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Thread: Car t

  1. #81
    Moderator Top User
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    Hi good to see another positive post, I nearly shared this earlier but have the doctors considered if James may be suffering with delirium ? I have seen this at first hand with a relative who was in hospital for 11 weeks and who had serious infections, he experienced this whilst in hospital and we would have the oddest of conversations and when he told us what he saw on a night time especially it was both weird and bizarre.

    Just a thought, here's to more good news and you both catching a break at around 6 months

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  2. #82
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    I have had concerns myself about delirium but his doctors never mention it. He is detailed about what he sees and , yes bizarre is a good word to describe it. Mostly, shapes and figures. Very odd. We see his pain med doctor but I really don't think its his medication. He has been on the same pain meds for the last several years and never experienced anything like this. Thanks for your reply.

  3. #83
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    Day 101

    Last Wednesday, James wasn't feeling well. He was having a lot of pain in his legs. He was sick early in the morning Thursday but we attributed it to the dose of neupogen. By Friday morning, he woke up with a sore throat that prevented him from drinking. Long story short, we drove back and forth Friday, Saturday, Sunday and today to receive fluids. Nothing grew in cultures and everything else checked out ok so we do not know what happened. He did have a low grade fever.

    One thing I didnt know is that James ANC dropped to 50 last week. By Friday it was 250. Today his preliminary was between 1000-1500. I asked why his red blood cells were ok but his white cells are continuously low. They do not know if he still has engineered cells in his body or if the engineered cells trained his new t cells to act like they did. I am not sure if his new t cells are now trained to fight CD19 which is in all of our b cells. Perhaps this is whats happening and why his ANC is so low.

    James is feeling much better today but it took a full week of rest and fluids to get him back to feeling good.He is also on Bactrim which lowers his white count so starting in June, he will stop teh Bactrim and start a new monthly treatment. It is a once a month breathing treatment to add antibiotics into his lungs.

    We left today without lab reports, so I will check on them in a few days and edit to include on this post. I hope everyone is well and enjoying life.

  4. #84
    Super Moderator Top User po18guy's Avatar
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    Good that you are both off the roller coaster for now and have your bearings once again. This has been the year for unknown viruses. Candid doctors will readily admit that they are very relieved when unknown illnesses resolve on their own, as they could only treat symptoms and not causes. CAR-T seems to resemble transplant inasmuch as blood numbers fluctuate wildly and that is accepted as the normal course of things.

    Well, so far, so good.

  5. #85
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    Day 118

    Hello. We've had a few weeks off (from apts) and everything has been good. We haven't been able to travel. James' dr wanted us to stay close unless we had a place to go for labs and since we didn't, we have been getting a few things done around home.

    James' dr appointment went really well today. His labs are almost all in normal range. He's really doing terrific. June 6th will be five years since he was diagnosed with ALL PH+ b cell. I cant not believe all he's endured. I have a drawing (treatment plan) that Dr Shah made for us during our consultation. I wonder if his drawings are different now. I wonder if he will include CAR T as a standard of care option to new patients. I wonder where Blincyto stands and if CAR T will soon be approved. Dr Shah is going to the ASCO conference soon in Chicago. I understand he's either going to speak about ZUMA III or someone else is. I sure hope its him. James has seen many wonderful doctors, nurses, PA's , ARNP, techs, and employees etc. but one person has been constant in his care for five years. Thats Dr Shah. He is an amazing doctor and has taken care of my husband like he's his own family. We have never felt as though we weren't important or were cut short of his time. We probably aren't the easiest people to explain things to but he's never made us feel uncomfortable or dumb. He asks about our children, dog, trips and our car that we are restoring. You can tell, he genuinely cares. For tose reasons, I am making him something special. I wish I could share a picture of it, but I haven't found a way to share a picture.

    Back to the appointment ... Everything is good with James except he continues to have low immune system and his b cells are extremely low. I do not know what the correct name is but its all the immunaglobin (sp) numbers. I believe they are his b cells. Obviously, because his CAR T targeted the b cell, they believe his new t cells learned from the engineered cells and now continue to target b cells. He will start nebulizer treatments on the 10th of this month to protect him from infections. Dr Shah will take him off Bactrim and start this new treatment. Its my understanding Bactrim lowers white count and the other treatment wont.

    We also received his clonoSEQ report from May 8. This is an in vitro diagnostic that uses multiplex polymerase chain reaction (PCR) and next generation (NGS)to identify and quantify rearranged Igh receptor gene sequences as well as translocated sequences in DNA from patients with b cell all or multiple myeloma. ( I copied that from the test) I know that it detects mutations including the Philadelphia chromo and the other mutation James had. Anyway, there is no evidence of either mutation. ZERO evidence, not MRD but NONE. Thats amazing to me.

    I do recognize this is still an extremely dangerous disease and realize it can come back at any time. I am just an extremely positive person and believe my husband is part of a cure for leukemia.

    Next appointment is June 10th. We are loving the two weeks in between appointments. : )

    I hope all is well with you all and you are enjoying life. Have a great few weeks.

    WBC 3.51
    Hgb 14.8
    Platelets 220,000
    ANC > 1.5
    C Reactive .41

  6. #86
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    Your positive reports will help those who follow and its good to see that on balance things are improving more, 2 weeks for appointment is good to lets hope you have a good summer and can enjoy the future
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #87
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    Day +129 (Monday)

    James went in for his check up Monday morning. He was also scheduled to start monthly Pentmadine treatments. Shortly after treatment started, James began choking and then he passed out. He had a severe allergic reaction to the medication. Initially, they thought he suffered another stroke, but after eegs and other tests, it was determined that wasn't the case. His right eye swelled closed and he had a lot of confusion. Because of the confusion, they also did an MRI, CT scans and a lumbar puncture. They mostly saw lymphocytes in the spinal fluid and are waiting for the flow to see if they are T or B cells. They suspect mostly T cells since the B cells are low in his blood.

    He still does not remember what happened. He spent three days in PCU and is now home resting. Needless to say, he will not be receiving any more pentmadine.

    Well, I hope everyone is well and enjoying life. Every day is precious.

  8. #88
    Moderator Senior User IndyLou's Avatar
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    Wow, what a rollercoaster ride you're on! There's just never a dull moment with James, is there?!! I'm glad to hear that he's OK now, despite the scare with pentamidine. Thank goodness he was in the hospital when this reaction occurred. I hope he continues to recover.

    Can you remind me, did you two take the trip to Grand Canyon yet?

  9. #89
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    IndyLou, No. Not yet. Because his immune system is so low, we have not been able to travel. Hopefully this fall. I imagine it will depend on the weather.

    James seems fine today. It certainly has been a rollercoaster. Oh my, I just realized today is 5 years since he started treatment at Moffitt. He was diagnosed 6/6/2014 and started HYPER CVAD 6/13/2014.

  10. #90
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    5 months post CAR T ZUMA 3

    Today was James' 5 month post CAR T check up. His labs were good and it was a quick visit. I'm not sure if its delirium, but he still talks out loud and doesn't realize what he's saying until after he says it. Mostly random things. He is very tired most days, and takes a long afternoon nap but he really seems to be doing well. His immunoglobulins continue to reamain low at; IgG <300 IgA <50 IgM <25

    His six month bone marrow biopsy will be 7/29 and we're off until then. We are really enjoying the long time in between visits.

    There is an article about the results of phase 1 ZUMA 3 trial and a video from James' Dr at Moffitt on the Moffitt Facebook page if you are interested. Thats the only way I know how to access it.

    I hope all is well with everyone.

    WBC 3.84
    Hgb 13.3
    Platelets 186
    ANC > 1.5
    C Reactive .38

 

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