Thursday, June 1, 2017

Still NED ~ Scan Graduation

It has been so long since I have updated! Steve had his 6 month scans last week at MD Anderson. The results came back that he is still NED (No Evidence of Disease)!  He has been NED for 32 months now! His doctor, Dr. Patrick Hwu said the likelihood at this point that the melanoma returns is very low.  He would like Steve to now move to annual scans.  I think I am having a harder time accepting that than Steve!  Steve is happy to only have to go once a year.  Understandably, he HATES going and also has to miss 2 days of work for scans/results every 6 months.  I know he needs to keep his RAD count down, but annual scans are just scary to me!  It is just an adjustment and I am sure all will be fine.

Steve went this week to his dermatologist, Dr. Duvic, at MD Anderson.  They have photos on file of all of his moles.  She noticed some change in pigmentation in one of his moles.  She did a punch biopsy on that and we will get the results probably sometime next week.  Crossing our fingers that it doesn't come back as a new primary (he had an unknown primary the first time).

Other than that, life is good!  Today was the last day of 9th grade for our oldest and the last day of 1st grade for our youngest.  Steve is in Las Vegas for a friends Bachelor party.  We're just living life!

20 comments:

  1. Hi,thx for sharing ur story. My mom is diagnose with stage 4 melanoma since january.we live in indonesia and the treatment for melanoma is very limited. I almost give up, but your blog give me hope❤️❤️❤️

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    1. I am sorry to hear about your mom. What treatments are they using in Indonesia? Keep the hope <3

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  2. Thanks. I needed to read a set of stories from someone who has been living with and winning against this. It's helped more than you can imagine - Now I have a bit of hope.
    - D

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    1. Stay strong and positive. I also have stage 4 mestastic melanoma. You're in my prayers❤️

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    2. Thank you. So very much.
      -D

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    3. I am so glad to give you some hope! So many people are living longer with stage 4 melanoma these days. Treatments only keep getting better! Hang in there! <3

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  3. Finally I've found an inspirational story! I also have stage 4 mestastic melanoma and recently began immunotherapy. My tumors have shrunk by 1/3 in 2 months. I pray for NED as Steve. It's a frightening journey and a lonely one.

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    1. i am so happy to hear your tumors shrank! That is excellent news! Steve is almost 4 years NED! Keep up the positive attitude! You've got this!

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  4. This is what my buds fighting: Melenoma Metastasis Stage 4 - Lungs + Spine cord compression. Surgery done for Spine cord Compression, Legs not working. Physiotherapy treatment On. Hospitalized from past 1 month. This cancer cell has become so maniac that its spreading very aggressively to other parts of the body.

    Treatment: Immunotherepy, ketyruda , Pembrolizumab 9 Dozes taken....Mix Response till last month. Now nothing seems working.

    New equivalent Medication Ordered - Nivolumab but looks we are running out of the time... hoping for miracle...please prey.

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  5. And interestingly he has two daughters...one is 5 and other is 2. Hows Steve doing now??

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    1. I am sorry to hear about your friend. I hope they are able to find a therapy that works for him. Steve is doing well. He is now a little over 5 years free of melanoma!

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  6. I am an Australian woman who had a melanoma on my right arm in the form of a mole 2 and a half years ago. This was removed and Sixteen months later it had spread to my right axillary lymph nodes. They removed them all and I have had 4 monthly checkups and pet scans which have remained clear. A few days ago I noticed an small egg size swelling in my right supraclavicular lymph node. I'm booked in for fine needle biopsy tomorrow and another pet scan next week. I have read everything I can about it and know it is probably metastatic melanoma and am so scared. I am being treated at the best cancer hospital and know they will do their best but as a mother and grandmother the statistics frighten me. I am so happy to read that your husband is 5 years free of cancer as it gives me hope. Lynne-Maree

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    1. Hi Lynne-Maree! Have you gotten your biopsy results back yet? Hang in there!

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  7. A doctor that had been treating me for 20 years suddenly died in March of 2016 of this dreadful disease. Apparently it had spread to his brain. It all happened so quickly and I called after he passed away. I had no idea. I survived thyroid cancer as a 15 year old and I remember someone at the hospital telling me at the time that the only cancer to have that would be better is skin cancer. Patently untrue. Perhaps they were trying to indicate that I would survive. I don't know. My thoughts and prayers go to everyone who has posted here. Hang in there. All is not lost. It never is.

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  8. Im sorry for the loss of your doctor. Hang in there! <3

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  9. Amazing story! My husband went to the dermatologist in 2016, who saw three basal cell carcinomas, and another that she thought didn't look right on his left shoulder. The biopsy showed melanoma.We were sent to MD Anderson where they did a wide local excision for his 1.9mm melanoma with mitotic activity. Sentinel node biopsy was clear.He followed up with labs, shoulder ultrasound, and CXR every three months x 2 years, then went to every six. Well. Our "every six" was a nightmare in April 2019. Since December, he had experienced significant weight loss and GERD symptoms along with back pain. GP wrote it off as gallbladder. GI specialist told us that melanoma is sneaky, and although EGD/colonoscopy unremarkable, he felt strongly that an abdominal CT should be done. We were shocked. A 12x11 cm mediastinal mass, a right pleural effusion, metastatic disease to both lungs. Lymphadenopathy/tumors in liver, kidney, lower 2/3 of esophagus, retroperitoneal lymphadenopathy also present. Did I miss anything? Then got the blow that it is in the brain and around the eye pressing on nerve with both extra and intracranial components, and in the bone. Ugh. Our lives have been turned completely upside down. He has lost 40 pounds. Just started Ipi/Nivo- that is really all they can do at this point. Prayers please.

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    1. Oh my goodness! I am sooooo sorry! That is a LOT to handle. How are things? What is the treatment plan?

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    2. Glad to have found your blog. Luckily we live in a suburb outside of Houston, so it is only a 30 minute drive for us. He just finished round 4 of ipilimumab and nivolumab, and has a rescan in two weeks to see how effective it was. This last course really kicked his stamina, and also gave him severe muscle pain, and knocked his thyroid out. It is sort of laughable that now he knows the pain of hot flashes haha. The options Dr. Wong gave depending on results: continue Opdivo for one year, infusions every month- or enroll in clinical trials. Hubby is not BRAF V600 positive, so is not eligible for targeted therapy. How is your husband? This is so much to take in- our comfy lives were literally turned upside down in a day. T

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    3. We are just outside of Houston too...in League City. I hope the scans show improvement! Fingers and toes crossed! As scary as clinical trials sound though, that's usually where the latest and greatest meds are. So, don't feel like yall are giving up if you go the clinical trial route. I had a friend that was sent home on hospice, found a different doctor, got in a trial and is now No Evidence of Disease!

      My husband is still doing great! He had scans last month and is still No Evidence of Disease! 5 1/2 years now!

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