CLL Support Association

Year after CLL diagnosis~

After a yr of this CLL diagnosis I am still frustrated with the "wait and see" approach. I understand for older patients waiting but I am 54 and have been an active horseback rider my whole life. Now I have fatigue, muscle and joint pain, which the drs say is not specifically related to CLL. My lumph nodes are starting to swell in my neck but again since they are not huge the dr says "wait & see" even with my WBC increased to 26,000. I would prefer to be aggressive while I'm young and somewhat healthier than to wait till the cancer cells decide to have a party somewhere in my body. It appears that patients with CLL are being diagnosed younger....leaves me wondering why and should we really be waiting to treat ??!! Sorry so long. I don't do well waiting for the other shoe to drop. Anyone out there that is also a carrier of Fragile X Syndrome and diagnosed with CLL ???? Thanks so much💗

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Hi Nettie

61 years old with a 2017 Formal diagnoses and the CLL started in 2014

In my case it did very little between 2014 and 2017 and then became very active for 3 months and then settled down and is stable and it could stay that way for a very long time

The CLL has had many bad affects on my Heath and lifestyle as i have gone from being able to finish 50 mile trail races to struggling to keep working

But as CLL is quite a bit different in each person treatments are not done until necessary as there quite had on you and there is no guarantee that you will go through treatment without some pretty big risks as they are all hard on your immune system and carry a risk of causing other cancers

While there getting closer to a cure there not there yet and as much as i hate waiting i have spent enough time learning about CLL to understand that waiting is a good thing

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Thanks!! for your response!! Did you do 50 mi in endurance horseback rides? That's what I was doing before this. Now it's a great day if I ride around the property.

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I did everything on FOOT with the longest trail event being 52.5 miles i was working my up to finishing a 100 mile event but the CLL has decided other wise and i am just working on making the best of my current status and finding other ways to enjoy life

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My honest advise is do the W&W until it is no longer possible. If I could go back i would probably do watch and wait. this was not an option for me since the number of enlarged lymph nodes in stomach were too many so treatment had to be started but drugs are extremely hard so your side effects might be even worse thar what you endure now. i was diagnosed with Sjogren's, Lupus, RA and Fybromyalgia after Chemo i have learned to live with pain. i had nothing before Chemo browse thru the forums people end up with neutropenia, severe fatigue, joint pain aparently unrelated to drugs ( so say all doctors) but almost anyone can tell you that they did not had these symptoms before so dont worry about waiting that is excelent news when it absolutely becomes neccesary then you will have to take action but dont take anything that your body does not need now . Good luck!!

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Hi Nettie,

I too am a carrier of Fragile X along with two of my siblings. My sister's son has Fragile X syndrome.

I was diagnosed 2.5 years ago at the age of 49 with CLL. I am the only sibling who has CLL.

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My husband was the same age as you and was on watch and wait for 18yrs and enjoyed a normal active life.He had the odd hic up but nothing major, we consider him one of the lucky ones.

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It must be so frustrating for you especially having so much less energy. My husband, age 57 diagnosed 3 years ago has had to adjust to a new normal of LOTS of rest, eating healthy, and generally taking good care of himself. He still does what he loves to do but takes joy in doing those things in smaller chunks. W & W may be frustrating but please do enjoy life without treatment. The alternative we have found is hard - chemo, side effects from various drugs and that is so we can be relieved when he is back in remission. May God bless you with many fulfilling years of good health!

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I am frustrated with the watching and waiting too. The fatigue is the worse. But every month that goes by without needing treatment is a month closer to being able to know more about the most effective medications for your subtype of CLL.

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I had fatigue really bad and I know people do. For me eating better, losing weight, and exercise helped tremendously. Keep a positive outlook.

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Many of us here have been on watch & wait for several years. You are stuck with this disease and just diagnosed a year ago and only 26,000 WBC, you are most likely good for years to come. If you have to get leukemia, this is the one to get. This isn't like a regular cancer where you go in and do surgery, chemo, radiation immediately. It is watch & wait to see when you're ready which your doctor will tell you. Now go live your life and stay active.

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I have a thought. Are any of you in need of losing weight? I've always been a slender girl and woman, but five months ago I stepped on the scale at 150 and said, 'that's enough'. I have lost 15 pounds since then by eating properly, smaller portions (it an be done), and EXERCISE! I run the treadmill almost every day at our gym, I walked the trail near my home, and I've ordered a mountain bike to ride the trails further. If you are heavy, take off some of that weight. Since I did I have so much more energy and with my exercise I can get up at 6 am and not go to bed till 9:30 with no naps. My WBC is 94,000 and my red count is below low normal. Still on W&W.

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