeon next week some time on what the pathology report said - then I'm sure they will have some options for me as well.  But I want to do some research first.  I have no symptoms, these were just found from the CT scan. 

Thanks.  I'm sure I should be freaking out about this even more - maybe it's because I'm still on pain meds ;)  or if I have figured I can't change the results so I'll take it one day at time. 

Thanks!

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Sharyn's picture
Replies 3
Last reply 3/9/2011 - 9:42am

Hi everyone,

It’s been 16 days since my craniotomy, and even I am amazed at how well I’m feeling. Even my vision has been pretty much totally restored! But I’m still not finished with this tumour. Next Wednesday (March 16) I have to have the tumour bed radiated, using LINAC (linear accelerator) technology, here at the Cancer Centre in St John’s. It’s a form of Stereotactic Radio Surgery (SRS), like the Novalis radiation I had done in Montreal, except instead of a mask, they use a “halo” – a circular contraption that has to be literally screwed into my head. Usually, they use 4 screws, but they don’t want to insert a screw where they did the craniotomy, so they’re only going to use 3 screws on me. First, on Friday, I have to go in to have an MRI of my brain. Then I come back on Wed at 7:30 am, they’ll install the halo, do a CT scan of my brain, and send me off to the Chemo Unit for the day to watch TV, read a book, whatever I want to do. Meanwhile, the doctors will be working on my MRI and CT scan, getting all the beams lined up and calibrated. By 4:00 pm, they’ll be ready to radiate, so I’ll be brought to the radiation room, get a few zaps, and I’ll be done. They’ll remove the halo and send me home. This is a normal procedure following a craniotomy to ensure that any potential cells that may have escaped the knife get zapped with radiation. 

As for Montreal, the drug company that sponsors the trial has agreed for me to have the 24-week CT scan done here, and sent to them for evaluation. I’ll have the CT scan on Friday. If all is well with it, I’m hoping to be back on the ipi treatment by March 24. 

In the meantime, there’s lots happening here at home. Michael has moved out into his own apartment, Mark has taken a job in Fort McMurray 2 wks on and 1 wk off, and Matthew has taken a job in Dubai as chef of the Fairmont Hotel and is getting married in a few weeks. Julie and Justin’s wedding plans are moving along for July 1, Ricky and Katherine are heading to Cancun next week, and Jessie is ¾ through her work term at the Arthritis Society. And of course, we still go to the cabin every weekend. Life is good! 

I’ll let you know if and when the ipi treatment resumes in Montreal for sure.

Hugs

Sharyn 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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dian in spokane's picture
Replies 23
Last reply 3/8/2011 - 7:16am

NED! I'm so pleased to say that I have had another great scan result. The only thing that showed up was the old lung issues (not mm) and a lump on my shin where I tripped over the fiddle case and crashed to the ground last month. They clearly pegged it as an injury not a metastes.

I'm headed off to Las Vegas to celebrate!

Thanks for all your prayers and well wishes.

Yall have a great weekend!

 

dian

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akls's picture
Replies 7
Last reply 3/8/2011 - 6:15am
Replies by: akls, Anonymous, LynnLuc, Vermont_Donna, Jerry from Cape Cod, Fen

Hi all.

I haven't posted much about me lately because it's been pretty boring :)  I went for my yearly ob/gyn exam and all was good except my thyroid levels both free T4 (low) and TSH (high) which puts my hypothyroid.  Not really uncommon after inteferon from what I hear.  After finding out my levels were off, of course I start feeling where my thyroid is.  One side is noticably larger, my Dr. said he could see it and feel it, but just one side.  So...instead of just putting my on synthroid, he is scanning my thyroid on Thurs. just to make sure there are no nodules or whatever he is looking for.  Now my mind is freaking that it's back.  Any comments would be appreciated.  I am probably just being me and worrying over nothing.  BTW I had a clear PET in July 2010.

I read the board daily and comment when I think I have worthwhile advice.  I am in awe of all the warriors on this site. 

 

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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jenniperry's picture
Replies 15
Last reply 3/7/2011 - 5:41pm

Haven't posted in awhile. Brian went in for IL2 Dec.14th due to no trial openings of other treatments. While having IL2 they did an MRI since one of his eyes wasn't responding to light correctly. They then told us he has leptomeningeal disease, and his liver was very enlarged and his abdomen was distended from fluid. We were in the hospital until Dec. 21st and went home with the words, he has a few weeks.... We are devastated. He has declined in the five weeks since and now vomits a lot and his liver is failing. The doctor said they couldn't do whole brain radiation because it would just torture him and then the liver would kill him. He's lost about 15 lbs, some he has gained in fluid, so it's more weight than the 15lbs most likely. Hospice has been coming twice a week. He sleeps most of the day and is awake anywhere from 5 to 7hours, a lot of which he feels really bad. Pain meds are working better now. We are just trying to keep him comfortable and say all we can while there is still time. He is only 41 and is so sad to leave as we are to lose him. We do trust he is safe in the hands of God, as are we. Still praying for a miracle.

Cherish every day you have.

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heg50heg's picture
Replies 7
Last reply 3/7/2011 - 12:04am

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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