28 replies to this topic

[Sneezy12]

http://medicalxpress...properties.html Frank

[scuba]

Frank -

No surprise that trials like this are starting. Curcumin has already been documented to help augment Sprycel in Colon cancer.

And as many of you know, I am my own "trial" taking Curcumin with Sprycel for about a year now. I went from 50% PCR to .012% (MMR) and only on 20mg. Sprycel. Is it the low dose Sprycel alone doing this? Don't know.

I leave for M.D. Anderson in a few minutes to have my '3 month' PCR blood draw. In about 7-10 days I will know what level my PCR has changed. I am hoping for another log drop or even CMR.

Hyperbole aside - I suspect there is something to Curcumin helping "weaken" or outright reduce CML cells in order for Sprycel (and probably the other TKI's) to be more effective. It's just hyperbole though ... just hyperbole.

[pammartin]

Scuba,

Although it is difficult for me to wrap my brain around the total concept, I follow your journey with earnest abandon.  I am sitting on the edge of the couch waiting on your results also, may they be undetectable and you become boring to M.D. Anderson also. 

Best of luck!

Pam

[scuba]

Thanks Pam -

I am back from M.D. Anderson. Blood is taken, so the countdown begins.

It would be nice if they do not find any detectable evidence of CML.

One additional comment - I did meet with Dr. Cortes' assistant (she came and found me, so that was a surprise) and they are aware that I want to stop Sprycel if I become PCR-undetected. She told me they now have many patients that are off medication and being monitored. She said many relapse, but that many don't as well and those are the ones they are very interested in. They will add me to the "trial" when I am ready. Again - assuming I can get to PCRu. I should know in a few days.

[pammartin]

And now we wait.....

[PhilB]

Hi Scuba,

Out of curiosity, if you do hit PCRU, maintain it for 2 years and try stopping Sprycel, would you plan to stop curcumin as well in the hope that you were now 'cured', or to go curcumin only in the hope it could control the CML alone?  Just curious to know which particular brach of the hyperbole river you are paddling along.

[valiantchong]

Scub,

Just curious on what the nurse had said, many has relapsed but that many don't has well...Does it means 50%-50% chances ? Does it apply to patients with Gleevec or Sprycel or Tagsina ?

I hope u will have a PCRU result.... Wish u well...

[scuba]

Hi PhilB - I plan on stopping Sprycel after six months assuming I can get to PCRU. I will stay on Curcumin in the hope that it alone can keep me there. I do not anticipate "cure" unless and until they can get at the Leukemic Stem Cell.

Curcumin is a natural root with many dietary benefits. So I will continue to take Curcumin.

Look forward to meeting you when I am next in London perhaps ...

Michael

[scuba]

Valientchong - It was not specific in terms of percentages, just that they have observed many to do well off the TKI (continue PCRU) and many relapse and have to re-start their TKI. She said those that stopped, often had to for side affect issues even though they were PCRU. We did not discuss one TKI over another - just in general. I asked if they had stopped for two years or more before trying and she didn't know.

[LivingWellWithCML]

I am definitely very interested in this.  Good luck Michael ... I am banking on a PCRu result for you!

[scuba]

Thanks Dan,

I just received my CBC results from this morning:

Overall my Neutrophils are almost normal, white blood is close to the normal range.

Red blood is still somewhat low but steady from last time as are the platelets.

Based on these results - I suspect I am not at PCRU (pure conjecture) - I still do not have "normal" blood counts.

Sprycel does cause cytopenia (low counts).

My metabolic numbers came back normal for the most part except for Glucose at 107 - for me it is usually 70. I have to get out and exercise more.

Now we wait to see what the PCR comes back as ...

Accession: 12-129-02752 05/08/2012 08:15

_____________________________________________

COMPLETE BLOOD CNT/DIF/PLT

¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯

WHITE BLOOD CELL COUNT 3.8 L  K/UL (4.0-    11.0) [3 months ago = 3.1]

RED BLOOD CELL COUNT 3.54 L  M/UL (4.50-    6.00)

HEMOGLOBIN 12.9 L G/DL (14.0-    18.0)

HEMATOCRIT 37.4 L  % (40.0-    54.0)

MEAN CORPUSCULAR VOLUME 106 H  FL (82-      98)

MEAN CORPUSCULAR HGB 36.4 H  PG (27.0-    31.0)

MEAN CORPUSCULAR HGB CONCENTRN 34.5 G/DL (31.0-    36.0)

RED CELL DISTRIBUTION WIDTH 15.8 H % (12.0-    15.5)

RDW STANDARD DEVIATION 60.9 H  fL (35.1-    46.3)

PLATELET COUNT 114 L K/UL (140-     440) [3 months ago = 121]

MEAN PLATELET VOLUME 11.3 H  FL (4.0-    10.4)

DIFFERENTIAL-METHOD AUTO DIF                 

NEUTROPHIL PERCENT 42.4    % (42.0-    66.0)

A Neutrophil count includes Bands.

LYMPHOCYTE PERCENT 40.8    % (24.0-    44.0)

MONOCYTE PERCENT 13.4 H % (2.0-     7.0)

EOSINOPHIL PERCENT 1.8    % (1.0-     4.0)

BASOPHIL PERCENT 0.8    % (0.0-     1.0)

IMMATURE GRANULOCYTES PERCENT 0.8 H % (0.0-     0.4)

The IGRE% includes Metamyelocytes, Myelocytes and Promyelocytes.

NEUTROPHIL ABSOLUTE COUNT 1.61 L  K/UL (1.70-    7.30) [3 months ago = 1.31] This is a nice change, I am almost to the normal range.

LYMPHOCYTE ABSOLUTE COUNT 1.55 K/UL (1.00-    4.80)

MONOCYTE ABSOLUTE COUNT 0.51    K/UL (0.08-    0.70)

EOSINOPHIL ABSOLUTE COUNT 0.07    K/UL (0.04-    0.40)

BASOPHIL ABSOLUTE COUNT 0.03    K/UL (0.00-    0.10)

IMM GRANULOCYTE ABSOLUTE COUNT 0.03 K/UL (0.00-    0.04)

  ¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯

[Susan61]

Hi Scuba:  We are all anxiously awaiting your results, and hoping that all goes the way you want it to.  My numbers are running in the same range as yours, with the exception of my Platelets being down to 96 for the first time. I was holdng at 127 for the longest time.  My doctor is waiting for the next blood test in about 8 weeks, and I have a very strong feeling  I will be reduced to 200mg of Gleevec or a Gleevec vacation.  I know what you tell me all the time, but I am a lot older than you are also.  I am just afraid that if I ever stopped my TKI that I might lose my PCRU, and not be able to recover it.  Your young, and you want to plan a full life cancer free, and I totally understand as well as pray that you can do it.

I think I am more concerned with my eGFR on the kidneys, and I went back to my old blood tests as far as 2008. I have been down in the 40 range before,  right now I am at 43.  Not sure if there is a connection to the fact that all my other numbers were low too.

I might start considering the Curcumin??  I forgot how you take it, and how much of it.  Right now I am going to see how the next blood test goes.  I know Trey cut back to 200mg, and still holding his PCRU.  Lots to consider.

[scuba]

Hi Susan,

You have been PCRU for such a long time (and importantly - following Interferon first) that there is little chance that CML has survived at the stem cell level. But as you know, even if it did, those who lost PCRU quickly regained it when they resumed taking their drug - you would too.

Since Trey has reduced to 200mg Gleevec and is still PCRU, he is a good model for you to follow and take the next step and reduce dose. You will likely benefit with less side affects and perhaps get your counts back up (especially platelets).

Or, you could take a Gleevec break and monitor your PCR levels more closely with the aid of your Oncologist for a few months and see if you hold it (one month at a time). As I mentioned in an earlier post, I would wager money that you would keep your PCRU status PCR test after PCR test. One of the main reasons why I want to stop taking Sprycel is so I can get my blood counts to be normal again (i.e. more red blood).

I take Curcumin as a pill - two in the morning along with an Omega-3 oil (helps dissolve the Curcumin) capsule and then two pills around 5:00 p.m. or so. Each caplet is 1,000 mg. Curcumin. I would continue taking Curcumin even if I no longer had CML. Curcumin was a discovery during this adventure and I am glad I found out about it. I had the beginnings of arthritis and now it is gone - no joint pain in my hand like I was developing. My 90 year old Mother has Arthritis and I am trying to get her to try Curcumin for her joint pain.

[Trey]

Stopping TKI drugs 6 months after PCRU is a capricious goal.  What's the hurry?  CML treatment is a long distance race, not a sprint.  Steady wins the race. 

I think Loreta shows the benefits of personalized dosage, and Michael (Scuba) as well.  Not everyone needs the "normal" dosage. 

[momruns]

I agree , this is a long term battle and I am working with my ONC to have the lowest possible dosage without issues.  I like the idea that I can ask questions on this board before I see the doctor and have educated questions when I get there for us to plan.

Loreta

[Susan61]

Hi Scuba:  I am going real slow with all of this.   I see my Onclogist in July, and I want to see how my  numbers are with this next blood test before my appointment in July.  I just saw my Primary Doctor yesterday for some other things, and she feels that if I reduce my dosage of Gleevec to 200Mg. that I will see my numbers come back up along with probably feeling less of this fatigue etc.  She did not want to suggest anything, as she feels that is my Oncologist's department. I told her I am thinking the same thing.  I left there feeling pretty positive, as she told me I had a normal Mammogram, and that the Fish Oil I have been taking has worked to get my Triglycerides down. All the other tests she ran on me were normal also.

     I have a question for Trey also.  I would like to know if you reduced your dose just to see if you could maintain a PCRU on a lower dose, or were your counts dropping like mine.

    In the back of my mind, I constantly remember all the doctors that I saw saying that there is no cure.  That the Gleevec would just keep me stable, because it does not kill the root of the Leukemia.  Thats why I want to go slow, and look into all of this more.  I am willing to cut my dose for the first time, which I did not want to do before.  So I will know within the next few months what I am going to do.

   I do Thank Everyone for trying to get me through my issues all the time.  I value any advice that is given to me.

[scuba]

Susan - It's good that you are willing to consider modifications in order to improve your quality of life. By reducing your dose - you may very well reduce your side affects and even restore suppressed counts so you feel better.

I am concerned, however, with how much  you have associated PCRU with peace of mind. I would worry that should you lose PCRU, that it would affect you so much it could be a concern. I say this knowing that even if that did happen - you could resume Gleevec and restore your PCRU as many others have done.

Trey has reduced his dose to 200mg Gleevec and remains in PCRU. There is an excellent chance the same would be true for you. I have said before that there is also an excellent chance that you could reduce to zero and still remain PCRU, but you should be mentally prepared to try that. I sense, for you, that this route you have chosen is the correct one.

I am definitely more of a risk taker - in life, in business and in other areas. But I so much want to extract life from life. I simply do not fear CML. We all have to die someday - so I am going to live it as full and as free of  "side affects" as possible until something else gets me. It was this search for a solution that led me to 20mg. Sprycel, MMR and no side affects. I found a way to get back to normal. You can too. But try and not be afraid of the journey and think of it as an adventure. First 200mg. then zero. I am going to do the same thing. I am going to go to zero - by hook or crook. Sooner rather than later. And you are my inspiration.

We love you for being the leader for all of us. You showed that long term success with this disease is certainly possible. And for that, I salute you.

I would salute Trey, but then he would not be able to fit through the door. And I do want him to be able to get in and out.

Lots of love,

Michael

[pammartin]

Hi Susan,

Although I follow Scuba's journey with full dedication, I admit to many questions when I consider the future and stopping meds completely.  My saving grace would be as Scuba has noted several times, if you loose PCRU, patients have regained the undetectable status upon returning to the medication.  I have become less enchanted with PCRU because although it is undetectable at my lab, I realize if I travel to Dr Druker's lab I would not receive the same results.  Undetectable is a great word, but it is not one that has an intense calming effect for me, instead I appreciate the importance of my log reduction and I hope I maintain this status no matter where my labs are drawn.  Your journey has been long and sometimes difficult, and the doctors ingrained into your conscioiusness this disease will always be present, just held at bay by the TKI's.  Even today we still hear from many doctors these same words, not curable, response is key, meds work but do not destroy the deep rooted CML base, but I believe the times are changing.  Doctors are finally looking at the reduction of meds after a period of response is met even stopping them completely for some patients, hopefully they will move forward with the idea new patients do not have to be hit like a freight train with the TKI's and then left to slowly recover from the wreck, and brave risk takers like Scuba will reveal remission and cure are not unreachable goals.  Although I hated taking the 140 mg of Sprycel, I also was scared half out of my wits when I went down to 100 mg again, last fall 100 mg did nothing for my CML.  Here it is 4 months later and I have excellent response, but those first 6 weeks after the return to the 100 mg were horrible for me.   I again lived from lab to lab waiting for my platelets to skyrocket like they did in October and November.  Although I am fighting some side effects I believe are Sprycel related, and I have entertained the idea of pushing for a reduction, I am not mentally ready to take this chance.  We all share this CML journey, but each of our journeys are different because we are different.  What is a positive step for one may be a complete negative for another.  Preconditioning from doctors, posts from other CML-ers, family, friends, and reports all play a role in our decisions, but in the end we are the ones who choose what to do.  What I believe is an awesome positive in your case is you have a few months to consider your options, what is best for you, and time to adjust to the idea of the lowered dose.  You and I both know the transition will probably not be without anxiety and concern, but as you receive your continued reports of PCRU on the lowered dose you will begin to relax and enjoy the lessening of side effects and a better feeling about yourself.  Susan, you have traveled this journey longer than most of us here, and you have my utmost respect.  You support, advise, and share with every one of us, your story continues to give hope to new and established members of this board.  We are here for you as you have been for us, and as you travel we are listening, and will give back as you continue to give.

Pam

[Susan61]

Hi Michael: Lots of Love to you also, and prayers along with it that you are going to find something that will help many others. Like I said you are still young, and more adventurous than I am.  I do not mean to be negative in my way of thinking at all.  I feel blessed that I have gotten this far when I think back to my old days back in 1998.

     The one thing I do tell people is to go see your doctor every year for a complete check-up including complete blood work.  If I had not worked in my Oncologist's office, and did a blood test twice a year I wonder how long it would have taken for them to find my CML.  I was constantly tired, but my workload was like nothing anyone should ever have to do, therefore, I just kept saying I was overworked.

    My friends and family and especially the group of doctors I worked for were shocked at my diagnosis of Leukemia.

    I did not look or act sick, and thats why you never know what is going on in your body without periodic testing.

    I love Trey also,  he has been there with some great answers that the doctors did not even have.  I wish I could learn all that you guys have learned. 

   I am following along with your progress, and so happy for you.  I have to ask what does your wife say about the way you do things?  You must make her life very interesting

God Bless You

Susan

[Susan61]

Hi Pam:  Thank You so much.  Did anyone ever tell you how beautifully you write?  I have already planned on going down to 200mg.  My fatigue has gotten so much worse, plus the numbers going down.  I am starting to think that I am getting too much of this drug in me, and that I do not need so much of it after all this time.

     I am just feeling horrible lately, and I want to feel alive again.  I want to be capable of doing things, and wanting to do things again.

     I have only been with this Oncologist for 2 years, but I can tell by the way she talks that she is open to new things.

I think with my Old Oncologist who I loved dearly, and I wish he did not retire; looked at things in the old way.  He did not even want me to do the clinical trial for the Gleevec.  He sat there and said that they come up with these new drugs all the time, but nothing will work without a BMT.  I did all the research and phone calls myself to get into the trial, and then when he saw my progress he was amazed. He ended up putting his new CML patients on Gleevec after the FDA approved it.  Then he had me doing consults with these patients to encourage them to do it and not give up no matter what side effects they had. Everytime I would see him, he would ask me If I learned anything new to share with him.  I used to laugh.  I was no longer working for him, and I was paying him to give him information.

     I guess I am one of the oldies like Scuba said with the Interferon and Cytarabine shots back in 98.  Even Scuba with his positive attitude is looking for that cure that will kill those stubborn cells that are dormant and not being killed off at the root as I say.

   We have some great people doing all this research, and I wonder if I will still be around when they find the ultimate cure.