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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James from Sydney's picture
Replies 2
Last reply 2/20/2012 - 10:33pm
Replies by: Mike N, jim Breitfeller

For those of you down under we are organising our inaugural Melanoma walk on March 25 to raise funds for The Melanoma Institute of Australia. They intend to map the entire Melanoma Genome from the largest tissue bank in the world, held at the Institute, they hope to identify all possible Mutations. 

melanomamarch.com.au is the site to register to walk and if you like set up a fundraising page. Melanoma is now the most common Cancer in Australia in the 15 to 44 year age group.

best wishes 

James

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bruski1959's picture
Replies 6
Last reply 2/20/2012 - 8:25pm

The Yervoy was shipped via Fedex and arrived at the hospital this morning by 10:30 AM. Pastor's wife Virgie took Jackie for her appointment. They took an x-ray of her port, and they will do that before every infusion apparently. My class in Schaumburg, IL got out at noon, so I got to the cancer center a little after 1 PM, and was able to relieve Virgie. They gave Jackie benadryl and a couple of anti-nausea medications prior to the Yervoy, and then transfused the Yervoy for 90 minutes, following by a flush. So we got Jackie home a little after 3 PM from her noon appointment. The benadryl made her sleepy, so she rested when we go home. So far there doesn't seem to have been any side effects, but we will keep an eye out for them.

Jackie's next infusion is scheduled for 2/24. Jackie goes back to the Cancer Center every Wednesday for blood tests.

 

We're glad to have have finally gotten Jackie started on the Yervoy treatment. We're praying that Jackie tolerates the treatment well, that the Yervoy slows down the melanoma, and shrinks the melanoma tumors.

 

Thanks for your thoughts and prayers!

 

Bruce and Jackie

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himynameiskevin's picture
Replies 12
Last reply 2/20/2012 - 3:29pm

Well the most recent CT scan show the tumors in my lungs are still progressing since my last scan on Jan 9th. Some at faster, more alarming rates, and some not so much. Not the news I was hoping for, but, it is what it is, just another little speed bump. I’m in a tricky spot right now. On one hand, as unlikely as it seems, I guess the Yervoy could essentially still kick in any minute, it's been 2 months since my final dose. On the other hand, things are getting worse, and waiting for something that’s unlikely and may not happen may not be in my best interest. Some would say wait it out, some would say move on, and they are.

As suggested by both of my oncologists, before finalizing a decision to wait it out or go with zelboraf, I spent the last 3 days getting every bit of attainable information (disks, written reports, lab notes) of all recent treatments and medical history together and contacted my most recent doctor and team at the National Institute of Health with a brief update of what has been going on, in hopes that maybe they’ll have a trial or an idea we could both benefit from. Maybe they could hit me with the ACT again, as intense as it was, I would love another shot. Or maybe they've got something new to try, something I'd seem like a good candidate for. She agreed to look them over, discuss any options with the team and get back to me. Personally the thought of going back there, just makes my heart warm. At this exact time last year, I was on the mend because of their help, I remember the feeling, and the thought of possibly feeling like that again is... well it makes me smile, a true smile of unabashed happiness and hope. I know the chances of them accepting me for something aren't that great, but with all my history there, and a bit of much needed luck, maybe they will. We'll see. I fed-exed everything yesterday at the fastest rate possible, and hope to hear from them early this week. As always, this waiting in uncertainty is the hardest part, but I’ll be ok.

On a lighter note, I still feel fine, no pain, trouble breathing, nothing too abnormal from what I can tell. Of course there's some anxiety and nervousness, but during times like these I'm sure it's a pretty normal human reaction and will pass as soon as a plan is in course. 

Hopefully I'll have a plan and something beneficial to look forward to in the coming days. Until then, thank you all for the ongoing support and help though these stressful times. It means so much.

I'll talk to you soon.
-Kevin

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Lisa13's picture
Replies 6
Last reply 2/20/2012 - 2:38pm
Replies by: Maxximom, kylez, Anonymous, boot2aboot, LynnLuc, WendyPam

I'm starting ipi again on Friday - has anyone heard of the percentage of numbers for reinduction?  I've heard they're better used by responders, but I just have no idea.  There seems to be many different numbers, so it's hard to understand what it could be.  Half the time, I can't understand why a medicine wouldn't work if it worked before, but nobody seems to know this clinical drug very well.

Also, where in the U.S. are they having the cinical trial for Anti PD1 - Bristol Meyers? Apparently this one has been doing very well, but there isn't alot of these out there.  So confusing!  In Canada, we'll have Anti PD-1 (Merck) in 2 months, but I'm not even sure if this is going to be as good. 

One last thing, my Dr talked about a new clinical trial for brain mets coming available, so when I here about this, I'll be letting you all know.

Lisa

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

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Kellie-T's picture
Replies 2
Last reply 2/20/2012 - 1:46pm
Replies by: Kellie-T, aldakota22

Anyone taking Zelboraf get chills? I disn't see that one on the list of side effects.

Life is not by accident. Make every minute count.

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ElaineLinn's picture
Replies 5
Last reply 2/20/2012 - 12:07pm

This battle began about 3 years ago, my first bout with melanoma was a mole on my back that my family dr. said was nothing and one day when he wasn't busy we would remove it. But in the mean time 3 months down the road I was having surgery to remove a nodule on my voice box, My ENT dr. saw the mole and asked me if he could remove it while he had me under working on my voice box and of course I said yes. 2 days later  this Dr calls me to come in for the TALK . I was sure I had throat cancer, but what he told me even shocked me worse. The mole was Melanoma and I had to have the wide extraction. He sends me straight from there to James Cancer Center in Columbus Ohio for the wide extraction. This surgery went fine, but it was in a bad place on my back and would not heal. I just knew something was wrong but no one would listen. 1 year later I had a hymnodies swell in my neck, AGAIN my family Dr. said it was nothing just caused from and infection. I let it go for about 6 months until it became almost impossible to move my left arm and decided to take a trip to quick care, and this dr. is the one to inform me that my cancer had spread to the hymnodies. Back to James Cancer Center for another surgery to remove the tumor and all surrounding nodes. Dr. Agnes removed 48 nodes and only 1  checked out for Melanoma, on to the oncology for Leukine treatments. After 5 months of treatments all was going so good [or so I thought] I was getting my strength back and was moving my arm very well. But yet again a routine trip to a NEW family Dr. because of kidney stone symptoms, he order a CT scan of the abdomen where they accidently got part of my lower lung and found 2  spots on my lung. This lead to a CT scan of my full lung that show 15 spots on my lungs. I was really floored. But once again back to Dr. Agnes who tells me that it is in operably because of the number of spots, so the next meeting was with my oncology Dr. Kendra , and we decide to try the IPI infusion. I had my first treatment on Feb. 4th , no side effects other than itchy skin which I can deal with. But I must admit I am VERY scared because I have been told that this drug only works in 20 out of 100 people. I am a mother of 4 adult children and  have 7 grandkids, which I have had custody of 3 of them for over a year.  I want to be around to raise these little ones, but I am not sure I made the right choice in treatments.

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Feb. 20, 2012 06:00 UTC

Plexxikon Announces European Approval of Zelboraf® for the Treatment of Patients With BRAF Mutation-Positive Metastatic Melanoma

BERKELEY, Calif.--(BUSINESS WIRE)-- Plexxikon Inc., a member of Daiichi Sankyo Group, today announced that the European Commission has approved Zelboraf® (vemurafenib) for the monotherapy treatment of adult patients with BRAFV600 mutation-positive unresectable or metastatic melanoma. The cobas 4800 BRAF V600 Mutation Test, a companion diagnostic used to identify patients with the BRAF mutation, is CE marked and commercially available in Europe. Zelboraf is designed to selectively inhibit the BRAF mutation that occurs in about half of all cases of melanoma.

Zelboraf and its companion diagnostic have already been approved in the United States, Switzerland, Israel, Brazil, New Zealand and Canada. In the United States, Zelboraf is being co-promoted by Daiichi Sankyo, Inc. and Genentech, a member of the Roche Group. Roche promotes Zelboraf outside of the United States.

“The approval of Zelboraf by the European Commission marks a significant advancement for European patients with metastatic melanoma who historically have had very limited treatment options,” said K. Peter Hirth, Ph.D., chief executive officer of Plexxikon. “We are very pleased that our strategy to co-develop Zelboraf along with a companion diagnostic helped accelerate the availability of this personalized medicine for these patients.”

BRIM3

BRIM3, a global, randomized, open-label, controlled, multicenter, Phase 3 study, compared Zelboraf to dacarbazine (chemotherapy), in 675 patients with previously untreated BRAFV600E mutation-positive, unresectable (inoperable) or metastatic melanoma. The endpoints for BRIM3 were overall survival (OS) and investigator-assessed progression-free survival (PFS). Other endpoints included confirmed investigator-assessed overall response rate.

In January 2011, the data safety monitoring board for BRIM3 recommended termination of the BRIM3 study due to compelling efficacy data, and further recommended that study patients receiving chemotherapy have the option to cross over to the vemurafenib treatment arm.

  • The pre-specified interim analysis of BRIM3 showed the risk of death was reduced by 63 percent for patients who received Zelboraf compared to those who received standard first-line treatment (hazard ratio [HR]=0.37, p<0.0001).
  • In a post-hoc analysis of BRIM3 data with a longer follow up compared to previous analyses, including cross-over of patients from the chemotherapy treatment arm to the Zelboraf treatment arm, Zelboraf significantly improved survival by providing a median overall survival of 13.2 months compared to 9.6 months for those who received chemotherapy. Historically, patients with metastatic melanoma have had a median survival of six to 10 months. This analysis showed the risk of death was reduced by 38 percent for patients who received Zelboraf compared to those who received chemotherapy (hazard ratio [HR]=0.62, p<0.0001).
  • At 12 months, 55% of patients who received Zelboraf were alive, as compared to 43% of patients who received chemotherapy.

In the single arm BRIM2 study of previously treated patients, Zelboraf treatment also showed a survival benefit compared to historical control data. These data are expected to publish shortly.

Marketing authorization submissions for Zelboraf are currently under review by health authorities in Australia, India, Mexico and other countries worldwide.

Important Safety Information about Zelboraf (vemurafenib)

This information does not take the place of the patient talking to his or her doctor about their medical condition or their treatment with Zelboraf.

Zelboraf is a prescription medicine used to treat a type of skin cancer called melanoma that has spread to other parts of the body or cannot be removed by surgery, and has a certain type of abnormal “BRAF” gene.

Zelboraf may cause a type of skin cancer called cutaneous squamous cell carcinoma (cuSCC), that usually does not spread to other parts of the body. Patients should check their skin and tell their doctor about skin changes including a new wart, a skin sore or reddish bump that bleeds or does not heal, or a mole that changes size or color.

While taking Zelboraf, patients should avoid going out in the sun. When patients go outside, they should wear clothes that protect their skin, including head, face, hands, arms and legs. They should use lip balm and a broad-spectrum UVA/UVB sunscreen with SPF 30 or higher.

Possible serious side effects of Zelboraf include severe allergic reactions; severe skin reactions; changes in the electrical activity of the heart called QT prolongation, which can potentially be life-threatening; abnormal liver function tests; eye problems; or new melanoma lesions.

Common side effects of Zelboraf include joint pain, rash, hair loss, tiredness, sunburn or sun sensitivity, nausea, itching or warts.

These are not all of the possible side effects of Zelboraf. Patients must tell their doctor if they have any side effect that bothers them or does not go away. For more information about side effects, patients should ask their doctor or pharmacist.

Patients should call their doctor for medical advice about any side effects. Patients or their caregivers are encouraged to report negative side effects of prescription drugs to the FDA at 1-800-FDA-1088 or at www.fda.gov/medwatch. They may also report side effects to Genentech at 1-888-835-2555.

Patients should read the Zelboraf full Prescribing Information and Medication Guide for additional important safety information at www.zelboraf.com.

About Zelboraf (vemurafenib)

Vemurafenib is a novel, oral small molecule, which was approved by the FDA in August 2011 and is being marketed in the U.S. as Zelboraf for the treatment of patients with BRAFV600E mutation-positive inoperable or metastatic melanoma as detected by an FDA-approved test. Zelboraf also has been approved by the European Commission, and in Switzerland, Israel, Brazil, New Zealand and Canada. Zelboraf is not recommended for use in melanoma patients who lack the BRAFV600 mutation. Plexxikon utilized its structure-guided chemistry platform to discover vemurafenib, and initiated clinical development in 2006. Shortly thereafter, Plexxikon and Roche signed a collaboration agreement to co-develop vemurafenib.

The cobas 4800 BRAF V600 Mutation Test, a DNA-based companion diagnostic used to identify patients whose tumors carry the BRAF mutation, was simultaneously approved in the U.S., and is CE marked and commercially available in Europe. Roche Molecular Diagnostics developed the cobas 4800 BRAF V600 Mutation Test following a 2005 agreement with Plexxikon.

Studies of vemurafenib in combination with other approved and investigational medicines as well as in other tumor types are being conducted. More information about ongoing vemurafenib studies is available at www.clinicaltrials.gov (in the U.S.) or www.clinicaltrialregister.eu or on the Roche Clinical Trials Registry at www.roche-trials.com (in the EU). Genentech can also be contacted by calling the company’s clinical trial call center at 1-888-662-6728 or emailing Genentech@druginfo.com.

About Melanoma and BRAF mutation

Melanoma is the most serious type of skin cancer and is growing at a rate of about five to six percent annually. More than 75,000 people in the U.S. and 160,000 people worldwide are diagnosed with melanoma each year. It is one of the deadliest cancers, with a five-year survival rate of 15 to 20 percent for people with advanced (Stage IV) melanoma, according to the American Cancer Society.

Risk factors for melanoma include a positive family history of melanoma, prior melanoma, multiple clinically atypical moles or dysplastic nevi, inherited genetic mutations, fair skin and sun exposure. However, melanoma can occur in any ethnic group and also in areas of the body without substantial exposure to the sun.

The BRAF gene is a key component of a pathway involved in normal cell growth and survival. BRAF mutations may lead to uncontrolled cell growth, and are thought to occur in about half of all cases of melanoma and eight percent of all solid tumors.

About Plexxikon

Plexxikon, a member of Daiichi Sankyo Group, is a leader in the structure-guided discovery and development of novel small molecule pharmaceuticals to treat human disease. The company’s lead drug Zelboraf (vemurafenib/PLX4032) was approved by the FDA in August 2011, and is being co-promoted in the U.S. by Daiichi Sankyo Inc. and Genentech. The company is developing a portfolio of clinical and preclinical stage compounds to address significant unmet medical needs in oncology, as well as in several other therapeutic indications. Plexxikon’s Scaffold-Based Drug DiscoveryTM platform integrates multiple state-of-the-art technologies, including structural screening as a key component that provides a significant competitive advantage over other drug discovery approaches.

 

Contacts

Plexxikon Inc.
Kathleen Sereda Glaub, +1-510-647-4009
President
kglaub@plexxikon.com
or
For Plexxikon
Susan Kinkead, +1-415-751-3611
susan@kinkeadcomm.com
or
Jennifer Cook Williams, +1-360-668-3701
jennifer@cwcomm.org

 

Source: Plexxikon Inc.

 

View this news release online at:
http://www.businesswire.com/news/home/20120219005025/en

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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NYKaren's picture
Replies 7
Last reply 2/19/2012 - 8:16pm

 

I just got home from seeing Dr. Wolchok at Sloan.  As I've mentioned, while awaiting an Anti PD-1 trial, I've been getting my spreading mets frozen and applying Aldera.  the entire side of my face from my scalp onto my neck, where the mets are, is a red, swollen mess, but the treatment seems to be keeping the mets in check.  Obviously, the derm (Dr. Halpern) cannot keep chasing the mets as they spread, but they're pleased at the stop-gap measures.  There's a lot of pain involved, and I'm taking 10 mg. of Oxy on the days I use Aldera (about 2 doses/day.)  

In the past 16 months, I've had WLE and negative SNB, 3 months later, recurrence w/met. satellites, putting me at Stage IIIc, radition, which stopped the spread for 1-2 months, then I was one of the first "commercial" users of Ipi (Yervoy) after its FDA approval.  I was a partial responder, then stopped responding.  Then 2 rounds (4 weeks total) of IL-2; i responded at first, which, in retrospect, I believe was due to the Ipi, then I did not.  I am not a cry-baby; I took all the IL-2 bags and they were all quite impressed.  But the pain from this Aldera/freezing is knocking me on my butt!

So the next step was supposed to be an anti pd-1 trial.  Curetech rejected me because I'm not Stage IV. I am Stage IIIc unresectable.  As we know, maybe that rejection was a good thing.  So, NOW, Dr. W's planning on Ipi reinduction (starting the approval process tomorrow.)  

If I do not respond to Ipi, ta da, here's the news:  BMS has changed its _____(i forgot the word he used) and in ABOUT 2 months, he expects BMS's PD-1-only, without prior Ipi exclusions, trial to open.  He had no news about Merck, except they're going through issues (not medical, more like funding, internal stuff, etc.)   I asked him which drug is better, and he said he thinks they are both good and has heard positive results from both.  Regarding prior ipi use for BMS, there will be a narrow window, so he thinks our timing might be good.  I don't really know what that window will be, but we need to all stay tuned. 

LSorry this is so long; I hope it can be of some help to us.

All the best,

karen

Don't Stop Believing

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arnat's picture
Replies 5
Last reply 2/19/2012 - 6:45pm

My 89 yr. old mother was recently diagnosed with stage III melanoma.  She is due to have a tumor removed on her leg (calf), the lymph node in the groin removed and a skin graft for the calf area.  She will have a wound vac.  My mom lives with me and I am her primary caregiver.  She has dementia which complicates things.   I am having a very difficult time dealing with her going to a nursing facillity after the surgery.  I am afraid that she will be over-medicated and never come home.  Is this post- surgery wound care something I would be able to take care of at home?  Her medicare would send a nurse to the house.  Or would she be better off in a skilled nursing facility? 

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Maxximom's picture
Replies 19
Last reply 2/19/2012 - 5:28pm

Well my adventure into the Brave New World of Melanoma started yesterday with my first Ippi treatment in Columbus at the James Cancer Center at OSU. Any hints at what to expect or any suggestions would be appreciated.The infusion went fine..so far no side effects.. but then it's only been less than 24 hours. Keeping my fingers crossed that this will work and the side effect will be at a minimum. Happy Valebtines day to All of you

Joan

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himynameiskevin's picture
Replies 10
Last reply 2/18/2012 - 4:44pm

Well I had a CTscan of my chest/abdomen a couple hours ago to see if I am hopefully a late responder to the Yervoy I finished on Dec 20th. Maybe hear word tomorrow or Monday. Not sure if this is still too early to tell, but it'll give some comparison to what was shown on the scan from Jan 9th. I've heard about it possibly taking up to 5 months to show results, not sure if from first dose or last dose, but probably varies from person to person. Physically I feel pretty good, no pains or anything abnormal, my 4-month itchy-throat cough has subsided and my slight sensation of paralysis in my left hand is pretty much gone too.  Hopefully a good sign the SRS was effective. Mentally though, this last week has been the hardest since all this started. Although unlikely it will happen again with the SRS and temporary medication, the second seizure, as mild as it was, has made me a little paranoid, a bit worried or concerned, thinking "but what if it does happen again?" "what if I'm alone?"  I'm sure these feelings are natural and will pass with time, peaks and valleys have always been a part of the territory dealing with this, I remind myself I’ve been through valleys before, and I made it though, and then enjoyed the peaks. I've had so many wonderful times during the course of all this. I'm sure most of this unsettling feeling is just from this “temporary state of uncertainty”, this waiting time where everything is in the air between scans and growth and treatment options.

At least there’s that word “temporary”. Implying that things can always get better, no matter how unlikely, as they have before. In the most perfect, replayed, manifested, thought about, prayed for, miracle of a story imaginable… my scans today would show that I am indeed a late responder, the tumors in my lungs are shrinking and therefore the ones in my brain may be too. They start me on another follow up round of Yervoy or maybe finish up with another something at the NIH. And things continue to shrink and disappear indefinitely. Oh how I wish that… not just for me, but for Brenda, my family and friends, doctors, nurses, and any people who have supported, encouraged, and helped me through these times. I want to make you proud.

Thanks for reading.

Staying focused and optimistic,
-Kevin

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aldakota22's picture
Replies 7
Last reply 2/18/2012 - 4:29pm

  I am diagnosed with stage 4 melanoma. since last feb. Have been on Zelboraf since sept.12, 2011. Drug is working remarkably. no noticeable tumors on neck.Have had side effects but can live with them.Have a weight loss from 212 down to 196 and steady. Body was firm at start but is now a little flabby.Would love to weight lift to firm up stomach and legs especially.has anyone done this before.Any down side if done with caution and moderation. Would like your input from those who have been thru this.Thanks

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Replies by: Anonymous, boot2aboot, LynnLuc, MeNDave, deardad

The oncologist told us today that my husband's latest PET/CT disclosed a couple of new mets and some growth in pre-exisiting mets.  This means that the drugs are no longer working for him and we are on to plan B, which we need to decide upon very soon.  The two options the doctor presented were:

 

1. enrollment in a phase two clinical trial by MERCK on PD-1 or:

2. treatment with Yervoy and the Roche BRAF inhibitor as a combination therapy.

 

The doctor said if it were him, he would do the trial.

 

Does anyone have any informtion on the PD-1 trials?

 

Thanks

Deborah

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  Just wanted to pay my respects in the one forum where we can really share the pain.From all I have read and heard about Gary was that he was a very warm and honest man besides being one hell of a ball player.RIP   Gary Carter .

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This post has been in the works for five years. It is with my tenacity and help from researchers around the world I am able to present this paper. It is still in draft form but I thought was important enough to just get it out there. It may be to technical for the average person/patient but, it is well worth downloading and presenting to your oncologist and or medical team.

The gist of the paper is we have responders and non-responders to therapy. WHY?? with the help of Four on the most influential researchers in the Melanoma field, Dr. Craig Slingluff, Dr. Thomas Gajewski, Dr.Kingston Mills, Dr. Jim Allison and others, I was able to put some puzzle pieces together to tell a story. A story that may just save your life

In short, the non-responders may be/are missing the "Danger Signals" inflammatory Cytokines. Why, because their tumors are most likely harboring M2 phenotype macrophages (TAMs) Tumor assisted Macrophages.

But these TAMs have plasticity. This means they can change phenotype based on their miroenviroment. With some coaxing they can be change into M1 macrophages which in turn actiavate the T-cells. This means the patient needs to have therapies that promote M1 and Th1 cells. Well both Dr. Allison and Dr. Mills have discovered ways to do just that.

Please take some time to download and read this historic paper. It just may be the game changer for cancer.

 https://www.box.net/s/mzxb1b2o0tue44a3z3xo

 

I am going end with one slide.

 

 

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~
Take Care,
Jimmy B

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