Depressed. Nothing working, progression marches on

MattInVa
MattInVa Member Posts: 50
in Kidney Cancer #1

I havent been or posted in a long while now.

I was pulled off opdivo after 2 mos because of signifigant progression, including 3cm tumors in my thyroid lymphnodes, additional lung mets, liver etc.

I had progressed on votrient after only 6 mos.

I have been to the molecular tumor boards where they sample the tumor DNA for potential treatments that target specific mutations. I guess all of mine are untargetable, everyone just shrugs their shoulders and says Clinical Trials now.

I have several clinical trials I can try but at this point I am beginning to feel its all guess work.

I hate it .....I had several new tumors grow from nothing to 3cm in 8 weeks.

Just venting, I was optomistic for opdivo, it didn't even keep it stable a few weeks.

I am 46 and afraid of not seeing 47 now. All my hope and optimism is failing.

 

 

 

 

 

 

 

Comments

  • stub1969
    stub1969 Member Posts: 978 Member
    edited August 2016 #2
    Sucks

    Hey, Matt.  I'm fairly new to this as I was diagnosed a few weeks ago.  So, I can't offer you much other than the opportunity to read your posts and send you positive thoughts and know that I'm praying for you.  I've spent a lot of time reading the different topics from people poring out their heart and soul hoping for something to stop this cancer.  I have to tell you from about 2011-2012  the opportunities for new meds really took off.  I've seen numerious times on this board new trials that lead to good outcomes.  I guess I'm saying, in short, don't give up hope.  Keep searching and fighting.

    Stub

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited August 2016 #3
    Hang on in theremate!

    Sounds like your having a rough ride.

    There a whole bunch of preclinical trials that drugs go through before they attempt the stuff on people.

    Its far from guesswork: It's hope

    I've grown a new lump on Opdivo so I'm off to be nuked on the morrow.

    I'll be thinking of you when they're zapping me. Try not to give up. The Godly will be praying for you.

  • hardo718
    hardo718 Member Posts: 853 Member
    edited August 2016 #4
    Don't give up

    I, as well as many others, will be praying for you and that they offer you something that works.  Please keep us posted.

    Donna~

  • Allochka
    Allochka Member Posts: 1,072 Member
    #5
    Dear Matt,

    Dear Matt,

    please, please don't give up. There are so many clinical trials that might work for you. Fight this damn thing!

  • APny
    APny Member Posts: 1,995 Member
    edited August 2016 #6
    I'm so sorry and your

    I'm so sorry and your depression and frustration is completely understandable. But this disease is so damned unpredictable, and fortunately it's unpredictable even for the positive turns. So I agree with everyone; don't give up and keep trying whatever they throw at you. I'll be keeping you in my thoughts with fingers crossed that one of those clinical trials will be perfect for you.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    edited August 2016 #7
    Hi Matt,

    Hi Matt,

    I am keeping you in my thoughts and prayers. Please try not to feel discouraged. There are many options out there! Take care and please keep us posted!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    discouraged

    is the word. Not depressed. I may know how you feel. My latest nivo failure has me still blown away. Take some time and regroup. Matt, I also am finding more frequent failure with treatments. Therefore staying upbeat now is extra important.

  • LauraM3
    LauraM3 Member Posts: 27
    edited August 2016 #9
    Hugs.  Hang in there.  I rely

    Hugs.  Hang in there.  I rely a lot on my faith in God to help me.  Stay positive.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #10
    Oh sweet Matt, your post

    Oh sweet Matt, your post brought me to tears! Your situation is real, your emotions raw and I say, you can FEEL whatever you need to in order to ANY negativity OUT of you~ None of us can know what you are experiencing.

    It breaks my heart that you have had such a rough road of late.

    BUT.. try really hard to just focus on the NOW, today~!

    When we project into the future and all the "what ifs"

    we'd go crazy. You cannot afford to use UP your energy on the negativity.

    Because you were courageous enough to be honest with us, know that now I am forever connected to you~

    Sending you healing vibes, and loving thoughts.

    The warmest hug, Jan

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited August 2016 #11
    foxhd said:

    discouraged

    is the word. Not depressed. I may know how you feel. My latest nivo failure has me still blown away. Take some time and regroup. Matt, I also am finding more frequent failure with treatments. Therefore staying upbeat now is extra important.

    So sorry to  hear this news,

    So sorry to  hear this news, Fox!

    Know that you always have a piece of my heart... in ALL WAYS~

    You are not alone my dear man, I am with you all the way!

    Hugs, Jan

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #12
    Hang in there

    Matt, it does sound as if your journey is pretty discouraging right now. Hang in there.  We're here, pulling for you, praying, thinking good thoughts, holding you in our hearts. 

    Vent away, keep us posted, the whole bit.  We care. 

  • cheatinlil
    cheatinlil Member Posts: 197
    #13
    MattInVa,

    MattInVa,

    I'm so sorry you are going through this.  Get some rest.  While you are resting you can be sure we are fighting the battle for you through our prayers and tears.  Scream, cry and rest then when you have it out of your system, get up and fight with us.  You are not alone in this battle!

  • MattInVa
    MattInVa Member Posts: 50
    edited August 2016 #14
    Thanks for all the kind words

    Thanks for all the kind words and encouragement.

    I had to get it all out of my system. The let down from Opdivio and the amount of progression in 2 months knocked me back a lot.

    On a positive note...I feel great....physically...I travel all the time. 2 weeks in the Austrian/Bavarian Alps, and I am in Ireland currently...I was squeezing these trips in between Opdivo infusions.....Fly out same day as my infusion return the day before the next round.

    I have been living and I am not done yet. I have a good team of people assisting me, My onc, Tumor Board, cancer support staff and such helping me do the leg work on research for a suitable trial.

    I do feel a dilema though....I feel good, I dont't feel ill, Im not tired, I gained weight, like to eat again. I feel as good as I did before I knew about My cancer (Diagnosed Aug 27th 2015).

    I want to continue to feel good and alive. My fear is that the rigors of some of these trials will rob me of time, time which I can't get back if they fail and even if I get some time, its time that won't be pleasent, at least for the trials they are suggesting, most of which are radical  Phase I or II's.

    I have a few more days before I return to reality from my latest foreign escape. I dread the decisions I must make or not make I guess.

    I suppose that if there had been more sucess with other Meds or Positive reuslts from the tumor boards analysis that I would be more optomistic regarding trials.

    I was supposed to be leaving for Rome Sat and taking a drive through Italy to France, if Opdivo had just given me a month.

    I did roll up myseleves today and hit the keyboard hard, sending emails and researching trials...ALL day as a matter of fact. Its 3:15am now and I am still reading writing emails.

     

    I am rambling as my thoughts do a lot now. So I will say this again, Thank you for allowing me to vent it out here, the hope, fear, anger, love and reality all crash together sometimes.

     

    Matt

  • stub1969
    stub1969 Member Posts: 978 Member
    edited August 2016 #15
    Approach

    Thank you for the post, Matt.  I've been thinking about you. 

    We all approach our life differently and we live it differently.  Having worked in K-12 education for 25 + years, I see this reality everyday as kids and families make choices.  During this time working with kids, I've been the cheerleader pushing our kids to dream big and live their life rather than live a life of survival.  As much as I push, facilitate, even cheer for them, ultimately it is up to them to decide which way to turn in the many crossroads that they face.  You, my friend, are at a crossroad.  I'm sure you will choose a path that is best for you and your loved ones....ultimately that is what this is about.  I wish you well in your journeys.

    Stub 

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #16
    MattInVa said:

    Thanks for all the kind words

    Thanks for all the kind words and encouragement.

    I had to get it all out of my system. The let down from Opdivio and the amount of progression in 2 months knocked me back a lot.

    On a positive note...I feel great....physically...I travel all the time. 2 weeks in the Austrian/Bavarian Alps, and I am in Ireland currently...I was squeezing these trips in between Opdivo infusions.....Fly out same day as my infusion return the day before the next round.

    I have been living and I am not done yet. I have a good team of people assisting me, My onc, Tumor Board, cancer support staff and such helping me do the leg work on research for a suitable trial.

    I do feel a dilema though....I feel good, I dont't feel ill, Im not tired, I gained weight, like to eat again. I feel as good as I did before I knew about My cancer (Diagnosed Aug 27th 2015).

    I want to continue to feel good and alive. My fear is that the rigors of some of these trials will rob me of time, time which I can't get back if they fail and even if I get some time, its time that won't be pleasent, at least for the trials they are suggesting, most of which are radical  Phase I or II's.

    I have a few more days before I return to reality from my latest foreign escape. I dread the decisions I must make or not make I guess.

    I suppose that if there had been more sucess with other Meds or Positive reuslts from the tumor boards analysis that I would be more optomistic regarding trials.

    I was supposed to be leaving for Rome Sat and taking a drive through Italy to France, if Opdivo had just given me a month.

    I did roll up myseleves today and hit the keyboard hard, sending emails and researching trials...ALL day as a matter of fact. Its 3:15am now and I am still reading writing emails.

     

    I am rambling as my thoughts do a lot now. So I will say this again, Thank you for allowing me to vent it out here, the hope, fear, anger, love and reality all crash together sometimes.

     

    Matt

    Dilemma

    "I do feel a dilema though....I feel good, I dont't feel ill, Im not tired, I gained weight, like to eat again. I feel as good as I did before I knew about My cancer (Diagnosed Aug 27th 2015).

    I want to continue to feel good and alive. My fear is that the rigors of some of these trials will rob me of time, "

    Thats the bugger tho' isnt it? We can put up with the SE's until they stop: then we dont want them back again. I'm carrying on with Nivo even though one of my mets has started growing disturbingly quickly, it seemed to be working and I loved the lack of SE's My docs want to pair it with very aggressive radiation. I'm trying not to hope for success, because I dont know how I would cope with the disappointment.  I'm going to try and take it a day at a time, tho' it seems that it was easier when I was a cancer virgin.

    Good luck. Keep in touch

     

  • rhominator
    rhominator Member Posts: 233 Member
    edited August 2016 #17
    Dang

    I feel for you Matt. Thanks for taking the time to update us with your thoughts and feelings.

  • marosa
    marosa Member Posts: 334 Member
    #18
    Keeping you in my thoughts

    Keeping you in my thoughts and hoping things take a turn in a positive way in your health.  I feel so out of words and aware of english being foreing to me when trying to convey feelings in words. My heart goes out to you Matt

  • Teashea
    Teashea Member Posts: 89 Member
    #19
    Wonderful

    How wonderful you feel well enough to do so much traveling. I believe that is why you still feel so well. One day at a time is all most of us can do. Prayers for you Matt. God bless you

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