Are you living a normal life? Are you happy? Do you live in fear of what will be the next deadly disease?
CLL questions: Are you living a normal life? Are... - CLL Support
CLL questions
62 Replies
•
More or less, more or less, no.
I worry for about 6 months when first diagnosed with CLL but quickly learned life isn't worth wasting. I was active before my diagnosis and stumbled upon it during my annual fitness test. 4 years later I needed treatment, that's when I started worrying again. Luckily I was put into a Frontline trial of Venetoclax and obinutuzumab and quickly went back to my normal active lifestyle. I was clear almost instantly and stopped treatment at 9 months (I am in the short arm of the study). While I am now tested every 3 months and recently went from UMRD to just MRD, I still don't worry about it. I've pushed CLL out of my mind except for that quarterly visit. I was given a new lease on life and I can't waste time worrying about CLL. 16 years ago I watched my Dad succumb to the disease when chemo was the only option and it didn't work and he quickly passed. Today's treatments are so much better and getting better all the time.
Great attitude
I hope it’s relapse is very slow!!!
I’m at 13 of 24 months on V + O for RR CLL and struggling with side effects so weighing pros and cons of stopping early.
Since you got the “short arm” just wondering
How long off the V + O before you became mrd positive?
Was it by blood or bone marrow?
Was it mrd 4 or 5 or 6?
Any negative markers?
Thx
Skipro
Thx
I am living a very normal life. Yes, I think about the what ifs with CLL but I choose not to waste my time worrying about it. Who knows what tomorrow brings for anyone. Don't waste the good times to be had worrying about what if. All I know is I feel great right now and for that I am thankful.
Lucky you living your CLL live without worry! I try to do all the “ Normal things “. Like travelling, every time I end up in hospital with Pneumonia, Hard to stay positive sometimes when you feel so ill!
Awe I hear and understand those tough feelings
as hard as I try to be positive and do things outdoors, I still feel concerned almost every day about my immune suppression as I’m on my second treatment, the first was FCR in 2018 and now I’m on V plus O.
Struggle with a lot of muscle and joint pain that got significantly worse on treatment, fatigue, intermittent, nausea, and I’ve had a bunch of infections over the past eight years.
The first was recurrent hand infections, which led me to give up my operating room privileges, but these stopped after I started IgG and got my first round of chemo in 2018
in 2019 end of year I nearly died of a fungal infection that got up into my mastoid air cell
Since starting chemo I have had number 13 malignant Skin cancers, including melanomas So I have to avoid sun exposure
I had nonstop sinus infections for five years before my doctor started me on IgG infusions and twice daily saline, nasal and sinus rinses.
I decided not to wear a mask a couple of times visiting family and both times caught some thing. The first was the virus for the common cold. that significantly aggravated side effect symptoms for about six weeks and then I caught another one a couple weeks later and after a month on antibiotic, which seem to help but it’s coming back again.
So it’s becoming harder and harder to stay positive positive but I do my best to be grateful for and function within the limits of my physical right now.
For me, serving others in various capacities, and being outdoors in the mountains, bring the most peace and comfort and help me forget about all the challenges.
Even with that I still don’t feel great.
Just hoping and praying that when I get off the Ven things will get a little better.
So I will post my picture from skiing the other day. This really lifted my spirits.
I am truly grateful I can Out there and do this
Ski pro
Color
Look at all the positives. CLL can be controlled and most of us will not die tomorrow. If we do it is likely to be ‘with it’ rather than ‘of it’ Be thankful that you don’t live in Ukraine or Gaza. Enjoy every day to the max!
Your questions are quite common at this time. You are still wrapping your head around a lot of sudden changes that are very personal to you.
This takes time, the rediscovery that yes, you do have a cancer at odd times will become less intense.
There are so many aspects to this new lifestyle that keep popping up every day, common things you never had a second thought about, will suddenly seem most vividly important.
The folks that seem quite casual about it, have in many cases, had years of already living it. Don't put that expectation on yourself. Do you have a good friend or family member you can have a weekly cup of coffee or tea with that you can process this with, verbalizing can be a great help.
If it is too much for them, find a therapist, not anything too intense stay away from drugs if you can, if a therapist suggests it, then ask why they think you should do something that drastic.
Mostly, educating yourself about the condition, the treatments and foremost healthy living now will be a much better focus for your emotional health. Also, you'll be preparing yourself for the future if matters decline and you need to make choices.
I think that by that time you'll have passed enough time that you too will respond like some of the people have in this thread. I know I'm much closer, maybe not all the way there yet, but closer.🙂
• in reply toSpark_Plug
Thank you at least you have some compassion for someone new to this. I haven’t had any treatment yet I don’t know what to expect and I am feeling really down and afraid for the first time since I found out 3 months ago.
Sushibruno• in reply to
This is certainly not easy for any of us. We understand what you’re going through. You are newly diagnosed and going through the fears of what “if” wondering what might happen. But might never happen. I took this diagnosis like a ton of bricks falling on me knocking me down for months and didn’t know how to get back up. I went through the worst emotional rollercoaster I’ve ever experienced and it was very hard to overcome. Today I still struggle, I think we will always have some level worry when it comes to dealing with cancer. You will see that it will get better with time. You will learn to accept it and move on, even if your fears are still there. The treatments today are much much better than they were 10 years ago. You’re in watch and wait and it’s possible to stay like this for years. I still struggle mentally (still cry) but far less then the beginning.
• in reply toSushibruno
Thank you! I will be going into a trial soon because of 17p deletion
Sushibruno• in reply to
Don’t be afraid of the 17p deletion. Today’s therapies are a game changer. People with these markers do very very well. It’s not like it used to be. The landscape of this disease is advancing so much they can’t keep up. You will do well. Make sure you have a cll expert that specializes in this specific disease. Keep posting everything you feel down or are looking for information. There are allot of smart people here that are happy to help. We are all in this together. We are family here🤗.
👍😀
Jooby59• in reply to
I have 17p deletion. I am on the Nurix trial and it is working wonders. Awful things happen to people all the time and having this disease is not one of the worst! Wishing you all the best. x
Roller coaster is a word that often comes to my mind when it comes to CLL.
It has certainly been a roller coaster of emotions, physical symptoms, treatment, side effects, and gratitude for those treatments that are keeping me alive and at least partially functional and able to find some joy in life.
I absolutely agree with you skipro. Keep doing what makes you 😊 happy.
Spark_Plug• in reply to
You will find too that if you fill out your bio with your current diagnosis, and markers or post a concerning lab results the forum will be more effective at answering your questions. Do be careful to crop or remove any personal identifiable information before posting it up. The WWW is too big to trust. Lock posts, that is, restrict posts to community that way the whole internet cannot see your information.
Spark Plug--beautifully said!
I was on W & W for 23 years and never spent a day worrying about it. I don’t get those who call it watch & worry - the only way to deal with it is to get on with life and no, I never worry about some other pandemic or disease coming. Life is good. As far as I know, much better than the alternative😀.
• in reply toPaulhonda
Good fir you never worrying about it!
If you lock this post, you may get more and more expansive answers...
But 95% yes, 95% yes, no - why worry about another cancer when you already have an incurable one - you got all the worst news already. I actually find it's taken the "what if" worry away.
sort of ‘new’ normal ( whatever that means) mostly happy because I’m not unhappy. I don’t fear the next big thing - they are all here already.
My first 3 months I was in shock. My Dad & his twin had it so I didn't know it could be hereditary. They lived long lives & my hematologist said enjoy ur life. I was so grateful for that advice. I relaxed, felt fine & enjoyed my life. 12 years on W&W then after short chemo treatment, I am in my 6 th year of remission! 18 years with CLL. 💕
I hope you’re well .
It’s been a major change. Worries about health and mortality took a couple of years to come into balance. Illness and treatment side effects are a low level strain that tends to be a grind. Social and professional impact of immunocompromise and related travel restrictions have been significant.
That having been said, we are blessed with the availability and relative ease of new treatments - this would have been far harder ten years ago. COVID has made a lot of the precautions less outlandish-seeming to others. And being forced to slow down closes some doors but opens others.
I’m cautious about the “next thing”… but that’s just managing risk, not worrying overmuch about something I don’t control.
“Do what you can, with what you have, right now” gets you through most things. CLL too.
I have a colonoscopy, a genetic screening, a trip to NIH for testing, an endoscopy, a visit to primary care physician, and two appointments with my therapist in next three weeks. Today, I am skiing with my kid in the sunshine in California. CLL is a roller coaster. Good days and absolute shit days. Getting used to my new reality is very tough.
What's 'normal'? Happy? I think I have a cheerie disposition which can be blimmin exhausting! Do I live in fear? Not really. Something has to get you in the end but you never know what's around the corner. With CLL I'm more closely monitored than 'normal' folk and I know skin and respiratory issues need early intervention.
I ride a motorbike. I'm more worried about the general decline in driving standards. At the end of the day, its only me who can look out for me!
Good luck in your CLL journey. Keep on the ball and you'll be fine. And if you have any problems ask the good people on CLL Support/Healthunlocked 👍
Pete
Fairly (I did get very cross with someone I regularly give a lift to a group we go to - who used this lift to go to the doctor with an infection saying - while she sat next to me, unmasked, in the car waving a used tissue around, that she would sit away from people at the group for fear of passing on this infection. I would have driven her to the doctor anyway - though she does drive - but, given some warning I could have asked the covid question, masked up and opened the car windows - as it happens all was well). Mostly, any not is down to me not cll. I did get very scared and worried about the covid thing but try not to worry about a future which has always been unknown.
All of that said, it took me a few months to move on from the "I'm going to die!" to "I always was". I was diagnosed nearly seven years ago now, still on watch and wait. Still surprised that people think I'm an old lady (69) when I know I'm still young...
Keep on keeping on - and be kind to yourself. Regards, Clare
I worry about Europe and the Anglosphere being destroyed, more than my health.
I live a full and active life, diagnosed stage 4 3 yrs ago , straight to treatment. I am on daily Acalabeutinib and monthly bloods with IVIG top ups now and again. I am 60 and a full time dad to my 6 and 4 year olds. I live and do everything I dis before CLL and Covid. Life is for living to the max.
Any side effects from the Acala?
Don't think so.... did with Ibrutinib , thus moved to Acalabeutinib.
Normal life apart from wearing a mask among crowds. As happy as ever. Probably more 🙂. No fear. I don't see the point in worrying about a possible deadly disease in the future. One could have been worrying about one all his life, because death is a certainty and nobody dies healthy. All of life is just a slow journey towards that point. So let's enjoy it while we can.
I’ve been W&W for three years. When I was first diagnosed, I was a wreck for several months. Now that I’ve had time to educate myself and digest the news, it does not have the same hold on me.I will say when my appointment with the specialist is around the corner, I do tend to be more anxious and start bracing myself for bad news. Honestly, I feel that way whenever I go to the doctor. My brother (68)has CLL and is in treatment plays polo 4x week and that is super encouraging! When I’m able to spend more time outdoors- cycling, walking, hiking, etc. I tend to worry much less. I think it’s knowing that I’m taking care of myself that eases my anxiety. Too much time in your own head is dangerous. I wish you peace. X
• in reply toBikram21
Yes getting outdoors is vey helpful to me also! Staying out of my head and on to other things!
I have had CLL for 12 years, and coped well. Just recently though I have had C Difficile 3 times, and seems its due to my lowered immune system, so life for me over this devastating illness has not been good.
I was diagnosed in 2020 as stage 4, went straight into Chemo which knocked my socks off, had a respite of 18 months without disease then again stage 4 and back into treatment. The side effects of all the treatments have sucked, and my neutrophils, IgA, IgM have remained in a funk for the last few years leading to me catching any bugs going around including Covid, RSV, Shingles and a heap of colds and flu’s. I have always been a very positive person but sometimes it really does your head in waiting for the axe to fall again, I am currently chatting with the team counsellor in working through my feelings of worthlessness. At the time of diagnosis I owned my own business employing 6 staff and working myself 60 hours a week. It isn’t easy but I hope you will find your new normal and be able to successfully adapt to it.
The shock of having CLL is pretty bad!!! Some sleepless night, I am a private person so I didn't share my CLL concerns; beside I didn't want some one always asking me how are you feeling. But if sharing works for you by all means use it.
After the shock, work on getting you some kind of normalcy.
I would say get up in the morning and have a copy of coffee or tea ..and drink it slow and really enjoy it; the little things will seem more important. Get you a good medical team, educate yourself the best you can on CLL. Stay ahead of any other illness sinus, cold, flu, and any infections. When and if treatment starts get you a vitamin for your fingernails and hair, maybe a little vitamin B for the tiredness, and take care of you skin. Try not to dwell on it. Keep this Group in mind, there is a lot of great information here. Good people who been down that road, Sure helped me!! Best Wishes!!!
• in reply toAshlar677
Thank you
I was dx last year and I am on Watch and wait. Was very stressed and now try to cope with the situation. We never know what tomorrow will be. I took my car yesterday and heard a strange noise. The garagist told me that if I had driven on the highway I would for sure have had an fatal accident😱 due to a big problem with tyres. Today I try to live my life with CLL. I am also happy to meet regularly a psychologist that is really good.
I read last night about the new strain of Monkey Pox. For a minute or so my mind went there, to the movie “Outbreak”, to March 2020 (COVID) to all the other diseases out there. I could catch one of them and die. I could also get hit by that proverbial Mac Truck that is always coming around the curve. We are all going to die at some point. Of something.
When I was first diagnosed, I worried all the time, pictured myself hooked up to IV’s, losing all my hair, being sick from chemo etc. Then I learned more, lived with it a while and then realized this is just a part of the life I have been given. We all have something in our lives even the folks who appear perfect on the outside. To directly answer your question, I have good days and bad days. The CLL is under control with Ibrutinib and I get IVIG every 6 weeks. On my good days I do anything I want (within reason) and on the bad days I do only what I have to do. But aren’t most of us like that anyway, sick or not? We are retired. We travel, domestically, I do crafts, work in my church and cook meals for my hubby and myself and other people who need help during sickness or bereavement. We see friends and go to the normal round of doctors’ appointments. We live life. Would love to travel internationally like we did before I got sick, but retirement, fixed income, COVID, etc does limit one’s ability to do international travel! I have items on my bucket list that I know I will never get to, but that is ok.
You will get past this initial stage and learn to do what you want to and can do. As time goes by, you will wake up one morning and your CLL will NOT be the first thing you think about? Hope this time comes for you soon. Will be remembering and say a prayer for you.
Becky USA
NewdawnAdministrator
Hi crablegs,
I’ll admit that when I first read your post I wondered if it was an academic type post intended to elicit debate and discussion. However, I now see it’s probably induced by fear and anxiety about your condition and importantly, the unknown. You are recently diagnosed and your fears are perfectly understandable. The unpredictability and diversity of CLL makes it difficult to know what our individual ‘risk bucket’ is because it’s so heterogeneous. Being 17p, you’ve probably read of more aggressive disease and outcomes and this compounds your fears. However, recent treatments have ploughed through the previous difficulties associated with these deletions and you have reason to be optimistic. You’re going into a trial soon I see and this is a huge benefit.
Your post probably comes across as more provocative than you intended because in your early diagnosed state, it’s reassurance and understanding you need. Psychologically you’ve had little time to process what this means and your mind has plunged you into emotional catastrophe.
Truth is CLL can change how we view our world. I’ll readily admit it’s sucked some of the joy out of mine and I’m nearly 12 yrs into the journey. I was only 54 at diagnosis and whilst now successfully treated, there have been some tough times and whilst CLL hasn’t always been the culprit, it’s certainly always been in the background compounding issues and making other treatments difficult.
I hope your treatment goes well and that your world starts to settle soon. My advice would be to make your subsequent post headings perhaps more soft and to reflect the vulnerability you feel. Not everyone is able to shrug off this diagnosis and we are all at different places and stages.
Take care, this can be treated and your life can find more peace.
Newdawn
I was absolutely terrified when first diagnosed. Fortunately, a wonderful Haematologist and this outstanding website have calmed me down. Life goes on and I am enjoying it without thinking about CLL except when I have to have bloodwork. That too, passes after a couple of days. Make the most of every day!
Everyone’s CLL journey is different. I am very lucky in that I was diagnosed in 2017 and so far I am asymptomatic and have not needed treatment. On that basis my life is pretty much 100% normal for someone of my age. We travel, eat out , go to the theatre and I can’t remember the last time I wore a mask. We also see our young grandchildren very regularly. Ive had COVID twice without major issue . I take every vaccination that’s on offer and again am fortunate to have not had any adverse effects. I do appreciate that others experience is much more challenging but many of us CLL’ers lead very normal lives. Treatment is massively better than only a few years ago so I remain optimistic that when the time comes there will be even better treatment options out there. I am an optimist by nature and I try to only worry about the things that I can control, worrying about all the other stuff won’t help ! Good luck with your CLL journey. Keith
Crab legs, I was also recently diagnosed (Dec 2023), so I understand a bit about what you may be feeling. I have calmed down considerably since Dec. What has helped me is learning as much as possible about this disease, this HealthUnlocked forum, watching webinars from the CLL Society, and time. One thing I've learned is that there is no 1 CLL that we all have. It is a different disease for each of us. Those with poorer markers would likely respond to your questions quite differently than those with more favorable markers. I don't have much wisdom to share since I'm at a similar place in the journey, but I wanted you to know that you aren't alone in your fears.
Are you living a normal life?
Yes (Dx'd 2015 .... Cmplted a year of O&V treatment on 12/20)
Are you happy?
Mostly Yes
Do you live in fear of what will be the next deadly disease?
Nope
Crablegs, I might have had an atypical reaction then I was diagnosed. There’s been a lot of cancer in my family and I had already beaten prostate and kidney cancer. So my reaction was more ‘ugh, I have to do this again!’ And ‘time to kick another cancer’s butt’. The fatigue has been somewhat of a challenge at times. But I’m still here, listening to the birds in the morning and looking at the blades of grass not the roots. Am I happy? Somewhat - there are other health challenges not CLL related. Am I scared? Not at all. I’m doing what I can for my CLL. I’ve lived longer than either of my parents (both of whom had cancer). I guess I look at it as I’m going to keep moving forward as best as I can, one step at a time. FYI, I was diagnosed 6 years ago, on Acalabrutinib for 3. Have 11q deletion. Just keep going! while there may not be a cure for CLL (yet) you have CLL, it doesn’t have you!
Ed
Hello Crablegs
I panicked for one day after first being diagnosed. I am happy to have CLL when I consider all the other things I could have. Every time I see CLL doctor, the first thing they ask me is am I in any pain, I say no. CLL has placed limits on my breathing and arthritis puts limits on my movement, but that is life. Not worried about the next deadly disease. Everyone seems to be in a health panic every few weeks now.
Hi Crablegs-
Welcome to our supportive community. Being newly diagnosed - it is understandable that you have concerns and questions. We have all been there. While CLL/SLL is the most common type of adult leukemia, most of us had never heard of it before we were diagnosed. We hear "cancer" leukemia" "lymphoma" and we envision bald children, chemo wasting, constant vomiting during treatment, and death - all the stereotypical ideas of cancer.
I think it is so important to educate yourself on this disease - because it does not play out like other cancers (the staging etc.). In my opinion, the more you know, the less anxious you will be. Knowledge also helps you know how to ask questions of your CLL Specialist (important to be with a specialist - not just a general hematologist/oncologist) and to better understand what they tell you. Know your markers (13g, 11q, 17p, mutated/unmutated, and others - hang around and you will learn), know the current treatments and sources of accurate, current information (CLLSociety.org), and participate on this forum and in a CLL Society Support Group if you are able (they are online and in many different time zones).
I submerged myself in learning about this disease and then thought I would step back and not be so involved in "cancer" but I needed treatment 22 months after diagnosis so I was glad I didn't wait to educate myself. It takes a while for all the terminology and acronyms to sink in. When you are feeling poorly, and if you have no care partner, you don't want to be scrambling to understand treatments and potential side effects in the 11th hour, so best to "front load" your knowledge, and then you can step back a little until time to treat.
It sounds like you might be starting treatment soon - so that can be a little more jolting if you have not had the lead time to educate yourself.
For myself - I have adapted to being more careful since I have a compromised immune system. I have other more pressing health issues (degenerative spine disease and chronic pain) that take up more mind share and life adjustments than the CLL/SLL. These other conditions have altered my pace of life and what I can be involved in much more than CLL/SLL.
Life changes for us all as we age and we have to accommodate those changes and still set goals within our new limitations and resources. There is still joy to be had! We are all here for you. Wishing you all the best.
This week I'm at Center Parcs Longleat. Yesterday I did the Arial Adventure, hung on a cable guideway and sent off into the treetops, assorted rope and wobbly plank bridges, short zip lines between trees, a step over the 1m gap between platforms with a 10m drop. Finished with a 200 metre zip line across the lake. Then swimming in the evening, a swirl round the rapids, 3 flumes. About to go back for another swim, hoping the Tornado and Cyclone (more extreme flume rides with inflatable rafts) are running this afternoon.
A week ago I was panicking, found a report that said "Atypical CLL" should be rich in Kappa free light chain and restricted Lambda. High Lambda indicates 99% likely MCL, not CLL. My Lambda before V+O last year was over 200 and Kappa only slightly elevated over 20. Had I been miss Dx? Was the V+O treatment wrong? Then looked at some of my test results that said possible MZL. Checked the BSH guides and those say CD23 is positive for CLL but negative for MCL and MZL. I am CD23 positive.
ncbi.nlm.nih.gov/pmc/articl...
The odd thing is the Lambda responded just as dramatically as the ALC to the V+O and may by now be below normal range while Kappa has seen a much slower reduced response.
Crablegs, YES! YES! And NOPE! I saw a sign yesterday. It said, "Turn Off the News and Go Garden! I need to make a sign like that. 😊Sandra
Happy to say that I am living a normal life. I go everywhere and do everything that I did before CLL … and now with less fear. Ironically, having CLL has made me fear fewer things. Kind of like … what doesn’t kill you makes you stronger. That’s how I feel. I certainly don’t fear the next disease, and I no longer have any fear of Covid. It’s only a mild cold for me. I am more able to live in the moment and happier than ever before in my life. I wish you well.
I consider myself a happy person. I am satisfied with all the precautions that I follow daily, staying current with vaccines and the latest studies. I have redefined what is normal for me and have adjusted nicely to those parameters.
Hi.Unfortunately, from a very early point in my W&W I was hit with fatigue and every time I have been ill, the fatigue has stayed worse. Therefore, my 3 to 4 times week to the gym stopped immediately. I apear to be very susceptible catching infections so don't socialise much outside of my bubble.
That's the rough side, but I don't let it get to me, I do what I can when I can. I surround myself with my family and use electronic media to socialise.
Re worrying please try not too, as we don't know what's next. Nothing to do with my CLL, now got a lymphoma and undergoing treatment. Who saw that coming?
We all need to try to live for today within our side effects and being as safe as possible.
Re your side effects, try to live with them the treatment is your possible remission. However, you are the one living through them.
Hope this helps.
• in reply toAbernathy
Thank you and prayers
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