Can't stop crying tonight....

Dan6652
Dan6652 Member Posts: 25

I just came home ffrom visiting my brother. He is currently in a rehab hospital after spine surgery to alleviate pain from a T-11 spinal met and to stabilize his spine for radiation. Tonight he felt ike the excruciating pain in his back and side beforevthe surgery was back. He was so down and heartbroken tonight it took everything in my power to keep a stiff upper lip so he wouldn't see more breakdown. This nightmare had been going on since mid- september. First they removed the kidney and pain was there and then they did the spinE surgery. We are 2 months out and he still hasn't had any treatment. HEd's getting his staples out tomorrow and then seeing oncologist, pain management physician and  radiologist about when they plan to start targeted therapy for the reminant of the spinal tumor. His spirits have been pretty good up until this point but tonight is the most depressed I've ever seen him. I'm losing All hope in science snd prayer tonight. He's had nothing but obstacles and we are only 2 months into this battle. Im not sure how he can get better if treatment keeps getting delayed. Oncologist actuallyvsaid he might be a good candidate for Il 2 in the future but I can't imagine having hope in that if we can't even get past this stage.  I'm sitting here listening to my 86 year old mother cry herself to sleep while I'm crying typing this. Sure feels like the lights have gone out in our lives. Thanks for listening.

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Comments

  • JoanneNH
    JoanneNH Member Posts: 115
    edited November 2016 #2
    I am so sorry for your

    I am so sorry for your brother's pain and your family's pain.   I have no suggestions, but sending hugs to you all.  I bothers me so much to hear doctors say that patients should not suffer with pain, yet they do.

  • Footstomper
    Footstomper Member Posts: 1,237
    edited November 2016 #3
    Hang on in there

    You called this a nightmare and it is, but like all nightmares it will come to an end. The start of treatment is often pretty tough  and its great that your brother has a loving family to support him.

    I think crying is a perfectly reasonable reaction to this situation.

    Good luck to you all.

  • Abunai
    Abunai Member Posts: 173
    edited November 2016 #4
    The process is too slow.

    It's scary.

    I can sympathize with the feeling of delay. It certainly doesn't feel like anyone else has the same sense of urgency as me and my wife to get treatment underway and stop/reverse this crap. I can tell you that radiation therapy was a big nothing-burger. No side effects for me.

    I can only say that my hope comes from the support of my family, friends, and people here. I feel like I have a lot more in me than the stats on the Internet, so I'm ignoring those. I do push my doctors when I think they are moving too slowly, so does my wife.

    I wish you, your brother, and your family the best.

  • Dan6652
    Dan6652 Member Posts: 25
    edited November 2016 #5

    Hang on in there

    You called this a nightmare and it is, but like all nightmares it will come to an end. The start of treatment is often pretty tough  and its great that your brother has a loving family to support him.

    I think crying is a perfectly reasonable reaction to this situation.

    Good luck to you all.

    Thank You

    Footstomper,

    Thank you so much for taking the time to respond to my situation.

    I know you have enough going on yourself. Please know I am praying for your improved health in the months to come.

    You've been a true inspiration to me and everyone o this board.

    Please hang in there--better days are ahead.

    Thank you again.

  • Dan6652
    Dan6652 Member Posts: 25
    Abunai said:

    The process is too slow.

    It's scary.

    I can sympathize with the feeling of delay. It certainly doesn't feel like anyone else has the same sense of urgency as me and my wife to get treatment underway and stop/reverse this crap. I can tell you that radiation therapy was a big nothing-burger. No side effects for me.

    I can only say that my hope comes from the support of my family, friends, and people here. I feel like I have a lot more in me than the stats on the Internet, so I'm ignoring those. I do push my doctors when I think they are moving too slowly, so does my wife.

    I wish you, your brother, and your family the best.

    Abunai

    Thank you for your response.

    Yes, it's very scary. I've never been so scared in my life. The diagnosis is bad enough but when you are fighting daily pain it makes a bad situation even worse. Some days I walk around in a complete fog barely able to function. I can't imagine how he feels. Your fine one day and sicker than a dog the next. How long did it take you to recover from the spinal surgery? He is going into his second week of rehab. He is improved but still his blood  pressure tanks at times and he is very fatigued. I'm wondering if you felt the same way? I assume you still take medications for the pain from your spinal met? How well is the pain controlled.?Are you able to do your normal daily activities or does it significantly impact your daily life? I think if he could get some quality of life back his mental state would significantly improve. He does see pain management doc but they have struggled in finding a happy medium for him. I'm wondering if a palliative care doctor would be better? I'm sorry for all the questions but I'm trying to find some answers to all this madness. I  just wish I could make this all go away for him and the rest of the people on this board. I HATE CANCER! I'm so sick of it sucking all the joy out of people's lives.

    Please take care and keep us posted on your progress.

    I wish you the best of luck with your new treatment.

     

     

     

  • Teashea
    Teashea Member Posts: 89
    edited November 2016 #7
    Hi Dan

    God bless you and your family during this very hard time. What a blessing to have his family with him and caring so much. Sometimes it feels like life will not get better but it will.

  • Abunai
    Abunai Member Posts: 173
    edited November 2016 #8
    Dan6652 said:

    Abunai

    Thank you for your response.

    Yes, it's very scary. I've never been so scared in my life. The diagnosis is bad enough but when you are fighting daily pain it makes a bad situation even worse. Some days I walk around in a complete fog barely able to function. I can't imagine how he feels. Your fine one day and sicker than a dog the next. How long did it take you to recover from the spinal surgery? He is going into his second week of rehab. He is improved but still his blood  pressure tanks at times and he is very fatigued. I'm wondering if you felt the same way? I assume you still take medications for the pain from your spinal met? How well is the pain controlled.?Are you able to do your normal daily activities or does it significantly impact your daily life? I think if he could get some quality of life back his mental state would significantly improve. He does see pain management doc but they have struggled in finding a happy medium for him. I'm wondering if a palliative care doctor would be better? I'm sorry for all the questions but I'm trying to find some answers to all this madness. I  just wish I could make this all go away for him and the rest of the people on this board. I HATE CANCER! I'm so sick of it sucking all the joy out of people's lives.

    Please take care and keep us posted on your progress.

    I wish you the best of luck with your new treatment.

     

     

     

    Dan,

    I was in the ICU for 6 days, then they moved me to physical rehabilitation. By the time I had my surgery though, my spinal cord had been compressed to the point where I had lost total control of my left leg, a lot of function in my right leg, was retaining urine (couldn't pee) and lost a lot of sensation below the waist. I spent another 2 weeks in physical rehabilition. I was released on Oct. 21st able to walk with a walker. I'm on forearm crutches now, able to do small distances (20-50 feet) unassisted.

    I've not had blood pressure issues. I am still taking Percoset, 7.5mg, X2 every 4 hours as needed for tissue pain (nociceptive?) and Gabapentin, 300mg, X3 per day for nerve (neuropathic) pain. My mood and outlook do, definitely follow my pain, but both are pretty well controlled with these medications.

    I run a haunted house, so right now is my busy season and, even though I can't do much of anything physical from my forearm crutches and lazy boy chair, I am keeping busy doing the admin work and doing stuff I love. I'm sure that helps.

    It does hit me, a couple times a day, "$h!+, I have cancer.". But I've got a lot on my plate, a lot I want to still do, so I research what is the best way to turn my "fatal disease" into a "chronic disease" and live.

    I have no problem with the questions, whatsoever. Keep on asking, as it sounds like our cases have quite a bit in common.

    My best to you. I can't imagine what my wife, who is playing the role of my rock, like you are playing for your brother, is/has gone through. A lot of added stress, work, worry, etc.

    Give my best to your brother, too. You all hang in there.

  • hardo718
    hardo718 Member Posts: 853
    I'm sorry Dan

    It is so hard to watch a loved one suffer, personally went thru this with my youngest brother (lung ca) and my dear uncle (oral ca).  If I could have reached in to take their pain, I would gladly have done so, as I'm sure you would.  Unfortunately, we are powerless in the struggle.  That lack of control is what would drive me to tears and sometimes near the brink of insanity. (But I'm a self-admitted control freak, hard as I try to keep it in check)

    Try not to lose your faith that better days lie ahead.

    I will be praying for all of you,

    Donna~

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    Sorry to hear

    So sorry to hear what your brother and you as family are going through. Pain like that is miserable and - as others have said - crying is a totally reasonable response. 

    Prayers and caring thoughts for your brother, you, your mom, and the rest of your family. Hugs to you all. 

    Jerzy

  • foxhd
    foxhd Member Posts: 3,181
    All I can add

    is just hang on. I promise that you can handle this. We all have.

  • Dan6652
    Dan6652 Member Posts: 25
    Dan6652

    My brother had an appt with the oncologist today. Dr. felt IL-2 was not a good option at the moment since he is so weak from the kidney surgery and subsequent spine surgery. This was a little disappointing to me since although slim it is his only chance for complete remission. Dr said he can always try IL-2 when he is stronger but i thought it was always better as a first line treatment. Dr. also said IL-2 will most likely be going by the wayside in the future as other treatments become available. The plan at the moment is 10 days radiation for the reminants of the spinal met and starting Votrient  he is currently very thin from the 2 surgeries. I can't wait until he gains weight anstates back to his daily activitiways Fingers crossed. Did anyone do IL-2 after targeted therapies? Also, what is PD-1 and is it still in clinical trials?

  • Dan6652
    Dan6652 Member Posts: 25
    edited November 2016 #13
    foxhd said:

    All I can add

    is just hang on. I promise that you can handle this. We all have.

    Thank You

    Thank you. You are an inspiration. Stay well!

  • Dan6652
    Dan6652 Member Posts: 25
    Teashea said:

    Hi Dan

    God bless you and your family during this very hard time. What a blessing to have his family with him and caring so much. Sometimes it feels like life will not get better but it will.

    Thank you

    For the kind word!

    Best wishes for good health!

  • Dan6652
    Dan6652 Member Posts: 25
    hardo718 said:

    I'm sorry Dan

    It is so hard to watch a loved one suffer, personally went thru this with my youngest brother (lung ca) and my dear uncle (oral ca).  If I could have reached in to take their pain, I would gladly have done so, as I'm sure you would.  Unfortunately, we are powerless in the struggle.  That lack of control is what would drive me to tears and sometimes near the brink of insanity. (But I'm a self-admitted control freak, hard as I try to keep it in check)

    Try not to lose your faith that better days lie ahead.

    I will be praying for all of you,

    Donna~

    Thank you

    For your support and prayers.

  • Dan6652
    Dan6652 Member Posts: 25
    edited November 2016 #16
    JerzyGrrl said:

    Sorry to hear

    So sorry to hear what your brother and you as family are going through. Pain like that is miserable and - as others have said - crying is a totally reasonable response. 

    Prayers and caring thoughts for your brother, you, your mom, and the rest of your family. Hugs to you all. 

    Jerzy

    Thank You!

    For your suport. Best of luck to you!

  • Dan6652
    Dan6652 Member Posts: 25
    Abunai said:

    Dan,

    I was in the ICU for 6 days, then they moved me to physical rehabilitation. By the time I had my surgery though, my spinal cord had been compressed to the point where I had lost total control of my left leg, a lot of function in my right leg, was retaining urine (couldn't pee) and lost a lot of sensation below the waist. I spent another 2 weeks in physical rehabilition. I was released on Oct. 21st able to walk with a walker. I'm on forearm crutches now, able to do small distances (20-50 feet) unassisted.

    I've not had blood pressure issues. I am still taking Percoset, 7.5mg, X2 every 4 hours as needed for tissue pain (nociceptive?) and Gabapentin, 300mg, X3 per day for nerve (neuropathic) pain. My mood and outlook do, definitely follow my pain, but both are pretty well controlled with these medications.

    I run a haunted house, so right now is my busy season and, even though I can't do much of anything physical from my forearm crutches and lazy boy chair, I am keeping busy doing the admin work and doing stuff I love. I'm sure that helps.

    It does hit me, a couple times a day, "$h!+, I have cancer.". But I've got a lot on my plate, a lot I want to still do, so I research what is the best way to turn my "fatal disease" into a "chronic disease" and live.

    I have no problem with the questions, whatsoever. Keep on asking, as it sounds like our cases have quite a bit in common.

    My best to you. I can't imagine what my wife, who is playing the role of my rock, like you are playing for your brother, is/has gone through. A lot of added stress, work, worry, etc.

    Give my best to your brother, too. You all hang in there.

    Same Plan

    Thank you. My brother will be getting his radiation next week and also starting Votrient. Good luck with your treatment.

  • angec
    angec Member Posts: 924
    edited November 2016 #18
    Hang in there!  When cancer

    Hang in there!  When cancer is discovered it is devastating. But, there are a lot of new meds on the market that can do wonders.  Lots of great examples on these boards of those here past five years.  They have now  found ways to treat cancer as a chronic disease.  Take one day at a time and continue  being positive.  It is always harder in the beginning.  Once he heals they will do radiation  which will help with pain and Dimish the remaining tumor. Then he can start targeted treatment if he needs it.  If the nodules are small, it is good.  Try not to read too much on the net, outdated information can get you more worried. If you haven't already, sign up at smartpatients.com.  They are very knowledgeable and up to speed on new treatment.  Hugs to all and mom! He will do fine!

  • angec
    angec Member Posts: 924
    Dan6652 said:

    Dan6652

    My brother had an appt with the oncologist today. Dr. felt IL-2 was not a good option at the moment since he is so weak from the kidney surgery and subsequent spine surgery. This was a little disappointing to me since although slim it is his only chance for complete remission. Dr said he can always try IL-2 when he is stronger but i thought it was always better as a first line treatment. Dr. also said IL-2 will most likely be going by the wayside in the future as other treatments become available. The plan at the moment is 10 days radiation for the reminants of the spinal met and starting Votrient  he is currently very thin from the 2 surgeries. I can't wait until he gains weight anstates back to his daily activitiways Fingers crossed. Did anyone do IL-2 after targeted therapies? Also, what is PD-1 and is it still in clinical trials?

    Before he goes to Votrient,

    Before he goes to Votrient, it might be good to start with opdivo.  Votrient is a great drug, but i would  start with opdiva since it is an immuntherapy and side affects are minimal.  He will lose weight on Votrient for sure.  See about Opdivo which is an iv, not chemo, which he takes every two or three weeks.  Thete are others here on that.  Push for it.  Not  sure if it spproved for rcc but i think it is. If not get it off label. 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited November 2016 #20
    Dan,so sorry  your family is

    Dan,so sorry  your family is going through all this at this time. No one wants to see a loved one suffer and go through so much.  Let your brother know that we, complete strangers, are there for him and understand best we can~ok?

    And just a suggestion: write a journal on each and every day, week or so and read it back to him at times so he can see what he already made it through, starting with each of those surgeries. Sometimes you have to look back to see you made it farther than you feel.

    But I think YOU, Dan, are an amazing brother!!

    Love can heal more than the heart!

    Hugs, Jan

  • pamstayner
    pamstayner Member Posts: 111
    edited November 2016 #21
    It takes time...

    Your brother will improve.. he had two huge surgeries and his body needs time to recover from the rude invasions.

    PD-1 is "programed death-1" I beleive.   Bristol Myers Squib has invented Opvido (nivolumab) and since November 2015 it is approved for RCC. It is an imunotherapy drug and many trials are still ongoing with many drug companies to develope the PD-1 route to cure cancers.  PDL-1 is the other half of a puzzle of  pathways that are being tackled the same way.

    I am sure that IL-2 can be given even after 1st line targeted therapies... so Votrient can be done first, and later IL-2.  Perhaps those who are more experienced in stating information about those two questions will chime in.

    Time will help your brother, and you too until he gets stronger... my prayers will include you both.

    Pam