My CML Log

       
June 2002                                          June 2010
Laura Dedering

2003 Info    2004 Info    2005/2006 Info   2007/2008 Info    2009-Current
FMI: http://www.nationalcmlsociety.org/

2004
Jan. 2
- Bad news.  Now ALL my blood levels are too low - the white blood cells, the red blood cells and the platelets - so they stopped the Gleevec.  I received a shot of Neupogen to try to boost my immune system and I have to give myself injections Saturday and Sunday.  Back to the Oncologist on Monday for follow-up blood work.  Also Monday I have to go to my GP for a biopsy on a skin lesion.  Wednesday I go up to Hackensack and see Dr. G. again.  They still haven't figured out if Tommy is a possible Bone Marrow Donor yet.

Two of the dogs have been driven to Florida where they will stay with a friend until April. Another is up in Oak Ridge, NJ with more friends.

Jan. 5 - Better news.  My white count (WBC) went up to just slightly above normal.  My red count (RBC) edged up slightly.  Unfortunately, my platelets (clotting factor) continued to go down and is currently at 34.  We didn't do the skin biopsy because 1st - it looked better and 2nd - it was too risky to do it with my low platelets and fluctuating WBC.  Still told not to take the Gleevec.  We will be redoing blood work on Friday.

This Wednesday we go see Dr. G. at Hackensack. Hopefully he will be able to tell us if Tommy is a possible donor.

Jan. 7 - Went to see Dr. G. at Hackensack.  My WBC is now down below normal again. The RBC and Platelets both edged up.  He confirmed these are all normal results to taking the Gleevec.  It will take a good month or so to get all the blood regulated.

Dr. G. explained that the Philadelphia Chromosomes (Ph+) are stem cells.  A good analogy is to think of my blood as a field full of weeds with only a few healthy plants.  You apply weed killer (Gleevec) which kills the weeds (Ph+) but leaves a barren field with only a few plants (healthy blood).  So, you temporarily hold back on the weed killer.  Some additional healthy plants start to grow, but some of the weeds come back, too.  After a break, you apply more weed killer and the process repeats.  Only now you end up with more healthy plants and less weeds.  And on and on it goes.  The end result is that you end up with mostly or all healthy plants and either a few or no weeds.

Hopefully, I will make enough healthy blood to be able to restart the Gleevec soon to start killing more of the Ph+!

Dr. G. looked at the HLA test results for me and my brother Tommy.  He said they need to have results for categories A, B, C & D for each of us in order to compare.  Unfortunately, they only have A & B for me and only C & D for Tommy.  Hackensack will contact the laboratory to get the other pieces to the puzzle and will let us know about whether or not he is a possible donor.

I return to Overlook on Friday, Jan. 9th for, that's right, another blood test.  My poor fingertips are looking like pin cushions!

Jan 9 - All the blood counts went up ever so slightly, so no weed killer (Gleevec) again this week. Next visit is Thursday Jan.15.

Jan 13 - Ran in for an updated blood count since I developed several bruises yesterday.  Dr. L said he was pleased with my counts and wants me to start taking the Gleevec again.  So, now we start round two killing off the Philadelphia Chromosomes!

Jan 21 - Saw Dr. S. at Overlook Oncology today.  He examined the rashes and multiple bruises I have been getting.  They appear to be side effects of the Gleevec. He is questioning whether it might be related to taking Gleevec and Prozac, which is on the pharmacy reaction list. He wants me to contact my GP and look into possible alternate anti-depressants I can try if the problem continues. The WBC and RBC counts were up just a little, but the platelets shot up to above normal level.  I am to stay on the Gleevec and return in another week.

They finally got both pieces of Tommy's blood work for donor compatibility.  Unfortunately, the second half of mine was never run, so it needs to be repeated.  All together I gave up 10 vials of blood today to repeat that test and to run additional tests to further investigate the bruising problem. :-)


Jan 29 - GREAT NEWS!  My WBCs are normal, my Platelets are normal and my RBCs are just below normal!  I have not had any more rashes or bruises.  I get to stay on the Gleevec and don't have to go back for a recheck for 3 WEEKS!

They finally got both pieces of my blood work for donor compatibility.  Unfortunately, now they discovered that one of the pieces in the second half of Tommy's was inconclusive, so it needs to be repeated.  HERE WE GO AGAIN!  Tommy goes in tomorrow morning to have his blood drawn again and all the tests need to be redone.  JUST UNBELIEVABLE!  It's a good thing I am not in dire need of a bone marrow transplant.

Next check-up is on Thursday February 19th.

Feb 13 - Having a bad 2 weeks.  I've had a killer headache since Jan. 30 and now a stomach bug.  I can't wait to see the doctor next Thursday. :-(

Feb. 16 - Added a cold to the list.  :-{

Feb 19 - All of my blood levels came back WITHIN NORMAL RANGE - YEAH!!!!
Tommy's blood work is back and we are waiting for them to analyze the results.
I go back next week to run another FISH (FLUORESCENCE IN-SITU HYBRIDIZATION, METAPHASE CHROMOSOMES) peripheral blood test to count how many Philadelphia Chromosomes I still have.  That percentage will show if I am in remission.  Please keep saying those prayers since they seem to be working.
Plus, I really, really want that RUBY RING that Tom promised me if I am in remission by March!!

March 4 - Bad News, Tommy's compatibility test shows that he is NOT a potential bone marrow donor and he is my only sibling. That means if the Gleevec doesn't work or stops working, I will have to rely on the generosity of the general population to try and get a donor.

I am SOOOOOOO FRUSTRATED. 
The FISH test results aren't back yet to see if I am in any level of remission. :-{

March 10 - FINALLY the FISH test results are back.
27.5% of the 200 interphase nuclei were still positive for the Philadelphia Chromosome.  That is a good reduction in only 72 days since I started the Gleevec.  Plus, I was temporarily off the Gleevec for 11 days.  To put it in perspective, on Dec. 4, there were 100% of the 200 Cells positive for the Philadelphia Chromosome.  Now they have been reduced by 73%.

That means so far, in the three months since my diagnosis -
- I have reached hematologic remission (WBC, RBC, Platelets normal),
- Am working toward cytogenetic remission (currently down to 27.5%, goal is 0%),
- And after that, we will hope for molecular remission.
Next blood test is on the afternoon of March 18th.

March 18 - Great check up.  All my Whites, Reds and Platelets are still within normal range.  I don't have to go back for 6 weeks!!

Also, last week I received a copy of a letter from Dr. G at Hackensack Univ. Cancer Center written to Dr. S. at Overlook.  In part, the letter says "... patients who were below 35 percent at 6 months had a much higher chance of remaining in remission long term...".  I exceeded that number with a test result of 27.5% at just over 2 months!

Tonight Dr. S. is attending a meeting on CML being presented by a specialist from M.D. Anderson Cancer Center in TX.  They are supposed to be one of the very best concerning research and treatment of CML.  Hopefully, he will have some exciting new developments to report.

Tom says we need to go pick out that ring.  I wish we would stop getting snow so that we could go to the jewelry store soon. Next blood test is April 29th.

Thanks for going though all of this with me. Your love and support mean a great deal. 

March 24 - Well friends, here it is!!    Not only a beautiful Pigeon Blood Ruby, but it is surrounded by 12 round full cut and 12 tapered baguette diamonds!!  The picture really doesn't do it justice.

I know you all wanted to see me wearing it at Potomac, but the setting is high and it will catch on my bait pocket while I'm showing. Plus, there's no way I'm leaving this hard earned prize in my hotel room unattended! Therefore, I have posted a picture instead.

I'll see many of you in Frederick on the 6th - 10th.

April 11 - OK, so I ended up taking the ring to Potomac.  Too many people wanted to see it.  A friend had the perfect solution - while showing the dogs, I wore the ring on a heavy necklace.  Problem solved.  It was soooooo good to see everyone!

April 29 - Another great check up.  All my Whites, Reds and Platelets are still within normal range.  I don't have to go back for 8 weeks!!  Isn't that terrific?  When I do go back, it will be the 6 month mark and they are planning on running a very sophisticated molecular test to see what is happening with the Philadelphia Chromosomes.

My weight is coming back on, which is a mixed blessing.  The biggest problem is that I am just so fatigued and depressed.  I know I should be happy and grateful, however, I was being treated for depression long before becoming affected with Leukemia and I am now on only half of my regular anti-depressant dosage.  Prozac is one of the many drugs that are not supposed to be taken with Gleevec.  I have also had a recurrence of my Acid Reflux Disease, but the good news is that Nexium is not on the Gleevec forbidden list.  So, overall, things are going well.  Hopefully there won't be anything new to report until after my next visit on June 22.

May 9 - Had a bit of a scare yesterday and today.  I am having trouble with my left eye.  It looks like a big windshield wiper is going back and forth across my line of vision.  I am also seeing flashes of light in a curve along the left side.  Called the ophthalmologist and he said to meet him in his office in half an hour.  Saw Dr. B and he said I dodged a bullet, I just have floaters, no retinal detachment. I do need to go back in 3 weeks.  It seems that one piece is still attached to the edge of my retina.  When it tries to float it tugs making the light flashes.  If the retina detaches he can do a laser procedure right in his office to reattach it.  Oh Boy, the fun just never stops.

May 26 - Back to the eye doctor.  No change.  I'll just have to learn to ignore what looks like a windshield wiper constantly going back and forth in my left eye.  Getting older certainly isn't for sissies!
Next Oncologist visit is scheduled for June 22.

June 22 - Everything went well at Dr. S's.  Red counts were just a little low.  I've been eating more seafood and poultry lately.  Poor me, back to eating steak!  They took the blood for the FSH and PCR studies.  Won't get those results for a couple of weeks.  I don't have to go back to the oncologist now for 3 months - YEAH!

July 18 - Still waiting for the Chromosome test results. Very frustrating.

July 21 - Left a message at Overlook Oncology inquiring as to my FISH test results.  This is ridiculous.  It has been 4 weeks.

July 22 -  Received a fax this morning of the FISH Lab report with no comments or explanations from the doctor.  The date the lab faxed it to my Doctor's office was JUNE 28TH!!!!!  They apparently have had the report for 3 1/2 weeks!!  Called their office asking for an explanation of what the results said. I  was told Dr.S would not be back until Monday.  I asked for the report to be shown to Dr. L who was in, to confirm what I thought the report was saying.  The nurse called back and said that the doctor was busy with appointments and I should make an appointment to see the doctor for him to explain the results.  I tried again to tell her I didn't need to see the doctor, I just needed her to stick the report under Dr. L's nose to confirm it really said what I thought it was saying. Needless to say, no one called back.

So here is what the report says:
Number of cells counted: 200
Results:    0% of Positive Nuclei with Fusion
                100% of Nuclei without Fusion
Interpretation: BCR/ABL rearrangement is not detected.

Comment: Given the prior history of CML, the BCR/ABL level may be below the resolution of this methodology.

OUR BEST INTERPRETATION IS THAT THE REPORT SHOWED I HAD NO PHILADELPHIA CHROMOSOMES (Ph+) IN THE BLOOD SAMPLE THEY TOOK.  WE GUESS THAT MEANS I AM IN REMISSION.

There is another more sophisticated test that they will probably run that will detect ANY Ph+ chromosomes, but for now, we are delighted.

The goals were to have less than 35% Ph+ at 6 months on Gleevec.
I was at 27.5% at 3 months and 0% at 6 months.  Way ahead of schedule.  Thank you all for you prayers and good wishes.  They appear to be working.

 

Sept. 21 - Went to the oncologist today for a follow up.  Finger prick blood test showed WBC and Platelets normal - RBC's were 0.1 below normal range.  Pretty good!  They drew 3 vials of blood to run new FSH and Flow Cytometry tests.  Those results will show if I am still in remission. That's all the good news.

Now, here's the bad news. My side effects to the Gleevec are becoming more severe.  I am vomiting now almost daily, and then sometimes as many as three separate long episodes a day.  The spasms are so strong that the blood vessels on my face burst and I end up very sore and exhausted.  I'm also having severe muscle cramping as well.  Sometimes it feels like someone has grabbed the muscles along my ribcage and just torn them off.  It only lasts a couple of minutes, but it is extremely painful.

I had to stop taking the Prozac because it interacts with the Gleevec. I started to suffer from severe short term memory loss. I tried going without any antidepressants, but I just couldn't handle it.  Next we tried Wellbutrin 3x a day but it was not working.  I am waiting for a new script for Wellbutrin XL which you take only once a day.  Unfortunately, the pharmacy needed more info from my doctor, so they mailed the script back to them!  That was after they sent me an email saying my order had been processed.  So, after not receiving the meds for two weeks, I called to find out where they were and that's how I found out.  Nice of them to inform me. So, I am completely without any antidepressants right now - and am unfit to be around, so I have been told :o)

Tomorrow I go to the Gastroenterologist. He is going to arrange to have me scoped from every direction - can't wait for that day!  At least I will be under anesthesia. Hopefully he will be able to come up with some medications to stop all of the vomiting.

So, there you have it.  The latest in my struggle with Leukemia.

Sept. 22 - Went to the gastroenterologist. He scheduled me for an abdominal ultrasound on 9/27 and then an Endoscopy/Colonoscopy &  Esophageal Dilation on Oct. 9.   Next follow up is on October 18th with the gastroenterologist.  The fun never ends!

Oct. 9 - Had the Endoscopy, Dilation and Colonoscopy.  He said everything looks good.  He did a couple of biopsies but doesn't anticipate a problem.  Glad that's over.  Follow up visit with him on Oct. 18th.

Oct. 18 - Went for a follow up with the Gastro guy.  The biopsies were negative.  I have 4 separate issues going on, but none of them life threatening.

I've been taking the new antidepressant, Wellbutrin XL.  It's not working anywhere as well as the Prozac did but it is better than nothing.

Finally received copies of my FSH and Flow Cytometry tests after 3 weeks and three phone calls to get them faxed to me.  Good news - still in remission. There were no Philly Chromosomes in the 200 cell count and no other abnormal cells.

My next appointment will be in December, my 1 year anniversary,  of sorts.  That will be in the Hackensack Cancer Center where, I believe, they will be running more comprehensive tests.   I think one of them is called a PCR study.

So, hopefully I can get through the next two months without any doctors appointments!  Wouldn't that be nice.

Nov. 3 - Can't take the side effects of the Wellbutrin XL anymore. I can't sleep, feel agitated and my heart has started doing the "wonky dance" again.  Spoke to my GP and she said to stop the medication, come in to see her and we will try another one.

Nov. 10 - Saw my GP.  We will give Effexor a try.  Will go back to see her on Nov. 24 for a follow up and dosage adjustment.

Nov. 24- The Effexor seems to be working pretty well so Dr. K. has given my a script for the XL once a day version.   Hopefully that will work as well.  The reason for switching is that the other pills were taken 3 times a day and had to be taken with food.  Since I don't seem to eat on any regular schedule, it made the effects of the meds erratic since the doses weren't taken at specific intervals.  The XL will be time released.  The nurse tried to pull blood from me in three different locations but it was a no-go.  Just a lot of bruising.  She wrote a script for me to take to Hackensack to run the tests when they pull the blood there.

I have scheduled an appointment on the afternoon of Dec. 6 at The Cancer Center of Hackensack Univ. for my 1 year follow up. This is the biggie.  They will hopefully be running more sophisticated blood tests.  They promise they will not be doing another bone marrow biopsy - that is one fact you can count on!

Dec 6 - Saw Dr. G. up at Hackensack.  They drew blood for a PCR study among a few other tests.  We should have the results in 7 - 10 days.  Unlike the FSH test that does a 200 cell count, the PCR study will do a 10,000 cell count.  Those results will say whether I am in metabolic remission or not.  So, we wait and hope.

We discussed several issues.  From this point forward my local oncologist will need to run a PCR study and a liver function test every three months. One of the biggest side effects of Gleevec is liver damage. Also, the rash or rosacea on my face, the muscle cramping and the blurred vision are also side effects.  The muscle cramps can be controlled by taking Calcium every day.

Some of the general information was good news and some was not.  Novartis has come up with a drug that can be taken along with the Gleevec that boosts its effectiveness.  Bristol Myers Squibb has a new drug that can replace Gleevec if the patient becomes resistant to it.

The bad news is that they tried taking patients who were in remission off the Gleevec, but in every case the CML came right back.  So, Gleevec is strictly a control drug, not a cure.  A BIG disappointment.

Dec. 7 - The Effexor XL came so I have taken my first dose today.  Hopefully this one will work!

Dec. 23 - I'm STILL waiting for the results.  I called Monday since it was two weeks since they pulled the blood.  The nurse called back on Tuesday and left a message that the Dr. G. mailed me a letter with the results.  She did say that they were excellent, so at least that is some good news.  The letter is still not here.  I'll post when it the letter arrives.

Dec. 31 - FINALLY I received my PCR study results. Out of the 10,000 cells counted, the results were a quantitative ratio of 0.0002.   Data presented by MD Anderson on patients (treated with Interferon since Gleevec is too new) who are long time survivors shows that many of these were the patients who obtained a value of less than 0.05. 
Per the letter from Dr. G. at The Cancer Center at Hackensack UMC,
"Our current patient achieved a better response than this.  This is extremely encouraging."

So, I guess I have a good chance of being around quite a while!