I could swear!

Footstomper
Footstomper Member Posts: 1,237 Member
in Kidney Cancer #1

I'm stage 4 grade 4, so newbies with grades 1 & 2 dont take fright!

So the last cancer drug I was given reduced my tumour by a third but the side effects made it impossible to eat, work, swallow, leave the bathroom or retain consciousness. Ending up with a spell in hospital with pneumonia and amnesia.

So I've had a lovely month long drug holiday which has left me feeling great, hale and hearty, when I went for a scan on Friday.

My lumps, all mets in the lungs, have now doubled in size, the largest being just over 3 cm. How big do these mets get? And he has a couple of friends along with him. I am appalled that they have doubled in size in a month and I have a good mind to rip them out with a rusty spoon and use them as cricket balls.

Balls! just balls

Anyway carpe diem! Enrolling in a trial which sounds pretty hopeful, to start next week. Naturally I hope it works, but even if it doesnt it could help someone else.

 

 

 

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Comments

  • MattInVa
    MattInVa Member Posts: 50
    #2
    Hail the 4's

    I too am grade 4 stage 4. Just started on Votrient last week. I hope the side effects don't hit too hard. I will have my first scan in Dec, I have 11 of those nice balls of joy throughout my lungs but only 2cm in size. I think we are in the same territory.

    Good luck I really hope you get a trial that really works well. Do you know the name of it?

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    MattInVa said:

    Hail the 4's

    I too am grade 4 stage 4. Just started on Votrient last week. I hope the side effects don't hit too hard. I will have my first scan in Dec, I have 11 of those nice balls of joy throughout my lungs but only 2cm in size. I think we are in the same territory.

    Good luck I really hope you get a trial that really works well. Do you know the name of it?

     

    Side effects

    Good luck. I hope it works for you. I think the side effects vary from person to person. Dont let any scare stories put you off.

  • Allochka
    Allochka Member Posts: 1,072 Member
    #4
    Footstomper said:

    Side effects

    Good luck. I hope it works for you. I think the side effects vary from person to person. Dont let any scare stories put you off.

    Wish you both very best with

    Wish you both very best with drug trials.

    Footstomper, you have a great attitude, humor and determination not to give up. Trial drugs MUST work, they simply must....

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #5
    Allochka said:

    Wish you both very best with

    Wish you both very best with drug trials.

    Footstomper, you have a great attitude, humor and determination not to give up. Trial drugs MUST work, they simply must....

    Ah

    I support West Ham. We screw up all the time. Its kind of an East London tradition.

  • nancybuck
    nancybuck Member Posts: 117
    #6
    Footstomper said:

    Ah

    I support West Ham. We screw up all the time. Its kind of an East London tradition.

    Sorry to hear this news

    I am so sorry to hear this news tonight. I will keep you both in my thoughts and prayers. Thinking only positive thoughts for you. Hugs!

     

  • APny
    APny Member Posts: 1,995 Member
    #7
    nancybuck said:

    Sorry to hear this news

    I am so sorry to hear this news tonight. I will keep you both in my thoughts and prayers. Thinking only positive thoughts for you. Hugs!

     

    That absolutely sucks and I'm

    That absolutely sucks and I'm in awe of your sense of humor in the face of such bad news. I hope the new trials does the job. The weird thing about drugs and individual biology is what works wonders for one, does nothing for another. So hopefully this new course will do the trick for you and leave you with very little side effects. Wishing you both the very best!

  • BDS
    BDS Member Posts: 172
    #8
    Clinical trial ?

    Footstomper, what clinical trial are you trying to get into? Does it involve a PD-1 drug?

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #9
    BDS said:

    Clinical trial ?

    Footstomper, what clinical trial are you trying to get into? Does it involve a PD-1 drug?

    Trial

    Bevacizumab and CRLX101

     

    AND NO, I have no idea what that means

  • suzymcdo
    suzymcdo Member Posts: 20
    #10
    Sorry to hear this news,

    Sorry to hear this news, especially after a month of feeling so well. Hoping that the trial works - and I bet even the tumours believe that shrinkage by trial drug is a better outcome than the rusty spoon you are threatening them with. Thinking of you and sending healing thoughts your way.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #11
    suzymcdo said:

    Sorry to hear this news,

    Sorry to hear this news, especially after a month of feeling so well. Hoping that the trial works - and I bet even the tumours believe that shrinkage by trial drug is a better outcome than the rusty spoon you are threatening them with. Thinking of you and sending healing thoughts your way.

    Well "stomper" wish you could

    Well "stomper" wish you could get them buggers out of your lungs! I was so worried about you when you were having those horrible side effects. Glad to know you went on "vacay" from those meds!

    As much as I too appreciate your humor and outlook, know that in your most private moments. I will be sending you love and healing strength to handle all the crap that continues to come your way. I wish I could give you a better break and actually take some of your symptoms for you, to give you a rest...sigh

    Glad you remain here...and I feel better to have heard from you again!

    Gentle Hugs, Jan

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #12
    DAMN IT!!!

    Stomps,

    Screw it, man, I'll swear for you!  DAMN IT! That is absolutely terrible that it advanced so quickly.  Definitely keep us updated on the trials; there are a lot of hopeful things going on and I really feel that kidney cancer is starting to come out of the dark, so to speak.  I actually saw a commercial here in Philadelphia for a cancer center that was about a kidney cancer survivor.  First time I'd seen that.  

    Keep your head up and I am seriously pulling for you, my friend.  Bring on the trial!

    - Jay

  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    Footstomper said:

    Trial

    Bevacizumab and CRLX101

     

    AND NO, I have no idea what that means

    I'm happy

    that you will get on a trial. I don't know those new drugs but once again it shows that there are more and more new treatments coming down the pike. Someone familiar with them should fill us in. But my money says the bevacizumab is an immunology drug. (hence the ab at the end of its name.) And the CRLX101 could be anything. However we also know that these immunology drugs work even better when used in combo. I'm also really happy to hear that you have a great chance to feel human again. I'll bet that you don't get sick from these drugs. You've endured to much. Go get'em Stomps!

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #14
    jason.2835 said:

    DAMN IT!!!

    Stomps,

    Screw it, man, I'll swear for you!  DAMN IT! That is absolutely terrible that it advanced so quickly.  Definitely keep us updated on the trials; there are a lot of hopeful things going on and I really feel that kidney cancer is starting to come out of the dark, so to speak.  I actually saw a commercial here in Philadelphia for a cancer center that was about a kidney cancer survivor.  First time I'd seen that.  

    Keep your head up and I am seriously pulling for you, my friend.  Bring on the trial!

    - Jay

    Wow Stomps, you have

    Wow Stomps, you have encountered so much - and with such humor to boot!

    I am sorry to hear that there has been some growth but am very hopeful with the new trial.

    Here's to good results-- with very little side effects!

    Hugs

    Jojo

  • mrou50
    mrou50 Member Posts: 389 Member
    #15
    Double Edged

    Your post was a double edged sword, on one hand I am happy you got a break for this crappy meds and their side effects. On the other your tumors doubled I am sorry for that.  I was just talking to my doctor about taking a medication vacation just so I know what it feels like to be normal again, you know have energy, no diarea, no nausea etc.  Now I am not so sure, well anyway you take care and I will be thinking about you good luck with the new trial.

     

    Mark

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

    I'm happy

    that you will get on a trial. I don't know those new drugs but once again it shows that there are more and more new treatments coming down the pike. Someone familiar with them should fill us in. But my money says the bevacizumab is an immunology drug. (hence the ab at the end of its name.) And the CRLX101 could be anything. However we also know that these immunology drugs work even better when used in combo. I'm also really happy to hear that you have a great chance to feel human again. I'll bet that you don't get sick from these drugs. You've endured to much. Go get'em Stomps!

    As far as I understand

    The plan is to stop DNA from replicating and repairing itself (Cancer being this proces getting out of control. I've got my viral oncologist missus doing the research. The hope is that the side effects wont be so bad, even tho' the consent form informed me that death might be an unwelcome consequence of my participation in this trial. But I guess they all say that, dont they? Dont they?

    My family are trying to stop me driving my mini, on the flimsy grounds that I passed out behind the wheel with the pneumonia. So I'm threatening to buy a Triumph Bonneville on the grounds that riding it would keep me awake. I see no flaws in this plan, but the family are quite united in their opposition.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #17
    Jan4you said:

    Well "stomper" wish you could

    Well "stomper" wish you could get them buggers out of your lungs! I was so worried about you when you were having those horrible side effects. Glad to know you went on "vacay" from those meds!

    As much as I too appreciate your humor and outlook, know that in your most private moments. I will be sending you love and healing strength to handle all the crap that continues to come your way. I wish I could give you a better break and actually take some of your symptoms for you, to give you a rest...sigh

    Glad you remain here...and I feel better to have heard from you again!

    Gentle Hugs, Jan

    Cancer

    Is a lesson in humility and the deep love that resides in humanity whatever their faith, belief, or lack of the same. I'm an athiest being prayed for in churches, synagogues and mosques in three continents. And there are some special people who just step forward with support and wisdom when its needed.

    People are great aint they?

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #18
    mrou50 said:

    Double Edged

    Your post was a double edged sword, on one hand I am happy you got a break for this crappy meds and their side effects. On the other your tumors doubled I am sorry for that.  I was just talking to my doctor about taking a medication vacation just so I know what it feels like to be normal again, you know have energy, no diarea, no nausea etc.  Now I am not so sure, well anyway you take care and I will be thinking about you good luck with the new trial.

     

    Mark

    The question

    When you're getting these side effects is "Is it worth it?" Everytime I've got to the stage of feeling that question, the Doc has taken me off the drugs, Given me a break and put me on a different drug. Every drug has reduced the tumours significantly.

    I think this is the way it goes. You take a drug until you can take it no more and then you move on to something else,. We need quality as well as quantity of life, but I will try anything to keep on going. I owe that to my family. Anyway, listen to your doc not me, all I know for certain is that I have valued every day without the symptoms you describe. But I also value everyday I get to enjoy.

  • BDS
    BDS Member Posts: 172
    #19
    Footstomper said:

    Trial

    Bevacizumab and CRLX101

     

    AND NO, I have no idea what that means

    FYI - CRLX101 - Looks Very Interesting

    CRLX101 is by Cerulean pharmaceuticals. CRLX101 is a nanoparticle-drug conjugate designed to concentrate in tumors and slowly release its anti-cancer payload, camptothecin, inside tumor cells. CRLX101 inhibits topoisomerase 1 (topo 1), which is involved in cellular replication, and also inhibits hypoxia-inducible factor-1α (HIF-1α), which research suggests is a master regulator of cancer cell survival mechanisms. CRLX101 has shown activity in four different tumor types, both as monotherapy and in combination with other cancer treatments. CRLX101 is in Phase 2 clinical development and has been dosed in more than 300 patients. The U.S. FDA has granted CRLX101 Orphan Drug designation for the treatment of ovarian cancer and Fast Track designation in combination with Avastin in metastatic renal cell carcinoma.

    Researchers at the University of Pennsylvania Abramson Cancer Center evaluated CRLX101 plus bevacizumab in nine patients with renal cell carcinoma, which is associated with high levels of HIF-1 alpha.

    Three patients (33%) demonstrated RECIST criteria for partial response with CRLX101 plus bevacizumab, compared with the 2% partial response rate reported in prior studies of bevacizumab alone. The three patients who demonstrated partial response, as well as a fourth who achieved stable disease, achieved longer PFS with this drug combination than with any other prior treatment regimen.

    Researchers noted fewer adverse events of all grades in patients with renal cell carcinoma who received CRLX101 compared with published data on irinotecan and topotecan.

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    #20
    Footstomper said:

    The question

    When you're getting these side effects is "Is it worth it?" Everytime I've got to the stage of feeling that question, the Doc has taken me off the drugs, Given me a break and put me on a different drug. Every drug has reduced the tumours significantly.

    I think this is the way it goes. You take a drug until you can take it no more and then you move on to something else,. We need quality as well as quantity of life, but I will try anything to keep on going. I owe that to my family. Anyway, listen to your doc not me, all I know for certain is that I have valued every day without the symptoms you describe. But I also value everyday I get to enjoy.

    Footstomper, I was sorry to

    Footstomper, I was sorry to read this, but with your attitude I am sure you will have success on the new drugs.  I will keep you in my prayers.  You were one of the first to reply to me when I was first told that I had kidney cancer.  You truly have been a blessing to many.  

    I hope your treatment will be successful with limited side effects.

     

     

  • marosa
    marosa Member Posts: 334 Member
    #21
    Shecka1121 said:

    Footstomper, I was sorry to

    Footstomper, I was sorry to read this, but with your attitude I am sure you will have success on the new drugs.  I will keep you in my prayers.  You were one of the first to reply to me when I was first told that I had kidney cancer.  You truly have been a blessing to many.  

    I hope your treatment will be successful with limited side effects.

     

     

    At a loss for words

    I visit this page every other day but find it hard to comment for lack of experience but much more often for being at a loss for words that so many of you do so well in delivering feelings and thoughts to words... so here I am again at loss for words but just want to say what a terrific person I think you are, how much good you do to others and I think to yourself as well, with your amazing humor and your powerful positive attitude.  Always, always here cheering for you Stomp!!!

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