• cjs7159's Avatar

    cjs7159 posted an update

    I have been accepted into a Stage I clinical trial at Penn in Philadelphia to start on Wed. I will be the 2nd person to receive it. I am hopeful, but a little apprehensive. Hoping this might be the medication that can control my CLL since all the others that I have received have not been successful.

    4 Comments
    • Kennedy's Avatar
      Kennedy

      Hoping this will be THE ONE. May I ask how long ago you were diagnosed? I was diagnosed in May 2015 and so far need no treatment. Sending good thoughts your way.

      over 4 years ago
    • cjs7159's Avatar
      cjs7159

      I was diagnosed in 1997 at the age of 38 & stage 0. I am now 57 & stage IV. I was treated previously with FCR in 2007 & Obinutuzumab in 2015. The FCR worked wonders, but the Obinutuzumab did not have the desired effect. So, now I am seeing one of the top specialists in the country & starting this new med.

      over 4 years ago
    • Kennedy's Avatar
      Kennedy

      Thank you. I was diagnosed at 69, and am now 70. I really do hope that this new team and meds will work well for you. I see that you went the first 10 years without treatment. That is certainly what I am hoping for- at least. I will be sending good thoughts your way.

      over 4 years ago
  • cjs7159's Avatar

    cjs7159 posted an update

    I completed my course of Obinutuzumab at the end of December. Dr. not happy with my response. My platelets are still very low. Labs are being drawn every 2 weeks. I had a bone marrow biopsy yesterday to see if there is another underlying cause for the low platelets. I will see the Dr. in 3 weeks to get the results. Hoping for nothing new, just a slow response. Prayers appreciated.

  • cjs7159's Avatar

    cjs7159 posted an update

    Finished my chemo treatments today & had my PICC line removed. Got to ring the bell. Yeah!!!! Dr. is still puzzled by my non-response. I will need a bone marrow test in 3 weeks & see what my options are, but for now I am happy with where I am. It's off to Florida on Sat., hopefully for some warmer weather & visits with a few friends. Be well!

  • cjs7159's Avatar

    cjs7159 posted an update

    Started Imbruvica last week for my CLL due to low platelet count. Developed blood blisters in my mouth after only 4 days. Platelet count dropped to 14. Had platelet transfusion last evening & am to start on Obinutuzumab infusions next week to see if platelet counts can be increased & then restart on Imbruvica. Not what I was hoping for, but at least there is an alternative to the Imbruvica while my platelets are low. Wish me luck please.

    2 Comments
    • zetacat's Avatar
      zetacat

      I had wonderful success with Obinutuzumab and everything started going in a positive direction. There were no side effects. Will you be taking the pills after each chemo? They were called Luekeran and needed refrigeration. Let me know how things go.

      almost 6 years ago
    • cjs7159's Avatar
      cjs7159

      Thanks zetacat. It is good to know that you had a positive experience. I am hoping for the same. I had a similar drug Rituxan in 2008 with my FCR cycles & did well with that so I am hoping this works the same. The plan is for me to go back on the Imbruvica capsules after the infusions get my numbers more stabilized.

      almost 6 years ago
  • cjs7159's Avatar

    cjs7159 posted an update

    Had my routine follow up with oncologist last Tues. Platelets at an all time low of 17. To start on Imbruvica 4/day at a cost of over $10,000/month. Waiting to see what insurance will cover.

  • cjs7159's Avatar

    cjs7159 posted an update

    Saw oncologist Friday. Got clearance for surgery. Will see surgeon today to schedule biopsy on enlarged nodes to see if it is a rapid progression of my CLL or another malignancy. I am hoping for the CLL, at least I will know what to expect.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Good news you get to move ahead, let us know what is happening and ask those questions if you have any.

      almost 7 years ago
  • cjs7159's Avatar

    cjs7159 posted an update

    My biopsy surgery is scheduled for Friday Aug. 15th. Going to the beach to enjoy my husband & my granddaughter from Sun-Thurs. Cutting is short to come back for the surgery. I just want this over, so I know where we go from here.

  • cjs7159's Avatar

    cjs7159 posted an update

    I got some bad news last week. I started with painful enlarged lymph nodes in left groin. CT shows rapid progression of my CLL or possibly transition to a new malignancy. I also have possible tumor infiltration in a rib & a hernia with small bowel stuck in. Will be scheduled for surgery to biopsy nodes in groin & fix hernia. A progression of my CLL would be the best case scenario. Would appreciate thoughts & prayers as I prepare for the upcoming battle. Thanks for allowing me to share my concerns.

    5 Comments
    • cjs7159's Avatar
      cjs7159

      Thanks for the encouragement. I meet with my oncologist tomorrow for clearance for surgery which is tentatively scheduled for next Wed. Now work tells me that it needs to be an emergency to apply for leave or I may need to wait. Are you kidding me?!!!! I consider the diagnosis of a cancer to be necessary, not elective.

      almost 7 years ago
    • GregP_WN's Avatar
      GregP_WN

      You gotta love the common sense of insurance companies and HR people at corporations. HOpe you get that worked out.

      almost 7 years ago
    • Blazin's Avatar
      Blazin

      Your main concern is your health so don't worry about the job right now take that fight to them when your health issues are resolved. All the best.
      . . . . . . . Blazin. . . .

      almost 7 years ago
  • cjs7159's Avatar

    cjs7159 posted an update

    3 month appointment today with oncologist. Platelets remain low & he is stumped as to why. He has calls my disease progression "odd". Will need to continue monthly blood work & 3 month appointments for now, but no treatment at this time. I thank God every day for these small favors. I am feeling fairly well & living my life despite this disease.

  • cjs7159's Avatar

    cjs7159 posted an update

    Going for my 3 month checkup on Wednesday. Dr. told me last 2 appointments that more chemo is coming soon. I am currently in college & hope to graduate at the end of Oct. Hope I can put chemo off until after I am finished. I don't think I can do both at the same time. Positive thoughts.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Good luck on the checkup!! If you can do chemo and continue school will depend on so many things it's just hard to say right now. Some people take it and never miss a step. Others get chemo and are in bed for a week at a time. Depends on a lot. Post this as a question and let others give you their thoughts.

      almost 8 years ago