43 replies to this topic

[Riggered]

Just to say thank you to all who contribute here, its a great source of infomation and some comfort too.   

I've never blogged before so please bear with me......

 

Here's my condensed history:

 

2017

Aug 1. DX CML -BMB,BMA,QPCR,FISH, QPCR = BCR-ABL1 100% IS. WBC 103

Aug 4. Sprycel 100mg daily, Allopurinol 300mg daily

Aug 10. WBC 86.4

Aug 14 Stop Allopurinol

Aug 17  WBC 33.2

Aug 24  WBC 4.5 Onc say platelets are low

Aug 31  Onc says platelets are too low stop Sprycel for one week

Sept 7   Resume Sprycel 100mg EVERY OTHER DAY (recieved 30 day supply of 100mg pills on Aug 29, so we went to everyother day rather than throw them away. Original plan at this point was to reduce dose to 70mg daily.

 

Sept 14 WBC 3.6

Sept 25  All blood counts in normal range. Onc say come back in six weeks. No tests during this period. 

 

Nov 2. Next Onc appointment. Onc says  if all is well we will start Sprycel 70mg daily. 

 

I feel like my response to the drug has been great. I am feeling pretty good in this New Normal world. 

 

Here's my concern......I was having a tough time with 100mg daily. Liver pain and general feeling of my body working hard to get the drug out of my system. Sleep was also difficult. Since i've been on 100mg every other day i've been pretty comfortable with the side effects. The Onc wants to go back to the original plan and put me on 70mg daily. The way I see it 100mg every other day is the rough equivalent of 50mg each day. I'd really like to be on 50mg rather than 70mg. Any thoughts or infomation on this approach much appreciated.

[scuba]

When Sprycel is given for the first time - especially at diagnosis (your situation), it is necessary and smart to have complete blood count (CBC) tests done weekly while you are taking Sprycel. Sprycel at any dose can cause myelosuppression where some or all of your blood counts can get too low (platelets, neutrophils - in particular). You need to have your blood counts tracked weekly so you are not in danger of too low blood counts during Sprycel therapy in the beginning.

 

Dose interruption and dose modification is a strategy to match a dose you can tolerate which does not cause your blood counts to fall too low. Once you are stable - tracking your CML response (FISH initially and then PCR) every three months is typical (AFTER your stable). When your CML FISH test falls to zero, lowering Sprycel dose further is a strategy to avoid longer term side effects (pleural effusion and other issues).

 

In my own case, I had severe myelosuppression when started on Sprycel at 70 mg (I never was started at 100 mg). I had numerous drug breaks in order for my blood counts to recover. I was always tested weekly (CBC) while taking Sprycel. Once my blood counts rose high enough (never normal), I was re-started on 20 mg Spryce.l  Over time my blood counts stabilized in a lower range just below normal, but steady. I have been at this 20 mg dose ever since. My PCR fell rapidly even on low 20 mg Sprcyel and eventually fell to PCRU (no detection of 'CML') where I remain today.

 

It is very important that you have your blood counts monitored weekly (easy blood test using a finger prick) when you start Sprycel again.

 

p.s. Sprycel has a half life in the body of about 5 hours. 1/2 of it is gone in that time. Dr. Cortes at M.D. Anderson, a CML specialist, prefers patients to take a lower dose daily rather than a higher dose every other day for that reason. 

[Riggered]

Scuba,

 

Thanks for responding. 

 

1. After my one week break from Sprycel I was surprised to be instructed to take the 100mg every other day upon resuming the drug.

I questioned my Onc and asked if there was a danger of having a "saw tooth" like response by doing so. She responded that "the drug doesn't work that way".  Your comment about Sprycel half life of 5 hours appears to refute her assertion. I believe your comment is consistent with the data in the Sprycel literature.   

 

2. I had weekly CBC fingerprick tests for 7 weeks in a row after being diagnosed. I was surprised to be cut loose with no testing for 5 weeks once my CBC counts came into normal range. I understand your comment about myelosuppression. 

 

 

I looked at the 2017 NCCN guidelines for CML Patients. It doesn't specifiy weekly CBC testing. It calls out QPCR, and Bone Marrow Cytogenetics at 3 month intervals.  

 

Because I am feeling really good, I'm inclined to stay the course until my Nov 2 appt. when I will be getting a PCR test.

In truth, I don't relish changing to a new Onc. Curious if you think I need a second opinion about my treatment from another Onc?

 

Also curious about you taking Quercetin and / or Magnesium Taurate as well as Curcumin C3 complex. Can you point me towards info on these items?

 

I've been reading about "treating the terrain" and have drastically cut down on sugar and refined foods, no alcohol. Doing meditation, massage, accupuncture, have reduced work related stress as much as possible. Really seems to make a difference overall.

 

thx 

[scuba]

The NCCN guidelines are a good place to start, but keep in mind they are guidelines, not rules.

 

Another good starting source is Trey's blog on CML:

 

http://treyscml.blogspot.com/

 

As the science community learns more about CML, we are learning that many of us are unique in our response. One approach does not fit everyone. Unless your oncologist has seen many CML patients, it is unlikely that he or she is in a position to customize your treatment.

 

You feel good because your initial symptoms have been relieved from initial TKI and you are now off drug. Every day you are off drug, however, your body's CML cells are back replicating and growing in number. Potential for progression exists. The weekly blood tests are a means to catch when you are close enough to the normal range to re-start therapy rather than waiting. Your immediate goal is to get your FISH level to zero. Only by taking a TKI (in your case, Sprycel) can you get there.

 

Regarding nutrition support to 'treat the terrain' - boosting your immune system generally is a very good idea. Cancer occurs because our immune system fails to check it when it occurs initially. There are many competing ideas and studies on why this happens, but low vitamin D is growing as a possible culprit for many cancers. Vitamin D activates our immune system's T-cells. Vitamin D also causes blast cells to differentiate. Two very good reasons why I now keep my vitamin D level at the upper end of vitamin D range. I take quercetin because it has been shown in one study to augment the effectiveness of Sprycel in bone marrow. I take Magnesium for general heart health and prevent muscle cramping (which it has done). I take Curcumin because many studies have shown that Curcumin interferes with cancer cell signalling pathways and is a great anti-inflammatory (similar to aspirin in how it works).  Taken together, I feel it has helped me maintain an excellent response while taking only 20 mg Sprcyel. As a result I have no side effects that I can feel (although my RBC continues just below normal range). Nutritional support is no cure, but certainly helps in better health overall.

[kat73]

Riggered - Welcome.  Although all your questions and concerns are quite valid, it is way too early for you to be mucking about with your dosage.  Go back on Sprycel 70 mg daily.  Take note of how your body feels and report it to your onc, of course.  But realize that adjustment takes weeks to months.  Mostly months.  You have to give it time, both to work and for your side effects to either lessen, disappear, or declare themselves to be unmanageable.  The very first order of business is to get your measurements of what is happening with your leukemic cells, and for this you do the FISH test and then the PCR.  Until then, your WBC is only a bellweather of what's really going on.  You don't reduce dosage in anticipation of anything, you do it in response to something.  Patience and consistency are important now.  Studies have shown that the biggest factor in failure to stay in the chronic phase is non-compliance with therapy - in other words, not taking the drug (or enough of the drug).   

 

I can well remember how I felt when I was in the early weeks and months of treatment.  You get antsy and your mind is constantly mulling.  But you don't need CMP and CBC done every week.  Stay the course of 70 mg daily, see your onc at the 6 week mark, inquire as to the schedule  for FISH or PCR (and/or BMB).  Spend your intellect and energy on reading Trey's blog and collecting your thoughts and questions and observations, not on second-guessing and jerry-rigging your pills.  You are going to feel much better when you start to see those PCR's come downdowndown!  Keep us posted.

[scuba]

Kat - most of your comments are spot on. But I strongly disagree with one statement:

 

"But you don't need CMP and CBC done every week.  Stay the course of 70 mg daily, see your onc at the 6 week mark, ..."

 

Riggered experienced myelosuppression sufficient to cause him to stop treatment. Until he stabilizes, it could be dangerous to wait six weeks without a CBC to monitor blood counts while taking 70 mg Sprycel. I was started on 70 mg Sprycel and my counts fell within one week to dangerously low levels. If I had continued for another six weeks at that dose, I could have developed a severe life threatening complication. Weekly blood count monitoring at the beginning of treatment is vital to avoiding this problem.

 

As he is off drug, he can wait the six weeks. But advising him to resume 70 mg Sprycel without weekly blood count monitoring is not wise.

[kat73]

Scuba - I believe Riggered resumed Sprycel on Sept 7, and his CBC was normal by Sept. 25.  I believe he is on 100 mg every other day until his next appt Nov 2.  I doubt he would need 4 CBC's done before then - maybe 2 would be a good compromise.  At any rate, on a regimen of 100 mg every other day, after only 2 months of treatment and nothing but baseline FISH/PCR, I don't know what rationale the onc is using to go to 70 mg or 100 mg, either one over the other!

[Riggered]

Just to confirm Kat is correct on dates and doses in precedding above.

Thanks you both for all your thoughts and advice, I am absorbing and processing.

 

Looking forward, I know the plan is to have PCR on Nov 2. I am sure the Onc will pick a dose based on the results. I will be sure to discuss with her the rationale for possible reduced dose AND the importance of frequent CBC testing. 

 

I'm working on accepting its early days on this journey, so I will try not to over engineer, despite the AM radio playing in my head. 

 

Over the past weeks I've read through Trey's blog twice and am seriously humbled and grateful for the store house of info and experience found there. With each reading I absorb some more and i will continue to visit the well. (Huge thanks to Trey).

[Jan0080]

When my Oncologist lowered my dosage from 100 mg to 80 mg, I was left with an unopened bottle of 100 mg pills.  I gave them to my Oncologist's office.  CVS Specialty Pharmacy could not legally take them back and I don't believe that I could legally give them to anyone else. 

 

My Doctor said it was no big deal to have unused pills.  Neither CVS nor Blue Shield of Calif showed any concern.  I have no idea whether my Doctor was able to give the pills to another patient.

[Riggered]

Thanks for your insight on this. I use CVS and have Blueshield as well. My doc made a point of saying she likes to work with whats on hand. As long as my health is considered first in the equation, this seems OK...... 

[Trey]

The 100mg is too much for most people.  Plus the every other day 100mg is not the best approach since it shocks the body.  Sprycel has a short half-life in the body (about 5 hours) so taking it every other day has a much shorter body usage than with the other tki drugs which have a half-life of about 16-18 hours.  So I would take Sprycel daily and cut dosage to no more than 50mg, maybe less. 

 

Also, it takes quite a while for the body to adjust to these drugs.  During the first 6 months there will be many pains and issues, but most straighten out over time.

 

Further, most Oncs get too worried about low platelets.  Usually they stop or reduce the tki when unnecessary.  The platelets are stored in the spleen so the blood count does not tell the correct story.  If a person is a bleeder, then they should take a drug holiday.  And normally the re-start is at lower dosage.

 

If your AM head radio picks up Wolfman Jack, let me know.  If so, don't get into any Deloreans.

[Riggered]

I grew up in southern California during the 60's listening to the Wolfman transmitting from Mexico on radio XERB.  

On certain full moon nights I can still hear him.....outside the Delorean.  There's no cure for this. 

 

Thanks for your thoughts,  especially on the serious TKI related business. 

[Riggered]

I'm reaching out again having had an appointment with my onc today. its been five weeks since my last appointment on Sept. 25 with no testing during this time.   

 

To recap, since my DX on Aug 1, i was on 100mg sprycel for four weeks with weekly CBC and then my platelets were too low so I stopped the drug for a week. When I resumed, i was instructed to take the 100mg everyother day. My onc chose this path  rather than prescribing a lower daily dose because I coincidentally recieved 30 tabs of 100mg just as my platelets went too low. 

I've has anxiety about this "everyother day" approach as I can find no information that says its a recommended approach. In having read more I now understand how the half life works and believe that after 24 hours theres only about 3% of Sprycel left in the body. 

As of today i've been taking the 100mg every other day for approximately 5 weeks. 

 

I talked to the onc about my concern and she said I should not worry, that she has used this approach in the past. 

 

My experience today was discouraging. I went in for my blood draw and the technician told me I had missed an Oct. 7 appointment for a blood chemistry draw. I let her know I had no knowledge of this appointment. I then asked her about what she was drawing for today and she replied CBC only, I then inquired about the PCR test that is supposed to happen with this apppoinment and she told me she would draw extra blood in case the onc wanted the PCR done. 

 

I then met with my onc and it was obvious she was very stressed and super busy. She was confused about the Oct. 7 appointment and was surprised the tech didn't know about the need to draw for PCR. 

 

Upon review of todays CBC she told me my plateltes are too low, (now 86 previous 141) and that we might have to switch drugs as low platelets are a side effect of the drug. I asked if this was Myelosupporsssion and she said no.  

 

Backing up a bit.....Note that a week ago, prior to my apointment today I was informed that she had ordered 30 days of sprycel 70mg to be taken daily so that I would have meds on hand when my 100mg supply runs out next week. I don't understand prescribing  in advance of reviewing current tests......

 

in talking about the platelet issue I asked how it was possible to consider taking 70 mg a day given the low count issue when I have been been taking the equivalent of 50mg a day......She then agreed the prescription had to be changed to 50mg daily and she changed it right there in the office on her lap top. 

 

As our visit was wrapping up she told me not to worry that we would get a handle on my CLL. I pointed out that I have CML.....

 

She said she would see me in a month, no mention of following up next week on PCR test results which are expected on Tuesday. 

She also mentioned she didn't think I would get near the desired 10% PCR goal for 3 months. I have no idea why she would think this?

 

My overall impression of the onc's operation is good but it is overloaded, hence all the confusion and disconnects. Technology is heavily relied upon to keep things moving, but its all going too fast for the people to keep up. 

 

I don't have good confidence that I am getting the best care. I think I need a second opinion on whats going on.

Los Angeles is the closest big city. I'd appreciate any suggestions on a second opinion onc.   

 

Here are levels from todays CBC, high and low labels copied from report (previous values in parenthesis) 

 

WBC                 3.8                (6.2)

RBC                 3.81 low

HGB                14.9              (14.8)

HCT                 35.7 low       (44.9) 

MCV                93.8

MCH               39.1 high

MCHC            41.7 high

RDW              15.4 high

Plat                 86 low         (141)

MPV                11.5

Gran%             66.3

Lymph%          26.9

MID CELLS %   6.8

ANC                   2.5          (4.5)

Lymph#              1.0

Mid CELLS #      0.3

 

Any thoughts or suggestions much appreciated. 

[scuba]

Your CBC actually looks pretty good except for platelets. How many CML patients does your doctor treat? 

 

You are in the early stages of CML management and I would not give up on Sprycel just yet. The fact that it is "suppressing" your platelets could be an indication your blood system is very responsive to Sprycel. That means the CML cells are responsive to it as well and die. Lowering your dose to manage response (and low platelets) is a good approach. You may be able to achieve very good PCR results on a much lower dose. This may help you avoid toxic side effects.

 

You need to have weekly CBC blood tests until your CBC stabilizes while taking the lower dose Sprycel. Once that happens (and it will), monitoring FISH / PCR will be more useful. Platelet count below 40 should cause you to stop taking sprycel (until your platelet count rises to low normal, then resume Sprycel). Platelet count below 20 is dangerous. Platelet count below 10 requires transfusion. These values are not absolute but close. In addition to platelet count - keep an eye on your ANC abstolute numbers. Your RBC is low too, but your hemoglobin and hematocrit are very good (all else considering).

 

Daily dosing is best.

 

(by way of comparison - I started on 70 mg Sprycel and my blood counts cratered - ANC as low as 0.1 , platelets 50, RBC 3.5 ... etc. Dr. Cortes had me do a series of drug breaks which over time worked. And in the process we found that 20 mg was the effective dose and I am PCRU today (I still take 20 mg daily). If I had not had the weekly CBC testing I would have ended up in the hospital or dead. At no time did he suggest switching drugs because he thought my system was very responsive to Sprycel - so we manage the myelosuppression and find the right dose which is sufficient to work. )

[Riggered]

Scuba, thanks so much. Everything you stated makes sense to me.
Now I wonder how to manage
this with the doctor. Do I call her up and say I want weekly monitoring? And if she says no? I move to another doctor?

This is just new territory for me in the land of doctor / patient relations. I'm used to following doc directions,
But I feel a strong need in this situation to push to get what I believe is needed. That said I'm not a doc.


I'm not sure how many CML patients she sees but she seems to be the top onc in our local
community.

Btw, any thoughts on getting a flu shot while on SPRYCEL?

[LouiseS]

Hi Riggered

My husband was diagnosed about a month ago so similar to you. He has been on 100 mg of Sprycel for a month. He has been tested weekly and I am just looking at his results as he as a mtg with doctor tomorrow. His platelet count is at 300 compared to 162 ten days ago. His WBC is similar to yours at 4.1, his hgb and htc are lower but the hemoglobin is going in the right direction. His RDW is higher than yours at 20.2 and has risen a little but it says ( googling) that this can be caused by iron deficiency / anemia and we haven't got those tests back yet. His MCh and MCHC are normal. His neutrophils are a bit high and abs lymphocytes are too low but everything else looks good.

The doctor ordered lots of other tests for liver, Uric acid, anemia but not posted online yet.

On one of the CML Facebook sites a member posted about an MD Anderson study that tried CML newly diagnosed patients on a starting dose of 50mg of Sprycel. The trial has had good results . If I remember correctly 93 percent patients reaching the 3month milestone of being under 10 percent. We will raise it with the doctor tomorrow because although my husband is doing well on Sprycel ( his WBC was 22k a month ago) I am worried about longer term effects and he is fatigued at times. I also worry that he is sometimes breathless but it's hard to know if that is the Sprycel or the CML.

His doctor is not a CML specialist but an oncologist / hematologist who has many other CML patients. There is a specialist in SF whom we have heard great things and if things weren't going well ( we hope) or we weren't happy with our doctor we would switch to him. I think it's so stressful as you adjust to this diagnosis that you need to have confidence in your doctor. You don't need the additional stress.

If we get any good advice tomorrow after the visit I will post it.

[LouiseS]

My husband got the flu shot about three weeks ago. Doctor recommended it.

[chriskuo]

Louise,

 

Unless there are serious problems, you should not think about changing dosage in the first 3 months.  Until you have a BCR/ABL test, you really have nothing useful to go on regarding efficacy.  Very few doctors treat CML patients only and you do not need one of the top specialists unless you are one of the minority who do not get an acceptable response in the first 6-12 months.

[scuba]

Louise,

 

Unless there are serious problems, you should not think about changing dosage in the first 3 months.  Until you have a BCR/ABL test, you really have nothing useful to go on regarding efficacy.  Very few doctors treat CML patients only and you do not need one of the top specialists unless you are one of the minority who do not get an acceptable response in the first 6-12 months.

 

When first starting Sprycel, it is very important to have weekly CBC tests to monitor normal cell blood counts. This is especially important when the starting dose is 100 mg. In Riggered's case, Riggered has a serious problem. In addition to pain, her platelets are too low. This is a red flag that Sprycel is causing myeloid suppression. It is likely temporary as Riggered's blood system adjusts and becomes near normal again.

 

Changing dose - even temporary interuptions - in order to get the blood system through this period is exactly what should be done. BCR/ABL management is secondary until successful continuous dosing is possible. As long as Sprycel has demonstrated a reduction in BCR/ABL, there is an excellent chance that Riggered will be able to find a much lower Sprycel dose (likely 40 mg) that Riggered can take every day, not feel any side effects (avoid pleural effusion) and have BCR/ABL continue to trend downward perhaps even plummet dramatically. Should this not work, then a drug switch is warranted.

 

(note on dose: I just returned from a conference where immune oncology was discussed. The topic of "dose" response and clinical trial design was a dominant theme. Many are reporting that full dose is not necessary for many drugs in order to have sufficient efficacy in disease response and avoid (or greatly diminish toxicity). Many current protocols are designed to test toxicity tolerance first (how high a dose can they go before bad stuff really starts to happen) in order to set the dose. When this dose level is found, efficacy is tested. Nobody knows what dose is correct and most importantly, what dose is correct for that one patient being treated. This is becoming a hot area of research in many drug development efforts.)

[kat73]

Riggered - I agree with all the above advice.  Your PC can order the weekly CBC/CMP, if you're reluctant to get into that "telling the doctor what to do" thing.  You have gotten off to an unnecessarily rocky start and I'm so sorry.  We just don't seem to be able to "deliver" medical care in this country in a consistent, efficient, and aware way - no matter how much "patient-centered care" baloney is spouted.  I think you're right about the technology foul-ups.  The best care I ever got was from two Old School docs who practiced alone with one nurse, one office person (one had his wife in that role), and they kept WRITTEN (as in, by hand) records and bills.  Never once had a screw-up in twenty years.  You have been understandably upset by crossed signals, miscommunication, odd asides and a seriously deranged practice set-up.  You must try - you shouldn't have to, but - you must try and ignore all this.  You don't need to worry about platelets until they are down around 50 and all your other labs are fine.  Many things are screwy in the beginning and they right themselves.  Doctors never seem to want to explain WHY a value is screwy, but there usually is a science-based reason for it.  Another thing I learned was that even when a lab value is not in the normal range, not to freak out because the reality is that it would have to be tons and tons and tons higher/lower before it means something bad. 

 

I think your onc said that unbelievably cruel thing about the 3 month mark because your dose has been intermittently taken and going forward you are on a reduced dose.  But I wouldn't be at all surprised to see you make the mark.  And, if you don't, many people here who have been subsequently successful (me included) have not always made the deadlines right on cue.  Scuba is right that it looks like you are having at least a hematological response.  A quick and deep CML response is ideal, but any response is a very good sign.  You must wait and see what the PCR says. 

 

Your story stirs terrible memories of how I was handled in the very beginning.  I was just whirled around by unknowns and a complete wall when it came to understanding how I felt.  I, too, remember being told to come back in a month, as if it was the most casual no biggy - a case of poison ivy or a sprained toe.  A whole MONTH???!!!! I screamed internally.  I can't make it that long in this uncertainty and confusion.  Every minute of every day I felt I was doing something terrible and irrevocable to my body, and yet I was brushed off with no explanation or reassurance, no science, no rationale, no hope for a better future.  They can be very cavalier because:  They've seen a million of you.  Most of their patients die miserable deaths and you won't.  So go away and be grateful and come back in a month.  They've never had CML and they've never taken a TKI and they don't know how it feels and they don't care as they are busy with the dying patients.  They also don't know the answers because all of this is pretty new and there's more new stuff every year.  They don't like it when they don't have the answers.  That said, some are better than others.  Many people on the forum have changed doctors.  I went from my initial community-based hem/onc to a CML specialist an hour's drive away.  Night and day.  Many of us travel much farther. 

 

Time will tell for you.  But know this - you're not crazy or hysterical or asking too many questions.  You deserve more attention and care than you are currently getting.  You will get through this confusing stage.  Keep us posted!