CLL - newly diagnosed

I am a Canadian[ Calgary] and have been diagnosed with CLL.Will have more tests and will meet with a specialist in August. I am hoping my situation will be a slow motion CLL. I might have jumped then. I came across an outstanding interview with a Dr William Weirda the head of leukaemia at the MD Anderson Clinic . It was centered on treatments . From what I saw Chemo is very seldom used at that clinic. They have a number of inhibitors which seem to very effective in controlling CLL. They also use Venetaclox in conjunction with the inhibitors. If I need treatment and they want to use chemo I will be seeking a second opinion from either Mayo or MD Anderson . May-be I am jumping the gun. Any advice as to the cost of a second opinion this is not covered by insurance. It looks like a full second opinion from MD Anderson would be in the hundreds and wouldn't likely exceed a $1000. Any advice or suggestions would be appreciated .

Just diagnosed with CIL . I live in Canada. I have more tests and a visit with the cancer center in Calgary. I did check MD Anderson on how CIL is treated and found them excellent in giving me the latest on how this cancer is treated. They make clear that chemo isn't part of their approach. They use BTK inhibitors and in some circumstance veneoclox [ not sure on spelling] . Anyways if when I meet with my specialists and he/she says I need treatment and it is chemo I intend to get a second opinion from Mayo o MD Anderson. I will have to pay for such with my credit card. I figure the Calgary center is pretty current on treatments but one can't be too careful. I am 78 . Any input, advise, information or suggestions will be well received . I spend my winters in Texas so MD Anderson is in a better location for me. Mayo and Md Anderson bare both top level centres.

Just diagnosed with CIL . I live in Canada. I have more tests and a visit with the cancer center in Calgary. I did check MD Anderson on how CIL is treated and found them excellent in giving me the latest on how this cancer is treated. They make clear that chemo isn't part of their approach. They use BTK inhibitors and in some circumstance veneoclox [ not sure on spelling] . Anyways if when I meet with my specialists and he/she says I need treatment and it is chemo I intend to get a second opinion from Mayo o MD Anderson. I will have to pay for such with my credit card. I figure the Calgary center is pretty current on treatments but one can't be too careful. I am 78 . Any input, advise, information or suggestions will be well received . I spend my winters in Texas so MD Anderson is in a better location for me. Mayo and Md Anderson bare both top level centres.

lancaster1963:

A few suggestions:

1. Don’t be in a hurry to get treatment. Seek a second opinion as CLL is generally a very slow growing and non-aggressive cancer. Some people never need treatment, and some don’t need treatment for many years. You may outlive it. The standard of care is the watch and wait approach where your doctor will monitor patients signs and symptoms with frequent labwork, imaging, genetic and immune testing. If your doctor and you both feel it’s time to treat then look at treatment options other than chemo.

2. Chemo is more affordable to government run health care programs like Canada’s than the more costly but more effective targeted and immunotherapies offered today, but chemo often comes with a higher toxicity profile and can be less effective.

3. If you seek treatment outside Canada you may not get reimbursed for treatment in the U.S.

4. I have SLL (same as CLL but predominantly in the lymph system vs. blood) for many years and declined to the point that my oncologist recommended treatment. I started oral Venetoclax (Venclexta), a BCL2 inhibitor, plus infusions of Obinutuzumab (Gazyva), a CD20 inhibitor, immunotherapy and targeted therapy two months ago and my bloodwork and all my symptoms dramatically improved within the first two weeks. This therapy has the highest rate of deep remission and lower levels of residual disease for CLL/SLL according to my oncologist. Other doctors may argue that point.

5. If you seek treatment in the U.S., you are facing a huge cash outlay. Venclexta will run $12,000 USD the first month and $12,000 to $18,000 USD for the following 11 months for a total of $150,000 to $200,000 USD. Gazyva runs $40,000 USD per infusion x 8 infusions = $320,000 total. On top of that, frequents follow-up labs and doctor visits are required which adds more cost. I’m well insured, so I’m OK, but I couldn’t pay all this out-of-pocket.

6. All said, you’re looking a a full year of treatment and follow-ups, so your winter in Texas may be a year instead. Ask your doctor why they won’t offer you targeted and immunotherapy?

Good luck.

My experience at a big Ontario Cancer Centre is that they've never suggested chemo for my stage 4b prostate cancer, even though my meds cost above CA $6,000/month.

As far as I know, provincial health plans can't penalise doctors for recommending more-expensive treatments *or* reward them for saving money — they all bill the same — so I'm not sure what their motivation would be to push a patient towards a cheaper treatment if a better one is available.

Access to a specific drug, or its pricing to the patient, likely depends on if the drug is in the drug formulary in the first place and what tier level it is in.

I had to switch Medicare Part D (drug) plans here in the U.S. to get my cancer drugs covered as my old plan didn’t include Venclexta or Gazyva. If I hadn't switched plans I likely would have to resort to chemo that is covered or pay for Venclexta or Gazyva out-of-pocket. These are both tier 5 drugs.

The side effects continue. As long as possible my husband says he’ll deal with them. At some point we will have to face chemo. Doc says we will have a decent runway on that option. We are just trying to deal with the intestinal issue, fatigue, and splitting fingernails. Helps to know we are not alone.

Hi Tina, you’ve had a heck of a day. I know this isn’t the news you were hoping for but you have options for a long and happy life ahead of you. Your chronic lymphocytic leukemia, as you’ve so perfectly said, pretty much trashed your marrow. Bone marrow is the home of the immune system and when it becomes completely compromised, so does your health on every level.

You now have the option of a valuable treatment ahead of you which will potentially save your life, giving you hundreds of sunsets and sunrises, holidays with families and friends…the gift of time…the gift of hope.
In doing a little research, Ibrutinib is very much the standard treatment for CLL. It’s a a medication designed to stop the progression of CLL. As with any medications there are potential side effects but most people experience very little. The 40 year old young father who lives next door to me is on it and doing really well. You’d never know he has CLL.

You’re fortunate in that you’ve had a significant time span where there was no need for treatment. CLL takes many years to develop and get to the point where it is no longer safe to delay being proactive. I had AML with several mutations. I had no time. I was diagnosed in the hospital the night I was admitted and barely made it to the next morning. The subsequent chemo I was on, along with abrogating meds, the bone marrow transplant and all of those meds I would gladly have exchanged for simply taking one medication. ☺️ We don’t always get the luxury of being able to decide when and how we change our lifestyles.

We’re often our worst enemies when it comes to making changes and facing the unknown. You’re used to your life as it is now. But within 3 months it is inevitable that you will be asked to make change if you want to have any chance at longevity. If you don’t start the treatment, you’ll decline in health and will eventually become quite ill. If you do start your treatment, you’ll have a chance for many more healthy decades! And it’s also better to begin treatment before the disease progresses to the point where it can’t be managed as easily.

A second opinion is always an option. Do you feel a level of comfort and confidence with your oncologist? If so, I think you can trust her judgment on the decision to start you on this medication. If you experience side effects there are other meds available. Ibrutinib has been used for several years with statically excellent results.

So my suggestion is to go into this without fear and dread. But keep the positive thought that this is going to extend your life! Your current lifestyle may not even be interrupted while taking this medication.
I’ve been to heck and back with statistically bad odds in the beginning. I’m living proof there is better living through chemistry. LOL. And I’ll continue to be here for your spot of therapy. ☺️

What is it you fear the most?

Yes, I certainly had many of the common CLL/SLL signs and symptoms. Intense fatigue and tiredness, frequent night sweats, swollen glands, painful spleen (although not enlarged), itching that wouldn’t go away when scratched, unexplained bruising, shortness of breath and off-the-chart WBC and lymphocyte count along with a shrinking platelet and RBC count.

One of my sisters also has CLL (possibly SLL but she refuses to get her lymph nodes biopsied) and I lost an older sister to aggressive acute lymphoblastic lymphoma. I take quiet issue when doctors say leukemia or lymphoma isn’t hereditary.

Like most oncologists, mine followed published guidelines and recommended the watch and wait approach with follow-up visits and lab work every 3-months. I also received a CT scan, lymph node biopsy, bone marrow biopsy, flow cytometry and a FISH CLL panel. Finally, after close to a year of watch and wait he felt treatment was a worthwhile next step.

The wait was most definitely worth it so far. All the above symptoms diminished or totally disappeared in the first 10-14 days. The Gazyva treatment dropped my WBC and lymphocytes counts from extremely elevated to slightly below normal within 36 hours after the second infusion. It worked so fast that I received repeat bloodwork very often to monitor for tumor lysis. I only had infusion reactions on infusion days 1 and 2 and was fine after that.