Just a few days shy of on month

Baaa-bs
Baaa-bs Member Posts: 50
edited October 2013 in Kidney Cancer #1

Today I had my Dr appointment to discuss my CT scan results. The good news is.... that the Torisel has gotten rid of the small tumors in my lung. The bad news is.... that the Torisel has not worked on the tumor in my liver. In fact, the tumor has grown. The pain I've been feeling is not because I'm a drama queen, although that is the resut I wanted to share with you all. But instead, as the tumor grows, it presses against the thin skin encasing it that contains nerves. Those nerves are being pressed too much, and hence, pain pills.

My Dr is consulting with a big shot Kidney cancer specialist at the University of Chicago. They might decide to put me on Votrient, or maybe I can get into this trial drug PHL 1 or PHD1, I forgot what he said. It's an oral med, but I don't know if I'll qualify, or if there are any spots available.

The Torisel also has worked on "some" of the lymph nodes, the others it didn't do anything. So for now, I'm off treatment to flush the Torisel out of my system, and I will know what Plan B will be by the end of this week.

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    A crazy ride

    As Rosanna, Rosanna Dana said, "If it's not one thing, it's another." So many of us are getting pretty good at changing meds. Part of our trip Baaa-bs. Keep the faith  and keep going forward. Plenty of karma to go around.

  • Limelife50
    Limelife50 Member Posts: 476
    #3
    Hey Baaa-bs

    As Gilda would say It"s Always Something,i guess this could not be any more true in your case.You are not a drama queen you have a very serious illness so do not pay attention to the ignorant ones,trust me on this if they were in your shoes they would be crying like little babies.Try to remain positive and keep the faith and if you hurt speak up and let your Doctors know.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
    Limelife50 said:

    Hey Baaa-bs

    As Gilda would say It"s Always Something,i guess this could not be any more true in your case.You are not a drama queen you have a very serious illness so do not pay attention to the ignorant ones,trust me on this if they were in your shoes they would be crying like little babies.Try to remain positive and keep the faith and if you hurt speak up and let your Doctors know.

    Hi ya BaaA-BS..  OK, I must

    Hi ya BaaA-BS..  OK, I must say, that for the type of Met you describd, Votrient worked great for me.. for the short time I was on it.  Hope it rids you of that nasty Liver met..!

    Prayers..

    Ron

  • Baaa-bs
    Baaa-bs Member Posts: 50
    #5
    Thanks everyone

    Thanks for the pep talk. I'm anxious to see what Plan B will be.... I'll let you know what they say at the end of the week. In the meantime, heads up, and I'll carry on. Life is too short to not enjoy it.

  • twinthings
    twinthings Member Posts: 409
    #6
    Baaa-bs said:

    Thanks everyone

    Thanks for the pep talk. I'm anxious to see what Plan B will be.... I'll let you know what they say at the end of the week. In the meantime, heads up, and I'll carry on. Life is too short to not enjoy it.

    Spirit

    Love your spirit, Baaa-bs!  Attitude can make us or break us and you my dear, have THE best attitude!  I think we can all agree, you are such an inspiration!

    Will pray that Plan B brings healing options your way.

     

    Sindy

  • alice124
    alice124 Member Posts: 896 Member
    #7
    Baaa-bs,
    I know you're

    Baaa-bs,

    I know you're disappointed the Torisel wasn't a fix all, but it sounds like your doctor is on top of your treatment plan and unafraid to ask for advice. That's extremely important.

     

    Keep the faith as you flush the Torisel and upload the next treatment. Your attitude, good doctors,  and the concern and support of your many friends on CSN will be valuable asets as you begin the next step.  We're here for you.

  • PK_Chicago
    PK_Chicago Member Posts: 58
    #8
    Torisel -

    All of us live life from scan to scan - but it's good your doctor is consulting.  There is also a very good kidney doctor at Northwestern as well - that's who I'm seeing now.  I wasn't real sure about Loyola when I went there - but living in Chicago gives us many options! Are they going to biopsy the liver to be sure it's related?  I had kidney and thyroid in the same year - they were not related.

    Keep swinging! 

    PK

  • danbren2
    danbren2 Member Posts: 311
    #9
    First you up, then you come down!

    Baabs,

         The roller coaster ride is constantly throwing in new twists and turns.  The great news is your attitude is awesome, which can bring us back to the good news and that is there is a plan!  Your Doctor is working on other treatments for you, and with your tude, there are bound to be good! Smile

                     Here's hoping and praying only good results for you from here on out!

                      Brenda

  • Baaa-bs
    Baaa-bs Member Posts: 50
    #10
    Plan B is decided

    Finally had my appontment with my oncologist yesterday. He told me earlier about a trial drug he thought I might qualify held at the University of Chicago. The University is quite far from my home... but I'm game if this drugs works. Now I find out I don't qualify for the drug, but do qualify for the trial on a new fancy smanchy MRI that might show tumor growth or shrinkage better than the current CT scans.

    The treatment will be the same, tests will be the same, everything is the same except the MRI vs CT scans. The University of Chicago can't be reached by the Metra trains, parking is really expensive, and it would take me 1-1 1/2 hours to get there and back home after spending the entire day there. I don't know if any of you are familiar with Chicago traffic, but 1-1 1/2 hours really means 2-3 if I don't hit the right window. Just to be a trial participant with and MRI. I can have the same treatment but will be tested with CT scans at my current hospital, only 15 minutes away and 25 during rush hour.

    They will put me on 800mg of Votrient. I was a little taken aback that they wouldn't start with 600mg and work their way up. That's another question I have. Well, just thought I'd keep you updated. Since I was told yesterday that my cancer is very aggressive, I can't wait to get this show on the road.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #11
    Baaa-bs said:

    Plan B is decided

    Finally had my appontment with my oncologist yesterday. He told me earlier about a trial drug he thought I might qualify held at the University of Chicago. The University is quite far from my home... but I'm game if this drugs works. Now I find out I don't qualify for the drug, but do qualify for the trial on a new fancy smanchy MRI that might show tumor growth or shrinkage better than the current CT scans.

    The treatment will be the same, tests will be the same, everything is the same except the MRI vs CT scans. The University of Chicago can't be reached by the Metra trains, parking is really expensive, and it would take me 1-1 1/2 hours to get there and back home after spending the entire day there. I don't know if any of you are familiar with Chicago traffic, but 1-1 1/2 hours really means 2-3 if I don't hit the right window. Just to be a trial participant with and MRI. I can have the same treatment but will be tested with CT scans at my current hospital, only 15 minutes away and 25 during rush hour.

    They will put me on 800mg of Votrient. I was a little taken aback that they wouldn't start with 600mg and work their way up. That's another question I have. Well, just thought I'd keep you updated. Since I was told yesterday that my cancer is very aggressive, I can't wait to get this show on the road.

    Go get 'em

    Baaa-bs, I'm a strong believer in trials. nivolumab saved me for a year and a half. I haven't been on any anti-angiogenics yet because they are still focused on curing me and not treating me. Should this Il-2 not work, the plan will change. I will keep my options open to another clinical trial though. And I will be very informed when making a decision. But I know it feels good to have a plan in place. Good luck to you.

  • Baaa-bs
    Baaa-bs Member Posts: 50
    #12
    Baaa-bs said:

    Plan B is decided

    Finally had my appontment with my oncologist yesterday. He told me earlier about a trial drug he thought I might qualify held at the University of Chicago. The University is quite far from my home... but I'm game if this drugs works. Now I find out I don't qualify for the drug, but do qualify for the trial on a new fancy smanchy MRI that might show tumor growth or shrinkage better than the current CT scans.

    The treatment will be the same, tests will be the same, everything is the same except the MRI vs CT scans. The University of Chicago can't be reached by the Metra trains, parking is really expensive, and it would take me 1-1 1/2 hours to get there and back home after spending the entire day there. I don't know if any of you are familiar with Chicago traffic, but 1-1 1/2 hours really means 2-3 if I don't hit the right window. Just to be a trial participant with and MRI. I can have the same treatment but will be tested with CT scans at my current hospital, only 15 minutes away and 25 during rush hour.

    They will put me on 800mg of Votrient. I was a little taken aback that they wouldn't start with 600mg and work their way up. That's another question I have. Well, just thought I'd keep you updated. Since I was told yesterday that my cancer is very aggressive, I can't wait to get this show on the road.

    Plan B

    starts tomorrow! The Dr's fought it out as to whether I can start still having issues with the bronchitis. The Oncologist won! I start Votrient 800mg tomorrow! Now I finally have a weapon to attack with. May this treatment allow me to go in fighting with a take no prisoner approach, and may the side effects be at a minimal.

  • Djinnie
    Djinnie Member Posts: 945 Member
    #13
    Baaa-bs said:

    Plan B

    starts tomorrow! The Dr's fought it out as to whether I can start still having issues with the bronchitis. The Oncologist won! I start Votrient 800mg tomorrow! Now I finally have a weapon to attack with. May this treatment allow me to go in fighting with a take no prisoner approach, and may the side effects be at a minimal.

    Plan B

    All the best Baaa-bs, hope this new treatment works well for you!

    Djinnie x

  • Baaa-bs
    Baaa-bs Member Posts: 50
    #14
    One day shy of one month

    on Votrient. Didn't seem to have too many problems with side effects, at first. Went to the Dr several times complaining of flu like symptoms, I still disagree with them that a temp of 101.8 could just be tumor fever. Having headaches and still coughing real bad.

    The last Dr visit they were very concerned about my swollen foot. Rushed me off to get a Doppler ultrasound on my legs. As luck would have it, they found a clot. Now rush me off to the ER where the do a CT scan of my chest. Of course, don't they find several! So I am immediately admitted to the hospital with: Pulmonary Embolism and DVT.

    The CT scan also showed the lymph nodes have gotten larger, however, they are not too concerned since I have only been on the Votrient 1 day short of a month. They want the med to have more time. Although I feel the tumor in the liver might have gotten larger too as I am having more pain there.

    So.....I was looking forward to having my hair turn white, only getting thinner.

    Will need to give myself blood thinner injections daily forever because of the clots. I'm on 80 mg of Lovenox.

    Looks like I will be put on a stronger pain med, I turned it down once, but looks like I should give it a try since the vicodin just isn't cutting it anymore.

    Just thought I would include you all in my very own whine and cheese party. I hate cancer!

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    Baaa-bs said:

    One day shy of one month

    on Votrient. Didn't seem to have too many problems with side effects, at first. Went to the Dr several times complaining of flu like symptoms, I still disagree with them that a temp of 101.8 could just be tumor fever. Having headaches and still coughing real bad.

    The last Dr visit they were very concerned about my swollen foot. Rushed me off to get a Doppler ultrasound on my legs. As luck would have it, they found a clot. Now rush me off to the ER where the do a CT scan of my chest. Of course, don't they find several! So I am immediately admitted to the hospital with: Pulmonary Embolism and DVT.

    The CT scan also showed the lymph nodes have gotten larger, however, they are not too concerned since I have only been on the Votrient 1 day short of a month. They want the med to have more time. Although I feel the tumor in the liver might have gotten larger too as I am having more pain there.

    So.....I was looking forward to having my hair turn white, only getting thinner.

    Will need to give myself blood thinner injections daily forever because of the clots. I'm on 80 mg of Lovenox.

    Looks like I will be put on a stronger pain med, I turned it down once, but looks like I should give it a try since the vicodin just isn't cutting it anymore.

    Just thought I would include you all in my very own whine and cheese party. I hate cancer!

     

    Damn!

    It is never fun and games is it? Stay tough. You will get better. I'm at 2 1/2 years with a long way to go. You will too. But it is a hell of a test.

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