Good morning , this is my first post and have been following the site for a few months .appreciate all the info VERY much . i am 73 year old male . healthy for my age except for CLL diagnosed in april . i am at stage 3 already .... my first visit to oncologist prescribed calquence . so far i am not taking any meds . i am seriously anemic with a hemoglobin of 7.6 - hematocrit of 24.8 ---c-reactive protein at 42.3 -- WBC count 17.3 . i also had a fish and flow test that medicare won't pay for . with my anemia my brain is not always working well . i cannot figure out how to add my test results to this post .. other than the night sweats the fatigue ,itchy skin my main problem is the tingling ,burning pain just to the left and slightly below of my breast bone .sometimes it extends all the way around to my spine. plus i cannot eat much without feeling very tired .my spleen per ct scan , 5 months ago measured 22.1 cm. long and 17.3 cm axial . it is causing much discomfort ..not to mention the possibility of having it rupture .. i am seriously thinking about having it removed .. any advice about my blood work or my spleen removal , from this wonderful group would be greatly appreciated . thanks in advance , james oregon , usa
blood work info and possible spleen removal - CLL Support
blood work info and possible spleen removal
Hi James,
This site only allows the attachment of one image per post or reply, so you'll need to reply to add your blood test results. You have shared your immunophenotype flow cytometry blood test, which confirms that you have the typical CD pattern of expression for CLL.
It's been about 30 years since top MD Anderson CLL specialists published a paper recommending splenectomies as a means of extending survival with CLL. Not long after that, one of the authors of that paper, Dr Michael Keating, was instrumental in developing FCR, which became the gold standard CLL treatment for nearly two decades. FCR is a chemoimmunotherapy treatment, but has been surpassed in your age group by much more selective drugs, with Calquence being one of the best, recently approved drugs. This growing number of increasingly effective treatments which very effectively shrink swollen spleens has resulted in splenectomies only being used as a way of treating auto-immune conditions with CLL, when the usual treatment drugs aren't effective.
A large enough spleen is now one of the recognised treatment triggers, as is a haemoglobin count under 10.
Calquence/acalabrutinib is a very effective treatment and if you start on this, you should soon feel much more comfortable with a far less woolly brain as your spleen shrinks and your haemoglobin improves.
Neil
Hi Neil , thanks very much for responding to my questions so quickly . you and jeff always give knowledgeable and encouraging answers which are very much appreciated . one of the reasons i was reluctant to start on the calquence is because of one of the possible side effects listed is anemia . so i thought i had better bring my rbc count up before i start on it just in case it makes my hemoglobin count worse .. it sounds like the researchers are really starting to fine tune the treatments giving relief and hope to many of us . my oncologist is a 5 1/2 hour round trip away so i have only seen him once .when i ask him about having my spleen removed his only comment was " no. you don't want to do that " he wants to do more blood work to narrow my condition down even further . God bless ! james 3 rd. John verse 2
I'm about the same distance from my specialist - one way! 
Jeff has a valid point about AIHA, per his experience.
How are you trying to lift your RBC? If your haemoglobin drops below 6, you risk organ damage, so you don't have much leeway to play with. I needed two red blood cell transfusions a month after I started Calquence, but I was concurrently on IV antibiotics for febrile neutropenia. After completing a clinical trial with Calquence, Gazya and Venclexta, my haemoglobin is the best it's been in 15 years.
You really don't want to lose your spleen. It's an important reserve store for blood, including importantly neutrophils, which protect against infection. Without it, you'll likely be prescribed antibiotics indefinitely.
Neil
Neil , i thought my distance to the onc. was bad yes i was surprised that my doctors weren't more concerned about my anemia .. it was 8.2 a couple of months ago and last month it was 7.6 .. i was the one who actually suggested i get my vit. d , vit b and iron levels checked .. b and d mid range . iron not good . i was at my family doctors 3 weeks ago and he suggested i up my supplemental iron intake to 75 to 100 mg. per day . i have been taking floravital liquid (ferrous gluconate ) 40 mg. dose in the morning 1/2 hour before breakfast ... and two 25 mg. capsules of ferrous bisglycinate with my meal in the afternoon . i also take a scoop of whey protein powder from grass fed cows which has 750 mg. of lactoferrin in it .. i have been a vegan for 30 years so the whey is the only animal product i consume .. i have a green drink made from fresh veggies and later in the day i have a scoop of beet and barley green drink . i have been trying to exercise a little riding my bike and swimming . i naturally feel best in the water .. i am 5 ft. seven and now only weigh 130 pounds . i am a semiretired electrical contractor , and wearing many other hats including operating a Christian radio station but am so ignorant about how all these different parts of the blood work . i feel like i am in second grade again ... you have been through some tough times with your health .. it sounds so easy just take a couple pills a day and it will all be fine but it sounds like i have a rocky road ahead till my blood actually stabilizes .. i will definitely inquire about the AIHA on monday .........before i was diagnosed with cll this spring the only time i had been to the doctor in over 20 years was to have 3 stitches put in my finger . so i feel really blessed in spite of my current condition . even now i have lots of people praying for my wife and i , and you folks have been so helpful . thank you once again . james
Hi James,
Your doctor should have been giving you more guidance on identifying the cause of your low RBC and haemoglobin counts. Given your long term vegan diet, you may also be low on vitamin B12. Your GP should have arranged a fasting iron studies blood test, which checks, iron, ferritin, B12 and folate. It's standard to supplement iron and B12 when vegan, because the best sources of these by far are red meat.
You can also still be vitamin B12 deficient despite adequate diet/supplement intake if you have trouble absorbing it. That can be due to the lack of intrinsic factor being produced in your stomach, which aids B12 absorption in the small intestine. If increasing your dose of B12 doesn't work, then you'll need regular B12 injections.
CLL caused anaemic can be due to one or more of:-
- Enlarged spleen, filtering out red blood cells prematurely
- Bone marrow infiltration, reducing production capacity
- AIHA as previously covered
Dietary changes take a while to show an effect. That's because red blood cells normally have a lifetime of around 100 days, so it takes that long to replace the iron poor ones you have. Your haemoglobin needs to be checked for evidence of improvement much earlier, because if your diet/B12 absorption isn't the cause, you'll need to start treatment for your CLL. The threshold for starting treatment is haemoglobin falling under 100.
Neil
hi Neil , yes being vegan we are always aware of the b12 issue and take supplements for it . like you say that doesn't mean it is getting absorbed . fortunately my b12 level is good ... unfortunately i never gave the iron supplementation a second thought until now .my wife made an appointment with the doctor in 3 weeks with another blood test in 2 weeks so he'll have it when i get there ... we will be able to see how the iron supplementation is working . i won't be expecting much improvement if it takes 100 days to replace the RBCells .... i am sure it is improving some because my arm muscles and my calf muscles used to twitch 24/7 and they have for the most part stopped doing that ... the doctor told me that they have a new intravenous iron supplement given by injection in his office if my oral ones don't work . i'll let you folks know the results . take care , thanks again . james
I needed an IV iron infusion after treatment lifted my RBC count without lifting my haemoglobin. Takes about 2 weeks for a lift in haemoglobin. Don't hesitate to accept the IV infusion if your haemoglobin doesn't work. My haemoglobin was 105 before starting treatment and fell to 78 before RBC transfusions and treatment began to boost it.
Neil
James, Neil gave you a great answer. When someone with cll has hemoglobin as low as you do, as I once did, we usually worry about hemolytic anemia, also known as AIHA (autoimmune hemolytic anemia).
You can ask your doctor if this is your problem, AIHA is easily diagnosed though blood tests like the Coombs test. It’s a condition triggered by our cll where our body mistakes our own red blood cells as invaders and destroys them. This causes anemia due to a lack of hemoglobin.
If you have AIHA, the strategy is usually to control it and then treat your cll. There are many ways to treat AIHA and spleen removal, used more commonly in the past, is now more of a last resort.
It might not be AIHA. I would encourage you to have your doctor explain to you why your hemoglobin is so low and what treatment options he offers. If he starts with splenectomy as an option, I would at least get a second opinion.
I had AIHA and had it treated and am now on calquence doing fine, hemoglobin back over 15. Good luck. Ask your doctor more questions is my advice.
hi Jeff , yes Neils reply was much appreciated as well as yours . please read my response to him it gives a couple of details as to where i am at in this CLL process .. .. i am a 2 finger typer with anemia so it takes me awhile to type ... yes i have another appointment in a couple of weeks and i will ask him about the AIHA . thanks for mentioning it . it is also encouraging to actually know that you had AIHA and were treated for it . so far my doctor has prescribed iron supplements . my iron level last month was 37 ..it should be over 70 ... i was wondering if my RBC count is low because my iron is low or perhaps my iron is low because i don't have many RBC .. the info i read says that the spleen recycles the iron from the dead RBC helping the body to maintain our iron levels . i definitely need more blood tests to sort this out .. neither doctor has recommended a spleen removal ...i read that it helped some people so i was considering it ----- very glad to know that you recovered from AIHA and are doing so well on the calquence .. how did they treat your AIHA ? thanks for helping so many of us . keep looking up. james
James, my AIHA was treated with steroids and rituxumab.
When someone has low hemoglobin like you and cll, AIHA is what I think most cll doctors would automatically suspect. I would have to think your doctor checked for it. Maybe it’s something else, I don’t know.
If it is AIHA and either your doctor did not test for it or did not explain to you that you have it, I would consider a second opinion. We have had members on here find out later they had AIHA where for whatever reason their doctor knew and did not tell them.
Given your doctor hasn’t mentioned it to you it very well might be something else. If you have access to a nurse or anyone with your records you can ask if they did Coombs test to rule out AIHA and if not, why not?
thank you Jeff for the info ..please see my response to Neil again and let me know what you think of my iron supplementations . i have not heard of the Coombs test so i assume i have not had it .. i am not accustomed to going to the doctor at all so i don't ask the right questions .. i obviously have to get used to being more engaged with the doctors . i am very thankful for all of you folks ... this is a new phase of my life and the covid virus has made it even more complicated . i will check with the doctor on monday . have a safe week end . james
James, first of all I want to reiterate that you might not have AIHA at all. This can’t be diagnosed over the Internet and certainly not by me. I know more about AIHA than the average bear because I had it, but I am not a health care professional.
If you have had a Coombs test it might appear in your lab work as DAT, standing for direct antiglobulin test. A positive DAT correlates with AIHA. Bilirubin is typically elevated with AIHA and the eyes or skin can look yellow. I didn’t know how yellow I looked until friends noticed it and commented.
Another test you might find in your recent labs is for lactate dehydrogenase (ldh), which is typically elevated with AIHA. Haptoglobin is yet another test used to confirm AIHA.
AIHA is so connected with low hemoglobin that I have to believe your doctor ran these tests, which might suggest something other than AIHA since your doctor did not bring it up. There are other reasons for low hemoglobin than AIHA.
If you have access to your labs look for a DAT test, your bilirubin, LDH, hemoglobin and haptoglobin. If these are reported as normal, particularly the DAT test, then I would guess there is something else going on. Most labs would at least include bilirubin. And many of us with Cll routinely have our LDH tested.
Here is an article that might help. I only bring up the AIHA angle because that is what caused my low hemoglobin and it is a very easy disorder to test for and rule out. Good luck.
cllsociety.org/2017/04/auto...
hi Jeff , i finally got more serious about looking at my blood test . the only one i saw on your list was my first test in may in showed the bilirubin and thankfully that was one was in the mid range . one third of my blood work levels are out of range either high or low ....... i am definitely going to be asking the doctor more of these type of questions and writing the answers down for future reference . thanks once again for your time and the first hand knowledge . james
Update from my Appointment
8 and 1/2 months on ibrutinib , great news
I'm trying to find out more about the connection of the Spleen and CLL. 
Falling apart mentally & physically, hate this disease, no energy..can't do the things I use to do
Nulasta and a large Spleen
