Diagnosed with CLL 2014, chemotherapy 2017 Oncologist prescribes chemo pills, 5 days per month,3 times daily INDEFINITELY. Any Alternatives?

[LaurenSheryl]

I'm new here and live in Ecuador, I desire to go in remission but limited resources here. Need to know what else I can do?

[lankisterguy Volunteer]

Hi LaurenSheryl,

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I wish I could provide a better answer, but since we are NOT medical doctors and cannot give medical advice, it is difficult for us to dispute your doctor's treatment plan.

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Is there anyway you can ask to be seen by a hematologist that has more experience with CLL, and is familiar with the modern targeted treatments?

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The most common Chemo treatment from many years ago was Chlorambucil / aka Leukeran see: en.wikipedia.org/wiki/Chlor...

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Here is a link to a more detailed explanation along with the doseage regimen

pdr.net/drug-summary/Leuker....

For the treatment of chronic lymphocytic leukemia (CLL).

For the palliative treatment of CLL.

Oral dosage

Adults

0.1 to 0.2 mg/kg orally once daily (average of 4 to 10 mg/day) for 3 to 6 weeks is the usual initial dosage or the dosage for short courses of treatment. Most patients require 0.1 mg/kg daily. Adjust the chlorambucil dosage based on patient response; reduce the dosage when there is an abrupt fall in white blood cell count. The dosage should not exceed 0.1 mg/kg daily (average of about 6 mg/day) in patients with hypoplastic bone marrow or if lymphocytic infiltration of the bone marrow is present. Alternate chlorambucil dosage schedules include intermittent (starting at a single dose of 0.4 mg/kg), biweekly, or once monthly pulse dosing. Doses are usually increased by 0.1 mg/kg until lymphocytosis is controlled or toxicity is observed; subsequent doses are adjusted to result in mild hematologic toxicity. Biweekly or once monthly chlorambucil administration appears to be at least similar in efficacy but with less than or equal hematologic toxicity compared with daily chlorambucil. Maintenance therapy (if needed) should not exceed 0.1 mg/kg daily and may be as low as 0.03 mg/kg daily. Most patients require a dosage of 2 to 4 mg/day or less. Consider discontinuing therapy after maximal control has been achieved; intermittent therapy reinstituted at time of relapse may be as effective as continuous treatment.

For the first-line treatment of CLL, in combination with prednisone†.

Oral dosage

Adults

30 mg/m2 PO on day 1 in combination with prednisone 80 mg PO once daily on days 1 to 5 repeated every 2 weeks for up to 18 months and maximum response was evaluated in a randomized study. Alternatively, chlorambucil 12 mg/m2 PO daily for 7 days plus prednisone 30 mg/m2 PO daily for 7 days repeated every 28 days for up to 6 courses was used in another randomized study.

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Len

[Jonquiljo]

We can't give medical advice, but we can open the discussion a bit so that you can get an idea of what is the current treatment in the countries we all live in.

This may give you an idea of how adequate the treatment you are getting may be. It will also tell you what can be done - as perhaps it is possible to get these treatments in your country.

Mods: That is not giving medical advice but will give the OP an idea of how CLL is often treated. We talk about ourselves and the original poster can get a good idea what they need to do on their own. @LaurenSheryl - would that help?

To do this, LaurenSheryl - it would be best if a moderator locked your post and thread here so that what anyone says is private to the community.

Anyone want to join in here?

[LaurenSheryl in reply to Jonquiljo]

Any suggestions are welcome. Thank you

[AussieNeil Partner Administrator in reply to LaurenSheryl]

Hi LaurenSheryl,

You can make your post private/locked by editing your post via the 'More v' option under your post. Change the option under "Who can see my post?" from "Anyone" to "Only community members". A padlock symbol then appears to the right under your post title to show that it is locked. This post explains the pros and cons of locking posts: healthunlocked.com/cllsuppo...

With respect to your treatment choice, it would help if you can share what chemotherapy you had in 2017 and the recommended new chemo pills.

Fludarabine, Cyclophosphamide and Rituximab (FCR) and possibly Bendamustine Rituximab (BR) may be available to you. FCR has been in use for nearly 20 years. Both treatments last 6 months and both require hospital visits for infusions. BR is gentler than FCR and recommended for those over 65. Both are termed chemoimmunotherapy treatments.

If you were treated with either of these in 2017, you are unlikely to get another 3 year remission from having that treatment again. That's probably why your oncologist has suggested the pills.

Neil

[mantana]

Chemotherapy is not used much nowadays anymore for majority of patients in countries with good healthcare systems.

Did you research what treatment options are available in Ecuador?

Is any of these three available (either partially refunded, or fully refunded)?

- Ibrutinib

- Acalabrutinib

- Venetoclax

They show quite good results in CLL treatment. Further, recent, ongoing studies of combination of either ibrutinib or acalabrutinib with venetoclax show complete remission in a large number of patients.

If none of these are available in Ecuador, I'd seriously research your immigration possibilities to Spain, where these treatment options are easier to obtain. It might be plenty of paperwork, but it seems like a possibility due to Ecuador-Spain relations. It's your life, fight for it - you don't get a second one!