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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sedona's picture
Replies 2
Last reply 1/31/2012 - 5:42pm

My doctor wants me to see an oncologist and have a PET CT at a good medical center. I live in Escondido, not far from San Diego. Is there anyone here with some personal experience in the area? I'd appreciate any help, thanks.

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zaccarin's picture
Replies 1
Last reply 1/31/2012 - 10:13pm
Replies by: jag

IArticle title: "Complete Remission of Brain Metastases in three Patients with Stage IV Melanoma Treated with BOLD and G-CSF

http://jjco.oxfordjournals.org/content/35/9/507.full

The above journal article, based on the work of Italian researchers, reports a successful treatment for brain mets. I am posting it because perhaps some of you might wish to discuss it with doctors. I hope this can help someone.

Complete Remission of Brain Metastases in Three Patients with Stage IV Melanoma Treated with BOLD and G-CSF

  1. Ugo Bottoni1,
  2. Paola Bonaccorsi2,
  3. Valeria Devirgiliis2,
  4. Vincenzo Panasiti2,
  5. Riccardo Giovanni Borroni2,
  6. Guido Trasimeni3,
  7. Rita Clerico2 and
  8. Stefano Calvieri2

+ Author Affiliations


  1. 1Department of Dermatology, University of Catanzaro, Magna Graecia, 2Department of Dermatology, University of Rome, La Sapienza and 3Department of Radiology, General Medicine I, University of Rome, La Sapienza, Italy
  1. For reprints and all correspondence: Ugo Bottoni, Department of Dermatology, University of Catanzaro, Magna Graecia, Via Sinopoli, 9, 88100 Catanzaro, Italy. E-mail: ugobottoni@unicz.it
  • Received April 13, 2005.

Abstract

 

Methods: Accidentally, we observed a complete response (CR) in a patient undergoing chemotherapy with bleomycin, vincristine or Oncovin, CCNU or lomustine, dacarbazine (BOLD) regimen for metastatic melanoma including brain metastases, who was also treated with G-CSF to manage a concomitant leukopenia. After this observation, seven more patients with stage IV melanoma with brain metastases were treated with BOLD regimen repeated every 6 weeks with administration of G-CSF in the intervals.

Results: Three patients presented CR (37.5%). Two patients stopped the treatment after two courses for evident progressive disease (25%). The other three patients showed stable disease (SD: 37.5%). Median duration of SD was 24 weeks. Among the eight patients, six (75%) achieved clinical benefit. Median time to progression was 8.5 months (range 0–74+ months). Median survival was 12.5 months (range 4–74+ months). Two patients are still alive and disease-free after 74 and 57 months, respectively.

Conclusion: We believe that the brilliant CR, the long duration of the disease-free intervals and the long survival in at least three of eight patients should encourage further research on BOLD with G-CSF for the treatment of advanced melanoma.

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Replies by: LynnLuc

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

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Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

KellieSue's picture
Replies 4
Last reply 2/2/2012 - 1:29am

I'm starting cycle 2 of clinical trial,
I can't seem to paste the trial. It is under the U of Iowa clinical trial cancer page.
Title 07-08-01-50; Phase I/II Study Epigenetic Modification of Chemosensitivity and Apoptosis in Metastatic Melanoma: Treatment of a Resistant Disease Using Decitabine, Temozolomide and Panobinostat

I start getting 2 shots of Decitabine week one and week two M,W, F. I got to the Clinical cancer center for the shots.
Week 2 I also takeTemodar day 2 thru day 5 in the evening at home.
And I also take Panobinostat at home every 4th for 8 days(i think)
I am on week 2 of cycle 2 now.

I am doing good except for am still dealing with some edema from the brain tumor. I'm being weaned from steroids. I have a follow up MRI on Feb. 7. We're all hoping that the tumor has shrunk( from radiation) and there are no new tumors and the edema has resolved. I'm worried about being on the steroida for so long and am hoping the MRI is an improvement from last one.
The steroids are hard since I don't sleep well so I'm hoping theres good news next week.

My right side still continues to improve from the stroke. I keep getting more feeling on that side and it makes me feel that I can keep improving. I use a cane now and walk as much as and still practice all mt OT and PT.

I'm really trying to be positive about the trial. I feel that it could do some good things.

I guess thats it for now. Thanks for reading and caring.

Kellie( from Iowa)

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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aldakota22's picture
Replies 4
Last reply 2/11/2012 - 3:06am

  Been on Zelboraf since 9/12/2011.Are there any patients with a long history taking the drug out there?Bee  working as a miracle drug for me with  just nuicance side effects. What side effects have others had? Thanks for input

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See Melanomaforum.org for further info

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heg50heg's picture
Replies 5
Last reply 2/10/2012 - 1:52pm

Hello, I was wondering if any one could tell me what kind of symtons one may have when melanoma returns or spreads. I am currently stage 3 after having a primary  rmoved from right arm in Nov. 2010, wide excision surgury and 36 nodes removed from armpit. Lately I have been having slight headaches and for the last 5 days or so some stomach dicomfort,especially after eating something. Fatige and feeling tired alot to as I can sleep for 8 to 10 hours and wake up feeling like I had just gone to bed. See my oncologist lat in feb. and almost feel I should see him earlier. Ct scan of chest and abdomen looked good just over 3 months ago.

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lna426's picture
Replies 11
Last reply 2/3/2012 - 1:31am

Hi all - 

In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!

I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.

Thanks!

I never asked "why me?"...I asked "why not me?". And my answer? Because I knew I could.

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sedona's picture
Replies 4
Last reply 1/31/2012 - 12:02pm
Replies by: sedona, lhaley, Webbie73

Well here goes, I hope I do this right.

I had a mole removed  on my shoulder just over 3 years ago. The diagnosis was IIa. Am I cured or do I have cancer? 

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speckles's picture
Replies 13
Last reply 2/1/2012 - 9:56pm

I was diagnosed w/level 3 malignant spreading melanoma in 2009. I was told after the removal of tumor &lymph nodes, stadge lla it seems that the drs aren' t to concerned about follow up! Should I request pet scan or lab to see if anything is going on that I can't see? why do alot of people act like melanoma is no big deal?

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