Home Forums Melanoma: Stage III Pet Scan Results

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  • #20637
    msue5
    Participant

    Had routine Pet/Ct on Tuesday and appt today for results. They found a new enlarged aorticopulmonary window node measuring 1.8 x 1.4 cm with an SUV of 9.1. Highly suspicious for metastatic disease. I am having a Chest Ct tomorrow am and an appt with Thoracic Surgeon tomorrow afternoon. The most obvious diagnosis is Melanoma but Onc also said Lymphoma is a possibility due to the meds I took for Lupus. They put you at an increased risk for Melanoma and Lymphoma. This will be removed with a small incision at the top of my sternum and possibly just a day surgery. I started out posting on the Stage 2 Board, then to the Stage 3 board and probably will be the Stage 4 Board soon. I will know more after the Chest CT and Dr. appt tomorrow. I actually am not freaking out. Even the Dr commented on that. I think since my groin node had extracapsular extension with evidence of melanoma in the soft tissue around the node I knew it probably was going to show up somewhere else.

    Mary Sue

    #56600
    Catherine Poole
    Keymaster

    Sue,

    You are amazing to be calm. I would be sure to ask for the BRAF test for your tumor tissue to make sure you can go for those therapies if needed. I am not sure what medication would cause either lymphoma or melanoma, so I would question that. Let us know what course of action your doctor suggests.

    #56601
    msue5
    Participant

    Maybe I’m not calm but in a haze! I am Brag neg and Ippi will really flare my Lupus up.I will never get in a trial due to my lupus. I would have to take my chances with Ippi. Both my Rhematologist and Onc have said they would agree to give it and just see how I would react. The. Lupus med was Methrotrexate.I also have to have a Brain MRI due to some balance issues but I really think those are from my abdominal surgery that has caused a large Abd bulge that has influenced my center of gravity.

    Mary Sue

    #56602
    GaylaB
    Participant

    Stay strong and have faith. Without my support system I would not of made it this far – I have you in my prayers. Did you read the article today on MD Anderson’s new study? I saw it on Facebook. They have launched a $3 billion fight against common cancers and Melanoma is one of them. It gives us hope for the genious scientists and doctors to find a cure for this horrible disease.

    Gayla

    #56603
    msue5
    Participant

    I had a chest Ct today and then met with the Thoracic surgeon. He said the node sits in between the aorta and the pulmonary artery. He is going to use Robotic Surgery and go in between 3 ribs and it will probably be a day surgery unless there are complications. Then wait for biopsy results. My surgery is set for Oct 4. Thanks Gayla how are you feeling?

    #56604
    Linny
    Participant

    msue5 wrote:

    Maybe I’m not calm but in a haze! I am Brag neg and Ippi will really flare my Lupus up.I will never get in a trial due to my lupus. I would have to take my chances with Ippi. Both my Rhematologist and Onc have said they would agree to give it and just see how I would react. The. Lupus med was Methrotrexate.I also have to have a Brain MRI due to some balance issues but I really think those are from my abdominal surgery that has caused a large Abd bulge that has influenced my center of gravity.

    Mary Sue

    This is going to sound crazy, but please bear with me. Are you 100% certain that you have Lupus and not Lyme Disease? Both diseases can cause elevated ANA readings and Lyme has frequently been misdiagnosed as Lupus. If you actually have Lyme and not Lupus then that may make other melanoma treatments available to you. It may be worth considering making an appointment with a Lyme-literate physician to get an opinion. A negative Lyme test result doesn’t mean you don’t have Lyme. I apologize in advance if I’ve treaded on a sensitive issue.

    #56605
    msue5
    Participant

    Hi Linny

    I’m sure its Lupus. When they get an elevated ANA they then break it down into specific antibodies and mine showed an elevated RNP which is specific for Lupus and Scleroderma. My symptoms fit exactly with Lupus. I had severe joint pain in m,y feet and joint pain only in my knuckles and wrists. Also had painless mouth sores and fatigue. I was diagnosed at age 52 and usually there is no organ involvement when you are diagnosed at an older age.I wish I could erase that diagnosis from my records! I get about 4 flareups a year and now I can’t take the steroids that helped me get through the rough times.Every single trial I have looked at excludes autoimmune diseases. At least I could try Ippi since it is approved and it would be up to my Onc’s discretion and he has already said I could take it if needed as has my Rhematologist. I would just have to treat the joint pain with anti inflammatories and pain medicine.

    Mary Sue

    Tt

    #56606
    Linny
    Participant

    Dang! I was hoping that would be a loophole for you so that your melanoma options wouldn’t wind up being so limited. Hopefully you won’t need the Ipi. Would anti PD-1 be an option for you?

    #56607
    msue5
    Participant

    Just returned from MRI of brain. Its starting to sink in that this is real. My anxiety symptom is extreme distraction. I find myself in a room and have to stop and think why I am there. I know everyone has this to some degree but mine is much worse when I am anxious. I haven’t tried the meditation yet. My way to cope is to listen to music. Some upbeat and some sad. I find listening to sad music comforting in a way. It makes me face the hard realities of this disease. But I have to add in upbeat too. I defy anyone to listen to Jason Mraz’s “Living in the Moment” and not smile. It should be the MIF theme song.I have an appt at with the Med Onc at Melanoma Center to discuss what will come next if this node is Melanoma. I will be using my Ipod a lot this week.

    Mary Sue

    #56608
    Shirley Z
    Participant

    Hi Mary Sue,

    I’m so sorry to hear this news. I just cannot believe all that you have been through. I’ll e-mail you tomorrow but wanted you to know you are in my thoughts and prayers.

    Shirley Z

    #56609
    msue5
    Participant

    Thanks Shirley.

    #56610
    dkmc
    Participant

    Mary Sue- I hope you can stay at stage 3 & not have to join those in the Stage 4 forum. It is an amazing thing to go through. Don (my husband) started at stage 3, then lung mets after 2 1/2 years & now after ipi NED! It has been 3 1/2 years now since DDay(diagnosis day). I had to wish you all the best & I sooo agree Mraz’s new CD, especially that song…haha we belt it out everytime we play it! Stage 3 is a hard place to be – there are so limited options, I remember the frustration. Don never qualified for a trial & we wonder now if he had been given ipi at stage 3 would he ever have gone to stage 4. But you had to have ” measurable disease” back then. The good news is we really have seen an great deal of promising treatments coming along.

    Good Luck! Karen

    #56611
    msue5
    Participant

    Thanks Karen for thinking of me. I had an appt today with the Med Onc at the Melanoma Center and he said that if node is pos for Melanoma and is completely resectable that he would want to hold off on any therapy at this time. He said you may need it more in the future and the evidence is not there that it will prevent recurrence. He also said that he wants the surgeon to take another node higher up in the chain to make sure there is not evidence of microscopic disease in which case I would start Ippi. He was fine with giving the Ippi even though I have lupus since I have no organ involvement. He also talked about hearing about trials possibly starting that will test how patients with autoimmune disease fare with immune based therapy. He is going to get back to me on that. I’m glad you enjoy the song too. It makes me smile every time I hear it.

    Mary Sue

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