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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democat's picture
Replies 4
Last reply 5/29/2014 - 1:44pm

I was initially diagnosed in December 2012, had sentinel node biopsy in January 2013, and lymph node dissection in February 2013.  My melanoma oncologist said I was officially Stage 3a, but more like a Stage 3b, because of the depth and thinkness of my primary and the high rate of mitosis. So he says I'm 3a/3b.

I've had 3 CT scans in the last year and a brain MRI - all clear.  Friday is my 4th CT scan, and I'm nervous to the point of distraction. I feel like I can't make any plans for vacations, or much of anything, until I get those results.

There is so much conflicting information about survival rates and disease free survival rates on the Internet - much of it out of date.  I'm sure I read something at some point about the 2-year NED anniversary as being a point where odds against recurrence improve, but can't find anything to that effect right now.

Leading up to my scans, I always do some research on the latest treatments for metastatic melanoma, to convince myself that stage 4 isn't necessarily a death sentence.  I also draw comfort from reading the posts of many on this site who have withstood various treatments and are still around.

I know I'm rambling, but I just wanted to reach out, in case anyone has any words of wisdom on how to survive the run up to the scan, and the even worse wait for results.

 

Thanks!

 

Roxanne

 

 

 

 

Roxanne

Stage IIIa/IIIb

since 1/2013

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Ginger8888's picture
Replies 11
Last reply 5/29/2014 - 4:45pm

Hello i'm Ginger.. Was stage 3 C i guess until today after my Dr. appt...I had a biospy done last week on a lymph node on my neck..I had a dissection back in feb..Well the node tested positive and i'm worried sick..I have adopted my 14 old grandson and a single grandma..My oncologist here( in my area) has been in constant with my Melanoma Specialist since he's been seeing me..My specialist is meeting with others to figure out what to do next..I finishedthe 30 interferon about a month ago with no problems and am worried what the next step will do to me.. 

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sofistef's picture
Replies 20
Last reply 5/29/2014 - 5:16pm

Hi,

 

Yesterday received the news that I hoped I would never had to hear. I had the PET CT to further evaluate the extent of the melanoma spread. Aside from the shoulder met, I have another 3 cm liver lesion and some other small ones.All of these showed up in a matter of weeks !! The index tumor is smaller and has faint metabolic uptake for all it matters. They unblinded me and I took both Ippi and Nivo so I received the most efficient treatment, too bad it only worked for a such short period of time. The brain MRI came back clear thank God! My blood work is still normal dispite all of these including LDH. Right now I'm trying to cope with all these terible news and look for another treatment. I need to reevaluate the adrenal function hopefully I'm no longer adrenal insufficient. Did someone had such a bad experience with the combo? It is so painful not to have a back up plan! I'm Braf negative unfortunatelly! I really appreciate any advice!

Dana

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/29/2014 - 5:27pm
Replies by: Ed Williams, Anonymous, hbecker, Socks

Hi! I was recently diagnosed stage 1b nodular melanoma.  I guess from all my research nodular is the worst kind- which makes me wonder if that means mine will recur.  A also feel like it doesn't matter the stage- that melanoma will catch up to you no matter what. It seems that all I read is stage1 progressing to stage 3/4 any time.... But some as late as 20 years later.  Are you never "safe."  This is all very overwhelming.  Thanks in advance for your advice.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/29/2014 - 11:57pm
Replies by: Swanee, Janner

Eight years ago my husband had a wide local excision which lead to lymphatic mapping and sentinel lymph node biopsy. One lymph node was removed from each armpit and found to be Melanoma free after biopsy. Since then he has had several more excisions that have only led to sometimes taking a little more around the area just to make sure. Most recently this happened about four weeks ago, and we were given the all clear.

Yesterday he felt some soarness in his underarm and later looked to find a large colorless lump under the skin. This morning he said it felt larger. I immediately got him in with his Dermatologist today who examined where they had recently removed the stitches. The Dermatologist said everything looked fine, gave him some antibiotics, mentioned the rare possibility of cat scratch fever, and scheduled him a follow up appointment in a week.

I am shocked that the possibility of it being Melanoma wasn't so much as even brought up? I wish I had gone so that I could understand why this is not a concern, which brings me here...

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laura b's picture
Replies 5
Last reply 5/30/2014 - 12:11am

My dad was diagnosed as stage IV (BRAF -) in March with several mets in his lungs. Radiation and surgery were not an option. I tried to get him in a couple of PD1 trials but was unsuccessful. He began Yervoy/ipi treatments on 4/17 and had his third of four infusions today. Before the infusion today, he had his first CT to check for progression. We had been warned that there would most likely be growth at this stage since it takes a while for Yervoy to activate. However, we received some unexpected good news! The scans showed no new growth and no new masses. It even appeared that some of the tumors were thinner, and the radiologist thought he could see the beginning signs of necrosis. We’re still cautiously optimistic, but I wanted to share his experience for all those out there who may just be starting their journey, like my dad. 

This board has helped me so much with information, options, and encouragement that I have in turn shared with my family. It all felt so dark before I found this community. Thank you to everyone. Wishing you all health, strength and positivity. God bless!

Laura 

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melanomafighter's picture
Replies 7
Last reply 5/30/2014 - 7:43am

Hello...wanted to send hope and positive outlook to all of you...50 months NED....I feel very blessed....

Remember what's important and make everyday count

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Mamasgotsomescara's picture
Replies 7
Last reply 5/30/2014 - 9:44am

Hi all. I was just diagnosed with melanoma and have surgery next week. A staging wide excision. The tumor is right on my lower shin on my leg. I am looking for anyone who has had this. What can I expect recovery wise? Dr said it's a tough spot because there is very little skin to close the wound. I have a 12 week old baby and a 3 year to care for and wondering how many days I will need child care. They are going about 5mm deep. Any info greatly appreciated!!!!! 

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sofistef's picture
Replies 6
Last reply 5/30/2014 - 6:23pm

Yesterday I got the result of the Braf re-test and I'm positive this time. I hope I can slow down this monster with the targeted therapy, hopefully my adrenals will behave in the meantime and I can do TIL! My shoulder is starting to really bother me.

Prayers ,

Dana

 

 

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Anonymous's picture
Replies 7
Last reply 5/30/2014 - 6:29pm
Replies by: jpfletchjr, Linny, mary1233, Anonymous
Obamacare lightens load for cancer patients
People with cancer can get health coverage even if they lose their jobs and insurance
May 25, 2014|By Judy Peres, Special to the Tribune
 

Fiona O'Connell is familiar with the working person's health care nightmare — the one where you get too sick to work, and then you lose your job, and then you have no insurance to pay for the treatment you need.

O'Connell lived that nightmare, and she's still bitter and angry.

But now she can talk about it in the past tense. As of Jan. 1, the cancer survivor has medical insurance under the Affordable Care Act. One of the central provisions of the law is that no one can be denied coverage or charged higher premiums because of a pre-existing condition. And there are no annual or lifetime caps on insurance coverage.

"Until this year, if you had cancer or a history of cancer, you were out of luck," said Karen Pollitz of the Kaiser Family Foundation, which researches health care and health care policy. "That's different now. It's a historic change."

It's also a change that can make the difference between life and death. According to the Barack Obama administration, Americans who are uninsured and diagnosed with cancer are 60 percent more likely to die of that cancer than those who have insurance.

But Pollitz and other experts say the federal health overhaul, as important as it is, does not solve all the problems facing such patients. A Kaiser tracking poll found that, despite government subsidies, some people still can't afford their premiums or find the out-of-pocket costs (deductibles, copays and coinsurance) too burdensome.

Such expenses are capped at $6,350 a year for an individual and $12,700 for a family, but "that's more than a lot of people can afford," Pollitz said.

In addition, because the sign-up process was new and complicated, some patients are finding that doctors they thought were covered by their new insurance plans are outside their network, which means they have to pay a higher share of the cost of their care if they choose to stay with previous providers.

While the stakes are especially high for cancer patients, their experiences also reflect the broader realities for consumers as they start to benefit from the federal health overhaul while confronting its complexities.

To O'Connell and several other cancer patients interviewed, however, any drawbacks are a small price to pay for access to good medical care.

O'Connell, 54, had worked as a property manager for a company whose benefits included employee medical insurance. But in 2007 she was diagnosed with breast cancer and proceeded to go through months of surgery, radiation and chemotherapy.

After stints on short-term disability and unpaid leave, O'Connell offered to come back part time but was turned down, she said. Eventually she lost her job, and her cancer meant she was uninsurable in the private market after her COBRA benefits ran out.

With help from a relative who works in the insurance industry, O'Connell found coverage through the state's former high-risk pool, known as ICHIP. It was expensive — $900 to $1,200 a month, she said — but she felt grateful to have it.

Now O'Connell, who lives in Burr Ridge, has a Blue Cross Blue Shield policy for which she pays $332.95 a month, including dental coverage. (That includes an income-related federal subsidy of $354.) Her annual deductible is $1,000 for network providers and $2,000 for out-of-network providers. "But most of my doctors were in the plan I chose," she said, "so I have no issues there."

Kathy Kinsella, 62, of Hinsdale, is also happy with her new coverage. Like O'Connell, Kinsella has a history of breast cancer as well as other illnesses and injuries that caused her to rack up hundreds of thousands of dollars in medical bills. Even though she had insurance through ICHIP, "I worried I was about to reach my lifetime cap," she said.

Before the Affordable Care Act, insurance companies typically cut off coverage at $1 million. According to the Obama administration, more than 60 percent of bankruptcies in the U.S. are medically related, and three-quarters of those who go bankrupt have health insurance.

Kinsella now pays $274.29 a month — after a $386 subsidy — for a gold-level policy with a $250 annual deductible and an out-of-pocket cap of $2,000 that allows her to continue receiving care both locally and at the Mayo Clinic in Rochester, Minn.

But another breast cancer survivor discovered her new policy does not cover doctors she thought were included.

Rose, a 64-year-old Chicagoan who asked that her full name not be used, was diagnosed three years ago and treated at Rush University Medical Center. When it came time to sign up for health insurance under the Affordable Care Act last fall, she chose a gold "choice" PPO option and was assured by the navigator who helped her apply that all her doctors were in the network.

"But when I registered for my annual mammogram and checkup with the breast surgeon last week, they told me it would only be covered out-of-network," Rose said, "which means I'll have to pay 40 percent of the cost and meet a higher deductible."

(Mammograms are covered under the law with no cost-sharing when used as a screening tool, but for patients with a history of cancer such tests are considered diagnostic procedures, not preventive services.)

Mary Ann Schultz, a spokeswoman for Blue Cross and Blue Shield of Illinois, said consumers should not assume all providers at a given hospital are covered just because some are. "Each doctor signs their own contract with an insurer," Schultz said. "Even doctors within the same practice may not be in the same network."

There are "many ways to check to see if a provider is in network — phone, Internet, mobile app," Schultz said.

Rose said she logged more than 20 hours on hold with the insurer's customer service number but never got through. She also submitted three email requests without receiving a reply, she said.

Her example highlights the complexity of choosing an insurance plan. Researchers at Virginia Commonwealth University reported this year that about 50 percent of consumers buying insurance on mock exchanges picked plans that did not offer adequate coverage for their health status.

Medical professionals didn't do much better. In another experiment, the researchers asked 70 residents and medical students to choose the best plan for a hypothetical patient. Two-thirds of them did OK when asked to pick among three plans, but only one-third chose the right policy when nine were offered. In real life, a typical patient shopping on HealthCare.gov — the federal website that hosts the insurance exchange for Illinois and 35 other states — may find three dozen plans from which to choose.

Advocates say consumers should look beyond monthly premiums to figure out their overall expenses, taking deductibles and other forms of cost-sharing into account. The American Cancer Society's Cancer Action Network and other advocacy groups generally recommend that cancer patients choose gold or platinum policies, which have higher premiums but lower out-of-pocket caps.

"People are going to learn," said Laura Phelan, policy director for Get Covered Illinois, the state agency charged with helping residents find insurance. "This is Year 1. Next year, when they buy their plans, they'll know what to look for."

Another complicating factor for cancer patients is the cost of prescription medications, which can vary widely by state and plan.

A study by the Leukemia and Lymphoma Society found that some plans in Florida and Texas had 50 percent coinsurance rates for specialty drugs, meaning consumers could be on the hook for half the cost of medications that sometimes run thousands of dollars per dose.

In California, the highest coinsurance rate was 30 percent, and in New York copays were typically $70 per drug for a month's supply. The study did not look at drug costs in Illinois, but the summary of benefits of Blue Cross and Blue Shield of Illinois' gold PPO plans shows that the copay for a specialty drug is $150 a month.

When the Cancer Action Network examined drug coverage in five states and the District of Columbia, it found that information on cancer drugs — especially intravenous chemotherapy agents — was not easy to come by. The researchers concluded: "We found … that cancer patients would face a difficult, and in some cases impossible, task in making apples-to-apples comparisons of health plans based on drug coverage."

Dr. William Kamanda, a hematologist and oncologist in northern Indiana, said he has had to change some patients' medications because the ones they were taking were not on their new plan's list of covered drugs — called formularies — or were assigned to a high tier where the patient's portion of the cost was onerous.

"You don't always know which drugs are on their formulary, and that can be a headache for a busy practice with limited staff," said Kamanda. "Most of the time we try to use generics instead of brand-name drugs to reduce costs. But even with generics, (insurance companies) will choose which ones they will cover."

Kirsten Sloan, senior policy director for the Cancer Action Network, noted that insurance companies always have been able to limit formularies. "Tiering and high cost-sharing for prescriptions are issues that predate the ACA," she said.

Similarly, insurance companies have long kept costs down by restricting patients to narrow networks of providers. But some advocates fear this trend may be exacerbated under the new health law.

"We don't have good data yet on how often cancer centers are included" in insurance plans, said Pollitz. "Sometimes these specialty hospitals have high prices and are not open to negotiating discounts with insurers. It's not clear who's going to blink first. Are the cancer centers going to worry that insurance companies can live without them, or are the insurers going to pay their prices?"

Despite these issues, the Virginia Commonwealth researchers concluded that, overall, the health care overhaul will have a positive impact on cancer patients by allowing for increased preventive care and the option to take time off work to focus on treatment without fear of losing their health insurance.

Pollitz agreed. "The only thing that can make cancer worse," she said, "is to not have a way to pay for the care you need."

This story was produced in partnership with Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

 

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Replies by: arthurjedi007, POW

In late april the lymph node on my collar swelled a lot for the first time.

I have a large tumor in my shoulder blade where they believe the mel travelled from to the lymph node. The CT part of the PET/CT shows the shoulder blade bone met soft tissue involvment at 8cm by 6cm.

I noticed for the past several days it and my shoulder feel hard as rock every couple days. So maybe like an idiot I massage them and they get back to almost normal softness. Is it ok for me to do that? Am I messing up the PD1 that might be causing this? Does anyone know what is going on?

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/31/2014 - 8:40pm
Replies by: Anonymous
Replies by: Anonymous, Momrn5

http://douglassreport.com/2014/05/25/sex-drugs-and-rotting-cows/

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Federal fling triggers massive meat recall

 

May 25, 2014

Sex, drugs & rotting cows

There aren’t a ton of rules in the Douglass household, but there’s one that kept me sane for years. Every afternoon, when my wife flipped on the tube and I heard the opening strains of One Life to Live, I ran out the door like a cat in heat.

Maybe it’s just my man gene kicking in. But there’s something about soap operas… about watching rich, beautiful people sleep with and murder each other… that I find tougher to swallow than a $2 steak.

But there’s a soap opera playing out right now in a filthy slaughterhouse in Northern California, and every man, woman and child in America needs to tune in fast. Because this little piece of theater isn’t going to entertain you much — but it just may save your life.

Federal investigators are finally getting to the bottom of a story I’ve been all over like a hobo on a ham sandwich — the sickening tale of how Rancho Feeding Corp. sold 9 million pounds of diseased, uninspected meat all across America.

And it’s a story filled with sex and lies that even the most talented Hollywood script writer couldn’t have concocted.

According to a Rancho Feeding whistleblower, the company’s plan to sell sick, cancer-riddled beef to your family wasn’t an accident — it was a heinously planned crime that had the potential to sicken MILLIONS of Americans. And it all happened right under Uncle Sam’s nose.

I don’t mean to shock you my friend, but that “fat” on your last ribeye may have actually been a stage-four melanoma. These slaughterhouse scumbags were sneaking cancer-riddled cows onto the factory floor under the cover of darkness, cutting off their malignant tumors (and even their heads) before processing them and fixing them with fake stamps of approval.

If you ask me they can’t fit these criminals with handcuffs fast enough for me — and before it’s all over, there may be a federal meat inspector in the next prison cell.

Because if you’re wondering how millions of pounds of diseased beef can get processed without the plant’s USDA inspector taking notice, the answer is easier than you think. Everyone likes a good nap after sex.

That’s right. The government lackey responsible for keeping your food safe was allegedly rocking and rolling with the factory foreman. According to eyewitnesses and plenty of X-rated text messages, the Rancho federal meat inspector and plant management were getting hot and heavy while deadly beef rolled off the line.

Who says government work doesn’t have its perks?

If you ever stepped one foot in one of these disgusting factory slaughterhouses, you’d never trust these cretins with your health again — and our government isn’t any more reliable. Start buying your beef locally, and never trust a supermarket steak.

 

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

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MixtaJones's picture
Replies 4
Last reply 6/1/2014 - 12:04am
Replies by: Anonymous, MixtaJones, shanemcdonald99

So I had blood work dond before my first yervoy infusion about 3 weeks ago (and a week after starting radiation) and the results show my testosterone levels were down a little. I just had another panel done before my sexing yervoy round and it showed it had dropped slightly more. Enough to the point we cocidered a cream to bring it up. 

Anyone have issues with testosterone levels dropping during radiation/yervoy/melanoma in general? 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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