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New drug duvelisib

Lauraisabel
Posts: 72
Joined: Jun 2017

Hi there. Can anyone tell me more about this pill. I am supposed to start citocin and rituxin plus 100 mg of prednisone (for 5 days every month). Got a call from dr to come in and take a look at this new drug. I have no idea how bad or good it is, all I know is that it's not chemo. Thank you all!!!

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Max Former Hodg...
Posts: 3693
Joined: May 2012

This is mostly for various leukemias, and also a 3rd line treatment for F.L.  Main issues seem to be possibility of severe infections, and severe diarrhea.  Respriatory issues similiar to those caused by Rituxan.

 

https://copiktrahcp.com/

 

Lauraisabel
Posts: 72
Joined: Jun 2017

Felt more familiar with rituxin and citoxin. This one seemed to have more mortality rates and super expensive. Have you taken it?

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

Being in phase II trials as recently as 2016, it appears. It is a biologic drug, a so-called "pathway inhibitor", which is the new area of intense development in drug development. Inhibitor class drugs are the natural result of increased understanding of how cancer cells live, reproduce, age and die off. Tech jargon: "...preventing PI3K from playing its role in transducing signals from outside of cells into various intracellular pathways involved in cell cycle regulation, apoptosis, DNA repair, senescence, angiogenesis and cell metabolism, including the PI3K/AKT/mTOR pathway"

The short answer, if there is one, is that it interferes with the communication which cancer cells need to reproduce according to their programming, triggers cell death, apparently restores senescence (cell aging) and, as important, reduces signals sent from the tumor cells to the body ordering the body to feed the tumor by the formation of new blood vessels (angiogenesis). Having had a lymphoma which causes angiogenesis, I note with some interest that Duvelisib is also used against T-Cell Lymphomas.

I have found that the only side effects which matter are those which I personally experience. Even then, only the effects which are detectable and are outside of normal body function are worth noting and many of them do not substantially impair normal life. This would be side effects about which we would say "I notice it now that you mention it, but it doesn't really bother me." Doctor needs to know about the serious effects, as dosage can be adusted or a different inhibitor class drug might be substituted. 

As to long-term effects, there are probalby few recorded with such a new drug. In 2009 I asked my hematologist about the long-term effects of a new drug I was trying in clinical trial. "You'll tell us!" was his response.

Lauraisabel
Posts: 72
Joined: Jun 2017

Hi there, did you take this pill? Also super expensive. I know citoxin and rituxin have side effects, I have had them before and I was ok. This is different and more scary to me. I can't afford this drug so we will see.

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

It came out after my transplant so unless I need a 6th remission, am guessing that I will not receive it. As to cost, have you no insiurance? If not, then have doctor contact the drug maker and ask about their "compassionate use" program in which you would receive it at reduced or perhaps zero cost. Another option is a clinical trial involving the drug in combination with another therapy - that is where the most astounding improvements in treatment are being realized.  You could have a look here: www.clinicaltrials.gov and search by the drug name or by your cancer type.

As to the drug itself: do not worry about the drug. Worry about the cancer.

Lauraisabel
Posts: 72
Joined: Jun 2017

I really like you! You are my go to person. The first time you answered one of my questions was yrs ago and I knew I was going to ask you more. Thank you for your wisdom. I cannot afford this medicine but I did hear the word clinical trial which I will go listen to this Tuesday. What I'm worried about is running out of options and not have a trump card to use. I'm not a candidate for a bmt because my cancer is indolent. I did ask the dr can you have slow growing cancer and fast growing at the same time and she said no. I will listen to what they tell me about this pill. What have you gone thru and what kind of cancer do you have? I read your blog....what an amazing journe... I am not as organized and knowledgeable as you!!! I am now thinking why would I do a clinical trial? Is this because I have no options? Dr never said that. Thank you for sharing your knowledg!!!

Max Former Hodg...
Posts: 3693
Joined: May 2012

Po is huggable and lovable

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

Now my hats don't fit! Honestly, I am fulfiilling what my life's purpose has become. There is great satisfaction in that. We are called to know ourselves and one thing I know is that I connect the dots. I have gone through all of this for both temporal and eternal reasons, and woe to me if I do not live up to expectations!

 

ShadyGuy
Posts: 706
Joined: Jan 2017

but better be careful about violating site rules about giving medical advice. Sounds like you are on a mission from God. Also aren't you kinda in the business and making money and free travel perks from this? Fighting lymphoma since before conception and hoping to continue after death? As I said you are a wonderful source of information but .......

Lauraisabel
Posts: 72
Joined: Jun 2017

Also if I have other options...should I even try a clinical trial?

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

You are very kind. Thank you. Firstly, they are doing transplants for some indolent lymphomas. Secondly, new biological drugs and new combinations (new drugs combined with existing drugs or new combos of existing drugs) are constantly in trial. They would not be so unless they had shown promise technically and clinically. I am currently receiving my 21st anti-cancer drug, even if I'm 'cheating' and applying it topically. Having used up all lymphoma drugs as of 2015, there are now several new ones, if need be. There are always options. A truly excellent hematologist will have plans B, C and D in mind if the treatment you are receiving now is not effective, or no longer effective. 

Trials are especially good in cases of indolent lymphomas, as one of them will be the breakthrough that has been hoped for. You might clarify with doctor as to having both indolent and aggressive cancers simultneously. We certainly can have both. Follicular lymphoma is well known to transform into the aggressive Diffuse Large B-Cell Lymphoma (DLBCL). Here's the deal: a single follicular lymphoma cell transforms into DLBCL and begins cloning itself into a tumor. You still have the original follicular lymphoma and now also the new DLBCL to deal with. Even then, there are options and lots of hope.

I have had one aggressive T-Cell Lymphoma three times, a different aggressive T-Cell type once, and a secondary, treatment related myeloid cancer. All three simultaneously in 2014-2015. Pracically speaking, zero percent chance of being alive. I chose to ignore the percentages.   

Lauraisabel
Posts: 72
Joined: Jun 2017

Wow you are truly inspiring!!! Well I'm going to go in on Tuesday and  question the dr. I was surprised that I got this call to try this new drug! Because I was going to start rituxin, citoxin and prednisone....so I have no idea how long I have to take this pill...they better pay for it..lol..its also for the mzl that I have. If it doesn't work I guess I go back to plan A. I alwpays thought that clinical trials where for people that had little options..I guess I'm wrong. I also hope I ask the right questions... I hope I'm not a pain for you. I will be writing you back! Thank you so much!!!

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

Information is power. If you have not read it, here is a link to the non-Hodgkin's Lymphoma information booklet from the Leukemia and Lymphoma Socierty. Marginal Zone Lymphoma is addresed on page 34.

https://www.lls.org/sites/default/files/file_assets/PS58_NHL_Booklet_2020FINAL_rev.pdf

Another on cancer and finances: https://www.lls.org/sites/default/files/file_assets/PS79%20CAYF%20Booklet_2018.pdf

And clinical trials: https://www.lls.org/treatment/types-of-treatment/clinical-trials

Anyway, there is a wealth of knowledge at their site, as well as at the Lymphoma Research Foundation.Here is their info sheet on MZL:

https://lymphoma.org/wp-content/uploads/2020/09/LRF_Marginal-Zone-Lymphoma_090920.pdf

Tons of resources and information out there. Are you in the US? I forget if I asked - as I do with many things. In any event, I strongly urge you (probably already said this) to consult at a National Cancer Institute designated comprehensive cancer center. Such a center's expertise has saved my life 5 times now. Find the nearest center here:  https://www.cancer.gov/research/infrastructure/cancer-centers/find

Looks like you may have to copy and paste those links into your browser.

 

 

Lauraisabel
Posts: 72
Joined: Jun 2017

Well the only big center near me is Moffit which is highly regarded but I don't think they have specialists in what I have. I live in Safety Harbor Fl. I have a local oncologist that I go to and she's nice...but I wonder if I'm on a stand still. I just wish I could tak yo someone that has taken this pill to ask more about how it went. Also do people go on a clinical trial because they think the regular cocktai won't work? I'm getting all my questions ready. I hope I ask the right ones. I am nervous. Thank you.

po18guy's picture
po18guy
Posts: 1217
Joined: Nov 2011

As to Moffitt: I have met and spoken with one of their research hematologists at a patient seminar in Tampa. That doctor was absolutely brilliant and there are many similar hematologists at Moffitt. Virtually all of the B-Cell Lymphomas are far better known and have defined treatment (and far better outcomes) as compared with the T-Cell Lymphomas I had. Still, if I was anywhere near Tampa, I would have gone there without hesitation. Marginal Zone* is well known, treatment is well settled, and research is producing increasingly effective therapies on a regular basis. Moffitt is a research center and possesses the absolute latest in research data regarding B-Cell Lymphomas.

*I forget: Have the identified the sub-type? Is it a relapse of marginal zone?

Something else to consider: For relapsed or refractory disease, different therapies may be offered. The reasoning in many cases is that the lymphoma has defeated the prior therapies and may not respond to the same treatment repeated. Relapsed or refractory disease may also open the door to the use of "off-label" drugs, i.e. drugs approved for leukemia or other blood conditions - drugs which have shown promise against relapsed lymphomas. IMO it would be an excellent time to consider a clinical trial, as medical advances are made only via clinical trials. This may lead directly back to Moffitt. 

A lot to digest - as the entire diagnosis certainly is.

Again, knowledge is power.

Lauraisabel
Posts: 72
Joined: Jun 2017

Thank you. My onc said that my lymphoma was back. It was the same mzl. I was going to treat it like we did in 2018. All of a sudden I get this call that there is this pill. So I got excited...but was wondering why am I getting this now? Got worried for a moment thinking is this it for me! Trying to get a list of questions and have a huge brain fog. I have gone to Moffitt for a second opinion twice. I see dr Bello. You have helped me so much. I am afraid but excited. I hope I choose the right thing. Also if lymphoma keeps coming back what else should I be doing. How are you doing!!!!

Lauraisabel
Posts: 72
Joined: Jun 2017

So I joined the clinical trial....stil nervous because of all the protocols and I have to have scans done at 12 weeks intervals. What got me was the fact that after I signed then I was told that I need to take antibiotics too! I was not happy. I will be taking that as long as I am on this clinical trial. I don't like taking antibiotics unless super necessar. I felt that I was lied to. I just have to get over this... thank you for listening.

Lauraisabel
Posts: 72
Joined: Jun 2017

It is a clinical trial for sure and it will not go thru my insurance...I wonder how much will I pay...also if i go off it and need to do it again will it still be a clinical trial. Well tomorrow I will know more.

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