I’m newly diagnosed with CLL. I just got done going through surgery for early stage of breast cancer (DCIS).

[Cfarrar]

I’m looking for someone with the same form of CLL. 13q deletion (85%) and mutated. Since I just got diagnosed I would love to hear from someone who has been living with this diagnosis for awhile and how it has effected their life. Thank you so much!

[GMa27]

I am 13 q mutated. Diagnosed at 52. After initial shock, I realized my Dad had it and did fine...he never needed treatment. I was on W&W 12 years. Never googled or went on sites cuz I just figured it's nothing since my Dad did so well. Just enjoyed my life as my hematologist told me. Reassured me that I had great markers. Then in my 9th year when nodes appeared in my neck, I joined sites and was amazed that so many people had it and everyone had different journeys. I never had pains or side effects people had mentioned. You would never know I had anything going on. I just kept up with my every 4-5 month check ups.

I got expert opinions in my 12th year after my local hematologist said I was ready for treatment. I was 62.5 years old and it was my last chance for FCR chemo. Only needed 3 rounds. Was very uneventful. Feeling great and in remission for 2+ years.

With our markers it's usually a very very slow progression. Sorry u are dealing with another cancer. 💕🙏

[Cfarrar in reply to GMa27]

Thank you so much for replying and telling me this. I really do appreciate it! It is also very comforting to know I'm not alone out there and that someone else is experiencing this too. Is your dad still alive? What other symptoms besides enlarged nodes that caused them to start treatment? All this time did you ever suffer from fatigue? Did you ever have skin cancers? Do you take any suppliments or did you have to change your diet? Just wondering if there is anything I should be doing other than the obvious things like eat healthy and stay active. Also did you ever have a CLL Specialist?

[GMa27 in reply to Cfarrar]

My Dad lived to 94! Never needed treatment. He was amazing. He never knew I had CLL- didn't want him to feel guilty. His twin had it and their mother! My sister does not.

I never changed my diet... My Dad ate a horrible diet and did fine. My uncle who didn't have CLL but other issues lived to 102- his diet was worse than my Dad's...so I am not into healthy foods. My hematologist said to stay away from fad diets and especially keto. She did say moderation.

Many will disagree with that thinking. I eat fast food, red meat, starches and I do slip in veggies.

My CLL gave me gastroparesis for 3 years. It was a horrible condition and an extremely restricted diet. Usually not curable but because the nodes caused it- which we didn't know till 6 months after chemo- it was a miracle and it disappeared to the shock of my gastroenterologist & hematologist. Back to fun eating.

Since I never had fatigue- watching my diet wasn't a priority. I know for those who have fatigue or other issues- certainly making adjustments in your diet is important.

I have lived in Florida for past 20 years...sun and fun is my life. My hematologist & dermatologist said I did the damage to my skin growing up. Lived for my summers while living up north. Just had a basal cell removed few months ago but that was it. My friends have had more things removed from their skin and more skin issues than me.

Time of treatment came when nodes got bigger in my neck, anemia started, WBC was 225k & I forgot the other levels. I felt perfectly fine so that was frustrating. But I got 2 second opinions from CLL experts and everyone agreed on my treatment. I was able to be treated by my local hematologist. Experts are too far away. I don't like to deal with huge centers. My hematologist is 3 blocks away. I get calls back within hours, easy appts. My hematologist knows my other doctors. But definitely if someone is having difficulty or near treatment, should always see a specialist. Especially if you need a trial. 💕

[SofiaDeo]

Hi, I don't have your markers, just a comment that might get more people to respond. You haven't yet "locked your post", which would keep the conversation inside this CLL group instead of available to anyone who Googles on the internet. Some people won't respond to unlocked posts. If you are using a browser, on your left screen side avatar next to your screen name, tap/click it. Under "Posts" tap the title of your post. Scrolling down, to the far right of the Blue "Reply" button is a "More" with a down arrow. Tapping the down arrow allows you to Edit your post. The bottom of your post has radio buttons under "Who can see my post?". You can then change it from "Anyone" to "Only community members", then tap/click the Blue Post button again. Most of us choose "Only community members" to keep it private to this CLL group. We can tell if it's locked, a little padlock symbol will show to the far right underneath your title when people read your post.

[cllady01 Former Volunteer]

Cfarrar, welcome! It is good to see you have found this site which has many experienced members and a good mix of the specific profile deletions. I am 20 years without treatment and show 13.14.3 as my only deletion. I am IGHV mutated.

The following link is filled with more links for new members to read in regard to navigating the information about CLL. You will find discussion of general health and vaccines to keep updated, along with other valuable information. All a lot to take in. So take you time and if you see questions arise from your reading, feel free to post any questions.

healthunlocked.com/cllsuppo...

Scroll down to find the information about "When Will I Need Treatment" there are many links within and you will find the list of situations that lead to a need to treat. Some, as you have seen already, are in long term Wait and Watch and we are each different in or manifestation of CLL and time to treat. A lot to learn, but do not "founder" on all of it. Take your time. (THE MAIN POST IS LISTED IN PINNED Posts on this page, so you can open it any time to pick up where you left off the last time.

[Cfarrar]

Thank you so much!

[Hilomom]

Hi, I'm 13q and mutated also. Diagnosed in 2018. Learning to live with my CLL isn't always easy and I'm a work in progress. My WBC is 56, my ALC is 37. I have 2 nodes involved. So far, no fatigue or anemia. I'm 62 and work at a job that has me on my feet all day, up and down ladders, bending and kneeling. Work is a blessing as it makes me focus on something other than myself and it gives me health insurance. It is my sincere hope to not need treatment for a long, long time but that is entirely up to my body! At least the meds available to treat are getting better and better. I wish you well. Debbie

[baq724]

I’m 50. Diagnosed at 46. Specialist reviews old blood tests and determined it probably started when in was 43. So I figure I am 7 years in. 13q, mutated. 2016 ALC was at 19k. 2021 it was 29. Very very slow. I feel fine, exercise and enjoy life. I worried a lot in the beginning, but when my specialist told me at my last visit he didn’t know if I would ever need treatment, I believed him and stopped worrying so much. I get a little tired sometimes, but my sleep cycle has always been off. I’m more awake at 12 midnight than I am at 12 noon. This site helped me tremendously! Keep up with your checkups and vaccinations. Treatment options have probably tripled since I was diagnosed. By the time you or I need treatment (if we ever do) there will so many more. Maybe even a cure. Good luck to you and feel free to ask any questions you have!

[Lisa-1959]

I am 61 and have the same markers. Was officially diagnosed in April 1997 (age 37), but I had been dealing with enlarged lymph glands since 1993, so I'm sure the lymph nodes were the initial manifestation. (Funny thing...the lymph nodes went down, and then my white cell count started slowly climbing.) I went through the "not me", "why me", and "poor me", but after the initial shock wore off, I realized I felt fine and just resumed living life as though nothing was wrong. Actually, if I hadn't known it, I wouldn't have known it!

I did not need treatment until August 2018, so I went 21+ years from the official diagnosis (25 years since the initial lymph gland appearance). I started on Ibrutinib, but I had side effects my local oncologist didn't like, so I was switched to Venclexta/Rituxin. Still on Venclexta and doing well.

A side note: I was diagnosed with breast cancer in November 2020...invasive lobular, LCIS, and DCIS. Had a lumpectomy on December 11th, and today was my 4th radiation treatment.

Praying all goes well with you...and that you will not need treatment for a long time...if ever!

[Hidden]

I am unmutated 13q del, have had no treatment yet. I also had DCIS. I also have hyperthyroidism. Since I was diagnosed with cll 6/19 my symptoms have steadily become worse. FATIGUE, mouth sores, sweating night and day, feel so weak I can barely move sometimes. Now I have a huge increase in muscle and bone pain, it wakes me up at night. My shoulders ache and my arms go numb. Sweating wakes me up at night and I have to change my nightgown and sometimes the sheets. My hands and feet are cold even when I am sweating. Feel like I can't think, actually sometimes I know I can't think if I am trying to do something complicated like sew. I have seen several oncologists including a cll specialist, they were planning treatment but now decided I need a Rheumatology consultation as there is some autoimmune component. It's miserable. I can barely function some days all I can do is get dressed and cook. I used to walk fast five miles every day, now my pulse goes to 180 walking up from my garden. It has had a bad effect on my relationships, friends and family just do not understand. My partner is trying and he helps me a lot, but he has a very hard time dealing with me being sick most of the time. I am a widow and finding not having a family really hard with this challenging disease.

[Cfarrar in reply to Hidden]

I'm so sorry to hear this, I will pray for you. I can't imagine how hard this must be for you but I've heard there are so many great treatments out there that there is hope that you will get past this tough season. Wish I lived near you so I could help you!

[Hidden in reply to Cfarrar]

Thank you so much, the dilema is which treatment do I really need? I found it very interesting that someone like me also had DCIS, I wonder if that is true of other Autoimmune diseases. Doing research. Thanks again

[Adlucy]

Hello. I have 13 q deletion and TP53 mutated. I was diagnosed six months ago aged 72 with CL after a year of being monitored by my GP. I am on Watch and Wait.

I had a DCIS twenty years ago. I was told that as it wasn't certain which way the cells would change, I could wait and see but I didn't want to. I chose to go for a lumpectomy and radiotherapy.

Since my CLL diagnosis I have wondered whether or not I should have gone for the radiotherapy but it seemed the best thing to do at the time.

In myself I feel fine. I worry while waiting for my blood test results but I ty not to think about it and carry on as usual. My biggest frustration is not being able to see my six month old granddaughter!

All the best.

[Cfarrar in reply to Adlucy]

Thank you so much for this. Yes, I often wonder if radiation was the right thing to do after my surgery but at the time I didn't know I had CLL and it is the standard of care. Glad to hear you are doing so well and have grandchildren, that's my dream that I would live long enough to see grandkids. God willing I will!

[Hidden in reply to Adlucy]

I chose not to have radiation treatments, but I still got CLL...

[Adlucy]

Also forgot to say I have an underactive thyroid gland and have taken Levothyroxine for many years.

[Hidden in reply to Adlucy]

I think we all have hypothroidism?

[J1015]

I am 13q mutated. Since I was so healthy, I didn’t get annual physicals. I was diagnosed in 2016 through routine labs but looking back five years prior to my last blood work in 2011, my doctor saw that my white count and lymphocytes were already elevated and my doctor at the time didn’t seem to notice. So long story short, I am doing great! After the initial shock, some Zoloft and weekly counseling, I am back living my life just as everyone else is. I haven’t been sick a single day since diagnosed. I have been moved to six month labs instead of three months. This was recommended by a specialist at M D Anderson, who I see every 18 months. Don’t be alarmed if you see your lab numbers jump around. Stress and other factors can affect your white count. They look at a long term trend of your blood work. Of course with the pandemic, we need to be extra careful just like everyone. Wishing you the best in your journey.

[Cfarrar in reply to J1015]

Thank you for that. I was curious are your trips to MD paid for by your insurance or are you having to pay for all the treatment out of pocket.

[J1015 in reply to Cfarrar]

Yes my insurance covered my labs and appointments at MDA. I just turned 65 so the next time I go, it will be filed with Medicare.

[baq724 in reply to J1015]

Sounds like you and I could be twins....and have the same primary doctor! 😂. A little anti anxiety, some counseling, never sick but one time in the last 6-7 years.

[bennevisplace]

Hi Cfarrar, I was diagnosed 15 years ago and finished treatment (6 months on FCR) nearly a year ago. I had my markers done shortly before starting treatment, standard practice in the UK. Like you13q del, mutated. Progression was very gradual and with lymphocytes around 200,000 treatment was prompted by other cell counts falling off. I had a haematologist to call time.

In later stages of w&w a few minor infections needed antibiotics, and shingles needed an antiviral which I'm still on. Surface lymph nodes only slightly enlarged, spleen more so. No night sweats etc.QOL was unaffected for around 10 years, then energy levels started to decline. Not dramatically though, 24 months before treatment I was mountaineering in Scotland.

FCR treatment was no great drama, and the best is it's over quickly and is usually great for13q M. Downside is it hammers your immune system to the floor for many months. In the US, FCR is more or less history, replaced by targeted therapies. They will only get better by the time you are ripe for treatment, if ever.

With the insights your question has provided, my recommendation is to file it all away, forget it and get on with life. Your CLL is here to stay, it will do its own thing in its own time and there's not much you can do to change that, so worrying will achieve nothing. Find a specialist and leave the monitoring and decision making to them.

[Cfarrar in reply to bennevisplace]

Thank you so much for all this information. Extremely helpful and appreciated! So glad to hear this, very encouraged!

[SlowCLL]

Welcome,

I am a 77 year old American male who was diagnosed with CLL in 2015 and with hypogammaglobulinemia in 2016.

Much like you, my most recent 2017 FISH analysis of peripheral blood specimen demonstrated a deletion of 13q in 86.5% of nuclei; an earlier 2015 FISH test showed 85% of the nuclei with the deletion. My 2017 IgHV analysis revealed a somatic hypermutation at IgHV gene VH4-61. Taken together, these test results confirmed that I was likely to have an indolent type of CLL. So far, this prognosis has proven to be correct, my CLL has not progressed.

However due to the hypogammaglobulinemia, I have a suppressed immune system. This has led to the need for weekly self-administered subcutaneous infusions of immunoglobulins to stop repetitive bacterial infections and quarterly visits to a dermatologist so she can cut out early squamous cell carcinomas and malignant melanomas before they become serious problems.

Most people with CLL have immune system problems at some point. You may wish to consider using an Immunologist to test your ability to produce antibodies and a dermatologist to deal with secondary skin cancers due to earlier sun damage.

Good luck,

Owen

[Cfarrar in reply to SlowCLL]

Thanks Owen! What is hypogammaglobulinemia?? Thats a mouth full😜Why did they test you for that? I had never heard of a immunologist. At what point did you feel it important to see that doctor is that common for CLL patients to test their antibodies?

[Newdawn Administrator in reply to Cfarrar]

A simple explanation courtesy of Healthline is;

‘Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi. Without enough antibodies, you're more likely to get infections.’

It’s not routinely tested by our haematologists as part of the monitoring process but ideally would be from time to time particularly if the patient is experiencing more frequent infections. I’ve had depleted immunoglobulins since well before my CLL treatment was necessary. Only the IgG can be supplemented by infusions of immunoglobulins which are essentially the pooled plasma containing antibodies from potentially thousands of blood donors.

Newdawn

[SlowCLL in reply to Cfarrar]

Immunologists are doctors who diagnose, treat, and work with immune system disorders. In my first encounter with an Immunologist, he tested my immune system to determine why a repetitive series of bacterial pneumonias were not responding to antibiotics. He found that my IgG level was only slightly below normal, but the two IgG subclasses that are supposed to respond to bacterial pneumonia were significantly below normal; this led to the hypogammaglobulinemia diagnoses. I was put on monthly hospital administered IVIG infusions and fifteen months of infections ended. After nine infusions I began having a negative reaction to the IVIG so I stopped the infusions. Another Immunologist tried different brands of immunoglobulin supplements and settled on a lower dose self-administered weekly infusion that works great, no negative reactions or infections. In addition to finding the drug that works best for me, the Immunologist conducted tests that demonstrated I do not retain an acceptable response to traditional pneumonia vaccines in order to convince my private health insurance to pay the $4,000 a month cost of the infusions.

Most CLLers have some degree of immune system dysfunction. It has been my experience that finding the proper solution for individual immune system problems and how to convince the health insurance gods to pay for it, is best done by an Immunologist.

You are coming off a major health problem and just starting down what could be a long CLL road, getting a baseline measurement of the strength of your immune system may be a good idea.

Good health,

Owen

[Grieb]

My wife has had 13q14 deletion, Trisomy 12, mutated , B-cell Leukemia for 20 years. Bottom line--you will not die from this disease unless your physician kills you with his recommended treatment !! If he recommends FCR, run don't walk and find another "expert". The 13q14 deletion means that your defective B-cells no longer monitor for extra DNA strands hence cells with 3 strands at 12 can survive.

One apparent side effect of CLL is inappropriate, immune-system inflammation response. CLL is just one of many things that can trigger this unwelcome, recently recognized and potentially life-threatening response that is rarely checked by clinicians. Have your TNF-alpha and interleukin levels measured. Get a SpO2 finger monitor and check your nighttime blood-oxygen levels. If your immune system is over reacting contact me and I will give you some more helpful information.

The best source of relevant CLL information is Dr. Jeff Sharman's web site.

[Cfarrar in reply to Grieb]

Wow thanks for that. This all so mew to me I feel like I trying to get a drink of water from a fire hose! So good to hear you wife has lived with this for so many years!

[Kokobean]

Hi there. My husband was diagnosed in February of 2015 with 13q. We didn’t know at the time that he was unmutated, but I had my suspicions. In the summer of 2018 he developed large lymph nodes in his neck and face and we were off to a specialist. He was tested for mutation status and found to be unmutated and 11q in addition to 13q. Due to the mutation status he was put on Ibrutinib and has been taking that for 20 months. He is doing fantastic with no side effects. There are so many reasons to be optimistic about your diagnosis. Just stay on this forum and ask questions. Best Wishes!

[Cfarrar in reply to Kokobean]

Good to hear he is doing so well! Thank you

[Kbcjones]

I’m also 13q but don’t know mutation status. I was diagnosed in 2012 at age 58 and have been on watch and wait ever since. My WBC just passed 100,000 but I have no symptoms, no enlarged nodes. My CLL specialist says I am a puzzle - he considers me Stage 0-1 because of no nodes, but my spleen is slightly enlarged which would make me stage 2. I think I may just have a big spleen! I see him once a year, although in Jan for the first time he wants me to have ivig levels tested in 6 mos. He tells me all the time I will die with CLL rather than from it. Most days I don’t even think about it, but when you have concerns this is the BEST place to come!Kathy

[Cfarrar in reply to Kbcjones]

Kathy thank you for this! Very encouraging!

[DancinGal]

You are not alone and you will find good support here. I was diagnosed with CLL 26 years ago and have been through 4 kinds of treatment for it. I had DCIS 5 years ago for which I had surgery, radiation and 5 years of a drug to prevent recurrence. Like you, I am 13q– and mutated. However, 5 years ago, 17p deletion also appeared. My last CLL treatment was venetoclax + obinutuzumab, which resulted in undetectable disease (uMRD) only 4 months after beginning treatment. There are excellent options for CLL treatment, as I'm sure you've learned by now. CLL didn't affected my lifestyle much pre-COVID, but I did take some precautions:

1. I stopped traveling to countries where drinking the local water was not advised. (Even though I didn't drink the water, I still got sick.)

2. I stopped going on cruises due to the risk of norovirus.

3. I stopped eating at pot-luck dinners because I got food poisoning a couple of times (even when others who ate the same things didn't get sick).

4. I stayed away from sick people. I avoided crowds during flu season.

5. I put on high-SPF sunscreen and a hat when in the sun (due to the higher skin cancer risk with CLL). I put on insect repellant prior to going outside whenever there was a risk of a mosquito or tick bite.

6. I got up-to-date on my vaccines.

7. For long trips, I brought along antibiotics in case of a bad sinus infection. For long plane flights, I used a saline sinus spray to help prevent sinus infections. When flying during cold/flu season, I wore a mask.

Now, in the COVID era, I expect to be wearing a mask (KN95 respirator) in public indoor places indefinitely, even after I'm vaccinated... until the case numbers approach zero (heaven knows when/if that will ever happen) or unless I'm sure that everyone I'm with is fully vaccinated and not immunocompromised like we are.

Unlike the worry and panic I experienced right after diagnosis, nowadays I hardly think about CLL and am grateful for what I am able to do, for all the medical advances that are available to us, and for a nearly "normal" life. I hope your CLL journey is long and uneventful, and that you continue to enjoy a good quality of life. You CAN do this!

[Justasheet1 in reply to DancinGal]

DG,

What took you so long to find this forum? Your reply was words to the wise.

Jeff

[DancinGal in reply to Justasheet1]

I wish I had found y'all sooner! I just stumbled upon this forum 2 months ago. Thanks for your kind words.

[Cfarrar]

Thank you so much for this info so very helpful!

[MsLockYourPosts Passed Volunteer]

My CLL was diagnosed in 2003 and I needed treatment right away, but that gave me until 2015 before retreating with Gazyva. I am 13q but have never had my mutational status checked.

In 2007, on my last day of teaching before retirement, I found a small lump on my breast - DCIS. My latest mammogram still shows no reoccurrence. Feel free to send a chat if you have questions!

[Cfarrar in reply to MsLockYourPosts]

Hi thank you so much for your reply. Do you mind me asking if you had radiation after surgery? Glad to hear you’ve been doing so well. What kind of treatment did you have?

[MsLockYourPosts Passed Volunteer in reply to Cfarrar]

I had a lumpectomy, then a second one. Bad first surgeon - I should have gotten a second opinion before proceeding. After the second lumpectomy I had 28 days of radiation. No chemo needed!