Dad
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Dad

› Forums › General Melanoma Community › Dad

  • Post
    • March 9, 2017 at 11:37 pm
    snow white
    Participant

    I have some good news to report.  My Dad just had a Brain MRI today, the Doctors office called him a few hours later to tell him that he has NO new tumors and that the ones he had are all DEAD!!!!  SO HAPPY!!!

    Dad had his second IPI infusion on February 24th and he has experienced little side effects so far.  Mostly just fatigue and a very small amount of bowel issues the day after (and really flaky skin). I remain cautiously optimistic at this point.  Paul's death shook me pretty hard, it felt so close to home. All i know is this, I am confident that Dad will be here for my daughter wedding in September and that makes me so happy!  Prayers and plosive thoughts to all of you.

    xo Jen

Viewing 10 reply threads
  • Replies
      • March 9, 2017 at 11:50 pm
      jennunicorn
      Participant

      That is awesome news Jen! So happy for you and your dad!

        • March 11, 2017 at 12:41 am
        snow white
        Participant

        Thank you Jenn 🙂

        xo Jen

      • March 9, 2017 at 11:53 pm
      Cindyco
      Participant

      So happy for you Jen!  We are seeing Dr. Hamid tomorrow at noon.  I have a feeling we will be offered the same trial Paul was offered, as the standard immunotherapies are not an option for us at this point.  Hoping we hear good news tomorrow too.

        • March 11, 2017 at 12:41 am
        snow white
        Participant

        Thank you!  Please let us know how it goes with Dr. Hamid,

        xo Jen

      • March 10, 2017 at 12:14 am
      Bubbles
      Participant

      Glad you have some good news!!  Enjoy!!! c

        • March 11, 2017 at 12:43 am
        snow white
        Participant

        Thank you Celeste!!!  I hope you are well.

        xo Jen

      • March 10, 2017 at 2:04 am
      maperny
      Participant

      Great news!  Must have ruled put LMD then?  I know thatcwas a worry for you.

      Maria

        • March 10, 2017 at 2:04 am
        maperny
        Participant

        Ruled out I meant!

      • March 10, 2017 at 2:38 am
      BrianP
      Participant

      Great new Jen.  Happy for you guys.

      • March 10, 2017 at 3:17 am
      Nicklindner
      Participant

      Great news!!  Congrats!!!

      • March 10, 2017 at 5:19 am
      debwray
      Participant

      Brilliant news. My heart was in my mouth as I opened your post as it has been a tough journey so far. No doubt there will be more twists and turns..but I am sure that this outcome is down to your love and diligence seeking out the best options you can find for those you love so  very much and have had to guide and negotiate them to accepting these as the better options.

      Job well done.. Enjoy it and hope the wedding goes with a swing. Got my bBuckinghsm Palace date for dtrs Gold Duke of Edinburgh award ..but ipi nivo not working for me so far… Currently in patient re pain relief and spinal investigations. Hoping against hope that I could be a late responder..but looks like will need a plan c..Hopefully seeing more of the picture today but am scared that time is running ever shorter and being an in patient is not at all good for the spirits ..unless achieving treatment or pain relief….but your news was a tonic…

      Deb

        • March 11, 2017 at 12:40 am
        snow white
        Participant

        Oh Deb.  My heart just aches for you. I wish I dint live across the pond so that I could come visit you and try to lift your spirits.  I can only imagine being an inpatient as many times as you have must really wear on your nerves.  BIG CONGRATS on the Buckingham Palace Gold Duke of Edinburgh award. I hope you are getting some pain relief.  My Dad has been having back pain, but all scans show there is nothing to be concerned about.  I wonder if its because of resting (laying down) more than usual combined with the immunotherapy?  I am praying that you are a late responder and that you can get onto the next thing. quickly.  Please keep the faith, you are doing all that you can and you are still very much ALIVE!!!!  Your contribution on this board is priceless and so appreciated.  Sending you virtual hugs, best wishes and lots of prayers!!!  Keep in touch.

        xo Jen

        • March 12, 2017 at 4:10 am
        debwray
        Participant

        Thanks for the support. Got out on Friday..but not a lot of answers as yet.. They changed painkillers to look to nerve pasin but new regime will need tweaking.. But easier to achieve out of hospital… Onc has not fully ruled out more immunotherapy… But has kicked that to long grass of next scan result…which will either show benefit and we continue nivo only.. Or no benefit at ewhich point he will prob say stop as too many harms.. Not enough benefits. Suspect we may be treading that pathway but will only be sable to open the what next conversation when we arrive..

        Good thing.. Get to see Laura Marling on Sun night which should be good…Got to count my blessings.. Cancer does suck but it teaches me thre importance of all kinds of things..even down to the simple pleasure of going for a wee  in a normal toilet without having to be log rolled on to a bed pan…or how good it is to be home.. In my own bed  with hubby by my side… little things mean a lot..

        Will be the proud Mum for the awards..great to have things to look forward to..

        Really pleased things going well for you and yours… Hugs etc gratefully received.

        Deb

         

        X

        • March 11, 2017 at 1:42 am
        maperny
        Participant

        Thinking of you, Deb

      • March 10, 2017 at 5:55 pm
      cancersnewnormal
      Participant

      My heart took a dive into my guts when I just saw "Dad" in the subject line. WHEW!!! That is FANTASTIC news!!! Thank you for sharing!  : )

        • March 11, 2017 at 12:31 am
        snow white
        Participant

        Awe. Sorry for the scare.  Thanks Niki, we are enjoying this good news.  I hope you are doing well.

        xo Jen

      • March 11, 2017 at 3:21 am
      Maria C
      Participant

      Thrilled to hear Jen!! I've followed your dad's story as I battled with brain mets and craniotomies all last summer. I've been clear for 6 months, my hair's mosly all grown back, and I'm back to work full-time. Miracles happen!! I'm thrilled for you, your dad & your family!

        • March 11, 2017 at 4:12 am
        snow white
        Participant

        Thank you Maria.  So happy to hear that you are well 🙂

      • March 11, 2017 at 4:55 am
      Casitas1
      Participant
      Wonderful!
      • March 11, 2017 at 1:17 pm
      Terrified
      Participant

      So happy. Nice to see success stories.

       

      Judy

Viewing 10 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.