Hello, everyone! My name is Christina, and I was diagnosed with CML about 2 weeks ago. I believe I have had it for a couple of years, but it was never detected because the only time I went to the doc was if I was sick and therefore a high WBC was expected. It was discovered by chance when I had routine blood work done by my psychologist when I was NOT sick and it still showed a high WBC. I had to convince my MD to look further into it, because he wanted to write it off as having some kind of bug I wasn't aware of. After sending blood off twice, I finally got referred to oncology. Onc took MORE blood (sigh) and it came back with the abnormal ACR-ABL and all the other indicators of CML. I looked at my results and the percentage of immature cells was 14% but he told me I am in the chronic phase. Again, my reading tells me different. But he did not do a bone marrow and says he won't ever. Is that the norm now? Everything I've read about CML mentions a biopsy. He also took about 5 minutes to tell me I had cancer and was so rushed I didn't have a chance to ask any questions. I am on 400mg of Gleevec now, which makes me EXTREMELY sick every time I take it. I am thinking I need to go to another oncologist and possibly get a second opinion. I wanted some other CML fighters to give me their opinions....
Newly diagnosed and full of questions...
Posted 29 November 2011 - 07:52 PM
Hello! I was diagnosed on 11/14 and am also in the chronic phase. I had a bone marrow biopsy. Be happy you didn't. Even being knocked out I was in pain for 2 weeks after. I also recommend you MAKE SURE they knock you out for it. Not to scare you but I've heard it's pretty horrible without that. Anyhow, I would see another dr. He doesn't seem to care much and that's not good. Also, I take Tasigna which is a different drug that does the same thing as Gleevec and I have no side effects at all. They have to do weekly EKGs because it has a chance of causing serious heart problems but so far I'm ok. Tasigna is really expensive ($8,000 a mth in my case) but hopefully insurance covers it. I don't have any insurance and am working on getting Medicaid. For now I am on the free 3 mth. trial of the drug. I don't have much info on CML but this board is great and everyone always makes me feel better. It sounds like we have a pretty survivable leukemia and should live normal lives. I wish you the best!
Posted 29 November 2011 - 07:59 PM
Hi Christina. First of all welcome. I am new to this site, also, so can't really give much advice except to say I don't understand why your onc. didn't do a BMB. I thought you needed that to be dx. We have a resident expert, Trey, as well as many other people who I know will respond to you with great advice. If you're reading this. Trey, don't you have to have a BMB to be properly dx.? Christina, although I can't offer you much medical advice I can offer you lots of support and virtual hugs. Hang in there, you are not alone.
Posted 29 November 2011 - 08:00 PM
You need to have a BMB. Your doctor should be following NCCN guidelines, and if he is not following them, you need to find a new oncologist. BMBs are very different for different people. Mine have been a piece of cake. I simply have local anesthetic. It's a little uncomfortable, but not a big deal. Others would disagree with that, as their experiences have been different. My recommendation is to bring an iPod and earbuds, and keep your butt muscles relaxed. I don't need the iPod, but others have recommended it. I like to talk to the doc and know what's going on. I like to see the samples and understand what's happening. Maybe I'm weird. Don't be afraid of a BMB, because it might be no big deal for you.
Posted 29 November 2011 - 08:13 PM
Hi Christina, Welcome! Firstly I concur with what others have said and don't be too afraid of the BMB. Does anybody have the link to the NCCN guidelines?
Secondly as you are probably going to be taking Gleevec at least for a little while longer are you taking it with sufficient food? Are you able to dose split - morning and night.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 29 November 2011 - 09:26 PM
You can google NCCN Guidelines and then print them out. Bring them to your next oncologist visit and be sure that he/she understands and follows them. You need to take charge of your illness and not rely on your doctor. You are one among many patients that he/she has. As someone on here said (I think it was Lucky). . .your doctor will remember your conversation for 15 minutes. You will remember it for 3 months, until you see him/her next. It's important that you know the NCCN guidelines and that you get copies of all of your test results. CML is a disease that doesn't have to change your life drastically. You will find your new normal and live with it. But don't rely on your doctor to know what's best for you. Find out for yourself and participate in your treatment.
Posted 29 November 2011 - 09:31 PM
A person can be diagnosed as having CML by using only a FISH or PCR test instead of a BMB, but that is poor practice. The BMB can see issues that no other test can (additional chromosome abnormalities, true blast count, marrow fibrosis, marrow cellularity, etc), so it is an important part of diagnosing the CML patient. You mentioned 14% immature (blast) cells, which is an issue that needs to be assessed, especially if that is a blood blast count. Only a BMB can properly assess the level of blasts since they are primarily located in the marrow, not the blood.
So if it were me, I would find an Onc who understands (and respects) proper procedure and follows it. There are good reasons why the BMB is required for a proper diagnosis. It helps assess the real status of the patient and determined if high risk factors are present. No other test can do that.
Posted 29 November 2011 - 09:38 PM
HI, I WAS Dx with cml in 2005 and yes I had a biopsy in 2005 here in Indiana my home state and also one at MD Anderson Houston Tx. General most people say they do not have a problem with BMB I hate to scare you, for myself I will not let them touch me again for a BMB. But then I have chronic bone pain and go to a chiropractor and do physical therapy. The first time I had the BMB i had an IV so I didn't feel it, but then when the med's worn off I was on mom's walker for a week. The next year I had the BMB done at MD Anderson Houston Tx. even without special med's and the pain lasted longer then the first, so I guess I am one of the exceptions to the rule. Again the doctor said most patients have no trouble, but my pain was unbearable, never again for me!!
Posted 30 November 2011 - 09:03 PM
Here is the link! I found it to be most helpful. I would definitely find a different doctor. I was diagnosed in May 2007 and my doc never did a PCR test. I knew nothing about it until I read it on this board. Then I found the guidelines, printed them out and gave them to my doc. I switched doctors after that.
Posted 01 December 2011 - 11:09 AM
Rocky start there Christina... and as folks point out it is good to have an oncologist that knows his business and can affirm your situation.
1. You may know that "many" (even most) people being properly treated for CML live out their "normal" number of years (whatever that may be ;^)
2. The 'news' can be emotionally hard or even devastating. But "normalcy" can return and usually does aside from taking the Meds.
3. Gleevec is NOT the only medication but is often the starting place. It is known to cause nausea, take with "protein" (my experience) and water (lots) and
a decent amount of food. Most take 400 at once, some split it. Never made any diff to me. I get headaches!! Even with food... but 'staying busy' often overrides
the recognition of the headache. Some skin eruptions can occur (mine on leg, like little blisters) and often do. Also my toes (weird as it seems) have become
stubby or lets say slightly misshapen and my Oncologist (at UCLA, CA) said it was not unheard of.
4. Exercise, activity, occupying the mind all contribute to better feelings of well being.
5. People who do not have cancer HAVE NO IDEA of how it feels and often can only offer platitudinous comments. Understand they mean well but I've basically
avoided speaking to folks (aside from a supportive wife) about my illness. We have a close friend who has CML and that is interesting and helpful. Two or more, ya know.
6. Do a search for a contributor named TREY - he is full of knowledge and very helpful. He's one of the educated folks who does a lot of research and he can be
counted on to be pretty accurate in his comments.
7. Hang tough!
Posted 01 December 2011 - 07:23 PM
I will definitely be asked to be sedated if I have to have a BMB, as my pain tolerance in very low...I can't even go to the dentist without gas! And yes, I do believe I will be switching doctors...I really feel like I need to, especially now! As for the Gleevec, it is still making me very sick so I'm not sure what they are going to do about it. The only thing that helps is 50mg of phenergan, but then I cannot function the next day I am so happy I found this board!
Posted 01 December 2011 - 07:25 PM
Yeah, Trey responded that the BMB is standard for dx of CML. My onc said he doesn't do them for CML, he just goes by the blood...which is appearing even more to me to be bad practice. I do believe I will be going to a Universtiy Health Care System, probably in Greenville, NC. Thank you for your support! I am still having a hard time accepting the whole matter, and I have not told my children. I don't feel like I should unless it is absolutely necessary, you know?
Posted 01 December 2011 - 07:27 PM
Yes, I am definitely switching docs. I have a feeling deep down that I am actually in the accelerated phase, as I have more of those symptoms and I have for a while. And as for pain, they will have to bring on the drugs...I can't tolerate it at all! I've learned in school that pain is individually perceived by the individual, based on past experiences with pain...and I have HORRIBLE past experiences. Hopefully my new onc will be understanding!
Posted 01 December 2011 - 07:29 PM
Thank you! Yes, I am sure to eat a sufficient amount of food when I take it but I am vomiting it up within 30 minutes. I have tried taking it when I am going to sleep, with anti-nausea meds, everything I can think of and I always vomit. My current onc did not mention splitting them, but I will definitely ask!
Posted 01 December 2011 - 07:32 PM
Yes, the 14% was a blood blast count. The onc didn't explain to me what any of it meant, so I researched it. He wasn't very open to me and I was already in shock and my Mom was there crying, so it was just a big mess of an appointment. I am most definitely going to another oncologist, as soon as I can get an appointment. I am on Medicaid now, so I am not sure of how the referral procedure will work in this situation but I will make those calls tomorrow. I personally feel, deep down, that there are more issues going on than what he's telling me. I have been ill for a while and I have actual symptoms of the disease, some of which are pretty intense. I will keep you updated! Thank you!
Posted 01 December 2011 - 07:33 PM
I refuse to have one without meds! I just can't tolerate pain that well...AND I'm terrified which makes it worse! I will find an onc that is more empathetic and willing to work with me on this
Posted 01 December 2011 - 11:36 PM
If you're vomiting it up everytime you definitely want to be on a different drug. I have vomited it up twice, due to insufficent food with it. Felt great straight away once it was out of my stomach, but it meant I missed my dosage for the day as I didn't want to try it again.
Posted 04 December 2011 - 10:00 AM
Hi, I too amfairly new to cml, BUT, I would not be concerned about not having a bone marrow biopsy. I read the web site about diagnosing cml. To me it staes that blood work MAY not show everthing. I have not had one. I also thought that I was in a later stage until the Sprycel brought my counts in line and I began to adjust to the meds. The first few weeks were the worst. After that I started doing better. I actually ended up in the hospital before starting meds because of an intestinal blockage. I was swollen internaly, but I went down in 2 days and I was released. I am 9 weeks into this and doing alot better. I think I would look for another dr, but be patient with some side effects ( I wasnt at first) but they do ease up. I would really push for trying another med if you cant keep it down. I vomit once or twice a week, but its not right after taking the meds. It is just random. Good luck, and remember that this is an awsome web site, but alot of people react differently to things. I use this as a general guide and tons of emotional support.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 04 December 2011 - 08:57 PM
Newly diagnosed this year as well, but was put on sprycel first as it has lessor side affects and was yielding postive results. I find that it is just as important to have a good internal med family doctor as it is the oncologist in order to fully coordinate your care. Since being diognased and not having that family care relationship due to job relocations, I have struggled with getting good care for other normal illnesses that need to be discussed for coordinated treatement in order to not interfere with the cancer drug. Make sure you keep copies of your blood work resutls and keep running excel graphs of them.You doctors are most likely not trending this data for you and can be helpful to spot negative trend even though you are in "normal" ranges for blood work.
Keep your head up, be in control, and demand accountability from your care givers.
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