Nervous about starting cll treatment

[spiritualwarrior]

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?

[AussieNeil Partner Administrator]

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

[Awksom in reply to AussieNeil]

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.

[Sepsur]

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

[ScruffyDuck]

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

[NMgal]

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!

[Sushibruno]

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🙂.

[mrsjsmith]

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 🤞

[Poodle2]

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.

[DoriZett]

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.

[PaulaRichmond]

prayed for your ease of treatment and healing.

[Artlover1908]

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.

[TiffUK]

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

[Paulhonda]

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.

[Nucleusman]

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!!

[Floxxy]

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

[LeoPa]

As Mr.Nike said, Just do it! You'll get better and have no side effects. Visualize that happening.

[Mijoed]

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 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.

[Rico49]

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. 🙏

[thompsonellen2]

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.

[Zeus52]

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 😊

[Bobby9toes]

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

[Analeese]

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.

[SofiaDeo]

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.