Hi all! As some of you know, I’m an adult daughter to a dad who unexpectedly was diagnosed with CLL over the summer.
My dad has his first blood draw post-diagnosis and FISH tomorrow and ngl I’m very nervous. He’s mostly asymptomatic (only possible symptom I’ve noticed is he seems to be getting warm more easily), but the journey hasn’t been great so far…like many on here, the diagnosis was totally unexpected, then we got hit with bad prognostic markers after being told that there was hope it was indolent. Given this road, I’m trying to prepare myself for a short watch and wait. I’m very grateful that he was diagnosed at a time where even bad prognostic markers no longer mean a death sentence, but I’m definitely nervous about seeing how much the disease has progressed and the possibility of starting treatment (even though I know that regardless of when treatment starts, it will be likely be life-saving).
I know I can’t do anything about the results, but any thoughts/advice as we start the journey of getting bloodwork every few months?
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anongirll1927
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Hello anongirll1927 I understand how worrying this is for you and this is the right place to get support. The first thing I would say is don't get too embroiled in worries about prognlstic markers at this stage. Testing is a normal part of CLL and assists in identifying the best treatments when the time comes. Blood tests are regular occurences with CLL and help to track the disease at all points of the journey.
Watch and wait is different for everyone. Please remember that there are a range of reasons to start treatment other than blood results. These can include drenching night sweats, enlarged lymph nodes, weight loss. There are many pinned posts on this platform where you can find more information
Feeling out of control of the situation is heightened when you are not the person with CLL. That has been my experience.My advice to you and your father is to ask the consultant questions when you are unclear what things mean. It is so easy to get swept along in the appointment with the level of jargon
Worrying is natural but try to take it one appointment at a time. When and if the time for treatment comes, we are fortunate that there are many options for treatment with others coming down the pipeline. We are all here to support you.
Sending good wishes for the appointment. Deep breaths
If you lock the post to the community through the edit function you may get more responses.
Not sure if you have considered it but being in the USA you have the opportunity to join the NHLBI Natural History Study by a team of CLL doctors at NIH in Bethesda, MD. Link: clinicaltrials.gov/study/NC...
It is a good opportunity to get more insight and suggestions free of charge. If you live close by they may actually invite him to stop by more frequently. There was a period I was there every 3-6 months. Now once a year even post-treatment. I was only four years older than you when I was diagnosed in 2018 so I might have been a mild curiosity to get blood from.
Also, if there is talk of treatment there are amazing opportunities to get great drugs for free through clinical trials. There are trials specifically designed for treatment naive patients. Unfortunately, if he tries out a drug, he doesn’t like side effects, and then tries to join one of these trials he would not be eligible. The reverse would be okay though. Quit a trial and just get whatever your insurance covers.
I’d get used to navigating clinicaltrials.gov and narrowing down what major research centers are close to you.
Another reason besides $$ is that many patients find they are given extra attention and care on a trial. You are really important to the research.
Frankly, if you lock your post and give a general idea of what region of the USA you are in then specific suggestions can be made by members. If you are uncomfortable with this and he discovers his CLL is in the fast lane check out the CLL Society for a local support group to get more suggestions in your area.
MD Andersen is a well known, high quality facility. The docs are great. The only reason I can think of, for him to consider going elsewhere, is of there is a trial he wants to be in that MD Andersen isn't a study site for. I flew from the Rocky Mountains to the East Coast when I first got diagnosed because there weren't any nearby sites participating.
Here's the link for US patients. You can see what's going on in your state, or nearby ones, down to the city.
Note that when you go to type in the Condition, there is a drop down box. You may want to search both "CLL" and "CLL/SLL". And change the "Study Status" radio button near the bottom to "Recruiting and not yet recruiting" or you will see older studies he's not eligible to join in your search.
My best advice to you is to relax. He is in a great place and the odds whether he needs treatment or doesn't he will be just fine. It really is more like a chronic condition you just learn to live with. Stay off of Google it just seems very outdated. Treatment in the vast majority of cases is not chemo. The targeted therapies are games changers in this disease. People live completely normal lives on treatment or off. I look at it like being diabetic. You monitor, you control it and you carry on with your life. Best wishes for your father.
You are a good care partner to your Dad. I found the more I “front loaded” my knowledge on CLL/SLL, the more my anxiety was kept in check.
Check out CLLSociety.org, a support and education network in the US. There is a tab of info for the newly diagnosed, important testing, list of specialists, videos of patient stories, a glossary of terms, etc.
A good and reputable resource to have in your back pocket.
I was diagnosed with CLL in mid-2013 and in 2014 was told I was 17p deleted. I began treatment in mid-2015. Thanks mainly to clinical trials giving me access to targeted therapies, I'm still here 11 years later.
CLL patients live from blood test to blood test, scan to scan, and how to manage anxiety is something most of us learn as we go along. I have a blood test every two months and if the results are okay I have learned to put my cancer out of my mind — until five or so days before the next blood test. Then anxiety slowly creeps up on me.
Then the cycle starts again.
Your dad has so many effective treatment options compared to a decade ago and targeted therapies have the ability to overlook poor diagnostic markers.
Hi,I was diagnosed at stage 4 with 100% marrow infiltration and second highest markers 4 yrs ago. I went to treatment o+I and was in UMRD within 250 days. I am on twice daily alcalibrutinib and monthly routine bloods and 6 monthly flow. I am now 60 , full time dad to my youngest 2 kids(7 and 5), I play 6 to 8hrs of pickleball a week and live a perfectly normal life... I probably drink too much and enjoy plenty of red meat. My advice to your dad would be enjoy life to the max as statistically you more likely to die with CLL and not from it. Doing a bucket list trip in 5 weeks.... off to see Santa at the North Pole. Best wishes to your Dad.
Dear Anongirll1927, whilst i can’t impart any wisdom on the CLL front as i am on a steep learning curve largely thanks to some members of this group ( who will undoubtedly also guide you) i can relate as a daughter of a dad with CLL (same reason i’m here). My dads journey is 8 years in. As advised we got a referral to a CLL specialist and look forward to learning the ins and outs of the markers and all the acronyms! My main recommendation is to hold strong and focus on positive energy for you both. There may be poor readings and there may be hopeful readings but try to focus on your dad and listen to the body and give it what it needs. Fear and anxiety will not be helpful so find the good moments and embrace them!! I wish you & your dad a blessed journey with all the supports you need readily accessible. 😊
you are experiencing what we patients and caregivers alike go thru with a CLL diagnosis and you have gotten some very good advice.
Only you and your Dad can make a choice that is good for you. However, to be at MD Anderson is a great place to be.
If I were there I would shop around for a CLL specialist that you both felt comfortable with and follow their lead. One does not die from CLL but dies with CLL and often Pneumonia comes into play. I would strongly encourage you to see he had all the pneumonia vaccines available as well as the newer RSV vaccine. Plus have all other current vaccines updated and include the latest Shingle vaccine that requires two shots.
This is indeed a better time to be facing CLL then in the past.
Wishing you and your Dad all the very best….just try to relax and be strong advocates.
Good news is the doc doesn’t think he needs immediate treatment. Bad news is that he has a very rapid doubling time and they are loosely planning to start treatment in February.
I had a gut feeling about his WBC doubling time being short given prior appointments, but I’m still feeling really sad and bummed out about it. I’m trying to focus on the fact that it could be worse and they could have tried for immediate treatment.
Rapid WBC doubling time (should be Absolute Lymphocyte Count (ALC) doubling time for best accuracy) is an indication that CLL may be coming more active, which needs to be confirmed by looking for other triggers for starting treatment. See healthunlocked.com/cllsuppo... We know from monitoring lots of people with CLL, that sometimes the amount of CLL in the blood can grow rapidly, then stabilise for many years or even drop, as illustrated in the attached image.
The planned review for next February will give you and your Dad time to investigate which treatment option is most appropriate for him and for him to do what he can to be in the best possible shape to start treatment. Getting up to date with vaccinations is a wise move
healthunlocked.com/cllsuppo... but improving physical fitness has excellent evidence for ensuring treatment is best tolerated and works well.
M D Andersen is one of the best CLL centres of excellence internationally. Your Dad is in good hands.
Neil
Naturally progressing CLL lymphocyte counts have several patterns and can stabilise
These things are very worrying especially in early stages - not surprisingly in the face of the unknown. When first diagnosed my specialist said CLL is a condition you die with - not of. Treatment options are improving all the time - if and when they are required the most suitable available at the time of need are selected for each specific patient.
Be practical. Keep track of appointments, frequency & test results as well as what you are both told. Ask for clarifications when you are not clear & note what you are told - even better if you are given test results and summary notes. File them in date order so you can track developments and changes. If provided with a CNS make sure you get their contact details. Also keep the list of B symptoms to hand to watch out for as time goes on - and who to contact and how soon to get them checked out .
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Speed of WBC counts....time to doubling. I'm scared
Dad has to start CLL treatment
First 3 month follow up after chemo
Chemo advised for anaemia follow up
Diagnosed with Richters follow up - great news
