28 replies to this topic

[JackRyan8311]

I was dx last week with CML. I have my Bone Marrow Biopsy Friday. Follow up appt. Is 2 weeks later. Just wondering will I be able to start my treatment then. Curious on other people's time frames.
Background:July went to PCP with upper and lower GI issues. pcp thought gallbladder possibly. Told me change diet and exercise. Also took blood for CBC, show WBC 20,000..two weeks changed diet etc lost 8lbs felt good but had WBC 22,000...waited two more weeks lost 7lbs felt better but WBC up to 26,000, reffered to Hemo/ONC but couldn't get seen til Sept 4th.had ultrasound of abdomen small gallstone but no issues, Spleen was showing 14cm but no pain or issues. continued monitoring cbc stayed the same lost 10lbs feeling good, all GI symptoms gone.. CBC done 9/4 wbc up to 32,000...9/4 Hurricane come through appt changed to 9/12..onc does cbc and test PH+..WBC 46000 and positive for cml.

[rcase13]

Sorry to see you here. But glad you found us. Some really great people here that have help me through the tough times. You were diagnosed early. Your off to a good start.

[JackRyan8311]

Thanks, I read alot of post here before signing up and it has helped alot already

[Jan0080]

It will take perhaps a week for your first prescription to be delivered to you as they need to approve it - no hassles afterwards. I am happy with Sprycel but your Oncologist will decide for you. This is just a pill a day for at least the next three years. Your life expectancy will not change. Thank goodness this didn't happen 30 years ago. Welcome to the club! Our most famous member is Kareem Abdul Jabbar. If you are going to get cancer this is the one to get because it is absolutely the most understood. Where do you live? How old? I'm glad to share as this is something that is never far from my mind. Trey and Scuba are the most knowledgeable active posters here. Best wishes!

Fred aka Jan

[JackRyan8311]

Thank for insight and the welcome, I'm 43 and live in Atlanta, Ga. I feel I'm being a little naive or over positive but I feeling no worries about getting worse just anxious over getting started and dealing with any possible side effects from whatever treatment I am given.

[Jan0080]

While I don't know who the top Drs are there, it's a major metropolitan area which means there are good hospitals and good specialists.  You actually are better with a younger Doc as Gleevec only was available 20 years ago and Tasigna and Sprycel have only been around for 10 years.  You ARE allowed to ask your Onc how many patients does he/she have with CML?  Freaking out won't help.  Be self aware but you will be okay! 

[chriskuo]

Has your onc indicated which drug he is going to prescribe?

Sprycel is definitely stronger than Gleevac but also has a higher risk of pleural effusion.  I was started on Gleevac 7 years ago, shortly after Sprycel and Tasigna were becoming first-line options.  I would probably still recommend starting with Gleevec to minimize the chance of a pleural effusion early in your treatment.  However, if you slip behind in making complete cytogenetic response or major molecular response, there is no reason to delay switching.

 

If your onc does not specialize in CML, be prepared to request getting a second opinion from a specialist if you fall behind any benchmarks.  I have tried all 5 approved drugs and finally found one  that got me below MMR 5 years after dx with manageable side effects.

 

Hopefully, you will not be switching drugs because of side effects, but sometimes it is better to switch drugs than trying to manage difficult side effects.

[JackRyan8311]

I don't know much about my Onc unfortunately. I was referred by my PCP in the beginning because they are all part of the same medical group. The practice has a good reputation based on what the radiologist who did my ultrasound said. However, Winship Cancer Institute at Emory University here in Atlanta is the best. I registered with them yesterday and will be going to see an Onc specialist there soon. I was.told it could take a few weeks so continuing with current onc to began treatment. This current onc seems like a generalist but I will definitely be asking him some more questions. In addition, his admin staff is horrible, I was supposed to have been scheduled for my BMB after dx but they intially just made a general office visit, luckily I called and they got it fixed but not after much confusion which doesn't inspire alot of confidence.

[scuba]

Jack - Welcome to the club you never wanted to join. There are a lot of great people here and you will likely find the answers you seek.

 

I suggest a couple of references you may not have seen yet:

 

1. http://treyscml.blogspot.com/

 

Trey's CML blog linked above is a good summary with answers to questions you will likely be asking. Trey is not a doctor by his own admission, but he knows more than about 99% of the Oncologists practicing today. He will gladly answer any question you have posted to this forum.

 

2. www.nccn.org/patients/guidelines/cml/

 

The NCCN (National Comprehensive Cancer Network) guidelines are an excellent resource on CML disease and treatment protocols. It will give you information you can measure against what your doctors tell you. You should use this reference so that you can ask informed questions of your doctors especially if they are deviating from the protocols. 

 

CML is a very treatable disease. The key is to find the best drug that works for you with the least side effects. Over time you will learn that there are many treatment pathways forward that will become somewhat unique to you. Your job is to find what works best. The more you learn the more you will be able to chart your own path.

 

All the best on your journey. 

[JackRyan8311]

Wow, Thank you for the great resources. I just got a call from Winship Cancer Institute at Emory Univ. They can see me next Wednesday so I can start with them. Any advice how I should I handle switching Onc? I have BMB Friday. But follow up with current onc is not until Oct 20th.

[Jan0080]

I never had a BMB. The genetic test for being Ph+ really is the definitive test. I had one blood test Dec 9 and my Dr. had me re-take it on Dec 16th. In addition to elevated white cell counts, I had mylocytes that were not zero. I was at the Hematologist the very next day.
Your Doctor should not be offended that you are headed to Winship, it is your body, your life. Opinions on the necessity of a BMB may vary here but that test can be done at Emory if they feel it is necessary. Hematologists love CML patients. We survive! Just call and say that you can't make it tomorrow and that you are getting a second opinion. There is nothing improper about that.

[scuba]

Very simple - go visit the cancer institute and begin the relationship. Find out now who you will be seeing at Emory so you can research the doctor's area of expertise. They will likely want to do their own testing (bone marrow and blood draws) so be prepared for that. If you have all of your reports and tests in hand, no need to tel your primary Oncologist know anything just yet. If you don't, you will need to ask them for all of your records be sent to Winship or given to you (ideally both). You don't have to explain anything - it's your life, but telling them you are getting a second opinion on treatment options is fine.

 

I switched doctors early in my journey also when it was clear to me my primary Oncologist had little experience with CML. I went to M.D. Anderson and became a patient under Dr. Cortes. I still use my primary oncologist for drug prescription refills. They're happy to have the business. You may find you work with both institutions - one for routine, the other for specialty. Once you get your CML under control (and you will) and your testing becomes repetitive (i.e. same low acceptable result test after test), you may find that your primary oncologist can take over the routine. If you have to travel far to Emory that can be a factor in wanting someone close by.

 

In CML - it comes down to routine blood tests once the disease is under control and side effects are minimized and managed. Report here your progress (see forum members signature lines for their own timelines) so you see how you are doing in comparison. I have a suspicion you are going to be a quick responder and be just fine.

[JackRyan8311]

Update: Emory said I could do the BMB if I wanted. So I'm going in the morning that way I will have my results shortly after I see my new onc. Also I will know where Im starting ? And where I will end up 0.0000!
Thanks for all the help and advice, the insight it's given me awesome perspective and unfettered calm.

[tiredblood]

Sorry you have CML, but glad you've joined us as we all navigate this CML journey together. I was initially diagnosed with a single PCR test and later had a bone marrow biopsy to confirm diagnosis, ruling out other conditions.
Please keep us posted.

[cmljax]

I was like a deer staring in the headlights and obviously scared when I was dx'ed a year ago.  A lot of folks on this site have already given you a lot of good advice and resources.  All I can tell you is that I would have been lost if I had not found this site. The people in this community are amazingly giving of themselves. I have been the beneficiary of that kindness many times.  I have learned things here that I never would have learned anywhere else.  And perhaps most importantly, this community gave me the courage to advocate for myself with my oncologist for dose reductions when my side effects were very bad.

 

Look at my signature and if you have any specific questions feel free to send me a private message.  Good luck and let this group be your guide.

[Trey]

Jack,

You were diagnosed very early, earlier than most of us here.  So no real hurry to try to do anything or speed up the process.  It will work fast enough.  Your BMB will likely show 100% because it only tests for the higher order blood cells, which will likely all be leukemic.  The PCR may show a much lower percentage since it is a test for DNA fragments which you can read more about that later.  Definitely want to do the BMB since it tests for issues which do not show up anywhere else.

[JackRyan8311]

Thanks Tre...Had BMB this morning, they did a CBC beforehand as my current onc didn't send my labs from last week nor did he tell hem why I was there.when I told them I was diagnosed with CML they were surprised. So my WBC were still as was most other things, my baso actually went down but lymphs and neutrophils all up. But like you said I can see from posts I have found it early. Ready for results and seeing new Onc. I will post my results of BMB as I'm sure I will have questions.

[JackRyan8311]

Update: still waiting on my BMB reaults but met with my new Onc at Emory Winnship CI, He was great. After much discussion and education, I will be taking 400mg of Imatinib. Hopefully side effects will be minimal. but I am feeling happy now that a plan is in place and I can see the road ahead. Just wanting on Insurance Company to get my meds and then I begin. Any advice for taking Imatinib?

[JackRyan8311]

Update: still waiting on my BMB reaults but met with my new Onc at Emory Winnship CI, He was great. After much discussion and education, I will be taking 400mg of Imatinib. Hopefully side effects will be minimal. but I am feeling happy now that a plan is in place and I can see the road ahead. Just wanting on Insurance Company to get my meds and then I begin. Any advice for taking Imatinib?

[Buzzm1]

Any advice for taking Imatinib?

After suffering the nausea that Iamtinib is so notorious for,  I discovered that taking Imatinib a full hour after my heaviest meal of the day (dinner, in my case) almost completely eliminated the nausea.  Good Luck to you Jack.