Yes. I started treatment this past March. It a targeted and immunotherapy combination treatment of daily oral Venetoclax (Venclexta) plus 6 cycles of intravenous Obinutuzumab (Gazyva). The treatment is working well so far and side-effects are much lower than traditional chemo. There are options for treatments of CLL/SLL and every oncologist has their favorites.
I can’t get weblinks to go through on Mayo Connect yet so go to ChemoExperts.com and search for Treatment Regimen for Chronic Lymphocytic Leukemia (CLL) if you want more detail.
I can send you a lot more in the way of helpful resources once Mayo Connect allows me to.
I've been on IVIG since 2010. Developed Pyoderma Gangrenosum in about 2015 as a result of CLL. Underwent treatment with Rituxin and bendimustin then back to IVIG every 6 weeks. Have developed Pyoderma Gangrenosum again and now half way thru 4 weeks of Rituxin only to determine if it is effective. May be adding ibrutinib if Rituxin doesn't control sufficiently. Have been advised I may need Rituxin monthly. Guess I'll not be Stage 0 after this. Rituxin did cause some hair loss, thinning on top of scalp and have been using Men's Extra Strength Rogaine since '17. It has helped about 70%
I 67 years old and live in Canada. I was diagnosed with CLL in December 2021, so 2.5 years ago. From the begining smudge cells were present. Every blood test showed a rise in white blood cells and lymphocytes. Although I was told they would probably level out, they never did. Exhaustion was my biggest factor and always being very active was really denting my style as I could only do half of what I used to do and that was with a nap after any activity. I had swollen lymph glands everywhere. Finally in October 2023 I was told I had high risk cll with poor prognosis.
I have:
chromosome 17p deleted
TP53 variant identified
IGHV hypermutation
status: unmutated
In april 2024 I finally had a CT scan which is leading to more tests particularly on my thyroid which shows some large nodules. I will see a specialist in September.
On April 17, 2024 I started on Alcalabrutinib, or Calquence. With three more bloodchecks, the WBC count and Lymphocytes continued to climb but at least my lymph nodes were not as swelled . Finally on June 5, the numbers started to decline. They are still very high but at least are going in the right direction. I remain very tired. The joint pain increased, sometimes i feel itchy and my lips get very dry so i do keep them moisturized. I am going for another appointment next week so will see how my numbers are at that point.
I hope this information is helpful for some people out there who have just started their cll journey. And here is hoping that your numbers do level out and never reach the point of needing treatment!
Just had labs and 3rd infusion of Rituxin. My absolute doubling time was 3 months. The lymphocyte levels remain unchanged, at a high level.
The oncologist said the lymphocyte levels may remain as my new normal. The pyoderma gangrenosum has stopped its growth.
The oncologist stated she would not have begun therapy but her discussion with my dermatologist made her agree to begin Rituxin. She does not seem to understand or acknowledge there is a connection between PG and CLL nor is there a need for treatment. I have sent her articles from medical journals but I don't know if she reads them .
Last week her PA said normal therapy is 4 weeks of Rituxin then go to monthly. The oncologist seems to be planning the 4th infusion then a blood test to see if treatment is warranted . I asked if my IVHG was mutated or unmutated and she didn't answer, just said she was going to run a flow cytometry test again .
Last evening I got results from a manual reading of the most recent blood test and smudge cells remain at 2+ (more than half the lymphocytes are smudged) and now it says my platelets are enlarged .
I'm not sure what that means but it can't be good .
I am very confused and don't know what to do. The oncologist doesn't seem to know or understand my condition.
Just had labs and 3rd infusion of Rituxin. My absolute doubling time was 3 months. The lymphocyte levels remain unchanged, at a high level.
The oncologist said the lymphocyte levels may remain as my new normal. The pyoderma gangrenosum has stopped its growth.
The oncologist stated she would not have begun therapy but her discussion with my dermatologist made her agree to begin Rituxin. She does not seem to understand or acknowledge there is a connection between PG and CLL nor is there a need for treatment. I have sent her articles from medical journals but I don't know if she reads them .
Last week her PA said normal therapy is 4 weeks of Rituxin then go to monthly. The oncologist seems to be planning the 4th infusion then a blood test to see if treatment is warranted . I asked if my IVHG was mutated or unmutated and she didn't answer, just said she was going to run a flow cytometry test again .
Last evening I got results from a manual reading of the most recent blood test and smudge cells remain at 2+ (more than half the lymphocytes are smudged) and now it says my platelets are enlarged .
I'm not sure what that means but it can't be good .
I am very confused and don't know what to do. The oncologist doesn't seem to know or understand my condition.
Hi Carol, I can feel your anxiety growing…so I hope you don’t mind but I’m going to suggest to avoid reading your blood work or at least ‘reading too much into your blood work’ and wait for your doctor’s interpretation. Often it’s so easy to take things out of context and fear the worst.
I know you’re concerned about seeing smudged cells and enlarged platelets. Smudged cells are basically cells that collapse and ‘smear or smudge’ while being prepped for a look-see under the microscope. The cells have weakened outer membranes and from my understanding, are very common in patients with CLL. Enlarged platelets, again from my understanding of seeing this in my own blood work, aren’t always of concern unless they are all large. Finding a few enlarged platelets in blood work can be a related to a variety of reasons. I remember being alarmed but they were of no consequence.
I think what will be important is the cytology report to see how well the treatment is working for you. Rituxin is one of the first line treatments for SLL/CLL. Because it’s an anti-inflammatory medication it might also help with the PG so that is likely why your doctor suggested the treatment. I was on Rituxin for a month and it was a life saver for me.
It doesn’t sound as though you have a great communication level between you and your oncologist. Not that she’s dismissive but she sure doesn’t sound like she’s willing to dig more deeply into your co-conditions or help you find answers to your questions That’s incredibly frustrating.
Is this a hematologist oncologist, a doctor who specializes in blood cancers? Are you able to find another provider for a 2nd opinion?
Hi Carol, I can feel your anxiety growing…so I hope you don’t mind but I’m going to suggest to avoid reading your blood work or at least ‘reading too much into your blood work’ and wait for your doctor’s interpretation. Often it’s so easy to take things out of context and fear the worst.
I know you’re concerned about seeing smudged cells and enlarged platelets. Smudged cells are basically cells that collapse and ‘smear or smudge’ while being prepped for a look-see under the microscope. The cells have weakened outer membranes and from my understanding, are very common in patients with CLL. Enlarged platelets, again from my understanding of seeing this in my own blood work, aren’t always of concern unless they are all large. Finding a few enlarged platelets in blood work can be a related to a variety of reasons. I remember being alarmed but they were of no consequence.
I think what will be important is the cytology report to see how well the treatment is working for you. Rituxin is one of the first line treatments for SLL/CLL. Because it’s an anti-inflammatory medication it might also help with the PG so that is likely why your doctor suggested the treatment. I was on Rituxin for a month and it was a life saver for me.
It doesn’t sound as though you have a great communication level between you and your oncologist. Not that she’s dismissive but she sure doesn’t sound like she’s willing to dig more deeply into your co-conditions or help you find answers to your questions That’s incredibly frustrating.
Is this a hematologist oncologist, a doctor who specializes in blood cancers? Are you able to find another provider for a 2nd opinion?
She is a hematologist oncologist. She is moving many states away and her last day at the hospital is this week. She will be doing telehealth and then flying back to town every. 3 months to see patients. She is probably overloaded with packing. children, selling and buying a new home, schools for her children. So patient care has probably slid down her list of priorities. There is another hematologist oncologist I want to switch to and will do so after my next telehealth visit with the current doctor. The factor worrying me most is her doubt in my condition. Trying to educate her seems a waste.
From my understanding smudge cells are due to low protein in the membrane that surrounds the lymphocyte. I can look at test results going back at least 5 years and it was not an issue until recent months.
I understand added medications such as the steroid and Rituxin will have an effect on many elements of our blood. The enlarged platelets are a concern because they can slow clotting which I noticed a few nights ago and also because I have already had a small stroke. I am facing possible major back surgery and no doctor in his right mind would do that if clotting is an issue.
Yes, I am a nervous Nellie and I was so spoiled by my previous oncologist who taught all over the US but he had the audacity to retire.
Doctors are human beings and have every day worries just like the rest of us. But a lack of understanding of a diagnosis and personal distraction don't inspire a sense of confidence. It doesn't feel right that I have to justify and explain my medical condition to my doctor.
Thank you for your words of encouragement. I think you understand much better than most doctors .
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Yes. I started treatment this past March. It a targeted and immunotherapy combination treatment of daily oral Venetoclax (Venclexta) plus 6 cycles of intravenous Obinutuzumab (Gazyva). The treatment is working well so far and side-effects are much lower than traditional chemo. There are options for treatments of CLL/SLL and every oncologist has their favorites.
I can’t get weblinks to go through on Mayo Connect yet so go to ChemoExperts.com and search for Treatment Regimen for Chronic Lymphocytic Leukemia (CLL) if you want more detail.
I can send you a lot more in the way of helpful resources once Mayo Connect allows me to.
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4 Reactionsabide:
Attached is the best resource for CLL/SLL I know of.
Understanding CLL/SLL - Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma
Understanding CLL:SLL (Understanding-CLLSLL.pdf)
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2 ReactionsHi @abide, in addition to the helpful information from @fortunateoldguy, I'm tagging other CLL members like
@normahorn @aleeab @marytheresacll @sue58 @remimor @mylove to share their treatment experiences.
If your chronic lymphocytic leukemia doesn't cause symptoms and doesn't show signs of getting worse, you may not need treatment right away.
@abide, is this a new diagnosis for you? What treatment is being recommended for you?
I am fortunate as I am in stage 0 and may never need treatment due to the deletion type I have.
Providing more information about your cll may elicit more responses.
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1 ReactionI have not had any treatment yet. White cell count is just below the rec'd range, but it has been stable at these levels.
I've been on IVIG since 2010. Developed Pyoderma Gangrenosum in about 2015 as a result of CLL. Underwent treatment with Rituxin and bendimustin then back to IVIG every 6 weeks. Have developed Pyoderma Gangrenosum again and now half way thru 4 weeks of Rituxin only to determine if it is effective. May be adding ibrutinib if Rituxin doesn't control sufficiently. Have been advised I may need Rituxin monthly. Guess I'll not be Stage 0 after this. Rituxin did cause some hair loss, thinning on top of scalp and have been using Men's Extra Strength Rogaine since '17. It has helped about 70%
I 67 years old and live in Canada. I was diagnosed with CLL in December 2021, so 2.5 years ago. From the begining smudge cells were present. Every blood test showed a rise in white blood cells and lymphocytes. Although I was told they would probably level out, they never did. Exhaustion was my biggest factor and always being very active was really denting my style as I could only do half of what I used to do and that was with a nap after any activity. I had swollen lymph glands everywhere. Finally in October 2023 I was told I had high risk cll with poor prognosis.
I have:
chromosome 17p deleted
TP53 variant identified
IGHV hypermutation
status: unmutated
In april 2024 I finally had a CT scan which is leading to more tests particularly on my thyroid which shows some large nodules. I will see a specialist in September.
On April 17, 2024 I started on Alcalabrutinib, or Calquence. With three more bloodchecks, the WBC count and Lymphocytes continued to climb but at least my lymph nodes were not as swelled . Finally on June 5, the numbers started to decline. They are still very high but at least are going in the right direction. I remain very tired. The joint pain increased, sometimes i feel itchy and my lips get very dry so i do keep them moisturized. I am going for another appointment next week so will see how my numbers are at that point.
I hope this information is helpful for some people out there who have just started their cll journey. And here is hoping that your numbers do level out and never reach the point of needing treatment!
Just had labs and 3rd infusion of Rituxin. My absolute doubling time was 3 months. The lymphocyte levels remain unchanged, at a high level.
The oncologist said the lymphocyte levels may remain as my new normal. The pyoderma gangrenosum has stopped its growth.
The oncologist stated she would not have begun therapy but her discussion with my dermatologist made her agree to begin Rituxin. She does not seem to understand or acknowledge there is a connection between PG and CLL nor is there a need for treatment. I have sent her articles from medical journals but I don't know if she reads them .
Last week her PA said normal therapy is 4 weeks of Rituxin then go to monthly. The oncologist seems to be planning the 4th infusion then a blood test to see if treatment is warranted . I asked if my IVHG was mutated or unmutated and she didn't answer, just said she was going to run a flow cytometry test again .
Last evening I got results from a manual reading of the most recent blood test and smudge cells remain at 2+ (more than half the lymphocytes are smudged) and now it says my platelets are enlarged .
I'm not sure what that means but it can't be good .
I am very confused and don't know what to do. The oncologist doesn't seem to know or understand my condition.
Hi Carol, I can feel your anxiety growing…so I hope you don’t mind but I’m going to suggest to avoid reading your blood work or at least ‘reading too much into your blood work’ and wait for your doctor’s interpretation. Often it’s so easy to take things out of context and fear the worst.
I know you’re concerned about seeing smudged cells and enlarged platelets. Smudged cells are basically cells that collapse and ‘smear or smudge’ while being prepped for a look-see under the microscope. The cells have weakened outer membranes and from my understanding, are very common in patients with CLL. Enlarged platelets, again from my understanding of seeing this in my own blood work, aren’t always of concern unless they are all large. Finding a few enlarged platelets in blood work can be a related to a variety of reasons. I remember being alarmed but they were of no consequence.
I think what will be important is the cytology report to see how well the treatment is working for you. Rituxin is one of the first line treatments for SLL/CLL. Because it’s an anti-inflammatory medication it might also help with the PG so that is likely why your doctor suggested the treatment. I was on Rituxin for a month and it was a life saver for me.
It doesn’t sound as though you have a great communication level between you and your oncologist. Not that she’s dismissive but she sure doesn’t sound like she’s willing to dig more deeply into your co-conditions or help you find answers to your questions That’s incredibly frustrating.
Is this a hematologist oncologist, a doctor who specializes in blood cancers? Are you able to find another provider for a 2nd opinion?
She is a hematologist oncologist. She is moving many states away and her last day at the hospital is this week. She will be doing telehealth and then flying back to town every. 3 months to see patients. She is probably overloaded with packing. children, selling and buying a new home, schools for her children. So patient care has probably slid down her list of priorities. There is another hematologist oncologist I want to switch to and will do so after my next telehealth visit with the current doctor. The factor worrying me most is her doubt in my condition. Trying to educate her seems a waste.
From my understanding smudge cells are due to low protein in the membrane that surrounds the lymphocyte. I can look at test results going back at least 5 years and it was not an issue until recent months.
I understand added medications such as the steroid and Rituxin will have an effect on many elements of our blood. The enlarged platelets are a concern because they can slow clotting which I noticed a few nights ago and also because I have already had a small stroke. I am facing possible major back surgery and no doctor in his right mind would do that if clotting is an issue.
Yes, I am a nervous Nellie and I was so spoiled by my previous oncologist who taught all over the US but he had the audacity to retire.
Doctors are human beings and have every day worries just like the rest of us. But a lack of understanding of a diagnosis and personal distraction don't inspire a sense of confidence. It doesn't feel right that I have to justify and explain my medical condition to my doctor.
Thank you for your words of encouragement. I think you understand much better than most doctors .
Have a happy 4th and a relaxing extended weekend!