Rough day today

2

Comments

  • msjax
    msjax Member Posts: 20
    Thinking of you!

    Hope the appointment with the new doctor provides some better answers for you ~ much support and will be thinking of you on Tuesday.

  • Cinnamongirl
    Cinnamongirl Member Posts: 199 Member

    Thank you all

    Cancer won this round but I am going to win the fight. FU cancer!! My amazing doctor fast tracked me to THE oncologist for kidney cancer. I meet with him on Tuesday. I am so thankful for the prayers and support. These last few days have been very hard but no one ever said this was going to be easy. One day at a time. 

    Positive thoughts

    I love your attitude. You are going through a lot right now. Sending you strength and perseverance.

    Cin

  • Jeffris1
    Jeffris1 Member Posts: 41
    Svenska1 said:

    Tummy Support

    I need to find a support band for my tummy to use during the healing process.  8 days post op from rt kidney removal.  Any recommendations?   Tired today. I was kind of too upbeat after surgery but today I am crashing.  Think sleep is in order.  Thanks for your respoonses.

    Go to home depot, all their

    Go to home depot, all their people where stomach belts to help prevent hernia. They sell them.

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited June 2018 #25
    My pray is with you Mark, it

    My pray is with you Mark, it is just too much to digest in a day (not easy to read it as well). I wish you the best outcome from your treatment!

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    Hi Mark

    You'll also be in my thoughts.

    Steve.

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    Prayers for you.

    Prayers for you.

  • JoeyZ
    JoeyZ Member Posts: 210 Member

    Thank you all

    Cancer won this round but I am going to win the fight. FU cancer!! My amazing doctor fast tracked me to THE oncologist for kidney cancer. I meet with him on Tuesday. I am so thankful for the prayers and support. These last few days have been very hard but no one ever said this was going to be easy. One day at a time. 

    I have been thinking about

    I have been thinking about you since your post, and you're definitely in my thoughts today. I hope you get some good news for a plan of action. I'm not sure we have the same exact kind of cancer, but mine is pRCC, non clear cell, type 2, grade 3. For what it's worth, they put me on Cabometyx a month after surgery. Will soon be starting the 3rd month of it and in 2 weeks a new scan. I see some people having results with this med. Whatever they decide, you are in good hands, and hope they help you to kick this, and fast. Please keep us posted.

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member
    edited June 2018 #29
    I feel your pain

    Our stories sound very similar. I was diagnosed after an ER visit. Then March 8 I had my left kidney removed. My cancer had reached my renal vein. My surgeon was sure he removed all cancer and my pathology was clear. My pathology showed an agressive cancer. Two months later I ended up in the ER with severe back pain. My scans showed my cancer had spread to my lungs liver spine and groin. My cancer on my spine caused a compression fractue of my lumbar spine. I had an ablation and kyphoplasty of my lumbar spine. I had my first immunotherapy treatment almost 3 weeks ago. No maytma what stay positive and fight. My prayers are with you. 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    Amy_Jo said:

    I feel your pain

    Our stories sound very similar. I was diagnosed after an ER visit. Then March 8 I had my left kidney removed. My cancer had reached my renal vein. My surgeon was sure he removed all cancer and my pathology was clear. My pathology showed an agressive cancer. Two months later I ended up in the ER with severe back pain. My scans showed my cancer had spread to my lungs liver spine and groin. My cancer on my spine caused a compression fractue of my lumbar spine. I had an ablation and kyphoplasty of my lumbar spine. I had my first immunotherapy treatment almost 3 weeks ago. No maytma what stay positive and fight. My prayers are with you. 

    FU Cancer!!!

    Our stories are way too similar ... I am so sorry that you have gone through all of that. Cancer really sucks. I’m hoping for the best news possible tomorrow but I know I am going to have to fight hard to beat this thing. Best of luck to you on your continued fight. I am praying for you and everyone with this horrible disease. 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    Updates ...

    Met with the Head of GU Oncology at Mayo Clinic yesterday.  This cancer is a real **** - aggressive and rare (unclassified with sarcomatoid features - grade 4).  They want to get me started on a dual immunotherapy of yervoy and opdivo but had to have a brain scan, blood work and another CT of my pelvis for staging/markers.  MRI was this morning and got good news - no signs of cancer in my brain!!!  I believe I will be getting my first infusion next week.  The doctors did share that this is not a curative approach but more a palliative approach to try to extend my life and improve quality of life.  This is a new first line approach to treatment and they really didn't have a lot of concrete information to give me.  I did get the very sobering news that people with this type of cancer typically live about a year.  I have decided that I have many more years to my life and I am going to fight like hell.  Keep the prayers, good thoughts and words of encouragement coming.  

  • stub1969
    stub1969 Member Posts: 966 Member
    Averages

    Life is full of averages.  That one year is an average.  As you will notice on this board there are a lot of stage 4 RCC fighters that have lived well beyound the "average" and are plugging along just fine.  I believe you will be one of those folks too.

    All the best--Stub

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Mark

    oh Mark..  I can’t tell you how shocked I am

    i was praying you would get better news

    However as Stub says.. there are folk here for  many years

    its very hard to absorb.. 

    but strength and determination takes you a long way

    prayers for you

    Annie

  • Trucker1
    Trucker1 Member Posts: 82
    No mortal knows how long we have left

    I wish you the best of luck and hope that your treatment helps kick this cancer ****! You have the right attitude! ! We will be thinking of you and praying for you!!!

  • msjax
    msjax Member Posts: 20
    Smart Patients

    Mark,

    There is another cancer support site you might want to check out called Smart Patients -- excellent advice from many others who are currently going through treatment.  Very good information about your type of RCC -- https://www.smartpatients.com/conversations

    You may also want to create an account with Practice Update (free) -- they just released this interview about rare kidney cancers with Ramaprasad Srinivasan MD, Ph

    https://www.practiceupdate.com/content/an-overview-of-rarer-subtypes-of-kidney-cancer/64185/11/10/3

    Also in the future you may want to contact NIH about possible clinical trials -- https://www.cc.nih.gov/recruit/protocols/18_kidney.html --they cover much of the cost when someone participates and also do genetic profiling.

    You are in my thoughts -- take care.

     

  • Texegon
    Texegon Member Posts: 2
    You are in my thoughts! 

    You are in my thoughts! 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    stub1969 said:

    Averages

    Life is full of averages.  That one year is an average.  As you will notice on this board there are a lot of stage 4 RCC fighters that have lived well beyound the "average" and are plugging along just fine.  I believe you will be one of those folks too.

    All the best--Stub

    Thank you

    Thank you Stub. 

  • Allochka
    Allochka Member Posts: 1,060 Member
    Mark, here we have Fox, and

    Mark, here we have Fox, and Donna, and lots of others who were given kind of expiry date long ago. But they are here and living life!

    Fight like hell, yes! Cancer shall not pass!

    All

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member

    Updates ...

    Met with the Head of GU Oncology at Mayo Clinic yesterday.  This cancer is a real **** - aggressive and rare (unclassified with sarcomatoid features - grade 4).  They want to get me started on a dual immunotherapy of yervoy and opdivo but had to have a brain scan, blood work and another CT of my pelvis for staging/markers.  MRI was this morning and got good news - no signs of cancer in my brain!!!  I believe I will be getting my first infusion next week.  The doctors did share that this is not a curative approach but more a palliative approach to try to extend my life and improve quality of life.  This is a new first line approach to treatment and they really didn't have a lot of concrete information to give me.  I did get the very sobering news that people with this type of cancer typically live about a year.  I have decided that I have many more years to my life and I am going to fight like hell.  Keep the prayers, good thoughts and words of encouragement coming.  

    I will fight with you.....

    I was given the same information agressive grade 4. I was given my first infusion of yervoy and opdivo almost 3 weeks ago. The biggest side effects for me were decreased appetite and fatigue. Today I have been feeling really good I've managed to keep up with my little ones and had a good appetite. My oncologist gave the grim info however she said everyone's body responds differently and even though we know there's no cure the growth can be stopped or it could shrink tumors. I have my second treatment Monday I'm hoping my side effects do not increase. I just reached out for a second opinion. I was very impressed with her. She also recommended genetic testing which my previous oncologist never mentioned. She spent almost an hour with me and my husband we felt more informed with her. Stay strong and prepare for battle my friend. I will pray for strength and healing for you. Like the others have said no mortal knows my expiration date. That's between me and God and so far he's put faith and hope in my heart. I hope your treatment goes well. I also had a port placed so my care team can complete infusions and pull blood for labs which has spared me needle sticks. 

  • marosa
    marosa Member Posts: 334 Member
    Mark, my thoughts

    are with you.  Wishing you the best results in your treatment and may you always keep your positive attitude. 

  • Jeffris1
    Jeffris1 Member Posts: 41
    I hear ya

    We just went thru pretty much the same thing. My husband renal cancer showed because of a racing heart, then ct scan showed a tumor on his rib, which brought us to his kidney, which was removed the other day. Have no idea where we are headed next, but you and my husband are on the same path. So the fight begins. Positive  energy and good drugs.