CLL - Blood work Completed IGVA Mutation Analysis

@joeeduffy I want to reach through this computer and give you a hug…
My goal is to calm you and help you see that this is not a death sentence for your husband. Yes, CLL is a type of blood cancer but it is not generally aggressive and people can live full and happy lives. The survival rate for people with CLL is better than for many other types of cancers…and it’s treatable. I think this will be helpful article for you to read about the prognosis of CLL patients.
https://www.verywellhealth.com/cll-prognosis-5211991

The test results that you’ve received so far should only be interpreted by your husband’s doctor for Joe’s personal situation. Comparing to someone else’s results won’t necessarily apply to your husband as they are relative to his situation.
The bone marrow biopsy results may take a week or more to be reported in its entirety. There are many components to the tests and they take time. They will come back in the portal under their own results. It may say Cytology/pathology report. My suggestion for you, as someone who’s had 13 of these, is to not look beforehand unless you know exactly what the results mean. It’s easy to misinterpret what you read and right now you’re already overwhelmed and filled with anxiety.

You mentioned trying to find local support groups. Here are two sites for you to research to see if there are any support groups in your area. The Leukemia Lymphoma Society usually has local branches. I know at my hematology office there’s a large white-board with all the information with monthly meetings at a local technical college.
https://www.lls.org/
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https://cllsociety.org/

My heart goes out to you because I can sense how desperate you are to find help and answers. You are absolutely not a failure, my dear. You love your husband and you want to make sure he’s going to be ok. This diagnosis is all so new and raw right now. But I’m expecting nothing has changed drastically except your attitudes since your husband was diagnosed, right? He wasn’t having symptoms. He’s still not. This was found in routine blood work.

This isn’t a rapidly changing life for either of you right now. It’s the same as it was last month except for the changes he’s making deliberately with stopping smoking and trying to eat healthier.
I’m trying to put this into perspective for you that life may not change much. There might not be any treatments for a long time and those are usually just a medication to take. I know you’re worried how this will impact you financially and that your husband is worried if he passes away and you’ll be left alone. All of these are wake up calls for any married couple. We have to plan for the future and every eventuality. But right now, as for his future with CLL, this level of stress and worry is premature…just please, take a few deep breaths and exhale slowly. It’s ok to cry, but try to remain calm and focus on things over which you do have some control. I think you’ll find this is all manageable. The best thing is to wait and see what the hematologist has to say on the 29th.

How is the new diet plan working out? Have you found some good recipes that follow the Mediterranean Diet?

Rest assured your doctor will interpret everything so you can understand it. Just know that it’s generally better for CLL patients to have some mutation percentage than to be unmutated. So it’s actually a good thing.

@loribmt Hi, your response to @joeeduffy is so encouraging. I was recently diagnosed with CLL. It was picked up on routine bloodwork. I, too, don’t have any symptoms. It has caused me a lot of anxiety but your response to @joeeduffy has helped me. It’s all so new and we all think the worst when we get the diagnosis! My Hematologist was very encouraging also. I see him again on March 19. I’m still not having symptoms so hoping everything remains the same. Thanks for providing such positive information 💕

Hi @marynoelle. I truly know feelings that come from a diagnosis with leukemia. We fear the worst! I think it’s just human nature to get in our heads with dire thoughts! But so often our worst fears are unfounded.

I’m so happy I was able to give you some encouragement with your new diagnosis of CLL. You may not have any symptoms for a long time and this is often a very treatable type of leukemia. So your doctor will monitor your blood work every couple of months for a while until you have a baseline of results. Doctors look for trends in blood result numbers. So if you’re not having many changes in your blood work at 2 or 3 month intervals, sometimes the doctor will change the frequency to 6, 9 or 12 month intervals.

You’re in a big family here in Connect. We’re all here to help support each other with encouragement and hope! I’m so glad you’re here us! ☺️

My husband was diagnosed with CLL more than ten years ago. We are facing a secondary cancer now 😞 but I joined an online international community (CLL support group on Health Unlocked). Many wise wonderful folks there that share information and links to international research. Be of good courage, I wish you well.

Lori! I want you to reach out through this computer and give me a hug as well! And, I want to do the same and hug you back. What a wonderful thing that you are doing helping guide us through these times. They are hard and I hope that you had the love and support that you and the rest of everyone here is giving when you were going through the beginning stages of your diagnosis.

The diet has not yet come full circle but we are definitely creating some great things to keep us healthy and we really aren't 'that bad' diet wise. And, I have to say that since this (and GOD knows I have been trying for a very long time before this diagnosis) has happened, Tim is now on Day NINE smoke free and I have not seen any Wawa gross sizzly breakfast sandwich remains or beef jerky packages in his car either!

We are going to Charleston for his birthday (2/16) and to see friends and family. So that will be really nice. That Saturday we are all going to the Dueling Piano's and that will be alot of fun! We have more friends and family there then here in Virginia Beach and were planning to move there in the next year or so. So, that is our plan that we are still holding on to.

It is very tough here. We have not made many 'friends' over the past 14 years that we have been here and we will need to be closer to those we love whether it is sooner or 40 years from now that we have to worry.

In the meanwhile, you guys here are keeping me on the up and up and I am trying my best.

BTW, Tim is my husband and I am Joee, his wife. It is confusing if you don't know!! LOL

Hi Joee! I love your name!! And I’m sorry for the mixup, but I’m betting this wasn’t the first time, right?! 😉
Honeslty, you’re doing great! You’re going to get through this and so will Tim. Sometimes these little things happen and good things come out of it! I’ve met so many incredible people along my odyessy that I wouldn’t have ever known if I hadn’t gotten leukemia, including being on Connect! So we never know what twists and turns our paths will take on the journey of life.

My story was a little different in that I was diagnosed and then admitted to the hospital the same day. I was in for 5 weeks the first time and started treatment right away. So really, no time to think about what was happening. But I’ve had enough other drama so I know the feeling of waiting for test results, etc..

Yes, I had a wonderful support team with my husband, daughter, friends and my medical teams. I never lost one night’s sleep with concern about my health... I was either going to make it or I wouldn’t. But I knew I was in the best hands possible with my local cancer center team and then at Mayo Rochester for the transplant. I also learned to no longer worry about ‘what ifs’…a total waste of time and stress inducing. It’s important to live in the moment and plan for the future. Don’t look back. ☺️ Sometimes I feel that I was spared to help other people get through their rough moments. It’s really my pleasure to be able to help.

If you’re interested, here’s a little story of a really amazing experience I had with being able to personally meet with a member whom I mentored. The young woman in the story is doing fabulously and will be graduating college in the spring. She’s just coming up on her 2nd rebirthday with her transplant. Another very positive story!

This little wake-up call has a positive thing in that it got Tim away from his cigarettes! That’s not an easy thing to do. But I’m betting he’ll be feeling so much better without them! And you’ll be a happy wife. ☺️
Wish him a happy birthday for me and have a fun with friends and family on his celebration. And really…just relax and have a great time! It’s going to be ok! Hugs.

Hi Joee, I think Tim had an appointment the 13th? Any news?

Hi Lori!!

Sorry I have not been in touch or responded. We are having a great deal of trouble with Tim's bloodwork that originally was done with his PCP.

They have all but ghosted us for the past 16 months after lots of phone calls that went unanswered, emails through the portal that went unanswered and text messages that have gone unanswered. So, I resorted a while back to going down there several times STILL with no repsonse or help from the front of the house at the office. Only after I wrote a bad review did the Office Manager reach out to Tim asking me to remove the review. Naturally, he said no and asked AGAIN, what was going on with the blood work, why we were being referred to a Hemotologist and when were we seeing someone and were told that we would see someone a couple of days before our original visit to the Hemotologist (mind you that was in mid January and his blood work was done in November). So we went all of those months with no answers.

At any rate, here we are February 21st. I left more messages as I started going through his blood work (a chore and a half for the Functional results from the Brock Center, our Cancer institute here in Virginia Beach) and noticed that he had blood work done twice in 2021 and in March of 2021 his WBC count was at 14.8, November 2021 at 17, October 2022 at 16.7 and this past November 2023 at 20.1.

I was heartbroken becuase since 2021 he has been quite over (at least in my eyes by 4 points) and all they said then was that it was 'slightly' elevated and most likely from the COVID vaccination. So, he didn't seem alarmed as they said 'slightly' and that there was nothing worrisome.

He got a lung CT scan done on 2/13 and today he had another CT Scan done for his liver and kidneys and bone marrow? As well, something happened with Lab Corp and he has to go back and get more blood work done because something or another did not go through. I am still waiting to see what that is as his Hemotologist is out of town until next week and our follow up is on 2/29.

This waiting is so stressful and glancing at the bloodwork results is even more stressful as you really do have to be a professional to make heads or tails out of most of it.

I created a spreadsheet with almost every test on there and highlighted the highs, lows, normals, positives and negatives and some have remained the same and some have gone up and down.

I am imagining that the blood work he has to retake is all of the GP, HLA and HPA's as they all read that there is no data or not detected. But, I could be wrong and there could just be something that isn't coming up at all.

I just want to be ready to ask any and all questions once the time has come to talk with them. Because the hubby doesn't ask all the questions. Like his B12 and Vitamin D has been very low for a long time and no one ever mentioned that.

Are we the only ones that have not gone over blood work in its entirety after we think that the PCP is doing their job? I feel again like I am failing as a person and as a wife because I didn't pick up on this.

And, I don't even know where the results for the bone marrow and CT scans are as they are not even in the chart. We don't have patient advocate yet because the Dr. is out of town and no one has seen the results yet.

I am still trying to be super strong (and he doesn't see my meltdowns) and Tim thinks I am a Superhero of a wife right now (sad) but it is hard.

In good news we had a wonderful weeend in Charleston for his birthday! And, as of today he has not had a cigarette in 16 days!! Although the "Smokers Flu" (the after effects) has been super crummy with his sinuses being congested and now he is coughing up a lot of plegm. But he is already sleeping better and his snoring has decreased. So there is that and I am very happy about it!!

We have a LOT of life to live and lots of plans and happiness in our future, so I am all about trying to keep the positivity on a SUPER HIGH!!!

And, am thankful for you and everyone here that gives their love, hope and insights!!

Welcome to the wonderful l world of CLL where we patiently engage in watchful waiting. I hope to remain in this stage for the rest of my life. Please keep in mind that our doctors will sometimes tell us that we will not die from CLL but with it. I overreacted when I started getting extreme chills but my blood work indicated all is stable. I expect my oncologist will tell me to "chill out" when I see her next week.

I should have mentioned that this now falls in the realm of bi-annual check-ups with blood work for me. In between, I basically ignore that I have it.