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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Anonymous's picture
Anonymous
Replies 1
Last reply 10/2/2011 - 8:53pm
Replies by: Anonymous

Hi Becky,

Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

It would be greatly appreciated by all of us if you can CONFIRM  if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

Thanks & good luck with your decision for treatment

A.

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nickmac56's picture
Replies 5
Last reply 10/2/2011 - 8:01pm

My wife went in for her second gammaknife treatment to pick off two brain tumors. Her scan was ten days ago. They did the pre-treatment MRI this morning and found three more - all three had emerged during this ten day period. Obviously not a good sign - means the cancer is fast growing up there. She was able to have the gammaknife treatment and they went after all five. They will scan again in 30 days. But likely the next treatment for her head will be whole brain radiation. She's pretty emotionally distraught this evening, even though she came through it fine. No side effects yet, even though one was in the speech center. 

We have the weekend to recover - then she has a golf ball size sub-q tumor on her upper arm removed Monday. Then a week later - maybe start a new chemo. 

This disease is just terrible.

Nick

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/2/2011 - 7:00pm
Replies by: ValinMtl, MariaH

While researching Dave's next step for treatment, I came across this study for MDX-1105.  I'm wondering if anybody out there is on this trial....NCT00729664 

On a side note, Dave's vision improved (after being blind for a week after IL-2) but everything still looks "dark".  He's on 80mg of prednisone and was hoping to stop taking it after his vision returned to normal, but that doesn't seem to be the case yet.  He's still unable to drive.  Even if he does end up being a responder to IL-2, he probably won't do another course.  He goes for scans on 10/25 and  sees Dr. Khushalani on the 10/26 for his results.  Who knows, maybe if he had a good response we can keep it stable for awhile and at least get Dave through hunting season without having to do any treatment.  Of course, that depends on his vision improving as well.  Ugh...

Best wishes to all,

Maria

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jim Breitfeller's picture
Replies 9
Last reply 10/2/2011 - 5:54pm
Replies by: LuckyMan51, Anonymous, jim Breitfeller, MariaH, LynnLuc, sharmon

I just got word that Combinatorial ...Yervoy + BRAF Therapy.. is coming

"t's being assembled. First patients treated sometime in the fall."

This is from a reliable source.

Jimmy B

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beccia1's picture
Replies 1
Last reply 10/2/2011 - 5:11pm
Replies by: Anonymous

how long does it take to get results from genetic testing

 

 

beccia1

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j.m.l.'s picture
Replies 14
Last reply 10/2/2011 - 4:42pm

I have been given the first infusion of IPI. Next one in 2 wks. Side effects manageable. DOES ANYONE HAVE INFO ON THE GOOD EFFECTS OF THIS DRUG. IS IT WORKING FOR YOU. The last tumor is inoperable bec. it lies on a vein.

many thanks

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Terra's picture
Replies 10
Last reply 10/2/2011 - 10:44am
Replies by: Terra, Vermont_Donna, Lisa13

Hi - could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

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Dynasysman's picture
Replies 10
Last reply 10/2/2011 - 9:34am

Just learned that the scans I took yestereday make me NED.  So one year after I first found the lumpy lymph node (Melanoma of Unknown Primary), seven months after a PET-CT revealed a second tumor in the same space (but my ONC misread it), three months after an ultrasound-biopsy confirmed it, I am NED and one-year progresion free.

Look, melanoma is a sneaky, nasty disease, so you never know what comes next.  But for those of you just entering Stage 3 or first discovering an unknown primary, it's not an immediate death sentence.  And for those of you who "got it early", well, maybe you did!

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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djpayn's picture
Replies 6
Last reply 10/2/2011 - 9:18am

Just got my results back and am happy to say that i am now 3 years NED!! and i want to thanks all of my friends for being there for me when i was just starting this journey and all the times since. I really feel i couldnt have made it without all of your support, friendship, and kindness!!

 

Its been a tough year, so many have left us. They will all be missed dearly and remembered fondly.

 

smiles and hugs****

 

dawna

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Lisa13's picture
Replies 8
Last reply 10/2/2011 - 7:23am

I caught my daughters cold yesterday which happens to be the first cold I've had in a year.  I had my 3rd infusion of Yervoy last Thursday and was wondering if being sick and having a weakened immune system (at the moment) is going to affect this drug.  I know we're all bound to get sick during the cold/flu season, but I hate feeling defenseless right now when all I want is a powerful immune system. 

Lisa - Stage 4 - lung mets

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

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Tim--MRF's picture
Replies 1
Last reply 10/2/2011 - 4:02am
Replies by: JerryfromFauq

MRF has established a partnership with Cosmopolitan Magazine.  As part of that we have created a web page for donations.  Anyone who gives $10 or more gets a special bracelet Cosmo designed. 

Here's the neat part.  When you make the donation you have the option of leaving a comment.  The comments people have left are amazing.  Just a few words, but a lot of passion.  We have comments from patients, friends, family members. 

Might be worth taking a minute or two to read through them.  I found it inspiring.  One person is 23 year survivor of Stage III melanoma!

Here's the link:  www.firstgiving.com/cosmopolitan

Tim

 

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LynnLuc's picture
Replies 18
Last reply 10/2/2011 - 4:00am

Two years ago yesterday I had my biopsy at Mayo Clinic and they told me I had stage 4 melanoma. They also said I would be dead in 6-9 months. Happy to report I am still here and still NED. Had my latest scans on June 8 and my booster of MDX 1106!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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deardad's picture
Replies 4
Last reply 10/1/2011 - 11:38pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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King's picture
Replies 25
Last reply 10/1/2011 - 1:04pm

I know we all need to read some good news to balance the bad and sad news that is a reality on MPIP.

I am thrilled to report that I just returned from Moffitt and I remain NED at Stage IV.  My profile is up to date and I'll give a brief summary when I sign off this post.

Yes, I've had ups and downs like so many of us.  Yes, I have some discomfort from the extensive surgeries.  I have challenges with maintaining my weight.  Right now I have a rib fracture that was diagnosed on the scan.  But I am NED.  I wish there was a secret to share.  I know many of you are deep in battle and have to be so discouraged.

It was 6 years ago yesterday that I had my liver resection...70% of my liver was removed.  I was told at that time that if the surgery was not a success (or any of the very limited treatment options back then) that I had 4-6 months to live.

And I now can go 4 months until my next set of scans.

Thinking of all of you.  If I can help in any way, please email me.  Thank you so much for all the support you've given and knowledge you've shared over the 7 years that I now have been on MPIP.

Stay Strong

King/Kathie

March 2004  Stage III Unknown primary

April 2004 Left groin lymph node dissection.....NED

May 2004-April 2005 Interferon

July 2005 Liver mets (3.3 cm. Grew to 4.5 cm at time of surgery)

September 2005 Liver resection/Gall Bladder removal....NED

December 2005-November 2006  Phase II Clinical Trial of GM-CSF

March 2008  Peri-Pancreatic Tumor; sub q on left hip/buttock

April 2008 Extensive surgery to remove both areas of mets....NED

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JerryfromFauq's picture
Replies 4
Last reply 10/1/2011 - 10:47am

http://defeatosteosarcoma.org/2010/07/mistletoe-and-solid-tumors/#commen...

Mistletoe and solid tumors

 

Posted 19 Jul 2010 in General Cancer Research

One of the most obvious differences in the practice of oncology in the United States and in Europe is the differing attitude towards mistletoe (Viscum album). European oncologists have used extracts of mistletoe for the past 90 years and such usage is no longer controversial there. By some estimates, 40 percent of French (Simon 2007) and up to 60 percent of German cancer patients receive this botanical extract (Schönekaes 2003). On the other hand, the use of Iscador and other mistletoe extracts is virtually unknown in the United States. Both Europe and the US have well trained and highly competent oncology communities, yet they differ profoundly on this, as well as a number of other issues concerning cancer treatment. This difference is a vivid illustration of the effects of cultural norms on medical practice (Payer 1998).
Iscador is an extract of the white berries of the mistletoe plant, an unusual evergreen plant that grows as a kind of parasite in trees across Europe. Globular mistletoe is a familiar sight in Germany, especially in the winter when it stands out in the bare branches of various deciduous trees. Mistletoe has a fascinating history. According to Roman authors, mistletoe was used medicinally by Celtic priests, who gathered it using golden scythes (to avoid contaminating the specimens). Much later, Rudolf Steiner (1861-1925), the founder of Anthroposophical Medicine, introduced as a cancer treatment (Steiner 1985).
The key question is whether mistletoe has anticancer effects or not. If it does not, then European doctors should stop using it (or recognize it as a placebo). If it does work, then American oncologists should adopt it as a useful adjunctive therapy. (No one I know regards it as a cure).
Earlier this year, I discussed several positive studies with mistletoe. Since then, several additional studies have added weight to the pro-mistletoe argument. Jessica Burkhart, Stephan Baumgartner, et al. of the University of Bern, Switzerland, investigated the effects of mistletoe on the adverse effects of the drug cyclophosphamide (Cytoxan) in cell line studies. The article appeared in Alternative Therapies in Health and Medicine in May-June 2010. The experiment involved normal white blood cells (peripheral blood mononuclear cells, or PBMCs) as well as a T-cell leukemia Jurkat cell line. Cells were first pre-incubated with mistletoe extract. Then a form of cyclophosphamide was added. After that, mitochondrial activity and replication were both measured.
The results were that mistletoe extract “strongly stimulated” healthy PBMCs but not malignant Jurkat cells. The level of activity of these cells was doubled by the addition of mistletoe (197 percent with the lower dose and 225 percent with the higher dose). In addition, mistletoe partially protected healthy PBMCs, but not malignant cells, from the damage inflicted by cyclophosphamide.
This is further scientific confirmation of the purported uses of mistletoe to reduce the adverse (side) effects of a widely used form of conventional chemotherapy. Mistletoe exerts immune modulating as well as direct anti-proliferative effects. Mistletoe may also increase levels of various anti-cancer cytokines including tumor necrosis factor (TNF-alpha).

This year, at the American Society for Clinical Oncology (ASCO) meeting, Washington DC scientists presented the results of a phase I clinical trial on the use of European mistletoe extracts and the drug gemcitabine (Gemzar) in patients with advanced solid tumors (Mansky 2010).  Gemcitabine and osteosarcoma The product tested was Helixor (not the more common Iscador). These researchers’ conclusions were highly positive. They reported that the combination had limited toxicity, no alteration in gemcitabine uptake, good tolerability and a clinical benefit in 48 percent of patients. (This contrasts well with previously reported levels of benefit from gemcitabine alone.)
They concluded that the addition of European mistletoe extracts “may allow for use of higher doses” of gemcitabine and that the combination of mistletoe and this drug “warrant further study.”
Studies of this sort continue to chip away at the standard American oncologists’ contention that all useful treatments are routinely employed in US oncology hospitals and that any other ways of treating the disease are without scientific validity. This is simply not true. In fact, American oncologists could learn a great deal from CAM practitioners, if they would recognize that other cultures have different ways of approaching the same problems, and that have something valuable to contribute to the optimal treatment of cancer patients

 

 

 

 

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

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