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.

Expand/ Collapse Topic
 
Replies By
View Topic
AlanM's picture
Replies 16
Last reply 10/21/2011 - 7:46am

I had my second infusion of Yervoy on September 7th. About a week after the infusion I started having symptoms of colitis and my doctor started me on prednisone. I continued increasing the dose over the course of a couple of weeks until I was up 100mg per day with worsening symptoms (no perferation but believe me they were bad) to the point where I was checked into the hospital for a three day stay! While there they gave me a single dose of Imfliximab (Remicade) which finally had me turn the corner and relieve the symptoms.  Over the last two weeks I have been gradually reducing the steroid dose and yesterday was my final dose!  Given my reaction to the last infusion my doctor does not recommend another infusion. He told me that I shouldn't be thinking in terms of the number of doses, rather I should feel assured that my immune system was revved up by the two that I received. 

Have others here had good/lasting results with an abbreviated cycle of Yervoy? 

Alan

 

Login or register to post replies.

CAdesiree's picture
Replies 2
Last reply 10/16/2011 - 2:00pm
Replies by: CAdesiree, Charlie S

i was stage 1b at biopsy... intially mohs was performed.  i saught a second opinion... that dr said he saw satellite.  i underwent a resection & snlb.  they took a total of 7 nodes to test, 3 from one side, 4 from the other.  one came back with micro mets.  i don't know how to proceed...  fortunately the area that was resected was cancer free... but my node was not.  i am to speak w my onc and ask about gentetic testing, a complete axillary dissection, or systemic therapy like interferon or other chemo...  i am a little overwhelmed trying to look into all of these options so i am informed when speaking w my onc.  plus, i kinda freaked out hearing there was any mets, micro or not and didnt get my path report... i plan to do that monday.  in the meantime any experience, guidance or suggestions are greatly appreciated.  thanks in advance!!!

Login or register to post replies.

cwu's picture
Replies 10
Last reply 10/18/2011 - 10:39pm

Dad had his second dose of Yervoy on Monday.  Yesterday he experienced mild diarrhea and dizziness.  He had a little diarehea after his first dose three weeks ago and the nurse told us that he could take Immodium.  Yesterday's diarrehea was very mild so he didnt have to take Immodium and it went away.  However, his dizziness continues today and I called the nurse.  Was told to monitor him and if his dizziness gets worse or doesnt go away, we should take him to the MD Anderson ER to get him checked out.  His dizziness is off and on.  I read on the Yervoy medication pamphlet that dizziness is a symptom of problems with thyroid or pituitary glands.  He doesnt have any other symptoms other than dizziness.  Has anyone experienced this and if so when should I take him to the hospital? What medication did they give you to treat dizziness? I want to keep him safe since Yervoy side effects can be very serious but on the other hand i dont want to freak out and make numerous visits to the hospital.

Thank you.

Chau

Login or register to post replies.

Jeannie C's picture
Replies 9
Last reply 10/17/2011 - 9:10am
Replies by: Jeannie C, LynnLuc, Anonymous, Janner, Jamietk, jackiewin

I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ???? I always thought melanoma was an "external" cancer, not something that could affect the brain, lungs etc??? Do I need to seek out another doctor?

Life is, you are, be. The great cosmic imperative is to simply be.

Login or register to post replies.

nickmac56's picture
Replies 4
Last reply 10/15/2011 - 8:57am
Replies by: nickmac56, FormerCaregiver, Anonymous, lhaley

For several weeks my wife has had numbness and tingling in her right arm. She had an MRI three weeks ago and nothing turned up - they focused that scan on the cervical spine (neck) due to her history of spinal tumors in the lumbar region of her epidural column. Two days ago she woke up and had extreme pain - 6-7 on a 10 scale. She's on pain meds and increased dose of steroids now and that seems to have helped so far. The MRI yesterday of two areas, the brachial plexus and chest, turned up nothing. Our doc said, "not sure where we stand". Hard for me to believe it's a pinched nerve without a cause. With her tumor history you'd think one is lurking and hitting a nerve somewhere. Anyone have any ideas I can pass along to our oncologist?

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.

shellebrownies's picture
Replies 9
Last reply 2/23/2012 - 8:47am

Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.

Don goes in today for his first infusion of Yervoy. They are still working on how soon he will start radiation treatments.

Does anyone here have anything they can tell me about side effects and/or effectiveness of Whole Brain Radiation?

Thanks!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

Login or register to post replies.

benp's picture
Replies 2
Last reply 10/14/2011 - 4:02pm
Replies by: Gene_S, benp

 

 

 Eleventh International Conference on Progress in Vaccination Against Cancer 

 10 - 13 October2011 Copenhagen, Denmark

Dr.Thomas Gajewski

University of Chicago, Chicago, IL, USA

Immunotherapeutic approaches for the treatment of melanoma, such as tumor antigen-based vaccines, can frequently boost immune responses. However, clinical responses as measured by tumor shrinkage are seen in only a minority of patients. This observation has prompted careful analysis of the tumor microenvironment for biologic correlates to clinical response and also to identify mechanisms of tumor resistance. Patients with advanced melanoma treated with antigen-specific vaccines had pre-treatment tumor biopsies analyzed by gene expression profiling. Supervised hierarchical clustering was performed based on clinical outcome. An expanded bank of tumors was analyzed to increase the sample size and better understand gene patterns.

Two major categories of melanoma metastases have been observed.

 

One subgroup of patient has an inflamed phenotype that includes expression of chemokines, T-cell markers, and other immunoregulatory factors. Clinical responders to melanoma vaccines appear to fall within this subset. This group also contains the highest expression of negative regulatory factors, including PD-L1, IDO, and FoxP3, suggesting that these immunosuppressive mechanisms may dominantly inhibit anti-tumor –cell function in those patients. In addition, absence of B7 expression supports classical T-cell anergy. Preclinical experiments have confirmed a critical role for these mechanisms in limiting anti-tumor T–cell efficacy in vivo, giving candidate treatment strategies for translation back into the clinic.

 

A second subset of patients is represented by tumors which are non-inflamed and lack chemokines for T cell recruitment. Therefore, a major barrier in these cases appears to be failed  T–cell migration into tumor sites. Experimental strategies to augment T-cell migration can have important anti-tumor effects in preclinical models. The presence of the "inflamed" gene signature was associated with a type I IFN transcriptional profile, and murine experimental models have confirmed a critical role for type I IFN signaling in promoting adaptive immunity.

So one subset tumors has  a suppresive nature that may be over riddden by Anti-CTLA-4 (Yervoy) and or Anti-PD-1 Therapy

The second subset is missing the "danger signal"

 

Cytokines are small proteins which allow cells of the immune system to communicate with one another via cytokine receptors expressed at the cell surface.

Activated macrophages defend against tumors by secreting cytokines to recruit secondary immune cells, presenting antigen to T cells, and by direct tumor cytotoxicity. Peritoneal macrophages harvested from melanoma-bearing mice are less cytotoxic to melanoma cells, and produce less superoxide, nitric oxide, and tumor necrosis factor-alpha (TNF-alpha) than those from nontumor-bearing mice. Similar impairment of macrophage activation occurs in vitro using media harvested from cultured melanoma cells.

Stimulation of Toll-like receptor 4 (TLR-4) activates macrophages and results in the release of TNF-alpha. It is hypothesized that melanoma inhibits macrophage activation by suppressing TLR-4 signaling.

http://2.bp.blogspot.com/-4TLHwjIx_XU/TpSCg80EcVI/AAAAAAAAAh4/j_EKCkplea4/s1600/Danger%2BSignal.jpg 

Cytokines are small proteins which allow cells of the immune system to communicate with one another via cytokine receptors expressed at the cell surface.

Activated macrophages defend against tumors by secreting cytokines to recruit secondary immune cells, presenting antigen to T cells, and by direct tumor cytotoxicity. Peritoneal macrophages harvested from melanoma-bearing mice are less cytotoxic to melanoma cells, and produce less superoxide, nitric oxide, and tumor necrosis factor-alpha (TNF-alpha) than those from nontumor-bearing mice. Similar impairment of macrophage activation occurs in vitro using media harvested from cultured melanoma cells.

Activated Macrophages secrete the following cytokines under different conditions:

IL-1,IL-12,IL-6, IFN -gamma and TNF-alpha

 

 

 

So, if Melanoma suppresses Macrophage Activation, then the tumor microenviroment is missing IL-6 and other cytokines. 

Interleukin 6 is a pro-inflammatory cytokine and is produced in response to infection and tissue injury. IL-6 exerts its effects on multiple cell types and can act systemically.

IL-6 stimulates liver secretion of acute phase proteins

IL-6 stimulates liver secretion of acute phase proteins

IL-6 stimulates B-lymphocytes to produce antibodies

IL-6 in concert with IL-1 causes T-cell activation

IL-6 induces STAT 3 Signaling

IL-6  Plus TGF-b induces the Th17 cell phenotype

http://4.bp.blogspot.com/_QjnhWpqRSpg/TJYpQ_j4XrI/AAAAAAAAASk/3zRkLayHDkk/s1600/Differences+in+Functional+profiles.jpg 

If you look at the above  micrographs, you will see that the two patients that had Relapsed (10710 and 10737) had IL-1b and IL-6 missing. The  Macrophages were not activated!!!! The "Danger Signal " known as inflammation was missing!

The missing combination of IL-1 and IL-6 meant no T-cell activation. And no induction of the Th17 phenotype. It is now becoming a lot more clearer based on Dr. Gajewski's findings.

Login or register to post replies.

travers's picture
Replies 5
Last reply 10/13/2011 - 8:15pm

This week I got the biopsy report. Both biopsies came out melanoma.  This was a shock to me. My dad has been battling basal cell for 40 years, so I assumed that would be my diagnosis also.  The good news is that it is in situ. I am trying to gather information.  My dermatoligist removed the moles but I am going in next week to a skin cancer surgeon for surgery.  I am not completely clear on what the surgery is except that it will be painful.What should I expect?  Both moles were on my inner thighs but on different legs.  Is that normal? To have 2 moles that are both melanoma?  Once I have had it will it come back?  Sorry for all the questions.

All things work together for good to those that love God

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 10/13/2011 - 8:28pm
Replies by: jax2007gxp

Been thinking about  you. How did your appts go with the surgeon & Onc?

Mary

Login or register to post replies.

Anonymous's picture
Replies 10
Last reply 10/20/2011 - 11:41am
Replies by: Anonymous, bcl, Harry in Fair Oaks

But there is a question as to what capacity.  ANyone heard anything?

Login or register to post replies.

Jamie's picture
Replies 4
Last reply 10/14/2011 - 4:43pm
Replies by: Lisa13, jcraigdawson, Jamie, Anonymous

I have been NED 3 years. I had a PET/CT scan 1 month ago which revealed a "subcentimeter lung nodule" with SUV of 2.3....Doc said wait 3 months for further testing..Doc said not to stress it, so does that mean it's probably bening in nature or is there a bigger prbability it could be reaccurence(spelling)??? Any thoughts, or info is appreciated. Thanks ahead of time!    Jamie Stage 3a

Login or register to post replies.

fdess056's picture
Replies 2
Last reply 10/13/2011 - 7:55pm

January 2010 showed by Doc a large freckle on my forehead.  He totally dismissed it.  8 months later it looked like  a mole & was dry and itchy.  Dermatologist diagnosed stage 3C Dec 2010.  Had surgery to remove mole, positive parotid gland and 16 lymph nodes (2 positive)   Had radiation and Interferon.  After 22 months cancer free, recent PET showed melanoma in left tibia near knee.  Had stereotactic radiation surgery 2 weeks ago.  Waiting for next PET in December and BRAF results.    Being treated at North Shore LIJ/Monter Cancer Center. 

Login or register to post replies.

JerryfromFauq's picture
Replies 1
Last reply 10/12/2011 - 7:31pm
Replies by: jim Breitfeller
I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

Lisa13's picture
Replies 4
Last reply 10/13/2011 - 12:15am
Replies by: FormerCaregiver, momof2kids, Anonymous

My final ipi infusion is tomorrow and I just had bloodwork done today. My lymphocytes are up again from 225 to 258 which my Dr said is really good. Let's hope they keep going up once this final infusion is administered.  My LDH is up again but my Dr isn't concerned. It seems to go up, down, then up and down again, so if he's not worried, neither am I. Perhaps my lung nodules are inflammed from the attack of my immune system :)

I'm holding my almost 2 year old daughter while I'm typing this and pray that this drug will work for me for a long time.

Lisa

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

Login or register to post replies.

Pages