New compendium of quality CLL resources for patients + your hematologist

[GlennSabin]

I am sharing a collection of high quality CLL resources for both patients and hematologists.

First, the patient resources which include:

patient checklist

doctor visit checklist

building your CLL team

financial support

tracking lab reports.

These important resources are from leading organizations including CLL Society, Leukemia & Lymphoma Association, and Patient Power. You can access the information here: aftermd.com/cll

CLL Continuing Education for Your Hematologist

Is your hematologist in private practice, part of a small group, or perhaps hospital-based? If your physician is not a CLL expert (clinician-researcher) at a major academic cancer center (certified as a National Cancer Institute designated comprehensive cancer center), I encourage you to share an important continuing medical education (CME) opportunity specific to improving care for CLL patients.

CLL experts Drs. Matthew Davids (Harvard/Dana-Farber Cancer Institute) and Anthony Mato (Memorial Sloan Kettering Cancer Center) are featured faculty leading this online educational series for hematologists to learn the latest on managing and treating CLL patients.

Your hematologist can learn the most current information and earn CME credits (a requirement for all physicians) in critical areas of CLL care, including:

diagnostics and prognostic implications

measuring fitness of patients

treatment algorithms

drug pipeline and latest science

practical strategies to prevent and manage adverse (treatment) events

Learn more about this CME opportunity for your hematologist here: primeinc.org/cll?s=eh&data=...

I hope you find value in the resources I’ve shared, and encourage you to forward this email to your hematologist to let them know about the important CME opportunity described above to support their knowledge base in the fast-paced and evolving area of CLL treatment and management.

[Newdawn Administrator]

Are the patient resource links missing Glenn?

The CME training opportunities are presumably limited to the USA?

Newdawn

[GlennSabin in reply to Newdawn]

Thank you for the catch. I've inserted link to the post.

CME opportunity should be available globally. Not positive, but do not see why it would be limited to U.S. physicians.

[AussieNeil Partner Administrator in reply to GlennSabin]

Thanks, I was wondering where the patient resources were .

With regard to the Continuing Medical Education (CME) links, US based ones will naturally be written for what's available in the USA and sadly, there's a massive difference with regards to CLL treatment options in the USA compared to the rest of the world. The major divider is access to non-chemo treatments. While access to these for first line treatment in the USA is fast becoming the norm, only a few other countries offer these non-chemo treatments to patients - and only if they have 17p/TP53 del CLL. First treatment is generally chemoimmunotherapy (typically FCR) and that's given irrespective of IGHV mutation status. Most countries don't even provide an option of treatment with the newer non-chemo alternatives for 17p/TP53 del CLL patients unless the patient is fortunate enough to have access to a clinical trial. Again, access to clinical trials is far greater in the USA than elsewhere.

The non-chemo treatment options do give us non-USA residents something to aspire to achieving in our respective countries, with some members already having been involved in some successful additions of exciting newer treatment options. We often just have to keep patiently advocating for them and hope that our universal health care systems are able to successfully negotiate an acceptable treatment cost with the relevant pharmaceutical companies.

Neil

[GlennSabin in reply to AussieNeil]

What would it take to get the targeted therapies as first-line treatment outside of the U.S.? Presumably these agents cost less than in the U.S. Do patients/consumers in Canada - working with their hematologists - have an opportunity to challenge the standard-of-care through an appeal process, where the science irrefutably supports their use?

[AussieNeil Partner Administrator in reply to GlennSabin]

The problem is basically that new treatment protocols need to show greater effectiveness (a significant improvement in complete or partial responses with at least as long a remission), with the same or better adverse events risk profile compared to currently approved treatments. Having hopefully shown this via a phase III clinical trial, the very difficult challenge is getting the treatment cost down to on par with something like FCR, where you are trying to beat a cost of roughly $50,000 for 6 months treatment and done. SIngle agent targeted therapies start negotiating down from around $160,000 per year indefinitely. That's a HUGE difference to overcome, which is why first line treatments outside of the USA are pretty well only being approved for where chemoimmunotherapy just won't work (17p/TP53 del).

Chris Cllcanada can better respond about the situation in Canada, where there's the additional challenge of funding being province based after national approval.

In Australia, the approving authority is extremely reluctant to approve any treatment costing more than around US $40,000 per year. Commonly a major sticking point is that pharmaceutical companies tend to pick easy to beat treatments for the comparison arm in a clinical trial, such as chlorambucil! Understandably, what approving authorities want to see is a comparison against currently approved treatments, usually FCR. That's why it's such a slow process elsewhere. You can't readily compare the results from different trials. Pharmaceutical companies are very reluctant to do another clinical trial for a smaller market where profit margins are negotiated down. Initial applications get rejected and hopefully there's one or more resubmissions, where additional data hopefully eventually supports an approval, aided by much 'pencil sharpening'. After all, as I see it, once the R&D and trial costs are sunk, the production cost is low. Pharmaceutical companies can gain nearly the same profit from supplying twice as many patients at half list price.

In Australia, supporting submissions are made by the blood cancer charities Leukaemia Foundation and Lymphoma Australia. Submissions are also welcomed from patients with CLL, particularly those who have had treatment with the drug being considered for approval. That's where this community can help, by encouraging those from other countries who have been treated with the newer drugs to submit their treatment experiences.

Neil

[GlennSabin in reply to AussieNeil]

Appreciate the thorough response. Lots of work to be done here. Indeed, the pure production cost of agents (drugs) are a mere fraction of what they sell for - so plenty of room for negotiating ... and still a huge margin remains, especially once R+D cost is recouped.

[PlanetaryKim]

Thanks for this, Glenn!

kim

[Jemorgen]

Brilliant resource! Thanks so much!

[Jm954 Administrator]

Glenn, is it ok to share these resources?

Many of them say that they are copyright - “ © 2017 PRIME Education, Inc. All Rights Reserved.”

Jackie

[GlennSabin]

Absolutely - these resources are created to share widely.

[Manchew]

I was diagnosed with non Hodgkin lymphoma little over 4 years. I get no information relating to my illness other to expect my white cells to continue elevating. I have been having very painful swollen lymph nodes in my lower stomach area, and hurt severe while walking, was better when resting. I went to ER and they examined by CT scan taken some weeks ago and said the pain was from my badly swollen lymph nodes. My primary doctor said some lymph nodes may need to be removed, and he was sending his findings to my oncologist. Appointment very soon with her. My pain and swelling has since went down. Has anyone with non Hodgkin lymphoma experience this before??? I like watch and wait, but would like more concern with my oncologist.

[MsLockYourPosts Passed Volunteer in reply to Manchew]

Manchew - Welcome. You might want to post your question separately with a title about swollen lymph nodes to get the attention of others with a similar issue. Giving an idea of your general location would help people to advise you. If you want your information, and that of anyone who replies, to not end up on social media, at the bottom of your post change the setting from everyone to community only. Many here only reply to locked posts.

Is your diagnosis specifically CLL, which is a non-Hodgkin lymphoma? If it isn’t, but is something like Follicular Lymphoma, approaches for monitoring and treatment would be different. Removing a lymphnode to biopsy would not be uncommon, but trying to remove several, as opposed to treating the lymphoma, would be very unusual.

Showdog has a tecent thread about nodes and when to treat that you might find useful.

[Big_Dee]

Hello GlennSabin

How can I save this post for later viewing?

[AussieNeil Partner Administrator in reply to Big_Dee]

There are a number of ways you can save a post for later viewing:

1) Bookmark it

2) Open it in a new browser tab

3) Share it to your email via the email envelope icon (found at the end of the line below the post starting with "More".) This technique only works with unlocked posts.

3) Copy and Paste it into a document. (For this tip you'll need a text editor app installed on your smartphone or tablet

There are plenty of free apps available.)

Neil