CLL leukemia: Just diagnosed, what can be done?

Hello,

I would like to discuss further and am very pleased w/ your results! I'm at work now,, so can't chat much & recently diagnosed, 8/22, stage "0", no symptoms, it was caught as WBC peaked at 19000, Hematologist Appt tomorrow. Eating Cabbage daily, 7,000 steps daily, trying to incorporate Tumeric/ Curcumin & Green Tea in diet, as bought EGCG sublingual and Tumeric supplements, (but doing a deep dive on research & would like, may not get Dr' blessings on taking). We'll talk. TY, and keep, keeping on......

Hi,

I just found this group and I like what I'm reading/seeing (as opposed to the International group, abbreviated as Health U.....) I'm new to this, (diagnosed 8/22, w & w, stage 0, and doing my best for right now by eating good & exercising daily. Would you please elaborate of getting connected with a CLL specialist, and how I would do that with Mayo Clinic? Previously I found that there's several CLL specialists in Texas, with the closest ones are in Dallas, (30 mi). Do most CLL patients have a regular hematologist / oncologist and also a CLL specialist? Thanks for the info...

Hi @skycountry, welcome to Mayo Connect. I’m happy you found us. We have quite a few members with CLL and they’ll be happy to offer their support and information. I’m guessing you’ve read through some of their stories already. CLL is generally slow to develop. People can go years without treatment.

If you’d like to request an appointment with one of the Mayo Clinic Campuses in Rochester, Phoenix or Jacksonville here is the link to contact the campus of your choice to initiate a visit. http://mayocl.in/1mtmR63

If you live in Texas and are near MD Anderson that would be another top tier cancer center you may want to try.

Most Hematologist/Oncologists are familiar with CLL and I’m not sure you need to have a another specialist. A hematologist oncologist is a specialist in blood cancers. There are some who do direct most of their research to the area. However, since this is slow to develop it gives you time to find a doctor you feel comfortable working with and trust.A second opinion is never a wasted trip.

How’s your current hematologist? Are you feeling satisfied or needing maybe a little more reassurance that you’re doing the right things at this time?

I can’t speak for “most” CLL patients. I use a specialist at Mayo exclusively for my blood issues. I’m sure many use a local hematologist and use a cancer center for a second opinion. To find experts go to cllsociety.org/newly-diagnosed/CLl-doctors/
There you can find all in your area. Specifically for Mayo, call 507-284-5363 or check Mayo website.

Thank you Lori. Good to know and I felt that way already about possibly not needing a specialist. I let the first Hematologist/Oncologist go after two visits and I got the diagnosis, because I really didn't like him and too gloom and doom. I do like my new doctor, as I selected one that was of Indian descent. I'm out walking the dog, so I'm going to run but didn't want to let too much time pass before replying. TY, ppl on this support site seem very down to earth and I like that. Last thing, your username makes me miss going up to see our land and friends in the Bitterroot Valley of Western Montana. One day I would love to visit the Mayo Clinic campus, as I was so impressed by watching that Netflix documentary on Mayo Clinic and all the history involved. Good stuff....

My husband and I were also totally caught off guard by his diagnosis! We are both 72. We both just had routine bloodwork done at our yearly physical by our primary care physician last August at Mass General Hospital in Boston and my husband’s blood work came back as showing CLL! We were floored!!! The primary sent him to a specialist at MGH who only deals with this diagnosis. He has been very nice and staying on top of things for my husband. We have had two visits so far and he continues to be labeled at *0*. We will go in again in March for more bloodwork. From what was explained to us, this is a slow growing leukemia in older people and it may stay a *0* for a long time. I guess that they have very good treatments for it if the blood numbers give them concern. This was all news to us with this diagnosis. Wishing you all the best. Be sure to ask all of the questions that you need to ask! MaryAnn from Boston

Do you have any symptoms with your CLL? I was wondering because I am confused. You stated you are doing well for 5 years...so you don't have any symptoms?
I was recently diagnosed with CLL and my lymphocytes are only 7500 but I am soooo tired and I get rashes and headaches, bruises too. How can this be when most of complete blood counts are fine?

Hello I was diagnosed 3.5 years ago. I also get bruises easily and rashes when my skin is dry. My counts are also ok.

I have just got the diagnosis CLL/SLL and i have no symptoms other than swollen lymph nodes found Dec/22; feeling fine nothing else; had a CT scan Tuesday waiting for all results March 10; so confusing how some get symptoms and some dont; so confusing

Hi @tatayababa, I can feel your anxiety growing so I hope I can help you out a little.
It really is confusing as to why some people with the same blood cancer can have symptoms while others feel nothing. A lot depends on the progression of the disease. CLL/SLL are essential the same disease with the primary location of most of the leukemic cells being the difference…either in the blood/lymph nodes or in the bone marrow. It is generally very slow to progress over years and often found randomly with a routine exam/blood work appointment.

Blood cancers start in the marrow when something triggers the immune system to run amuck with an overproduction of one portion of the blood product, whether it’s red or white blood cells, plasma or platelets. When disease is early, there may be no symptoms at all because the impact is small.
With a blood cancer there are no tumors but lymph glands can become enlarged, causing discomfort. There can be pain in joints and bones as the overabundance of blood cells crowd out the cramped chambers inside the marrow…eventually spilling out into the blood stream. Organs can become affected such as the spleen causing pain. There can be fevers, exhaustion, night sweats, etc, as the leukemic cells over take the normal production of red blood cells which carry oxygen through our body and the immune system responds to the inflammation. But again, not everyone feels any or all of these symptoms depending on the slow progression of the disease.
Not sure if I’ve given you this article previously but it’s very well done in explaining CLL/SLL
https://www.healthline.com/health/cll/chronic-lymphocytic-leukemia-symptoms
I know this is all new to you and frightening. But you have no symptoms so you are most likely very early in the game and this is a treatable condition. This isn’t the end of your story! I encourage you not to compare yourself with anyone else’s experience because every single person is different. It’s great to connect with other people with the same disease but as you’ve already seen, no two stories are the same, even with the same diagnosis.
I went through the same thing with my AML…I’ve met many people over the past 4 years with AML and only 2 have had my exact mutations and symptoms. We have to be really cautious to not speculate on those pesky what-ifs. Because most of the time what we conjure up is worse than the reality. ☺️
March 10th feels like a long way off…2 weeks from today… you’re going to get through each day because nothing has changed! You’ve had this condition for some time already…you’re just waiting for a few more answers to the puzzle. Finding the answer is a good thing! It’s the waiting that’s hard!
Are you in the heavy snow belt or are you out enjoying so fresh spring air somewhere?