70 replies to this topic

[pammartin]

LMAO!  That was so damned funny I had to read it again.  I got it now.  Billie just calls me pain in the ass.........would that help? 

[Judy2]

.............Billie and I will confer.............ooops, I shouldn't have used that emoticon, notice the  horns!!! (maybe he's on Sprycel).

[Judy2]

Hi Billie. I know you are a girl, the he I was referring to was the devil emoticon, not you. I cannot seem to make myself clear. I shouldn't have skipped English class as much as I did in high school. I spent my spring days at the beach!!!

Have a wonderful time in Florida, write and tell us all about the beautiful weather so I can have a vicarious experience.

Judy Judy Judy

[pammartin]

Billie, I sent you an email from my home email, don't go deleting it because you think it is spam (when in fact it's pam) so sorry I could NOT resist.  If I remember correctly in the title I mentioned the fact you were leaving for Florida and I was stuck in Pennsylvania in the cold. 

[Judy2]

Hi Pam South. I'm actually a little nervous about saying this but I just tried to send you a private message in response to the private message you sent me but couldn't send it as your mailbox was full. We only get 5 messages, that includes ones we send and receive. Now I'm afraid Pam Martin willl think I'm tallking to her (Hi Pam) when this time I'm talking to you. I'm afraid it's going to be like our last fiasco, but in reverse, when we were alll mixed up as who was sending what to whom. Anyway, Pam South, you have to delete some messages in order to receive new ones. ...and if we get confused again I AM DEFINITELY RENAMING ONE OF YOU.

Judy

[pamsouth]

Hey Judy 2.  I just cleaned out my message about the time you were trying to post.  Try again.  Wow I really came across a cool LLS advocasy post, trying to share it but I added to many words to the post.  Oh if you want to repost something click on the article then click on share, or click on the share button and paste, select people and go to the tabs that says friends and it will share it with your friend list, or you can add others as well, you will see the alphabet list of people.

My husband and I went to the $2.00 move tonight and saw one of the best movies I have seen in a very long time.  Called Dolphin Tale!  Not a swear or porn in it.  Just as good to see for adults as kids.

PamSouth

[scuba]

Hi Pam,

How are your blood counts now since taking Sprycel? (Neutrophils/ANC = ?)

[pammartin]

I have requested the second part of my test results from Pitt appointment two separate times without results.  I am going to blood work again today, but am annoyed with the entire situation.  If nothing else I return to Pitt the second week of January, I will not leave the office without copies of my test results.  I do have a copy from the one from earlier this month, but because I had blood drawn immediately before the appointment, there was little information beside platelet and white/red count.

Thanks for checking, as soon as I get it, I will post so everyone can help me put the numbers into understandable terms.

Have a great day!

[scuba]

Pam - When starting Sprycel - usually the Oncologists have you tested weekly for CBC (simple blood test, results while you wait) until you show stability. Myelosuppression on Sprycel is common and catching/tracking it is very important in the beginning.

The numbers I follow are:

ANC (Absolute Neutrophil count) > 1.0 is good; > 2.0 is normal; < 0.5 is bad.

Platelets > 50 is good > 120 is normal (+/-); < 20 is bad.

My ANC ranges between 1.0 & 1.6 (I recovered from 0.1).

My Platelets range between 100 - 120 (have been as low as 80).

[Judy2]

Hi Pam Martin. How are you feeling and how is the thing growing out of your head? Does it look something like from "My Favorite Martin", I mean "Martian"?  Sorry, couldn't resist.

Judy

[pamsouth]

Hi PamMartin,

Before I was diagnosed with CML in 2005 (age of 57) I had never asked for lab reports. 

When I found out I had CML, I ask my primary doctor, for the last/previous lab which were 3 year earlier in 2002. When I saw the lab I was a little shocked as my  platelets were high and my granulytes that make up your white cells, Neutrophils, Basophils and Eosinophils were slightly off. It was odd because I can remember my Cholestral being a little high, usually runs about 220, and the doctor wanted to put me on some statin and I said NO.  I found it strange that she never questioned the other things that were off, kicked out/flagged on the report, I suppose it was because they weren't that much off, or perhaps a regular MD is not familiar with what that could mean, but I would have thought she might have suggested another CBC at my next annual appointment instead of waiting 3 years.  I don't know what the insurance or other guidelines might be that a doctor goes by, but if I had gotten the lab report in 2002 I would have insisted on another CBC and perhaps when to another doctor for a second opinion.  but I blindly trusted my doctor, again maybe she was in the guidelines, but I think since some things had been flagged on the report the doctor should have at least told me.  Doctors don't always tell you everything on your labs or have the time to look at them carefully.   I think in 2002 my Platelets were about 575 thousand.  Anyhow the granulytes did kick as low or high.   Funny thing even when diagnosed in 2005 my white cells  and granulyte counts were never off much except the platelets, which got up over 2 million, white cells never did get over 21 thousands.

My mom had stroke 2 week after she had been to the doctor and had her labs done.  I always called the following week to check on labs and they assured me her labs were fine.  When she had the stroke 2 weeks after the labs and went to the hospital, well her labs were such a mess, there was know way they could have possibly been good labs or looked at them, before the stroke.  Actually it was the physician assistant that she was seeing.

Last year my husband Eosinophils started running high and his Hemoglobin, and red cells started getting really low, he went on iron pills for awhile.  Anyhow if my husband had not gotten bad with what began as a bad arthritic left shoulder and went on arthritis med's that he was allergic too, I would never have asked for his labs.  I was shocked at what a train wreck his labs were.  Well I won't go there, just saying get your labs.

I know some cancer patients who follow their own labs with graphic charts.   I don't go as far as to do charts, but I do feel better getting a copy of all my labs, as I can see for myself, what doesage of med are cause good or not so good impact on other things.

Anyhow since the time I was diagnosed with CML, 99 % of the time I ask for my labs and have not had a problem with any doctors office giving them to,  if some reason I don't get them in a couple of day in the mail I stop in an pick them up myself.  If I have a doctor appointment and I know the doctor already has the lab I call ahead and ask the reception to have a copy of the labs ready for me.  I usually have a long wait in waiting room, time enough to go over my previous labs and the current ones, so by time I see the doctor I got a grip on what is going on.   At least I have not a problem so far getting my labs.  Will be changing doctors next January and I am not expecting any problems. 

Happy New Year,

PamSouth

[Ted]

Hi PamSouth,

I'm Ted and I'm new here, diagnosed with CML Decenber 16, 2011. I can't understand why a doctor would wait that long to repeat blood work. I went for my yearly checkup ( which includes CBC) in August of 2011, at that time my WBC was up a little from my normal, about 16,000. He wanted to see me again in 3 to 4 months, I had my CBC done on November 29th, my WBC was almost 40,000. From there it was flurry of activity, bone marrow, CT scan etc. My diagnosis was delayed some due to a tumor on the appendix that showed in the scan. I'm going to be taking Sprycel, I haven't started yet due to the impending surgery for the growth on the appendix. I've been reading the posts but I'm still not sure what to really expect in side effects from sprycel. Any info would be appreciated.

Have a Happy New Year,

Ted

[Judy2]

Hi Ted,

As everyone says -Welcome to the club that nobody wants to join. You will find a lot of great info and support here.  I was dx in May of 2011 and started on Gleevec, went to Tasigna and now I am about to start Sprycel. As I haven't started Sprycel yet I can't tell you first hand what to expect but have heard you can get skin rashes and headaches at first Hopefully, the body adjusts and the reactions lessen overtime. Also, your onc. will watch your blood counts as your wbc and platelets can drop  Everyone tells me you should have your blood monitored weekly the first month and some even say you should have a baseline ekg (as I'm sure you'll have since you are going in for surgery) and an ekg after your first week on Sprycel. There are many people on this board who have first hand experience with Sprycel and I'm sure they will chime in.Do you know if you  had a PCR test? I am assuming you are in the chronic phase. Anyway, I am really just learning about everything myself so others will be good on the technical stuff but I can offer you support. Post whenever you have a question or just need to vent, we are all here for you. Keep us updated on your surgery (when it rains it pours!!!)

Judy

[Tedsey]

Judy,

I don't know if this will make you feel better.  For 3 years after my first baby, I had major weight loss.  It was such a struggle to keep weight on.  I started to look emaciated and became underweight without trying.  Ran to doctors, ended up having another baby, had CBCs, had yearly check ups, yada, yada, but I was told I was very healthy.   The diagnosis was that I was not eating enough while nursing two kids.  My husband and I were still worried.

I went for my yearly check up Nov 20, 2009, and the rest is history.  I didn't even know I was sick, (but it finally explained the weight loss issue).  If my spleen didn't swell up suddenly, I may have waited another few weeks to see my GP.  But I asked for a sooner appt.  Glad I did.  My CML was not caught early, but luckily, it was still in the CP.

Six months ago I saw my OB/GYN.  She told me that she had gone through my records over the years and I showed absolutely no signs of anything wrong with my blood.  My GP called me and apologized when I was first dx.  She told me she couldn't understand how this could happen.  She and I were in cahoots about preventative medicine and had long talks about it.  I did everything I could to live a healthy lifestyle. 

Clearly, physicians cannot always control for CML (or strokes).  As CML, in many cases, appears hidden until it just decides to take over.  Perhaps I just had bad timing all around and it was always missed each time I saw a doc.  Then one day, my body just couldn't hold it back.  Too bad modern medicine could not do better than that for your mother or me.

Take care.  Hope your husband is doing well.

Tedsey

[Tedsey]

Dear Ted,

I am very sorry to hear about your diagnosis.  I have been on Sprycel for almost a year and a half.  Initially, I had headaches and flu-like symptoms.  But it only lasted a week and a half, (cannot remember, exactly, but it wasn't long).  Many people experience no side effects.  Right now, I live a fairly normal life on the drug.  I do not have any life-altering side effects (that I notice).  I have some low counts and chronic mouth sores, and it appears I have been transported back to puberty with my skin, but it is unclear if that is caused by the drug, disease, or just the wrong genes turning on and off--whatever.  I seem to be in a minority with all that.  Keep us posted how you are doing.  There is a lot of hope that many of us will be alive and kickin' for a very long time on the drugs.

I wish you quick healing and good health from now on,

Tedsey 

[Ted]

Thanks for the info Judy. I'm not sure what the PCR test is, unless you are referring to the test for the Philadelphia Chromosome. I had that test and it was positive for the chromosome. Yes I am in the chronic phase, I guess I have a lot to learn, I'll keep in contact.

Thanks Again,

Ted

[Ted]

Tedsey,

Thanks for the info, I will be happy if my side effects are only what you are describing. I'll keep you posted and I fully intend to be alive and kicking for a long time.

Thanks

Ted

[Judy2]

Hi Ted,

As I understand it the PCR test measures the percentage of leukemia cells to a control gene. It is a blood test, also can be done during a BMB. One should have been done at dx, the next one should be done 3 months post dx. The oncs look for a trend with this test, one test if elevated doesn't mean anything by itself. This is a very sensitive test and the goal is to eventually have a major molecular response (MMR) which would be 1000 fold less than you started with at dx. So when I was dx my PCR test was 44% so I should eventually be down to 0.04% Some people reach PCRU, that is when their PCR is undectable by the means we have today. That does not mean there aren't any leukemia cells left, it just means we don't have tests sensitive enough to look any further.I was told by my onc. at 6 months post dx my PCR test should have been down to 1%. As it was not we knew the medicine I was on was not working effectively. I think you should find out from your onc. if this test was done when you were dx. If it was you should get the results so you can keep track of it over time. I think it's always good to keep as informed about your treatment as possible. Anyway, others on the board can probably explain all this better than me. Hope this helped.

Judy

[pamsouth]

Hi Ted,  This is PamSouth,  I think we have a Ted and a Tedsey, 2 different people?  Don't want to get the two of you mixed up.

I was just wondering if you would care to share your age?

When I was referring to my CBC and other labs in 2002, I was 54 years old.  I went to my primary care MD ever year for a check up as had to, since I was on Blood Pressure pills since the year 2000.  Plus was having a lot of colds and bone pain, and change of life.

Yea, I am still a little upset that my primary doctor did not run another lab for 3 years, from 2002 to 2005.  In fact when I was diagnosed with CML in 2005 and I went back to my primary doctor and asked for my previous labs, the clerk kept saying these are it 2002, I kept saying surly it has not been 3 years, but then I remembered at my last doctor appointment my primary doctor said; it has been 3 years since we did your labs, time to do them again.  So I thought it was just insurance protocol, as my labs must have been OK in 2002.  But will I looked at the 2002 labs my platelets were about 75 thousand over and the granulytes were only slightly off.  But even in 2005  by granulyes & white cells were only slightly off, it was my platelets that were over a million, then two week later they were over 2 million.

I still would have thought since my 2002 labs had several or a combination of high and lows that kicked out on the lab report, my doctor would have told me or would have said, less do another lab or at least have done an annual lab.  Was she going by insurance guidelines?  Were my counts not off enough, I don't know?  But at the time I was diagnosed in July 2005, I was in such shock and I was also making arrangements, to fly from my home in Indiana to MDAnderson Houston TX, as I wanted to go to one of the leading cancer research hospitals and redo the labs and educate myself on CML.

Odd I still go to the same primary doctor, her husband is the pathologist at one of the hospitals in Indy.  She would say boy we caught that early.  I just stare at her and say you think so.  Then I think to myself MDAnderson said this (CML) had been working on me for years.  Yet I have some other doctors, as I was upset I was diagnosed in 2002,  say no your doctor caught it with in a few months.  So go figure. From listening to others I would say the doctor at MDAnderson was correct It, CML, had been working on me for a long time.

You know the bone marrow makes the Stem Cell, that make all the blood, two sides, the Myeloid and the other side Lyphoid.  The CML is on the Myeloid side. The actual bad leukemia stem cell, is before it makes your red cell, platelets and white cells which remember the granulytes that make up the white cell is your Neutrophil, eosinophil, basophil and I think your monocytes. You probably already know at some point it makes 23 chromosomes and #9 and #22 chromosome, translocate or break into bits, the bit of #9 and #22 fuse together and create a 24th chromosome, called PH+ or the Philadelphia chromosome.   This PH+ chromosome creates and enzyme that makes copies of the PH+.  So the drugs for CML only attack and kill at the bottom of the chain. They do not kill the ancient stem cell that went bad.  According to a report I read the Ancient mother stem cell (before it creates the blood) sometimes goes dormat and hides close to the bone.  The B cell on the other side, the Lyphoid side can not get to the ancient mother stem cell to kill it as their is little to no oxygen where the stem cell is hiding next to the bone.

Trey has a good article he wrote on this.  Also I think CallMeLucky wrote a pretty good article with some graphs where it show the top of the line where the bone marrow make the stem cell down to the blood thru myeloid and lymphoid side.  That really helped me a lot to understand why CML is much more complicated then just killing the PHiladelphia Chromosome, we don't have a drug to actually get to the stem cell that is causing the leukemia.  At least that is the way I get it!

Would it have made any difference, if my primary doctor had caught the CML in 2002 instead of 2005 is the big question, people ask me/  Well I think so, as I would not have had so many CML Cell.  Also things that I had been going to the doctor for in between annual wellness checkups,  the doctor, including me, were just chalking it up as change of life, after all in 2002 I was 55 years old.  Mostly had chronic bone pain, night sweats, and a lot of colds, and very tired, again we just chalked it up as change of life, otherwise I seemed to be healthy, heart, liver, kidneys.  Funny on the bone pain, it was all through out my body, but I only had very mild arthritis.  I did have a couple of old injuries from years ago, and I was thinking maybe the old injuries were causing the horrible bone pain.  I did start to lose some weight in 2005, which I needed to.  All of a sudden I just wasn't hungry anymore, and if I did eat a little I felt sick.  Well after being diagnosed with CML that explained as 2 million platelets I'm sure must have been filling up the spleen, etc.

Also sometimes I wonder about filing for disability.  I started to file after I was diagnosed in 2005 but social security said I was diagnosed over 5 years from last day of employment, so I didn't even try.  Now if I had been diagnosed in 2002 I would have met that 5 year rule.  Although some say I can still file.  I have heard that if your file on CML alone, you can not get SSI if you are in a good response from your medicien, but others have said if you have other problems, like the bone pain or whatever, and you add that to the mix.  Well lets just say others with CML got disibility SSI but not based solely on SSI.  So you might want to think about that.

Good Luck,  Prayer to all of us.  Sometimes feel like an experiment.

PamSouth