Newly diagnosed

Hi, my name is Sheryl and I am 49 and been diagnosed with Cll for less than 1 year. I am in watch and wait and I have 17p del. and am currently seeing a hemotoligist/oncologist every 3 month. Should I be seeing a doctor that specializes in CLL? Or wait until something changes. I am at stage 0. I also live in the Chicagoland area.

Thank you! You all seem very nice on this site! :-)

26 Replies

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  • Welcome Sheryl; sorry you needed to join, but I'm glad that you feel that you are joining a nice group. :)

    You are definitely better off seeing a CLL specialist than a general haematologist/oncologist, though if you get on well with your current specialist, you might be able to have your local haematologist/oncologist work with your chosen CLL specialist. If you don't have any physical symptoms, there may be no point in seeing a CLL specialist right now, but it would definitely be advisable when you local haematologist/oncologist states that you are approaching the need for treatment.

    You are well situated for specialists, being between Mayo Clinic in Minnesota and Dr John Byrd at Ohio State University.

    You've done well finding out that you have 17p del as chemo-immunotherapy doesn't work well with that marker but new non-chemo treatments do, so you've already avoided the risk of treatment that wouldn't work for you. By then again, you are stage 0 and treatments may not even be needed.

    Neil

  • I concur with AussieNeil and would recommend John Byrd at Ohio State U. He has been very active in running Ibrutinib (BTK) and Idelasalib clinical trials. Since you're a del-17p you are eligible for either.

    Fwiw, I've been on Ibrutinib for 3-1/2 years now and it's worked great. All blood parameters are in the green zone and no side effects except a little mild diarrhea the first 3~4 months.

  • Hi my name s Doug from united kingdom hi have 17p but hive been trialing a new Aanti cancer drug called apt 199 in Manchester in the therd week of trail I was in remission why don't you as your consultant to put your forward for a trail hope this works

  • We're you on Ibrutinib before the abt199?

  • No first time round was on rutuximb then came back after 18months then went on campath failed again so they did a special test and found a mutation cell that would not respond to chemo so was going to have bone marrow transplant Ghent got phumonia that's wen they put me on the trail for apt199 in remission now seven month s so still working ok doug

  • I was under the care of a general haematologist fairly locally for seven years. After my first year of treatment when I was in remission I visited a top CLL doctor. I switched to a more central hospital only after my local haematologist ran out of options!

  • Hi Sheryl,

    Getting a consultation with a CLL specialist is very important particularly since you know you have a 17p deletion. While 17p- is not a good marker to have, it does not guarantee you will have a rapidly progressive disease but it will mean more care in choosing a treatment, if and when it becomes necessary. CLL is a mercurial condition and everyone has a unique set of characteristics that define it. This is a recent quote from another woman on another Forum. "... I have been fortunate enough to live with an indolent form of the p53, 17p mutated form of CLL since the 1990's." She goes on to describe her blood work which looks better than mine and I am in a near complete remission with so called "good markers" after a very aggressive disease course. You just need to insure that you are guided by CLL knowledgeable doctors who have experience with the complexities of CLL.

    Seeing that you are relatively young and female I would urge you to be very wary of some doctors who overuse CT scans. A CT scan is not necessary for CLL diagnosis and CT scanners vary greatly in the amount of radiation a patient may get. Radiation from imaging technology is cumulative so be sure a valid reason is given before you allow yourself to be scanned. I have written a series of essays on CT scanning which you should have access to in the archives. Here is the last in the series to give you a simple way to asses if you are getting the latest low dose radiation from any necessary scans you may have in the future.

    CT scan series part 15 – generic CT scan assessment (Please copy)

    What can you, the patient, do to find out if your medical facility is complying to the highest standards for radiation dose reduction and safety from CT scanners?

    Virtually all US facilities may report use of “Low Dose” software. All CT machines now manufactured and sold in the US are of the helical design and capable of supporting the latest version of Low Dose software. Older CT scanners and earlier versions of software remain problematic at some institutions and I will almost guarantee that your doctor will not know or admit to knowing the status of CT technology at their institution. This is due in part to the number and variety of machines. As one example; At the OSU Medical Center they have currently 14 CT scanners that will be increasing to 17.

    The term “Low Dose” is not specific enough and various manufacturers of CTs are continually leapfrogging better machines into the market for me to recommend a specific machine. “The soul is in the Software” and I believe I have reduced the low dose and safety issues to 4 questions you will want answered in the affirmative the next time you are scanned. Ask the following at the time of your being scheduled or inform your scheduling contact that you need to be assured of the following:

    1)Does the scanner use iterative image reconstruction software?

    2)Does the Scanner I will be scanned on have kV modulation? kV stands for kilovolt

    3)Does the Scanner I will be scanned on have mA modulation? The mA stands for milliamp. Note: One of the basic parameters affecting radiation dose for a smaller patient is in the hands of the CT operator adjusting mAs. For those who have a need to know more about kV & mA - en.wikibooks.org/wiki/Basic...

    4)Does the Scanner I will be scanned on have organ-based modulation? scitation.aip.org/content/a... & ncbi.nlm.nih.gov/pubmed/225... The organ based modulation capability is particularly important if you are a younger patient or plan on living, secondary cancer free, over 20 years after scanning;-)

    Not all organs are equally sensitive to radiation and the “organ-based modulation” feature insures lowest radiation to the most radiation sensitive organs, i.e. breast and gonads, eyes and thyroid.

    You now have a simple way to find out if the CT scan you are about to get is giving you the lowest reasonable dose of ionizing radiation irrespective of the Brand of CT scanner and always remember: Ionizing radiation is cumulative and demands justification for its usefulness.

    Updates will follow if I learn anything that requires modification of this recommendation.

    WWW

  • Sheryl,

    The most important thing you can do to improve your odds is put together your care team with a CLL expert at the helm. I don't know the docs in Chicago but at OSU in Columbus, there are John Byrd and Joe Flynn. Both are super.

    Brian

    bkoffman.blogspot.com

  • Thank you all for your responses!! I do have an apt with Hemotologist/oncologost in two weeks. As I speak I have an enlarged lymphnode. My WBC have been going up over the last few months. I will be looking up the doctors that you referred and figuring out a plan. Do many of you travel out of state to your appointments? Today it feels a little overwhelming figuring out which doctor to go to for which problem. Thanks again this is very helpful!

    Sheryl

  • Many CLL patients in the USA travel out of their state for appointments with CLL experts, which makes sense given that there are many more states than there are centres of excellence for CLL care. One of the centres of excellence for CLL, the Mayo Clinic recently published a paper showing a clear and significant improvement in survival time if those with CLL visited a CLL expert, which makes sense. CLL may be the most common adult blood cancer, but it is still rather rare, so it definitely pays to go to someone who has plenty of CLL experience under their belt. How the disease presents itself varies so much that you really need to have access to someone that is more likely to have seen someone with unusual CLL related problems.

    Also, track your Absolute Lymphocyte Count, not your WBC, which distractingly includes the counts of other white blood cells.

    Neil

  • Thank you Neil! I will look into the Mayo Clinic and try to figure out the Absolute lymphocyte Count.

    Sheryl

  • Tate Shanafelt and Neil Kay are both super at Mayo.

  • Thank you so much! I really appreciate your input. Have you heard anything about the doctors at University of Chicago, Wendy Stock?

    Sheryl

  • I have not. My wife and I will be in Chicago the last week of Feb and the first week of March as our daughter is expecting. Perhaps we can connect.

  • That would be great. Let me know as it gets closer.

    Sheryl

  • That is my doctor and she is Wonderful! She works with a team of doctors. U of C is great and close to home!

  • Thank you DKStitches. I have a referral to see Dr. Ma at Northwestern in June. I'm going to give her a try. I live in Buffalo Grove. Where are u at?

    Sheryl

  • I live in Palatine! Glad that you are seeing a specialist. I was diagnosed 7 years ago and had been given all of standard chemo treatments. When my oncologist ran out of treatment plans he referred me to Dr Wendy Stock at the University of Chicago. I went through a rigorous testing and was put in a clinical trial. I have had good success. You are at the beginning of you journey, ask a lot of questions and hold on to your hope. I am close if you ever what to talk.

  • Oh my gosh that is funny! If u ever want to meet at panera to talk that would be great!

    Thanks,

    Sheryl

  • Hi - I am in Elmhurst - dx 2011. Wrote a bunch of stuff about myself in a post below - you can read it if you want (it bores me). Nancy (https://www.facebook.com/nancy.zurawski) is also local and my family and I ran with her in the Jim Gibbons 5k in Chicago in Team Bad Blood - contact her if you and Sheryl want to join us...

    hmmm was trying to reply to DKStitches...

  • I can't answer for Sheryl, but I am still in recovery from 3 months in the hospital and major lung surgery. I do appreciate the offer and wish you and the team well in training and the run.

  • Hi Sheryl - I used the HealthUnlocked feature to look for people who live near me - kind of creepy actually but oh well. I have been seeing Dr. Ma for over a year since she took over Dr. Steven T. Rosen's patients when he left for California. She is AMAZING - ask her anything you want - she is extremely patient and loves to talk about CLL (at least with me - I have read tons of stuff and have zillions of questions). I did a clincical trial with her last year for a CLL vaccine. I am borderline unmutated, borderline ZAP-70 positive, (del) 13p dx age 49 10/2011. I live in Elmhurst so near you. You should be able to get Ibrutinib as front line treatment when you need it or another treatment option if one is available.

  • Hi ChicagoDave,

    I am looking forward to meeting dr Ma. I have seen a couple doctors in the past few months because I was told I needed treatment. I have been retested. I have del 13p and am highly mutated. So I have learned a lot from these doctors and this site. I am thinking about walking the Gibbons Leukemia race. I was not able to find the link on fb.

    Thanks

    Sheryl

  • Yes u told the dr to go have blood test 6 mouth two week but my dr did tail me the hospital told me no 2013 l had this was told by my dr ok from Carol from peacehaven

  • Hi Sherlymcafee!

    I also live in the Chicagoland area and have Cll with a p17 deletion. Actually, we are lucky because we have we have a great resource here! The University of Chicago has a renowned team of doctors specializing in CLL. They also have cutting edge research being done. I would recommend them!

  • Hi Sheryl - sent you a private message...

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