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August 23, 2012 at 2:16 am #20579
Hello… Well i am new to all this … Never blogged before been reading alot on this website since I was diagnosed w/ IV metastatic Melanoma in July. I AM hoping I can utilize this through my journey as it seems to help alot of others. I am 45 yrs old , with a wonderful husband and two young boys, 10 and 7.
My story is as follows. Found melanoma in lung in June , had lobectomy.Surgery was tough road but finally recovered after several months.
During recovery had MRI of brain ..found 2 mets. Had stereotactic radio surgery to keep them from growing… Still waiting on followup to see how it worked, in fact I have an MRI again tomorrow.
Just had CT scan of chest and abdomen that showed more mets.. 2 in liver , 2 more in lung.
My oncologist here (IN, USA) wants me to start Yervoy to get mets under control before starting an additional radiation to liver . As I completely respect my Oncologist here., his specialty isn’t just Melanoma. I am wanting to go where they Eat , breathe and Sleep Melanoma. He is happy to refer me and has recommend MD Anderson in TX,or Sloan-Kettering and/or Dana -Faeber institute. Wanted to get feedback and recommendations.
It is pretty clear my Mel is aggressive and I want to “Fight like a Girl ” and kick it across AMerica but need help. By the way , right now I am feeling good and not having any “real ” complaints which makes all this seem unreal at times. I have had so much love and support from family and friends has been more than remarkable.
ShelleyAugust 23, 2012 at 3:37 pm #56191GabsoundParticipant
Sorry you are having to join this “club”. I can’t comment on the major melanoma centers, but wanted to say the combination of Iplimumab (Yervoy) and radiation can be especially effective.
Good luck and keep us posted.
JulieAugust 24, 2012 at 3:31 am #56192erinmay22Participant
sorry to ‘meet’ you this way. I think all of those mentioned are great facilities to treat Melanoma. You may have others also throw in Moffit in Florida. I’m treated at Sloan Kettering. Have had great experience with my care there.
Best of luck! Thoughts and prayers your way!
ErinAugust 24, 2012 at 4:01 pm #56193Catherine PooleKeymaster
I would go where they have a melanoma team, such as Sloan Kettering, Mass General (recommend Keith Flaherty there) and Johns Hopkins is another. Where do you live? There are only a few of these great centers. Also, I’ve heard great things about Dr. Infante at Sarah Cannon in Nashville. Tell us where you’d be traveling from for a better match.August 25, 2012 at 12:13 pm #56194
I live in Indianapolis Indiana, but I am willing to go where anywhere in the states. I got in at MD Anderson Sept 6 with Wen-Jen HWU, MD. I had thought there was a team there, is that correct? Though I have that scheduled, I am pretty anxious about not being able to start treatment for a few weeks.It appears this mel is pretty aggressive. I just want to make sure Im in the right Center.
Had an MRI of head 2 days ago , with no results back til Monday.August 25, 2012 at 2:39 pm #56195Catherine PooleKeymaster
Sure that is a well known center. Let us know how your appointment goes.August 27, 2012 at 5:29 pm #56196lizlizParticipant Hi Shelley,
Who is your Oncologist here in Indianapolis? I live in Indy as well. I also had metastis to my upper left lung and had the lobectomy in April of 2009. Dr. Kenneth Kesler (IU/Simon Cancer Center) performed the surgery and my Oncologist is Dr. Keith Logie with IU Health. I am very pleased with both doctors. I am currently NED going on 3 years. I think you are doing the very best thing by going to a melanoma center of excellence to battle the multiple mets. That is my plan if (When?) the melanoma strikes again.
I wish you the best, and I am so very sorry that you and all of us have to suffer from melanoma. God Bless you and I will keep you in prayer.August 31, 2012 at 1:49 am #56197
I am seeing Dan Milton, MD he is a HEm/ Onco of IN on north side St. Vincent Cancer Care Center. Robert Liebross is my radiation oncologist. I like them both very much. In fact as of today Milton was able to get a recommendation from MD Anderson and they are going to start my treatment here instead of having to travel to TX. I’m thrilled with that since my support is here and my boys.
They found additional brain mets from my MRI last week . They are putting me on Yervoy and Temodar combination starting next WEd.August 31, 2012 at 4:44 pm #56198Shirley ZParticipant
So sorry to learn of your melanoma diagnosis.
I’m glad your doctors were able to Communicate with the MD team for a recommendation. Being close to home and with your family is definitely an advantage, if it is possible.
Keeping you and your family in my prayers for good results.
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