Hi, my husband is a stage 4, SLL/CLL survivor, he was first diagnosed as a healthy 49 year old man and after 6 months completed 6 grueling rounds of FCR which gave him a fantastic and healthy 10 years with no detectable cancer. About a year ago after struggling with a 6 month respiratory infections his cancer was back and around the same time he had a complete immune system collapse he had no neutrophils and incredibly low WBC's, it was a frightening time and he battled back restoring his immune system with neupogen shots and monthly IVIG infusions. From January to June we watched and waited and did a lot of blood tests. In May my husbands LD climbed to 874. Our original plan was for my husband to fall to start chemo, a combination of Imbruvica, Rituxian and ? (another one) anyway because my husband's tumors had grown so much our Oncologist was not comfortable waiting to start chemo and put my husband on Imbruvica at the end of June. The first 6 weeks on Imbruvica after the initial nausea my husband had very few side effects and his LD fell into the 300's. The last four weeks of my husband's 10 weeks on Imbruvica my husband experienced a lot of diarrhea and finally ended up in the ER twice in a week once with chest pain and the second time with a bad infection from an abscess that required surgery immediate stop of Imbruvica etc. My husband has been off of imbruvica for 11 days and about for the last 5 days he has been in pain in all his lymph nodes and they have grown a lot from barely detectable to large again. My husband has been blessed and had rarely benn in pain since his cancer battle began. My question, what does anyone know about cancer growth after stopping Imbruvica. We see our oncologist again this coming week, obviously he has been very involved with us, my husband's surgeon, internist, etc since the emergencies. I know my husband cannot begin any treatment until he heals but I have to say we are incredibly concerned with the LD (it climbed 200 points in a couple weeks to 600 now) climbing again and his pain in the lymph nodes. Thanks in advance to anyone who shares. <3
Questions about stopping Imbruvica due to infe... - CLL Support
I'm so sorry to hear how poorly your husband has been. CLL can accelerate rapidly when Ibrutinib is stopped but your Oncologist should also consider Richter's too. Clearly his appointment with the oncologist can't come soon enough and I'm glad it's this week.
I'm sorry I can't be more helpful but I'll be thinking of you, please let us have an update when you know more.
Hi, thanks so much for responding. My husband was tested back in January after when his cancer came back to see if it had Richter transformed, that was the fear of our Oncologist but all tests, bone marrow biopsy etc came back as the same cancer he had before. We are definitely alarmed and surprised with how fast his lymphs changed since stopping Imbruvica. The pain he experienced most of the last 10 days since surgery has diminished quite a bit in the lymph areas but the lymphs have not diminished in size. Again thanks for responding and the well wishes. It is a difficult time right now.
I think you should request a PET or CTscan as soon as possible and a second opinion from a CLL hemetologist...
What is the largest city near you? Others may know of doctors who specialize in CLL. Perhaps your oncologists knows a specialist?
The recommend suspension of Imbruvica (ibrutinib) is ~ 7 days before and after for major surgery, so perhaps your husband's oncologist will advise him start again.
Please let us know..
Hi Chris, thanks for responding. Our Oncologist is a specialist in blood cancers, we are in good hands with him and confident. We do see him on Tuesday to see what our next step is, my husband will also have labs on Tuesday prior to the visit. I will talk to my husband about the PET scan and talk with our oncologist about it. In the meantime, my husband's surgical site is draining again after appearing to be healing well a few days ago so we know that before he goes back on chemo he will have to be healed from the infection and surgery. Thanks for your responding and I will update when I can.
Perhaps these responses to ibrutinib questions by Dr. John Byrd may be helpful ... cllsociety.org/newsletter/q...
Here's additional info from the link I provided above. This is Dr. John Byrd's response to a question about stopping ibrutinib for surgery (CLL Tribune Volume 1, Issue 1 - CLL Society):
In general, we ask patients to hold their ibrutinib for 3 days before and after minor procedures (tooth extractions, bunion surgery, etc.) and 7 days before and after for major surgeries (gall bladder removal, knee surgery). Also, we do not start ibrutinib until all bleeding complications have resolved post-surgery. In some patients whose therapy is stopped even for brief periods of time, the lymph nodes can transiently increase. If the patient was responding before, it almost always happens that re-starting the drug will result in these nodes shrinking again. In general, this does not signify that patients are resistant to the drug. This flare effect generally does not occur when people have been on ibrutinib for a long time. For this reason, I generally recommend putting off elective surgery until 9-12 months after starting ibrutinib when possible.
Note: I added the underline emphasis.
Thanks LynnB, it is comforting to know that most people are responsive to the drug again and to know that the rapid growth has happened.
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