CLL with 17p Deletion

I was diagnosed about 18 months ago with CLL, with 47% 17p deletion which makes me high risk L2.  My doctor sees me monthly and we are waiting to start chemo when my red cells and platelets drop or if I advance in the Rai stages.  Does anyone have familiarity with 17p plus presenting positive for favorable IgHv?  I know it is the worst possible mutation in terms of resistence and progression in CLL.  I am going to get a second opinion on treatment plan...I just want to make sure that waiting is the way to go (53,000 WBC.)

On Aug 16, 2012 12:45 AM blbrown wrote:

I was diagnosed about 18 months ago with CLL, with 47% 17p deletion which makes me high risk L2.  My doctor sees me monthly and we are waiting to start chemo when my red cells and platelets drop or if I advance in the Rai stages.  Does anyone have familiarity with 17p plus presenting positive for favorable IgHv?  I know it is the worst possible mutation in terms of resistence and progression in CLL.  I am going to get a second opinion on treatment plan...I just want to make sure that waiting is the way to go (53,000 WBC.)

Waiting is fine. No particular WBC limit demands chemo treatment if RBC and Platelets and some other parameters are not getting into a treatening range. New kinase process limiting drugs in trial are looking good and are not damaging apparently (to be proven more in trials) compared to chemo. You might consider one of these trials or just hang on if possible until available (perhaps 18 mo away...of course no one yet knows or is telling if the do have a very good guess).

I am at 170k WBC. I am taking a kinase limiting drug as an experiment (not a trial) which is off label for CLL...a lab rat of one; My WBC seems to be flattening out and my nodes shrinking. If you want more on what I am doing, I am willing to share this in more private forum...I would respond to such a request here with a FB name where you can contact me.

TSvi

On Nov 23, 2012 4:36 AM Jjohn wrote:

Clinical trials with kinase inhibitors/bcr inhibitors are beginning to show some success with 17p deletion. I would recommend reserching for these. This is the first tretment that i have read about that is having such promising results for 17p, so your timing may be good. Best of luck!

There will be a report in Dec on the trials with  btk inhibitors, including for CLL. I expect the report to be positive because the company that owns the rights to the product is delaying any reports to (investment) analysts until after the presentation at the medical conference.

At least one blog from a doc with CLL that has bad pronostics is reporting very good results for himself in one of these trials. Of course the reason there are trials is that the results on large numbers of patients is meaningful, where results on one person may not be...unless you are that person.

As mentioned in my earlier post, I am getting quite decent results with an kinase inhibitor that is only available "off label" for CLL. I am not part of a large trial, even though a few others have tried this kinase inhibitor for CLL. And in total, given a number of other things I am taking, I am a trial of one. This makes me possibly interesting, but not statistically significant and irrelevant to most practionioners. But compared to my other treatment options now available, what I am doing seems low risk...why I am willing to be a lab rat. So far, I believe I am winning by taking this protocol...but I may be happy to switch to one of the kinase inhibitors now on trial when (if) they become approved for CLL and they prove to have the low risk of adverse affects that was indicated early. Trials provide the kind of statistics that allow such risk assessment. I fortunately do not have the worst indicators for CLL such as 17p depletion and could benefit from at least some parts of the standard protocol for CLL...but I am trying to "kick the can down the road" until more targeted, less overall damaging treatments (such as kinase inhibitors now seem to be) are available as standard treatment.

Sounds like you are taking a logical approach, especially since i do not believe, from what i read, that kinase inhibitors do any serious damage to immune system. This can possibly translate to longer remissions vs. chemo-induced remissions since there is little or no damage  to the residual defense system from kinase inhibitors. I don't want to sound unrealistic, but I really believe we are in a CLL Turning Point era for many patients with prolonged survivals that were never possible before. ESPECIALLY since Kinase inhibitors seem to be having some success with clearing out proliferation centers like lymph nodes. These have been particularly nasty havens for those CLL cells to hide out in.

On Nov 23, 2012 10:36 PM Jjohn wrote:

Sounds like you are taking a logical approach, especially since i do not believe, from what i read, that kinase inhibitors do any serious damage to immune system. This can possibly translate to longer remissions vs. chemo-induced remissions since there is little or no damage  to the residual defense system from kinase inhibitors. I don't want to sound unrealistic, but I really believe we are in a CLL Turning Point era for many patients with prolonged survivals that were never possible before. ESPECIALLY since Kinase inhibitors seem to be having some success with clearing out proliferation centers like lymph nodes. These have been particularly nasty havens for those CLL cells to hide out in.

Similar to the Kinase inhibitors that are on trial, my lymph nodes are down by over 90%...over a fairly long period.

WBC  also kicked up--a pattern seen also with the other Kinase inhibitors--but my WBC now has become more or less flat. And an expanded spleen is now near normal size.

But, by design really, my (mTOR) kinase inhibitor does attack my good B cells as well as my CLL mutated B cells. Nevertheless, with some herbal assists (the other part of my protocol) my immune system overall is proving to be more effective than it appears on paper and I am not seeming any more vulnerable to infections than the people around me.

So, the new kinase inhibitors (especially ibrutnib) could be a bit safer for me and have better efficacy...but since I am managing fairly well now, I will look twice before jumping to the "devil I do not yet know".

It does seem that we may be finally moving toward CLL really being a "chronic" disease--as its name implies--instead of one that is usually fatal but just slower at it than many other cancers. Perhaps it had been labelled chronic because most people get as senior citizens and if they last a decade, their lifespam seems to be a fairly normal length. I am more ambitious than that, especially now that I more than a bit past the medium lifespan for my flavor of CLL and have yet to take any treatments that seem to have caused me any long term damage. (This lab rat did not take the standard FCR when it was recommend to me. Some pioneers get arrows in the back and some make it to Oregon. (I live in Portland))

Thank you all for your helpful responses.  I asked my doctor about kinase inhibitors in lieu of FCR chemo.  He said it is likely I will start with FCR following by a stem cell transplant.  There may be time in the future to try the kinase inhibitors but he's not sure about the timing with this.  Everyone I've talked to (4 different Oncologists) tell me that for now, FCR is the gold standard for first line treatment for people who have 17p CLL.

On a related topic, I'm getting conflicting guidance from these same doctors, some saying I should plan for a bone marrow SCT and others saying I should plan for Allogenic Peripheral Blood SCT immediately following chemo.  Anyone have any thoughts on this?  From what I read, the risks are about the same, but Peripheral blood is less taxing on the donor.

Thanks again for responding.