I was DX w/ CLL stage 0 last week. I'll be 60 next month, exercise regularly and am vegan. Thought I was healthy. Scared to death. I get FISH results the end of the month. A lot to wrap my head around! Crying a lot..unpredictably. Can't turn my brain off. Keep looking up info on Internet which is not very comforting or encouraging. I can't believe this is happening. Haven't told my children yet. The look on their faces is going to break my heart. Needless to say, I'm not handling this very well.
New diagnosis: I was DX w/ CLL stage 0 last week... - CLL Support
New diagnosis
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Summer4fun
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Hi Summer4fun,
You sound like me. I am 57 years old and was diagnosed last month, CLL stage 0. I am not vegan but I do eat healthy and was exercising regularly until my diagnosis. This website has lots of good information and brave people that you can learn from. Life is not fair, you have to try and find the strength and not let this define you. I recently had my flu shot and I am going to get my first pneumonia shot tomorrow. I have never been one to take any shots or medication. We have to be extra cautious. 😇🙏😇🙏 stay strong.
Angie
Allow yourself to be upset. I had a night that I didn't sleep a wink. And if I wasn't so dog sick at the time with pneumonia I would have been that upset for longer. Bottom line is this is a massive thing to get over. I worried myself sick about telling my kids. Especially as two of them were doing exams at the time. Once I had a chance to get into the right frame of mind (and had been treated aggressively for the pneumonia) I told them one at a time. It was much easier than I thought it would be and a weight off my mind. Remember over 80% of us make it more than five years. Many don't even need treatment for years and years. But don't let anyone tell you that you "shouldn't be so upset about it!" See if your service offers psychological support. I've found that invaluable. And hopefully this forum will be great also. Good luck. Sorry you've had to join this family, but I hope you'll be glad you are not alone.
Welcome!
I am new and still learning. I was DX in August. I am 67 healthy, active,eat right etc. and that is a good thing because that makes me stronger to fight it. I too have just received pneumonia vaccine and I will be getting the flu vaccine as well.
In all the reading I have done what got out of it is the treatment will be harsher for you then the present symptoms you have and the longer you can wait for treatment the better the treatment will be.
Presently I have enlarged lymph nodes, some painful although most places you read they are not painful (go figure) and I do feel more tired than usual. Like I always cook Sunday dinner for my family and I would be disappointed if they were busy. Now I think that's great I can relax. I think I am also enjoying the nice moments more since I have been DX. It sure has been a shock.
I have been repeating as needed. I am fit, I am healthy, I am strong. We can do this fight together. I love this this group and the wonderful information I have gotten here. Stay strong!! My best, Wendy
My CLL was discovered when donating plasma. The initial panel they do before donating showed and abnormal gamma protein. There told me to eat more protein and come back in a week and check it again. Still abnormal. Googled it and found gamma protein has nothing to do with diet and but can be caused by several disorders including CLL. Saw oncologist and I do have CLL. Get my FISH results from my oncologist this week. I have absolutely no symptoms. I feel great! Will be 60 in afew weeks, people think I'm in my 40's. if I hadn't given plasma, I wouldn't know that I had CLL and could of had several years of NORMALCY...instead of constant crying, depression, insomnia, anorexia, withdrawal, fear, brain fog and I'm sures there's more, just can't think of them now. When I'm asleep is the only time I don't feel the internal turmoil, fear, depression, crying, etc. I take a half of alprazolam and go to bed really early these days.
Summer - I was DX when I had a breast biopsy. Very shocked because I feel well too. Although all the breast biopsies (18) were benign it was recommended that I have the mass removed. Friday I had the mass removed, waiting for results.
I am relying on how good I feel to manage this CLL. Take deep breaths you can get through this.
Thanks. I hope you get good news.
Completely understand, was diagnosed March this year. Let it be for a month or so, do not struggle with yourself, do not read absolete stuff on Internet, all knowledge or references to it u can get here. Concider taking some natural stress reducers like valerian route. No need to tell kids right away. It is only extra stress for u, things will be very slow, u will have time to read, reconcile and think of plan of actions. Very good u did FISH test. Start looking for CLL specialist, many references on this site. Just wanted to say couple words to u right away. More serious replies are coming up soon. It is doable, i am the most nervious and pessimistic person in Universe and still functioning, Keep your sunny side up, keep us posted how things going
NewdawnAdministrator
Hi Summer and a warm welcome. Glad you had the sense and courage to join us. Now divert yourself from scary Mr. Google and lots of out of date and out of context info that will sap your hope and find the real deal on here! That stuff out there still terrifies me but you could die of an ingrowing toenail according to some information on the net!
Of course you're terrified and shocked and don't know how you went from being a happy, healthy, clean eating individual to a baffling diagnosis that seems to make no sense but throws up too many frightening uncertainties. How do you explain this to your loved ones when you can't even get your head round it yet? My honest advice is don't at this stage. Allow yourself time to learn, adjust and find some equilibrium. I promise it will come and you'll feel better equipped to share it. It's taken me a very long time to reach the sharing stage and I don't regret it at all. This can be a very very long journey and there's no rush at all. Take comfort and support from the best people who can handle it but remember they won't understand this and will have a disproprtionate level of fear if they sense it in you.
You're at stage 0 and that's very early. 5 years on I still don't know my genetic profile because we are not routinely given FISH testing in the UK. It's a bit of a double edged sword. Hope yours is the best it can be but it's not always the whole picture.
At the moment it's your emotional response to this which is the vital thing. Please know that we totally understand this. It changes our reality and re-writes our life plan without permission. However, as scary as this is, it's do'able, liveable with and we can reclaim our sense of well being. Treatments are racing ahead and challenging what CLL throws at us so there's so many reasons to remain optimistic. Read the mass of information and advice on here Summer, take support and friendship from the fantastic fellow CLL'ers and learn about your 'enemy' because that takes the sting out of it.
No need to break your kids' hearts...their mum isn't going anywhere for a very long time!
Warm best wishes,
Newdawn
Wise words, Newdawn. You are an inspiration to us all!
Thanks Newdawn! I wish I could give you a hug! My FISH results came back: 13q. Doc said I'd probably die with CLL, not of CLL. Caustiously optimistic.
Hi Summer -
Welcome to the community. I was also diagnosed just recently, in July, and have found this forum to be a game-changer for information and support. Of course we'd all very much rather not be here! but it's a super helpful community.
While I'm still mourning my pre-diagnosis outlook, I'm finding it a lot easier to deal with my cancer-patient status without panic. I can relate to your "can't turn my brain off" . . .that was me, too. But for me things are much better a couple months on. For example thinking about cancer doesn't keep me up at night and I don't wake up thinking about it first thing in the morning any more. (I've been talking to a therapist, too, since my dx, which has helped me a bunch). CLL isn't a death sentence and I think the more you learn about it the more comforted you'll be. I'm also appreciating the perspective from this initially-frightening diagnosis to help me reach out to people better and try to live each day "as if I stole it" (as one person here said).
One good piece of advice I got early on on this site: stay away from Dr. Google! He's a mean old doctor and his information is outdated and inaccurate. Things are changing fast with treatments for this disease - my doctor said the old stats don't even apply to the stage 0 patients of 2017. Instead, read up from the links pinned at the top of this site, they're managed to make sure they're accurate and up-to-date.
Take care,
- Marie
I agree. Since being diagnosed earlier this year, I feel motivated to expedite the process of receiving new medications. I think we need to advocate to make clinical trials less expensive and easier for patients and doctors to participate in.
Summer,
I know how you feel, same situation I am 55, never smoked, I have been in the gym the past 20 years, eat right look like I'm 40. Complete shock and the early weeks you really wrestle with emotions and what to do both medically and psychologically. I was diagnosed early July and was googling non stop. There is a lot of good information but also too much and dated information. I finally stopped a few weeks ago. I think educating yourself is good so you can be your best advocate but there is a point it consumes you filling you with many different emotions. I told a few close friends which the look on their faces was so upsetting that for the time being I have decided to not tell anyone else including my kids. I will wait until I have to why have them worry. I also believe the stress from knowing has impacted how I have been feeling. There are days I feel off and I noticed they seem to correspond when I am thinking too much about this whole situation. I went out last night with friends had dinner and a great time and today my energy level was pretty close to almost normal. Maybe just coincidental but it was a nice day. So yes educate yourself so you can get to a point where you know as much as possible to be your best advocate, use this board and other sources to get useful/helpful answers and take it one day at a time. I still have my mental meltdowns but they seem to be less often for now. Stay strong!
Thanks to all for the comforting words. You all seem to be so with it and have the right mindset. I hope I can get to that point soon. I am an emotional basket case right now. I hate to cry and it seems like that's all I do.
Again, thanks so much.
welcome you will get to the point that Cll is part of you not some strange outsider. It takes time to get there and the integration happens at a different pace for all of us. Try and absorb that this is not the end of the world because it isn't. It will be hard at first but the more u learn about CLL it will be less scary.
Breathe!
Summer,
I'm about six months further along than you are and your reactions are quite normal. Most of us have been through the same thing. And the first few weeks are very bumpy. Yet, life goes on. You will gain more knowledge about the disease and you will understand that there are a lot of good options available, with more on the way.
This site is a fantastic place to gain knowledge, share experiences, and learn. I encourage you to take some time and read what your fellow students are posting. It's some really good stuff. I also encourage you to find a good CLL specialist to become part of your medical resources. Give yourself the best chance at the best possible outcome.
Finally take care of yourself. It will get better and we all wish the best for you.
Dave
Welcome. Try not to read too much internet. Stay in the moment. This is a long road.
Hi Summer4fun,
I was in the same boat as you are last September. Stage 0 no symptoms. Diagnosed at routine checkup. I was reminded of my CLL today because of an email. I don't think about it daily or hourly-like I'm sure you are now. I remember those first few months. I researched like crazy. First thing is to find a great oncologist/hematologist you are comfortable with. She reminded me of a fellow doc who has had it for 15 years and still working on Watch and Wait and feeling well. My numbers are stable now at 21 WBC. Diagnosed at 16. Bloods taken 3 mos now every 6 mos. doc thinks I had it 4 years ago when WBC was 14 at ER visit.
I have 2 adult daughters and have not told them. I am not sick and very active so they have no reason to suspect. I will when and if I need to. It will change their lives.
My best advice.. give it time. You will get through initial shock. But it will take months. I was a blubbering mess for a while. I would sit at work with tears rolling down my face!! I have told my husband, sister and brother (who is a retired physician) also one friend. That's all.
Stay healthy. Important to keep vitamin D levels up. Have them checked. Also eat well and STAY ACTIVE! From my research it is vital to keep your metabolism up. Walking, exercise classes, aerobic exercise. Check into info on Green Tea extract links on this site.
Stay in touch. This site really helped me initially. The ability to talk to someone who is a fellow CLLr was invaluable to me. And is now!
Wishing you the best,
Patti
Hi Summer
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
Hi Summer
by now you will have realised that you are not alone, lots of good advice coming from your community, its yours as well as ours now. This community, family, club, forum or whatever you want to call it will be here for you whenever you need it, whether it is to share the tears, encourage, answer questions, or listen to you when you need to let off steam.
Most of us recognise the fear, the panic, the inability to get your head calmed down, it is a very common reaction. It's ok for me to say just breathe it is going to be something you can deal with, but we know you have to go through the stage to acceptance.
I am nearly 7 years along in my CLL journey and recognise many of our community who will try to help you over this first step, I well remember not only my own fears but the many here, who like you, were in a state of shock and panic. It will pass and you may find in the future you are among those who will be helping others come to terms with their diagnosis.
We are not doctors but just people on the same journey, but remember when reading posts and replies that some are many years ahead of you, into and over treatment, which you may never need. Strongly advise you ditch Dr Google he really is a pain in the B--t, take time to understand CLL, I recommend learning slowly at your own pace.
For now, keep eating healthily, carry on keeping fit it will be good for you. Lots of medical advances being made which you will learn about.
Be calm, practise deep breathing, this panic will subside. If the tears continue, do seek counselling help.
Best wishes
Bubnjay1
I know you have had lots of comments already but here are mine.
A similar age when diagnosed, I was informed by letter (my doctor was going on holiday and hadn't been able to contact me by phone). I worked regularly on my allotment, been vegetarian since aged 16 and fairly strong.
There were no tears at all, as I was expecting a worse diagnosis! Yes, I am a glass half-full person and have lots of hobbies to occupy myself. I also I told everyone, while hastily adding, it's chronic not acute. (This may be partially because my mother never told me of her stomach cancer until late on.) It was necessary that people around me knew I didn't have as much energy, and would get breathless when walking uphill, then my daughter produced 2 very lively grandsons.
I should now say that it was 10 years ago when I found out about my CLL and I am still on W&W. I do have times when it bothers me, e.g. when my underarm became swollen after a flu jab, but I felt much more upset when my husband had a heart attack last Monday. He is home now but when he was diagnosed originally with an autoimmune disease, scleroderma, I used to say we would be going slowly downhill together....
Summer, I remember it like it was yesterday. Now, looking back 11 years later, I'm doing well and nothing much has changed - no treatment. But I've changed for the better on the inside. That's a benefit I never would have expected.
Marcyh
The CLL Society web site can help you.
30% of people never need treatment.
Don't do anything too quickly. Keep learning.
See a CLL Specialist if possible.
I am so glad I found this sight. There are no words to express how comforting and heart warming all of your words and advice are. I feel so alone. Haven't told anyone but my husband and supervisor at work. So far have been able to hide the crying at work but I'm sure not for long. I HATE TO CRY!! I finally got my husband to face it this evening. He just kept thinking that if it's stage 0 then I don't have it yet. So many sites I've look at say death within 3-5 or 5-7 years after DX. OMG!! Much different testimonials on this site. I saw an Oncologit last week. I really liked him. I see him next week for my FISH results. Husband is going with me. THINK HAPPY THOUGHTS! Trying to stay positive but that's easier said then done. Once I think of my kids I start crying/sobbing. This still doesn't seem real. It's the last thing I think of before I go to sleep at night and the first thing I think of when I wake. Lorazepam has helped. Think I'll seek counseling as several have suggested. I'm so depressed, so pissed! I don't smile any more. So not me!
Hang in there. You will get through it. I remember once in the first month after diagnosed , being so strong at work and walking through the door of our home and practically collapsing on the floor sobbing. My husband held me and we cried. Then it was over. We had a daughter getting married in a few months and lots of life to live.
In stage 0 - 3 years in and making plans to retire next year ( earlier than originally planned). I've got a lot to do and I'm going to do it as long as I can.
Want to comment on FISH test. Mine showed inconclusive. No genetic markings showed. ? Doc said that's good. Not sure but not worrying.
Best wishes
Patti
Summer, beautiful way to start off your CLL experience. As you know you chose the hottest season for your name. I always try to figure why individuals come up with their on line name. I chose Sally you r not alone.
It has been almost two years since I was first diagnosed with CLL/SLL. I felt my world had collapsed. I cried and laughed all at the same time. I was not the individual to keep this all to myself. I'm a spiritual person and I wanted prayer from everyone I knew. I told my children and got everything in order. It has been two years and I'm not disappointed I did so.
At the time I knew I wanted the best treatment I could find. I found my specialist and found all the fear was justified but just to early.
I've been blessed my numbers or back lower than they were when I was diagnosed. I realized I did not have to see my CLL specialist and have found a local oncologist in my own state. I continue to have correspondence with MDA in Houston, if and when I may need treatment.
My children and friends have and still are aware of CLL but as of now it is not the end of the world. How you decide what to tell is entirely up to you. There is no right or wrong in what you decide. I believe we all have to do what is RIGHT for us.
Remember you r not alone! May your journey with CLL be a long journey with all of your new friends. Welcome!
It was so great to read your post. I was diagnosed 15 months ago at age 57 and the crying comes out of nowhere. I can whale my heart hurts so much. I can feel so sad and afraid and alone. And i am far from a cryer or whatever. I feel like such a wimp... so weak like what is wrong with me. I could cry right now if i though the right thoughts. Im a surfer, off roader, snowboarder, strong, eat healthy, very successful - built and sold a couple companies... and cry like a baby. Buddy you are NOT alone. If you are married you should let her read this and others. She will never fully understand from your own words but hopefully she will try.... and she will be so worried not knowing what to do or say. You let it out buddy. I luv u just for sharing this. A burden shared is half a burden. We need to talk to each other. On the upside of all of this my doctors at sloan in nyc, columbia nyc and ohio state all have told me that if there is any time to get this disease it is now. The options for treatment are incredibly effective unlike ever before. The drugs and traetments for CLL/SLL are the most advanced of any cancer treatments. There are amazing targeted gene therapies whose success have been unparalleled. Drugs like Ibrutinib and Acalabrutinib... and they keep getting better. Cry, talk, share, write me, if incould privately give you my cell you can call me and cry with me. I will listen. This disease does not define you... i wish i could say more to help... All that you have said i understand. I am starting Ibrutnib in 3 days and am terrified. Its how i feel. Also because i have no symptoms. What i have is my prolymphocites are proliferating and am 17p delete/p53. A few small lymph nodes. So mine is very dangerous and I must start treatment which feels crazy cause i feel fine. My final words are to get MULTIPLE second opinions. I kid you not. Trust me. I have been misdiagnosed twice. My doctors i have now are some of the best in the world according to so many others if you are in the US i would be glad to privately share their names with you. Anyway, hang in there brother. You are not alone. Your friend - Roy
You are in good company. I was dx @ age 56 after being misdiagnosed by 6 Dr.’s. It was challenging to accept and I was alternately angry and sad. My sleep was affected, adding to the fatigue I had been experiencing for sometime, so my Primary care Dr. suggested I try Trazodone. It’s an antidepressant that has been on the market for a very long time. It helped with the insomnia as well as the depression I was falling into.
5 years in, my blood counts are holding pretty steady so my CLL is still stage 0. Because it was discovered at my initial diagnosis that it was in a large number of my lymph nodes already, I am stage 3 with SLL.
At my most recent follow up (I only go annually at this point), it was discovered that I’m officially immune compromised. So it’s always something!
But as my CLL specialist said at our first appointment, I can plan on living a long and healthy life.
Best wishes.
I am 61 and also recently diagnosed. Stage 0 CLL. I can understand your emotion. Get your vaccinations (except shingles - that's live). Thing that REALLY helped me was finding a cancer support group in my area. I found a blood cancer group. It had CLL patients in all stages, including someone diagnosed with Stage 4 who is now post-treatment and in remission. Knowing where to get information and support is key to not feeling like you are sick and alone. I consistently hear positive outcomes with CLL and the treatments available today. Be positive and take care of yourself.
I've come to really appreciate the saying that "Worry never lessens tomorrow's pain but it steals strength and joy from today".
I am so sorry that you feel being diagnosed with CLL is such a burden.I have had it for 9 years now and refuse to let it screw me up. initially I too was upset and angry (the heamotology dept at the hospital were not helpful they were so matter of fact) I have learnt to live with my diagnosis, I am tired a lot and prone to infections yet have structured my life around my energy levels,in the morning i do anything that needs my energy ie cleaning the house and then spend the rest of the day visiting old folk who are friends,generally by 5pm I am totally knackered. I have learnt to be positive and happy (I also have a heart condition and severe ostoe arthiritis.) I am learning to say no to people who demand my time and energy and look after myself.Having a pet really helps and comforts me,I do hope you can come to terms with your diagnosis as there is nothing we can do about it except look after ourselves. Eat Organic and have a positive attitude. my prayers and thoughts are with you Maggie
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