How were you diagnosed with CLL? Feel ... - CLL America Support
How were you diagnosed with CLL? Feel free to reply to expand on your diagnosis experience.
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I was diagnosed after an elevated WBC count during my annual exam.
Thanks for participating in our poll! Have you undergone treatment yet or are you in watch and wait?
Watch & wait.
I posted once months ago. I am the caregiver for my husband, age 84, diagnosed last year with CLL with 11q & 17p deletions. He has other health issues with sick sinus syndrome in his heart for which he has a pacemaker. Also afib & macular degeneration but is on only 2 regular meds (coumadin & flomax) and 2 eye drops.
He decided against any treatment at all for his CLL though his previous oncologist pushed information about many treatments on him again and again even after Bob told him he didn't want treatment. His WBC & lymphocytes continued to rise and now, 10 months after diagnosis his WBC is 168. During this past 10 months he had been extremely tired to lethargic, poor appetite, losing weight and 5 weeks ago developed a small swelling in a groin lymph node.
But something good has happened. Early last month he had an appointment with a new oncologist who gave him her hour long undivided attention to listen deeply to him as he told her his story. After that visit, he seemed to perk up and had more appetite. Also his 3 sons recently visited for the weekend from long distances away, and he was buoyed up even more and so far it's holding. It's been 3 weeks since his followup visit with the new oncologist. His lymph node has not continued to swell and in fact has gone down slightly with no meds. His appetite has picked up and he has gained a few pounds back. His attitude is very up as well as his energy. Though he won't be running any marathons, he is still actively participating in his life, visiting friends, going out and about, doing house chores etc. His quality of life has improved amazingly with only one side effect...a positive one of making us both feel very happy. We are grateful for each day we have.
Thought it might be interesting to others to hear another type of story when a patient decides not to have treatment and what might happen. Everyone is different and who knows how long this will last or what is ahead for us. But we will deal with it in the best way we can at the moment where we stand at that time.
Thanks for sharing your husband's story! This is super interesting and encouraging! I'm really glad things began to change for the better after the new oncologist appointment and visit from his sons! How have things been for you as his care partner?
i was diagnosed after returning from Africa. 2 days after returning i was really ill and tested for Malaria and every other disease known to man (it felt like). The results showed My wbc was high and after firther tests i was given my diagnosis on Christmas eve 2014 - kind took the pleasure out of christmas that year but still would have been worried if id postponed my appointment so it was a no win situation.
Wow what a story! yes testing is definitely no fun but glad they got to the bottom of it and were able to diagnose! Have you gotten treatment or are you in watch and wait?
I am in watch n wait. i initially had iron infusions but i think im all good now. I was initially frustrated at the lack of opportunity to fight this off but now Ive got a more calm resignation and am just getting on with life (with the support of the fab community on here)
Loran 🌻
I definitely understand why you would be frustrated but glad you are doing better now. As artmakertoo's story demonstrates above, sometimes just waiting and holding off treatment can work too! We're so glad you're part of this community and thank you for commenting on other's posts too. What else would you like to see from the Patient Power community? Certain topics or polls?
I had been getting frequent bouts of bronchitis & pneumonia for many years. I noted numerous times that my lymph nodes were tender. After seeing 5 different Dr.'s who informed me I was just depressed. I was sent to a ENT who told me I had crystalized lymphnodes. Had an ultra sound and was told I had numerous lymphnodes in my neck that were affected. I called my Dr. about the results. He told me to come back in three months. By this time I had lost all faith in my care providers. Made an appointment with two new Otolaryngologists who said it needed to be biopsied immediately. I scheduled the biopsy for the following Tuesday. On Friday as I was backing out of a parking space at the grocery store with our then 12 year old, I am told on speaker phone that I have CLL. A week later a neighbor of mine, who happened to be the girlfriend of my Dr. called me to tell me that my Dr. had told me my lymphnode was huge, that it went on forever! So I hung up on her (she's a nurse and knows full well they broke the law). I then called our kids pediatrician and she gave me the name of the best Dr.'s at Seattle Cancer Care Alliance and moved my care there.
It's still shocking to me I had to go through that to get diagnosed!
That is indeed shocking! Glad that you stuck with your gut feeling until you got to the bottom of it! Hearing that on speakerphone must have been scary for both you and your daughter. How did you both handle it? I know when my mom was diagnosed, it was hard for us at first. How is your care at SCCA now? Undergoing treatment or watch and wait?
My care at SCCA is wonderful, everything you hope in a world class facility. Although I did have one nurse tell me how lucky I was to have CLL (as opposed to something worse), to which I replied, yes there are worse cancers. But never tell any newly diagnosed patient they are lucky to have any kind of cancer. She didn't know me, was unaware of any other health issues I might have and I was 55 at the time. Relatively young for being diagnosed with CLL. I haven't seen this nurse since this particular visit, so perhaps she's moved on.
That's horrible that she said that. I find that often people don't know what to say and so they end up saying something they think is positive or helpful but isn't. As a nurse though, you'd think she would have had training on what to say and what not to say. Glad the rest of your experience has been positive!
wow pdmw .....that is a terrible way to find out your diagnosis- must have caused you great shock and anxiety .... its so bad that you went through that. I hope that your care has drastically improved
Best wishes
Loran 🌻
Thank you Loran. It was very much an anxiety inducing time. Fortunately I have a wonderful husband and two beautiful daughters that keep me going strong. But it's been hard on the girls, they are afraid and a little bit in denial.
By the time I was diagnosed I was told I probably had CLL for at least 5 years. So come September will be my 4th year of knowing but probably my 9th year of having the disease. My closest friends know, and clearly everyone my former neighbor told. I live in a small, gossipy town, so I'm hoping we can move when our youngest heads off to college.
In 2012 I had moved to a new home not far from my previous one and had done the move by myself except for the furniture and it was moved by a moving company. After, I just couldn't get back to feeling normal and had lost weight. I had truly worked very hard for over a month. I made an appointment with my doctor and had a CBC done and on the computer screen my white count showed 11,100 and she thought I might have a slight infection I was trying to fight off. As I looked at the numbers I (me) saw a high and then a low number next to lymphs and neutrophils. I asked why and she said she thought I should see a hematologist. To be very honest, having done medical transcription, I knew that is was leukemia. The hematologist confirmed it. The odd part is, I had kept all my old CBC results and could trace lymphs and neuts being upside down since 2002 even though my white count was still in the normal range, and I had one result in the late 90's where my lymphs were high. That doctor wasn't concerned, but I believe it may have been the start of my CLL. I now keep a folder with all information from doctor visits and tests. This I can take to each six month appointment and to any new doctor I see. Still on Watch & Wait.
Thank you for sharing your story! It's good that you listened to your body and made that appointment! How interesting that you were able to figure out/know what it was because of your past medical transcription and odd about your CLL starting in the late 90s. We've heard of some people have high lymph counts but not being diagnosed until much later.
That is really great that you keep all your information in one place and bring it to each doctor appointment! How are you feeling now? Any advice you would give to a person who was just newly diagnosed and is watch and wait? We have a new member in our community, Carla, who is in that situation! I'm sure she would love to hear your thoughts.
I can trace my lymphs and neuts back to 2002, but I wasn't diagnosed until 2012. Since I felt I knew that I had leukemia (didn't know what kind at that point) on diagnosis the hematology/oncologist said I probably wouldn't need treatment for two years or so and I just put it out of my mind (almost). I went to my six month check ups and each blood draw showed my white count and lymph count getting a little higher. Sometime in 2013, I decided to go for a second opinion at University of California, Chao Cancer Center in Irvine, California. I met a very nice young Indian lady who has become my oncologist. I see her each six months. I'm still on Watch and Wait. As for advice, if you live in a medium size area as I do, find a hematology/oncologist that specializes in CLL. If they don't specialize in CLL, then move on. I had to go outside of my city and state to do this. Carla; I don't know your situation, however, I know that finding out you have a blood cancer is life changing. It's never far from your mind. If you're on Watch and Wait keep your six month appointments. Do fun things. Continue to live your life as normal as you can. Stay busy!! Eat properly, get plenty of sleep, have spirituality, and say 'no' to things you don't want to do. There are new treatment options coming along all the time. I have a lot of hope for myself and you too. . Come to this forum often. It's full of good advice, a lot of stories, and wonderful people. My best to you, Carla. Carole
I see now! Good that you got a second opinion too. Thanks for sharing your advice for Carla- I copy and pasted it to her intro post so she will see it.