Running out of options

steveandnat
steveandnat Member Posts: 886
in Colorectal Cancer #1

Well I knew this day would be here some day but never thought reality would be so blunt. I have scan results today and to my suspect ions my onc said Styrvaga, chemo pill I've been taking since January were nno longer being effective. I've'twas orinally dx with stage four colon rectal with meta size to liver and later lungs. I've been fighting as hard as I know how. Recently I've have to get blood a lot and am skin and bones. My onc is going to try a Mitomcin treatment this Thursday. Has anyone had it? Iknow there are other chemos for colon rectrum in the works and will try to hangOno as long as possible. I'm in the hospital tonight getting 4units of blood. Please pray for all of us in this cancer world. My scans showed this time tumors in liver and lungs have grown anew new ones are present.  I'm really worried now. I pray for more time but we never know. Jeff

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    You have my prayers Jeff. 

    You have my prayers Jeff. 

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    #3
    prayers

    Prayers to you and your family.  Will keep you in my prayers.

     

    Debbie

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    #4
    Luckygirl2 said:

    prayers

    Prayers to you and your family.  Will keep you in my prayers.

     

    Debbie

     
    Jeff,
    My prayers and heart

     

    Jeff,

    My prayers and heart are with you as you look for more options. This disease certainly doesn't play fair.  

    You have an incredibly resilient spirit and we are all hoping with you. Hang in, my friend.

     

    Cathleen Mary

  • thingy45
    thingy45 Member Posts: 632
    #5
    Cathleen Mary said:

     
    Jeff,
    My prayers and heart

     

    Jeff,

    My prayers and heart are with you as you look for more options. This disease certainly doesn't play fair.  

    You have an incredibly resilient spirit and we are all hoping with you. Hang in, my friend.

     

    Cathleen Mary

    Prayers

    You have my prayers Jeff, fighting and hope is all we have, one day at a time, 

    hugs Marjan 

  • thxmiker
    thxmiker Member Posts: 1,278
    #6
    We are sending our thoughts

    We are sending our thoughts and prayers from the AZ.   We all are going to have this battle in front of us. 

     

    Best Always,  mike

  • annalexandria
    annalexandria Member Posts: 2,571
    #7
    Sending strength and love your way, Jeff.

    This disease is just so unfair.  I wish that I could wave a magic wand and make things better for all of us.  I hope the new tx will be effective for you.  Hugs~AA

  • wolfen
    wolfen Member Posts: 1,324
    #8
    annalexandria said:

    Sending strength and love your way, Jeff.

    This disease is just so unfair.  I wish that I could wave a magic wand and make things better for all of us.  I hope the new tx will be effective for you.  Hugs~AA

    Will Be Thinking Of You, Jeff

    As you fight on against this horrible beast. Hoping whatever the doc comes up with next will be "the one".

    Luv,

    Wolfen

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #9
    Very Sorry, Jeff

    I know you've had a terrible time with all that you've gone through, Jeff. 

    Very upsetting news to hear of new areas to watch...of course, it makes you uneasy, it's always the not knowing that's doing it to us...it wreaks havoc with our insides. 

    Wishing strength for you to keep up the fight...

    The entire community is pulling for you:)

  • Miss Cindy L
    Miss Cindy L Member Posts: 34
    #10
    My thoughts and prayers and

    My thoughts and prayers and positive energy are with you my friend.

  • AnnLouise
    AnnLouise Member Posts: 276
    #11
    Jeff......

    Sending positive thoughts to you and your family....your strength is inspiring. 

    Wishing and hoping for more options.......~ Ann

  • tachilders
    tachilders Member Posts: 313
    #12
    Heartbreaking post.  I will

    Heartbreaking post.  I will keep you in my thoughts and hope that they find something that works for you.  I know that one day I will most likely be in the same position you are in now, so it really affects me when I read posts like this. 

    Tedd

  • janderson1964
    janderson1964 Member Posts: 2,215
    #13
    I am really sorry to read

    I am really sorry to read this Jeff. I will keep you in my thoughts and prayers

  • stephz620
    stephz620 Member Posts: 2
    #14
    Have you considered some

    Have you considered some non-surgical non chemo options to reduce your tumor burden? What about less conventional chemo regimes, such as ones that utilize gemzar or even a clinical trial. Temozolomide seems to have a better effect on refractory mCRC than mitomycin c. Academic litterature tends to consider mitomycin no better than best supportive care. Maybe you could get an indepth tumor profile done at some place like CARis to see if your specific tumors have rarer histological characteristics and would respond to unconventional chemos.

    Temozolomide link:

    http://jco.ascopubs.org/content/29/10/e262

     Mitomicyn C:

    http://www.ncbi.nlm.nih.gov/pubmed/22330318

  • karguy
    karguy Member Posts: 1,020
    #15
    I'm sorry

    I'm sorry to hear the bad news,I hope the new treatments work.I will keep you in my prayers.

  • barbebarb
    barbebarb Member Posts: 464
    #16
    karguy said:

    I'm sorry

    I'm sorry to hear the bad news,I hope the new treatments work.I will keep you in my prayers.

    I am sorry to hear this

    Dear Jeff:

    I am so sorry to hear this report. I hope you can gain strength and there is another option for you.

    We never know how this disease will hit us or give us a break. I scan in August and dread it.

    My liver tumor progressed after 4 cycles of folfiri and now I have had Sirtex radiation put in my liver tumors.

    Can you ask about this treatment - it is so much easier than chemo and being used more frequently.

    I have one left lung nodule that may be radiated if it grows. It's all so trying on us.

    I pray for our group here, yourself and others in my support group.

    You have always been so supportive of others - Barb

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    #17
    jeff

    i had mitomycin, it worked really well in combo with  avastin injected straight into the liver using tace. 

    almost all the colorectals going to hallwang clinic are tested for mitomycin, its a pretty effective cheap chemo.

    do it in an ipt setting if you canot do tace in the usa.

    goodluck, i still suggest exercise as the single largest vegf inhitibitor via hif pathway. 

    just do 60 pushups, oygenate your body, it stops the aggressiveness of the the tumours per my reseach.

    pm me anytime.

    hugs,

    pete

  • renw
    renw Member Posts: 282
    #18
    If you are willing to walk on

    If you are willing to walk on the wild side there are other options:

     

    Dichloroacetate

    2-deoxy-d-glucose

    3-bromo-peruvate

    methyl jasmonate

     

    just to name a few.

  • Eltina21
    Eltina21 Member Posts: 173
    #19
    Prayers

    My prayers are on the way.

  • steveandnat
    steveandnat Member Posts: 886
    #20
    Thanks for feedback

    I really appreciate the ideas. I will look into some of them. I got four units of blood on Tuesday and Wednesday so hopefully I will get some energy. I was suppose to get Mitomycin c today but platelets were too low.  Try again next Tuesday. Thanks. Jeff

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    #21
    steveandnat said:

    Thanks for feedback

    I really appreciate the ideas. I will look into some of them. I got four units of blood on Tuesday and Wednesday so hopefully I will get some energy. I was suppose to get Mitomycin c today but platelets were too low.  Try again next Tuesday. Thanks. Jeff

    steve one last option for a usa based opinion

    I am quiet friendly with a really good usa alternative doctor, his name is robert, he spoke at a conference I was also speaking at.

    he specialises in ipt chemo, insulin potentiated chemo.

    the book he wrote a chapter in defeat cancer, I mentioned hear months ago. it might be worth considering as the point of low dose chemo is to have the benefits of chemo without the extreme side effects, ie bone marrow suppression. its the main reason I cam back to germany, its not offered anywhere in australia. you are lucky its available inthe usa. 

    the book is a good read, but just read the stuff on ipt.

    the conference was on gcmaf, which may or may not be helpful, you need an immune system to be activated

    just a few suggestions.

    goodluck with whatever you do.

    hugs,

    pete

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