I was just diagnosed 2 weeks ago with CLL. My lymphocytes are 7000 and I have a couple of enlarged lymph nodes. I am waiting for the results regarding if I have the aggressive kind or not. Right now I am wait and watch. The Dr. said "Live you life, this shouldn't impact your life".
Does that mean I can go on with other medical care as always? I need to see a pain management Dr. for arthritis pain who may do injections. I may need a root canal soon. It seems like any assault to my immune system could trigger progression of my CLL. Am I considered immunosuppressed at this point?
Do we as CLL need to avoid invasive medical procedures? Infections?
What about hair dye and finger nail polish? Do we need to avoid chemicals like that?...
Thanks, Sophie
I’ve combined your addendum with this post Sophie and deleted the second post to avoid duplication.
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sophia60
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First of all, CLL does impact your life...if not physically right away, it does so mentally. My first suggestion would be to find a CLL specialist if you can. They only deal with CLL and can guide you during the watch and wait period and "if" you ever need treatment. Plus they have so much more access to new treatments. They can work with your local doctor. Based on your low count, you are most likely at early stage. The landscape of CLL treatments are changing rapidly and sooner rather than later, CLL should be a manageable and controlled disease where many people who are newly diagnosed can expect normal life-expectancies.
That being said, you need to let doctors / dentists know of your CLL. For dental procedures, your dentist can give you antibiotics prior to invasive procedures to reduce the risk of infections. I think you can continue seeing doctor for the pain management. You should always ask your hematologist for guidance on this.
As far as avoiding invasive procedures, no you don't need to avoid ones that are necessary. You just need to be up front and proactive with all of your care team. (doctors, dentists, etc) . Since people with CLL are at risk for developing secondary cancers, seeing a dermatologist for skin checks yearly, colonoscopy every 3-5 years and seeing your "lady doctor" regularly is important. As always, let your specialist guide you if you can get one or at least a knowledgeable hematologist.
Welcome and feel free to ask any questions here. Many knowledgable and caring people on this site.
Thanks for the reply. I do have an appointment with Dr. Byrd at The James but it is not until July. Until then, it is my local hematologist. So, I'm not sure how far to trust my local one. I just don't want to make the wrong move right now during this time. Understand?
Totally understand! July is some ways off. I would investigate and see if you can get in sooner to see Dr. Byrd. Perhaps see if your hematologist can give you a referral and speed up the process. Forgot to mention to get the two pneumonia vaccines. Prevnar 13 and pneumovax. You only do the prevnar once and the pneumovax every 5 years. My specialist at MDA also suggested I get the new non-live shingles vaccine..shingrex.
I have not needed treatment. Diagnosed in 2016. Specialist looked at old blood tests and confirmed it most likely began in 2012.
You are in shock now but CLL is usually a slow grower. You are in the right place for info and camaraderie.
Are you seeking a second opinion or care of a CLL expert? I HIGHLY advise that. Are you immunosuppresed? Probably just by having CLL. So being in the early stages, go get all your NON-LIVE vaccines. Go to the dermatologist, get your colonoscopy done now.
Anxiety is normal but try to live life and don’t waste this time worrying about tomorrow. It won’t change tomorrow but just rob you of today.
Jeff thank you for the reply. I have an appointment with Dr. Byrd at The James but it is not until July. Until then, it is just the local hematologist. Therefore, I feel like I want to verify her answers on here until I can get to Dr. Byrd.
I see Dr. Byrd, who is not only a rockstar, but humble and nice. Worth the wait. I still dye my hair and nails. And drinking wine. And consuming dessert. The only restriction I have is consumption of food that interacts with the meds I'm on.
Welcome to the group. I'm glad you found us so soon after your diagnosis.
Sadly, even in early stages of CLL, we are somewhat immuno-compromised, but it's very variable. It's always best to avoid invasive medical procedures if we can, but sometimes they are necessary and aren't usually a problem. Always tell any doctor or dentist that you have CLL, and they can take extra precautions to avoid infections.
i don't think nail polish would be a problem, and most modern hair dyes are much safer than they used to be. Other folk might have more ideas about that than I do.
As a newcomer to CLL, you might like to read this article - a list of “29 Things we can Do to help our journey with CLL".
It’s a collection of useful points that have been made on this forum over several years, so is very much a joint effort from everyone here.
These are not complicated medical things – they are relatively simple things that we can do ourselves. Not everything will be relevant to you, as we’re all very different, but I hope you'll find some useful points there.
Hi Sophia. Welcome to the group. The main thing to pay attention to regarding infection risk with your CLL is your Absolute Neutrophil Count (ANC) on your lab work. If that falls below normal (as it can with CLL for some of us), then you are at heightened infection risk. And if it falls below 0.5, then you are considered severely neutropenic. But anything below 2.0 is neutropenic. There are lists of neutropenic protocols to follow about foods to avoid, and activities to avoid when you are neutropenic.
You will want to obtain and keep hard copies of all your lab work. If you aren't already. Because of the nature of this illness,a person may go years (or even forever) without treatment, but will need to be tracking/monitoring their own blood work all that time.
i totally understand what you go through, when we got to know about my mother 4 months ago, we were shattered but with time, we have come to terms with it.
CLL is a slow grower, get your medical examinations done, trust your doctor and do as he says.
this has been a great group for me to get off the fear of loosing my mom, but our doctor says that today, even or when my mother would require treatment it would be as simple as just taking a pill. so there is nothing to be worried about as it can be controlled and progression can be controlled. just make sure you dont eat cold veggies and stay safe from very cold weather.
Sophia, "welcome" to the "club," a club no one wants to join, but one that offers this great resource of information and community. You're making the right moves, seeking a CLL specialist and asking questions.
I was 52 when I was diagnoses in 2013. My doc (CLL specialist) said "No need to worry. We have you on the 40-year plan." Now, that 40 years could include a 6-10 year hiatus from all medications after the clinical trial I'm on is over. That would already count for up to 15 of those 40 years. Then, maybe a bridge drug or two until some new treatment that comes out gives me the rest of the 40. Remember, the first letter in "CLL" stands for "chronic". Yes, it sucks. No one wants this, but at 60, you still have a lot of life in front of you. I'm guessing Dr. James will say "Live it!"
This question "Am I immune-compromised" vexed me for years. My CLL doc said "No, you are not" for nearly all of the five years I spent on watch and wait (Truly not "watch and worry" in my case, for what was I to do? I was seeing one of the best and taking care of my health in other ways, so all I could do was just live.). I live in a small city in Upstate, NY. We moved here two years ago. I selected a GP recommend by a lot of people who's opinions I trust. One of the first things she said to me was "CLL? You basically have no immune system!" I went to a local Urgent Care for an ear infection and the doc there said that "having CLL was basically like having the immune system of someone with HIV."
Wow
Meanwhile, the only time my doc told me my immune system was somehow weakened to the point of needing to take extra precautions like wiping down setbacks and armrests on flights was about a month before I needed treatment. That's when my WBC count climbed and my neutrophils and IgG started to drop. When it comes to stuff like this, let the doc you trust answer this question, not me, not local docs, not anyone here. We can always provide our perspectives, but if you've found a good CLL specialist, and stay informed with the right questions from here (and possible guidance in the form of responses you get here), then you can verify it all with the doc.
Oddly, I have had fewer colds, infections, etc since diagnosis that at any other time in my life. The only strange thing is that I've vomited twice in five years, which is odd for me. Last time that happened was from obvious food poisoning 20 years prior.
Technically speaking, my understanding is that our immune systems are not "squeaky clean" like they might be without CLL, but there's a lot of redundancy built into our immunity. As a species, we've survived millions of years because our bodies have multiple ways of fending off attackers. Take heart! You and your immune system are strong! You are the product of survivors!
Having said all this, I agree 100%. Inform every provider about your CLL diagnosis before you might need any care. As has been said, dentists and others can use antibiotics prophylactically. The biggest concern with other medical treatment is if/when you are on some sort of treatment for your CLL (which could be far down the road, if ever). Some of the newer, non-chemo, drugs can increase bleeding risk, so we have to coordinate surgeries with brief hiatuses from the meds.
Hi Sophia. I was diagnosed in November and have had many of your same questions. I did start trying to do things a little safer as far as cosmetics, etc. there is a hair dye called Inoa which is a bit safer in terms of less chemicals and I used that recently with great results. If you want totally chemical free there aren’t a ton of options although they do sell hair dye that is “safer” even than Inoa. A Google search of organic hair dye reviews will turn up some info on products you can get at natural stores like vitamin cottage. The reality is, though, changing our hair color requires some kind of checmical reaction so it’s likely nothing is 100% safe.
I also started polishing my nails less and when I do I have been using Zoya brand which is supposed to contain fewer chemicals. I found some others with even fewer chemicals online but have not tried any of those as of yet.
I understand how you feel with everything we do and put into our bodies suddenly requiring a lot more thought. That coupled with all of the other worries that go along with this can be maddening. I would say, don’t try to overhaul everything at once but try to control the things you can as much as possible.
Best of luck to you and wishing you health and a long uneventful experience with CLL.
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