Need advice: Best Hospital specializing in metastatic melanoma??

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5/14/2011 5:46pm
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Replies: 19

My mother was diagnosed this week with metastatic melanoma.  I need to get her in the best cancer center/hospital that specializes in her type of cancer.  Would like input on which of these 3 top cancer centers is best suited for the treatment of metastatic melanoma:  MD Anderson, Sloan-Kettering, or Mayo?  Time is of the essence so your insight is much needed & greatly appreciated.  Thank you, Tonya

Hi Tonya,

 

I don't know that there is a single "best" - as with so many aspects of melanoma, it depends.  I personally think MD Anderson is a good place to start.  Of the three you listed, I'd put that at #1, MSK at #2 and I'd skip Mayo for melanoma.

I hope you are able to find a good doctor & treatment plan for your mom.  This board is an excellent source of information & encouragement.

 

Lori

Lori,

Thank you so much for your reply.  We're from a small town in NC so I knew when we got the diagnosis this week that I had to locate the best center for her as resources are some what limited in our hometown. I am learning - researching, asking questions, scouring websites, forums, boards, etc. to be the best patient advocate I can for my mom... as I'm sure it is with your mother, my mom is everything to me.    

Again, thank you.

Tonya

I agree...skip Mayo.I went to Mayo Clinic from June 09 to May 2010. They are great and helped me get to being NED...but it was through surgery and radiation ( they gave me 6 to 9 months and said  "we're sorry"...I also went to the NIH and and Fred Hutchinson in Seattle...I think Fred is a great place to go personally. I also think Moffitt Cancer Center in Tampa is one of the best and Dr Weber is No# One in my book! Thats where I am at now and and did two 12 weeks of a vaccine trial and now doing boosters of  the anti-pd-1 every 3 months ( with scans, blood work etc). Hoping to remain NED ( No Evidence of Disease)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Tonya,

You don't say where you are.  You could travel halfway round the world for "the best" and have a highly regarded center right under your nose.

Start with a melanoma specialist in a good melanoma center. 

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

We posted at the same time. Now someone from NC area can fill you in.  Also, the board is rather slow on the weekends

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Good point Jerry.  My mom lives in Gastonia, NC. Outside Charlotte, NC.  We also have family in Alabama.  I have seen comments about University of Alabama - Birmingham Cancer Ctr & Duke in NC. 

Good point Jerry.  My mom lives in Gastonia, NC. Outside Charlotte, NC.  We also have family in Alabama.  I have seen comments about University of Alabama - Birmingham Cancer Ctr & Duke in NC. 

Tonya,

I'm from NC, Conway in Northampton County to be exact. I go to Duke's Morris Cancer Clinic. My surgical onc is Dr. Douglas Tyler, a melanoma specialist. Right across the hall from him is Dr. Amy Abernethy, a melanoma specialist oncologist. I've seen her a few times, but haven't since I opted not to pursue Interferon, but should I need treatment, she's who I'll see. In the same building, in the dermatology dept are melanoma specialists in derm, and should your Mom develop lymphedema, they have a specialist in that in the physical therapy dept. I can highly recommend each and every one.

As a matter of fact, you can find Drs. Tyler and Abernethy on the Duke Health site. Dr. Tyler also runs a melanoma clinic, I think it's still every Friday, and he only sees mel patients that day. He sees us every day, but that day is only for mels.

All the best.

Lord, in Your mercy, lead Tonya and her Mom to the dr that's right for Mom. Amen.

Grace and peace,

Carol

Tonya - please tell us more about your mom's diagnosis if you feel comfortable doing so.  We all have a tendency to think  that the diagnosis is a death sentence, but that's not necessarily the case even with melanoma that has metastized.  There may be some people on the board who have mets similar to your mom's and can tell you about their treatment.

Fen

Please bear with me as I'm very much a novice on the subject matter -

2008 malignant skin cancer diagnosed on back of left leg by dermatologist.  Surgically removed. 

2010 mammogram showed a spot but was thought to be just a cyst so no action taken (mistake!)

2011 April - mammogram uncovered prior spot had increased in size so sent for ultrasound/biopsy.  Determination metastatic melanoma. 

2011 May - Pet Scan/ Brain CT/ chest xrays confirmed melanoma had spread from original site on leg to 4 areas:  right breast, soft tissue in lower pelvic area, upper left buttock, and 1 barely visable spot in one of her lungs.

Weds, May 18 - We have a follow up appt with the Oncologist, Dr Ayrons.  At our consultation last Thursday, he initially spoke of 2 possible courses of action:  Clinical trial (Carolinas Medical in Charlotte with a Dr White?) or possibly the newly approved Ipilimumab... but was careful to say he wanted to first research both options over the weekend, speak to Dr White about the trial to see if mom was even a candidate and present her case to the "Tumor Board" Weds morning. 

My mother has no other illnesses and is in good health for a 69 year old female.

She has recently (over the last 2 weeks) complained of waves of nausea upon waking and early evening.  She also has some soreness in her lower abdomen (she described as similiar to menstrual cramps).  When relayed to oncologist, he attributed to anxiety and prescribed her pain medicine & nausea medicine for the short term.

This is the point we are at..... hope this helps.

Thanks!

Tonya

Please bear with me as I'm very much a novice on the subject matter -

2008 malignant skin cancer diagnosed on back of left leg by dermatologist.  Surgically removed. 

2010 mammogram showed a spot but was thought to be just a cyst so no action taken (mistake!)

2011 April - mammogram uncovered prior spot had increased in size so sent for ultrasound/biopsy.  Determination metastatic melanoma. 

2011 May - Pet Scan/ Brain CT/ chest xrays confirmed melanoma had spread from original site on leg to 4 areas:  right breast, soft tissue in lower pelvic area, upper left buttock, and 1 barely visable spot in one of her lungs.

Weds, May 18 - We have a follow up appt with the Oncologist, Dr Ayrons.  At our consultation last Thursday, he initially spoke of 2 possible courses of action:  Clinical trial (Carolinas Medical in Charlotte with a Dr White?) or possibly the newly approved Ipilimumab... but was careful to say he wanted to first research both options over the weekend, speak to Dr White about the trial to see if mom was even a candidate and present her case to the "Tumor Board" Weds morning. 

My mother has no other illnesses and is in good health for a 69 year old female.

She has recently (over the last 2 weeks) complained of waves of nausea upon waking and early evening.  She also has some soreness in her lower abdomen (she described as similiar to menstrual cramps).  When relayed to oncologist, he attributed to anxiety and prescribed her pain medicine & nausea medicine for the short term.

This is the point we are at..... hope this helps.

Thanks!

Tonya

Tonya,

I go to Dr Amin and Dr White at Blumenthol in Charlotte.  I've been pleased with both for their compassion and the research they've done for me.  As a matter of fact my case is once again being presented to the tumor board at CMC on Monday.  Dr. White's nurse Sandy is a fantastic lady who will go the mile for you.   I live in Anderson SC and drive right through Gastonia (today I stopped at Mary Jo's on the way back from my MRI).  Both Doctors consult with each other and both attend the tumor board meetings (they call them a melanoma conference).  I've also had both of them in the room with me at the same time twice when needed. Their offices are down the hall from each other and they call each other into the office when a second opinion is needed. 

For other opinions you could also go to Duke and to Chapel Hill.  Since you are so close to Charlotte I would start there. If you find out that your mom is B-raf positive you are also only a few hours from Nashville where there are many trials. While MDANderson and MKS are wonderful hospitals it also will take a lot out of your mom to travel.  The first step any mel specialist will do is a biopsy if one hasn't already been done. 

Please let me know if you want to talk. 

Linda

Stage IV since 06

Yes, it does help and you are clearly doing the right thing by finding a melanoma specialist.  Melanoma is a different kind of cancer and you need to find a melanoma specialist who understands all the new treatments and options.  General oncologists, no matter how well trained, just don't have the specialized knowledge necessary to direct melanoma treatment.

No one can say how your mom will do, Tonya, but there are people on the board whose cancer was more widespread than your mom's is and are stable or NED (no evidence of disease).  A couple of posts down from yours is a post from Carol b.  You can read her profile and current treatment to get some idea of what is possible. Check out IL-2 treatment.

Best of luck to you and your mom.  The bulletin board is a little slow on the weekend so please post again on Monday if you don't get the info you need.  There are many knowledgeable people on the board....I'm just not one of them.

Fen

Tonya, I'm also from NC (Goldsboro).  I went to NIH in 1992 and had a complete response to IL-2.  Of course, they do more now than just IL-2.  Your mom's doc could refer her there; it's another place to consider.  UNC also has a melanoma clinic.  Best wishes for your mom.

Rick,

Thank you for the feedback. Where is NIH located? Also, if you don't mind me asking, did you have metastatic melanoma and if so, where was it located? 

Thanks again,

Tonya

Sorry for the delay in replying.  NIH is the National Institutes of Health, of which the National Cancer Institute (NCI) is a part.  It's a US government health research facility in Bethesda, Maryland, just outside Washington, DC.  If you are accepted as a patient there, there is no charge for your treatment because you are essentially a research subject.  Dr. Steven Rosenberg was one of the pioneers in developing immunotherapy for metastatic melanoma, and he is still there.  Yes, my melanoma had metastacized to both lungs and various subcutaneous sites, but here I am nearly 20 years later.  Best wishes to you.  If you need more info, just ask.

Rick,

I absolutely LOVE IT, LOVE IT, LOVE IT, when you stage 4 people tell us you had lung, brain, or liver mets and ARE STILL ALIVE so many years later. You made me smile REAL BIG today.

Nicki, Stage 3b, scalp

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

My husband was just diagnosed with melanoma from a biopsy of one of many tumors that have been found in his body. He had no skin lesions. We thought he had a bad disk because of back pain. One of the tumors is in his brain. We are in the Boston area. I am trying to get appointment at Dana Farber. We have a home in SE Florida also -- any top melanoma centers in the Ft. Lauderdale/West Palm Beach area? I'm so scared! We are only 62 and are about to start the next leg of our journey together -- we've been together since age 16 -- and I can't live without him!Ft  se ofse

My husband was just diagnosed with melanoma from a biopsy of one of many tumors that have been found in his body. He had no skin lesions. We thought he had a bad disk because of back pain. One of the tumors is in his brain. We are in the Boston area. I am trying to get appointment at Dana Farber. We have a home in SE Florida also -- any top melanoma centers in the Ft. Lauderdale/West Palm Beach area? I'm so scared! We are only 62 and are about to start the next leg of our journey together -- we've been together since age 16 -- and I can't live without him!Ft  se ofse