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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casagrayson's picture
Replies 1
Last reply 7/31/2015 - 1:24pm
Replies by: clthomas2131

For those of you who have been diagnosed with lung mets, was it found on a simple chest xray, or was a CT or PET scan the thing that caught it?  

Strength and Courage,

Susan

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Community oncologists say the drug-price control recommendations by 118 cancer doctors that made national headlines last week are misguided because most of the doctors behind the suggestions work for large, teaching hospitals where cancer care is more expensive than at cancer clinics. Drug makers also criticized the recommendations for singling out drug prices, which account for about a quarter of cancer treatments and 1 percent of health care spending overall, and the Pharmaceutical Research and Manufacturers of America highlighted the patient-assistant programs that drug makers offer, although Gilead, which makes the hepatitis C medications that rekindled the drug-price debate, recently limited its patient assistance program.

 

 

Last week, the group oncologists published recommendations for reducing the high cost of cancer drugs in the journal Mayo Clinic Proceedings. The recommendations include many of the controversial proposals that have been around for more than a decade, such as letting Medicare negotiate drug prices, allowing drug imports and banning so-called pay-for-delay settlements between brand and generic drug makers.

 

Unlike PhRMA, Community Oncology Alliance Executive Director Okon said it's right-minded to work on policies that would lower drug costs, but he said doctors working at institutions with high cancer care costs should lower their own costs before criticizing others.

 

"My line here is 'Physician, heal thyself," Okon said.

 

Most of the doctors who endorsed the recommendations in the journal are employed by large teaching institutions, many of which receive 340B drug discounts, and nearly 30 percent of the signatories are employed by a small group of hospitals where cancer care is high even compared to teaching hospitals, he said.

 

There are 11 hospitals that Medicare reimburses based on their reported costs, instead of paying them like all other hospitals based on a predetermined amount for the clinical classification of services they provide. The Government Accountability Office reported in February that these 11 hospitals charge Medicare higher prices to treat cancer patients that aren't much sicker or more complicated than patients treated at teaching hospitals that are reimbursed based on the Medicare fee schedule. Based on data from 2012, the most recent available for the study, GAO found that Medicare would have saved $500 million had reimbursement for those hospitals been based on the prospective pay system that determines pay for all other hospitals. Of the 118 oncologists to sign the recent journal article, 34 work at one of those 11 cancer hospitals.

 

Okon said the 340B drug discount program drives up drug prices because discounts are never free. Independent outpatient oncology practices are not eligible for the 340B Program. The discount program gives hospitals the incentive to overuse expensive drugs, Okon said, and a recent GAO report supports that position. He also believes the discounts are drying up the market for generic injectable cancer drugs.

 

Okon said streamlining FDA drug reviews would create more competition, and the House-passed 21st Century Cures Act would be a good start. Rather than attack drug spending by itself, the Community Oncology Alliance supports H.R. 1934, which would create an Oncology Medical Home demonstration. The bill is cosponsored by Reps. Cathy McMorris Rodgers (R-WA) and Steve Israel (D-NY).

 

"Rather than isolate the 20-25% of cancer care costs attributed to drugs, we are targeting at least 75-80% of cancer care costs," Okon said in an email. "Additionally, by keeping cancer care in physician-directed community cancer clinics we are controlling costs more than anything that can be done to just control drug costs."

 

PhRMA also criticized the Mayo Clinical Proceedings commentary. The proposals in the journal would stop drug companies from inventing drugs and halt decades of progress in cancer care, the drug lobby group says. Cancer drugs represent a small share of overall health care spending and plans already often restrict the use of oncology medicines, PhRMA adds.

 

"This violates the basic purpose of insurance, and is why improving coverage for medicines needs to be a top priority for policymakers," PhRMA states. "At the same time, we continue to work directly with patients to help them get access to the medicines they need."

 

However, the Wall Street Journal reported that Gilead recently restricted its patient access program because it believes plans are taking advantage of it by denying hepatitis C medication to patients, which in turn has forced patients to enroll in Gilead's patient assistance program.--John Wilkerson

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stars's picture
Replies 5
Last reply 7/31/2015 - 11:09am
Replies by: dfeng, JoshF, DianaD, stars

Hi

Having my third WLE tomorrow, 1cm margins for stage 1 melanoma on my chest, about 5cm below my collarbone. Am bummed to have a mel on my trunk, I prefer them as far from my head/neck as possible. Am worried this one is going to make it tricky to wear e.g. v-neck tops. The 2mm excision got the whole mel, so hopefully the WLE pathology result will have no surprises. I  need to pin my doc down on what other moles she wants to biopsy - she mentioned 'a few' but I have no idea which ones she means as last time I queried this she only mentioned one, on my back. I really need to get all necessary cutting and path done so I can get on with life, it's just been weeks now of biopsy, excision, re-excision and now mention of 'a few' more. I'm changing up to a derm mid- August so hopefully I'll get more definitive (as in, not having to always go back for one more biopsy) care there. I've been working fulltime the whole time and I really, really, really want to get back to a somewhat normal life without spectre of biopsy/pathology hanging over me. I know WLEs are no big deal but I don't enjoy them one bit and feel a bit panicky before and during. Wish me luck,

Stars

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DianaD's picture
Replies 3
Last reply 7/31/2015 - 3:27pm
Replies by: DianaD, arthurjedi007

It's a long story and complicated, so I'm only going to provide a high-level summary here.  I received a diagnosis of liver disease today, of unkown cause.  I'm being referred to the hepatic clinic at the University of Michigan, where they have a world-renowned hepatic specialist.  It probably takes a long time for an appointment with her, so the goal right now is to get me into the system and seen by any of the doctors there.

Separately, I have two ugly, non-normal looking moles on my back, with all of the ABCDE characteristics.  My GP 's office is making an appointment for me at U of M for that, too--they are going to try to get me into the melanoma clinic, but if that's not possible, they will make the appointment with dermatology.  U of M dermatology biopsied my moles and performed a second excision of a dysplastic mole on me ten years ago, and it took a long time to get an appointment, so today I referred myself to the University of Chicago's dermatolgy deparment, using their on-line appointment request.  I received a message saying that someone would call me within 24 hours.  

Whichever medical center gives me the first appointment will do the biopsy, and I'll use the second medical center for a second opinion, regarding the pathology report and any recommended treatment.  

I'm hoping that I don't have melanoma with metastases to the liver or liver cancer.  Another possibility is that my immune system is attacking my liver (and kidneys--my kidney function is barely in the normal range).  I have Sjögren's Syndrome, which in the most serious and severe form, the immune system attacks the body's vital organs or systems.  There is no cure.  They use a chemo drug in the hope that it will slow the process down and in the hope that the patient can tolerate the treatment. 

The best case scenario is that the meds that I've been on for six years for my autoimmune disorders (I have four disorders) caused the liver damage, and now that I'm off all meds, my liver will heal.  That could take a long time--years, and my liver function may never go back to the level of functioning that I had.  

The worse case scenario is that the liver disease continues to progress, ending in liver failure and death, unless I receive a liver transplant.  

Melanoma and/or any other cancer are also worse case scenarios. 

Thank you for "listening."

 

DianaD

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cbeckner98's picture
Replies 3
Last reply 7/31/2015 - 1:51pm
Replies by: Tamils, Rawlins Mom, DianaD

Hi all,

I've written a few times - my Dad has stage 4 cancer in his brain and lungs and went through a course of whole brain radiation in late June.  Since he is BRAF negative, he just had his first dose of Keytruda/Pembro on July 20th - after tapering from steroids in early to mid-July.  In any case, he has been extremely fatigued since and has lost almost 15 lbs in the last two weeks (since everything tastes metallic and/or makes him nauseous).  Given all of this, has anyone had luck with the non-steroidal appetite stimulants?  Has anyone tried Dronabinol/Marinol (a version of marijuana)?  For those of you taking immunotherapy/anti-PD1 drugs after steroids, how long did the effects of the steroids linger on?  I would appreciate any recommendations on food which tastes good - beyond watermelon and pineapple, he isn't eating much (and no protein).  I'm worried that they are going to have to put him on an IV if he doesn't start eating and gaining back some weight.

Also, he just had his first post-radiation MRI on his brain today - 2 tumors were the same, 2 tumors were a bit smaller, and one bigger tumor in the frontal area increased in size.  Disappointing...  We are still holding out hope that Keytruda will make a difference - finally hoping for some good news in the midst of this!!!

Thank you as always,

Carrie

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Millykamp's picture
Replies 5
Last reply 7/31/2015 - 11:18am
Replies by: dfeng, Millykamp, stars, DianaD, JoshF

I have been having mixed emotions the last few days.. I try talking to people,about it but I don't want them to think I am one of those people that is overreacting on something that is nothing. I lost my dad to cancer when he was 38, pretty much lost half of my dad side of the family to cancer.    Now that I am 37 and found out I have melanoma the past few weeks has been nothing but biopsy, and more yet to come.  along with upcoming wide excision and SLNB.   I know my cancer is nothing to worry about.  But it's always on my mind.. I guess I am scare of not knowing what to expect.       I am just curios.... Do people ,ever get those days where you just wanna have a big hug and just cry???

 

i am so glad I found this site and glad to see people' from around the world just come together and support one and another .    Thank you!!! 

Melissa 

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/30/2015 - 3:39pm
Replies by: Millykamp, Anonymous, Kim K, stars

Hi 

I was just diagnose with Melanoma 2 weeks ago and is being sent to see an oncologist  at the university of Michigan in a few weeks and already know I will have to undergo surgery to re excision and sentinel lymph node biopsy 

i am not sure what I am. So confusing..  here is my report ::::::

Malignant Melanoma  invasive to Clark IV, Breslow depth 1.33 vertical  and T2a

nudular type 

ulceration is absent 

mitoioc rate is 8 

tumor regression is equivocal

 

 

So does this mean I am a stage 1a or am I stage 2a?    How was the sentinel lymph node biopsy I read mix view on it, reading it painful and burns.  I have been told I will be sleeping the whole time.  I am just overwhelm.... 

Melissa 

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Replies by: marta010, Ed Williams

My father's melanoma has spread to the brain, lungs and abdomen. His brain tumor responded well to radiation. He then had 4 rounds of Yervoy which were not successful. He has completed 4 treatments of Optivo, but the area around the (dead) brain tumor is now experiencing significant swelling.

The doctors mentioned Avestin but were not sure if there were any statistics about using that to treat Melanoma and in conjunction with Optivo. 

I'd be interested in hearing about any experiences anyone has with this. 

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JoshF's picture
Replies 6
Last reply 7/31/2015 - 8:46am

Well PET last week showed NED. I was a bit nervous because she said abdomen was bright but she felt it was contrasting and wanted to wait on offical radiologist reading. Though she was comfortable with results; I wasn't until I received official word. I've been very fortunate and grateful to my docs and the support I've received here.

We discussed scanning and for those of you familiar with my story, I had the local recurrence this past Jan after doing IPI & IL-2 Combo in Jan 2014. I didn't have clear margins prior to starting treatment and they felt then that I may possibly need surgery after treatment due to perfusion(?). Regardless I had the 3rd recurrence which basically would put me at only 6 months NED now. My onc feels that we can push out scan to 6 months as she has concerns about all the readiation I've been exposed since the fall of 2013. I know many of you have been through more....I'm just very conflicted I what direction to go here. I like the scans to know what's going on...really I guess you like them when they come back NED. There is a tremendous amount of scanxiety a few weeks prior to scan. I guess I just want to give myself the best chance to stay ahead of it because after 3 recurrences I can't stop thinking of if it comes back...I always think like when it comes back. It's hard to balance all of this and if anyone has suggestions...I'm always open to hearing them.

Wishing you all the best!

Josh

Let's work for better treatments....for a cure!!!!

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AshleyS's picture
Replies 7
Last reply 7/30/2015 - 1:34pm

Hey guys,

I had my fourth Opdivo dose today (after 3 ipi/Opdivo doses and 1 dose of ipi alone). I have 1 more dose here in ND before I head down to TX for scans at MD Anderson. 

I feel like I've been handling everything so well, but then this morning I felt a lump where a former tumor was located. Ugh. It's pea sized, but it's got my head spinning. 

I've also been dealing with lots of fatigue and stomach issues (cramping/diarrhea) from the treatments. I can handle that, but I hate that I'm "out of commission" for my kids (2 1/2 and 8 months) and my husband. This gets me more than anything. 

Thanks for letting me vent. 

Ashley 

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mike_nj's picture
Replies 5
Last reply 7/30/2015 - 12:52pm
Replies by: Janner, Anonymous, stars

Hello All,

Skipped a year but went for X-Ray and all came out clear for chest.  They switched me to X-Rays after many years of Ct & PET scans.  About 8 years ago, I set off radiation detectors after a PET at the Port Authority bus terminal in NYC on my way home.  Three police officers converged and I explained that I had a PET and I was released to go.

Stage 1A in 1999 and then progresed to stage 3B in 2004 with macro sized node in right axilla.  Had the surgery, radiation, and clinical trial with mel-43 vaccine (Dr Slinghoff from UVA) in Pittsburgh.

Lymphedema in right arm since then with limited mobility.

I feel very fortunate and am grateful to God for my good run but I know that follow ups will be endless with this disease.

My hope is that all new patients understand that even if one progresses (as I did), there are still options and hope for decent outomes.

Next on agenda is colonoscopy and cardio checkup and a diet to shed some weight.

My younger sister was recently treated for melanoma in-situ and I gave her bad advice but luckily Janner came to our rescue with sound and correct advice.  Thank you Janner.

Mike from New Jersey

 

 

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DianaD's picture
Replies 6
Last reply 7/29/2015 - 2:53pm

I have two separate issues going on at the same time: 1) routine blood tests indicate two types of liver disease, tissue damage, as evidenced by high liver enzymes; and, 2) mole on my back that is suspicious of melanoma.  I had an abdominal ultrasound done and I received the results today--"essentially normal," with the one finding that appears abnormal on my reading of the report is calcifications on my spleen.  Liver, gallbladder, bile ducts and pancreas appear normal.  My primary care doctor is looking at my mole this Thursday, 7/30/15, and, based on photos that I sent him of my mole, and my prior history of dysplastic moles, he has already told me that he is referring me to dermatology at the University of Michigan Health Center.  My question is whether the abdominal ultrasound would have likely spotted a cancer metastasis from the mole on my back, if the mole turns out to be melanoma? 

As added information, the liver damage is most likely caused by meds I've been taking for several years for several autoimmune disorders. 

DianaD

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DianaD's picture
Replies 10
Last reply 7/29/2015 - 11:18pm

Hello, my name is DianaD.  I'm a 57 year old female, living in Ann Arbor, Michigan.  I have a mole on my back with all of the ABCDE characteristics.  Also, ten years ago, I had moles removed from my chest that were biopsied and that were dysplastic.  And, on the exact site where the current suspicious mole is located, I had two skin tags removed.  Finally, I have an uncle that died from melanoma. 

 

I have an appointment with my primary care physician on Thurs., 7/30/15; he is going to look at the mole and give me a referral to dermatology at the University of Michigan Healthcare Center at that time.  I've already sent my physician photographs of the mole, along with my history, and he agrees that the mole is worrisome.  

I'm glad that I found this forum. 

Thank you, 

 

DianaD

DianaD

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Julie in SoCal's picture
Replies 10
Last reply 7/31/2015 - 10:42am

Hi there Friends!

Yesterday I had Pembro infusion #5 and it seems to be working!  When I started this round, I could feel four pea to grape sized in-transits, now I can't find any! Rock Star Doc couldn't find any either (and he's the expert!!!).  So we did the happy dance as he writes NED (no evidence of disease) on my chart again.

The other news is that my Rock Star Doc has moved to a different hospital and they're still getting everything set up for infusions. Their temporary solution has been to use the VIP rooms--nice, big room to myself, private nurses, coffee or tea, and a TV to watch if I so desired. Rock Star Doc said not to get used to it...that might be difficult wink emoticon

 

 

Wishing you all NED!

 

 

Shalom!

 

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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jvictoria's picture
Replies 7
Last reply 7/29/2015 - 12:19am

Hi all, just wanted to find out how bad the post-operative effects of this procedure are going to be...

Will I still be able to function post-recovery... basics (using the arm for day to day activities), sports (cycling)

Thanks

Juan

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