Posting on behalf of my partner 41yo female who has just been diagnosed by GP via a random blood test with CLL. Doctor doesn't know a lot about it and we are waiting on a haemotologist appointment in next couple of weeks.
Have read a lot in past few weeks and gotten over the initial shock but want to understand as much as possible. This place seems to be the most balanced place to be
Saw questions being asked here to other new patients about the wbc which is 13.9 and lymphchytes at 10.86.
Thanks for reading and congratulations on the community and good will that jumps off the page when you land here for the first time in the horror of shocking bad news.
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NewCll
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Thank you for posting on behalf of your partner, it is also very helpful if you are able to go to some appointments with her. So easy to go completely white coat and forget all the questions. Perhaps an update just before appointment to check what questions to ask.
Once you have both got over the shock try to relax and put to the back of your minds. I have been around since 2007 with this diagnosis.
GP’s try but I know that for years I was the only patient in a large London practice with CLL so sadly don’t expect too much but do make it very clear to her GP that she is immune compromised. I spent several years being told to go away because an infection would go away.
There is an excellent pinned post on the right by PaulaS which gives great advice, especially on all vaccines, and the correct order to get Pneumonia vaccines.
Good for you for writing in early As above, it takes a year or more to adapt to this news..If you avoid out of date Google information and stay with reputable support sites like this one that you found you both will learn a lot about this manageable disease. Think diabetes for example.
My wife and I read HU every morning together with coffee on our respective iPads.
It feels very important to me that she learns just as much as I do so that we can discuss the complexities and go through this together. You learn a lot of current science here but also you learn how we do emotionally to the ups and downs and how much support from knowledgeable peers helps.
NewCll, very happy you posted here. This is the best place to know what is going on and ways to handle it. mrsjsmith, suggested you attend appointments with her, that is really important to do. My husband came with me the first year. He needed to hear the doctor as much as me. Research now is moving amazingly fast with better treatments. I'm in W&W(watch&wait) going on 3 years. I'm 73 and feel really good. I am careful to wear a mask in crowds still. I want to avoid colds, sinuses and all the other humbug viruses out there. Be happy with the doctor, if not, CHANGE! Stress is a big enemy for us and I have my ways to calm myself. You two will discover ways for those times. God bless you. You have shown me you have the positive outlook to gather info and make the best decisions for you both. 🙂 Sandra
Thanks everybody. Seems we won't have an appointment for a while as we are stage zero. Ive been told to get all blood work and understand her situation better. Is there anything to be gleamed from the figures above wbc etc or am I getting into dangerous territory asking for medical insight here?
Let’s just say my wbc was around 150 when I started treatment, but everyone is different and exhaustion is sometimes the first sign, it was with me.Just make sure she keeps her general health and fitness up and check the pinned posts about vaccinations. And go armed with the recommendations from the Green book because practice nurses don’t like being told and I and others here had trouble getting Pneumonia vaccines in the correct order.
Welcome and sorry it's under not optimal overall life circumstances. Until further testing is done, it's impossible to begin to comment a lot. In addition, even with a series of further testing, "how the labwork changes" over time also impacts medical decisions. This is a time to do some learning, reading the Pinned Posts section as well as sites like cllsociety.org and lls.org. I will mention that if anything "serious" seems to be going on, the docs will be acting swiftly. At the time of my diagnosis in 2011, things were going on that made it appear I initially had an acute leukemia. With the CLL diagnosis, the doc was still concerned based on how the blood slides looked, and asked for more intensive testing, So my opinion is, if something potentially life-threatening or critical is going on, you would know.
I'll also say, it appears the CLL diagnosis hasn't been confirmed since you haven't yet seen a hematologist for testing that would confirm?. And that as an example, my initial bloodwork came back on a Monday and I was seeing a hematologist that Friday. So whatever is going on, CLL or another blood problem, it's not looking immediately serious or you would be seen much sooner. Knowing where you are geographically (UK, Aus, US, other country) will let people specific to those areas help you navigate this, So partially filling out your profile will help us, help you.
We have a pinned post section here: healthunlocked.com/cllsuppo... where we've collected answers to commonly asked questions from those newly diagnosed. This post healthunlocked.com/cllsuppo... in particular hopefully covers or references most of what you'll both be wondering. Take your time working through the post and references. There's no rush with a stage 0 diagnosis or even stage 4. I lasted 11 years in stage 4 after my diagnosis over 13 years ago. You can of course also ask for specifics not covered.
With respect to your partner's white blood counts, the lymphocyte count is the one to track, as it includes CLL cells along with healthy B T and natural killer cells. The rest of the WBC contains another 4 types of white blood cells which fight infections. The most populous and very important are the neutrophils, which primarily protect against bacterial infections, as well as fungal and viral infections. As CLL progresses it tends to infiltrate the bone marrow, so these other white blood cell counts as well as haemoglobin and platelet counts tend to drop down to levels which, if low enough, trigger the need for treatment. There are spreadsheet templates available to help you learn about the role and importance of different blood cell types if you are interested.
(Added later: A lymphocyte count of 11 is low for CLL. The highest CLL lymphocyte count I know of was 1,400 and we have members in watch and wait with counts of several hundred. CLL cells are small, so rarely cause problems. It's when they double in under 6 months after they've passed 30 that specialists look for other indicators to see if treatment may be needed.)
Median diagnosis age for CLL IS around 70, but we have members in their 20s. While your partner has been diagnosed younger than most of us, thankfully, treatments have hugely improved over the last 5 to 10 years, so we are approaching achieving normal life expectancy with this chronic blood disease.
As mentioned earlier, it's important (for both of you) to get up to date with vaccinations while your partner's immune system is still working reasonably well.
Those numbers are still low in CLL terms. Relax, no imminent danger. You will have enough time to get acquainted with the condition thoroughly before you need all the knowledge. I recommend to read Cajunjeff's series for dummies. Very good explanation of what this is about.
There is a Pinned Post intended for you and your partner- it has lots of information and will take many sessions for you both to digest all the wisdom, but please keep coming back to it and reading all the links. It will help you significantly- see: healthunlocked.com/cllsuppo...
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Since your partner is very young for CLL, you may find several discussions here that are useful: healthunlocked.com/cllsuppo...
SNIP: We have had several under 40 members and even some mothers to be here.
Some of the members that I recall in the under 40 category are below. By clicking on the links to their profiles you can read their postings and replies.
I hope you are able to find a CLL specialist within a year for your partner. It is helpful to have regular consultations with them even if your partner is in Stage zero. None of your questions are unimportant and it does take some time to adjust, for both of you.
When I was in Stage 0, the focus was in getting vaccinations, as others have noted. It is important to do them now because your partner’s immune system is still more-or-less functional and it is best to avoid getting sick from here-on-out.
Exercise is also recommended for your partner. Your support in however your partner wishes to exercise is very important. Exercise helps the T cells, which is one component of our immune systems. In general, exercise is good for almost all bodily functions.
To provide some perspective, I was diagnosed 5 years ago and am still on watch and wait. I am much older (now 70). My WBC started at 13 and is now at 165. I started seeing the CLL specialist once a year; now it’s once every two months. I expect to start treatment this year.
The Watch and Wait period can be filled with worry and anxiety. I have found that letting my CLL consultant worry for me is very effective.
I still go on bike rides regularly and hike on days when I don’t go for a ride, weather permitting of course. I find the more I exercise, the better I feel.
It will be important as well to keep up with other regular appointments, such as an annual or bi-annual skin check, and appropriate gender related exams. Having CLL does raise the risk of other cancers.
Covid changed CLL for me from a vague nuisance to a serious threat. I am still wary of Covid and limit my interactions with others.
This group is a great source of information and support. Another good place to find information is the CLL Society. They have a glossary of medical terms related to CLL which I found very helpful, especially when I was new to CLL. They also have lots of information and updates on medications and other topics related to CLL.
Hi and welcome. Nothing to add to the great advice already given, lovely that you’re clearly fully supporting your partner in this. The best thing for me was finding a CLL specialist and assigned to a specialist nurse. Any niggling questions answered quickly which stopped me worrying.Peggy ( 7 years watch and wait). UK.
Had the first appointment with top cll consultant here who was very reassuring and talked us off the ledge.
Said we were at stage A (perhaps same as stage zero) and that one third of patients with our situation don't need treatment at all but the * on that was it was mostly related to 70+.
Talked us through the other risks of cancer especially skin cancer and we are seeing a dermatology consultant next to get best advice and keep regular watch.
Covid and immune system worried were explained but not catastrophised. She will continue working in her office where they take mask wearing seriously and we will just be much more vigilant.
It has reassured us a lot but I wonder are we too reassured. Easier to get shocked about diagnosis than reassured that it might not be active for a long time.
Wonder if you guys have actively told people much or is it too confusing at such an early stage?
Wonder also did many of you get second opinions, we have a lot of faith in this consultant but if this was a quote for new windows we'd go to a few places etc etc
As you say your partners consultant is a CLL specialist I would now try to stop worrying and perhaps only looking for a second opinion if/when treatment lurks. As you would wait until your windows needed replacing.
Get all vaccines sorted out as she is now eligible for up to 5 vaccines, but some people have had problems which stems from incorrect coding at GP’s surgery so check that out.
I made the mistake of telling everyone, but that is a very personal decision.
I am assuming at the speed of a consultation you have private medical insurance so you are lucky to get to see a dermatologist quickly and she should be getting a body scan. Stay out of sun and lots of a high factor lotion.
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