I’ve not posted before, even though I’ve been a member of this exclusive club (that nobody wanted to join) since Nov 2020, ok not that long on W&W really, but time flies when your having fun :/
I guess I took W&W literally, watching and reading all your posts and waiting until I had something that I thought might be worth saying. The last part might not be quite correct, but tomorrow W&W ends for me as I start treatment (V&O), so thought it would be as good a time as any to say hi.
The first thing I’d like to say is thank you all for being there, not only the regular contributors, who’s sound advice and CLL 101 for Dummies, has been truly helpful, but also to everyone who’s ever replied to someone with thoughtful comments, a kind word or humour [Never Forget the Humour]. Even those of you who (like me) have never posted, but only waited in the wings, have been a help to me, just because your there and I know I’m not going through this alone.
Someone on here said that coming to terms with CLL is like going through the stages of grief and I think it’s a good analogy, I’ve been through most of them. Denial, anger, bargaining, depression, acceptance.
Denial: Even up to my third appointment I was sure that the haematologist had got it wrong. I didn’t feel ill, in fact I rarely ever get ill so I can’t have a problem with my immune system. I didn’t really have any symptoms so I couldn’t have CLL, could I?
I guess the Haematologist got it right.
Anger: If I’ve got CLL, why have I got to wait for it to get worse before I’m treated? Can’t they just get rid of it now?
The Haematologists have treated this before and will treat it again, so I guess they know what they are doing. Treatments for CLL are getting better all the time. They got this right too.
Depression: I’ve got CLL, I’m all alone and my life is ruined.
This is where this community really comes to the fore, I’m not alone, life goes on, and I intend to enjoy it.
Acceptance: Ok, I’ve got CLL, so I need to look after myself a bit better, both mentally and physically.
I’ve been pretty lucky with symptoms, mostly just fatigue, swollen lymph nodes and spleen and itchy skin. Otherwise I’ve been ok. I’ve got a positive mindset most of the time, but now and then what if’s get in my head and takes my brain for a quick drive around the block. But I soon get back on my feet again. I stay as healthy as I reasonably can and even stopped smoking (So at least something good has come out of it 🙂
As for Bargaining, it didn’t really affect me, but in it’s place came fear.
Fear for my future and how I will cope with CLL, fear of it getting worse, fear of having to watch and wait with this hanging over me and now even fear of how the treatment will affect me. Well I guess I soon find out 🥴
This is where this community once again helps out. It’s full of real people who are going through the same thing, the same gambit of feelings and emotions as everyone else here. It’s a place where you can ask the questions no matter how silly they seem and someone will have the answer. Where you can express your feelings and everyone understands. So once again, thank you all for being there.
Andy. 61. 🏴
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Based upon what you have written it seems like you have educated yourself on CLL and learned to live with it after a lot of reflection which is an excellent place to be as you start treatment. It is also good that you had almost four years to work through this process. I had several months from diagnosis to treatment and I wasn’t nearly as ready as you are today.
I’m also 61 and I’ve been through two treatments, the most recent of which is V + O (I’m still taking V at the moment since it is my second line treatment) which I began just after Christmas 2022. I feel great and have had absolutely no issues with this treatment and I’m extremely grateful to be living a normal and fulfilling life. It’s been a God send. That is the good news and the reason you should have extreme optimism as you start V + O tomorrow. Here is the bad news, when you get up tomorrow to go to the hospital you are going to feel like you are headed to death row. That is just the reality of how the human fight or flight wiring works. Our emotions take over from reality and it is hard to put them aside but you must. Rest assured the worse part of tomorrow will be having an IV put in and then it will be a lot of sitting around. Bring something to read or watch and get ready for an anticlimactic experience. I know it is easier said than done but try to relax and stay positive! You are going to do just fine. Trust me on this!
The best of luck tomorrow! I’ve been on W&W since 2010 and have many ups and down with the nodes shrinking and growing off and on. I agree with how you felt in all your stages and I can tell you the longer you do W&W the more you cycle back through them each time nodes enlarge or it’s scan time, but it does seem like the cycle doesn’t last quite as long as the first year! I am currently have Cervical node issues and an Ultra Sound noted changes that need to have further evaluation. I go to MD Anderson and they have done a great job monitoring me since 2010. They will probably bump up my March visit to this month which is good as once again I am balancing trying to keep calm awaiting more information. I tend to forget I have SLL until something reminds me, and I am dealing again. In that I am very very fortunate that I have had such a long go on W&W! This is a great site as you said and I know you will get even more support during your treatment! Again-hang tight and good luck!
Hi Andy, best of luck with treatment. If you have any questions there are many very knowledgeable people on this site, some of whom will have experience with your specific treatment.I've found alot of help on here, much more support and information than I ever got from my medical team.
Hi Andy - thanks for posting , and another big shout-out from me to our fabulous administrators and members! We're in this together and it's great to feel the mutual support coming from all over the world.
I had V&O treatment mid 2021-2022 with very few problems, apart from susceptibility to infection - it does feel a bit daunting at first but hopefully all will be straightforward and you'll get used to the frequent hospital trips & needles, especially at the beginning of treatment. And have something fatty to eat with Venetoclax, to stave off nausea.
As Mark says, take plenty to occupy yourself - infusion days can be very long and quite tiring.
Remember we're all here, should you need to post - will look forward to hearing about your journey. May the road rise to meet you.
Monday is an unusual start day for NHS. I'm wondering how they are going manage the V ramp up blood tests prior to each dose increase. Blood test is only valid for a limited time and a Friday blood test for Monday dose increase may be too long. My blood tests were Monday afternoon prescription/consultation Tuesday and dose increase Wednesday.
Glad to meet a fellow CLL’er! I started V&O in March of 2023. I started with the V first and I was closely monitored. Bloodwork several times a week sometimes twice in one day. I felt fine throughout but my bloodwork told a different story so I did end up in the hospital twice for 3-4 days so they could further monitor. I still felt fine. (A little scared as to what was going on) The ramp up was lengthened until my body could tolerate 400mg. Then I started infusions. Long days but no problems at all. From the advice I got here I brought a survival bag with me. Reading material, iPad,a small blanket, cozy socks, snacks (although never needed because the hospital provided them and lunch as well) I had company during treatment. It is long sometimes 8 hours.
I also keep a notebook handy and jotted done anything that seemed in-normal so I could either ask about it or I would have a record of when and how many times things happened. ie constipation, dizzy, nausea, heart racing, bruising. I was able to work my part time job during all of it. And I also had a phone # to call if I felt uneasy about anything and I did use it. The nurses were awesome at answering my questions and calming my fears. It is all new territory so the fear of the unknown is real. Please feel free to contact anyone of us to help you through this or guide you to the right place. V&O is a good treatment. My best, Wendy PS You got this!!!
Thanks for introducing yourself so eloquently and good luck with treatment. You'll do great and you will feel a lot better soon, i.e. your fatigue will go away.
I think most of us have been through the stages of grief. Regarding denial….during my first appointment I was in denial. I thought they mixed up the lab reports. I felt fine. I then asked them to test and rule out….HIV…cat scratch fever…and other things!😂 When confirmed I thought….do I go home and get under my blanket and wait to die? And then I tried to figure out where I got this….was it because I lived in the city for 12 years…..was it because I smoked pot in high school…did my father use chemicals on our back yard…was it because I worked for FedEx for a few years and drove a diesel? Yup…the itty bitty shitty committee took over my brain. We are all in the C. Club together. Kindred spirits! This site has actually been a kind of therapy for me. I have received support and given support. Good luck with things. We are all here for you!!!💜
Thank you Andy. I too have been W&W for 6 years. Began IVIG last summer. I felt like I needed to read and learn from this amazing group. It's taken me a long time to begin responding to others. Your stages of grief explanation is wonderful! I could really relate.
Welcome Andy. I started treatment 4 months ago I don't feel any different to when on watch and wait. You are doing all the right things by staying positive and trying to lead as normal a life as possible.Hope all goes well for you.
Hello, Andy. How beautifully you expressed your emotions. I could feel my own ebb and flow as I read your words. I've been in the initial w&w for just over 2 years. Tomorrow, I see doc again..lab was today. I see my platelets are still trending low. My LDH is climbing as well as my lymph. My white count reflects my RSV vaccine 2 weeks ago. I'm feeling sorry for myself tonight, but have no right. So many are worse off than me. It was good to read your post. It made me feel better.
I wish you all the best with your treatment and hope to see your next post soon. You may wish to lock your post though. You'll get more responses 😊
Hope you’re doing ok. Whenever I have a procedure done, be it at the dentist or having a bone marrow biopsy, I go to one of my favorite places in my mind. I went to school for a month in a little Swiss village in the 90’s. That is one of the places I go and hike the trails and smell the amazing flowers. This helps to distract me. Please let us know how you are doing. Sending you a hug!🦋
Hey Andy... thank you for your post... I hope your first round of treatments went well.. I'm in the CLL club as well - been on Watch and Wait for 6 years now... swollen lymph nodes and other symptoms.. I'm lucky - and thankful that I've been able to wait.. I went thru some of these stages as you did - I went to 3 different doctors when first diagnosed.. denial.. I'm wondering if you can help me - my doctors have been pretty vague about what the trigger is that moves me from watch and wait to treatment.. They look at blood work -"It's not the white count - that is an indicator, but not the trigger.. "So my question - what was the trigger for you? What did the doc say was the reason to move from W&W to treatment for you? This may be too personal a question- and you can reply with none of your business...
Started on six monthly Blood tests, then three monthly, then monthly checking my lymphocyte doubling time. In combination with that a CT which showed six plus enlarged lymph nodes and an enlarged.
Once type of treatment had been discussed and decided on I had a FISH blood test to check for 17p and Tp53 mutations
That’s when my Haematologist pulled the plug.
in the Uk they use what is called the Binet Staging System, which is based on the number of swollen lymph node areas and blood cell counts.
I think in the US the use the Rai Sysrem, but I don’t know a lot about that one.
There is good information on CLLsuport.org. Uk and Bloodcancer.org.uk for the Us try Leukemia & Lymphoma Society @ LLS.org
The good news is, after the first two days of treatment, the lymph nodes which were on my neck (both sides) were about the size of my thumb, have practically disappeared.
Good luck with your W&W, I know it can get you down at times, but I’m sure your Haematologist knows what they are doing.
They want to get the most effectiveness out of the drugs for you as can, as there is only so much that they can safely give you.
Also and new and better drugs are coming down the line.
Andy and Second Wind- I love the way you explained your feelings during W & W. And Second Wind, since I’m pretty new at this, I have the same kinds of questions you do. When my Hematologist saw my first bloodwork at my first appointment with him, he off-handedly mentioned “this shows you could have CLL, but don’t freak out about it. Even if it were, it’s really easy to treat with one pill a day and people are living long, full lives.” At that time I was having thyroid issues and he thought if I had surgery to remove my thyroid, the blood counts would improve and negate the CLL possibility. It’s been about 16 mos. now. I opted to not remove my thyroid. Those numbers are perfect now. The last time I saw him he talked about my CLL, but said he couldn’t actually diagnose it that day because one count was a little lower than some standard. He said we’d have to Watch and Wait. We never talked about symptoms. I got all of that here on this site and a few others. He was concerned my iron was so low. I see him again in April. Or should I get a second opinion elsewhere? Maybe there are no other patients here with CLL. Definitely confused. Thanks for any advise.
Hi Nancy, welcome! I too am newly diagnosed with CLL. Everyone's experience at dx is different but you will.find the people on this site are amazing. There is a wealth of knowledge to be shared. My diagnosis came from my absolute lymph count being elevated for several months. It was slightly above the normal range. My doctor.sent me to the hematologist for a consult. She ordered additional testing including a flow cytometry test. To say I was surprised by the diagnosis is an understatement. There is diagnostic criteria for the diagnosis of CLL which involves a monoclonal b lymphocyte count of greater than 5000 cells for at least three months. There is another condition that is sometimes a precursor condition to CLL called MBL. This condition shows a monoclonal population of B cells that have the same protein markers as CLL from flow cytometry but does not meet the diagnostic criteria of CLL (under 5000 cells). Others on the site may know more, correct me or can add to this. My doctor didnt even mention that I could have MBL even though my ALC was below 5000 cells in total. She went straight for the CLL diagnosis. Im not sure why. I questioned her and she didn't really have a definitive answer. That being said, I feel good, no symptoms other than the alc and wbc being out of range. I would definitely get a second opinion and/or see a CLL specialist. Of you ha ent had a flow cytometry test i would ask for one for confirmation. My concern is your doctor wanting to take out of the thyroid to help blood counts. That seems odd to me but I am not a medical professional. I would begin reading through this site and learning a little more about this.chronic condition. You may want to take little bits at a time as there is a lot. Everyone here is super helpful and the moderators are amazing. My last suggestion is to stay off Dr. Google. Information is outdated and will only scare you. I would also not google life expectancies.as these statistics are outdated and do not take into account newer therapies. If you don't get info here, use reputable sites like CLL society and the Leukemia and Lymphoma society. Take care! We are here for you!
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