Calquence

[1reb]

I just was diagnosed with sll after getting an mri on my back for back pain showed a swollen lymph node on my spine. Ct and biopsy showed sll. I am supposed to get a pet scan this week and then start calquence. I am normally a very active person and am wondering what my tolerance to physical activity may be. Also looking on internet it appears this is an extremely expensive drug. I have medicare and a supplement and was wondering if anyone has experience with real world cost of treatment

[cajunjeff]

Hello 1reb. I have been on Calquence about three yrs now and was on ibrutinib for a couple of years before that. I do not find that calquence or my cll limit my physical activity in any meaningful way. I walk about 5 miles a day. I do a little mixed dumbbell/pilates/yoga workout every other day. I play golf a couple times a week. I just got back from a month vacation in the mountains where I hiked or biked most every day.

With social security and prescription part D coverage, I used to pay about 12k annually out of pocket for calquence. The law changed recently and now I pay a lot, lot less, I forget how much though.

One swollen node on your back would normally not be an indication for treatment, many people go for years with swollen nodes here and there before treating. If you have extensive lymphadenopathy or a very large node or other issues with your labs, treatment might be indicated. Before you treat you might ask your doctor to walk you through what treating criteria you meet. If you are not seeing a specialist, a second opinion might be a good idea before treating.

Sll presents a bit differently than cll with sll being more in the lymph nodes than in the peripheral blood. My guess is that your doctor wants a pet scan to see how prevalent cll is in your nodes and will be guided by the results of your pet scan to decide whether to treat now. Good luck to you. Calquence for me has been kind of a miracle drug, controlling my cll with a couple pills a day with minimal side effects.

[1reb in reply to cajunjeff]

Thanks for the good report. I love to hunt and fish and the wife keeps me busy working in the yard. We always plant a large garden and freeze or pressure can quantities of fruits and vegetables every year. Every day has some sort of activity in it. Just hoping i can continue. The node on my spine is pretty big, about 1.75 inches by 3 inches and could be the source of my back pain although could be problem from when i fell 18 feet and broke my back 7 years ago. Ct showed some number of other swollen nodes but none real big but the one. Biopsy showed sll. Pet scan this week should show more info and anticipate starting calquence shortly after

[Newdawn Administrator]

Hi 1reb, it could be they intend to await the result of the MRI before making a final decision on starting treatment. On the face of it as @ cajunjeff observes, you don’t appear to meet the formal criteria for starting treatment but obviously we only have limited information. However, the criteria includes ‘Symptomatic or functional extranodal involvement’ which includes the spine. This could be compelling reason for starting treatment. It trumps general lymphadenopathy or even very oversized nodes because it’s important to address spinal infiltration quickly.

Being from the U.K. I can’t advise on funding but wish you well should you need treatment. I’m due to re-start treatment on Thursday with Zanubrutinib.

Newdawn

[1reb in reply to Newdawn]

Right now seeing the specialist that my surgon that repaired my back recommended. I really like my surgon and the specialist he recommended is who he said that he would go to if he had any kind of cancer. For now gonna trust specialist and do whatever he recomends

[Newdawn Administrator in reply to 1reb]

Always good to have someone you trust. I understand back problems having severe spinal stenosis and it’s no fun! ☹️

Newdawn

[Mumu1]

Hello! Cajunjeff gave already provided quite a few answers. I just wanted to add to his mfg regarding the cost of the drug in the US: The $12k that he mentioned sound about right for calquence prior to the changes effective 2023: there is now a cap to the annual out of pocket expenses for drugs of $5k, and in 2025 that will be further reduced to $2k!

Note: there are a lot of programs out there (foundations, manufacturers assistance) that may provide the medication for free. Check with your Doctor or hospital for example.

Also: Medicare supplement plans typically do not cover drugs. You need to have a Part D Plan, also if you qualify for assistance.

With Medicare and a supplement, the cost for treatment should be covered. I never encountered a case where payment was denied, provided that the provider accepted Medicare.

All the best to you on your Calquence journey!

[1reb in reply to Mumu1]

Thanks for the info

[Mahunny in reply to 1reb]

Astra Zenca (manufacturer) covered my entire out of pocket cost for Calquence. I have a $26k assistance limit per year. My portion not covered is $150 per month, so they cover it 100%.

[Teethgirl in reply to Mumu1]

What’s the OOP max if you’re not Medicare? Idk the answer?

[Mumu1 in reply to Teethgirl]

Hello Teethgirl,

Sorry, but all I know you find in here:

FACT SHEET: President Biden Takes New Steps to Lower Prescription Drug and Health Care Costs, Expand Access to Health Care, and Protect Consumers | The White House , see link below:

whitehouse.gov/briefing-roo...

[uide3095]

Hi welcome to the club, not one you wanted to join but always advice and experience on here.

I was diagnosed with SLL December 2020, after the initial shock and fears my Acalabrutinib started February 2022.

I continue to go to the gym twice a week and a PT every Saturday morning who really puts me through it. Ive had no adverse effects to the treatment or had to change my training regime.

I am 64 now and just keep focusing on what I’m doing but at the same time keep an eye on how I feel and try and eat as healthy as I can.

I have also been on a trial based on fitness and the benefits of exercise and taking it to an added level above what I was already doing. It was called HIT-CLL Study and was actually started in the US, I am in the UK by the way, but if you google it you may be able to find it.

Good luck and I hope all goes well for you

Will

[BigfootT]

1reb, I have SLL too and like you it was an unrelated CT that started to hint at SLL. After 3 CTs spaced months apart, an MRI of my neck and FLOW + a lymph node biopsy they diagnosed SLL/CLL. The local oncologist ordered a FISH and then a PET....I think he was concerned about Richters. Anyway, right before the PET I got to Sloan Kettering and a specialist. When I mentioned the scheduled PET there was nearly a chuckle in the room. She had me do it anyway....I sensed she didn't want to cancel the other doctors order, but when the results came back they quickly called and said the results were as expected. Some cancer activity, but all below concerning level.

I have to say the PET was nerve wracking. Every test to that point was bringing bad news and I was fearful the PET would find more. It ended up being the only test that didn't bring more bad news.

Bigfoot

[1reb in reply to BigfootT]

Thanks for your reply. Everything going so fast it seem. Going to doctor for mri on my back due to pain that i assumed was from when i broke my back only to find out that i have cancer has kinda thrown me for a loop. Hopefully pet scan this week has no more bad news

[Bobby9toes]

Welcome to the group. I, too was recently diagnosed with SLL in December and started Calquence in January. Yes, it is a very expensive drug. I am also on Medicare with an advantage plan. Unfortunately my income doesn’t qualify me for financial help. I was told that a bill was passed here in the US in January that would cap our out of pocket at $8,000 per year. That’s what I expected to have to pay. After 3 months of paying my part after insurance and Medicare, I get it for free for the rest of the year. Not sure what happened, but I’m only out not even half the $8,000. I was told you can contact AstraZeneca and they often help people out with the cost. I couldn’t wait to start the Calquence due to the way I was feeling due to the SLL symptoms. I had horrible night sweats, no appetite and no energy. It was a miracle drug for me. I started feeling a lot better within a couple of months. I had another PET scan in June and am already in remission and feel back to my old self again. In the beginning of taking the drug, I experienced headaches during the night and mornings, but caffeine took them away. Thankfully, they didn’t last long. I will need to continue taking Calquence for life to keep it from coming back as there is no cure for this disease. Best of luck to you on this new journey. I wish you the same outcome as I had. Jan

[1reb in reply to Bobby9toes]

Thanks, fingers crossed. They just called with my pet scan appointment for this friday at 8 am. Assuming nothing extra shows up i am thinking doc will have me starting the calquence next week

[Bobby9toes]

Good luck. When you see your doctor after the scan, ask to look at it. It’s pretty interesting to see. In my case, I lit up like a Christmas tree. It was everywhere. My oncologist said I had a lot more involvement that she thought. When looking at my second one six months later, I could barely make out two or three. Calquence kills off those cancer cells very quickly. Be sure to drink plenty of water too. Those dead cells can build up at first and cause gout if you don’t flush them out. Let us know how your scan goes.

[CycleWonder]

I am sorry your back pain turned out to be an unexpected trek to an unwanted destination! The good news is that if your back pain is largely due to your new diagnosis, you will likely find the pain disappears pretty quickly once you start the new medication.

It is recommended that when you start this medication, you enjoy your coffee (or tea with caffeine) in the morning. The medication tends to cause headaches for the first several weeks - caffeine helps alleviate the headaches.

Try to drink plenty of fluids after your two cups of coffee to help your body flush out the lymphocytes. And for the first four weeks, get plenty of rest. Be careful in the heat and watch your exposure to sun. We are at higher risk of skin cancer. Find a dermatologist you like and get regular skin check ups.

I don’t know much about hunting but I think the hunting seasons will be starting up in the fall. Depending on when you start your medication, allow yourself a lighter exertion level until your body has gotten rid of a lot of your unwanted lymphocytes. Then you can ease back into your favorite outdoor activities.

[1reb in reply to CycleWonder]

Many thanks to everybody here for the helpful advise

[Islandjewel23]

Hi 1reb, lots of questions that other fine experts on this site can address. The well-versed experts here have helped me on a variety of issues. I can speak to the cost of Calquence, as I started on Medicare in July. I was extremely worried about the cost of it. As stated by others here, Medicare part D really is the way to go for meds. A Nurse Navigator at my oncologist’s office was able to find coverage thru Onco360, which is an organization that applies for grants to cover meds (I think that’s the way it works?) I applied with her assistance, and was notified that my cost for Calquence would be zero! I heard of Onco360 on the Facebook Calqence group. That group, as well as the CLL Society and this excellent site have supported my journey so well- you’ve come to the right place for support!

I wish you well on this journey,

Julie