My Dad is on w&w and his last two appointments (every 3 months) have been via the telephone.
Dad has visible bumps (as we prefer to call) one under armpit, one on his neck and one or two on his jaw, which he thinks may be causing him pain in his ear and right side of his head/face (has anyone experienced this please?
For someone with CLL, there's nothing concerning about your Dad's blood test results. I note that there must be an error in the March results, because lymphocytes + neutrophils can't be lower than the total white cell count.
With regard to the presumably swollen nodes, that unfortunately can be part of watch and wait. They can at times become painful, particularly when responding to an infection. Unless a node or nodes continue enlarging, he shouldn't need to have them checked out ahead of his next appointment, when he should raise this with his specialist.
Other members have shared similar experiences. Applying a heat pack can sometimes help.
If his nodes are that enlarged with those blood numbers then probably he has more of an SLL version. In which case the size and number of enlarged nodes is more relevant than the blood numbers as far as I understand. I have similar numbers but no enlarged nodes.
Hi ButterflyRose - my experience has some similarities. I am 52 (in the UK) diagnosed in September 2020 after routine blood tests from suffering a pulmonary embolism in my left lung (blood clot). The clot might be connected to my disease according to one doctor - "sticky blood" from CLL/SLL. No other reason for the clot was provided, e.g. I hadn't been flying.
While my blood counts have been slowly growing, my main symptoms (first noticed 8 months ago) have been slowly growing nodes at the back of neck, in front of the ears and under the jaw. More recently they have grown in my armpits, groin, abdomen and also my spleen has slowly enlarged (18cm at most recent ultrasound). Some of my nodes are up to 10cm in size, though in my body not my head or neck.
Reading this forum makes me realise that that everyone will have a slightly different experience so it could be different for your father but the pain I've had has been in my back (behind the spleen), left side and left lower abdomen. Probably my spleen according to my doctor. The swollen nodes haven't really caused any significant pain.
I am more SLL compared to CLL from my understanding although the treatments seem to be similar.
I have just started my first treatment on O + V which means I have had the first dose of Obinutuzumab (100mg first day / 900 mg second day). In a week I will have the second dose of Obinutuzumab (1000mg in one day); followed by the same a week later. Then I start on Venetoclax.
I suffered mild symptons the first day (aches/pains; headache; hot flushes) but nothing the second day even with the much higher dose. Even the headache disappeared.
My big tip is to drink LOTS OF FLUIDS, primarily water. Your body needs to flush the cancer cells and drugs out. Keep your pee a light yellow colour (no matter how much I drink it is never colourless) and make sure you are urinating frequently as you don't want uric acid building up in your system.
I was apprehensive about starting my first treatment but now I am relieved to be doing something about it rather just watching the nodes getting larger and larger!
(1) My pee has been darker and frothier than usual for the past year - higher Creatinine levels in my blood at around 130-135 (normal levels 62-106). So, I went to see a renal doctor / urologist in March 2021 ago and had an ultrasound on my kidneys. That showed the spleen was enlarged (they didn't specify the size). In my most recent u/s in June 2022 the spleen size was 18cm.
(2) Ultrasound also showed enlarged nodes but the way my haemotologist prefers to check them at them is via PET/CT or CT scan and I've had 2 of those.
The reason I have started treatment is due to pains in my abdomen (probably the spleen) and because the nodes in my head and next have become a bit visible ('bulky') although not painful.
The answer by Neil, above, is absolutely, clinically correct. But I'd like to add a little here. Watch and wait is what has been done now for years; treatment was expensive and often difficult and had its own side effects while not always being 100% effective. Taking into consideration that this still is largely true, I encourage you to stay in VERY close communication with the best specialist you can. I agree with others that it seems your dad has the SLL form of this disease. His numbers may be unremarkable for a long time. But if his lymph nodes and symptoms like fatigue and night sweats or frequent infections become bothersome, know that the newest treatments often help quickly and significantly. There are things that can be done about the cost and side effects can be minimal. Don't hesitate to weigh the choices and treat earlier rather than suffer. My personal belief is that this will be the change we see soon.
His WBC is actually extremely good at 9,700. Normal is 4000 to 9000 (4.0 - 9.0). So his levels are at the very beginning of our illness progression. When I was diagnosed around four and a half years ago, my WBC was 15,600. Now my last reading last week was 68,000 and I'm doing fine. His Lymphocyte reading of 7200 and then 5,300 are also tremendous. Mine in the beginning were 6,750 and then 8,840. My most recent last week was 50,960. What you also want to look at is the percentage that Lymphocytes are of total White Count. The further our illness progresses the greater the percentage Lymphocytes are of total WBC. Your Fathers percent was only around 55% now at his beginning; note that mine is now almost 90% which is not so good. In reality the best way to determine the progression is with a Bone Marrow Biopsy, but they usually don't do that until they think you might be needing treatment soon.
What you also want to know is that the total WBC or Lymphocyte count isn't the most important thing the doctors will look for. While true that a doubling in those numbers in a six month period is considered a red light alarm going off; generally speaking, the rise in the WBC and Lymphocytes isn't the most important thing they look at. They worry about the Red Blood Cell Count and thus also Hemoglobin going down too low. His numbers currently are fairly good. The Hemoglobin number of 13.4 is still in the low normal range. Normal ranges from 13.8 to 17.2. Mine this past week was 13.1. I'm not a doctor, nor am I an expert, but I am a numbers guy. With his WBC and Lymphocytes still being in the very good range, I'd notice a bit the Hemoglobin being in the Low Normal area. Just a thought.
His Platelets are also in the Low Normal range at 157, but alot better at 216. I've seen mine go up and down between readings too, so I wouldn't make a lot about the numbers until you see the next one. Normal range is 150,000 to 450,000 (150 to 450). So yes the Platelet numbers are Low Normal, and over time likely to drop more. The Doctors will be concerned with Platelet Numbers as much as with Hemoglobin (and thus RBC), because Platelets control clotting of blood. If the Platelets get too low there can be internal bleeding issues. I don't think his doctors will be concerned with his current level of Platelets or Hemoglobin.
Finally you want to follow his frequency of infections. You don't have his Immune system test results in the numbers you provided. They appear in reports as IgG, IgA, and IgM. At my last week six month review my CLL Specialist told me that the one they care most about is the IgG.
So RBC and Hemoglobin levels, Platelet levels, and Frequency of Infections are the things you want to follow. It is true that Lymphocyte increases and how much they dominate the total WBC Count are also important, but again the Specialists focus most on the other three things.
Nice of you to be concerned about your Father, and trying to understand his illness. He might also mention being very tired (fatigue), and might at some point mention sweating alot at Night (with this illness they mention Drenching Night Sweats). Those two things are just part of what we live with.
You are wonderful Rose for looking after your Dad the way you are doing. You're probably the age of my Daughter or maybe a good bit younger. I just reached the three quarter century mark in March, and my first child (my Daughter) will be 50 in December.
I've been at this long enough now to understand what is important. The fact that my Specialist is likely number one in the World, and it isn't likely that would be disputed, helps me too to understand what is really important. She is Jennifer Brown at Dana Farber. Professor of Medicine at Harvard and Director of CLL at Harvard's Cancer Center. She has seen my WBC go up and down like a trolley car in the streets of San Francisco, and has stayed calm throughout this journey. Basically I've learned to forget the White Count and watch the Hemoglobin and Platelets. Other than that you want to make sure the infections aren't too frequent. Those are the keys to what is going on.
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