Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 I would want to know why those treatments were being considered. Different markers can indicate that a treatment is more or less likely to be successful. I would also ask about trials. CAL101 trial patients, for example, have shown good response if the lymph nodes are involved, though other labs might indicate that the two treatments being considered have a better chance for success. You should also know if there is any chance of Richter's Transformation. Treatment in that case would be different from that for CLL. Pat On 3/28/11, wercajulie8 <klgarberg@...> wrote: <snipped> > > Today he saw his oncologist who informed him that the CAT > Scan showed the mass " a size of a small football " was (a) > swollen lymph node(s). His RBC is normal; and his WBC is > 63,000. We will not receive the lymph node biopsy until > tomorrow afternoon. > > They took a bone marrow test today and we will have those > results on Wednesday. His doc has recommended Rituxan > coupled with either Treanda or RCHOP, depending on the > results of the biopsy and marrow. They want him to start > the chemo on Thursday for six three-week cycles. <snipped> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 wercajulie8, I've had treatment (tx) 4 times—it's vital to have a consult with an experienced hematological oncologist about any chemo regimen. MDs without specific expertise in CLL (or blood cancers) can come up with regimens based on insufficient or misleading data. This regimen you mention may be totally right for your father but it's not a sure thing by any means. For ex: Bendamustine (Treanda) has had limited success with CLL compared to other drugs. Also Rituxan isn't very effective on reducing nodes. As Pat K. said, CAL 101 is. So I'd want to really know why his doc wants these drugs! Your father has 2 major CLL symptoms: an abnormal WBC and swollen lymph nodes. Which of those is determining the need for tx? His WBC count alone isn't that high but how quickly he got there would be very important. If you call Kipp's office, ask the sec'y if he's available for an immediate phone consult. If so, they'll tell you what info he requires. The type of chemo can greatly affect the future course of your dad's disease. If you can't get a consult in b4 tx, do it as soon as you can. Re general CLL questions, try the website: http://tinyurl.com/2chur62 or http://www.cancer.net/patient/Cancer+Types/Leukemia+-+Chronic+Lymphocytic+-+CLL and click on the pink icon with the ? in the middle. Frances Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Thank you, Frances. I passed on the information you and and Pat have provided - as well as so many others - to my brother who is with my parents right now at UCSD. They are seeing Dr. who works with Dr. Kipps. My dad is not anxious to do trials - he's a " tried and true " kind of guy, however, so many of you have mentioned other options, I'm hoping he learns more about them today. His appt. is right now, actually, so I'm sending him good vibes and hoping he gets the info he can to help him make such an important decision. Thank you all so much for your guidance. > > wercajulie8, > I've had treatment (tx) 4 times—it's vital to have a consult > with an experienced hematological oncologist about any chemo > regimen. MDs without specific expertise in CLL (or blood > cancers) can come up with regimens based on insufficient or > misleading data. This regimen you mention may be totally > right for your father but it's not a sure thing by any > means. For ex: Bendamustine (Treanda) has had limited > success with CLL compared to other drugs. Also Rituxan > isn't very effective on reducing nodes. As Pat K. said, CAL > 101 is. So I'd want to really know why his doc wants these > drugs! Your father has 2 major CLL symptoms: an abnormal > WBC and swollen lymph nodes. Which of those is determining > the need for tx? His WBC count alone isn't that high but > how quickly he got there would be very important. If you > call Kipp's office, ask the sec'y if he's available for an > immediate phone consult. If so, they'll tell you what info > he requires. The type of chemo can greatly affect the future > course of your dad's disease. If you can't get a consult in > b4 tx, do it as soon as you can. Re general CLL questions, > try the website: http://tinyurl.com/2chur62 or > http://www.cancer.net/patient/Cancer+Types/Leukemia+-+Chronic+Lymphocytic+-+CLL > and click on the pink icon with the ? in the middle. > > Frances > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Thanks so much to everyone for your guidance. My brother and mother went with my father to see Dr. (of Dr. Kipps) yesterday. She is waiting to see his biopsy (arm lymph node) and bone marrow results before determining treatment. She also wanted to check his red blood cells/ hemoglobin, and ran some tests with " reassuring " results that he would be up for treatment. Although my father was upset that the treatment will be delayed for a few weeks, he was very grateful to be at the UCSD facility. He felt Dr. was immensely thorough and gave him an hour and half of her time. She had the same recommendations as his onc (with a modification to the R- CHOP) if my father's biopsy came in with large cells. We also learned that my father tested negative for ZAP-70 in 2008, but she is re-running that test in her lab. We think that she wanted to rule out Richter's Transformation - due to the rapid growth of the abdominal lymph node (the size of a football). He has also had some weight loss. We are under the impression that the bone marrow test will show us this. Our question - if he tested negative for ZAP-70, can he still have Richter's Transformation - is that likely? And, from what we are learning about Richter's - this would not be good news. Any insight would be greatly appreciated. Thank you, as always, so much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2011 Report Share Posted April 8, 2011 Interesting that you talk about bendamustine having limited success and rituxan not being good for nodes. I have had exactly the opposite experience - I had a shortened course because of the dramatic effects on my blood counts, and almost immediate and dramatic reduction of nodes with the combination of rituxan and bendamustine. Similarly, with rituxan 7 years ago my nodes were dramatically reduced. But I am an n of 1. Best, Marietta <moderator snipped excess quoted text> > wercajulie8, I've had treatment (tx) 4 times—it's vital to have a consult with an experienced hematological oncologist about any chemo regimen. MDs without specific expertise in CLL (or blood cancers) can come up with regimens based on insufficient or misleading data. This regimen you mention may be totally right for your father but it's not a sure thing by any means. For ex: Bendamustine (Treanda) has had limited success with CLL compared to other drugs. Also Rituxan isn't very effective on reducing nodes. As Pat K. said, CAL 101 is. So I'd want to really know why his doc wants these drugs! Your father has 2 major CLL symptoms: an abnormal WBC and swollen lymph nodes. Which of those is determining the need for tx? His WBC count alone isn't that high but how quickly he got there would be very important. If you call Kipp's office, ask the sec'y if he's available for an immediate phone consult. If so, they'll tell you what info he requires. The type of chemo can greatly affect the future course of your dad's disease. If you can't get a consult in b4 tx, do it as soon as you can. Re general CLL questions, try the website: http://tinyurl.com/2chur62 or http://www.cancer.net/patient/Cancer+Types/Leukemia+-+Chronic+Lymphocytic+-+CLL and click on the pink icon with the ? in the middle. Frances Quote Link to comment Share on other sites More sharing options...
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