• Keith59's Avatar

    Keith59 posted an update

    Big...big...big day tomorrow. I find out the results of my CT scan after four rounds of PD1. Please pray for schrinkege!

    16 Comments
    • SunnyB's Avatar
      SunnyB

      Dear Keith, I have had venurafenib for melanoma that cleared the tumor from pancreas and kidney and reduced lymph nodes from mediastinum after taking it for 1-2 months. Maybe is an option for you? I am now on chemoterapy waiting for anti PLD1 study...

      over 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      Well, that's not what we want to hear. When will you find out what the next step is?

      over 5 years ago
    • Margi's Avatar
      Margi

      An IPI response gets bigger (swells) when the tumor is reacting, maybe PD1 reacts that way also.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Been a long day at Vandy.....had a CT scan to see if treatments are working....results on the 10th. Had a permanent drain tube inserted for the fluid buildup. In some pain...hope the meds take care of it.

  • Keith59's Avatar

    Keith59 posted an update

    Just got in from a long day at Vanderbilt. Got tapped...drained 4 1/2 lbs of flood from my lung. Had labs....seen the oncologist, and got fourth infusion of PD1..... Blahhhh

    5 Comments
    • StrongSteph's Avatar
      StrongSteph

      Good to hear. :)

      over 5 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I came to your page to see if you're okay ... i hadn't seen a post from you. Glad you're feeling better but really sorry about all of that fluid. Hang in there!

      over 5 years ago
    • mbeshey's Avatar
      mbeshey

      Man I wish you lived closer I'd bake you some cookies after all that stuff!!!
      Get better soon!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Finally home......! After two blood infusions and draining 3 1/2 lbs of flood from my left side...I am home. They think the problem is the tumor is made as a result of the PD1 treatments and is what is bleeding. If the flood returns...they will stall a drain in my left side so I can drain from home. Soo good to be back on WhatNext. Thanks for all the prayers...well wishes...and wonderful comments on the wedding.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Glad you're home Keith, as they say, "there's no place like home", and man there's no joking about that. Especially after laying in a hospital bed for a week or so! Glad to have you back amongst the ranks, and I hope that pesky drainage stops for you.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Good morning my fellow survivors. I hope this days is a glorious day for you! Busy busy busy for me with wedding preparations for Saturday. So thankful for my health and strength to able to help. God is good!

    6 Comments
    • AmyJo's Avatar
      AmyJo

      Ahhhh.... I see it's your daughter!!! Well Congratulations to her!

      over 5 years ago
    • Keith59's Avatar
      Keith59

      No me @AmyJo....my 26 year old baby girl! @Sunnysideup...it's outside. Weather should be perfect!

      over 5 years ago
    • WISmom's Avatar
      WISmom

      May it be a wonderful, happy, beautiful time. Make some precious memories! Congrats to her and your family!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Since I started steroids a few days ago for my adrenal blowing out.....sleep is hard to come by. Taking Benadryl helps some...not much. Any suggestions? Can't take sleeping pills....onc said no. Maybe a big glass of wine....

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      I just finished my steroids a week or so ago for this pneumonia. They jack me up too. I have used the benadryl and it works for me. Helps a little I should say, I was waking up at 4/3/2 in the morning and couldn't go back to sleep. After I got used to them it got a little better. The wine might help too

      over 5 years ago
    • AmyJo's Avatar
      AmyJo

      Augh! The dreaded steroid induced sleeplessness!!! I hate that feeling. I've been down that road many times. The only thing that helped was benadryl, but I took more than the dose in order for it to work. Good luck!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Spent the evening and night with my Grandkids. Their hugs....smiles...and laughter are magic. There's not a care in the world when I am around them! I hope you take time to share life with your Grandkids.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      yep, I don't have grandkids but I get that feeling when we have family get togethers. Just had one last weekend for my sister in law. It's her 50th birthday so we had a cook out on Sat. and a breakfast on Sun. Had her son, my nephew, in from out of town and that made it lots better. Glad you got to spend some time with them.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Thanks Greg....I've always been happiest when with my family! Such special moments. Tell your sister in law happy belated birthday!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    MELANOMA TREATMENT TRIPLES LIFE EXPECTANCY

    Melanoma has gone from being Australia's national shame to the poster child of cancer treatment in less than half a decade, as new ways of attacking cancer have been developed.

    Complete story: http://www.smh.com.au/nsw/melanoma-treatment-triples-life-expectancy-20140906-10ddzs.html

  • Keith59's Avatar

    Keith59 posted an update

    I have a question for all my melanoma warriors out there. I was wonder what hospital and state are you receiving treatment. Myself it's Vanderbilt Hospital in Tennessee.

    10 Comments
    • Keith59's Avatar
      Keith59

      It's good to know we have options when it comes to picking and choosing our place of treatment. Blessings and healing to you on your journey.

      over 5 years ago
    • melanomamama's Avatar
      melanomamama

      I'm now at Providence Cancer Center, Portland, Oregon - Dr. Brendan Curt. I was previously at Dartmouth-Hitchcock in NH, Dr. Marc Ernstoff.

      over 5 years ago
    • sksully7698's Avatar
      sksully7698

      Bentonville, AR @ Highland Oncology Group

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Just finished 4/4 Yervoy infusions two weeks ago. New scans show tumors have slowed, but not regressed as hoped. Begin a PD1 trial on Monday. How similar are the side effects of these two drugs? Any advice on what to expect?

  • Keith59's Avatar

    Keith59 posted an update

    Just opened my bill for my 4/4 infusions. $115,000. After insurance.....I owe...$0.00. Now that's sweet.

    3 Comments
    • azsuper's Avatar
      azsuper

      yep it is

      over 5 years ago
    • Linda1968's Avatar
      Linda1968

      That's great! I am grateful as many others in Canada can be too that even without extended insurance we don't pay for any treatment that is approaved. Mind you in the USA you get all the newest treatments before Canadians.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Linda I hope everything turns out well for you my friend. Prayers of healing and peace!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I took my last Yervoy infusion two days ago. I'm scheduled for a CT scan in two weeks to see if things have shrunk. My next step possible could be a clinical trial called PD1. Is anyone familiar with this trial?

    2 Comments
    • jcap's Avatar
      jcap

      Hey Keith. I'm due for my last yervoy on 8/28 and then a scan a month later. If any cancer remains the same size as before, my doc at Sloan Kettering said no other treatment for now….sit and wait. But if anything has grown or changes, PD1 is next. I've heard awesome things about this trial and that it actually may not even be a trial soon due to possible FDA approval. It's supposed to be more durable than yervoy although treatment is more often. Not sure about side effects. Have you encountered any side effects from yervoy? Last weekend i was a mess…vomiting, diarrhea, dehydrated, fatigue. I actually ended up in the ER at Sloan, but all was okay. What stage melanoma were you before treatment?

      over 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      I haven't had that, but I've heard about a few people talk about it on the site before. Post this as a question on the questions page and more people will see it and maybe have some info for you.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I'm curious to know that since your dx, would you consider yourself more religious...praying more often...or more withdrawn and bitter at God?

    7 Comments
    • Keith59's Avatar
      Keith59

      If you would like to continue this discussion by email...let me know. Hugs and blessings!

      over 5 years ago
    • melanomamama's Avatar
      melanomamama

      Thanks for the offer, but I'm busy collaborating on a book about letters home from the Vietnam War, and I must ration my email time accordingly. This is not a case of "contempt prior to investigation." I have spent a thoughtful lifetime on this topic and don't want more input. If my kind-hearted Christian pastor father couldn't convince me after 18 years of living under his roof, I don't think a few emails will do much more than make you feel like you put out your best effort, which you already did. Both my mother and my father graduated from Yale Divinity School - my dad as a pastor, and my mother in Christian Education. I have a piece of jewelry that documents my perfect attendance in Sunday School for eight years. So I've made my own well-considered choice, and I'm done with this topic.
      I hope you are doing well on your cancer journey.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Thanks again for your comments. Again it was never my intention to spark debate. This is an age old topic that has been debated for centuries. To me....it's settled at each individual's death. God bless you on your journey as well.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I hope all my pals have a wonderful day today! Do something today you have been regretting or avoiding. You will be glad after you do it. For me....it's walking. Gonna shoot for a half mile! Let me know what you do......blessings

    8 Comments
    • daca1964's Avatar
      daca1964

      I went on my first Ride with a motorcycle club with my own bike. It was awesome. After I got sick and was feeling better I decided to get my motorcycle license and bought a bike and now I feel free.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      You are right Linda1968....we all have our good and bad days. Rest may be the one thing we put off at times.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Daca1964....that's great news. A good ride on a motorcycle could be just what we need. Congrats on getting your own bike! I pray you have many more rides soon.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I spent 3 hours at a get to gather in my honor last night. It was an amazing night. Nothing like spending time with family, friends, co-workers, and former students. It was truly an amazing...healing....night. Just wanted to share! Blessings my friends.

    4 Comments
    • Keith59's Avatar
      Keith59

      That is fantastic Linda1968! This same group also helped me that night financially raising over $3,800.00 dollars to help with expenses. I am truly blessed with a great support group in so many ways. I hope the Yervoy works well for you. I will get new scans about Sept to see the progress.

      over 5 years ago
    • Linda1968's Avatar
      Linda1968

      Keith59 I hope Yervoy is successful for you and me. Question: since being on Yervoy the tumour under my arm has grown again and along with the one one my rib which is probably right now the most painful. My Oncologist says things will get worse before getting better. Keith59 had something similar happens to you, getting worse before better?
      I have the top Oncoligist in my hospital BUT I am her first patient on Yervoy and I want to know lots in case she misses something?? I have trust in her don't get me wrong but wanted to hear from another party too. One last thing is it true that there is a delay before a patient sees results from Yervoy, if yes or no can you share your journey!
      Takr care
      Linda

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Sounds like your doctor is giving good information. Yervoy is a slow acting drug...up to six months before you see any results. Yes, things get worse before they get better. My lymph nodes under my left arm swell and ache at times. The doc said that's a good sign. My doctor is Jeffery Sosman at Vanderbilt Hospital in Tenn. He is one of the best I am told...and what I have read. He is on the team that developed PD1....a clinical trial that shows great results. My big side effects are fatigue and nausea. Hang in there....you can do it. I get my last treatment this Tuesday......then new scans in Sept. Blessings!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I came across this article about melanoma and immunology treatment. I thought it was very interesting, and thought I would share. http://www.int-imm-foundation.com

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Thanks Keith, most information is good information for those of us that are fighting this. Thanks for sharing.

      over 5 years ago
    • CrystalHay's Avatar
      CrystalHay

      Thanks Keith! Very informative! I learn something new every day and I LOVE IT!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    Feeling much better today! Energy slowly returning, and appetite on the return. Gonna spend some time with my daughters and grandchildren today. Hope everyone has a blessed day!

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      That's good to hear, we need some "up days" to go with all the downers!

      over 5 years ago
    • CrystalHay's Avatar
      CrystalHay

      I hope and pray you have had and are still having a wonderful day! So glad to see you are feeling better.

      over 5 years ago
    • Keith59's Avatar
      Keith59

      Thanks GregP_WN and CrystalHay.....a great day!

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    This was the toughest day I have faced since I started treatment. Barely able to get out of bed. Extremely weak, and nauseated. I was able to eat some water melon. My wife made some kind of nutritional shake, and I got half of it down. Any tips on what to eat or drink on days like this?

    4 Comments
    • Keith59's Avatar
      Keith59

      Thanks GregP_WN....I will keep those options in mind.

      over 5 years ago
    • Terri's Avatar
      Terri

      Take care...I hope things improve soon. I hate those days. Sometimes enduring is the best you can do!

      over 5 years ago
    • Terri's Avatar
      Terri

      Oh, try Ensure blended with fruit. It helped me keep albumin levels up.

      over 5 years ago
  • Keith59's Avatar

    Keith59 posted an update

    I hope everyone has a stress free, pain free weekend...God Bless!

    1 Comment
  • Keith59's Avatar

    Keith59 posted an update

    Heading to Vanderbilt today to see a new heart doctor and get a second opinion concerning my afib. I hope everyone has a blessed day!

    3 Comments
    • Keith59's Avatar
      Keith59

      New doc decided to cut back on blood pressure meds...yeah!

      over 5 years ago
    • Terri's Avatar
      Terri

      Sounds like a good Doctor visit!

      over 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      No better place in the world to go than Vandy as far as I'm concerned. That's where I've been for my last dx, had several surgeries there. I think they've saved me a couple of times. How far do you have to drive to get there?

      over 5 years ago