Latest Blood Work

[Estate1]

Three weeks since first B&R. —Lymphocytes still dropping and down under low normal to .8

WBC now under low normal to 3.5

[Seameshell]

My lymphocytes are high . So much to understand

[AussieNeil Partner Administrator in reply to Seameshell]

How high? Here's a post on how high they can go: healthunlocked.com/cllsuppo...

As Estate1 posted, some treatments can drop them dramatically - and that's generally the first time when a high count can be a problem. There's a risk of Tumour Lysis Syndrome if protective medication isn't given to protect the kidneys from the chemicals released by the dying CLL cells.

[Joffre1 in reply to AussieNeil]

Hi Neill

Looking back at your post in reply to Seameshell and your comment re Risk of Tumour Lysis Syndrome if protective medication is not given to protect the kidneys ?

Can of offer anymore advice as to what I should ask my treating doctor as I start BR treatment next week because of falling eFgr reading.

Thanks

Joffre1

[MorganNL in reply to Joffre1]

Hello Joffre1,

I finished 6 months of BR in Sept 2018. I believe the concern for Tumor Lysis Syndrome is greatest during the first days of treatments when the swollen lymph nodes are being reduced in size rapidly. The debris is filtered through the kidneys, so if you have lower than normal kidney function (eGFR or estimated Glomerular Filtration Rate) then you should certainly speak to the doctor and nurses about your kidney function. I was told it was very very important to have a high fluid intake for that first week......I think I drank about 2-3 litres a day but I have normal kidney function. But drinking lots of fluids might not be recommended if your eGFR is below a certain level or it might be even more important for you to do so.....it all depends on what your eGFR level actually is. So please make sure you talk to them before starting the treatments.

I must say I was amazed at how quickly my enlarged nodes disappeared.....it only took a few days 😲. And I had a wonderful response to the six months of treatments.......nodes and bloodwork all normal afterwards. Here’s hoping the same for you. Best of luck to you during your treatments!!

[AussieNeil Partner Administrator in reply to MorganNL]

Hi Joffre,

Morgan is right that you need to discuss this with your specialist. TLS risk increases with the degree of tumour burden (high lymphocyte count and bulky nodes and spleen increase the risk), how rapidly the treatment tends to kill off CLL cells and the individual's risk of organ damage.

Wishing you good results from your treatment.

Neil

[Joffre1 in reply to AussieNeil]

Thanks again Neill.

I was a bit surprised from my specialist as my ALC numbers are not high had only jumped 69 to 84 in 6 weeks. But the eFgr had dropped from 51 to 44.

Creatinine up from 120 to 136 in that time.

So BR to start next week.

Fatigue and regular night sweats main concern.

Regards

Joffre1

[Joffre1 in reply to MorganNL]

Thanks MorganNL😐

[GMa27]

My WBC went down to 2.5 during my FCR chemo. It was fine. Neulasta shot keeps it from going to low. Remember if u have a fever of 100.4 or above get to a hospital and let your oncologist know. You don't want to get neutropenic or sepsis. Fevers should not be dealt with at home. 💕

[MsLockYourPosts Passed Volunteer]

My lymphocytes dropped during Treatment with Gazyva, and have bounced around, in the three years since, but have never gone back to "in range". My doctor isn't concerned, so I don't think about it. Keep an eye on your neutrophils, hemoglobin and platelets, but be assured that if you know your numbers that your doctor does, also, and is monitoring for anything concerning.

[Big_Dee]

Hello Estate1

Just finished 4th cycle of B+R. Numbers all over the place but close to normal. I am being given Neulasta shots since cycle 2 and seems to be helping. After cycle 3 treatment doctors did blood testing every week after 103+ F fever and hospitalization from cycle 2. I am now back to blood testing every 28 days, so doing good. Sounds like you are doing well and wish you the best.

[Estate1 in reply to Big_Dee]

Happy you’re getting it all under control Dee. I realize now how shifting the sands of CLL are. Numbers constantly moving around as the meds do their job...and we do ours. All the best going forward Dee.