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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bikerwifee's picture
Replies 9
Last reply 5/22/2013 - 8:08am
Replies by: Lori C, kylez, deardad, Fen, BrianP, Anonymous, Sherron, Phil S

I come to this page daily looking to see how everyone is. Looking for new treatment ideas and to find comfort and friends. I havent been able to do that or find many friends so Im signing off. I pray for the few I have gotten to know and pray for miracles in your lives. May God bless you.

To those that has been concerned Lynn has umdergone five gamma knife surgeries for 32 mets which are dead and dying. He has 7 new omes which means no clinical trial for us. He has umdergone, yervoy, zelobraf, abaraxene, and know temador which we all know to be pretty use. Hes very weak sleeps alot and im pretty sure when we go tomo they will put him on hospice. He says hes not given in and wamts to live but thetes just no treatments.

Belva loving wife to my warrior Lynn

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awillett1991's picture
Replies 7
Last reply 5/23/2013 - 8:21pm

Was wondering about you this morning. I hope all is well.

Amy

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Hello all, we had our every three week check and infusion today on the Merk-3475 Anti-Pd-1 trial ( 5th infusion) , scan results that we took three weeks ago were revealed.  All tumors in the body have shrunk, and the small brain met that was stable prior to treatment is still stable.  Left upper lobe lung: was 14x12mm, now 12x10mm, Anterior mediastinal was 44x26mm now 28mmx24mm.  Right upper lobe lung was 38x26mm now 32mmx22mm.  Liver segment II was 21mmx18mm now 20mmx14mm.  And ventral Peritoneal was 20mmx17mm now 18mmx14mm.  We are extatic!  He has regained all his weight lost from his bowel obstruction, and we have gone on bike rides again...He's awake more often that i am!!! haha!  Hoping it continues for a long time!

On a side note Dr. Ribas noted that they are opening a new arm of the trial with 200 more patients.  Will be randomized between 2mg and 10mg and every 2 weeks or every 3 weeks...at UCLA. 

-Amanda-
Girlfriend of Randy, stage 4 no primary.

"Give thanks in all circumstances"

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Hstevens0072's picture
Replies 3
Last reply 5/21/2013 - 7:46am
Replies by: Hstevens0072, Janner, kylez

....what is the status of the chat room? I've tried to get in a few times recently but just get a blank screen. I thought there was a temporary fix??

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Anonymous's picture
Replies 1
Last reply 6/13/2013 - 7:57am
Replies by: gostan

Hi,

I am new to this forum & I am so lucky I found you. Everyone is so helpful & informative.

I am participating on a MERCK PD1 trial. I have been a completer responder for over 6+ months. I just had my routine MRI Brain & CT scans. My scans showed NO tumors in my body BUT my brain MRI showed a 7MM brain met of the posterior left frontal subcortical.

My doctor is waiting for Merck to decide if I am going to be kicked off the trial. I am not sure if other sponsors (e.g. BMS) let you radiate a brain lesion and then go back on the trial.

I would sincerely appreciate any input about your experience with being on a trial and then getting a brain met. Were you able to stay on the clinical trial?? Did you radiate your brain lesion and the continue with the clinical trial? Who was the sponsor of your clinical trial?

I realize that every clinical trials have different protocols but is there are general rule when it comes to getting a brain met while participating in a clincal trial??

Thank you so much for taking the time to read my post and responding.

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The Melanoma Research Foundation continuously looks for innovative ways to raise awareness of melanoma and push for further research into new treatments.  One of the ways we do this is by speaking with media outlets on important topics related to melanoma education, research and advocacy. 

To help us spread these important messages, we are looking for volunteers willing to share their melanoma experiences with the media.  Depending on the opportunity, this may range from a personal story to a treatment plan.  If you are interested in helping the MRF raise melanoma awareness by speaking with the media about your personal experience, please take a few minutes to complete a short survey by visiting: http://www.surveymonkey.com/s/6JY5R8C.

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at lsmith@melanoma.orgor 202-347-9675. 

With many thanks,

The MRF Team 

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Janner's picture
Replies 2
Last reply 8/17/2013 - 11:45am
Replies by: Anonymous, Kim K

NED.

Lungs, back, brain all look good after one round of IL-2.  Still recovering from the stroke and radiation and still experiencing some pain, nausea and fatigue, but at the moment Dian appears to be a complete responder to IL-2.  I'm wishing she dances with NED forever and has a quick recovery from all the rest.

 

yessmiley

http://www.MelanomaResources.info

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Ranisa's picture
Replies 2
Last reply 5/22/2013 - 3:28pm
Replies by: Ranisa, BrianP

A friend just called and has been diagnosised with Melanoma.  I am only familiar with docs in the midwest.  Can anyone recommend a dermatlogist and oncologist in the Portland OR area that is a Melanoma specialist?  Thanks!

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Melanoma Treatment Harnesses Immune System to Combat Cancer Cells

 

By ANDREW POLLACK
Published: May 15, 2013

Cancer researchers are growing increasingly enthusiastic about harnessing the body’s own immune system to fight tumors. And new research shows that two drugs that use this approach may be even better than one.

Researchers reported on Wednesday that a combination of two drugs from Bristol-Myers Squibb shrank tumors significantly in about 41 percent of patients with advanced melanoma in a small study. In few of the 52 patients in the study, tumors disappeared completely, at least as could be determined by imaging.

“I think it was really the rapidity and the magnitude of the responses that was impressive to us,” Dr. Jedd D. Wolchok of the Memorial Sloan-Kettering Cancer Center, said in a telephone news conference organized by the American Society of Clinical Oncology.

Dr. Wolchok’s study, and others on the immune system drugs, will be perhaps the most closely watched items at the society’s annual meeting, which begins on May 31 in Chicago.

The drugs are also generating huge interest on Wall Street, which projects billions of dollars in annual sales. While Bristol is generally considered to have a lead, Merck and Roche are not far behind with similar drugs.

Data released Wednesday from an early-stage study of Roche’s drug, which is known as MPDL3280A, showed significant tumor shrinkage in 21 percent of 140 patients who had a variety of cancers including lung, melanoma and kidney cancer.

The studies are small and they did not compare the drugs with a placebo or with another treatment, and it is unclear if they will lengthen lives. Moreover, it is unclear how long the effects will last, though there are signs that for many patients, it could be a year or more.

Cancer cells often successfully hide from the body’s immune system by preventing T-cells from attacking them. The new drugs basically work by disabling brakes on the immune system, allowing the T-cells to attack the tumors.

One of the drugs in Bristol-Myers’ combination is Yervoy, which was approved as a treatment for melanoma in 2011. Yervoy disables an immune system brake called CTLA-4. It shrinks tumors in only about 10 percent of patients, but the effects can last for a long time.

The other drug in its combination is nivolumab, which is not yet on the market. It disables a brake known as PD-1, which sits on the surface of T-cells. Tumors can produce a protein called PD-L1, which binds to PD-1 and makes the T-cells inactive.

Nivolumab, and the drug being developed by Merck, called MK-3475, are antibodies that bind to PD-1, while Roche’s drug binds to PD-L1. It is not clear yet which approach is better.

It may be possible to test tumors for the presence of PD-L1, and use the drugs mainly for those patients, where it is expected to work more effectively.

It is also not clear yet how many types of tumors the drugs will work for. All the companies are targeting melanoma, a deadly skin cancer, because there is evidence that it is sometimes controlled spontaneously by the immune system. The companies also have data for lung and kidney cancer. Roche’s study showed some effect in colorectal and head and neck cancer as well.

Bristol-Myers’s stock rose 5 percent on Wednesday, even though the results of the study were not released until 6 p.m., after the close of regular trading.

Mark Schoenebaum, the pharmaceutical analyst at ISI Group, said investors were hoping the combination of the two Bristol drugs would significantly shrink tumors in at least 50 percent of patients.

He said in a note on Wednesday that the overall shrinkage rate was perhaps a bit below expectations but added that for many patients, the shrinkage was more than 80 percent.

“The point is that the depth of those responses is pretty incredible,” he wrote.

Some experts say that tumor shrinkage, a measure that evaluates conventional chemotherapy drugs that poison cancer cells, may understate the effect of these new drugs.

“Sometimes it takes awhile for the immune system to be revved up,” said Dr. Gary Gilliland, who leads cancer drug development at Merck.

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/21/2013 - 11:04pm

I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8x8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week. What are my options? Should I wait to get in study or start IPPI right away? Is it possible to do targeted radiation and then immunotherapy ? Can they do surgery on that many lung nodules? I already had one lung nodule removed by surgery before January . I am desperate for advice!!!

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casagrayson's picture
Replies 3
Last reply 5/21/2013 - 5:23am
Replies by: aldakota22, POW, BrianP

I am rather new here, and don't know many people well.  I do, however, follow PeterO's blog @ theogler.blogspot.com.   Sadly, today's post shared news of Peter's passing early this morning.  

 

 

Saturday, May 18, 2013


The life that is truly life
 
We write with grateful but heavy hearts to share the news of Peter's passing this morning, May 18th, at 7:30 a.m. The loss we feel is profound, and yet we rejoice in faith that he is even now entering into the light of God's presence. He went in peace, surrounded by our prayers.
 
For those of you who are in the area and would like to come, a memorial service in honor of Peter's life will be held next Friday, May 24 at 2:30pm at Calvin Presbyterian Church in Corvallis. The reception following the service will be held at our home.
 
These past few weeks have been intense and sad, as we've cared for Peter in his steady decline. For those of you who are counting, Peter's death comes just a few days short of the 2-4 month prognosis his doctors gave us in March. If Peter were here to write this post, he'd certainly have plenty of conjectures about how and why his cancer went the way it did towards the end and what it all means medically. The truth is that we will never know - we simply rest in thanksgiving for Christ's presence with us, the Great Physician who knows the inner workings of our bodies and ordains the days of our life, and the moment of our death. Cancer did not have the final word in Peter's story. His journey has only begun now that he has passed into the "life that is truly life" (1 Tim. 6:19), where we trust he will live with God forever in his resurrected body.
 
We want to thank you all for your prayers, kind thoughts, phone calls, blog comments, messages, and words of encouragement during this time - our whole family has felt your care so deeply and truly sense our unity in Christ's love. We're especially thankful for the season of Pentecost that is now upon us, and trust that the Holy Spirit will come to our hearts to illuminate and console, as Jesus promised. We do not mourn as those who have no hope.
 
 

Strength and Courage,

Susan

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Strength and Courage,

Susan

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Gene_S's picture
Replies 1
Last reply 5/19/2013 - 1:57am
Replies by: Anonymous
Join Us!  The NaturalNews Healing Summit will be available
(online) at no cost - starting Mon. May. 20th - details below:

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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bikerwifee's picture
Replies 7
Last reply 5/21/2013 - 9:50pm

Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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