Just over a year ago my “Abnormal CLL” took off. I lost weight rapidly and my 22 cm spleen hurt. I was glad to be offered V+O and after a bad initial reaction settled into the routine. Then the sinusitis and upper respiratory tract infections set in and the cough…. Fair to say I have endured the year including hospitalisation for neutropenic sepsis with a common cold, Covid and numerous lots of antibiotics etc but I kept going with the finish line in sight. But, 11 days before my last dose of Venetoclax and several trips to the hospital and A&E I was so sick I was admitted for 10 days. Yup, a common cold again and CRP over 200 with inflammation of sinuses. I can’t believe I am so sick with a cold. A week later I can only walk 100 metres without breathlessness. I wanted my grand celebration but just feel sorry for myself. The last 11 days of V were cancelled and I couldn’t even ring the bell, the department was locked when I left at 11 pm at night…. Reading this back actually makes me laugh, so just writing it has been a tonic! Thanks for reading and much love to all on the forum because you have helped me so much x
My CLL, where is the finishing line? - CLL Support
My CLL, where is the finishing line?
Oh my goodness, hope you soo feel better. Take care, rest and get well.
Thank you, Scarborough we’re brilliant btw x
Oh I'm so sorry to hear that, what a disappointing end to treatment! Let's hope that finishing with Venetoclax will help your neutrophils to recover and knock that dastardly infection on the head. I think your recovery has just been postponed and pretty soon you'll be climbing hills again ⛰️
Oh I hope so! Thank you x
Sometimes treatment can really take it out of you. I also suffered from respiratory infections throughout and after my AVO trial. If your immunoglobulin count is very low and you are suffering from infections, you qualify for an immunoglobulin IV, inquire with your oncologist. I hope you can turn the corner on this soon.
Sorry to hear it carolly! I had the worst sinus infection of my life while on Venetoclax. I'd never even had one before. It took three regimens of antibiotics to finally recover. The good news is I did finish my course of treatment and am doing so much better now.
We are entitled to feel sorry for ourselves sometimes. I agree with Otter though. Check on IVIG treatments for low immunoglobulins. It may help keep those nasty infections away. I still get them myself when my numbers go below the threshold.
Wishing you better days ahead!
Same here! Never had sinus problems before, the pain was unbearable. Anyway the good news is my bloods are great now and hopefully once I get back on my feet it will be onwards and upwards!
Hello and sad to hear about your horrific experience.
Do you receive IgG infusions?
Before I started mine, I had low immunoglobulins and a never ending horrific sinus infections for years.
Since starting regular IgG infusions, and twice daily saline sinus rinses, I have NOT had another and I am now 4 months into V +O.
If you aren't already receiving IVIG, I would definitely ask for it.
god bless and good luck
skipro
Interestingly IVIG was not mentioned during my stay this time, I assumed because my neutrophils were consistently at the top end of the normal range.
Hi Carolly, your Immunoglobulin G level can be low, even if your neutrophils are in a normal range. Either a low IgG or a low neutrophil count can make you very vulnerable to infections. You should ask your physician to test both. The neutrophil count is part of the complete blood count (CBC) with differential lab test and normal range is 1.8 to 7.9 K/uL. The test for Immunoglobulin G is an entirely different test that a medical provider may order and it may take 2 to 5 days to get results, depending on the laboratory where it is sent.
If neutrophils are too low and infections occur then Neupogen/filgrastim injections help to stimulate growth of white blood cells. If neutrophils are in normal range, but infections are happening due to a low immunoglobulin G level (600-1600 mg/dL is normal range, usually treated if less than 400 mg/dL with repeated infections), then intravenous IgG monthly or else weekly home subcutaneous IgG help a lot by providing antibodies from pooled donors.
That’s very helpful, thanks
Awe, neutrophils are different than antibodies. Anti/bodies Immunoglobulins are made by B cells which are the cancer cells and both V and O kill both normal and cancerous B cells. You need both to prevent these infections.
You can ask your doc to check your immunoglobulins then push to have them infuse enough IgG to keep your nadir level above 600. It could be a miraculous cure for all your infections and even give you some Covid protection.
God bless
ski pro
Hugs! Take the win and throw yourself a party. Sometimes we need to have a celebration to mark our important milestones.
Oh no, Carolly! I'm so sorry to hear that...❤️as you know we are following a very similar timeline. I stopped V 3 weeks ago...I have had this annoying cold now for about a month, not too sick to need antibiotics or A&E - thanks God for that - but getting my weird mouth infections again, random swellings, redness, pain, just had two weeks of that...never suffered with sinus infections before and it seems it always gets into my sinuses these days...had a blood test today to see what's happening if there is anything they can see. I'm not complaining but it's just unsettling isn't it. Seeing my consultant next week...it's just never ending, right...I'm so sorry to hear about your trials though...when I had neutropenic sepsis, it was the first time since diagnosis when I was actually really scared...it is very traumatic so I do hope you have the right support network around you. Hang in there ❤️❤️❤️stay strong. It will get better and I'm happy you told us what is going on, I know all these messages of support will help 🙏🏻you will feel better soon, you will feel strong again. Petra
Sorry to hear you’re having a rough time too Petra. I’m so grateful for getting my bloods back to “normal” but at the same time my immune system seems to be only just holding up. My haematologist said two months will make all the difference so I’m hopeful this will be the last blip for a while….
Yes, my consultant told me it will need a month or two for my neutrophils to be in a normal range without the GCSF - I really hope so...asked my immunologist if all these infections will be my new normal and he said he "thinks" it will be much better this coming year, that it needs a month after I stop the treatment for things to start getting better...well, I don't know, we just have to see. I'm sure it will be the last blip for you 🙏🏻
Wow that is set of messed up circumstances. So sorry, did you make uMRD???
I don’t think it’s routinely offered where I am but my mid-treatment CT showed normal sized spleen and nodes and my bloods are all in normal range.
Your experience is a perfect example of how far the technology has brought us. But the bottomline for me is that no matter how great the drug is, its administration & dosages will have to be based on my tolerance. The cure can not be more problematic than the disease🤦🏽♀️ Its almost like a magic wand is being waved over us & all that bulky lymph nodes return to normal size & bloodwork normalizes too. To GOD be the Glory🙌🏾
I agree with what other people have said about checking your Immunoglobulin levels. I had repeated infections and hospitalisation on Venetoclax, however, infections became a rarity once I was able to access monthly IgG infusions. I wish you well and hope you start to feel better physically and mentally in the near future.
Maureen UK
I am so sorry that you have been through the ringer. It is no fun being sick, no fun at all. My Doc said, "the point of treatment is for us to feel better". Uh yeah, when does that start?😁I want to seriously acknowledge your victory in completeing O & V treatment. For some of us it is not without side effects that can be both scary and uncomfortable. Thank you sharing with us some of what you have been going through.
My hope and prayer for you, is that your immune system recovers to maximum effeciency as soon as possible.
Pretreatment had you ever had your sinus cavities looked at by a scope at by an ENT Doctor?
John
Thank you for your kind comments. I’d never had any reason to have investigations previously, but they did a CT of head and chest in hospital which showed the degree of inflammation in the sinuses and URT. I’m hoping the breathlessness goes soon x
Goodness, carolly, you have indeed been through the proverbial mill, but you are still in the ring fighting, and managing, by the sounds of it.
You are right about the beneficial effect off, sounding off, it can be cathartic.
I trust your Haematology Team are on to this and you are being well advised and treated.
I wish you all the best, and hope things get better for you.
Ron
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