The incurable disease CLL, silently creeps into our bodies, and gently starts launching an attack on the bone marrow. Wait and watch says the doctor, we can challenge it, with medications we can treat it. We wait until CLL has full control of the bone marrow and started presenting what the doctors call real symptoms. No worries the treatments will hold the progression, will have it under control in no time. Hope for a peaceful life from here on. Yes CLL is under control now but it opened up pathways for new diseases to invade your body, and new channels for the meds to interfere with your lifestyle by introducing side effects that will control our freedom. More battles to fight, more hospitals to visit, more new doctors to visit, more new treatments to take. Some of the treatments work against each other. The silent disease CLL, though controllable brings along more difficult challenges to fight. I often ask myself, which battle is it that I am fighting. Too weak to handle all of them.
The battles we fight: The incurable disease CLL... - CLL Support
The battles we fight
Thank you for your well wishes, need all the support I can have.
Yes, I am currently under active treatment, that it seems is slowly taking away my laughter, like it is holding me back from enjoying life like I had expected to enjoy, perhaps it is the same for everyone else. I am wondering how others feel about how the treatment is affecting their quality of life, depending on how QoL is defined by each individual person. Thank you Sixtyish👍
Sorry to hear that you are so down. Which treatment are you having if you don’t mind me asking?
I am taking Ibrutinib, 3 tabs.
I think we all feel like this at times, I know I do. Into the third year of shielding alone and watching the rest of the country going back to normal life with no thought or consideration for the immune compromised.
You can always find someone to listen here. Sending you a virtual hug.
I'm so sorry AmCLL. You have described what some of us feel, felt or will feel...CLL is a roller coaster and it can be very challenging when you are going up and down with no end in sight. I hope it gets better soon ❤🙏🏻
Exactly how I always felt, this is one of the reasons I have such intense anxiety. Why, why? Hasn't there been a cure? It's what we all wish for. It's mentally draining, doctors say go and live your life(like it's that easy) I'm sick of feeling like I can't have my life back thanks to this damn disease.
Sushibtuno, please don’t be worried as new targeted therapies are very effective and we have many many success stories. Worry will make matters worse and it’s no good. Trust me you will be fine.
Thank you Lovely67. Im waiting on some test results (women issues) and im very scared. I don't know how to handle anything. It's a battle everyday😥😥. (For all of us) I just want peace.
Stay strong Sushi. Remember you have friends here who support you and are thinking of you.
Though our challenges are tough, we still need to be positive with the thought of tomorrow to be a better day. Keep strong please.
Im sorry for hijacking your post. Thank you. We all fight this cll battle and nobody said it was going to be an easy sailing. Im at the moment worried about some test results i should be getting soon. Im a worrier and a hypochondriac so it makes it allot worse the wait.
No, please Sushibruno do not feel sorry, you are not hijacking my post at all. We are all sharing the same journey though our routes maybe different, we are still part of the same family fighting the same battle. We continue to learn from each other’s experience so please don’t feel sorry but continue to keep on sharing it. Thank you.🤗🤗🤗
Thank you🙂
My best wishes for you and hope you feel well. With new therapies you will be fine.
Hi AmCLL. Personally I have tried put it to the back of my mind and live my life normally. I go to work, social functions, go swimming etc. I have not let it rule my life. Everyone is different how they process things. Yes every 6 months when I have bloods done I have that thought of what if. The support from the people here has been wonderful. I suppose I am stubborn and see what is coming up in life to focus on. There are new medications on the horizons and hopefully they will have less side affects. I wish you well and strength to get past the bump you're going through. My advice is don't bottle up your fears but talk about them to people who understand like the lovely people here. I wish you much strength 😊
Sorry you are feeling down at this time - You are correct , we have this disease within us that is invading …. And there is no quick fix or sure fix … That is the reality ! But!! We can aim for good times and symptom relief and enjoy the good things that we have …. I try not to focus on the disease all the time but to enjoy the small pieces of good times - If it can’t be cured at least it can be managed -
I’ve learned , everyone has his own package - with problems and good things too . We learn to maximize the good and cope with the tough spots be they physical emotional, circumstantial , or other…. We are here for each other when we are overwhelmed by the tough spots … Sometimes just knowing somebody understands and cares gives us the strength to fight back and manage this disease
- We care and hope that you can get back to enjoying the good stuff very soon!!
I'm so sad that you feel like this.I am on watch and wait but my check up this week showed signs of symptoms.
All my resolve that I can carry on as normal is ebbing away.
It all feels rather overwhelming to see this disease on my body.
I am heading towards treatment and I realise I have been in denial at how much this is going to change things.
I'm hoping to come out of this negative, depressing place I'm in and carry on
I hope you can too, good luck.
Hi I have only just found this group and I too am on watch and wait. I dread the day when told I need to go on medication, I feel great most days but then others have no energy to do anything. Just wondered if you feel like that too or do you have any other effects.
The loss of energy is increasing in how often.I used to put it down to being 64 but I'm told now it is the disease at this point.
I'm a very active person, working, cycling, grandchildren!
It all seems to be slipping away from me now.
I'm hoping this feeling will pass because it is so unlike me to feel so low.
Tiredness that doesn't get better with sleep is debilitating, I will adapt once again to my limitations but it's getting harder. Let's hope we have a lot longer to go before treatment, good luck.
I find this cancer difficult to understand and for so long was in denial as it was 10yrs ago I was diagnosed and it must be hard for outsiders to understand it too. I never told my children until recently. I think my lack of energy is down to being anaemic as I have no other symptoms. Perhaps the more active we can be will help, certainly our outlook on life. Today is good, having g spent morning gardening. Who knows how the rest of the week will be so enjoy each day as best we can.
I'm sorry to hear you are having a difficult time. It is hard dealing with a cancer that it seems to me people don't have much sympathy before, to my sister it isn't a real cancer...ouch. That's why this forum can be so helpful, we do understand, we are in it. It's not an easy journey, and it can be lonely. I found great help at my local cancer charity and Macmillan that i was referred to by my haem team when I was really struggling. You are not alone. Best wishes, Mal
You are right, for some people it’s difficult to understand non-solid cancer. It’s hard to explain when we are tired or have low energy. That’s why we have to work hard in keeping the rest of our immune system working the best we can. I found that taking some supplements help me get the energy I need to be in the best possible shape I can be… It feels like a full time job… but it’s worth it… I am 70 now and I have been dealing with this for 17 1/2 years already. Now going for another 17 1/2 more…
Do you mind my asking if you have had active treatment in the past 17.5 years?
No, I am still in W&W… My numbers were going up the first few years, it took about 3 years to double, but then I made several life changes and the numbers stabilized…
My experience exactly, grateful on one hand to have Ibrutinib but so very tired of the day to day struggle. I guess it depends on the side effects you suffer. Sometimes it’s good to talk to the group as others are having similar issues. Good luck . Sending hugs
Hi Tomich, it is very ironic, the medication that is supposed to work well for us presents us with side effects such as not able to swallow, which I am experiencing since mid April as a result it is difficult for me to swallow the meds. Very disappointing and frustrating. Drs can’t help the my situation, though I have been in hospital for 1 full week to have this issue resolved. Only solution stop the med till swallowing gets better. May reverse my progress this far. Love of life.
CLL gives us so many peaks and valleys. I’ve been very fortunate. Once I started Ibrutinib 5 years ago, I got my life back. I push myself to enjoy the tiniest of things. CLL will not define me. It’s my mission to find enjoyment in each and every day. Nightly, I write down things that gave me joy. It’s good to look back at at the beautiful things that have touched my life. ❤️🙏
I hope you find comfort from those of us here. We either have CLL or help someone who does. I have found that it is challenging sometimes to keep going. This group helps me regain my sense of humor and balance.
A CLL diagnosis is rough, I was lost for about 2-3 years after diagnosis. But I will always remember what the oncologist told me when he gave me my diagnosis. He said: “If I had to pick a type of cancer, I would pick this one…” At first I didn’t understand, but over the years I understood what he was trying to say. CLL gives us plenty of time to learn to live with it, to adjust, and to wait for better treatment options. When I was diagnosed chemotherapy was the only option. Today there are plenty of good treatment options, and new ones on the way… After all life is chronic condition all we can do is be as productive as we can be and hope for a long long life… best to you
I know well the valley you describe. Quality of life matters much more to me than length of life. I am finishing up a 14 month AVO trail. It's been hard, with lots of side effects. I am feeling like a plant the mower has run over every spring, summer and fall.
I am being restaged soon, doctor's speak of a "drug holiday" like being ill and on drugs is the default setting. I'll give it a go in spite of their "optimistic" view.
Perhaps this spring the mower will not come and I'll send up another lead. If there's anything I've learned from this experience, it's surrender.
Good luck with your continued recovery!
Much appreciate you sharing your journey’s path through your travel against this very unkind, deceiving disease. 🤗❤️Thank you.
I have been exactly where you are right now. I hated being on Ibrutinib because of the quality of life it gave me. I thought if this is the way I'm going to live, this absolutely sucks! I couldn't have been happier when it stopped working on my blood. Venteclax was my new life line and made my quality of life MUCH better and gave me a partial remission and I get a "drug holiday". Whoop whoop! 👊You will find what works for you until then we are here for you. Nobody fights alone in this wonderful group! Be kind to yourself any cancer diagnosis can be overwhelming for sure.
💜👍
Hey you! 👋 How you doing today?
Cancerwarrior I'm just worried about some a test I had yesterday and the results. My mind is in the gutter.
How can you make things better by worrying? You can't silly. 😜 It takes too much energy for me to worry. Not sure if you want to share the kind of test but you know you can PM me anytime. When do you get your results back? I'm so glad you are getting tests taken care of. GO YOU!!! I'm 🙏 you get good results and start feeling better soon. 😊
Sometimes I think it's like the little kids on the St. Jude commercials - the worst part of having cancer is knowing you have it. Hang in there. My numbers jump up and down for 4 years now - no TX, But I am very depressed and anxious - even with meds. Pandemic and financial concerns make life hard to deal with.
You know, AmCLL, my mom always told me, "Look over your shoulder, there is someone else worse off than you." I understand what you are sharing and I do get a "crick" in my neck from "looking over my shoulder" so much. I like the positiveness in what is expressed on this forum, and I am sure all on this forum can relate to your post. What I'm saying is we are fortunate to have so much being done on our behalf, but we must remember our reality is that we must stay aware of our weakened immune systems and be vigilant in taking care of ourselves. Also definitely find a welcomed stress release activity or hobby to go to. 🙂 Sandra
Dear AmCLL, you are clearly going through a very down period about your diagnosis. You have done the right thing to post your thoughts here…the people here are all wonderful and supportive and most importantly have been through those dark days and nights. For me personally (diagnosed just before Christmas 21, now undergoing treatment and have a 4 year old and a 14 month old), I love this group, we are like a family and the people here have given me a great deal of comfort.
When I first read my medical notes after diagnosis, I was horrified to read ‘family history of Leukaemia’. My father died of Acute Lymphoblastic Leukaemia when I was 15 years old. Let’s remember though that what we have is chronic, not acute. Big difference…We are unfortunate enough to be blighted by a chronic disease and it happens to have the word cancer connected to it. The way I see it though in order to preserve my sanity is that with the excellent treatment available, this is not so much different to living with diabetes and other long term diseases. I wish to goodness I didn’t have it, but at least I haven’t got something like my father had. In a way, I feel fortunate…that sounds silly doesn’t it. How on earth can one be fortunate to have cancer. Look at it this way, I got it..you got it…all the other very lovely people here got it…we’ll be ok. Why, because this is chronic and because there are the most wonderful treatments being developed. Stay strong and continue to reach out for support.
My very best wishes to you
Emma x
So truthful....I agree with you completely
Thank you Jammin, I am upset because I can’t eat or swallow my medications that are supposed to help me. I am feeling restless. Dr can’t solve my problem.
My GP is referring me to ENT, I have be very very lucky if I can get an appointment with ENT within a reasonable time . Normally it takes 6-8 months to get an appointment with them. Hopefully they can understand my urgency and give me a sooner appointment. Meanwhile I have been give a 2 weeks break from Ibrutinib. Not a very pleasant situation.
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