on watch and wait for 6 years. Numbers are going up and doc this treatment is coming

[elm1]

So what have people been taking for first time treatments. My numbers are going up and it seems that treatment will be inevitable. My doctor suggested a combination of obinutuzumab and venetoclax or zanubrutinib. I'm 72 years old and otherwise in good health. No symptoms yet but increasing WBC I'm wondering what the pros and cons of each are. My doctor likes the infusions because after a year you're done. And your immune system kicks in after 15 months. With the pills your immune system is always down. I appreciate any input. Thanks!

[Swissnology]

Has somebody who is on watching wait for 8 years. I wish I'd took treatment sooner I feel so much better. So going to it the right way Go into it knowing that you will feel better not the opposite

[elm1 in reply to Swissnology]

So far I'm feeling great. I have no symptoms. My WBC has been consistently going up so my doctor things at some point I'll need treatment. Im thinking when the time comes I do the infusions but I'm scare of tumor lysis syndrome

[Skyshark in reply to elm1]

You have to drink plenty on each dose increase to keep the kidneys flushed. Abbvie say 1.5L to 2L but more is better.

They will give you Allopurinol or Rasburicase to help prevent the crystals forming.

[elm1 in reply to Skyshark]

Thanks sooo much for responding. After reading so much it is a fear I have. And sometimes think I should just take oral medication. Is tumor lysis just something you can get at the beginning of infusions or is it always a possibility

[Skyshark in reply to elm1]

TLS is very rare but something you can get on the first infusion of Obinutuzumab and on each dose increase of Venetoclax with highest risk on the first 20mg and 50mg doses. They will take blood samples and treat any problems. If you are considered high risk they will bring you in as an inpatient and take more frequent blood samples for these 3. The blood tests are "real time" and they have to be at a hospital that can do the analysis.

It's worth asking where treatment will be. I had to switch to another hospital in the trust that had the labs.

Infusion reactions are far more common on first IV of Obinutuzumab. Last summer the cancer alliance that my hospital is part of introduced a slower IV rate for those at high risk. 4 months too late for me.

[elm1 in reply to Skyshark]

Thank so much. I appreciate your info.

[LeoPa]

The answer depends from your markers, mutational status and fish test results. Some start with O+V, others with I, A or Z.

[elm1 in reply to LeoPa]

I’m 13q mutated. The last fish was 6 years ago. They’re repeating it. I hope I can put this off as long as possible but during the last year my wbc has been going up

[LeoPa in reply to elm1]

Copy. If you change the title to "13q Mutated, what's my best first treatment option?", surely many will chime in with advice.

[elm1 in reply to LeoPa]

Thanks sooo much

[FloridaGal2 in reply to LeoPa]

Interesting my dr said that they don't don't worry so much about the fish test any longer with the new treatments you choose either the fast and furious 1 year treatment or the pill you take every day which he compared to like routine blood pressure medication...

[elm1 in reply to FloridaGal2]

My doctor said that I may be having some sort of mutation and would just like to check. I think when the time comes I'll chose the infusion.

[LeoPa in reply to FloridaGal2]

Not exactly. There is a subgroup of patients which does better on a BTK inhibitor. If I recall correctly it's the 11q ATM group. At least that's what I recall reading on this site.

[Big_Dee]

Hello elm1

Deciding which treatment to take is a personal decision, I preferred the time-limited V&O rather than taking a pill forever. Blessings.

[elm1 in reply to Big_Dee]

thanks. It was just that tumor lysis thing that scared ne

[Big_Dee in reply to elm1]

Hello elm1

The tumor lysis is a concern with most of the treatments, going back to my B+R treatment. Tumor lysis is now routinely evaluated before giving treatment and is based on one's tumor burden at start of evaluation by CLL professionals. Patients are closely monitored during treatment ramp-up. My tumor burden did not require monitoring with either B+R or V&O. I would however advise all to have a companion with you for first infusion of Obin. I had anaphylactic shock during my first Obin infusion and infusion nurses need to be notified right away. After first infusion everything was ok. Blessings.

[elm1 in reply to Big_Dee]

Thanks for your input. I appreciate it. I’ll bring my boyfriend. How are you now and did it do the trick??

[Big_Dee in reply to elm1]

Hello elm1

I just had my second 1-1/2 month checkup today, since finishing one year of V&O. I could be doing little better in RBC and hemoglobin, but that is normal for me. I had port installed for my Oblin infusion which was great, but did have some problems with port blockage during port flush. All is well that ends well. Blessings.

[elm1 in reply to Big_Dee]

Did you get a remission?

[Big_Dee in reply to elm1]

Hello

Yes, I made it into in remission in less than a month of Oblin. My case was a little different as my lymphocytes were only at 42K when I started V&O because of massive abdominal lymph nodes and very aggressive CLL with possible Richter's Transformation. Turned out I did not have Richter's Transformation but lymphocytes were doubling every 2.5 months. Even with as aggressive CLL has I have, V&O works very well.

[Adlucy]

Hello elm 1. I started treatment last year when I was 75 after less than three years on Watch and Wait. CLL was suspected in 2019 (although my GP didn't say this) and was formally diagnosed a year later in 2020. My consultant warned me that because I am both TP53 mutated and 13 q deleted, it was likely I wouldn't be on W&W for long. I was offered a choice of treatments but it was obvious that he wanted me to go for Venetoclax and Obinutuzimab, which I did.

I felt positive about the infusions on the basis that because you are so closely monitored, should you react in some way, help would be immediate whereas if you took a tablet and then suffered a reaction, there would be a delay in getting the necessary help.

I look closely at my blood results and realised myself that it was probably time to start treatment so when the consultant said now, it wasn't such a shock.

[elm1 in reply to Adlucy]

Thanks so much for your reply. Were you symptomatic or was your blood work off so much that they started treatment? And how are you feeling? I’m 72 and feel great. So far!!

[Adlucy in reply to elm1]

I'm not really sure what being symptomatic is. My haemoglobin was in the red as were my platelets. It was the lymphocytes doubling in six months that was the trigger to start. I didn't have any nodes. The first O infusion was over two days. I didn't feel anything until early afternoon I was cold (I thought it was the effective air conditioning) and I had lower back pain. When I got home, I was very tired and slept for England. The next day I had no effects from the infusion at all. In fact I had lots of energy almost as if bad stuff had been washed away! I didn't have any effects at all from subsequent infusions and have tolerated the Venetoclax and other drugs ok. In fact I have felt better than for ages untl I got Covid for the first time last month which has dragged me down.

[elm1 in reply to Adlucy]

Wow. Sorry you got covid! Thanks for telling me your experience

[Adlucy in reply to elm1]

I think sharing helps especially the personal rather than the scientific! I found the infusion days very relaxing to be honest. I slept most of the time!

[elm1 in reply to Adlucy]

Good to know!

[Pacificview]

Currently on O and V, 2 more months to go. Already MRD negative in the blood.If I had it to do over again, I would just take a btk daily like Acalabrutinib. The is my reasoning, I was really wanting a treatment break. Take a doublet and then be done for a few years. I figured that I would be in the group that would have little to no side effects from O and V. Turns out I was wrong and those side effects have really effected quality of life this last year. Once I started O and V, I was comitted to it. I did not want to switch treatment and waste a proven therapy. Now, if I had started with a BTK and I had misserable side effects. I would have stopped the BTK and tried another treatment like O and V etc.

But, the side effects have been manageable from O and V. Never admitted to the hospital. Never needed Neutrophil or platelet help. So aside from pesky side effects that have been inconvienent. Apparently the treatment protocol has been effective, inspite of my whining.

[elm1 in reply to Pacificview]

It seems like everyone thinks O+v is the way to go

[Skyshark]

My WBC dropped from 123x10^9/L to under 7 in 5 days on first dose of Obinutuzumab. Been fairly stable ever since with a blip up to 12 at start of cycle 2. The blood alone can't be used to declare remission, that requires all lymph nodes less than 1.5cm, spleen normal size less than 13cm and bone marrow clear. My lymph nodes took a while to go, although reduced by first 3 doses of Obin they didn't reduce enough by start of Ven. Couldn't feel any in neck at week 5 but it was cycle 5 before I had a CT to confirm.

Bloods chart - log scale

[elm1 in reply to Skyshark]

sounds like this works! Did you have any side effects

[Skyshark in reply to elm1]

No side effects. An infusion related reaction in first 5 minutes on first 100mg dose of Obinutuzumab. They had to cut the rate in half, it took 8 hours + time out while they did a blood test, then gave me some more meds before restarting. Started after midday due to 4 hour wait after initial Rasburicase, finished at half past midnight. Temperature spiked to 38.1°C ( 100.6°F) twice. I was an inpatient and got initial Rasburicase due to high lymph count and size of lymph nodes making me "high risk TLS".

Day 2, 900mg dose of Obinutuzumab was no problem at all.

Take a bag packed for a 3 night stay on each treatment for first 2 cycles.

There are two grades of TLS, laboratory and clinical. Laboratory is when blood test results show abnormal levels of potassium, calcium and other indicators. Clinical is when symptoms of TLS appear. They will give Rasburicase at a higher dose than initial and my understanding is that this will clear up a case of laboratory TLS quite quickly.

They give you IV fluids, Allopurinol and/or Rasburicase to convert the compounds in the blood that cause TLS to ones that don't crystallise. You have to help this process by drinking water to flush it out. I may have overdone it at 5 litres a day while on the ward, they had to give me some potassium.

For a bit more confidence you can ask your healthcare team how many they have given this treatment to, number of cases of lab and clinical TLS. The risk exists, they have to tell about it so you can give "informed consent" for the treatment.

[elm1 in reply to Skyshark]

Sounds like a lot but if it works it’s worth it.