63 replies to this topic

[Susan61]

Hi Pat:  Glad to see the good news about Nate.  A lot of people have complained about the night sweats on and off.  It seems like you find new side effects at different times, and they are not always constant in some cases.  Please keep us updated, even after you go back home in Novemember.  I will continue to pray for Nate and his great response.

Susan

[GerryL]

I think there have been a few people on the board who have experienced drier eyes from being on Gleevec, which may explain his issues with contacts. It might be worthwhile for Nate to talk to his next doctor about changing TKIs - one of the others might be easier on him side effect wise and they also work faster on the CML than Gleevec.

[Happycat]

Personally, I'd rather try all the available TKIs first before going for SCT.  I'd definitely see another oncologist (preferably a CML specialist) if his current one says a BMT is in his future.  He hasn't been on any TKI long enough to really know, unless there was something about his diagnostic results that say otherwise.

Traci

[natesmama]

    I FEEL AS THOUGH I HAVE GIVEN THE WRONG IMPRESSION ABOUT NATE'S ONC. I INSTIGATED A DISCUSSION ABOUT BMT WHEN WE WERE AT THE OFFICE THE OTHER DAY. HE SAID IT IS A WORST CASE SCENARIO OPTION. I BELEIEVE THAT BECAUSE NATHAN WAS SO SICK AT DX HE JUST WANTS ALL OF THE DATA AVAILABLE. HE WANTS DONORS PREPARED, NATHAN'S HISTORY AND EVALUATION ON FILE AT THE BMT FACILITY,  AND NATHAN AND I TO UNDERSTAND ALL ABOUT IT. HIS HOPE IS THAT NATHAN WILL NEVER NEED A BMT. THE FACILITY WHERE WE WILL GO FOR THE EVALUATION HAS CML DRS THAT WILL CHECK EVERYTHING OUT AND DETERMINE THAT HIS ORIGINAL DX WAS ACCURATE AND TO SEE WHAT STAGE HE IS IN NOW. I PROBABLY CAN'T REALLY UNDERSTAND THE HORROR OF WATCHING A LOVED ONE GO THROUGH A BMT. I TEND TO FOCUS ON HOW I HATE TO SEE HIM FEELING MISERABLE AND ADDING NEW MEDS TO HIS DAILY REGIME TO COUNTERACT THE SIDE EFFECTS OF GLEEVEC AND  JUST  GET THROUGH EACH DAY.

    EVEN AT DX WITH HIS WHITE COUNT OVER 600,000, HEARING LOSS, DIZZINESS, BLOATED FEET, ETC ETC, HE SMILED, SAID "I'M FINE" TO THE POINT THAT THE HOSPITAL KEPT RERUNNING TESTS TO MAKE SURE THAT WHAT THEY WERE SEEING WAS REAL. DRS AND NURSES LATER TOLD US THEY SAW NATHAN'S CHART AND DREADED COMING INTO HIS HOSPITAL ROOM THE FIRST TIME FOR FEAR OF WHAT THEY'D SEE. INSTEAD HE WAS NORMALLY SITTING UP IN BED WITH A SMILE ON HIS FACE AND LOOKING HEALTHY AND HAPPY.

   NOW HE LOOKS AHEAD WITH SOME DREAD TO A LIFE OF PILLS AND MEDS AND DR'S APPOINTMENTS. WE NEED TO FOCUS ON THE FACT THAT THERE ARE TKI'S AND RESEARCH AND HIS BODY DID RESPOND WELL AND HE IS ABLE TO WORK. DIFFICULT TO DO SOMETIMES.

    THANK YOU ALL FOR YOUR INPUT!!                                                                                                                                                                              PAT

[Susan61]

Hi Pat:  Sounds like your between a rock and a hard place as they say.  I do think some have to have the BMT due to their circumstances.  You can go back to one of my older posts, but basically when the routine treatment did not work for me back in 1998 they had me in having a BMT with a unrelated donor.

I had no match.  Then when I applied for the clinical trial for the Gleevec in 2000, and this was after seeing some top transplant doctors to get opinions.

The doctor who was running trial in N.Y. did not hesitate to tell me that he would not put me through a BMT when I had Gleevec to try first.  He felt it was the lesser of two evils for me.  Here I am still on Gleevec 11 years later.  Yes, I do still get side effects from it.  I might not see a cure in my lifetime, but I really believe all the younger people will get to see it happen.  Each year that passes new breakthroughs are being made for CML specifically.  New things are being introduced.  If Nate is doing that well, then give it a chance before considering a BMT.  Hope this helps you somewhat.

Susan

[Trey]

For CML a BMT is done is when TKI drugs (all of them) fail to control the CML and it progresses to advanced stages, or the person is diagnosed in Blast Phase.  Nate's condition at diagnosis was dire, but he was likely still in Chronic Phase.  This may sound odd, but they are two different things.  Others who were not in a dire condition may have been diagnosed in Blast Phase.  One is a non-CML issue (in the sense of tissue damage, although caused by the CML) and one is a direct CML issue related to how the leukemic cells function (aggressive vs non-aggressive).

Nate lost his hearing and damaged other tissue by having blood as thick as molasses.  Those are now medical issues, but not CML issues related to Phase.  If the TKI drugs work, then Nate will respond well to them and can control the CML.  Whether the damaged tissues will be restored is another matter.  Maybe they will be over time.  These things are unpredictable.

Taking TKI drugs for the long term is seen by some as a heavy weight around the neck.  Others see it as a lifeline.  Sometimes it is a matter of perspective.

[GerryL]

Hi Pat,

I tend to think of the TKIs as a means to an end i.e. they keep the CML at bay until the scientists come up with a cure. For me I now only see my Hematologist twice a year and though I get a few side effects, they are reasonably manageable.

Hopefully Nate continues to improve and as he does he will regain some optimism about life again. The diagnosis itself is enough to make you feel like your life is spinning out of control, but the issues he has had along with it would make it seem doubly so.

Take care.

[natesmama]

HEY EVERYONE.

   IT HAS BEEN A WHILE SINCE I HAVE UPDATED NATHAN'S STATUS SO I THOUGHT I'D WRITE SOME THINGS TONIGHT. I HAVE RETURNED HOME FOR NOW BUT BEFORE I CAME HOME, NATHAN AND I WENT TO THE "JAMES" HOSPITAL IN COLUMBUS, OHIO FOR A CONSULTATION IN CASE HE EVER NEEDS A BMT. THE DOCTOR WE SAW THERE SAID SHE HAD NEVER SEEN NATHAN'S RECORDS BEFORE WE GOT THERE AND KIND OF RIDICULED THE SLIDES AND NOTES WE HAND CARRIED THERE AS A BACK-UP. SHE SAID SHE DOUBTED VERY MUCH THAT NATHAN HAD CML IN THE ACCELERATED STAGE. SHE SAID SHE DOUBTED HE'D NEED A BMT AND SHE CERTAINLY WOULD'T ADVISE ONE. SHE DID ORDER SOME BLOOD TESTS. NATHAN'S WBC HAS DROPPED TO 2900 FROM THE HIGH OF 640,000 SINCE SEPT 3RD.

   WHEN HE WENT TO HIS ONCOLOGIST FOR THE NEXT APPOINTMENT AFTER OUR TRIP TO COLUMBUS HIS DR SAID THAT THE TESTS TAKEN IN COLUMBUS VERIFIED THE CML ACCELERATED DIAGNOSIS. APPARENTLY THE GLEEVEC IS KILLING OFF WHITE BLOOD CELLS BUT NOT PREVENTING THE DEVELOPMENT OF NEW "BAD" CELLS. HE SAID NATHAN NEEDS TO BE ON A STRONGER DOSE OF GLEEVEC BUT SINCE  HIS BODY IS RESPONDING LIKE IT IS WITH THE 400MG DOSAGE HE DOESN'T DARE RAISE IT. HE PRETTY MUCH SAID A BMT IS INEVITABLE. NATHAN'S 3 SIBLINGS JUST DID THEIR TESTS TO SEE IF THEY ARE COMPATIBLE MATCHES FOR A TRANSPLANT. EACH ONE IS HOPING AND PRAYING THAT THEY ARE A MATCH. I WISH MOMS COULD MATCH.

   THE GOOD NEWS IS HIS SPLEEN IS NEARLY BACK TO NORMAL, HE LOOKS LESS EMACIATED, HIS PULSE IS MORE EVEN, HE CAN EXERCISE SOME WITHOUT GASPING FOR BREATH, AND HE IS ABLE TO WORK. ON THE DOWNSIDE, HE NOW TAKES 4 MEDS TO COUNTER-ACT THE SIDE-EFFECTS OF THE GLEEVEC, STILL SUFFERS HEARING LOSS AND FIGHTS DEPRESSION AND FATIGUE.  BUT HE IS ALIVE AND THERE IS MUCH HOPE!!!

[janne]

Nate's Mama,

God Bless you and your family as you walk though this !  Do know that we are all believing, praying and hoping right along with you ! There are so many on this site who have had such a struggle in the beginning and they can certainly empathize with your son's journey and can offer words of wisdom, strength and hope to you ! We are cheering you on Nate !

Janne

[Ludwigh]

Hello Nate's Mom, I think the important thing here is not to get too hung up on the phase at diagnosis. As long as he was not in Blast Crisis and does not have extra mutations or translocations than the original Philadeplia chromosome that render all forms of TKI's useless or makes the desease unstable. The key is how he respounds to the TKI's, not so much what phase he was diagnosed in. There are other forum members who were diagnosed in Acc. phase and are doing fine.

I was diagnosed over three years ago. I had a platelet count of 1.2 million, White Blood Cell Count was at 200,000. Blasts at 8% and basophils as 22%. I was diagnosed at borderline accelerated, phase. I was on Gleevec for one year and then my platelets started to rise, the CML (BCR/ABL) came back slowly, with no rise in blasts.  A mutation was found (probably there since diagnosis) that respounded weekly to Gleevac. I was switched to Sprycel and within 4 months I was PCRU and have remained there ever since. I am hearing of trials that people who have been PCRU for two year or more regardless of phase are being tapered off Sprycel and are remaining either desease free or at least it is staying at a very low level. This gives us all great hope. Not sure if I would take that leap as the side effects have been very minimal.

Check out www.newcmldrug.com as there is lot of members on there who were diagnosed at different phases and many have dealt with it for many years and some have went throught 3 or 4 different threatments before finding the one that worked. There is even a member that sprycel brought him back from blast crisis with Chloromas (White Blood Cell Tumors) and he is doing fine. These drugs have worked wonders for most.

As far as the Stem Cell Transplant, it is a risky proceedure and I would only look at as a last resort. It is much improved from even 5 years ago and improving all the time, however there is a lot of things that can go wrong. There has been a few members of this forum, that after finding that the TKI's did not work, had to proceed to transplant. Most are okay and have moved on and do not post on the forums anymore. An option of treatment, however it should be reserved only when all other treatments have been explored.

Hope and Light,

Terry

[Trey]

You should ask the Onc to explain why he believes the following are true:

"HIS DR SAID THAT THE TESTS TAKEN IN COLUMBUS VERIFIED THE CML ACCELERATED DIAGNOSIS" -- You did not indicate that a Bone Marrow Biopsy was done at the Columbus hospital, so how did "blood tests" confirm an Accelerated Phase diagnosis?  That is not possible without a BMB (especially after the WBC and spleen have returned to normal).

"HE PRETTY MUCH SAID A BMT IS INEVITABLE." -- Why?  What part of Nate's diagnosis shows that he has long term high risk factors?  The high initial WBC is not the primary indicator of CML Phase.  It is important to understand the "why" part of this, since entering into a transplant should normally be a last resort.

"APPARENTLY THE GLEEVEC IS KILLING OFF WHITE BLOOD CELLS BUT NOT PREVENTING THE DEVELOPMENT OF NEW "BAD" CELLS." -- That is just the way the drugs work for all of us.  Nothing unusual in that.

[ritan/]

if i were you and nate, i'd seriously consider a new oncologist. you've gotten a second opinion that basically said, your son's Dx was not accelerated stage CML that needed a transplant. it sounds to me like your son is responding reasonably normally to Gleevec. i'm living with a whole host of side effects. none are fun, but most are livable. depression is not an unusual result of a diagnosis with a very serious chronic disease. i went to counseling. it helped a lot.

part of what you need is to see the actual records of all the tests that were done upon diagnosis in order to really know whether he is at accelerated stage or not.

as a general rule tho: BMT is not inevitable for anyone as far as i can tell. there are some people who respond poorly to the various meds that are currently available, but generally speaking people go through all the available meds to see if they will work before even looking at BMT. (i guess there are specific cases where from the number of mutations, it is obvious from the beginning that BMT is the only option--but even then you and your son need the information to be clear about WHY they believe BMT is the only option)

By the way: it is really hard to read all capital letters. You should probably take your caps lock OFF so that it is easier for everyone to read AND it doesn't appear you're yelling (on the internet all capital letters is often read as yelling).

[CallMeLucky]

I'm sorry, but I'm a bit confused. If I understand what you wrote, you are saying that you weant to see a specialist for a second opinion, the specialist said it is not Accelerated phase and a transplant was not recommended. Then you went back to the local oncologist who said it is accelerated phase and he will need a transplant, in spite of the fact he is responding to treatment.

This was what my doctor warned me about when I went for my second opinion.  She said I could stay with the local doctor and he could contact her for advice on my case, but if he didn't agree then I would be on the treatment plan the local oncologist wanted.  That is why I decided to be treated by the specialist.

Something about this local oncologist you have just doesn't sound right.

[natesmama]

HI GUYS,

    OK SOME HOW EVERYTIME I GET ON HERE AND WRITE I FEEL LIKE I HAVE WRITTEN IN A LANGUAGE THAT ISN'T UNDERSTOOD, AND SINCE YOU  ALL HAVE BEEN HERE LONGER THEN I, I GUESS IT IS MY WRITING THAT IS CAUSING THE MISUNDERSTANDING AND CONFUSION. SO I AM GOING TO TRY TO START OVER OR CORRECT THINGS OR SOMETHING.

    1. NATHAN IS MY 31 YEAR OLD SON.

    2  HE WAS DIAGNOSED WITH CHRONIC MYLOID LEUKEMIA SOMETIME IN THE FIRST COUPLE OF WEEKS OF SEPTEMBER.

    3  HE WAS TOLD HE WAS IN THE ACCELERATED STAGE, VERIFIED BY TESTS THEY HAD DONE ON HIS MARROW.

    4  THERE WAS NO LIQUID IN HIS MARROW SO THEY COULD NOT DO A FISH TEST.

    5. HE WAS PRESCRIBED 600 MG PER DAY OF GLEEVEC.

    6. MOST OF HIS SYMPTOMS DISAPPEARED RAPIDLY

    7. WHEN HIS SIDE AFFECTS GOT WORSE AND HIS WBC DROPPED HE WAS PUT BACK TO 400MG OF GLEEVEC.

    8. THE TEAM OF ONCOLOGIST/HEMATOLOGISTS BEGAN TALKING TO HIM ABOUT BMT AS SOON AS HE WAS DIAGNOSED.

    9. BECAUSE THE HOSPITAL THERE WS NOT ON HIS INSURANCE'S LIST OF PREMIER TRANSPLANT HOSPITALS HE WAS REFERRED TO THE JAMES          CANCER HOSPITAL IN OHIO.  

  10. AS I SAID BEFORE, THE DR WE SAW THERE IN OHIO HADN'T READ NATHAN'S CHART OR HISTORY AND HAD NOT LOOKED AT THE PATHOLOGY           SLIDES OF NATHAN'S MARROW THAT HAD BEEN SENT, SO SHE DOUBTED THE DIAGNOSIS. HOWEVER AFTER SHE HAD A CHANCE TO STUDY             THEM AND READ THE HISTORY, SHE CONCURRED WITH THE FLORIDA DRS........I HAD SAID THAT SHE CAME TO THAT CONCLUSION AFTER THE           BLOOD TESTS THEY TOOK THERE, FORGETTING ABOUT THE SLIDES.

  11. ALL OF NATHAN'S SIBLINGS HAVE BEEN TESTED AND NONE ARE MATCHES.

   12  THEY ARE GOING TO BE CHECKING THE REGISTRY OVER THE WEEKEND.

  13. HIS WBC IS DOWN TO 2800 AND HIS PLATELET COUNT HAS STARTED TO DROP.

   14  HE HAS HAD A MILD COLD FOR TWO WEEKS, AND HE IS FATIGUED.

  15. GOOD NEWS? YEAH...HE IS OFF THE DIURETIC AND THE HEART MEDS, AND THE EDEMA AND HEART RATE ARE GOOD.

   16. I KNOW THAT WRITING IN CAPS IS CONSIDERED SHOUTING ON THE COMPUTER, BUT I CAN SEE MY TEXT BETTER AND IT IDENTIFIES ME. MAYBE         I AM SHOUTING........ AFTER ALL I CAN'T DO IT FOR REAL

    17. THANKS FOR READING, AND CARING.

[natesmama]

I JUST REREAD YOUR RESPONSE AND I WANT TO THANK YOU FOR THE HOPEFUL TONE OF YOUR LETTER. IT IS HEARTENING TO READ OF THOSE WHO WERE REALLY BAD AND HAVE RESPONDED. I PUT IN A CALL TODAY TO NATHAN'S DOC TO ASK HIM WHY THEY WEREN'T TRYING THE OTHER TKIS ON NATHAN. HE WASN'T THERE BUT I WAS ASSURED THAT HE WILL CALL ME BACK. I GUESS THE HARDEST THING IS BEING SO FAR AWAY AND KNOWING THAT HE DOESN'T REALLY HAVE ANYONE NEARBY. ANYWAY, THANKS FOR THE ENCOURAGEMENT FROM EVERYONE.

[GerryL]

Hi Nate's mom,

We can understand that it can be as hard on the partner/parent/child/sibling of the person with the diagnosis, particularly when you're far away from your loved one

Figured there must have been a reason why you were using caps all the time (apart from feeling the need to yell at the injustice of it all).

Putting together dots points for what is happening with Nate is probably the way to go as he has a bit going on.

Let us know what the doc says about trying another TKI.

By the way, pop your name in at the bottom of your message - you are part of Nate's journey and need support as well.

Take care

Gerry

[natesmama]

HI EVERYONE.

    HOPE YOU ALL HAD A WONDERFUL CHRISTMAS AND THAT 2012 IS TREATING YOU WELL. I WILL TRY TO UPDATE YOU ON NATE, BRIEFLY. A COUPLE OF WEEKS AGO HE WOKE UP WITH A VERY SWOLLEN ARM. HE SAID IT LOOKED PRETTY MUSCULAR AND GOOD BUT SINCE IT DIDN'T MATCH THE OTHER SIDE IT WAS PROBABLY NOT A GOOD THING. OF COURSE, HE GOT DRESSED AND WENT TO WORK, BUT HIS COLLEAGUE TOOK ONE LOOK AND SAID "CALL YOUR DR OR I WILL". HE CALLED, THE DOC, AND FEARFUL OF A BLOOD CLOT THE DR SAID FOR HIM TO GO TO THE OFFICE SO HE COULD ORDER A VENUS DOPPLER TEST. THAT WAS NEGATIVE SO THEY ADMITTED HIM AND STARTED TREATING HIM FOR CELLULITIS. HE WAS IN 2 FULL DAYS TO GET IV ANTIBIOTICS  THE NEXT WEEK THE DR HAD HIM COME IN FOR A CHECK UP. THEY RERAN ALL OF THE BLOOD TESTS THAT THEY RAN AT DIAGNOSIS. THE RESULTS WERE THE SAME. ALSO WHEN HE WAS IN THE HOSPITAL THEY DISCOVERED THAT HIS LIVER IS BEGINNING TO REACT POORLY TO THE GLEEVEC.  THEY HAD HIM GO OFF IT FOR 3 DAYS TO GIVE HIS BODY A LITTLE REST. HE SAID HE HAD FORGOTTEN HOW GOOD HE FELT WITHOUT IT. SOOOOOO......THAT IS THE LATEST NEWS. I AM ANXIOUS TO GET BACK DOWN THERE AND SEE HIM FOR MYSELF!!!!

THANKS AGAIN FOR ALL OF THE SUPPORT AND KNOWLEDGE THAT I GAIN FROM THIS SITE.                                                           

                                                                                                                                                              SINCERELY,

                                                                                                                                                         NATESMAMA  PAT

[GerryL]

Hi Pat,

I'm so sorry to hear Nate's having more issues. I can understand how anxious you must be, being so far away from him and hope you are able to get there soon. Are the doctors considering switching Nate to Sprycel?

Gerry

[hannibellemo]

Hi, Pat,

Liver toxicity on Gleevec is not unheard of but it is one of the more rare side effects so, of course, I developed it. One day my AST/ALT were around 20 and the next check up they were 80 and three weeks later they were 1200! I felt fine BTW, the only indication that things were not as they should be was the increase in the ALT/AST, my liver was not enlarged or showing any other signs of damage according to a cat scan - I didn't have a biopsy. I was immediately taken off Gleevec (this was in my 8th month of taking Gleevec) and after my enzymes returned to normal (about 7 weeks) I was put on Sprycel. Sadly, just when I was taken off G my tests showed as I was, for all practical purposes, CCyR.

I've been on Sprycel since 10/2009 and MMR since 8/2010. My counts at dx were WBC 348,000 and PLT 1.25 million.

Your son has a serious case of denial and it's fortunate for him that he has a great mom and good friends and colleagues looking out for his best interests. I know how hard it is for you because I have a son who is struggling with addiction. If we could only live their lives for them it would be so much easier on us!

Holding you both close in my thoughts,

Pat (one to another)

[natesmama]

HI GUYS.

      HERE IS THE CAPS LADY, IRRITATING YOU ALL BY 'YELLING" AT YOU. THOUGHT I'D GIVE YOU AN UPDATE ON NATE. WHEN HE WENT BACK TO HIS ONC AFTER HIS HOSPITAL  THEY DREW A LOT OF BLOOD AND RAIN SEVERAL TESTS. ONE WAS A FISH TEST. HIS DOC CALLED HIM A WEEK LATER TO TELL HIM THAT ACCORDING TO HIS TEST RESULTS, THE GLEEVEC DIDN'T SEEM TO BE DOING ANYTHING TO TO ACTUALLY TREAT THE DISEASE.  HE HAD HIM RETURN IN 4 WEEKS FOR A CHECK-UP AND CBC. THAT WAS LAST MONDAY. HIS PLATELETS HAD PLUMMETED. THEY WERE ABOUT 28,000. THEY HAD NATHAN GO OFF THE GLLEVEC FOR 9 DAYS AND TODAY HE WENT FOR ANOTHER CBC. THE PLATELETS HAD DROPPED LOWER, THOUGH NATHAN DIDN'T TELL ME HIS COUNT. HE SAID WBC AND HEMOGLOBIN WEREN'T "TOO BAD"  THE DR WAS UPSET AND ORDERED A BMB TOMORROW. NATHAN HAD ASKED HIM LAST WEEK ABOUT TRYING ONE OF THE OTHER TKI'S. HE SAID I HAVE CONSIDERED THEM BUT YOU ARE NOT A GOOD CANDIDATE. I WISH I WAS DOWN THERE TO STICK MY NOSE IN!!!!!!!!!

   ALSO SOMETHING ELSE I HAD FORGOTTEN OR WAS UNAWARE OF THE SIGNIFICANCE....WHEN NATHAN WAS ORIGINALLY DIAGNOSED, BACK IN SEPTEMBER, ONE OF THE REASONS HE WENT TO THE DR WAS BECAUSE HE HAD A LARGE SWELLING ON THE TOP OF ONE FOOT THAT WE THOUGHT WAS A BUG BITE. THEY LANCED IT AND DID A BIOPSY  OF THE BLOOD INSIDE IT AND IT CONTAINED LEUKEMIA CELLS. NATHAN SAID THAT ONE OF HIS DRS TOLD HIM THAT THAT IS HOW THEY KNEW HE WAS IN ACCELERATED STAGE AT THE TIME.  DOES THIS MAKE SENSE?

   I READ AND READ AND READ ON THIS SITE AND THE MORE I READ THE DUMBER I FEEL. IN FACT AS I READ OVER SOME OF MY OWN PREVIOUS POSTS, I REALIZE THAT ON SOME POINTS I REALLY DIDN'T KNOW OR UNDERSTAND WHAT I WAS TALKING ABOUT.  THANKS FOR THE GRACIOUSNESS OF EVERYONE WHO CONTRIBUTES.

    ANYWAY, ANY KNOWLEDGE, HELP AND PRAYERS ARE APPRECIATED.

   THANKS

                                                                                                                                                            NATESMAMA, PAT