You are here

Amazing PCR result

Categories:

Hi everyone,

I just got a lab test back that knocked my socks off, in a good way. After my 15-mo. was suboptimal, I called Dr. Druker at OHSU. His office sent me a kit to send a blood sample to a lab near there in Portland, OR, USA. Just got the results back: 0.0065!! Look at my history before this:

April 2017  date of dx 49.0364%

July 2017  3 mos. 5.6606%

September 2017  6 mos. 0.498%

December 2017  9 mos.  0.368%

March 2018 12 mos.  0.207%

June 2018 15 mos.  0.266%

So this is a dramatic improvement! Do you think the other lab (located in New Jersey, USA) is not as good? Should I assume the best, that a lab that Dr. Druker uses is better than my usual one? Could my result improve that fast? What should I do now, what to believe? I called my regular oncologist and left a message, hoping I can sort this with him.

I wanted a second opinion because my results were disappointing. Now I'm thinking I'm in line to be a candidate for TFR down the road!! What a great feeling!!

Thanks and best wishes to all.

 

That's wonderful news for you!

In my experience, PCR results are very "jagged", rather than a smooth decline. So just when you think you have hit a plateau ... boom! A lower result. It's never smooth. 

Congratulations. 

David.  

Fantastic news Justine ! What a way to start the weekend. So pleased to hear such great news . Louise 

Hi Justine ,what fabulous news and such a relief  .I was delighted when I got my first zero before the decimal point but to have so many after is amazing .TFR here you come hopefully  ,wishing you the very best of luck,much love ,Denise.

Thanks David!

Thank you Louise!

Thank you Denise! I woke up this morning thinking that the one thing that has changed dramatically in the last month is the sunshine ... it rained all of June here, but July has been perfectly sunny every day and I have been soaking it up. I wonder if all the sun has raised my Vitamin D level enough to fight the bad cells very effectively. Just a thought. I do take 5,000 units Vitamin D daily but wonder if the sun is the best source. Have you ever noticed anything like this? Anyway, thanks!

Hi, well we have had an amazing few months of sunshine here ,very unusual for this country .Would be great if that’s the case.My doc told me to keep out of the sun tho so I have mostly ,I was an absolute sun worshipper loved having a tan but scared to now.I have just started taking vitamin D only 2000 tho so will see if my next test is any better than the last.Wont be as good as yours tho but any decrease is better than nothing ,here’s hoping .Denise.

Awesome!

You go girl - so happy for you!!!

So happy for you!!

Justine, I celebrate with you!  We're practically PCR twins.  Mine just came in at 0.007% IS!

Kirk

 

Here's my CML history:

09/2012 p210 transcript 118.7% IS @ Dx, t(9;22) translocation in all 20 of the metaphases examined, FISH - 93%, begin Gleevec 400mg/day

12/2012 003.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome, FISH - 5.5%

2013 000.914%, 000.434%, 000.412% 10/2013 000.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormality

2014 000.174%, 000.088%, 000.064%

2015 000.049%, decrease to Gleevec 200mg/day, 000.035%, 000.061%, 000.028%

2016 000.041%, 000.039%, 000.025%

2017 000.029%, 000.039%, switched to generic imatinib 200mg/day, 000.070%, 000.088%

2018 000.233%, switched to dasatinib 100mg/day - I want zero #4 back! 100 and 50 mg/day Dasatinib did not agree with me so I went back to imatinib 300mg/day. 000.013% The dasatinib did seem to be effective. It was probably just too high of a dose.  Lowered dose of dasatinib, hopefully that will be effective. 000.007% Dasatinib at 25 mg/day seems to working!

 

Fantastic news Kirk! What are you taking these days? 

Thanks much! I've been quartering 100mg Sprycel tablets since my last PCR, three months ago.  At my appointment today, my onc wrote me a script for (2x20) 40 mg/day Sprycel.  I think maybe I'll try 20 mg/day and see how that goes.

20 mg per day will likely be a very good stable dose for you.

At M.D. Anderson, starting Sprycel dose is now set at 50 mg (not 100 mg). The lower dose works better because it impacts the immune system less (the part that fights cancer naturally).

Unfortunately every Sprycel taking patient has their own unique threshold which needs to be discovered. Some people need more drug some less. But people who need less and take more end up having a worse response. There is a strong correlation between Sprycel's myelosuppression effect and drug response. High myelosuppression requires low dose for best response.

Congratulations Justine. What joy! I sincerely do hope you get to try TFR.

Can I ask... did both labs report in the IS scale?

If I lived in the US I'd be very tempted to get myself to Dr Druker for an opinion. I've been plateauing a long time now (see below) and I absolutely love the idea of getting a deeper response by switching labs :-)

 

CML diagnosed April 2016
Initial WBC 90 000 Blasts 2%

Type One Diabetes diagnosed April 1980 (age 12)

BCR-ABL (IS)
46.77  April 2016
3.568  July 2016 
0.076  Oct 2016
0.016  Feb 2017
0.0079  April 2017
0.014  July 2017
0.019  Sept 2017
0.011  Nov 2017
0.019  Jan 2018
0.0093 Apr 2018
0.022 July 2018

Sprycel
100mg First 5 months (29 April 2016 - 22 September 2016)
75mg  Sixth month (23 September 2016 - 28 October 2016)
50mg After six months of Sprycel (October 29 2016 to present)

 

Well, it turns out my understanding of the result (through a phone conversation) was wrong. I saw the actual lab report today and it's 0.65 (IS), which makes more sense. I am asking for an appointment to see Dr. Druker. 

Isla, your plateau is at a great level! And you had such a quick response. 

I am sorry that you have to deal with diabetes as well as CML. You are strong and doing great!

 

Oh Justine. Hang in there! This must have been a complete emotional rollercoaster for you!

Very sorry about the mix up but absolutely thrilled for you that you are going to see Dr Druker. He seems so appealing and positive and knowledgeable and seems to really care about his patients. I have a feeling you will feel a lot better after speaking with him.

What TKI are you on by the way?

Justine - I was afraid of this, after I saw your first post, but decided I was not going to be the one to burst your balloon.  What I thought at the time was wrong, anyway, as what I feared was that the sample had gone bad, or at any rate wasn't as valid for being mailed in.  I'm really sorry you had to go through the rollercoaster effect - one of the side effects we have in the CML world. 

I really get enraged about the unnecessary impact on patients' emotional state so many of these interactions have.  There should be a standard protocol for reporting and INTERPRETING PCRs that would include:  When/how blood is drawn, handled and processed, a requirement of MINIMAL time to report to the doctor AND patient, a full and visual copy of the report, and an immediate interpretation with one-on-one interaction with the patient and the doctor (by phone, email, something timely).  These "patient rights" are minimal, reasonable, and already in place most everywhere because they are so obvious.  And yet, so many of us don't get treated this way.  In my case, I don't get my PCR result at all.  Johns Hopkins' system "can't" send me a copy in any format.  They claim the lab is on one system and it can't talk to the MyChart system.  They will not send it snail mail - I have to go through a long and tedious thing with the Medical Records department to get that.  Also my own onc "can't" see my results except on his own screen.  He claims he "can't" forward it or make a copy to send me.  I've gotten used to this, as I have had to.  He tells me the result (just the number, nothing about "in one replicant" or whether they've changed their reporting range, etc) in an email, but of course, it's long after our office visit, sometimes as long as 10 days.  I have to trust he read it right, and if there's a comment he makes, I have to read between the lines and decide whether or not to take up his precious time with a question.  Then we might have the ridiculous email dance, where tone is misconstrued, etc.  Unnecessary stress for the patient, who is already on tenterhooks for a week or two before the appointment anyway, and this at least 4 times a year for the rest of our lives.  At some point, you just have to detach, or go nuts.  You can see what a great job I've done on the detachment thingwink 

Anyway, back to YOU.  I am sorry for your disappointment.  Good for you to pursue an appointment with Dr. Druker.  He will set everything straight and get you on the right path.  I have no doubt on this!

Thanks for the encouragement. 400 mg imatinib since April 2017.

Kat, yes, it does seem very unnerving sometimes. Like you, I try hard to do the detachment thing. Good luck on that to us all!

I think your response is not unusual at all on Gleevec. You are in good hands with Dr Druker. Looking forward to hearing what he recommends.

Good luck :)

Hang in there Justine.  You might very well have to graduate to Tasigna or Sprycell, so you still have a lot of bullets in the chamber - Dr. Drucker will take you in the right direction.

Kat73 - Mayo Clinic does it right on PCR test. I have blood drawn about 8:30 AM and he result is on my patient portal by mid afternoon same day.  I get access at the same time as my oncologist. 

Kat73, not good about the professional patient communication as you describe the Johns Hopkins system.  I am at Mayo and get results on the on line patient portal as soon as my Onc does. They also have in portal e mail, for patient communication with health care providers, so I can correspond immediately, directly, with my Onc, and he can, and does get back very fast.

Every visit is documented and I can refer back to it and print it. It removes all the unnecessary stress you are describing. So sorry. We do not need additional stress.   My weekly blood work is done at my Mpls clinic and appears promptly on a communication app called MyChart. Sometimes large medical systems are not nimble.  Have you ever spoken with Patient Relations at Hopkins, or with the powers that be where your Onc is?  It might be worth it if you have the energy.  My family culture taught me to analyze and speak up. Sometimes it works. Sometimes not. The bureaocratic system you are dealing with has to be receptive for it to work.

Hope things get easier   Gitel

 

 

 

Yes, Gitel, I have indeed spoken up!  I went up the chain of command to the top of IT.  They assured me that everyone in the higher administration was aware of the problem and trying to fix it.  This was three years ago.  I emailed a few times the first year, and again the next year.  Nothing has been done.  I have had to move on. 

I didn't mean to give any impression that my onc doesn't get right back to me via email on questions in general.  And I have prompt access to (and can copy) all my other labs.  It's only the PCR that can't be viewed.  And the reason this matters to me is that there is a lot of extraneous information in the report and as I continue to get educated more of this is of interest to me, plus the lab is constantly changing the language, the testing parameters, etc.  I'd just like to know, that's all; would just like to see it in its entirety and have a hard copy for my files. Oh well.

It would also be great if I could have it before the office visit, but that's impossible because I live an hour of nasty, fast interstate and urban rush hour traffic away, so two trips is too much.  It only makes sense to stay consistent with the lab doing these, and Hopkins prefers their own, natch. 

Of course it makes more sense to have the BCR ABL available when one sees the Onc at the three month visits. That’s how I learned I was Imatinib resistant and needed To be  checked for mutations etc. . Major changes in treatment direction and many questions are covered in these appointments.  I am 80 miles away from Mayo Clinic, a lovely drive over midwestern prairie and farmland, but a long tiring drive. Scary in winter.

 My weekly blood for CBC is drawn and tested at my local medical group, faxed or e mailed to Mayo. The BCR ABL is drawn there but sent to a lab in Salt Lake City. I make sure to have that blood drawn a week before the Onc appointment. On this blog I learned about blood degrading-so I have it drawn on a Monday or Tuesday morning as the blood which is sent to Utah is picked up in early afternoon and sent by air.  I get the results thru MyChart as does the Onc about 7 days later. It is A long report with numbers at the end. Onc also has blood work done before my Mayo appointment and they repeat the BCR ABL.  As with your Onc, he trusts his own medical lab.  Those results come in on the Mayo patient portal about 4-5 days after the appointment. The results , have been within 4 points of one another.  This seems pretty expensive, but that is the way Mayo has set it up. The appointment without the BCR ABL wastes time.  

 Sad that I have a wealth of information and you are wanting. We are both at major medical facilities in the US.  I understand your frustration. Gitel

 

Appointment with Dr. Druker scheduled for early November. The scheduler said he sets aside two hours for a new patient visit. Two hours, imagine! Will let you know how it goes. As I've indicated before, I am very happy with my local oncologist, but look forward to seeing a CML specialist and asking many questions.

Can't wait to hear what he says, Justine!  November will be here before you know it.  Do give us a full report.