How taxing is the role of caregiver during chemo?

[jimwilmes]

I'm 71 years old and retired, just completing 4 years of watch and wait, asymptomatic except for slowly declining Hgb and unstable platelet count. My FISH test was negative for trisomy 12, D13S319, p53 and ATM. My hemoglobin suddenly dropped from 9.2 to 7.8 over a six week period, and my hematologist is treating me with erythropoietin. She says that if we can't substantially improve my Hgb (at least get it back up in the 9's where it was before) I may have to start chemo, and it would probably last at least a month or two.

I'm a US expat living in Peru, and the only treatment that would be covered by my insurance here is FCR. My hematologist suggested that I would have more treatment options in the U.S., and since Medicare now caps medicine costs at $2000 for those who have Part D, and the quality of blood for transfusion is probably better controlled in the US, I would probably choose to do chemo there.

I have three children living and working in the US, two of them with children and with spouses who work. I have a sister and a brother about my age who have internet-based jobs and work at home. None of them live near each other. I've read a lot of different reports about how much work is involved in taking care of someone who's going through chemo, even some reports of people who have done it alone, and a lot of reports of people who continue working while doing chemo. I don't want to be a big burden to whomever I stay with during chemo. There's good public transportation in all of the places where my family members live, with reasonably short trips to a good cancer treatment facility. All of them are healthy people, but they have busy lives. Can I reasonably expect to complete chemo there without being a tremendous burden on one of them?

[cajunjeff]

Hello Jim. If you treat in the US, it is unlikely it would be with fcr or any other chemo therapy. The main two options in the US these days are venetoclax plus obinutuzumab or a single btk drug like calquence.

Everyone is different with cll so it’s hard to make blanket statements. That said, with either non chemo treatment you might need little or no help from a caregiver. I have been on a btk drug for 7 years now and do not need my wife’s help for anything Cll related. I drive myself to my appts in Houston. When I had a bout of hemolytic anemia, I did need my wife’s help then as I was probably too weak to drive safely in Houston traffic.

If you go the V plus O treatment route, You might need a driver on the few days you do yoour infusions. If you choose a btk drug, the odds are good you will not need much assistance at all with your therapy.

As a final note, if your only option in Peru is fcr and you do have the resources to treat in ther US, I would absolutely go to the US to avoid chemo. It’s not that fcr is a harsh therapy or that it doesnt work well. Chemo can be harder on the marrow and raise the risk of secondary cancers for some people. The newer drugs are just as effective with less risk of serious side effects for most folks. Good luck.

[jimwilmes in reply to cajunjeff]

Thank you, Jeff. That information is very helpful!

[lankisterguy Volunteer]

Hi jimwilmes,

I suggest we start with some terminology.

We usually do not refer to the modern targeted treatments for CLL as "Chemo".

Almost no knowlegable CLL experts in the USA would use FCR (and that is Chemo) for treating CLL.

So anything you read about Chemo and the physical effects don't apply to the targeted treatments.

The most common treatments used in the USA are BTK inhibitors (acalabrutinib/Callquence, zanubrutinib/Brukinsa or pirtobrutinib/Japirka) where you take one or a few pills each day and live your life normally. Side effects can happen but they rarely to almost never affect daily lifestyle.

Whether you can obtain the drugs in USA periodically and return to Peru might be possible. You may want to read the past posting by AmericanRonin who lives in Japan and obtained his BTK inhibitors in the USA.

You may want to read some of these past postings: healthunlocked.com/cllsuppo...

Please check the box on this page labeled Pinned Posts and read these:

*Newly diagnosed with Chronic Lymphocytic Leukemia or Small L...

*30 tips for living well with CLL (an update of "Coping Strat...

*12 TIPS to get more out of this CLL Support forum - and help...

>

Len

[jimwilmes in reply to lankisterguy]

Thank you, Len. I had read several articles at web pages of US cancer institutions about FCR treatment, so I thought it was still common. I guess I need to check the publication date of an article before deciding whether it's worth reading. You don't mention ibrutinib in your list of the most common treatments. Is it no longer used much? I read that it's one of the very few that's economical. I can afford to fly to the US and back each year, and pay the Medicare premiums and deductible and $2000 drug cap for Part D, but I can't afford anything like the $20,000 or more that I've seen quoted as annual costs for some of the drugs.

[lankisterguy Volunteer in reply to jimwilmes]

Ibrutinib/Imbruvica is fading fast from the scene as the other 3 drugs have fewer side effects and cost about the same. The retail prices are all in the $120,000 to $150,000 per year range but insurance brings it down to about $10,000 to $20,000 per year out of pocket for those on regular insurance. There are discount and subsidy programs usually funded by the drug companies that reduce the out of pocket costs substantially. So the retail prices are a myth- no one except billionaires & Saudi Princes pay retail.

Now, as you noted $2,000 per year out of pocket limit for we Medicare folks. I've been on daily treatments since 2012 with only a few short pauses and have had 3 different BTKs, but only paid $900 out of pocket one time in 13 years, the remainder were covered by copay assistance.

Dates are very important since Ibrutinb was only approved in 2013 and most of the others from 2016 (venetoclax/Venclexta), 2019 (acalabrutinib/Calquence), 2023 (zanubrutinib/Brukinsa) and (pirtobrutinib/Japirka)

Len

[Skyshark in reply to lankisterguy]

Short duration 48 weeks Venetoclax in combination with Obinutuzumab was FDA approved in May 2019. Intensive first 9 weeks with possibly multiple clinic visits a week and up to 3 short hospital inpatient stays for a small number. Then it's monthly for remainder of treatment. Drug free remission could be anything from about 3 years to over 8 depending on response to treatment and genetics of your CLL. At 6 years about 20% had started a 2nd treatment.

Neutropenia is common on all treatments ~50%. I have no experience of how that affects frequency of clinic/doctors visits. Usually controlled by dose reduction and will need monitoring by blood tests.

[LarryK in reply to lankisterguy]

Hello, I’ve been on Imbruvica for 9 years. I was curious if you knew why it was “fast fading from the scene”. Is it that the effectiveness is not as good as the newer drugs or just the lesser side effects? Thanks.

[lankisterguy Volunteer in reply to LarryK]

Hi LarryK,

The side effects, especially heart problems like Afib and blood pressure rise are less on the newer drugs.

Not a lot of trials comparing effectiveness, but the few I have heard about have no distinct difference yet, it may take a few years to see if the plots diverge.

Len

[LarryK in reply to lankisterguy]

Thanks Len. For that reason, thus far my doc and I concluded I should stay on Imbruvica. (If it’s not broke don’t fix it.)

[Veggiesaredelish in reply to jimwilmes]

Jim, I just started calquence 2 months ago. Completely free with a program. I have insurance but can't afford the 60% after deductible . Thank goodness for the programs my oncologist automatically set up for me. (And thank goodness for her too!) I take a pill morning and night. That's it, no side effects. I highly recommend it. I had hemolysis twice before starting it and so far none since. Good luck to you on your cll journey. Peru! That's just really cool!

[LarryK]

Everyone responds to chemo differently. I took R+ CHOP and R+ Bendamustine. Caregiving as part of my chemo treatment was limited. I was able to drive myself to the hospital and essentially no side effects. Some people are not that lucky. Chemo was followed by autologous stem cell transplant which is a whole other story. Mega doses of chemo. It took a month to regain enough strength to take care of myself.

PS: BTK blockers was not an option for me as they were developed after I took chemo. They are known to have side effects also.

[BigDee]

Hello jimwilmes

I had Bendamustine & Rituximab for my first treatment as FCR is normally not been given to those over 65 years old. FCR is harsher than B+R, however in much younger, fit patients are still using FCR in small number of cases. B&R and FCR are intravenous applications which in US requires somebody to transport you to/from and time limited. The BTKi drugs are pill form which you can take on daily schedule at your residence for lifetime. Venetoclax & Obinutuzumab are very common treatment today in US. Venetoclax is pill form for one to two years and Obinutuzumab is 6 weeks infusions, so mixed bag. Your FISH and IGVH test results will also guide which drugs you can take. Having said that, which drugs you take will determine amount of care you will require. Hope this helps, blessings.

[Curious79]

Hi Jimwilmes, 8 years ago, at age 72, i had a combo of drugs as initial treatment when diagnosed at stage 4 CLL. For one month every few days I took a pill at home (in addition to the newer drug infusions) which was the only old chemo part. The targeted drugs included obinituzemab.Experienced no pain symptoms. The chemo drug resulted in one noticeable symptom -- over a few weeks my hair turned white (some people thought i dyed it blond) and some nice curl which now sadly is gone. CLL symptoms were gone in 2 weeks. You will get better drugs now in US and Canada. In Canada the blood supplies are fine (i never needed any). I was very nervous too at first, but it was needless worry. New targeted therapies that have replaced old chemo are great improvement. Let us know your decision. Best of luck.

[bagelstreet225]

In various regions, chemotherapy or chemoimmunotherapy (FCR) is the preferred treatment. However, in Europe, Japan, South Korea, Australia, Canada and the United States (for frontline settings), targeted therapy with BTK inhibitors such as Ibrutinib, Acalabrutinib, or Zanubrutinib is favored. For second-line treatments, BCL2 inhibitors like venetoclax combined with Gazyva (a monoclonal antibody) are used. Dr. Rodgers, a hematologist/oncologist and CLL expert from Ohio State University, emphasizes that BTK inhibitors are highly effective for prolonged periods and importantly, they are NOT chemotherapy. Additionally, Carl June, the pioneer of CAR T-cell therapy at the University of Pennsylvania, asserts that not all tumors should be treated with chemotherapy.