Hi

I'm overwhelmed by the CLL diagnosis. Had a gallbladder attack that led to the discovery. It's been less than 2 weeks and right now I'm focusing on my gallbladder. Had an ultrasound and I'll see a surgeon next week. One crisis at a time. Yet this hovers over me while I wait for the genetic test to provide a bit more info. I see the oncologist again in July. I'm hoping to be better prepared with questions. I'm in W&W and learning all I can.

20 Replies

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  • Deep breaths and learn, especially from sites such as this. It is overwhelming at first, know you are not alone Molly and you have many wise and empathetic friends on this forum. P.s. I an not one of the wise ones but try to give a listening ear and empathy! 🙂

    UK Marc

  • Hi Molly, it is a big shock to be told you have CLL especially on top of your gall bladder problem. My husband was in terrible pain from his until his successful operation to remove it from which he 's had no after effects.

    Many people with CLL are on Watch and Wait for many years and 30% don't even need treatment. Furthermore there's a lot of research going on and many good treatments should you ever need them.

    All this I have learned from this informative and supportive site.

    You are among friends here.

    A big cyber hug . I wish you health, serenity and peace.

    Sue UK 🌺

  • Hi and welcome Molly

    Now that's a bit of a shock investigating gall bladder and then being told you have clll. At least hopefuly you will be getting rid of that gall bladder and it's accompanying pain. I hope you find you have the indolent CLL which for many means you may never need treatment.

    I am into my 7th year and although I have some pesky nodes in my neck and suffer from our common symptoms tiredness and wonky temperature regulation I do not need treatment these years later.

    You may find it helpful to know of all the blood results, it is the absolute lymphocyte count known as ALC that is used to measure disease progression in the early days. You will learn lots about our disease from our community, but no need to blow your mind by trying to take it all on board at once, CLL usually progresses slowly so take your time.

    The panic caused by the diagnosis does fade, many here to sympathise as we have all been there. Our immune systems are a bit poorly so try to stay away from infections, PaulaS has written some coping strategies to help keep us healthy, you will see them in the pinned posts.

    Best wishes do let us know how you get on.

    Bubnjay1

  • Hi Molly - it's a tough time but CLL can be managed successfully among many patients. You're doing the right thing by focusing on one aspect of your health a time.

  • Hi Molly

    I hope that you can make good use of the good people on here who are only too willing to help in any way they can.

    Some can help with technical details, some with advice on coping, others who'll pop in for a chat or listen when we feel the need for a rant ...

    We all remember how it felt when we heard the word Leukaemia, and I certainly recognise the person in your post .. on here you are most certainly not alone with your CLL.

    I am glad that you have been led to this site, and I hope that like so many on here you can use the good will of those who will take the time to help in any way they can.

    On here there are no stupid questions, so if anything is bothering you just ask ... as you can see already you've just met some new friends.

    I was diagnosed in 2006 after a routine blood test, I'm still on W&W.

    ygtgo

  • Hello Molly2017 - welcome! Haven't been here long myself and am stage 1 w&w. Totally knocked sideways when told October but I must admit it is getting easier as I know now what my tiredness is attributed to. Am sure you will feel the same way soon. You will get all the advice and information you need on here and have plenty of time to have your questions ready.

    Are you planning on taking someone with you? It helped me as I usually forget something and my husband is always more honest than me about how I really am! xx

  • Hi Molly, I know it is hard to hear. At first you can't believe it's true. There is alot of emotional ups and downs. But when you get a chance take time to read this blog and learn about the disease. There is such good info on here and many links to research articles. You can also click on the name of some of the administrators and see their posts which have a lot of official information. Good luck and hope you get that gall bladder out asap.

  • Hello Molly and welcome to the group. All of the initial comments have been covered. Journey with us and you won't be sorry. Hope your gall bladder issues resolve without delay.

  • Molly ... my diagnosis was back in 2013, and my family intervened and insisted that I get a 2nd opinion at cancer treatment center so we ended up making the 400 mile trip to M D Anderson.

    Bottom line: while a local oncologist can be very helpful, I recommend you also see a CLL specialist as he/she will be knowledgeable of the latest treatments and has the experience of treating CLL patients daily. If you are in the U.S., here's one source compiled by Dr. Jeff Sharman for finding a CLL specialist in your area ...

    cll-nhl.com/p/cllnhl-doctor...

  • Hi

    Thank you for the information on locations of CLL specialist. I have several to choose from in different locations but all several hours away. At this time I'm not having symptoms and my genetic tests came back with no mutations so my prognosis looks good. When it's time I'll check out a specialist. My gallbladder surgery is set up for June 20. One event at a time.

    The best part is how my family is focusing on quality of life. Nothing like a wake up call.

    Thank you for the kind words

    Molly

  • Molly ... I had my gallbladder out back in 1996. The surgery & recovery were easier than any gallbladder attack I ever had. My surgery was at 2 PM, and my wife whisked me out of the hospital at 8 PM & took me home.

    She said to me, "Every time a nurse comes in your room, you perk up & start talking to them." I was under the influence of drugs so I said, "Well, they were carrying needles, and I always have to be careful when they come into my room."

    I had 4 small incisions, and they were tender but not really sore. The next morning, I drove myself to Whataburger for breakfast. By the next week, I was back at work. I had to go slow for a couple of weeks being careful not to pick up anything very heavy.

    I was mostly recovering from the anesthesia which made me groggy for a day or so. Just give me a bed & pillow.

    Lynn

  • Hi Molly,

    Welcome to the site – I’m glad you found us.

    I know what you mean about focusing on one crisis at a time. It’s bad enough to have gallbladder problems, without CLL being found at the same time!

    I guess you wouldn’t have known you’d got CLL if you hadn’t had blood tests done re the gallbladder. Hopefully that means your CLL is in very early stages with no troublesome symptoms yet, so you can put it on the back burner till you’ve got the gallbladder sorted. As Saska-Jul31 has said, many people don’t need treatment for their CLL for many years, if at all.

    It was just two months ago, that I was diagnosed with gallstones. Very painful, but much less now that I’m on a low fat diet. It seems that small stones were being passed down my bile duct and getting stuck, causing painful blockages and making liver function tests go “deranged”. Not good.

    Apparently if stones are too big to go down the bile duct and just sit in the gallbladder, they don’t always cause problems and can sometimes be safely left there. But just the presence of gallstones can be more problematic for CLL sufferers than other folk, because they can cause irritation and infection – which is not good for CLL. Also as our CLL "progresses", our immune system gets weaker and any surgery may be more problematic. I assume your surgeon will be aware of all these things. My surgeon liased with my CLL doctor and they all agreed I should have the gall bladder removed – sooner rather than later.

    I’m now scheduled to have surgery for removal of the gall bladder next week (on Thursday 18th). I will be very glad when it’s done. I’m not on any treatment for my CLL at the moment, but I’d like to get any surgery out of the way before I do need more treatment.

    Let us know how you get on with your surgeon appointment next week.

    Wishing you well,

    Paula (in Sheffield, UK).

  • My surgery date is June 20. While low fat no fat diet helps with weight loss it's a rough way to eat because even with a careful diet I've already had another attack tho not as painful as the first one. Hopefully your surgery will be a smooth one and a speedy recovery.

    Molly

  • Hi Molly,

    Sorry to hear you've had another gallstone attack, in spite of being careful with your low fat diet. You're right, the diet is no guarantee. I was still getting discomfort/mild pain most evenings in spite of being very careful what I ate. :-( But at least I didn’t get any more of the really painful attacks after starting the diet.

    Good thing you don't have too long a wait till your surgery on June 20.

    It was good to hear that LynnB1947 had such an easy time with his surgery. That's usually the case for gallbladder keyhole operations, but it wasn’t quite so simple for me. I had the op last Thursday and all seemed OK at first, but two days after surgery I was readmitted to hospital with falling blood pressure and fresh bleeding from one of the four incisions.

    I’m home again now, but recovery has been slower than I’d expected. I still feel very washed out.

    I don’t want to put fears into your mind re your own surgery, because the op is usually straightforward with quick recoveries. But looking back, I’m wondering whether the giving of anti-coagulant injections post-op (to help avoid thrombosis) is always the best for CLL patients? I suggest you make sure that your haematogist liases with your gallbladder surgeons about this (and any other CLL issues).

    My surgeon was very aware of my CLL and had done tests for platelets and clotting times, which seemed adequate. However, it is strange that I had such unexpected bleeding two days later. I was taking things easy at home – not being too energetic.

    Wishing you all the best for your op. Hopefully yours will follow the example of Lynn's and you will bounce back very quickly.

    Paula

  • Thank you Paula

    Sorry about your set back and glad you're doing well now. That's great advice to link my oncologist with my surgeon. I only told the surgeon that I had CLL and that my platelets were 174. Her only response was that she didn't need to give me a transfusion during the operation. However I never thought about telling my oncologist I'm having surgery. Everyone is at the same hospital and has access to the same info that I forgot it's my job to keep everyone informed. Thanks again for the reminder. I'm just a month into finding out about this CLL and so not into the swing of things. Heal quickly ❤️

    Molly

  • Yes Molly, we can't assume that all our doctors will liase with each other or have the relevant information about our case, even if in theory they can access it. The longer we have CLL, the more we find ourselves collecting copies of blood tests, reports and various other things to take to different doctors' appointments. I have a box file that is now overflowing with such things...

    As you say, you're just a month into finding out about CLL, and these things are very new to you. Over time, we do get used to it and adjustments to CLL become part of our lifestyle. Those adjustments don't need to dominate or define us, but they can help ease our CLL journey.

    But for now, it's the gallbladder surgery you'll be concentrating on. I hope it all goes well. I'll be interested to hear what your oncologist says about having anti-coagulant injections post-op, and whether doses should be adjusted for people with CLL. I never thought to ask my haematologist about that, because I hadn't realised I'd be given those injections until the nurse came up to my bed with the needle!

    I'm recovering better now, thanks. Been struggling with persistent constipation ever since the surgery, but hopefully it will ease off soon.

    Best wishes,

    Paula

  • Welcome to our little community Molly even though we all know you don't really want to be here. But you will find that you will get lots of information and support from the wonderful folks on this site. Ask whatever you want to know and someone will come along to answer you. It's also a great place to vent when you feel the need. I can relate to the gallbladder issue - been there/done that myself. I hope all goes well for you and long may you be in watch and wait.

  • Molly we all so understand how your feeling .. focus on the words CHRONIC. .. God willing you'll be on w&w for years,and years.

    Just yo encourage you , I felt just like you on diagnosis. .It overwhelms your every thought and the enormity of it all is challenging .. However .. Through treatment .. Back at work .. feeling grateful and thankful. Be still and process. Learn .. cry ... be angry .. Then open your front door and live the wonderful life you have xxx

    We are all here for you x

  • I was diagnosed five and a half years ago and yes it is a terrible shock but you'll be ok. I worked with no problems and didn't even have an infection. I had treatment this year because of feelings of fatigue and lumpy nodes in my neck. Post treatment I'm back to my energetic self with a lovely lump free neck. Nobody noticed my neck by the way or even noticed I was sick. I feel it was best for me not to tell anyone about my illness as it allowed me to live for five years without thinking about it. I put it to the back of my mind and got on with living and traveling. There are so many new treatments in the pipeline at the moment by the time you need to be treated you might have to only pop a pill. Good luck and keep your heart up!

  • Don't be. There is a lot to take in and learn. Try to stay as fit and healthy as you can and keep your head in the right place. You are stronger than you think.

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