I saw my Oncologist yesterday and was told that I should expect to have treatment starting sometime in the upcoming year. I kinda thought I was doing pretty well on watch and wait for the last two years, and I am actually feel pretty good. There are no B symptoms. I have gone into Stage 2 with a slight enlargement of my spleen and higher WBC of 150K, Hemoglobin 107 and Platelets 175, Lymphocytes have doubled in the past year. I think the Hemoglobin is the main concern, I know when you go under 100 a lot of oncologists look at this as a treatment marker. I have started taking iron pills. I see my oncologist again in 6 weeks. My question is what Hemogloben levels have others had when they started treatment. My dilemma is I believe the longer I can wait is beneficial in the long run, but I want to be as strong as possible to handle any treatment. Thanks so much for any comments.
Starting Treatment Dilemma: I saw my Oncologist... - CLL Support
Starting Treatment Dilemma
Did u mean 10 for HGB?
I was down to 8.3 Since in the 7's is dangerous, I agreed to start treatment. They said iron pills do nothing to help.
Get second opinion. 💕
In Canada, a Hgb of "10" is displayed on the lab results as "100" - different units used. Different by factor of 10.
Thanks!
So 9 is 90?
Is the range the same as USA. For example under 11 (110) is considered anemic?
At my lab, reference range for female is 115-155 g/L. I think for male, the range is slightly higher.
So in US numbers, that would be reference range of 11.5-15.5
My hemoglobin was much lower than that by the time I started treatment (ibrutinib). But then I probably waited too long. I had become transfusion dependent by that time. So it's also important to not wait too long.
Are you seeing an actual CLL specialist? A doctor who sees nothing but CLL patients? Because other specialists (general oncologists, general hematologists) tend to pull the trigger too early on treating CLL. A CLL specialist will know exactly how long to wait, since it is always a balance between controlling symptoms vs treatment toxicity for treatment that could potentially last a lifetime.
I am seeing a CLL oncologist, he's very knowledgeable but doesn't discuss too much of his findings. I tend to want to know everything. I'm grateful to find out where others have started treatment to help in my decisions. Thank you.
My hgb was 65, with each transfusion bringing me back up to 85 for a couple of weeks. Would have been better to start treatment before I got to that point. But then again, if I had started earlier, I wouldn't have gotten ibrutinib. I wouldn't have qualified. I would have had chemo (FR) instead. And in retrospect, I am very glad to be on the ibrutinib.
kim
Down into the 9’s for nearly 12 months for me. Yes, below 10 is a signal to consider treatment especially if the trend is down. I was told not to bother with iron pills but did include iron rich food into a balanced diet.
How did you feel when you were into the 9's. Was there a big difference from 10's. Thanks.
Weird thing for me was, I was the Energizer Bunny (in USA that is a commercial for battery with lots of energy and lasts long). I was shocked when my doctor said that I was anemic.
I was never tired. When it was down to 7.9 at treatment time, I was still full of energy.
I feel fatigued but still golf and play tennis. I know I'm not 100% by any means. I just want to wait until the best time. Thanks for your reply.
I have b-pll. I was at 8.3 but i also had 450,000 wbc and about 440,000 alc. I was started on ibrutinib immedietly. that was jan 7 2019
Lymphocytes are 145K.
do you hear a pulsating in your ears-especially when laying down.
I've have plugged ears and ringing for awhile. No pulsating though.
Par3, my question is about the iron supplementation. If your Dr. said to take iron, then you should be okay with that. However, if you have done that on your own, you could cause yourself some harm and get too much iron in your system.
Anemia, low Hgb in CLL is not limited to ferritin levels. It is complicated and any treatment needs to be specific to the cause.
So, if you have begun taking iron without Drs. direction, please see your Dr. and and discuss that with him/her. If I were you, I would not wait for the 6 weeks to ask about it--a call would suffice to get Drs. assessment of your ferritin status.
I did have a surgery a month ago that has some blood loss. I did get the script from the oncologist. Thanks for you concern.
Agreed,
There is much more to metabolizing iron than taking a pill.
There are factors that regulate and control the methylation process in the body that produces the proper absorption and distribution of iron or any element.
Just adding a supplement of any kind can actually cause the body to devote resources for collecting and excreting that would otherwise be used in normal function for ridding the body of extra substances that cannot be made useful. The product is "stress".
For a person with illness such as CLL, the body is already functioning abnormally as it tries to overcome the byproduct of the disease. Under this condition, adding substances that are not metabolized actually oppose the desired outcome.
It is very important with CLL to have an accurate measure regarding suppliments from a qualified source, as CLL is a progressive disease. Even if a supplement is helpful at an early point of measure, it can be a hinderance as the body deals with an stress increase such as with tumor burden, cytokine release, blood urea etc...
Equally important is to have the established base line measure so that symptom influences can be identified and managed as opposed to the desperation flock shooting approach.
Definitely involve the Dr.
Good advice cllady01,
Keep it coming,
JM
I would suggest that you do an iron panel before starting an iron supplement. It will measure serum iron, ferritin level, transferrin, and TIBC in %. If your ferritin is normal to high, but others are low, this could be anemia of chronic disease or anemia of inflammation. Iron supplements by pill may not be helpful. MCV is also a good indication. It is part of the CBC test. If MCV is low, it could be iron deficient. If MCV is high, it could signal B-12 deficiency. You will need to work with a hematologist to figure all this out.
My husband was at 9.9 and he felt lousy. We waited a little too long because he too felt pretty good. When the hemoglobin hit 10 we knew for sure. It is hard to say go ahead with treatment when things seem fine, but they change fast and you don’t want to be too sick when you start. Best Wishes!
Find CLL specialist that will take time to talk to you and explain anything you want to know.
Timely treatment, particularly now there are non chemo alternatives such as Ibrutinib, is preferable to extending the watch and wait period beyond the point at which B cell symptoms and general health are being seriously adversely affected. Crossing the treatment bridge on this CLL journey inevitably brings a certain degree of anxiety but it can often also open the door to better quality of life and a stabilisation of the disease. Good luck.
Hello Par3
I was down to 9 on Hemoglobin about 3-4 weeks before I started treatment with B+R. My CLL was so aggressive that I would have required blood transfusions within month or so. Just my personal opinion, but you don't want to wait too long before treatment, give your body best chance to deal with any side effects. I also had mild B symptoms. Blessings.
Hi Big Dee, How was your experience with BR? My haematologist is recommending it as my first line of treatment and I have not taken a decision yet. I am 50yrs. Other than uncomfortable enlarged nodes, my other markers are acceptable.
Hello Enice
First off let me give you some details. I am almost 72 years old, was diagnosed in Sept 2017. I was 13q deleted and un-mutated. I had very aggressive CLL and did not have CLL 6 months before I was diagnosed with CLL (due to other blood testing). My CLL was very aggressive went from 13K to 197K WBC in 14 months. Had slight enlargement of lymph nodes in neck, arm pits and groin. I had slight enlargement of spleen. In USA they do not give FCR to those over 65 years old. Other than CLL am in fairly good shape. I had all 6 rounds of B+R from Nov. 2018 to April 2019. First round was not too bad, had slight fever, rash for 2-3 weeks, and hiccups for 1-1/2 days. I was little woosey for couple days after each round. Round two had 103+ fever second day, put in hospital for sepsis testing for 5 days. I did not have sepsis, had different red spots, hiccups for 5 days. By rounds 3 through 6, we had figured out what to do about fever and hiccups. I would take Tylenol and liquid Benadryl for 24 hour after B+R round. Did very well for rounds 3-6. In all cases I reviewed use of Tylenol and Benadryl with doctors. I had nuelasta shots after rounds 2-6 of B+R. I dropped from 197K to 18K WBC first 10 days, then down to 6.2K just before second round of B+R. I feel great and all enlargement of lymph nodes and spleen is gone. Blessing, hope this helps you with your decision.
Thanks, all the information is helpful.
Hi Par3
My hemoglobin dropped below 10 and kept falling. even after treatment started. Turns out my bone marrow was infiltrated 92%. I needed 3-4 blood transfusions. I waited too long and it wasn’t pleasant. Hemoglobin fell to 5.3. Our tendency is to wait as long as possible but waiting too long can be a real problem. Interestingly, leading up to treatment I also felt fine. I never had B symptoms. Best to you,
Mark
Thanks so much, a lot of insight in Hemoglobin levels.
Hi Par3, my symptoms were very similar to yours...my Hb was dropping each time I had my bloods checked, and when it went under 100 my Haematologist wanted to commence FCR. I guess because of my age and general wellbeing (apart from CLL), he wanted to get on to it. It's coming up 2 years since I finished chemo and mostly I feel great.
All the best to you 
Great to get all these experiences. Thanks.
Hi Par3 I was only diagnosed in August so no treatment yet
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