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NATE'S AND MY JOURNEY


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#1 natesmama

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Posted 24 September 2011 - 02:30 PM

I ALREADY PUT THIS ON ANOTHER THREAD BUT DECIDED I WOULD USE IT TO START A NEW DISCUSSION AND HOPEFULLY MEET MORE FRIENDS AND SUPPORT.


I AM NOT A  CANCER PATIENT BUT MY 31 YEAR OLD SON WAS DIAGNOSED WITH CML A COUPLE  OF WEEKS AGO. THE DRS THINK THAT HE PROBABLY HAD IT FOR OVER TWO YEARS  BEFORE HE WAS DIAGNOSED. HE LIVES BY HIMSELF IN MIAMI AND WHEN HE CAME  HOME (DE) TO VISIT IN AUGUST WE WERE ALL AGHAST WHEN WE SAW HIM. HIS  PULSE WAS ABOUT 140 AT REST, HIS FEET AND ANKLES WERE SWOLLEN WORSE THEN  ANY PREGNANT WOMANS. HE HAD OBVIOUSLY LOST WEIGHT AND YET HIS ABDOMEN  WAS DISTENDED.HIS HEARING WAS VERY IMPAIRED IN ONE EAR, AND HE WAS  EXPERIENCING SOME PANIC AND ANXIETY RELATED ISSUES WHICH HE WAS TRYING  TO SAY WAS THE ONLY THING WRONG.

      I AM A MAMA BEAR EVEN THOUGH MY CHILDREN ARE GROWN, AND I BEGGED HIM TO  SEE THE DR WHEN HE GOT BACK TO MIAMI. HE DID, BUT THE DR ONLY FOCUSED  ON THE ANXIETY SYMPTOMS AND SENT HIM HOME WITH XANAX FOR HIS ANXIETY AND  AN ANTIBIOTIC FOR HIS EAR. JUST A FEW DAYS LATER, THE TOP OF NATHAN'S  FOOT BEGAN TO TURN RED AND SWOLLEN WITH WHAT APPEARED TO BE AN INSECT  BITE. LONG STORY A LITTLE SHORTER, HE WENT TO AN URGENT CARE, SAW A LADY  DR THAT REALLY LISTENED AND WAS CONCERNED. SHE TOOK AN EKG, A CBC, GAVE  HIM MORE ANTIBIOTICS AND SENT HIM HOME. THE NEXT DAY HE HOBBLED TO WORK  AND EARLY AFTERNOON RECEIVED A CALL FROM THE LADY DR. SHE SAID "I NEED  TO SEE YOU IN MY OFFICE AS SOON AS YOU CAN GET HERE". HE LEFT WORK AND  WENT TO THE OFFICE.

     I WAS AT MY DAUGHTER'S HOME HELPING WITH MY GRANDBABIES WHEN HE CALLED  ME AND SAID "MOM, I HAVE LEUKEMIA. THEY SAID I HAVE TO GO TO THE  HOSPITAL, BUT I DON'T WANT TO GO UNTIL YOU GET HERE." THAT WAS AROUND  2:00, FRIDAY AFTERNOON, SEPTEMBER 2, 2011. I ONLY HAD A COUPLE OF OLD  OUTFITS AND WORNOUT SANDLES WITH ME AT MY DAUGHTERS, BUT BY 8:00 P.M. I  WAS ON A ONE WAY FLIGHT TO MIAMI.

      THE NEXT MORNING WE WENT TO THE EMERGENCY ROOM AT UNIVERSITY OF MIAMI  HOSPITAL. THEY COULDN'T BELIEVE HOW BAD NATHAN'S VITALS WERE AND HE WAS  STILL WALKING AROUND.  HIS WHITE BLOOD COUNT WAS WAY OVER 600K, HIS B/P  WAS HIGH HE COULD BARELY BREATHE, HIS FEET WERE GIGANTIC AND HIS PULSE  WAS 150 LAYING IN BED. NEEDLESS TO SAY, HE WAS ADMITTED. SINCE IT WAS  LABOR DAY WEEKEND, THAY HAD SOME TROUBLE GETTING TESTS DONE ETC., BUT  FINALLY SEVERAL DAYS LATER HE WAS TOLD HE HAS CML IN THE ACCELERATED  STAGE. HE IS ON GLEEVEC AND IS NOW HOME. I AM STAYING IN MIAMI TO HELP  HIM OUT.

  NATHAN IS HOME NOW AND CONTINUING TO TAKE GLEEVEC DAILY. THERE WAS A LOT OF RED TAPE INVOLVED IN GETTING THE CHEMO FOR HIM AT HOME AND HE ACTUALLY WAS WITHOUT IT FOR 3 DAYS. HIS WBC HAS GONE FROM 600K+ TO YESTERDAYS READING OF 190K. IS IT DANGEROUS FOR THEM TO TAKE HIM DOWN SO QUICKLY? HE IS ON 600MG/DAY OF GLEEVEC.

  IN HIS "REPORT" THEY SAID THAT HE HAD THE PHILADELPHIA CHROMOSOME IN 95% OF HIS CELLS, BUT THAT THE BLAST COUNT WAS LOW AND HIS BONE MARROW SHOWED A LOW PERCENTAGE OF BLAST CELLS.

  IT DEPENDS AN WHICH DR YOU ASK ABOUT BMT. HIS ONC SAYS HE FEELS PRETTY SURE HE WILL NEED ONE AT SOME POINT, WHILE THE TRANSPLANT DR SAYS NO.

  IT WORRIES ME TO THINK OF HIM BEING ON SUCH A TOXIC DRUG FOR 30+ YEARS.

  I APPRECIATE SO MUCH ALL OF THE ENCOURAGEMENT I HAVE ALREADY RECEIVED AND WILL BE LOOKING FORWARD TO MORE SUPPORT, EXPLANATIONS AND ENCOURAGEMENT.

                                                                                                                                                                                              NATESMAMA (PAT)



#2 hannibellemo

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Posted 24 September 2011 - 03:19 PM

Hi, Pat

Our children never really grow up in our eyes they just get older, I know what you mean about being a mama bear - I think most moms would have done the same and aren't you glad you did?

It sounds like he is responding very well to the Gleevec and it is good news that the blast counts were low although it would be helpful to know what the exact number was because then the more technically inclined members could give you better information. Do you know if Nate's oncs have changed their minds on his Accelerated Phase - CML diagnosis? Have they mentioned that it could be Chronic Phase instead? Be sure that Nate gets copies of all his test results and if you let us know the results there are people on the board who can interpret them for you so they are easily understood.

Don't worry too much about Gleevec and toxicity. We are not talking about chemotherapy here in the cancer treatment sense. Chemotherapy drugs work like a shotgun and destroy any cells that get in its way, not necessarily just the malignant ones - that is true toxicity. Gleevec (and the 2nd generation TKIs - Sprycel and Tasigna) are more correctly called "targeted therapy". These drugs zero in on the mechanism which allows our white blood cells to reproduce like crazy. I'll give you a link to go to that one of our members, Trey put together, to educate and reassure the newly diagnosed.

http://community.lls...tart=0&tstart=0

I know you have alot to absorb just know but I wanted to let you know that you came to the right place for current and accurate answers to your questions and maybe even more importantly, encouragement and support when you need it. I would also encourage Nate to get on and talk to people - there are many young people who post here regularly.

Good luck!

Pat

PS. Using all caps makes your posts very difficult to read. Please don't use your caps lock key when posting.


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>


#3 Trey

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Posted 24 September 2011 - 03:40 PM

Getting the leukemic counts down quickly is important, so he is not dropping too fast.  But he should be taking Allopurinol to help remove all those dead cells.  And he should be drinking a lot of fluids until the cell counts get down under 25K.

The low blast count is a good sign.  If his Basophil counts were also less than 20% at diagnosis, then he was probably still in Chronic Phase, and there would be no reason to assume a BMT will ever be necessary.

Gleevec and other TKI drugs are not "toxic" and they are not chemotherapy.  They have side effects and some relatively rare longer term effects in some people, but most side effects are reversible upon stopping drug therapy.  Most drugs such as cholesterol drugs, blood thinners, and a host of other drugs people take daily for a long time have side effects, some difficult.  All of us would prefer to not take a drug every day, but we also prefer it to a BMT or the usual dire consquences of CML.  I believe you will gain a greater appreciation for these TKI drugs the more you learn about them, and the more you see what they do to make Nate well again.



#4 Happycat

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Posted 24 September 2011 - 05:29 PM

Hi, Pat, and welcome.  I'm glad you saw your son and urged him to go to the doctor.  Who knows how long it would have taken him otherwise?  I hope he is doing better and feeling better, although the first few months on Gleevec can be painful.  Luckily, for most of us, the pain subsides within the first 3-4 months.  Most of mine was gone within the first 6-8 wks.  I do hope he is on allopurinol, since his body has a huge glut of dead WBC to clear out of there.

There is a lot to learn here, so I urge both of you to get on and check it out.  Trey has put together some very nice info for the newly diagnosed.  And he is often posting other useful info on different topics, too.  Get on any time you have questions or just need to talk.  And encourage your son to get on, too.  There are lots of people here about his age who can commiserate with them, suddenly feeling old at 31.  I know I felt old and decrepit at first, because the Gleevec really hit my joints.  But I don't have much of that now.

Traci



#5 jones2641

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Posted 24 September 2011 - 10:03 PM

Hi fellow Mama Bear,

I'm glad Nate has  you and I'm glad your journey lead you to this discussion board. My husband is 4 years from diagnosis and I understand the overwhelming feelings you're having to process from a Caregiver's point of view. I too am new to the discussion, but I'm learning so much. I understand your concern with the medications and I once shared your thoughts. But, 4 years later I can tell you Gleevec is an awesome drug. I know everyone is different, but from our experience My Ray has tolerated the drug very well (side effect wise). You're probably being bombarded w/info and data and opinions and everything that comes w/ learning about CML, but hang in there. I will pray for you and your Nate. Keep us posted.

<3 Mojo



#6 natesmama

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Posted 25 September 2011 - 01:03 PM

    NATHAN IS ON ALLOPURINOL TO CONTROL THE URIC ACID IN HIS BLOOD. THE HOSPITAL DIDN'T REALLY GIVE HIM ANY PAPERWORK EXCEPT FOR THE PAPER CONCERNING HIS "PHILADELPHIA" RESULTS. WHEN WE GO TO THE DR TOMORROW, I WILL ASK FOR OTHER RESULTS WRITTEN DOWN FOR US.

    I REFERRED TO GLEEVEC BEING TOXIC BECAUSE THE PACKAGING IN CAME IN THE MAIL AND A LABEL ON THE MEDICINE ITSELF SAID "TOXIC HANDLE AS A BIOHAZARD" OR WORDS TO THAT EFFECT. I TAKE SEVERAL MEDICATIONS MYSELF, BUT HAVE NEVER RECEIVED ONE LABELED THAT WAY.

     ACTUALLY, SO FAR, NATHAN HAS HAD VERY FEW SIDE-EFFECTS. HE LIKES THE OCCASIONAL GLASS OF WINE, OR TWO, IS THERE ANY HARM IN THAT? ANY OTHER FOOD, DRINKS, ETC THAT HE SHOULD EITHER STAY AWAY FROM OR EMBRACE?

    THANKS AGAIN.

                                                                                                                                                                                                                                              PAT



#7 Susan61

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Posted 25 September 2011 - 04:33 PM

Hi Pat:  I agree with everyone else that Nate is responding well.  When things stabilize more for Nate, he should join in with the discussions that we have on here.  He will get a lot of good information and support.  He will see people who are newly diagnosed like he is, and that will really help him.

If he does not want to join in, please feel free to keep in contact with us to share how well he is doing.

I have had CML for almost 13 years, and on Gleevec 11 years.  It is a miracle drug for so many of us.

Glad you posted to us, and I think the responses have made you feel better and understand better how the process goes with the treatment of CML

Susan



#8 Trey

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Posted 25 September 2011 - 06:32 PM

The packaging warning is odd, but the reason it says that is because there is a caution about pregnant women coming in contact with Gleevec.  A silly issue to which lawyers over-react.

Drinking occasional wine, etc is fine.



#9 Happycat

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Posted 25 September 2011 - 06:37 PM

Ah, so that's perhaps that's why the pharmacist who filled my first prescription said the same thing.  Must've assumed I might be still building the family.

They had a similar warning on TV a few years back for some sort of male hormone thingie - I think it was to help regrow hair.  Not rogaine, it was an actual pill, for alopecia.  Can't remember the name of it, but they were very specific about pg women not handling broken tablets.

I asked my onc about the "toxic" warning, and he said not to worry about it.

Traci



#10 LivingWellWithCML

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Posted 25 September 2011 - 07:20 PM

And I'll chime in on the wine -- I have a glass or two of red wine nightly with Gleevec 400mg (that I take with breakfast) ... my CML specialist said it was fine.  He just suggested that I don't drink the whole bottle in a single evening.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 CallMeLucky

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Posted 26 September 2011 - 10:39 AM

Grapefruit juice should be avoided, per the manufacturer.

Some food he may find he will not tolerate as well as he used to.  My tolerance for spicy food has gone down a bit, but overall I haven't had to change my eating habits or really much of anything.  Fatigue can set in over time.  For most it is not debilitating, but it can be annoying.  I am 38, married, with two young children.  I still work full time and do all the family stuff I used to, but I do go bed earlier now and occasionaly have to catch a nap.  Not the worst thing when you look at the big picture.

Glad they got him diagnosed and he is now on treatment.  The best thing is to just take it slow and not let what if's get out of hand.  Stick to what are the facts and deal with it as it comes.  Very easy to start planning all the alternate scenarios out.  That will mostly be an exercise in wasting time.  Just stick to the treatment and give it a chance to settle down.

Best of luck.....


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%
 

 


#12 natesmama

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Posted 29 September 2011 - 04:07 PM

HELLO EVERYONE. NATE HAD A VERY GOOD APPOINTMENT TODAY. HIS WBC IS DOWN TO 89K. WE ARE SO GLAD FOR THAT, QUITE A DROP FROM 600K+ IN 4 WEEKS. I ASKED THE DOC IF HE IS STILL IN ACCELERATED STAGE OR BACK TO CHRONIC. HE SAID HE IS STILL ACCELERATED. HIS SPEEN AND LIVER ARE STILL AS ENLARGED AS IT WAS FROM THE BEGINNING SO HE CAUTIONED HIM TO BE CAREFUL. NATHAN ASKED ABOUT DROPPING HIS GLEEVEC TO 400MG BUT DOC SAID NOT YET. HE HAS PRETTY INTENSE NAUSEA SO HE POPS HIS PILL JUST BEFORE GETTING INTO BED. HE IS DIZZY MOST OF THE TIME WHEN HE IS UP AND MOVING. HE ONLY HAS TO SEE ONC 1/WK NOW. HE IS GOING BACK TO WORK NEXT WEDNESDAY. I AM GOING TO STAY WITH HIM A BIT LONGER, TO HELP WITH THE LONELINESS AND ANXIETY. I AM SO SORRY THAT MY SON GOT SO ILL, BUT I AM SO THANKFUL FOR THE SPECIAL TIME I HAVE HAD WITH HIM.

  IN RESPONSE TO SOME OF YOU.......NEVER SAY NEVER, OF COURSE BUT NATHAN ISN'T A FORUM TYPE PERSON. HE DOESN'T MIND THAT I POST ON HERE, HE APPRECIATES YOUR ADVICE AND ON THE FACEBOOK PAGE OUR FAMILY HAS SET UP FOR HIM HE ALLOWS AND EVEN ENCOURAGES ME TO BE VERY HONEST AND TO POST PICS ETC, HOWEVER I DOUBT IF HE WILL GET ON HERE AND POST HIMSELF.

  I WILL UPDATE FROM TIME TO TIME. THANKS FOR ALL OF THE ENCOURAGEMENT.

                                                                                                                                                                                        NATESMAMA, PAT



#13 Susan61

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Posted 29 September 2011 - 05:52 PM

Hi Pat:  So glad for your uplifting post on Nate.  He will get through this, and if possible maybe he can wait to return to work if he is having these episodes of dizziness.  I do not remember if you said what he does for a living, and its none of my business with regard to how he manages financially.  He should be eligible for some temporary disability.  Also, he should avoid contact with people who are sick.  He is doing good, and you want him to keep going in that direction.  This is just my opinion.  Its Flu and Cold season, and its so easy to pick up somebody else's bug.  The doctor said he is still in the accelerated phase of his CML.  Hope you do not mind my 2 cents.  I just want to see him do really good.

Susan



#14 Happycat

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Posted 29 September 2011 - 06:15 PM

Pat,

Is there any reason for him to go back to work so quickly?  Is he running out of sick time or short-term disability?  Any way he could try to work from home??  It just sounds like he'd have a tough time of it with nausea and dizziness.  Is he able to drive?  There's no point getting into a car accident, too.

One option he might consider is to see if he can break up the dose a bit.  Lots of people here take 4 x 100 mg pills each day, and find it is easier to manage the side effects.  Not sure if he is on 400, 600 or 800 mg, but just spacing the doses out a bit may help.  I'm also not sure if that is appropriate for someone in accelerated phase, but he can discuss that with the onc.

Traci

P.S.  I'm glad he has you there with him.  There's nothing better than having mom take care of you when you're sick.



#15 natesmama

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Posted 14 October 2011 - 01:19 PM

HELLO EVERYONE.

       I HAVE BEEN LURKING AND READING AND TRYING TO UNDERSTAND THE PROGRESSION OF THE DISEASE IN DIFFERENT PEOPLE...HOW THE GLEEVEC AFFECTS PEOPLE AND SO FORTH. YESTERDAY NATHAN'S CBC WAS COMPLETELY NORMAL. HIS WHITE, RED AND PLATELETS ALL WITHIN NORMAL RANGE , AND HIS SPLEEN IS NEARLY BACK TO NORMAL SIZE AS WELL.  2 WEEKS AGO HE BEGAN TO EXPERIENCE MAJOR EDEMA IN HIS LEGS, AND FEET, SO LAST WEEK THE DOC ADDED A DIURETIC AND CUT HIS GLEEVEC FROM 600 MG TO 400 MG. HE HAS NOT REGAINED HIS HEARING, AND HIS EYESIGHT IS BEING AFFECTED. HE STILL EXPERIENCES TIMES OF DIZZINESS AND HEADACHES, BUT HE SAYS HE CAN HANDLE IT. HE DOESN'T HAVE A CAR HERE IN THE CITY AND USES PUBLIC TRANSPORTATION, SO HE DOESN'T HAVE TO WORRY ABOUT DRIVING. THE HOSPITAL HERE ISN'T COVERED BY HIS INSURANCE FOR BMT, AND HIS DR REALLY FEELS THAT NATHAN WILL NEED ONE AT SOME POINT, SO I BELEIVE WE WILL BE TRAVELLING TO ANOTHER HOSPITAL FOR NATE TO BE EXAMINED AND GIVEN THEIR OPINION AS TO WHETHER HE WILL NEED ONE OR NOT.

     I AM STILL HERE WITH HIM, BUT PLAN TO LEAVE AND GO HOME IN NOVEMBER.

  OH YEAH, HAS ANYONE ELSE ON HERE HAD NIGHT SWEATS AFTER THE CML WAS UNDER CONTROL?

                                                                                                                                                                                                            THANKS FOR READING, PAT



#16 CallMeLucky

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Posted 14 October 2011 - 01:26 PM

The night sweats are a common complaint, so by themselves I wouldn't be too worried about that.  Let the doctor know if the persist or get really bad.

I'm not sure how you get from normalized counts and reduction in dosage of drug to needing a SCT.  Perhaps seeing another doctor is not a bad idea.  SCT should be last option.  If he is responding well to therapy, that should be the focus for now.

Glad he is starting to come around and feel a bit better and that the drugs are working.


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%
 

 


#17 GerryL

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Posted 14 October 2011 - 01:47 PM

Hi Pat,

Good to hear from you again and great to hear Nate's counts are in the normal range again. I guess I'm a bit surprised with the doc talking about a BMT already when there are a few more drugs to try out if Gleevec doesn't work for Nate. I would definitely be getting a second opinion.

As to Nate's side effects - a few people here experience the night sweats as a side effect of the TKI and there are a few suggestions on one of the discussion threads that people might like to do to help counter it - mainly with sheets and clothing etc.

I get edema mainly in my ankles (as I take my Gleevec in the morning and then sit at a desk all day), I've also tried to lower the salt in my diet - though I was never a big salt user to begin with. Nate should also make sure he drinks enough water throughout the day which will help flush the salt out. I take a diuretic when required. Nate should ensure they are keeping an eye on his potassium levels whilst taking the diuretic. I'm not sure if Tasigna has edema as a side effect.

Do they believe his hearing loss; eyesight issues; headaches and dizziness are related to his CML?



#18 natesmama

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Posted 14 October 2011 - 02:19 PM

THE HEARING LOSS WAS DEFINITELY THERE BEFORE HE WAS DIAGNOSED AND HASN'T IMPROVED SO, HE WILL BE SEEING AN ENT TO DETERMINE WHAT IS CAUSING IT. WE DISCOVERED HE HAD SEVERE MYOPIA AND SOME OTHER ISSUES WITH HIS SIGHT WHEN HE WAS TWO YEARS OLD. HE WEARS CONTACTS BUT EVEN WITH THEM IS NOT ABLE TO BE CORRECTED TO 20/20. NOW...SINCE THE GLEEVEC HE HAS SOME BLURRINESS AND HE SAID HIS CONTACTS HAVE A WHITE FILM ON THEM WHEN HE REMOVES THEM AT NIGHT AND THAT WAS NEVER THERE BEFORE. HE WAS EXPERIENCING A LOT OF DIZZINESS AND LIGHT-HEADEDNESS BEFORE DX. IT NEVER REALLY LET UP, SO WHETHER IT IS FROM THE CML OR NOW FROM THE GLEEVEC, WHO KNOWS? WE ARE PRETTY SURE THE HEADACHES OR PRESSURE ARE FROM THE GLEEVEC.

I AM CURIOUS AS TO WHY PEOPLE ARE SO AGAINST A BMT? I KNOW IT IS RISKY BUT LIVING WITH CML AND TAKING THE MEDS IS NO PICNIC, EITHER.

THANKS FOR ALL OF YOUR HELP.



#19 CallMeLucky

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Posted 14 October 2011 - 03:02 PM

As one of the first oncologists I met said, regarding SCT, "you'll never be the same again".

A SCT is a risky procedure and while many people do survive the process there are things to be considered post transplant that can be equal or more sever to TKI treatment.

SCT as a life saving procedure certainly makes sense, but to electively have one as an alternative to life long TKI is risky.

http://www.cancer.go...rrow-transplant

The major risk of both treatments is an increased susceptibility to infection and bleeding as a result of the high-dose cancer treatment. Doctors may give the patient antibiotics to prevent or treat infection. They may also give the patient transfusions of platelets to prevent bleeding and red blood cells to treat anemia. Patients who undergo BMT and PBSCT may experience short-term side effects such as nausea, vomiting, fatigue, loss of appetite, mouth sores, hair loss, and skin reactions.

Potential long-term risks include complications of the pretransplant chemotherapy and radiation therapy, such as infertility (the inability to produce children); cataracts (clouding of the lens of the eye, which causes loss of vision); secondary (new) cancers; and damage to the liver, kidneys,lungs, and/or heart.

With allogeneic transplants, GVHD sometimes develops when white blood cells from the donor (the graft) identify cells in the patient's body (the host) as foreign and attack them. The most commonly damaged organs are the skin, liver, and intestines. This complication can develop within a few weeks of the transplant (acute GVHD) or much later (chronic GVHD). To prevent this complication, the patient may receive medications that suppress the immune system. Additionally, the donated stem cells can be treated to remove the white blood cells that cause GVHD in a process called "T-cell depletion." If GVHD develops, it can be very serious and is treated with steroids or other immunosuppressive agents. GVHD can be difficult to treat, but some studies suggest that patients with leukemia who develop GVHD are less likely to have the cancer come back. Clinical trials are being conducted to find ways to prevent and treat GVHD.

The likelihood and severity of complications are specific to the patient's treatment and should be discussed with the patient's doctor.


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%
 

 


#20 tranier

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Posted 14 October 2011 - 04:13 PM

Hi..please use what we have learned from BJ s journey to guide you....

  1.  See a CML specialist..if not one local then get w one for second opinion and be sure all testing sent to him,her too

  2.  Most CMLrs  will not need a SCT..there are TKI choices...try them all if need be

  3.  Sign up on Be the Match esp if insurance covers it...and know if you have matches..if God forbid you would need it in future...It is a 4 month process at best, and in BJs  case losing our first donor led to what looks like a 2nd relapse and a month's delay as second donor had work-up

4.  Get a 2nd opinion...always...way to much data and amazing specialists to not take advantage of

5.  Be more aggressive than the CML!!!!!!!!!!

6...7..8..9..10...ASK QUESTIONS!!!!!   If you don't know what to ask...seek advise here...

hope this helps...Peace and prayers to all






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