Hi y’all, Just received results of first CBC since on Spyrcel. Reacted great in a months treatment with few side effects. Fatigue and some increase in depression but dealing with this. The thing that has me concerned is the drastic decrease so quickly. WBC 3.4, hemoglobin 9.9. Hematologist said I might need a transfusion if continues to go down. No changes in dose yet at 100 mg. The lowest she is willing to go sounds like 80 mg. But not yet. Any advice? I really trust you guys. Don’t think she will ever be willing for 50 mg. This has me concerned as well. Thanks in advance and have a happy weekend.
You are here
Low hemoglobin
Hi Dawn,
It saddens me when I read about doctors saying stupid stuff to their patients. You won't need a transfusion.
You should have weekly CBC blood counts and if your numbers fall too low STOP taking Sprycel and let your system recover. Your initial dose of Sprycel is almost certainly too high. If he is not willing to stop your treatment in order to let your blood counts recover then you need a new doctor.
Suggested protocol:
1. blood counts dropping too much (myelosuppression).
2. Stop drug until blood counts recover.
3. Re-start drug on half dose once blood counts are safe.
4. if blood counts fall again upon re-start, stop drug again until blood counts recover.
5. re-start drug on 20 mg.
6 if blood counts fall again - repeat 4 and 5.
Eventually your blood counts will stabilize lower, but will be safe and you will be able to stay on 20 mg.
Your blood counts will slowly normalize to near normal or better. Track response to verify low dose is working.
if not, increase dose to 40 mg and re-start the above (i.e. 4 and 5) except with 40 mg instead of 20.
You will succeed. Right now your are destroying your leukemic system and replacing it with your normal blood system. It takes time (many months) for this transition to healthy blood to occur. The fact that you are experiencing myelosuppression may be a good thing - evidence shows that patients who develop myelosuppression early in treatment with Sprycel have an overall deeper and better response than those who don't AND on a much lower dose.
I have linked elsewhere on this forum research articles on these results. Show them to your doctor so he is educated.
I went through what you are going through now and with a much lower blood counts - never was suggested a transfusion! All my doctor did was stop my treatment - monitor my blood counts weekly until recovery and then restarted me on 20 mg. Sprycel. I am PCRU and continue to take only 20 mg.
Sprycel is potent when it works. No need for 100 mg for many if not most patients at initial dosing. It is the wrong starting dose.
disclaimer: I am not a doctor - my suggestions above is based on experience and lots of study. Finding a doctor who knows the disease and researches it is important in the beginning. Your good news is - many have gone through what you are going through now. You are going to be fine.
Thank you Scuba , yeah I was surprised at that transfusion comment too! I may have to find another doc for the lower dose. I don’t believe she likes me researching stuff and making suggestions. Thank you for the encouragement and info. I think you are right on the money with your research! Thanks again, Dawn
Dawn,
I just want to weigh in that it's possible your blood counts are not unusually low for a CML patient on TKI. My WBC went down to 2.7 and hemoglobin down to 7.6. That was in early weeks. I have been on 400 mg imatinib since diagnosis in April 2017 and have never had a pause in drug. WBC now hovers around 3 and hemoglobin around 11. Not great, but fine. I have never had so much as a sore throat since diagnosis so my immune system appears to be fine. Fatigue is my biggest problem but I also experience depression ... do I really want to feel this way for the rest of my life? But as others have so wisely and frequently said, we need to focus on our great good fortune, and things will almost certainly get better. Great advice as always from Scuba! Best wishes and courage to you as you work with your doctor, whoever it may be.
Justine
Curcumin and Depression:
https://www.ncbi.nlm.nih.gov/pubmed/28236605
https://www.ncbi.nlm.nih.gov/pubmed/28236605
There is emerging evidence that taking Curcumin supplements (greater than 2 grams per day) can be helpful in treating preventing depression.
Although I am never depressed - too much life going on around us, my wife had a brief spell which I did not fully understand (typical husband being oblivious to obvious signs). When I finally clued in what was happening, I suggested she take the same Curcumin as I have been taking. She had an almost immediate uplifting response. Seems there is something to this Curcumin helping with mild depression. I take it to combat inflammation and CML. She takes it because it improves her mood.
Do an online search "curcumin depression" and you will see many articles on the subject.
I would like to second Justine's caution. Many of us have been through the alarming early drop in blood counts and the important thing is not to over-react. Most of these numbers can be way lower and not be cause for either stopping the TKI or having Neupogen shots or transfusions. In some cases, as Scuba will attest, you do need a re-set because the numbers are TOO low. I think he's probably right that in the future the starting doses for some TKI's will (or are now) be coming down, in order to avoid these precipitous drops. BUT. Remember the very most important thing is to get the CML under control. It is unwise to constantly be starting and stopping in the early days. Most of the time the myelosuppression should be ridden out, the TKI continued as the doctor keeps a close eye on the numbers. Most of the time there will be no clinical harm and the numbers will stablilize, usually lower than before, but sufficient for a normal healthy life. By the same token, the goal is not to lower the TKI dose as soon as possible. The goal is to get to negative FISH (CcyR) and then MMR. This can, happily, come very quickly for some people; but for others it can be months or years. To lower the dose before then is foolhardy.
Ask your onc or your GP what the lowest parameters are for the blood counts before a dangerous level is reached. The info may surprise you and relieve you.
Hi Kat,
You wrote, "It is unwise to constantly be starting and stopping in the early days. Most of the time the myelosuppression should be ridden out, the TKI continued as the doctor keeps a close eye on the numbers. Most of the time there will be no clinical harm and the numbers will stablilize, usually lower than before, but sufficient for a normal healthy life. By the same token, the goal is not to lower the TKI dose as soon as possible."
I need to point out that 'starting and stopping' TKI's (particularly Sprycel) in the early days is what is strongly recommended in managing severe myelosuppression. This is exactly what Dr. Cortes at M.D. Anderson did with me and others. I asked him about the "danger" of no medication. He told me that balancing my blood was far more important at this stage than anything else. He told me that CML - even at diagnosis when blasts are few or not present - is a chronic condition that will take months to attack and that we have time to first manage blood response. Myelosuppression, however, when severe can kill. In the early days, a patient doesn't know how deep their myelosuppression will go. I was told in no uncertain terms that by staying on my TKI to "ride out" mylesuppression it could put me in the hospital or die within 24 hours. I was told that should I develop a fever of as little as 99.5 degrees that I was to get myself to an emergency room and not wait until the next day. My Neutrophils plummeted from 0.7 to 0.1 in less than a week. My point is that 'managing' myelosuppression through the transition phase is best done in a pulsing manner of on again off again therapy until the body adjusts. And the goal is in fact to lower TKI dose in response to myelosuppression (and pleural effusion as well). My first doctor wanted to give me Neupogen and stay on full dose. Dr. Cortes said no - Neupogen will stimulate my cancer and since I had few blasts I had time to "pulse" therapy and get my blood adjusted. My first doctor had two CML patients. Dr. Cortes - hundreds and hundreds.
I agree with Kat about bringing down disease burden
as quickly as endurable after first diagnosis.
It’s a tuff few months but necessary to determine your
specific disease aggression. Everyone will be different.
Some easy some harder.
Your disease is a separate entity living in your body and
has it’s own attitude about who’s boss. Who will win?
Your body and your mind, or the disease. The CML..
Your body is the battlefield. The drugs are the bombs.
The numbers are the score card.
No one number or sideaffect, or incident will decide who wins.
Get up and do it again! Beat the demon.
The first few months are your training school
Learn everything you can. You need to become an expert, real fast.
Get your CML numbers down as fast as possible, as fast as you can stand.
When you get them in MMR. Take control, because you are in the safe zone.
Most people of reasonable health win this war.
...please forgive me.
But it’s not without cost. Going fishing has a cost.
You could prick your finger with the fish hook,
get a flesh eating bacteria, get enrolled in a trial to have
your head and brain cut off and Cryogenic preserved, and sent
into outer space on a long journey for some planet and humanoids
to find you on their planet and thaw-out your head and you guys
can have a great conversation.
Romo
Serious not serious.
Hi Dawn,
Scuba is very right in what he is saying. I am on 100mg of Sprycel, have been since diagnosis on the 19/7/18.
My response has been great going from BCR-ABL of 110% to 10% in six weeks.
But blood counts have been an issue, my WBC went from 10.1 with 6.3 Neutrophils, down to 2.2 with .7 Neutrophils in 4 weeks.
This resulted in three days worth of stim shots, which produced ridiculously intense bone pain.
Of course WBC did go up, from the 2.2 with .7 Neutrophils to 12.6 with 9.7 Neutrophils in four days.
Sounds good.
Four days later, last Monday, it was backdown to WBC 5.3 with 1.9 Neutrophils and a reappearance of immature wbc.
I'll be interested to see what they are this week but I certainly won't be doing stim shots again. Im pushing for a dose reduction.
Thank you Kat, good information. So helpful to know others experienced the same. So far no change or stopping of 100 mg sprycel
My treatment started July 5th on 400 mg Imatinib. It drove my counts way down, so low that I stopped for 13 days. Resumed on August 20th and numbers still continue to get better, slightly, but I'll take it. Thankful to now be off weekly blood tests. Have first qPCR draw on September 17th. If the results are good, my onc will clear me to travel to Europe in October. As with most of us, the initial shock of having leukemia led me to think that I might have to cancel this long planned trip.
My rbc and hemoglobin are still below normal, but onc says it may be new normal.
Hang in there! We are all in this together.
Blessings and all that is good!
Romo - sorry to disagree ...
"Get your CML numbers down as fast as possible, as fast as you can stand.
When you get them in MMR. Take control, because you are in the safe zone."
I want to be clear:
Getting CML numbers down as fast as possible is an emotional reaction to the fact we were diagnosed with a cancer that before TKI's KILLS in less than 5 years.
I wanted to be cured the NEXT DAY after I was diagnosed. I wanted it gone. I'm sure most of us felt that way. But everyone needs to keep in mind that CML took years to grow in our bodies ... slowly taking over our bone marrow blood system. By the time we were diagnosed with symptoms, CML had nearly 100% of the blood system and red blood was going away. Of course we wanted it gone - as fast as possible. But if you could do that, you would die. You see, leukemic cells, as bad as they are - are still functioning - somewhat. What you want to do is reverse the process and have your normal blood system take over the leukemic one. You do want to do this a fast as possible, but only as fast as the normal blood system allows.
Let me repeat:
What you want to do is reverse the CML cancer process so that your normal blood system returns and takes over from the leukemic one. THAT TAKES TIME.
Myelosuppression is a direct result of rapid leukemic cell death and replaced with nothing much. Severe myelosuppression can kill you in 24 hours.
So as long as blasts are under control (i.e less than 2-3%, ideally zero) - you have time.*
Managing dose, managing response so that your normal blood system grows back including your immune system so it too can attack the cancer is vital. This is why they are discovering that lowered starting dose of Sprycel is yielding BETTER response. Imagine that. They are now recommending dose interruptions to manage myelosuppression rather than stim shots at full dose.
I realize this is hard to accept. Nobody wants slower when faster seems better. More drug rather than less. But faster and higher dose is worse if myelosuppression sets in. Myelosuppression has to be managed.
(*note: Blast crisis is an exception. Blast crisis requires immediate attack to get rid of the non-differentiating blast cells. It is blast crisis that kills in CML. Without blasts, you have time to work the problem. In Blast crisis there is no time.)
Still friends - Romo? (you too Kat!)
Like when less is more. 
My situation worked for me, your situation worked for you.
Not everyone gets severe myelosuppression.
As for being friends, I’ve been married for 30 years
and expect to be married many more.
I’m a professional disagreer.
Take care my friend..
Romo
Yes, Scuba, still friends. My point is that many of us are uneducated as to the differences between mild, moderate, and severe (life-threatening) myelosuppression. For this lack of knowledge, I squarely blame the medical establishment. When newbies see the tanked numbers in boldface on their lab reports, they understandably are distressed. How nice a world it would be if their onc would give context and parameters and reassure them that they're safe and the onc is aware and watching the trend. "No need to step in until (fill in the blank)" would help a lot. All I'm sayin'.
In regard to myelosuppression:
Neutrophils are the key white blood cell which protects against bacteria and is watched the closest.
Neutrophils > 1.5 - 8.0 is normal (1500 - 8000 cells/mm^3). Some labs have normal 1.7 - 7.0.
Neutrophils > 1.0 < 1.7 is below normal but perfectly adequate for protection. Many CML patients live with these levels as their new normal.
Neutrophils > 0.7 < 1.0 is a concern and should be watched closely.
Neutrophils < 0.7 - TKI discontinued until Neutrophils rise above 1.0 and then re-started.
Neutrophils < 0.4 can be dangerous and puts patients at significant infection risk (severe neutropenia)
(My neutrophil count went as low as 0.1 ... no stim shots, just TKI cessation for many months while my counts recovered. No fever so I was o.k. My counts rose to 0.4 in a week and then to 0.7 over several more weeks. It took 3 months to rise over 1.0 when I re-started Sprycel at 20 mg. Most people would have a much faster rebound. Mine was slow because of other reasons. )
Mouth sores are typical for patients with mild neutropenia - neutrophils < 1.5 and usually resolves as leukemic neutrophils are replaced with normal ones.
Other myelosuppression to watch for is platelets. Not typical, however as neutrophils tend to be hit the hardest.
Yes bcr-abl. Mine is at at 10.0585 from 61.8855 . My doctor is trying to give me Neupogen beause my WBC is around 3.2 and my Neutrophils are around 1.5. I am on Sprycel currently! I have been off my medicine for a month now. I caught the flu and my WBC went down to 2.6 and neutrophils went up to 2.0 then after the presribed antibiotic and feeling better MY WBC is at 3.2 and neutrophils 1.5.
My doctor avoided giving me Neupogen when my neutrophils fell to 0.1 - He said it can stimulate the cancer as well as normal cells. He said it was best to let my neutrophils recover naturally while off medication. I did this several times (on/off sprycel) as my blood counts normalized.
BCR-ABL (same as PCR) at 10.1 down from 61.9 is good progress. Sprycel can have strong myelosuppression so good to be vigilant. But over time, your counts will normalize and bcr-abl will continue to drop.
Your next milestone is bcr-abl <= 1.0 %. bcr-abl < 1.0% is associated with > 95% progression free survival (i.e. you have beaten the disease). I have little doubt you will achieve that mark.