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Need a little help with questions for the onc


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#1 Dsrwbr4536

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Posted 21 June 2011 - 11:38 AM

Good morning everyone. I hope that you are all having a wonderful day and feeling well. Here is a brief summary. My husband was dx in May 11. Started tasigna on May 28. He went for a onc visit on June 8. At this visit the onc walked in, looked at his chart and said

"I think you are already going into remission. WBC was at 41000 now at 6100. Everything looks good."  He then asked if he was having any side effects. Thankfully the answer was just a few mild headaches and of course the fatigue. His response to that was "You are doing great then. Go have an EKG and come back in 2 weeks."

Of course we were very happy with the news but I felt like there were so many questions that I have that i didnt get a chance to ask.  He had not gotton the complete results back yet.

So here is my question? What counts should I be most concerned with? My guess is all of them. I know that this week it says he is having PCR and BCR-ABL. I just felt to unprepared last time. Any suggestions would be great.

Thank you so much for all of your help. Have a great day.



#2 Susan61

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Posted 21 June 2011 - 12:20 PM

Hi:  Glad your husband is responding so well to the Tasigna.  Basically all you blood work tells the story of what is going on with you.  I always get a copy of my blood work, and have always done that since my diagnosis in 1998.  The nurse would always give me my copy to look at before the doctor came into the room so I could look it over.  Then I would just go down the whole list of anything that was out of range to see if it should be of any concern.  For instance my RBC started to go low, and it was because I became anemic.  Now the anemia has been with me all these years from my Gleevec, but we watch my Hemoglobin level to be sure its not too low.  My platelets have dropped through the years, but they are holding. 

    Now when your husband gets his PCR test, have the doctor explain what he sees is happening.  Just ask anything that is on your mind.  That is what the doctor is there for.  Always try to ask everything you can well your in the examining room with him.

   I have always kept my own files with all my copies of all my testing, so I can refer to it.  Also, if I have another appointment with a doctor I always have my records ready to go with me.  I do not have to call and ask for copies etc.  Another good thing is to make a list before you go to your appointment of any questions you have.  Sometimes you get in there and you mind goes blank, then you leave the office and get so annoyed with yourself for not asking something.

  This is just how I have always done it.

Susan



#3 Dsrwbr4536

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Posted 21 June 2011 - 01:02 PM

Hello Susan. Thank you so much for the info. I know I need to write it down this time. The doctor just seemed to be in and out so quickly. I will definatly ask for a copy from last time. But one other thing. Bill just sent me a  text and said is getting a sore throat. I dont know how bad it is or if it might be nothing. I know that it would not be good to go into the onc with that so I told him to call the office to see what he should do. Should he call his primary? Normally we wouldnt for just a sore throat but that was before CML of course. Thank you again for your help.



#4 sdl722

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Posted 21 June 2011 - 01:12 PM

I've been on Tasigna for almost two months now.  Shortly after starting the drug I came down with a cough/cold.  I went to a PCP just to make sure it was a virus and not an infection.  It was a virus so I just toughed it out as there is not much OTC stuff that I can take with the drug.  I think in the beginning there is no harm in being cautious about how one feels.  Does a sore throt usually lead to a cold with your husband?

One thing I've been told is to watch for a fever of 101 or higher.  If that is the case I am told to go immediately to the emergency room as they want to make sure it is not a serious infection.

Good luck.

Stephen



#5 Taylor

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Posted 21 June 2011 - 01:16 PM

I agree with Stephen...as long as you two don't think it's an infection of some kind, there's nothing to be too concerned about if the white counts are not too low---they'll still work normally.  Better, in fact, than before dx (I was having colds every three months that lasted forever before dx!).

Some might think it's a waste of money, but Emergen-C sure makes me feel better



#6 CallMeLucky

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Posted 21 June 2011 - 03:18 PM

I had a bad sore throat last week before my visit with my onc.  I went over to my PCP to do a strep test just to be sure.  I felt it would be irresponsible to walk into a cancer center with strep throat.  There are some very sick people there with very weak immune systems.  The results were negative, it was just a cold and I am already over it.  Chances are it is just a cold, but if there is a chance it could be an infection, a run over to the PCP could alleviate any concern.  On the off chance it is an infection, make sure the PCP consults with the Oncologist before prescribing anything.

Glad to hear he is doing well

Standard questions I ask are

What are my blood counts?  Are any of them out of normal range or of concern?

What are the results of my molecular tests (FISH, PCR)?  Ask them to explain the results if you don't understand them.

What is my current status?  Have I achieved CHR, CCyR, or MMR?

Am I making good progress at this stage of treatment?

Is there anything in my results that concerns you?

What is the next milestone I should achieve and by when?

Are there any changes to my treatment at this time?

Discuss side effects, make sure the doctor knows what he is dealing with so they can stay on top of it.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#7 Trey

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Posted 21 June 2011 - 06:35 PM

His Onc should define the "remission" issue a bit better.  He meant that your husband has achived the first treatment goal, which is generally normalized blood counts (esp WBC).  This previous discussion may provide some additional useful info:

http://community.lls.org/message/34624



#8 ruineto

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Posted 22 June 2011 - 12:09 PM

Hi ,

You should be concerned with the following.

There are 3 stages of response :

hematologic, cytogenetic and molecular.

The best prognosis group is for your husband to achieve Major Molecular response within a year.

Since you started the treatment only last month, by now he should have hematologic response (it means the white cells and platelets have to come back to normal range). The blood test exam he took is showing that he is already in this stage.

From now on he will have to take tests to count the phyladelphia chromossomes and PCR for BCR-ABL tyrosine kinase. When his chromossomes shows totally negative for philadelphia he will have achieved cytogenetics remission and when the PCR falls behind a certain range (dont remember now, i think its 3 log reduction) he will have Major Molecular response.

'Very few people achieve Complete Molecular Response. This means the PCR becomes negative. I only achieve complete molecular response after 4 yrs of gleevec (i had major molecular remission before the one year mark).

So in my opnion this is what you should be focused on , i apologize if i didnt make myself clear because english isnt my first language.

EDIT : i been checking out treys blog, shortly after i answered you, and it has great info and covers everything you asked, its worth checking it. quite frankly his BLOG has more about CML than most of my medical books

Message was edited by: Rui Neto



#9 SunNsand

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Posted 22 June 2011 - 01:13 PM

Yes Trey works very hard at keeping us informed with easy to understand information.  His work is always appreciated!



#10 Happycat

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Posted 22 June 2011 - 03:27 PM

I will also add:

- talk about any side effects he is experiencing, how best to manage it

- discuss the new do's and don'ts

          Scheduling other meds around the Tasigna, in case there are any interactions?

          Are any OTC's forbidden to him?

          Any mineral supplements that are a problem?

          What about foods?  Any foods he should avoid?  

- Is there anything in his medical history, or that of his close relatives, that might be a concern?

          For instance, my brother has hemochromatosis, which can cause a whole host of other medical problems.  It's genetic, so they ran some basic tests to rule it out for me.   It only came up because the onc was asking about other blood-related disorders at my diagnosis.

Traci



#11 Dsrwbr4536

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Posted 22 June 2011 - 06:03 PM

Thanks so much to all of you that have taken the time to answer my questions. I do not know what I would have done this past month with out all of your help. You guys are truly amazing. A special thank you to CallMeLucky who actually wrote the questions for me to ask. I read them straight from your post:)

Today we went back to the onc. This time it was so much better. His PA came in first and I was able to ask everything that I wanted to ask. His appointment went great. His WBC and RBC are a little lower than the dr would like but I have read from many of you that sometimes things plummet before they become stable. How bad is WBC 2.7? Can't remember the other numbers. Susan said to get copies of the bloodwork and I did that. I just dont have them here with me. So anyway he will be having blood work done every week and if everything goes well he will not have to see the onc for a month! He was also concerned with the headaches and the fatigue that Bill is having and talked about switching to Gleevec. Bill is only the second patient that the onc has started on Tasigna. The other one changed to Gleevec due to side effects ( It did make me smile when he said it was "because no one has fatigue or any side effects from Gleevec."  The doctors really should read your posts:) Anyway the headaches are not bad and Bill has been having a little more energy so we are staying with Tasigna for now.

Today they did the BCR-ABL and we dont have those results yet. The PA is going to mail them. Hopefully it will show lots of improvement. Thank you all again. Have a wonderful night.



#12 Dsrwbr4536

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Posted 22 June 2011 - 06:04 PM

Opps! Forgot. The sore throat was nothing. Went away as fast as it occurred. Just some weird thing I guess:)



#13 Taylor

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Posted 22 June 2011 - 06:32 PM

I'd probably stay with the Tasigna for a few months to see if he gets used to it; people usually go to Tasigna due to Gleevec having more side effects, not the other way around   I'd give it some time but eventually to each his own!  Glad he is doing well.  That WBC is low but will probably bounce back. 



#14 CallMeLucky

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Posted 22 June 2011 - 06:56 PM

Fatigue is common on all TKI, so I certainly wouldn't switch for that unless it becomes debilitating and even then, no guarantees another one is going to make a difference.  The headaches supposedly let up after a while, but you'll have to wait for others on Tasigna to respond, I'm on Gleevec.

Glad your second visit went so well.  It really takes a lot off your mind when you have a good visit and sets the stage for the next couple of weeks.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#15 sdl722

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Posted 23 June 2011 - 09:17 AM

My WBC got down to 2.6 two weeks after I started Tasigna.  But a week later it was back up to over 5 and has stayed in the normal range since.  I had headaches in the beginning as well.  For me they weren't too bad; more like my forehead was sore if I would touch it.  Those didn't last too long.  As for the fatigue, what is the hemoglobin count?  Mine was pretty low in the beginning (now normal) and I was having to take afternoon naps everyday.

Stephen






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