New To CLL and I had Covid in March 2020. - CLL Support

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New To CLL and I had Covid in March 2020.

Kd116 profile image

Hello, I'm 49 and I was diagnosed with CLL in November of this year. It's been quite a year. Both myself and husband got covid in March, his case was mild but mine was severe. I had bilateral pneumonia and acute respiratory failure, I was put on high flow oxygen and after that failed to work I was placed on a ventilator for 10 days. I recovered without any damage to my lungs. I think it's really important to note that none of the new protocols for covid existed when I was ill in March, I was hydroxychlroquine which we know now doesn't work against covid. I felt pretty good as I recovered and took it easy this summer but was pretty sad to find that I had CLL during a routine physical. I kept thinking is 2020 trying to kill me? What on earth have I done that it feels like I cant get a break? I have a CLL specialist and they believe my immune system is working pretty good, I'm at stage 1 due to mildly enlarged lymph nodes in my neck. My WBC is still pretty low as well as lymph count. Looking back I've had a lot of sinus/ear infections that I've always thought are a result of my flying career. I also have had bronchitis and a very mild case of shingles within a 5 year span, so the shoe fits with how CLL likes to work against our immune systems. I'm hoping you can give me advice or share experiences on how you live with CLL but it's all still pretty scary. Thank you for reading.

10 Replies

Sorry you have to join our group, but welcome! Hearing the word "cancer" is extremely stressful since traditionally any cancer has been a quick killer. Depending on your test results, you potentially could go years (some people decades!) before needing treatment, if ever. And the newer treatments for CLL make some forms of it more like managing a chronic disease state like diabetes in my opinion; there are things you will have to adjust to (like, maybe no more 60 hour workweeks because its too much stress) but it can be managed. Please put in your profile more information as you obtain it from your docs. As you read through our posts, we discuss things like "17p del" or "13q del" or "unmutated" or "W&W" which is short for the docs saying a Watch & Wait period but often feels like Watch & Worry.When I joined, I scrolled through posts & read responses to see how others with similar genetics to me were dealing with things & doing. Since there is such a wide variation in CLL, you really need to educate yourself to what Your particular markers/test results are. For example, you can say "I have an infection" but then questions like "where is it? Bacterial, viral, protozoal? What are symptoms? would arise. Just saying "CLL" is sort of the same, Don't read Goggle stuff unless you know how to search for & interpret information from valid medical sites, there's a lot of nonsense out on the 'Net. This site has plenty of links to good information. I started with the Pinned Posts on the far right side of the site, it's good basic information.

Welcome to this Amazing Group! Wow, you’ve really been put thru the wringer!😔I wish you all the very best for 2021!

Although I’m at stage 0, I’ve found this site invaluable! ❤️🌟❤️

Hello KD and welcome to the forum. I wrote my thoughts about what I wish I knew at diagnosis in this post:

healthunlocked.com/cllsuppo...

Hope it helps.

cllady01 profile image
cllady01Volunteer

Welcome, KD--and here is some more reading for you in regard to being new to CLL and to this site. It is a lot, but you can read at you leisure and please feel free to ask us questions. We don't know everything, but endeavor to find links for what we do not know.

healthunlocked.com/cllsuppo...

I hope you and your husband are feeling well. Being new to CLL is a worrisome time, but many of us were diagnosed when we were not aware at all of having anything wrong. Some of us have lasted for many years with no treatment.

Hi, it's not only you. 2020 has been terrible for many, people dying en masse, loosing livelihoods etc. Any one of us is just one of the 7+ billion walking the face of the earth. I sometimes wonder how many will die today. How many will get a cancer diagnosis. Tens of thousands at least. So we are all in this together and not in a good way. Lots of people who are younger and more healthy than us will check out much sooner than us. Billions of years behind us, billions ahead of us. What's a lifetime in comparison? This stretch on earth is nothing. But I'm getting philosophical. Sorry about that.

Phil4-13 profile image
Phil4-13 in reply to LeoPa

Each day is important to me and what happened “billions” of years before me or after me has no power in my day today. So in spite of CLL ( where did I ever get that?) and how this current poor economy has “infected” my budget, I will see in the good in today, no matter how simple. My “stretch” on earth is active and important.

Well, that is the philosophy I work at practicing. Enjoy what you can, prioritise any problems and ignore the rest! Sandra🎶😊🎶

LeoPa profile image
LeoPa in reply to Phil4-13

Hi Sandra, that's a good approach everybody can safely follow 😊 and I try too..Nevertheless its helpful to see the big picture as well. What happens after we complete our stretch here is just as important than during. Even more, because that's somewhat longer 😉

Hello Kd116

You have had a rough time, hope you have some joy from Christmas. You need not worry about the stage 1. I was stage 0-1 up until I had treatment, does not mean much. Merry Christmas.

I’m so very sorry you had to join this group and that you had CV too. I was older than you, 51, when my oncologist stated my CV started but I wasn’t diagnosed for 5 years (and 6 Dr.’s later). It is hard to receive the news, very hard, especially at a young age. I can only tell you from my own experience 8 years since diagnosis (I’ve had it for about 13), that if your numbers are good and you’re stage 1, you just live your life.... taking more care of your health of course, but you just go on living. I was stage 3 at diagnosis but my numbers are holding steady. I started eating better and I ride a stationary bike everyday, and I’ve lost the extra weight I had been carrying. Three years ago as our youngest was packing for college, I decided to start painting, something I’d never done before. Painting has become a refuge and more. I know not everyone wants to paint but I encourage you to find something that fills your soul and just keep living. I’m still “watch and wait” and I plan to stay that way for decades to come.

Hi, My advice is to live your life. If you feel well do the things you always wanted to do.Unfortunately covid has stopped us doing that but hopefully there will be a time.

I have had cll for 20 years. I was 43 when diagnosed. I have been treated and now take ibrutinib which quickly brought my blood count down to normal.

Before starting this drug I had fatigue. There are new drugs and things have improved dramatically in the last few years.

Let the doctors do the monitoring and do what your body is telling you to do. Dont let the diagnosis take over your life. Dont tell everyone because it might be years before you need treatment. Take care, you will feel better when it sinks in. Anne uk

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