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Just found out I have CML


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#1 Gail's

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Posted 25 January 2015 - 04:14 PM

Hello. I contacted my pcp a week ago due to ongoing diarrhea & nausea with occasional episodes of vomiting. She ordered some blood tests. I didn't go get them right away as I was busy. Tuesday at work (I'm an RN) I popped over to the lab and had my blood draw. A few hours later I got a call from a medical assistant telling me I had to make an appt with hematology-oncology. I told him he had the wrong patient since I don't have cancer. When he persisted, I asked him to tell me what the reason for referral was. After hemming & hawing he said I had an abnormal blood test.
That wasn't too much help. So I asked a friend/dr to review my test result & the referral. Can't access my own complete medical record myself due to HIPPA laws. She looked online & we both saw WBC of 95,000 and oncology review that said I likely had CML. She gave me a big hug and told me she was sorry. Then she said CML is the best kind of leukemia to have. Whatever.
I told my family that evening and we all sat around in shock and trying to put a positive spin on it. I'm a nurturer so I was being very upbeat. And continued that until a few days later. I'm really feeling a huge range of emotions: fear, sadness, frustration.
I saw the oncologist and she has ordered a bmb to be done 3 days from now. I've never seen one live but am getting freaked out about it!
Could someone share their feelings in the first part of dx and how bad/ok their bmb was? Oh I also want to know if it's a good thing that my WBC was only 95 instead of much higher.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#2 dede5

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Posted 25 January 2015 - 04:41 PM

So sorry this has happened to you! I've had CML for 4 years, but I'm new to this forum. I've been an ostrich (head in the sand) until recently, so don't know a lot of the technical terms. I can tell you my first WBC was 144, and I was in accelerated phase nearing blast crisis. I think it's considered the 'best kind' because it can be controlled with a daily pill. I agree with you, though, because I don't think there is a 'best kind'. I remember so well all of those emotions. I had to see a counselor, and for awhile, take an anti depressant. Except for a few side effects (none of the major ones), I just take one day at a time now. You will probably still be able to live your life for many years, it will just be an altered version.

 

As for the BMB, I've had two so far. Thankfully, the facility I used treated it as a sort of one day surgery. I was given general anesthesia. With the first one, I was down for about a week, and sore for another week. With the second one, I was only down for about two days and sore for another week. I would highly recommend that you make sure whoever is doing your BMB will be using GA. That will take away a major part of your worries. I was more freaked out by the thought of the BMB than I was the cancer itself.

 

There are a lot of people on here than can tell you more than I can. This is just my two cents. Good luck to you!!


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#3 Red Cross Kirk

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Posted 25 January 2015 - 05:44 PM

Hi Gail,

 

I live in Oregon too.  I live in the Portland metro area. My onc is Dr. Chang.

 

I think I've had three BMBs.  I didn't really know what to expect the first time. I only had a few minutes to think about it.  Dr. Chang (who I had just met) explained the procedure to me, gave me a local and went for it.  The sensations he described were pretty accurate. I had planned on going to work after the appoinment but he wanted me to get an ultrasound of my spleen so that messed up the rest of my day. I do recall some soreness for a week or so afterward.  My recommendation would be to not have general, it worked for me.

 

My WBC was in the 60s at DX.  I'm not an expert, but I think the lower the better at diagnosis.

 

I'm probably an oddball because I like to be awake during medical procedures.  I passed a kidney stone many years ago, and would choose the discomfort of a BMB over that experience.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#4 Antilogical

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Posted 25 January 2015 - 06:36 PM

1.  "GOOD" CANCERS:  The best kind of cancer is the one you never get.  Period.

 

2.  BMB:  I've had 2, with local anesthesia (lidocaine) only.  They take about 15-20 minutes.  It all depends on the skill of the technician, and a certain amount of luck.  The 1st BMB was moderately uncomfortable during the aspiration - I got a pretty good twinge lasting about 30 seconds.  It felt like sciatica.  The bone extraction part felt like a lot of pressure.  Throughout the procedure, anytime I made a noise, the technician gave me more lidocaine to make me comfortable.  For the 2nd BMB, AWESOME!!!  They had me laying on my stomach instead of my side, & I think that's the key.  They really numbed me up, and I felt nothing.  The only thing that would have made it better would have been my ipod and a glass of wine.

 

3.  Welcome to the cancer club!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#5 Marnie

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Posted 25 January 2015 - 08:03 PM

I second that. . .there is no "good" cancer.  Doctors, nurses, and anyone with a mouth needs to throw that line in the trashcan.

 

I also second the lidocaine method.  I definitely prefer to be awake during the procedure.  I hate general anesthetic.  Others would disagree.  I've had 2 BMBs.  They were certainly not comfortable, but they weren't that big a deal.  I have heard that an iPod is a good idea, but I sort of like talking to the doctor.  Last time they brought in some interns to watch, along with my husband, who hadn't been there for the first one.  I had told my husband that they used a HUGE hand drill to bore the hole.  It was really disappointing the second time around to see that it wasn't that big of an instrument.  I had sure built it up in my mind. 

 

If I have to have a third one, I'll ride the motorcycle there.  More comfortable than the car. 



#6 Gail's

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Posted 25 January 2015 - 08:15 PM

Thank you all for the encouraging words. I am relieved I won't be in agony. I have the day off work as well as the next day so I'm hoping it will be a lot better by then!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 mlk210

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Posted 25 January 2015 - 09:31 PM

Hi Gail! I'm only about 6 months into diagnosis. I got diagnosed after a routine blood test for my physical. Except my doctor called me up and told me to go right to the Emergency Room. Then the ER doctor confirmed that my white blood cells were in fact 106k said to go home. He got me an appointment for the next day with a hematologist/oncologist, but all he told me was I most likely had a form of leukemia. I was convinced I had 3 to 6 months to live that night and would never see my children grow up. Google was not a good friend that night! When I finally figured out I most likely had CML, it said 3 to 5 years. I think that night will go as a living nightmare with my husband and I. Luckily when I went to the oncologist he told me I most likely had CML and that there is this "miracle pill". It did put my mind at ease after all that the night before. Until I really thought it all through.

 

Anyway, I've only had one BMB so far and it wasn't a picnic, but it wasn't horrible either. I'm fairly certain my doc numbed me a lot for it. I too don't like to be put out for procedures. I told my husband before my thyroidectomy that I'd rather be awake(crazy, I know). For the BMB, they had me lay down on my stomach and I gripped the pillow tight a few times, but all in all, I've had worse pain in my life. I took the rest of that day off and then I was up to my normal routine (which includes twin six year olds ).

 

This is a great forum! There are amazing people here that support you with not only their wealth of knowledge but emotionally too. They've kept me going these past months. As I said I was diagnosed at 106k wbc in Chronic Phase. I'm on 100mg Sprycel. I think that although the side effects aren't great, I struggle more with the emotional side of having this disease than the physical right now. 


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#8 Trey

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Posted 25 January 2015 - 09:41 PM

95K WBC is about average for diagnosis.  I doubt the nausea and vomiting were related, but it got you to do a blood test, so it was useful. 

 

If you want to drive home yourself, just do lidocaine.  If someone will drive you, twilight sedation is a good option.  Take an iPod to distract you.  The thought of it is worse than the actual procedure.

 

Here is some info for the newly diagnosed CML patient:

 

http://community.lls...ewly +diagnosed



#9 garfonzo

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Posted 25 January 2015 - 10:11 PM

Hi Gail, first of all you and the rest of us will most likely pass on from something else besides CML. It takes a while to realize this. I found out the day after my annual wellness exam. The office called and asked me to come in to discuss my blood tests. Crap that's not good i thought. On my way over I got a call from a hematology office to set up an appointment. That's when I realized it must be a blood issue, maybe cancer. I reached my Drs office and he broke the news to me that it looks like CML. white blood was over 550k at this time. I left with a box of medical masks and a printout of CML information. The rest of the day was blur. I had to stop and pickup some groceries but at home I grabbed onto a paragraph in the printout that said nowadays CML is treated mostly with pills that allow us to live mostly normal full lives. Although that was great hope, the next few weeks were full of fear and tears. It is life changing but for me life has changed for the better. Life is good, very good. Oh, my bmb was not at all painful. My Onc is pretty good at it. He did it my first day under a local anesthetic. Lots of pressure and weird sensations. However for a couple of weeks after it was extremely sore at the site like a bruise. There is tons of info to absorb but the odds are greatly in your favor. Know that all of us and many more have gone through what you are feeling now. Get ready, it's an incredible journey.
1/22/2013 initial dx WBC 550k
1/28/2013 begin Tasigna 600

pcr test %IS Drug Dose
7/24/13 2.889 Tasigna 600
10/23/13 2.442 Tasigna 600
1/24/14 2.497 Tasigna 600
3/5/14 2.158 Tasigna 600
6/4/14 1.319 Tasigna 800
9/3/14 0.982 Tasigna 800
12/8/14 0.845 Tasigna 800
3/16/15 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM
11/9/15 0.307 Sprycel 100
1/6/16 0.1 Sprycel 100 - MMR mayo clinic
4/4/16 0.1 Sprycel 100 - MMR
5/9/16 0.1 Sprycel 100 - MMR
6/6/16 0.06 Sprycel 40 - MMR
7/6/16 0.1 Sprycel 40 - MMR
9/12/16 0.09 Sprycel 40 - MMR
11/15/16 0.1 Sprycel 40 - MMR
2/14/17 0.07 Sprycel 40 - MMR
5/16/17 0.06 Sprycel 40 - MMR
9/11/17 0.05 Sprycel 40 - MMR
1/15/18 0.05 Sprycel 40 - MMR

#10 snowbear

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Posted 25 January 2015 - 10:15 PM

I was just diagnosed this past November.  The thought of the BMB was way worse than the actual procedure.  I drove myself but the doctor gave me some Fentyl by IV and Lidocaine.  I had to wait 2 hours afterwards before I could go home, but by the time doc came to check on me, nurses took vitals, I ate lunch, and waiting on discharge papers, I wouldn't have gotten out any sooner w/out the Fentyl.  My Hema/Onc is recovering from hip surgery and she's still not up to doing BMB's herself, so mine was done in Radiology under the CT scan.  I was on my stomach and doc said that is a more comfortable position than lying sideways.  

 

The doctor used a power type drill instead of a manual tool so getting through the bone was very quick.  The aspiration caused cramps, but by the time I caught my breath, it was over.  Afterwards, I had no soreness.  I even stopped by the grocery store on my way home.

 

Try to relax and good luck and let us know how it goes!



#11 Kittywatkins

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Posted 26 January 2015 - 06:20 AM

Diagnosed in May 2012 WBC 112. I've had 2 bmb. Not sure if it was the Onc or that I've had bone pain even before diagnosed. But the first was horrible and the second one I passed out. However dentists give me panicked attacks. Next bmb if I get one I definitely want to be out for the count.

#12 hannibellemo

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Posted 26 January 2015 - 07:12 AM

Gail,

 

Welcome to the group, so sorry you're here, but glad you found us!  :)

 

My WBC was 345k at diagnosis and my platelets were 1.25 million. I was in chronic phase. I've only had a BMB under concious sedation so I can't help you there but, you might want to know I'm going on six years and have only had 2 of them, one at dx and one at 1 year. Unless you get involved in a trial, and that depends on the trial protocol, you probably won't have many.

 

I was surprised at the discomfort afterwards, but realized that when you have that many WBCs coursing through your veins and they all rush to the site of the injury you've got quite a crowd! They did a bi-lateral BMB (don't know why) and I felt like I had two tennis balls, one on each hip. Very uncomfortable to sit or lie down for a day or two. That's just me, your mileage may vary! The 2nd one was not nearly as uncomfortable after.

 

At any rate, I'm glad you posted, we have many knowledgeable people on here and we have a lot of fun. We may have cancer but this not a grim group.  :D

 

Good luck!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#13 klf2013

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Posted 26 January 2015 - 09:31 AM

Hi Gail,

I am an RN too. First, I am not happy with how you were told!!! So insensitive of the doctor to have a Medical assistant make the call!!!

 

I was diagnosed exactly a year ago. Went in for my hem/onc appt and he told me I had to have a BMB to confirm dx of CML. The bmb was much more anxiety producing than the diagnosis at first. I will say, it wasn't as bad as I had thought. I had another nurse there holding my hand when there was a great deal of pressure, but otherwise the doc used a local anesthestic and that was it. I think Versed would be a great addition, but for me, a general would be overkill.

 

I am guessing your nursing background will have you keeping the scary feelings to yourself and "taking care" of those around you by staying upbeat and not sharing your own concerns.  I get it. It is in our DNA to be that way. Make sure you do give yourself a place to voice the scary stuff. This forum is great for that. The emotions will come at you at the weirdest times. But you will move through them.

 

Lastly, I will add...professionally, you now have another level of experience to empathize with your patients on...that is being a patient yourself.  :)



#14 pammartin

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Posted 26 January 2015 - 03:16 PM

Gail,
Welcome. Every time I read a post from someone who was just diagnosed I remember those first months after I heard the words leukemia and cancer. The range of emotions are astronomical, I am not sure I could describe everything I felt or experienced. What I can say is I empathize with your situation, especially the note about being upbeat for others. I believe it took me longer to process and accept because I constantly supported my family, trying to make everything ok for them. I have no great words of wisdom, but in time you will learn to cope with the disease and the changes in your life. The beginning is always the hardest, as you work through the stages of acceptance, use this board to vent, cry, or scream. There is always someone ready to listen and support. You have found a good place.
Best wishes,
Pam

#15 Melanie

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Posted 26 January 2015 - 04:55 PM

Hi Gail,

 

So sorry you have had to find this forum, but I hope you feel better now for having found it. :) It's a huge emotional and educational support system with the most wonderful people. They all make you feel welcomed, comfortable, and reassured even when the scary thoughts start to build up your anxiety.

 

About BMB, I've had 11, with my next one coming up in March. Don't worry I'm the exception, not the rule. I've had some difficulties and am in a clinical trial, so the BMB are necessary. I would like to share some of my experience with you, hoping it will help you. 

 

My first one was when I was in the hospital being diagnosed and just had a local.  The doctor was not very experienced and only did BMB once or twice a year. Did not go well and was very painful, so the next one was with GA and afterwards, I decided that was the only way I was ever going to have it done. On my 3rd one though, The doctor who did the procedure was an idiot and not very focused. When I woke up, I was really sore and they told me they had messed up and not gotten enough, so had to do it again and that I might experience some pain due to that. Well they got that right! I had my husband check out the area and it was all black and blue with several puncture areas...think they had to go in more than twice.  Told my hem/onc that no way was I ever having another BMB...he would just have to figure my treatment out some other way.  

 

By the time I needed my 4th one, I was at MDA and they don't do GA there. I was terrified! Turns out there was no reason. They have a whole department where that is ALL they do, so they're very good about making you comfortable.  They give you plenty of local so you're really numb, stop if you feel anything and give you more. You feel pressure and sometimes the suction from the aspiration is uncomfortable, but it's over before you know it. Afterwards, I'm always sore for a few days, but not enough that it alters anything I want to do.  I no longer fear them...don't love them, but I can definitely tolerate them, even though the scar tissue that's building up is making them a little more uncomfortable each time. I just ask for more drug please and have a glass of wine at lunch before we fly home. :)

 

So from my viewpoint, I would say to make sure whoever is doing it is "experienced", regardless if you go local or GA.  Someone who does them "regularly".  You have to be your own advocate and with your experience as an RN, hopefully you'll have connections enough to find out their level of experience. After having had good and bad procedures under both local and GA, I vote for local because of the time involved. The GA is usually 3-4 hours at the hospital, then kind of groggy rest of day.  With the local, once you're in the room, you're usually walking out within 20 minutes, feeling fine. 

 

Like most have said, the though of it is usually much worse than the actual procedure. Hope your results show that all you need is to start your TKI drug and be on your way to remission. Best to you and let us know how it goes.

 

Melanie

 


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#16 Gail's

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Posted 26 January 2015 - 10:54 PM

Again, thanks to all of you who replied. I'm very glad I found this site!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#17 AllTheseYears

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Posted 28 January 2015 - 04:09 PM

I'm sorry about your news, and I'm also sorry that your doctor replied that CML "is the best kind of leukemia to have."  Really?  I certainly didn't feel that way at my diagnosis and I'm fairly sure you don't either.  There's NO best kind of cancer!  Though your doctor might have been well meaning, that remark is offensive.  Sensitivity chip missing?

 

My CML diagnosis was almost 12 years ago....so your chances of thriving, not just surviving, should be quite good...if my record and the record of other CML survivors are any indication.  I'll say though that you should be ready to advocate for yourself and use every resource you can find to stay informed about CML.  Just in case....you also should be prepared to search for a new, specialized oncologist if you ever feel uncomfortable or talked down to by your first oncologist.  I switched several years after my diagnosis; I think the switch was the best thing I've done during my survivorship.  Believe me, experienced blood cancer (only) doctors have more skill at BMBs.  After several years, my hemo/onc said he wouldn't ask me to have one unless he really needed extra information about my case. Sophisticated blood test often provide what's needed.

 

Your fear and anxiety are normal. Hang in there. Best wishes to you. 



#18 Gail's

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Posted 29 January 2015 - 03:20 AM

Bone marrow biopsy done & was painful but about what I expected. They couldn't get enough marrow since it was clotting every time they got a sample. Pretty common, I hear. So they took a second bone core and will run different tests.

Based on my pcr of 37 I will start gleevec in two days. Dr told me the pcr makes her feel sure that it's cml so might as well start treatment. The results of the bmb will make it 100% certain diagnosis as well as telling more about what phase I'm in. Will keep everyone posted.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#19 Darlene_Jack

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Posted 29 January 2015 - 09:10 PM

I'm sorry to hear about your diagnosis but this is a great place to come. Lots of information n nice people. Take care
One breath at a time

Darlene jack...




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