I was diagnosed in Nov 2017, and have been on watch up until my appointment this week. My hematologist has been pushing for treatment but I have been too scared to start acal. Now she is recommending venclexta. I honestly don't know what to do given all the side effects, esp the internal bleeding and cardiac problems. My lymphocytes are high at 330 now (was 15 in Nov 2017), so the time has come to face the music. Any words of encouragement or advice?
Nervous about starting cll treatment - CLL Support
Nervous about starting cll treatment
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spiritualwarrior
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AussieNeilPartnerAdministrator
Welcome to our community!
I hope it helps you to know, that as a member of this community, you are reading about treatment side effects, because that's why many people post - for help on how to manage them! (That's help that you can tap into, by searching for past posts on matters of concern, or posting about them, where you are likely to get a supportive, helpful response within hours of posting. This is a major benefit of your community involvement - you'll be corresponding with people whom you can trust, because they have successfully been through treatment!) Also, those who have little to no side effects have no reason to post! Thankfully, some members do chime in to say that they have little to no side effects from the targeted therapies you've been recommended.
Also, you are already living with the risk of adverse events from your CLL. It sounds like you are in the optimal window for treatment - so you don't want to wait too long to start, as that can make treatment more challenging, at least initially. Your haematologist is pushing you to start treatment, because she considers that the risk of these adverse events, (like bleeds), is likely to get worse unless you start treatment soon.
With respect to bleeding risk, you have only mentioned your high lymphocyte count. It's your platelet count that determines your bleeding risk. The recommended platelet threshold for initiating treatment used to be when they dropped below 100. (Normal range is around 150 to 450.) The latest guidelines allow for deferring treatment if they fall below 100, provided that they are stable. Mine dropped to the low 50s before I began treatment with acalabrutinib (Calquence) , venetoclax (Venclexta) and obinutuzumab (Gazyva). I had some bruising initially, and occasional petechiae throughout treatment, but no bleeds, despite my platelets falling below 30. Low platelets counts can be supported with platelet transfusions, but they are only recommended when counts drop below 10 (or 20 if you have an infection). Just temporarily give up any contact sport while you are in treatment 
Neil
Agree with Neil. Also keep in mind that people tend to post considerably more about bad effects of treatment than the good. I believe in the crude saying, “shit happens so deal with it. “ it’s a tough decision you have that most of us have faced here.
by the time I needed treatment I was so ill that treatment was a relief. Yes there were/are side effects too many, too subtle and all pervasive to mentally collect & describe fully BUT the treatment was effective in my case - so I live to fight another day
Same here... though I wasn't that ill - or I didn't think I was... it was only after chemo and recovering from its effects that I realised quite how exhausted I'd been for ages. Fatigue is a well-known symptom of CLL but I had no idea I had it... I just assumed it was old age.
I started Acala three months ago. I got the usual side effects - mostly under skin bleeds and bruises. After my first month my consultant reduced my dosage to one per day. This stopped the side effects pretty much at once and my last bloods show Acala is working well at the reduced dose. Dosage changes may not be for everyone but in my case it gave me some comfort that there was some way to reduce side effects.
We focus on side effects but that's natural. Acala has a very good record in the percentage of people who tolerate it well for the long run. See how it goes - you may have no problems at all 
Hello spiritualwarrior,As I recall, starting treatment for this disease we tote around can be overwhelming. I've been in remission for 3+ years after Ibrutinib and V and O. When my Dr. Suggested treatment my numbers were not too extreme and I thought I could again delay treatment but my Dr. Said it was time. I trust him and of course in hindsight it was the right decision.
I hope you have found a CLL pro you can trust. If your not sure about the medication I would get answers to help give you peace of mind. This journey is tough enough to walk! Find what gives you peace and keep going.
Best of luck!
This is very normal. We all feel nervous in the beginning. I’ve been on acalabrutinib almost 2 years. I had a few side effects but nothing major and no longer there. You will do fine🙂.
Like Sepsur I was so ill I went straight into treatment, I know it sounds strange but I was relieved to start and get rid of the all consuming exhaustion and lymph glands so large I was wearing a scarf every day.
Good luck
Colette 🤞
Hi there! Much the same for me - I suppose that those of us whose CLL progresses rapidly don't have time to worry about whether or not to start treatment, as we have no choice (5 months between diagnosis and chemo in my case). But it was good to feel that 'something is being done'. And in my case - as in yours - it worked.
Mine was less than a month, but in a strange way it suited me not having to think or research, especially for something I didn’t know anything about. The 10 years between first and second line treatment gave me that time to relax and gain information.
Colette
Hi Colette...
I hope you are feeling well. Like you, I knew nothing about CLL when I got it, and didn't have time to learn much before treatment started. Before that, I thought that 'leukaemia' was just one condition! Well... no.
Thanks in no small part to this site and community, I know far more about it now... in my case, after 12 years it hasn't come back - yet, anyway - but who knows? It's good to be aware of the many new treatments which arre available now, as opposed to back then...
Keep well!
I am doing fine thanks, and you are obviously doing great with only one treatment line in 12 years, I managed about 10. Yes I was so ill I went straight into treatment and I thought chronic was terrible, and not helped by my GP not knowing anything about my diagnosis, he kept talking about smudge cells 🙄
Colette
'Smudge', eh? Sounds like a kid's caroon character!😀
The GP I first spoke to about swollen glands in the neck almost certainly guessed what was the matter - he sent me promptly for a blood test. Unfortunately, as in our surgery you rarely see the same GP twice in a row, the person tasked with giving me the bad news was a much younger and less experienced Dr. He seemed to think I knew what was the matter, but I didn't. Still, he didn't beat about the bush, which suited me fine even if it was a shock.
You were lucky, back in 2007 I was told it was a virus it will get better, then perhaps I had glandular fever, but it will get better, and finally perhaps I had mumps. At that point they did a blood test, but it was obvious that three different doctors hadn’t a clue. I was so ill at that point I just went into treatment, otherwise I might have raised a formal complaint. I think the smudge relates to the appearance of certain cells.
Colette
Here's a photomicrograph of purple stained CLL cells, showing that many have smudged, The slightly smaller, more numerous brown coloured cells are red blood cells.
Neil
Smudge cells are due to the weaker CLL cell walls breaking
Thank you Neil,
They do actually look smudged, and as medical terms go this isn’t scary sounding.
Colette
Having a high percentage of smudge cells present is actually a good prognostic marker. It shows that the CLL cells are weaker than the good B cells.
Percentage of Smudge Cells on Routine Blood Smear Predicts Survival in Chronic Lymphocytic Leukemia
ncbi.nlm.nih.gov/pmc/articl...
Between 1994 and 2002, 108 patients were enrolled onto the study and had archived blood smears available for review; 80% of patients had Rai stage 0 or I disease. The median smudge cell percentage was 28% (range, 1% to 75%). The percentage of smudge cells was lower in CD38+ versus CD38– patients (P = .019) and in Zap70-positive versus Zap70-negative patients (P = .028). Smudge cell percentage as a continuous variable was associated with prolonged survival (P = .042). The 10-year survival rate was 50% for patients with 30% or less smudge cells compared with 80% for patients with more than 30% of smudge cells (P = .015). In multivariate analysis, the percentage of smudge cells was an independent predictor of overall.
Thanks for that... the term does sound comical rather than sinister, and it is clearly appropriate and descriptive. Good to know that having many is a positive prognostic marker, too.
Hi, Colette... Yes, the first GP I saw was an experienced (to judge by age) Indian guy, and I am fairly sure he guessed what was wrong - he certainly must have asked for an appropriate blood test as it was diagnosed quickly. You were unlucky - sorry to hear that.
I was on O+V. I was also very scared, I think it is very natural to feel that way. I was so unwell that I also couldn't wait to start though. The treatment was amazing, it was like a miracle. I felt better after the fist O infusion. There were side effects but nothing made me feel as bad as the CLL symptoms I had. Good luck, it will be the begging of you feeling good again, trust me. You don't realise how unwell you are until you start feeling better.
I had just shy of 5 years on Acalabrutinib. No serious side effects and I am in (partial) remission going on 3 years this October - still holding the CLL in check! Best to you.
prayed for your ease of treatment and healing.
When I started treatment on acalabrutinib I braced myself for side effects, after having them spelt out to me by the specialist nurse. I had none, I never even had headaches. I've been in treatment since Nov 2022 and everything is going very well. I have much more energy, my dog walks are longer and I'm not worried by hills now. I'm sure there are lots like me. I do have other medical problems but they are not related to acalabrutinib treatment, more to being susceptible to infection due to the CLL itself.
Hi - I hope it’s reassuring to tell you I’ve been on Venclyxto for six months (in combination with Ibrutinib) for six months now with minimal side effects. And my blood results have improved across the board. Only you can make the decision I know, but it’s working well for me. I wish you all the best - Chris
I found V & O very easy. I did have low neutrophils a couple of times but otherwise life was completely normal (other than the blood tests and monthly infusions). Do yourself a favour and stick to this forum - the social media CLL site is full of ridiculous exaggeration and misinformation. Good luck.
been on acalabrutinib for nearly 2 years. It works been in remission for over 6 months. Only side effects bruising all over the place go for it!!
I, like you, was diagnosed in 2017. I started treatment (FCR) in 2019. I am now having second line treatment of Rituximab and Venetoclax and complete the 2 year treatment next February (Rituximab was for initial 6 months). I live a full life, the side effects for me have been fatigue and neutropenia. I'm on Filgrastim injections weekly and I see my consultant monthly. I'm lucky. I live in the UK and have an amazing oncology team at my local hospital. I totally trust them and treatment options are always discussed fully and a joint decision made. I have no regrets having either treatments, they have kept my CLL under control and I am positive about the future. The amount of research and trials into new treatments is also a very positive aspect. I know that CLL cannot be cured but it can be managed for most.
Good luck to you in your journey. The forum is fantastic so do use it and hopefully we can help. xx
As Mr.Nike said, Just do it! You'll get better and have no side effects. Visualize that happening.
Hi Spiritualwarrior
First let me say that many on this forum have been or are being treated. Yes, all these treatments have quite a long list of possible side effects, but they are managed. If you have existing conditions then these are taken into account when treatment is prescribed. Personally I am now four months into Venetoclax (Venclyxta) and Rituximab and really have had no side effects whatsoever.
When you have some time, you could add to your bio. Maybe mention a little more information about your CLL, and any other health issues which may be relevant. Also which country you are in.
The reason is that when you ask a question or express concerns, quite a few people will look at your bio, and even previous posts, and be able to give much better advice or suggestions. For example, in your post you express concern about internal bleeding and cardiac problems but are these existing problems, or just concerns raised by the list of possible side effects?
Listen to your haematologist and make sure they are fully aware of other health issues. Good luck with whatever treatment is decided.
poddle2 could have written this reply as I had a similar experience. I just finished V+O 3 weeks ago and am currently cancer free. I had no side effects except for an initial reaction with O that was quickly resolved by reducing my infusion rate. My platelets were down to 70 before they started treatment. I had to have two units of blood during startup of O and we reduced my V from 400 mg a day to 200 twice for a week or two because my anc got to low. Other than that it was clear sailing and my blood stablized in 6 months. I had enlarged lymph nodes everywhere and a golf ball size node in my arm pit. Also enlarged spleen. Those went away in 2-3 weeks. It was amazing! Good luck to you! As others have said it's agood idea to have a specialist in the loop.
I was on watch and wait from 2016 and had a mis start until seeing a specialist. After seeing him we waited about 9 more months before starting V+O. Good luck to you. I'm 75 years old and back playing golf. 🙏
I've been on both (and now am on venclexa a second time). Mild side effects. I did have to ramp up as an inpatient on venclexa. I'm on a bridge to another treatment but for now I feel great. It's natural to feel nervous. I'm nervous about my next and 6th treatment. It's only natural but very highly likely you will feel better very quickly. You'll be fine.
I’ve been on acalabrutinib for just over 3 years - bloods went to normal range very quickly and minimal side effects which I hardly noticed -long may it last! As Aussie Neil so rightly says I don’t post often on this wonderful site because I simply have nothing to report 😊
I’ve been on Calquence since January of this year for SLL starting out taking 2 a day. I had headaches at first, but they went away quickly. I’m now on 1 tablet a day with an occasional painless red splotch on my face that fades in a day or two and I bruise more easily. Other than that I feel back to my old self again and was pronounced in remission. For me, this drug has been a miracle and I don’t mind taking it forever to keep it from coming back. Best of luck and I know you will do well with whatever you decide to take. Jan
I was one year after diagnosis when I started treatment with O and V. My first O infusion was a very serious reaction, but the staff was there and knew what to do quickly and I encountered no problems after that. The V caused a lot of diarrhea, but the fact of the matter is, I had diverticulitis and IBS before I ever had CLL so it stands the reason that that’s the way it would affect me. Was anxious when starting treatment the answer was but I’m glad I did and I am 2 1/2 years into remission. Hopefully I get more time out of it, but with my markers, I don’t expect , long term remission. Best of luck. You will relax once you start treatment.
High lymphocytes only, are generally not an indication to start treatment *for CLL*. Ask your doctor *why* you need treatment now. If it's just because of high lymphocyte count, you probably need a second opinion from a CLL specialist. Other lymphomas (CLL is a type of Non Hodgkins Lymphoma) need treatment at high lymphocyte numbers, but it's not necessarily the case with CLL.
My W&W period ended when my platelets got low (43) and my WBC count hit 140. Been on Calquence 2x daily for a year. Recently dropped off to 1x per day as both numbers are now within normal range. Back on 3 month visit schedule. BTW prior to starting treatment I had a stroke likely caused by the CLL. My blood was so thick with white blood cells that it wouldn’t run to the end of the test tube. Had I known I would have started treatment sooner.
I was diagnosed with CLL in 2016 and was on Watch & Wait for 4 years. In 2019/20 I lost a lot of weight and eventually in 2020 my haematologist advised me it was time to start treatment and recommended Acalabrutinib. Apart from the headaches which I’d been warned about I suffered no ill effects, gradually regained the weight I had lost and I lead a normal life. My main exercise is walking and I volunteer regularly at a National Trust property, Like many with CLL I suffer from fatigue but I manage that quite well. So I encourage you to hesitate no longer in starting treatment.
I've been on Acalabrutinib for over 4 years with very minor side effects. My blood work is normal and I enjoy a healthy life style. When I was first diagnosed with CLL in 2011 my hematologist said that treatments for CLL are "gentle". She was right!
Hello spiritualwarrior
Time to call on that spirit. I was diagnosed in 2017 and have finished B+R and V&O treatments with some side effects, but still here due to great treatments. Blessings.
I was more nervous and worried starting treatment Calquence than I was when I was first being diagnosed with CLL. I have now been taking Calquence for three years and wonder why I ever was worried.
Not everyone gets every side effect. Many go though V+O without any, other than a possible mild reaction to the first dose of Obin. They have to inform you of all the possible side effects so you can give "informed consent" when you sign the consent form.
I would hope that this being your first treatment that this is a combination. Either Venetoclax + Obinutuzumab (V+O) or Venetoclax + Ibrutinib (not approved in US).
In the US V+O can be repeated but not elsewhere, they get Venetoclax + Rituximab. Relapsed patients can also have cBTKi. Acalabrutinib or Zanubrutinib.
UK NICE has approved Venetoclax monotherapy for NHS for use after all other treatments have been used or are inappropriate. When it stops working the next treatment is Allogenic SCT if fit and young enough or a trial.
Hello spiritual warrior. I have just completed V and O and have vivid memories of May 2023 when I realised from the results of the blood tests that I had that I was going to be told it was time to start treatment. I had known since formal diagnosis in 2020 that the trigger would be lymphocytes doubling in six months. I understand how you feel because as with everyone on this forum, I have been there.
I was offered two or three treatments but I realised that VandO was the one my consultant wanted me to go for although he did not actually say so. In his letter to my GP he said his recommendations had included V and O. He did not specify the others. I received a lot of support from my CNS who was always willing to talk things through with me. I am TP53 mutated and in the press I read that Venetoclax had been approved for this.
I was very nervous. I read and reread the treatment booklet. I was anxious about the infusions in case I reacted and nobody noticed. I worried about subsequent side effects. The first day of the first infusion I got very cold and had lower back pain both of which I explained away to myself as resulting from the effective air conditioning and sitting for so long. I was very tired that evening but subsequently I went through the infusions with no issues whatsoever. The tablet ramp up went well. I had no side effects, no nausea but I did become neutropenic and had GCSF infusions on a couple of occasions.
I feel so much better now. Naively I had thought that my increasing WBC was because of infections I had had not realising that it was the other way round. I hadn't realised the effect CLL had been having on me. I had put it down to familial matters, stress etc.
I wish you all the very best.
Thank you to Neil and to all of you who took time to send me thoughtful and detailed replies! I must say that I feel a lot better now that I have so many real-life actual accounts from people like me who have been travelling down this road. Of course, I am not any less scared about treatments because I don't really know how my own body will respond, but I feel like I am not alone in this. Not many people understand this less travelled road....So deep thanks to all of you who took time to send me a reply. I wish I could write back to each of you.
Neil- your post about the platelet count was also very helpful. My platelets are around 180, so technically on the lower end of the scale, but not dangerously low yet. My hematologist is pushing for treatments because my hemoglobin is 86, and she said that once the red blood count falls below 100, I need treatment. Granted, with fewer red blood cells I am feeling more tired, but I am still working full time and somehow managing that along with everything my life entails. I think my anxiety and fear about my condition is what is more exhausting than the red blood count and the CLL All that said, this specialist has been pushing treatment on me for a couple of years now, and each time she does so, I feel like I am going to die if I don't start it right away like she is telling me to. The reality is that I have no swelling, no bumps anywhere, and managed to pull through a bad bout of covid and acute pneumonia for which I was hospitalized last May/June of 2023- things got dicey but my immune system managed to pull me out of that whole mess. So what I wonder about is the red blood cell count...when it has fallen to 86 and there is no swelling, platelets are generally okay on the lower end of normal, is it really time for treatment? That's the question for me having read your post.
Here's the link to our pinned post covering the triggers for starting treatment
healthunlocked.com/cllsuppo...
If your haemoglobin count is under 100, then you do meet the requirement to begin treatment. We didn't have the full information on your blood counts. In fact, you might initially need packed red blood cell transfusions to ensure your body continues to receive sufficient oxygen. (Your blood test results report both how many red blood cells and how much haemoglobin is in your blood. The typical red blood cell count range is around 4.2 to 5.4 for women and 4.7 to 6.1 for men, depending on the testing laboratory, but haemoglobin is the best way to measure oxygen carrying capacity and whether you have anaemia. It's not unusual for your haemoglobin to drop initially when starting treatment, due to the impact of drugs used during treatment, but as treatment clears out your bone marrow and it begins to recover, your haemoglobin improves.)
My haemoglobin had dropped to around 105 when I started treatment and as I said, my platelets were in the low 50s and I didn't need any platelet transfusions. However, I needed a couple of packed red blood cell transfusions in quick succession when my haemoglobin dropped below 80. My haemoglobin is now better than it's been in nearly 20 years - from before I was diagnosed!
You can now appreciate that you have plenty of supportive company on the treatment road. If your haemoglobin is 86, then you really do need to commence treatment very soon to have an easier treatment experience. You don't appreciate how much CLL is having an impact on your health until you start treatment, because of the gradual deterioration it causes. You should soon start to feel more energetic as your anaemia improves.
Neil
Thanks so much, Neil! I really appreciate your replies and guidance!
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