CLL - Monocytes rising while on treatment

  • 5 replies
  • 22 subscribers
  • 489 views

Hello! I have been on venetoclax and obinutuzamab for my CLL and SLL since January 2023. My labs are all looking good except for my monocytes which keep rising. My oncologist keeps telling me not to worry about it but can't tell me why it is happening. Has anyone else had this happen?

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

    Over my many years of treatments I have had lots of blood tests that made 'no sense' and even my Heamatologist said at times he did not know the real reason for the changes but was never that concerned.

    Where do you stay?....... based on your community name and that you are being seen by an Oncologist suggests that you are not in the UK.

    Let's look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks, Mike!  That is reassuring to hear that your doctor did not always know the reasons for changes in your bloodwork but was not concerned.  As a nurse who formerly worked in oncology, I find myself wanting to know all details and reasons but it doesn't always work that way!

    You're right, I'm not in the UK.  I live in Boulder, CO, USA.  I joined this forum because I find the UK people to be on the whole kinder and calmer in their forums than the Americans.  

    I hope you are at a stable point in your own cancer journey.

  • It could be a very British thing to be kinder and calmer Wink

    Macmillan Cancer Care is a UK wide cancer care and support Charity and has a significant input in all areas of cancer care both in hospital and in the community with the Online Community being just a very small part of the provision.

    On the whole the UK wide approach to cancer care is unified across the 4 devolved nation of the UK (England, Scotland, Ireland and Wales) all coming under the UK National Health Service. There is some private services but this is normally only done to short circuit the diagnosis times with treatment then being done in the NHS.

    On the whole treatments are standard across the nations and even the ability to share patients notes when second opinions are needed. I am up in the Highlands of Scotland but my case was reviewed in a few cancer centres in England before my main treatment was started.

    In the UK blood cancer care is mostly done through Heamatology Units and only going to Oncology if Radiotherapy is required. 

    I am now 7.5 years out from my last treatment (you can see my story in the link near the bottom of my posts) and remain in remission to this day.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Here the approach to cancer is quite individualized, tailored to each person's specific desires, responses to treatments, prognosis, etc.  A friend of mine has the same disease I have and we started out on the same treatment protocol.  We have responded slightly differently to the treatments so hers has been modified.  My father has the same disease as well and he is not on any treatment because he is so far asymptomatic.  So it all varies widely and is very much an ongoing conversation between the patient and the oncologist.  

    I'm glad to hear that you have attained and remain in remission!  Happy news!

    My father's family is from Scotland.  My maiden name is MacKendrick.

  • Yes there are standard treatment protocols across the nations but like you say, these are then tailored to suit the individual hence the ability for cases to be reviews across the nations in cancer centres where there is expertise in individual types of Lymphoma.

    My main centre of excellence is actually in London at St Guys and St Thomas’s.

    Just liked at my Clan Name Book and according to it the surname MacKendrick was first found in Ayrshire and Fife where the intrusive "d" is common as in "Hendry." The earliest records are in the Latin form: "Henricus, dapifer, a witness c. 1183-88, and Henricus (Chen), bishop of Aberdeen, 1282-1328." 

    My ancestry has been traced back to Tole Taillur who was a valet to King Alexander III in the last quarter of the 13th century. There were six landowners who were of sufficient stature to be required to sign the "Ragman Roll" of King Edward in August 1296. Their lands ranged in places across Southern and Central Scotland such as Roxburghshire in the Borders, Edinburgh and Lanark, to as far north as the county of Angus where my line came from …… although  spelling of my surname has changed over the centuries to the one I have now…… I love ancestry Heart eyes

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge