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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rrrule32's picture
Replies 10
Last reply 11/2/2012 - 12:03pm

Hello All,

My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

Has anyone tried the combo of Temodar + Ipilimumab?  I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up.  When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.

Any advice would be greatly appreciated.

Thank you,

Travis

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Jocks wife's picture
Replies 1
Last reply 11/3/2012 - 1:45am
Replies by: DeniseK

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

Login or register to post replies.

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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awillett1991's picture
Replies 5
Last reply 11/2/2012 - 10:02am

Just finished 2nd dose of Ipi and diagnosed today with 2 brain mets - 4 mm and 6 mm. Bummer since only been off Zel 4 wks and was told brain was all clear. Anyone have experience with doing radiation in between Ipi treatments? I think there were some trials based on some effects they had seen at Sloan where radiation seemed to have turbo charged Yervoy and it then attacked the melanoma all over the body like crazy. Looking at SRS to zap these 2 critters as soon as possible.

Thanks.

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rrrule32's picture
Replies 4
Last reply 10/31/2012 - 9:03am
Replies by: rrrule32, Theresa123, deardad, Anonymous

When the Melanoma tumors create a resistance to Zelboraf, do they become more aggressive than they were before taking Zelboraf?  Do the tumors grow faster once the Zelboraf stops working?

Thank you for your input,

Travis

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Colleen66's picture
Replies 13
Last reply 11/3/2012 - 5:22pm

Hi all.  Basically, I had a growth that started last winter.  In June I wanted it removed for cosmetic purposes.  Turned out it was melanoma.   I've had the wide excision surgery and sentinel node removal.  The cancer in my leg is now clear but the node had cancer.  It is stage 3a.  Now comes the choices of treatment.  

1.  Do nothing.

2. Do the lymph node removal in the left groin.

3. Do the interferon treatment. 

4. Combination of 2 and 3.

5. Go into a trial. 20% chance for the surgery, 80% chance in the no surgery group.  The no surgery group gets ultrasounds.  Both groups may choose the interferon treatment if they choose.  

I am uncomfortable knowing that the cancer is still in me.  My family all have their own opinions but I am really scared and having difficulty weighing the risks vs. Reward.

I am 47 of Irish ancestry.  Fair skin, freckles, blue eyes.  The Doc told me I am now high risk for recurrence.  My oncologist is also the head of this trial.  She is of the opinion that I should do the trial, bias?  I don't know.  My immune system is already compromised as I have hypothyroidism,  celiac disease and sjogrens.  I am also bi-polar, severe depression, anxiety disorder and a few more acronyms.   My psych issues have been stable except for the anxiety, for obvious reasons.  

Do you guys have any insight for me? Anything at all will be helpful.

Colleen 

Live!

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Laurie from maine's picture
Replies 7
Last reply 10/29/2012 - 9:11am

I have a question for people who have had radiation vs craniotomys and how they did

I am having a cranitomy tomorrow.  I had a tumor SRS in june and unfortunately the area has kept slowly swelling to the point that we need to take that out.

Meanwhile they found another 1cm met on the other side.  I was told that the surgeon would rather I try radiating second  tumor because that one is by my temple and trickier.  I am just wondering if people would suggest to just do a craniotomy on the second one (once i have recovered from first) or do SRS again and hope that I dont have to deal with time frame of swelling again

 

The reason I ask is I have been off any treatment since april when I finished Ippi. I feel my time is runing out to hope the ippi is keeping my tumors under control that long.  I have bad pain in side and tumrs in lung, liver, adrenal and in arms and legs all being kept fairly stable for now but you can understand why i want to get brain hopefully clear so we can start a new treatment.

I did BRAF but it only worked for 3 months with me.  My doctor is hopeful that we can clear brain asap and get me into pd-1 trial.

 

so question is would you do craniotomy on second (risking possibility of right hand being effected by surgery) or do radiation and hope that it worked on this tumor?

 

I realize that a lot depends on how well i recover from tomorrows surgery, but they say it should be easy

 

thank you for your help - you are all in my prayers

laurie from maine

 

 

 

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Caretaker's picture
Replies 18
Last reply 11/1/2012 - 4:58pm

Hi,

Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.

At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.

A couple of weeks ago his energy level began dropping slowly. Within the past week, he began behaving/thinking/not remembering as one who has Alzheimer's. His oncologist put him in the hospital Friday (when she came back from her vacation). His heart meds need recalibrating as his bp and pulse were too low, and another brain mri was taken. Today we found out he has "multiple new lesions" on the brain. We don't know how many, and this oncologist doesn't do hospital visits. (I know. I wish we'd known that when we started but we're pretty new in town.) He's losing weight again (app. 45 pounds total so far), no energy, and gets emotionally upset easily and constantly.

I'd like to know if any of you have had Z work for 3 months and then quit?

If this was you, would you try a different chemo? Would you try an alternative and, if so, which - Gerson's, baking soda and maple syrup, high dose Vitamin C, other??

And also, if this happened to you and Z kicked back in, please let me know that, too!

Thank you for reading, all, and please keep sharing your wonderful stories!

Peace,

Caretaker

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Lauras News's picture
Replies 11
Last reply 10/29/2012 - 5:17am
Replies by: Anonymous, Janner, Lauras News

I have two doctors with differing referals for my next procedure. The md who performed the removal referred me to dermatology surgeon. She specializes metobolic balancing/anti aging/hormone balancing/vitamin deficency. My family practice md of 20 years strongly suggests oncology surgeon. Both doctors recommend Seattle Cancer Care Alliance after final dignostic procedures.

I can have wide excision w dermotogist Nov 1. I have not seen this dr previously. I should hear from the Oncologist in the next couple days. From some reading on this site, it sounds like i may need to have first lymph noid tested before wide local excision. Does a dermatologist do this procedure? I also have other moles/sites that need to be looked at/tested that have not been looked at by a dr.  Will an oncologist do this?

Any anwers/advice/suggestions. Feeling overwhelmed with decision and some pressure to hurry to have the rest of the bad cells removed.

Lab report:

Malignant melanoma in situ with  associated atypical compound nevus. 

Immunohistochemistry reveals a maturation pattern and low  proliferation rate compatible with a melanocytic nevus in the dermal compound of the lesion. The lesion extends to the peripheral margins of the specimen. Complete removal is recommended. 

Received specimen is 1.4 x 0.8 x 0.3 cm portion of skin. 

Sections show skin with a poorly-circumscribed and asymmetrical proliferation of cytologically atypical melanocytes in the epidermis and in the dermis. Inreaepidermal atypical melanocytes are present in superficial epidermal layers in several area. The dermal componant of the lesion appears biphenotypic having either a small nevoid or larger epithelioid cell appearance. The lesion extends to the peripheral margins of the specimen.

HMB-45 strongly labels junctional melanocytes highlighting the cells present in superficial epidermal layers. Labeling decresaes with progressive decent in the dermal component. MIB-1 Labels the nuclei of some keratinocytes, but very few of the melanocytes in the dermal component of lesion are labeled. This represents a maturation pattern and low proliferation rate compatible with a nevus in the dermal compoent of the lesion.

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alabama girl's picture
Replies 5
Last reply 10/26/2012 - 8:56pm

I went for my CT scan yesterday and they found nothing. I was diagnosed last year with stage IIIB. It was 9mm deep and micromets in 2 lymph nodes which i had only radiation on the nodes and did not remove all. Anyway, I am thrilled to make it to the 1 year mark. Melanoma is such a scary thing to do with. Now if in March of next year, I can say i am 1 yr NED with the breast cancer also, that would be great!!

I read all of the posts and my heart goes out to all of those who are not getting good reports and dealing with this monster. You are all in my thoughts and prayers!

Keep fighting and hanging in there, all your warriors!!

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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Now if we could just get this growth AFTER lymphatic system surgery could it reduce edema?

 

http://www.the-scientist.com/?articles.view/articleNo/32415/title/Lympha...

EDITOR'S CHOICE IN DEVELOPMENTAL BIOLOGY

The paper

Y.R. Cha et al., “Chemokine signaling directs trunk lymphatic network formation along the preexisting blood vasculature,” Dev Cell, 22:824-36, 2012.

The finding

The lymphatic system, a constellation of vessels, capillaries, and nodes throughout the body, has always been difficult to study. Brant Weinstein, of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and colleagues discovered chemokine markers that guide lymphatic vessel growth during development. It’s a “major contribution to our understanding of the development of the lymphatic vasculature,” says Marc Achen of Peter MacCallum Cancer Centre in Australia, who was not involved in the study.

The technique

Weinstein’s group used transgenic embryonic zebrafish to track the formation of fluorescently labeled lymphatic vessels. The researchers mounted fish embryos in methyl cellulose, submerged them in flowing water, and imaged them with time-lapse confocal or two-photon microscopy.

The vessel tracks

The group looked at gene expression patterns for factors that might act as guidance cues. They tested the tissues surrounding the developing lymphatic network as the vessels migrated to new locations or sprouted new branches. One set of chemokine genes was expressed just before vessels arrived, then turned off. When the group knocked down the genes for those chemokines and their receptors, “we got lymphatic formation defects,” said Weinstein, whereas overexpression caused lymph vessels to form where none normally would.

The application

Researchers recently discovered that tumors stimulate the growth of new lymphatic vessels, which could be a major highway for the metastatic spread of cancer cells. As a result, there’s a great deal of interest in what signals lymph vessels to form, and these chemokines may be part of it, says Weinstein.

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

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JerryfromFauq's picture
Replies 2
Last reply 10/26/2012 - 10:22pm
Replies by: POW, JerryfromFauq

http://www.caring.com/blogs/fyi-daily/medicare-rehab-rules-change?utm_me...

By Paula Spencer Scott, Caring.com senior editor
Last updated: October 23, 2012

Has your loved one with Alzheimer's disease, Parkinson's, chronic lung disease, or certain other chronic conditions and disabilities lost out on Medicare coverage of therapy services because likelihood of medical or functional improvement couldn't be shown? A proposed major rules change should make qualifying for help much easier.

What has happened:

Following a national class action lawsuit, the government has agreed to a settlement plan that would allow Medicare patients to continue receiving such rehabilitative services as physical therapy, occupational therapy, and some skilled care either at home or in a nursing home.

As Gill Deford, the lead lawyer with the Center for Medicare Advocacy, explained to The Washington Post:

“If you have a chronic condition, by definition you are not improving. Our view is that Medicare regulations were intended to allow people to maintain their health status. They don’t have to show they are getting any better. The point is to allow them not to get any worse, if possible.”

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

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Replies by: JerryfromFauq

http://www.multivu.com/mnr/57608-bayer-regorafeni
Bayer’s Stivarga® (regorafenib) Tablets Approved by U.S. FDA for Treatment of Metastatic Colorectal Cancer

Wayne, NJ, and South San Francisco, CA, September 27, 2012 /PRNewswire/ — Bayer HealthCare and Onyx Pharmaceuticals, Inc. (NASDAQ: ONXX) announced today that the U.S. Food and Drug Administration (FDA) approved Bayer’s Stivarga® (regorafenib) tablets for the treatment of patients with metastatic colorectal cancer (mCRC) who have been previously treated with currently available therapies (including fluoropyrimidine–, oxaliplatin– and irinotecan–based chemotherapy, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy).1 The approval of Stivarga is based on results from the pivotal Phase III study (CORRECT) that demonstrated improvement in overall survival (OS) and progression-free survival (PFS) compared to placebo in patients with mCRC whose disease had progressed after approved standard therapies.2, 3

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

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