Rough day today

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Comments

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #42
    Sending prayers your way.

    Sending prayers your way. Keep on being positive.

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #43
    Jeffris1 said:

    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.

    Stay strong

    My heart sinks every time I read about a new person joining this awful club. This journey is just beginning and I know exactly how you feel. Try to stay positive and do your best to trust the healthcare providers. Of course do your own research and advocate for your husband when needed. I pray for strength, comfort and healing. 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #44
    Canadian Sandy said:

    Sending prayers your way.

    Sending prayers your way. Keep on being positive.

    Thank you

    one day at a time 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #45
    marosa said:

    Mark, my thoughts

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

    Thank you

    I feel very optimistic about treatment. 

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    #46
    Allochka said:

    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

    Thank you

    i love the LOTR reference (intentional or not). i Am going to help raise the averages. 

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #47
    Praying for you Mark

    - as you head into whatever this week brings.  I take heart from your positive attitude and optimism.  Take care -

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    #48
    msjax said:

    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, PhD 

    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.

     

    Totally agree that you should

    Totally agree that you should contact NIH about your case, they might be interested to your case as you are having a rare subtype and very young age.

    Also, there are cases of long term complete responders with immunotherapy, and questions like CR = Cure are being asked lately. There will always be new therapy becoming available, so stay strong.

    Also, if you use twitter, this group also provide alot of updates than Google does :)

    https://twitter.com/IKCCorg

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #49
    So glad to hear they are

    So glad to hear they are taking good care of you. We are here with you!! Stay up and positive. All the best to you xoxo

  • Positive_Mental_Attitude
    Positive_Mental_Attitude Member Posts: 454
    #50
    MarkDavid18 said:

    Thank you

    one day at a time 

    Mark, keep fighting the fight

    Mark, keep fighting the fight.  In the words of Jimmy Valvano--Don't give up, don't ever give up.  Hoping for the best for you.

  • NewDay
    NewDay Member Posts: 272
    edited June 2018 #51
    Please find an RCC expert if possible.

    Hi Mark,

    Where are you being treated.  In your circumstances, it is critical that you see an RCC expert.

    I also have unclassified RCC, but not sarcomotoid.  I highly recommend that you contact NIH because they are experts in hereditary RCC.  RCC in patients your age often is hereditary and NIH would perform genetic testing.  They would also perform a pathology to confirm that it is unclassified.  It can be important to be sure of the correct subtype because it can influence treatment decisions.  I have had my pathology done at 3 institutions.  One disagreed with the other two, but I’m inclined to trust the NIH report because they are about as expert as you can get.

    Unfortunately with yours being so aggressive you really need to start treatment ASAP rather than waiting for second opinions.

    Unclassified RCC normally does not respond to the older drugs and I was given a poor prognosis 4 years ago but I’m still here.  The sarcomotoid feature does make yours even more aggressive, but do not lose hope.  Because clinical trials rarely include unclassified RCC patients, there really is no way of predicting how you may respond to any drug.

    If you decide to contact NIH, you can contact Debbie Nielsen at 301-451-4093.

    I’ll be praying for you.  Keep us posted and ask any questions or just come here to vent.

    I also recommend that you join SmartPatients.com.  CSN is great for support, but SP is almost all Stage IV patients and there is a wealth of information there.

    Kathy

     

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    #52
    Keeping you

    In my thoughts and prayers Mark

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #53
    Me, too, Mark.....I have been

    Me, too, Mark.....I have been wondering about you A LOT and I sure hope you're doing ok. Please get back to us as you can, we care so much.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #54
    I am so so sorry to hear this

    I am so so sorry to hear this Mark. I am glad they seem to be on top of things and are taking great care of you. One step at a time love and still enjoy every interaction. Every smile. Every laugh. We are definitely here for you and with you xoxo.

  • MudMan
    MudMan Member Posts: 23
    edited August 2018 #55
    Prayers

    Prayers for you Mark and may God grant you strength to enjoy everyday one at a time.

  • APny
    APny Member Posts: 1,995 Member
    #56
    I don't believe in expiration

    I don't believe in expiration dates. And so many new approaches are discovered every day that the old "averages" just don't really apply today. My thoughts are with you, Mark!

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