As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte count was 86 in November 2023 and reached 127 in March. Her next visit is on May 13th, 2024. Similarly, lactate dehydrogenase was 307 U/L in November 2023 and 325 U/L in March 2024.
I'd also like to know which form of treatment would be preferable: FCR, oral targeted medicines, FCR, or anything else?
I am asking you to share your experiences and information, which I will utilize to discuss with the physician. I wish you all the best. God bless you all.
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Sagarcanada
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I am not a medical professional but here is my opinion:
Your wife may need treatment for her CLL but it may not be needed soon. It is always disconcerting to see the lymphocyte count rise. The lymphocyte count is important at the time of diagnosis but surprisingly is not the star player when it comes to deciding whether treatment is recommended now.
Doctors tend to look at: Hg below or near 10 and trending lower, platelets trending lower and below 100, deep fatigue particularly after exertion, night sweats, repeated infections, and hospitalizations.
As to treatment options, except in limited circumstances, FCR would not normally be recommended for a first treatment option. Which options are available varies by country and I’m not familiar with what Canada has and has not approved yet. The drugs recommended may have side effects but not anywhere near that of FCR.
There are two basic approaches now: take a single medication ( such as a BTK inhibitor or Ventoclax) until the patient develops resistance, or take a drug combo for say two years, then enjoy a drug holiday of sorts. Which option is recommended will depend on several factors, including your wife’s preference.
Hope this helps. I am sure others will provide additional information. If you lock your post, more may answer. ( To lock, look underneath the reply button at the >, click on that and request the post be limited to the community.)
Thank you for sharing your experiences with the CLL journey. My wife stated that she feels fatigued, but she is still in decent physical condition. Her hemoglobin level is 114, her platelet count is 145, and she has no night sweats or infections. I believe she may require treatment for an additional year. She has TP53, and I discovered in the literature that FCR is not stable with this marker. I am only accumulating experiences and information. Sure, I will lock the profile. Thank you so much for your advice. God bless you.
Hi SagarCanada, I am also from Canada. The first time I needed treatment in 2019 I had to have FCR. The reason for starting was ALC was doubling quickly ending up being 69,000 before I started, enlarged spleen, nodes, I had a sinus infection for months I couldn’t shake. My hematologist wanted me to start a few months sooner but I delayed it thinking it was the sinus infection making my bloodwork jump. I did feel better once I started.
Fast forward to today I recently relapsed my FISH Normal has changed to 17P my two choices for treatment are Acalabrutinib or Zanubrutinib. I have not decided which one yet. I’m still feeling ok so hard to say when I will be starting, my DR figures in a few months.
There are some great treatment choices out there now even compared to a few years ago.
It's nice to know you're also from Canada. We live in Ontario and follow Princes Margaret Hospital Toronto. Today, I studied the literature and read it all, concluding that CLL is still stable and lymphocytes are increasing but not rapidly, since they have not doubled within six months. She has a follow-up on May 13, 2024, which I am preparing for. I'm not sure where you go to visit your physician. Our Physician Dr Chen has not mentioned anything about the therapy option. We will stay in touch and share further experiences and information. I wish you good health.
If I remember correctly Dr Chen is highly regarded in CLL. She is at a wonderful hospital. Im in Halifax.
She has an appointment coming up very soon so you should get some answers to your questions as well. Definitely keep us up date. It’s so good to hear about other people’s experiences.
It's wonderful that Halifax is such a lovely and historically significant city. I am looking forward to seeing Dr. Chen and discussing further. I wish you good luck.
I'm TP53, 17p deleted and mutated. My WBC went from 20 to 60 from Dec to March and they looked to treat me then rather than wait for WBC to get huge because with these mutations CLL can take off. I waited until June to participate in a trial and my hemoglobin dropped to after 5.5 after some internal bleeding in May that required hospitalization, so I know that things can progress quickly. FCR doesn't work for TP53. She'll probably get a BTK inhibitor like Red49 said. Based on my experience, treatment will probably be soon, but it's only my experience.
Thank you so much for sharing your CLL experience. I hear that you have been on this CLL path for the past eight years (if I understand correctly). My wife also has the TP53 mutation, so I wanted to learn about other people's experiences with the same genetic markers, so I'm reading the literature and gathering information. I wish you good luck in your CLL adventure.
With your other posts listing either a likely swollen spleen or swollen nodes in the abdomen area ("For the past few months, she has complained that her stomach is becoming heavy" and " she is uncomfortable and getting heavy stomach" ) combined with the fatigue and the likely doubling of ALC within 6 months (after it passed the over 30K threshold) at her coming May appointment, yes, she is now in the Goldilocks zone and you should be starting to look at treatment and timing. It's not an emergency, but it is a matter of weeks/months of W&W now, not years.
Since she has TP53, a continuous "ib" should be your desired treatment - alacabrutinib/calquence or zanubrutinib/brukinsa - over anything like FCR (which won't work for her well now).
Thank you so much for your input. I was on high alert and looking for information when I came across a beautiful article titled "iwCLL guidelines for diagnosis........................" in the Blood journal published by the American Society of Hematology. Yes, you are correct; our physician may monitor for a few weeks/months because Hb is 114, Platelets are 145, and several other metrics are normal. I appreciate your feedback, and I still want to see more feedback. I wish you all the best.
My hubby is TP53 depleted and he was put on Obinutuzumab (in the beginning) along with acalabrutinib and then venetoclax- I call this immunotherapy his Angel Warriors - he is during fantastic and he reach uRMD in his blood last year and only has a minuite in his bone marrow and soon will reach uMRD soon. There are exciting newer treatments too. I truly believe they will find a cure in our life time. You came into this wonderful community of folks who have a wealth of knowledge and experience too.
Thank you very much for your nice feedback. I'd like to learn more about the CLL journey with TP53 gene mutations. I intend to receive additional comments and share information about your Angel Warriors in the future. I found this forum to be quite pleasant, with friendly members that had extensive knowledge. Wishing you the best.
I have a similar profile to your wife. I am TP53 mutated, 13 q biallelic deletion and IGVV mutated. I was formally diagnosed in 2020 although my GP had monitored me for a year before that following an abnormality with my blood found during a Well Woman check.
My consultant told me that in view of my markers, it was likely that I would have a shorter time on Watch and Wait and that chemotherapy would not be an option but that there were other drugs coming. He also said that the time to start treatment would be the doubling of lymphocytes in a six month period. This proved to be the case.
Come May 2023 my haemoglobin was dropping as were my platelets. My lymphocytes had doubled so I commenced treatment at the beginning of July. I am on Obinutizimab and Venetoclax which I have tolerated well.
I have never had sweats but during the six months preceding commencing treatment I seemed to get a lot of colds, conjunctivitis and norovirus which again were indicators that commencing treatment was coming.
Happy to follow your progress so feel free to private message if you wish. All the best to you both.
It's fantastic to hear that you and my wife share similar markers, so we can share our experiences and information. When I read the many posts and articles, I realized that my wife still needs to be in the W&W stage because her hemoglobin, platelets, and other parameters are slightly below the normal level, and we have an appointment with a physician on May 13, 2024. Lymphocytes are really high, and I've discovered that they're not the sole determining factor. Are you now taking Obinutizimab and Venetoclax, both of which are taken orally? I will send you a private message so that we can share more experiences on the CLL journey.
8 doses of Obinutuzumab are given as 9 infusions, usually by cannula on the day but a PICC line can be used. The first dose is split 10%/90% over day 1 and 2. Then full doses are given on day 8 and 15. The remaining 5 doses are on day 1 of each cycle starting at cycle 2 and ending at cycle 6.
Venetoclax is oral tablets, starts on day 22 with 20mg/day, dose is increased every 7 days 50mg, 100mg, 200mg to full dose of 400mg/day.
It's great that you've started treating CLL. Are you taking your medicine in the hospital or at home, as directed by your doctor? My wife is concerned since she has heard that the drug weakens patients; what are your experiences? How long should the medication last? I am not familiar with the PICC line. I hope you are in good health. God bless you.
Thank you for replying Sagarcanada. I have sent you a private message. I have eight weeks to go on Venetoclax. I am seeing my consultant in July. As you can imagine, I am looking forwrd to that appointment with meixed emotions!
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Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?
So it looks like the roller coaster is about to begin...
End of the road for PBS-available treaments for me.
When is it time?
