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.

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Found this article poking around the ASCO blog link that Brian had posted:

One interesting point (among many).  A few weeks back I had posted that I've not had a PET scan since my Stage IV diagnosis.  This could be why:


The first step in evaluating patients with known or suspected metastatic melanoma (stage IV) is to define the extent and sites of disease. A CT scan of the chest, abdomen, and pelvis is a good starting point. Some patients and physicians may be concerned about radiation exposure, in which case an abdominopelvic MRI can be substituted for the abdominopelvic CT. Although this adds expense, it decreases the overall radiation exposure from approximately 17 mSv to approximately 7 mSv. Given the risk and therapeutic significance of central nervous system metastases, it is also appropriate to obtain imaging of the brain with either MRI (preferred) or CT. Some oncologists rely on 18F-fluorodeoxyglucose (FDG) PET-CT scans to define the extent of disease and there are some studies to support this,8,9 especially in patients who are being evaluated for possible resection of oligometastatic disease.1018F-FDG PET-CT scans offer full body imaging with slightly decreased radiation exposure compared with CT scans of the chest/abdomen/pelvis. Clinicians should be aware, however, of certain drawbacks of 18F-FDG PET-CT scans. First, there is a substantial rate of false-negative in the lung,11 leading some clinicians to include a noncontrast lung CT scan with the PET scan. This results in total radiation exposures similar to that for a full body CT scan. Second, tumor dimension measurements generally cannot be made reliably from a PET scan, leading to the need to eventually perform a full body CT scan to monitor response to therapy, although newer PET-CT scanners can offer high-resolution CT images. Third, 18F-FDG PET-CT scan results do not correlate reliably with clinical effects in patients being treated with BRAF inhibitors;12 melanoma FDG uptake will nearly always decrease with BRAF inhibitor treatment whether or not there is substantial tumor shrinkage. Hence, PET scans should not be relied on to follow clinical response in these patients.





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Anonymous's picture
Replies 2
Last reply 6/3/2014 - 5:50pm
Replies by: Anonymous

My dad started first round of Yervoy 2 weeks ago.  Most recently he has been experiencing continual double vision.  He's getting little to no info as Medina Cleveland Clinic has liimited experience with the drug.  Onc is sending him to Optho tomorrow.  Reading the drug main page indicates that double vision is a side effect but is there any treatment to off set this side effect?  Does it eventually subside? 

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If anyone is in Indianapolis Indiana I will be walking at dusk to raise money for awareness and a cure..June 14 7 pm at Fort Harrison State Park

Remember what's important and make everyday count

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Anonymous's picture
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Take that, cancer: Immune booster drug getting kudos

By Joseph Mayton, Tech Times | June 3, 4:19 PM


Cancer is about to get a new foe, and it's not that different from what we already have in our bodies. A new study announced at the American Society of Clinical Oncology meeting in Chicago says that the melanoma drug Yervoy reveals that it can improve treatment for those with advanced and earlier stages of the illness.

The drug aims to allow the immune system to rebound and attack, and has been shown to help in advanced stage 4 melanoma.

In what is being viewed as significant, the drug reportedly reduced the risk of melanoma recurrence by one-quarter. The median time until the diseased return after surgery to remove cancer tumors was around two years and two months, compared with less than a year and a half for those on a placebo.

This could be a major development in how cancers are fought, especially melanoma. And researchers believe they may have begun to unlock many clues to future cancer treatments.

Also at the conference, scientists have reported that the modification of white blood cells, or T-cells, can destroy and make cancer cells disappear. The study by scientists from the National Cancer Institute is a huge finding that could dramatically change how medical professionals battle cancer.

Despite the optimism around the findings, the genetically modified T-cells only make cancer cells disappear for a limited period before they return. The concept that many scientists had believed, that cells can work to help battle non-blood cancer and tumors, has been principally answered. Now, more testing and research is needed to continue the effort to find a way to kill and end cancer.

The study was conducted with women who had cervical cancer, which is caused by a virus, the human papilloma virus, or HPV, which a woman's body trains its white blood cells to recognize. The study tested whether those same trained blood cells, if genetically modified, could work against solid tumors found in cervical cancer.

In three of those women who were given treatment, their tumors shrank noticeably, while two other women saw that the cancer that had spread to other areas disappeared entirely, but scientists warned that it is too early to tell whether the women were cured.

If true, it could be a major coup for medicine, where cancer continues to be one of the leading causes of death across the planet.

"This proof-of-principal study shows that adoptive transfer of HPV-targeted T cells can cause complete remission of metastatic cervical cancer and that this remission can be long-lasting," said lead study author Christian Hinrichs in a prepared statement at the conference.

"One implication of the study is that cellular therapy might have application to a broader range of tumor types than previously recognized. This treatment is still considered experimental and is associated with significant side effects. We also need to explore why this therapy worked so well in certain women, and not in others."

Overall, the initial reaction to the study has doctors and researchers extremely excited, with many praising the efforts of the NCI in continuing to look at new methods and efforts to battle against cancer. While they are hopeful that the potential discovery of a "cure" of some kind is positive, they remain cautious before further testing and study can be done.

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degood's picture
Replies 17
Last reply 6/4/2014 - 9:27am
Replies by: Anonymous, Ginger8888, degood, Tamils, BrianP, kylez, tcell

My husband had a 4mm melanoma removed from his back in Nov. 12 using the wide excision. They tried to use dye for the lymph nodes and it would not move so they done a whole body pet scan, with nothing showing up. He has went every 90 days to the surgeons office for exam and everything has been OK, last trip in Feb. said he is doing well and extended time to 6 mos. His liver enzyme test was high so they took him oiff of cholesterol meds and told him to quit naproxen as that would affect results. Last test it had gone down slightly. Lung x-rays have always bee clear, no swollen lymph glands etc.  Starting in Feb. his vision started having flashing lights etc. I have also posted on the ocular board. He has gone to a very good eye specialist who termed it as a suspicous choridial nexus and wants to watch he goes back in June. In the meantime he has had several new spots show up on his  back, chest, and inside his lip. We were sent to a different dermatologist as the one at our local VA felt he should be seen by a specialist. We went yesterday and boy he scared me to death!! He say the melanoma from his back has spread including his eye and kept making statements like no use to put him through eye treatment as it was the skin cancer. The eye specitalist whom is one of the best in the state said if it is melanoma in his eye it is not associated with the skin even though it is called melanoma, as it  looks totally different to him than the skin cancer type. This guy yesterday started in on brain scans, lung scans, chemo etc. He would only due biopsies on 3 of the 9 spots as he is positive they are all the same even though they do not look alike or even resemble the one taken off his back. and again no point in putting him through further biopsies.  He was hard to understand due to his accent and was very abrupt he also an associate professor at the local college and has a know it all attitude.

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Anonymous's picture
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Last reply 6/4/2014 - 1:20pm
Gene_S's picture
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Last reply 6/4/2014 - 11:44pm
Replies by: Gene_S

The web site is    You need to open a free receive emails



 Best wishes,


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

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Anonymous's picture
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Last reply 6/5/2014 - 8:15am
Replies by: hbecker, G-Samsa

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

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ilikepralinen's picture
Replies 6
Last reply 6/5/2014 - 2:13pm


I am 27 Year old Indian living in Germany. End of Feb 14, I had consulted a Neurologist (due to Headaches). Neurologist happened to see a 1.7 cm lesion in Brain MRI. I was referred to Neurosurgeon, who did a Stereotatic Brain Biopsy (in Mid of March). Biopsy results : Metastatic Melanoma. As of now I am undergoing Radiation Therapy called Brachytherapy.

Last week I also met the Dermatologist. Body examination did not reveal any Melanoma. CT scan of Thorax, Abdomen and Neck has not found any other Metastase. Dermatologist thinks its Melonama in Brain. (According to her, its quite rare.) As i have only headache, Doctor wants me to wait till end of May. (End of May she wants to do : PET - CT scan, MRI for spinal Cord and other Blood tests).

a. Does anyone have information about this type of Melanoma?

b. What do you guys suggest?

1. Should i wait till end of May?
2. Should i consult another Dermatologist?
3. Or was the Biopsy result wrong in the first place?

(My Neurosurgeon and Dermatologist are one among the best doctors in Germany)

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flvermonter's picture
Replies 2
Last reply 6/6/2014 - 3:50pm

Hello, I need to update the profile once i find it again, but would like some help in next direction.  My husband had BOTH lung cancer (right lung) and melanoma on the right side.  He had all the lymph nodes removed and was advised it had passed beyond; however, no other site found in May 2012.  His petscans were good through Jan 2014.  By the way had open heart surgery for aortic valve replacement Dec 2012.

He balance became quite off and worsened over time.  Petscan was good, MD checked and ok, ifnally went to a Nerology Dr who ordered and MRI this was end of March 2014.  3 metastic tumors showed on the brain.  This was followed by WBRT that completed 3 weeks ago.  His balance was somewhat better for awhile, but is slowly worsening.  Additionally, his righ hip or top of his right light has sharp pain when he stands.  He has also been on prednisone since 3/22/14 for the swelling on the brain.

He had a petscan last week, it showed no other tumors in his body, albeit, a suspicious spot on his top of right femur.  That is getting a catscan today.  The petscan showed the 3 tumors that the March 2014 showed.  The Radiation Onc said it may be just the swelling from the radiation and that may be unusual for radiation not to kill the turmors.  He added that melanoma is unpredicable.  So we are waiting to see if his balance improves and checking the leg. 


Here is the MRI info from 3/20/14:

asymmetric areas of vasogenic edema involving the right posterior parietal lobe and left frontal lobe as well as the cerebellum on the right side.  A discrete 18-mm mass in the right posterior parietal region and a larger 2-cm mass within the cerebellum on the right side.  A distinct lesion within the left frontal lobe is not appreciated; however, given the asymmetric white mater changes, it is highly suspected that a third lesion in this location is present.

Here is the PETscan from 5/30/14:

Hypermetabolic 29mm right cerebellar metastasis with SUV of 8.5.  There is circumjacent vasogenic edema with mass effect and effacemetn of djacent margin of fourth ventride.  No hydorcephalus.  A second 20 mm intensely hypermetablock metastasis with SUV of 11.2 in superior right parietal lobe involving precuneus.  Circumjacent basogenic edema with compression of overlying parietal cortical suici.


He has not seen a medical onc, only the radiation onc.   I think we need an MRI to compare apples to apples for sure, but can melanoma be treated with radiation and NOT be killed?

Hugs to all, patients and care givers.

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odonoghue80's picture
Replies 12
Last reply 6/6/2014 - 4:44pm

Hi there,

Has anybody have any surgeries while on Anti-PD1 clinical trials? I have been on Anti1-PD1 / Anti-KIR clinical trial for just over two months. I had a mixed response from my first scans. First of, I'm feeling much better which is great, and some of the tumors shrunk, or even resolved. So I'm happy about that, however, there were others that grew and some new tumors appeared. Now both me, and my oncologist are unsure what will happen in the short term. So I want to be ready to know what the next treatment option is.

Since I have numerous accessible tumors, I want to have a tumor or two, taken out at MD Anderson so they can try to grow the Tcells. If my TIL's grow, MD Anderson can froze those until I might need them, or if I'm qualified for the TIL therapy.

My concern now is that I don't want to just jump ship from my current Anti PD1 / Anti KIR trial. I definitely don't want to get kicked out of the trial by going to another center and having a surgery in the middle of a trial. Is there any way to find out if this is possible? Is there a way to call the pharmaceutical drug/trial directly and ask them?

My reason for removing the tumors and testing to see if MD Anderson can grow my TIL's is a type of insurance for myself. This way, if my current trial/drugs don't work, then I know ahead of time if the TIL therapy is a next option for me.

Any thoughts? Or help? If anybody else encountered similar problem?



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DUSTILANE's picture
Replies 1
Last reply 6/6/2014 - 6:26pm
Replies by: joelcairo

Has anyone ever heard of melanoma causing dementia?


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brittanyx's picture
Replies 6
Last reply 6/6/2014 - 7:55pm
Replies by: michaelinsocal, ed williams, Ginger8888, Becky, Anonymous

I'll be doing the interferon treatment for a year and was curious if anyone here has done it or doing it and how it was/is for them and the side effects?

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