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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JenC's picture
Replies 3
Last reply 3/11/2011 - 9:49am

My husband is finally getting BRAF. We were trying ipi but his body is shutting down so fast. New tumors show up daily and he is wasting away. He participated on the phase 3 trial but got dacarbazine. Since then he has done one cycle of IL2 and 3 doses of ipi. I hope he gets the drug asap and it works fast.
JenC

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Jlynn2303's picture
Replies 1
Last reply 3/11/2011 - 8:05am
Replies by: lhaley

Hi,
Last October, my 63-year-old step-mother was taken to the ER for a GI problem resulting from old bariatric surgery. They did a CT scan of her abdomen and picked up spots on her lower lungs. The radiologist compared the CT scan to one taken three years previously when she had gone to the same ER for the same GI stuff and found that the masses had grown. It turned out that her doctor had forgotten to inform her. She had surgery to biopsy and remove the larger lump, (they removed a lung lobe) last November ('10) and it came back as melanoma, stage IV. A Pet scan in December came back clear. Apparently, she also has cysts on her ovaries and her CA-125 came back extremely high (over 1000). She is scheduled to have another PET in April, although the insurance company still is not certain it wants to pay for the first one. They have denied Interleukin treatment. Her father, brother and grandmother all died of various cancers. They did a skin inspection and found nothing. She seems to be feeling the same as always, no worse, no healthier.

I am having trouble getting a straight answer out of people and have some questions.

1. They actually discovered stage IV melanoma in her lungs over three years ago. When they talk about prognosis, how do they figure the time?
2. How accurate are PET scans? Everyone seems to think they are infallible, but I've seen stats of 81% accuracy. What does a clear pet scan + a positive CA-125 mean?
3. How does having had melanoma impact all of the other, unrelated surgeries and stuff that she will have to have to tx her many other ailments?

Thanks,
Jennifer

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RMcLegal's picture
Replies 5
Last reply 3/11/2011 - 7:55am
Replies by: RMcLegal, ShariC, Anonymous

I underwent biochemotherapy treatments at the University of Colorado Cancer Center in 2003, after receiving a Stage IIIc diagnosis (14 malignant nodes).  Today, I'm still above ground and healthy, showing no evident disease.  I've blogged about the lighter side of the journey at www.hotelmelanoma.blogspot.com.  Any other biochemo veterans out there?  Please share your stories.  Best wishes.  Rich McDonald

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akls's picture
Replies 3
Last reply 3/11/2011 - 7:46am
Replies by: lhaley, akls

I posted earlier in the week about my thyroid being enlarged.  They found at least two nodules on my scan one of which was "cold".  They sent me right over to ultrasound which dectected the nodules also.  Needless to say off to a biopsy at U of M for me within the next couple weeks.  Did anyone have actual nodules that turned out to be nothing?  I know the stats are in my favor, but can't help but being freaked out right now. 

 

Amy S. in Michigan

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

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hi,

This is very minor issue, but was curious.  I have been off of interferon for year and a half.  My cholesterol was normal before interferon, but since doing interferon it has been high.  I hoped a year after being done with interferon I would see cholesterol go down, but instead it has gone waaaay up.  I have spent past year eating low fat, no carb, healthy diet, exercise daily blah blah blah haha do all that I am supposed to but it has gone from over 200 to now over 300.  I wondered has anyone else found that the interferon did this? I would like to blame it on that, doctor pushing me to go on medication but I am trying not to, but seems I have going to have to. 

thanks laurie from maine

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glewis923's picture
Replies 14
Last reply 3/10/2011 - 7:05pm

Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

1- How long did it take for you to "present" any side effects..? 

2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

3- Is it really true that showing some side effects "means its working"?

 

Thanks for any input.  Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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ComfortZone's picture
Replies 3
Last reply 3/10/2011 - 12:28pm

Hello! This is my first post amongst all you people of such beautiful energy! Surely, the first of many, considering how grateful I am for all of your inspiring, educational, and deeply connecting words I have been reading over the past six months. What took me so long to finally post, right?

Dad is the patient, and his stats are below. I have a bucket load of questions, but I’ll start with this: Can Dad be treated with Ipi while he's receiving brain radiation treatment, without any waiting period in between or requirement to stop one before starting the other?

We realize that often there is a requested waiting period between radiation treatment ending and Ipi starting according to clinical trial protocols, but since he would be receiving it based on compassionate use, are the clinics required to treat him in accordance with those protocols? It clearly makes sense for clinical trial purposes to have the grace period, but it seems to me that for compassionate use, the waiting has significantly different relevance.

Anyone out there been treated with Ipi infusions while undergoing SRS or WBR, or at least not been required to wait the 14 to 28 day waiting period? Is this the doctor’s decision, or are the clinics under restriction from a compassionate use rule system?

Dad: 81 years old, relatively healthy prior to melanoma, aside from low-grade non-hodgkins lymphoma; stage 4, mets to liver first, then brain; Kaiser patient, temador for one month, little-to-no effect on liver lesions, blood platelets fell to risky level, (platelets eventually increased to safe level); blood clots in lung, as byproduct of melanoma; no prior history of cardiovascular or pulmonary challenges; pursuing compassionate use Ipi, failed B-Raf mutation test; most likely beginning brain radiation treatment this week; hopefully SRS, but possibly WBR.

Thank you! And I'm really looking forward to contributing to this amazingly supportive community!

CZ

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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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