Medication

[Createdpath]

What is your drs regimen for cll? My dr says no chemo when the time comes I will take pills.

[Kvb-texas]

Yes, likely to be a BTK inhibitor. I take Calquence (acalabrutinab) with zero side effects. I was very surprised that I had no reactions. So, don’t worry too much about it, there are several excellent treatments. I wish you well. KVB

[Createdpath in reply to Kvb-texas]

Thank you.

[Dexterdoggg]

My doctor and I discussed Acalabrutinab or Venetoclax and Obinutuzumab. My choice from the beginning was V+O because of my age and wanting the keep the BTK inhibitor for later in life. You can check out some of my recent posts to see how my treatment is going.

[richutchens]

I concur. No chemotherapy.

[stevesmith1964]

HiI went straight to 6 cycles of Obinatuzamab at diagnosis with daily Ibrutinib. Now on twice daily acalabrutinib. Was in remission 240 after diagnosis.

On acalabrutinib until it stops working.

[peghip]

Chemotherapy is quite a harsh treatment with side effects that can be restrictive. The newer treatments are just as effective with few side effects. What can be hard to understand with CLL is the lacknof urgency ti treat early like other cancers. There are people who are diagnosed with CLL who go for years without requiring treatment. There us no detriment to the effective treatment of the condition. In fact it can be beneficial.

[wizzard166 in reply to peghip]

Hey Peghip

It's really not that hard to understand the decision to not treat it.

It does go against all logic not to treat immediately, when looked at on the surface. In fact when I was diagnosed four years ago, and found this site we are so lucky to have, I started posting angry things about this Watch and Wait. Then various members kindly educated me. In essence we can live pretty normal lives with CLL and no treatment, and many people with CLL live out their lives with never having gone on treatment. One of my Medicare clients is now 85 and was diagnosed CLL twenty five years ago, and has never gone on treatment.

The various treatments can be deadly. Chemo of course is much worse in that respect than the Novel Targeted Therapeutics (The Pill). The Pill however does have a myriad of potential side effects, which when you read the list makes you hope you never go on it. Again Chemo would be much worse. So basically the common sense decision by good CLL doctors is to keep you off of either type of treatment; unless, there is no choice. Other than getting more tired more easily, CLL doesn't seem to be adversely affecting me so far. The CLL doctor watches your Red Blood Cell Count (availability of Hemoglobin to get Oxygen to your cells), Platelet Count (ability to clot your blood and not bleed out), and frequency of infections (our immune systems are shot to ......). If any of those factors are becoming an issue, then they start treatment; of not, be happy.

Carl

[The-Man-with-a-Plan]

CPThat's exactly what my CLL specialist told me 3 years ago. I agreed with him completely then and still do now.

MWP

[wizzard166]

Hey Created Path

My understanding is that the old treatment was Chemo, which can be quite deadly, and we all got a blessing when Dr Jennifer Brown brought Imbruvica to approval by the FDA. Imbruvica, or the pill, then became the method of choice in most cases. It has potential side effects, some of which can be quite damaging, but many who take it do not suffer the worst side effects. Now other "Novel Targeted Therapeutics" have been and are being developed, and which one is used, from what I gather, has to do with which specific gene mutations we all have.

From the reading I've done on this subject, it also seems to me that younger people might still go the route of Chemo. When I say younger, I think the average age at diagnosis for CLL is around 65, but I've seen posts on our site from those in there 50's and even a rare few in the 40's. Younger people can tolerate Chemo better, but it also I think has to do with being Cured. Supposedly there is no cure for CLL, but I have read that younger people who go through Chemo have reached what could be considered a total cure. You cannot do that with the pill. I'm a good bit older, I'll reach the three-Quarter Century mark on March 30, so I know I'll go on the pill when and if I go off of Watch and Wait.

I hope you are with a good CLL Specialist, and that cannot be over emphasized. As I mentioned the gene mutations, that we all have some of, can dictate which specific treatment will work or not work. Top CLL Specialists are on top of running and analyzing the specific blood studies, and their timing of when to go off Watch and Wait and go on treatment can also mean a lot to our success. I see you are in the US like me, so if you need help to locate what might be considered a top CLL Specialist I'll do that. If a person has the type of insurance that permits them to go anywhere in the US, and they can afford the six-month trips if out of the area they live in, then I strongly feel it's a wise idea to do so. Of course, some of us live close to those top Cancer Centers and their CLL doctors. I choose to travel from South Florida to Boston to see mine.

One last thing with the Chemo versus the pill question has to do with insurance. If a person is on Medicare, they have a chance to pay absolutely nothing for Chemo Treatments, if they have a good Medicare Supplement. That is because Chemo goes through Medicare Part B. The Pill unfortunately goes through Medicare Part D, and the typical expense for the Pill through Medicare Part D is around $14,000 per year. On other insurances for the young people, it isn't as bad, depending on the Total Max Out Of Pocket on their plan. The ACA plans unfortunately (also known as Obama Care) have a Total Out Of Pocket this year of around $8,800. There are however many people on Employer Health Plans, and some of those better plans have lower Total Out Of Pocket Max of between $3,000 and $5,000. Prescriptions typically count toward the Total Out Of Pocket Max on most Non Medicare plans, so that gives those people better protection than for those of us on Medicare with the Pill.

Carl

[SERVrider]

For what it may be worth, my cousin's husband, Serge, was diagnosed 13 years ago at 48 with CLL. The treatment then in Belgium, as in the UK, was the traditional FCR so he had a pretty rough time during the treatment. He has been uMRD since but has annual blood checks to make sure.

I was diagnosed in 2019 and would have been on Obinutuzumab and Chlorambucil but that was deferred because of the predicted Covid peak coinciding with my most vulnerable immune system. My haematologist was then able to get me onto Acalabrutinib, off-licence, on a compassionate early access scheme. Since it has been licensed by the MHRA, I now get it in proper, trademarked, "Calquence" boxes. I guess Serge will be on a second generation BTK inhibitor should his CLL become refractory.

[Detroit22]

Well I have only met with the NP but I’m sure chemo pills will be given.

[CLLCalifornia-USA]

Hi Created path,I had chemotherapy twice because at the time that was all that was available. I now have been on Ibrutinib for over 5 years and am doing great. I am unmutated, so not really a good candidate for chemotherapy, but it worked until something better came along. Best of luck. Sally

[scarletnoir]

When I was diagnosed in 2011, chemo was the only option... but the docs did have a choice and decided on a slightly less aggressive form (BR, not FCR) because of my age... it was tough (9 days in ICU when WBC crashed, bad skin rash etc.) but I came through and have been in remission ever since... not everyone is so lucky, by any means.

Nowadays, treatment with pills is far more common - less dangerous - but not always leading to remission, and also with side effects for quite a few.

The reality is that the docs are still finding out which treatments work best for which patients, as we're all different - and CLL itself comes in very many different forms! Knowledge is improving all the time, the number of possible treatments is increasing - but there's still a way to go before there is a complete understanding.

Another unforeseen outcome is that there is evidence that some of the modern pill treatments make it harder for the body to produce antibodies after an anti-COVID vaccination... so that's something to be aware of, WRT taking anti-COVID precautions. There are multiple links in this report from a UK leukaemia charity - the University of Birmingham study has focused specifically on CLL patients, not other forms of leukaemia:

bloodcancer.org.uk/support-...