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Newly diagnosed - too many questions


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#1 RedZee

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Posted 03 March 2015 - 03:47 PM

Hi all, 

 

I found this group through another group and I was recently - Dec 11 - diagnosed with Chronic Myolegenous Lukemia (I believe that it is different than Chronic Myeloid Lukemia from the research I have done). When I was first told about this I was told by my doc to google it to find out what it was. While I appreciate the fact that he did not want to give me false information......it has been pure torture to understand what to expect - especially when the first appointment with the hematology clinic wasn't even scheduled at that point. Since this diagnosis, I have done much research and a few things have happened. One, I've been laid off and my doc put me on the EI sick benefits (which give me 15 weeks to get healthy enough to work again). Two, I ended up at the ER for 19 hours - at the same time being awake for 60,5 hours straight because of the pain in my left side. I have Fibromyalgia and IBS, and my IBS has gone severe so now I'm facing barium X-rays and testing to find out why and if it's more than just IBS - my brain wants to know if it's connected somehow with the lukemia. Because of my visit to the ER, they have finally moved my appointment from the end of April to next week - I am so thankful of this because finally the torture of a million questions and no answers may end. I am not sure if any of you can possibly give me a heads up of what to expect treatment wise.....or emotional wise........I have accepted the fact that I have cancer and that it's a cancer I was born with and not inherited from my father- who passed away this past July from terminal cancer. I just don't do good with unknowns......

 

Sorry for the long ramble....

 

RedZee



#2 Darlene_Jack

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Posted 03 March 2015 - 04:10 PM

Hi RedZee,

 

I was diagnosed in July 2013.  Im still adjusting, if there is such a thing.  There are good days and bad.  I am still trying to find a steady path.  I was on sprycel until September 2014.  I had to stop because I developed Pulmonary Hypertension.  At the time I was PCR test said I was at 0, undetectable.  I retested in December 2014 and had lost my PCRU.  I am not attempting to start Bosutinib.  I tried it a week ago and experienced nausea vomiting and diarrhea.  I was told to stop and restart last night.  Amazingly no side effects except for a lil headache.  The body aches, fatigue etc seam to come along with this but everyone is also different.  I hope you get treatment soon and it is successful. This is a great place to come to talk to others with CML.  Your in the right place


One breath at a time

Darlene jack...

#3 JPD

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Posted 03 March 2015 - 04:13 PM

So you havent seen an Oncologist yet?  Have you had a bone marrow biopsy?  Do you know what your WBC was when you got diagnosed?

 

As to what to expect - the drugs most likely WILL work & you'll just have to deal with the side effects (different drugs have different side effects).

 

You will get started on a TKI drug and also, most likely, a drug that is helpful in flushing out the dead blood cells (that the TKI drugs will kill) and to protect your kidneys (not a big deal, just take them for a while and drink lots of water).  The TKI drug will be slaughtering the leukimia cells and your blood counts should return to normal in a few weeks - though it might take some tinkering to get them stable.

 

You are in the right place for help and support.  This is a marathon, not a sprint, just keep your head up and take your meds :)


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#4 RedZee

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Posted 03 March 2015 - 04:39 PM

Thanks to both of you!  No I have not seen anyone as of yet - thankfully that will come on the 11th and I may finally have some answers. My counts have been all over the place from 22,500 when I was first diagnosed, down to 16, 500, back up to 18,000-something (wasn't given the exact number). Then when I ended up in the ER with the extreme pain (which I can handle A LOT of pain due to the Fibromyalgia) they were at 21, 200, then down to 14, 500 the day I was discharged from the ER. I fought with the nurse in the ER to even see my CT scan report - which is my right to look at! I live in Canada so I know things are different here for healthcare and such. What they found on the CT was that my spleen was on the high side of normal and measured 13cm, was bulky with fatty cells - unsure of what that means though. Their concern was the enlarged lymph nodes in the abdomen which each one measured 1cm. From the research I've done on the National Cancer site and the Mayo clinic site, CML doesn't present with enlarged lymph nodes....Lymphocytic lukemia does.........does this now mean I've been misdiagnosed? What side effects do the TKI present?

 

Sorry I have a million and one questions!



#5 hannibellemo

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Posted 03 March 2015 - 05:08 PM

RedZee,

 

Welcome, you're at the right place. CML is known by many different names and it is all the same disease, chronic myeloid, chronic myelogenous, chronic granulocytic - all the same! I was going to ask you if you lived in the United States because I can't imagine anyone putting you off to be seen by an oncologist. That is really not acceptable. And having your oncologist tell you to Google it?! My first thought was he/she doesn't even know enough about it to explain it to you. The good thing is your blood counts are not very high but your spleen may give you some problems in the month's time. That pain was what drove me to the doctor in the first place.

 

Without a verification of the Ph+ (Philadelphia positive) chromosome, which is the hallmark of CML I'm not sure how you could have been definitively diagnosed at all.

 

Trey has posted a reprise of his information that everyone recently diagnosed should read and it should put your mind at ease if, indeed, it turns out you have CML.

 

Giving you 15 months to get better and making you wait 5 of them to get seen seems rather contradictory. Once treatment starts it could be a relatively short time for your spleen to shrink. I'm not sure what you do for work, but, like with mononucleosis (sp?) one thing you don't want to do is get hit and damage your spleen. It is vulnerable when it is enlarged. Otherwise, I'm not sure why you've been laid off. But then, I don't understand the ins and outs of your health care system. And, it may be because you just feel crappy!

 

At your April appointment I would request a bone marrow biopsy (demand if you can), CBC (complete blood counts) and a metabolic panel (more blood work). There are other useful blood tests and one of them should be a FISH (Flourescence In Situ hybridization) to check for the PH+ chromosome. 

 

Good luck and keep us posted. If there is anything you can do to bump up your appointment I would do it! 


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>


#6 RedZee

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Posted 03 March 2015 - 08:37 PM

@ Pat....it wasn't an oncologist that said that, it was my family doctor. I have not been in to see an oncologist or anyone from the hematology clinic yet. They did a full blood panel - 4 pages of blood work = 17 vials of blood taken - before I was diagnosed with CML. 

 

Sorry I am unsure who Trey is. 

 

I was put on sick benefits through unemployment insurance and they only last 15 weeks - not months lol. I was laid off due to the Oil prices - my company laid off 1000 contract people and I just happened to be one of them. The only one that knew I had the lukemia was my immediate boss and it went no further than her. I have been at my job for over two years. 

 

My appointment is now next week (March 11) and the bad thing about our healthcare system here is that it likes to torture patients lol. I knew of a girl diagnosed with lung cancer and didn't get her first appointment for 6 months! While my WBC isn't way up like some, I have every other symptom EXCEPT weight loss (darnit!!) The one thing that I found does NOT fit in with CML is the enlarged lymph nodes....

 

@ Mr. Tee - Hi neighbour!! I have heard that things go faster down there! I was so tempted to go down there and see if I could get in faster. Thankfully because of my trip to the ER, they moved my appointment to next week. I have not let the disease define me - no more than I let the Fibromyalgia or the IBS define me.......the only thing it does is limit me in some areas! haha. My motto is to be positive always! I pushed back on the ER doc when I asked if he could send a letter to get me in faster to the hematology clinic.......he tried to tell me it was up to me! I looked at him and told him EXACTLY how it was lol!



#7 AllTheseYears

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Posted 05 March 2015 - 07:31 AM

Red Zee:  As a longtime survivor of CML (in the USA), I must emphasize how important it is to see a hematology oncologist who deals daily with CML.  This is important because he/she will be knowledgeable, have access to the latest tests, and will have experience with different CML-fighting drugs.  You probably will feel more taken care of and comfortable.  Meanwhile, you've got to make yourself be informed so you can advocate for yourself will surviving this rare leukemia.  Have courage. Have optimism.  Take care of yourself.  



#8 hannibellemo

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Posted 05 March 2015 - 04:20 PM

Hi, RZ,

 

I'm so glad you got your appointment moved up! Trey is our resident expert on CML and has, over the years, accumulated lots of resources for us. I should have posted the link before, here it is: http://community.lls...ed-cml-patient/

 

BTW, enlarged lymph nodes are not unheard of with CML.

 

I know you were told to Google CML and hopefully, that led you here, but it wasn't that long ago that a diagnosis of CML came with a life expectancy of 3-5 years. The development of the targeted therapy Gleevec changed all that and there have been 2nd and 3rd generation drugs (tyrosine kinase inhibitors) developed since then. There is still a lot of out dated information on the internet about CML that can scare the bejesus out of you - so be careful what you read. That's why Trey has posted his "readings for the newly diagnosed". It's very helpful and anxiety relieving.

 

Good luck and keep us posted.


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>


#9 snowbear

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Posted 05 March 2015 - 04:28 PM

I had tender, painful lymph nodes in my throat and neck for two years before being diagnosed with CML. 



#10 RedZee

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Posted 06 March 2015 - 12:29 AM

Thank you all, I just want to note that I'm not anxious lol, I apologize if I came across that way! I just want answers and yes my search did lead me here to find this forum and learn more :) Thank you all for answering honestly. 

 

My doc had told me that people live years and years with CML and that if I was to have any type of lukemia, this was THE one to have! So that did no dishearten me, I know that I will beat it.....but for me, knowledge is power and the more I learn the better I am! 

 

It's also helpful to know that perhaps I wasn't misdiagnosed because of the lymph nodes. I will know more in 6 days.......can't wait!! 

 

Do any of you have Fibromyalgia and IBS?



#11 RedZee

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Posted 11 March 2015 - 05:34 PM

Well I thought I would say thank you to all of you that answered my questions. I had my first appointment finally with the hematologist and found out why it took so long for me to get in to see her. Apparently my file somehow got misplaced, otherwise she said I should have been in to see her back in Dec. They did do a bone marrow aspiration and biopsy this morning as well - holy hell that really hurt!! She gave me the sheet with all the numbers from my blood work and showed me how they were able to diagnose me with CML before doing the bone marrow biopsy. From the looks of the blood work, I've had CML for around 2 years. I am much relieved to have some answers finally. We discussed the different treatments and I'm also happy to know that I won't have to go through chemo at this point. 

 

Results will be in next week from the fluid and chunks she took today so I'll know what stage I'm at and what TKI that I'll be starting with. She gave me a booklet with all the information on CML and the the medications and side effects. :) 



#12 RedZee

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Posted 12 March 2015 - 03:43 PM

Hi, is Lynne you Doctor?

Hi, 

 

No Lynne is not my doctor. Her name is Elena Liew and she's at the new Kaye Edmonton Clinic. :) 



#13 wvu83

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Posted 10 August 2015 - 08:13 PM

Well I thought I would say thank you to all of you that answered my questions. I had my first appointment finally with the hematologist and found out why it took so long for me to get in to see her. Apparently my file somehow got misplaced, otherwise she said I should have been in to see her back in Dec. They did do a bone marrow aspiration and biopsy this morning as well - holy hell that really hurt!! She gave me the sheet with all the numbers from my blood work and showed me how they were able to diagnose me with CML before doing the bone marrow biopsy. From the looks of the blood work, I've had CML for around 2 years. I am much relieved to have some answers finally. We discussed the different treatments and I'm also happy to know that I won't have to go through chemo at this point. 

 

Results will be in next week from the fluid and chunks she took today so I'll know what stage I'm at and what TKI that I'll be starting with. She gave me a booklet with all the information on CML and the the medications and side effects. :)

My hemat/onc checks my lymph nodes in neck, armpits, ankles and legs at every check up, in addition to all the palpitating, blood drawing, etc.  Yes, bone marrow sampling (btw they do it with an auger!) is painful and no amount of numbing will stop it. If she puts you TKI (Tasigna, Gleevec, etc) I would be interested to know how much you pay out of pocket in Canada. Very interested. Glad you caught it. Go get well!!!






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