63 replies to this topic

[Trey]

Anyone who does not respond well to Gleevec is a "good candidate" for either Sprycel or Tasigna.  Nate should demand a switch in drugs or a switch Oncs.  Probably both.  For Nate I would suggest Sprycel.  The mass of leukemic cells in tissue is called a Chloroma.  It is possible that is the issue with his arm.  It can be one sign of disease acceleration if there are other signs as well, such as high blast count, etc.  He needs to switch drugs right away.

[natesmama]

THANKS TREY, THEY JUST ADMITTED HIM FOR A PLATELET TRANSFUSION AND THE BMB. DO YOU HAVE ANY KNOWLEDGE OR PROTOCEL? ONE OF OUR FRIENDS KEEPS PUSHING IT AS AN ALTERNATIVE TREATMENT PLAN.

[Happycat]

Pat,

I agree w Trey. Time for a new drug and new onc. Quickly, too. I don't know why his onc would tell him he's not a good candidate for tasigna or sprycel. Definitely seek a second opinion with a specialist in Cml.

I understand the mama bear desire to get pushy and protect your cub. Run with it. Maybe your son is not feeling well enough to move to a new onc on his own?  Takes energy, maybe he needs a little help?  I know when I was really sick w e coli, I was not a good advocate for myself. Just felt too sick to argue. Might be an issue for him. Can you be a pushy mom and just, oh, research and contact some oncs for him? 

Traci

[Trey]

Protocel (Cancell) is just another vitamin.  It was tested by the FDA years ago and found to be ineffective in treating cancer.  Our disease is a genetic mix-up, not a vitamin deficiency.  Nothing wrong with vitamins, and I take the standard vitamins for general nutrition, but not for any other reason.  The TKI drugs are the real miracle, so why look for another? 

[GerryL]

Hi Pat,

This must be so hard on you emotionally - prayers and (((hugs))) to both you and Nate.

If it was me I would be looking to change doctors and TKIs. I haven't changed TKIs (touch wood), but have changed my specialist to someone I was more comfortable with. One of the main things I have learned from my CML experience is that you have to be your own Advocate or if you aren't able, have someone in your corner who can take this on. Are you able to get back over to him as it sound like he needs some help in dealing with the doctors?

[NotJack?]

Hi Nates mom,

Yell all you want, this is the place to do it!  Listen to Trey, he gives good counsel.  Get a CML specialist,  people will recommend someone in your area to go to. This does not mean that you lose the general onc that you have unless you want to.  I have a specialist at the Mayo clinic who has been the head of their transplant team, and a leader in CML.  He works in tandem with my general onc in my town.  A specialist should call the shots for Nate on this one.  No doubt,  you guys are just getting to many mixed messages by the sound of it.  If I misinterpreted anything, I apologize.  Get copies of all of Nates back tests, and get copies of his new tests at the time they are taken.  Educate yourself on the numbers.  I stick around the 20 minutes to receive mine in hand after blood work and EKGs. .  Then refer to Trey's Blog or throw them up here, to validate what you are told.  If they tell you to let them handle it and suggest that you don't continue to educate yourself, get a new general oncologist!  These TKI drugs work.  This is the cancer that seems the most likely to cure,  and the TKIs are always improving.  I am back playing hockey after being dx in August.  My general onc wanted to fiddle with my drug dose almost immediately, and then when i was neutapenic, my hired gun settled everyone down, and called for continuance.  These guys deal with this everyday, all day, and only this.  Sorry if my comments are out of line, this is all an education that never ends, you have to be your own advocate.  Ok, I will shut up and go back to listening, the others are much more eloquent than I.  Hi to Nate,  Jack

[natesmama]

THANKS ALL. I WILL KEEP TRYING

[natesmama]

TREY DO YOU OR ANYONE UNDERSTAND THIS: THEY ADMITTED NATE YESTERDAY, GAVE HIM 6 UNITS OF PLATELETS OVERNIGHT AND PERFORMED A BMB THIS MORNING. THEY DOC WALKED THE SAMPLE TO THE LAB HIMSELF, HE SAID THEY COULD HAVE RESULTS TODAY. WHEN HE FINALLY GOT BACK TO THEM THIS EVENING, HE SAID THAT THE MARROW WAS TOO DILUTED SO THEY WERE GOING TO HAVE TO EXAMINE THE BONE TO GET THE RESULTS.  WHAT DOES THAT MEAN? ALSO, HOW SOON DOES THE PLATELET COUNT RISE AFTER RECEIVING A PLATELET TRANSFUSION. THEY DISCHARGED HIM BUT HE HAS TO GO BACK TO THE DR MONDAY.

                                                                                                                                                   THANKS,  PAT

[Trey]

The marrow being "too diluted" means he has very few cells in the marrow (hypocellular).  So apparently he is not producing many blood cells.  That makes a cytogenetics analysis difficult to do.  "Examine the bone" means that they will examine the bone fragment that was taken out when the needle pierced through his hip.  The BMB needle is hollow, and it cuts out a round core sample of the bone and cells that cling to it as it goes through the hip bone.  That may have some clues.

The platelet infusions are an immediate change.  The only issue is that the spleen "sequesters" (grabs and holds) platelets and only lets them out when it thinks they are needed (bleeding).  So the actual blood platelet count may not be very high, but as long as the spleen has enough, it should be fine. 

[natesmama]

THANKS TREY!!!!!

[natesmama]

NATHAN WENT TO THE DOC WEDNESDAY TO GET RESULTS FROM HIS LAST BMB AND THEY SAID THEY COULDN'T DETERMINE A DIAGNOSIS FROM THE SAMPLE SO HE GOES FOR ANOTHER BMB MONDAY. HIS PLATELETS WERE STILL LOW, 21, EVEN AFTER A TRANSFUSION.

[GerryL]

Hi Pat,

Poor Nate - having to have a BMB is bad enough without having to have a repeat so close to the other one.

[natesmama]

SINCE NATHAN'S LAST BMB WAS INCONCLUSIVE, THEY DID ANOTHER TODAY. HIS PLATELET COUNT IS DOWN TO 14000 SO THEY ARE ADMITTING HIM TO TRANSFUSE. I AM REALLY CONCERNED.                                                                                                                    PAT

[Happycat]

Sorry, Pat, I don't know enough about this to comment on the platelets, but I can understand how worried you must be. Are you there with him?  Or are you only getting info over the phone?  Are you getting it from Nate or the doctor directly?  That's the advantage of being there, you can listen in and comment, ask questions.

My best wishes to you and Nate.

Traci

[natesmama]

HEY TREY, I'VE GOT SOME MORE QUESTIONS. WHAT OTHER CHROMOSOME CAN BE INVOLVED IN CML? IN NATHAN'S MOST RECENT BMB THEY SAID THEY FOUND A THIRD CHROMOSOME INVOLVED THANKS FOR ANY INFO...............PAT

[Trey]

You will need to get some clarification, since the "third chromosome involved" could mean one of several different things.  One possibility is that Nate's Philadelphia Chromosome is a 3-way translocation.  So instead of just 9 and 22 swapping pieces, a third chromosome could have gotten in the middle, such as chromosome 15 for example; then the Philadelphia Chromosome would be a 9, 15, 22 translocation instead of the standard 9,22 translocation (15 is just an example, and there could be several other possible third chromosomes involved, if this is what the Onc meant).  Another possibility is that Nate has some other chromosome mutation outside of the Philadelphia Chromosome, such a Trisomy 8 (an extra copy of chromosome 8) or Monosomy 7 (a deletion of one of the chromosome 7 pair).  These are written +8 and -7 respectively, and I would expect one of these extra mutations is what the Onc means.  There could be other possible meanings.  So you need to ask and write it down.  Better yet, get copies of test reports.

[natesmama]

JUST THOUGHT I'D UPDATE YOU ALL ON NATE'S JOURNEY. I THINK HE HAS BEEN OFF GLEEVEC COMPLETELY FOR ABOUT 8 WEEKS OR SO. HIS PLATELETS HAVE REBOUNDED A BIT THEY ARE IN THE 30,000 RANGE AND HIS WBC ROSE SLOWLY BUT STEADILY AT FIRST BUT HAS NOW BEGUN TO GO UP BY 10,000 PER WEEK. I WAS IN MIAMI WITH HIM FOR A COUPLE OF WEEKS RECENTLY. HIS DR SENT HIM TO A TRANSPLANT TEAM AT SYLVESTER CANCER CENTER TO BEGIN, AGAIN THE FIRST STEPS FOR A BMT. THEY HAVE FOUND SOME GOOD PRELIMINARY MATCHES WHICH THEY ARE FOLLOWING UP ON. NATHAN IS UNCERTAIN NOW, IF HE WANTS TO GO THAT ROUTE. THE DR OVERSEEING HIS CASE AT SYLVESTOR AND HIS REGULAR ONC HAVE BEEN IN CLOSE TOUCH AND TODAY THEY DECIDED TO TRY HIM ON TASIGNA. I AM HOPING THIS WILL PROVE TO BE JUST WHAT HE NEEDS TO EVEN HIM OUT AND MAKE HIM BETTER.  

    JUST READ BACK THROUGH SOME OF MY POSTS AND REPLYS THAT WERE SENT TO ME. I APOLOGIZE FOR HOW I CAME ACROSS IN SOME OF MY MESSAGES, AND I SO DEEPLY APPRECIATE ALL OF THE CARING CONCERN AND INFORMATION YOU HAVE GIVEN ME. THANK YOU ALL FOR BEING HERE!!!

                                                                                                                                                                                 SINCERELY, PAT

[Trey]

What was the "third chromosome" issue you described earlier?

[GerryL]

Hi Pat,

In Nathan's case It doesn't hurt to be prepared for a BMT but hopefully Tasigna will prove to be Nathan's friend. My doc is keen on Tasigna and is swapping his patients (who have had side effect issues with Gleevec) over to it. Great that you got to spend some time with Nathan as well.

[natesmama]

HEY TREY,

  SORRY IT HAS TAKEN ME SO LONG TO GET THE ANSWER TO THIS QUESTION. NATHAN SAID THE CHROMOSOME IS CALLED TRANSIENT TRISOMY 8 ABNORMALITY. I GUESS THE LAST UPDATE I WROTE WAS THAT NATHAN WAS GOING ON TRISIGNA. HE IS ON A VERY MINIMAL DOSE. IT TOOK HIS WBC BACK TO NORMAL LEVELS IN ONE WEEK BUT ALSO DROPPED HIS PLATELET COUNT. HE HAD HIS FIRST CONSULT WITH THE TRANSPLANT TEAM SINCE THEY FOUND A MATCH. HE TOLD THEM HE HADN'T DECIDED IF HE EVEN WANTED A TRANSPLANT SO THEY ARE PUTTING IT ON HOLD FOR 6 MONTHS. THE DR TALKED ABOUT SOME TYPE OF PROTOCOL WITH THE MEDS THAT IS VERY EXACTING...NOT SURE WHAT, BUT BASICALLY HE TOLD NATHAN HE HAS 1-3 YRS TO LIVE WITHOUT A TRANSPLANT AND THE LONGER HE WAITS FOR A TRANSPLANT THE LESS LIKELY IT WILL WORK. PRETTY TOUGH NEWS. NOT SURE WHAT HE'S GONNA DO BUT I'M PRETTY CONCERNED.

                                                                                                                                                                                          PAT