Treatment in California

I am in Northern California (an hour south of Sacramento) and based on my blood work & cat scan (lymp nodes; count doubling, extreme fatigue etc.) my oncologist said I am still watch and wait but treatment probably not "too far in the future". HOWEVER, right now it appears all UC Davis has to offer is standard Chemo. I have looked into a lot of trials etc. and it seems most of them you have to fail chemo first before you qualify.

Is this true? I am youngish 40, have other medical issues and can't really afford to travel too far if at all possible. My insurance no longer will pay for Stanford (but UC my Davis Oncologist worked for Coutre so he does talk to him)

I don't know what "too far in the future" means of course but I want to be prepared...

Thank you.

6 Replies

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  • It is true that many CLL Clinical trials are for high risk patients or relasped/refractory. However, the are clinical trials for untreated. Many currently are adding something like Imbruvica (ibrutinib) or idealisib to chemo, often bendamustine/rituxan BR.... but there might be a few non-chemo options...

    Here is the clinical trial database which you can search....

    clinicaltrials.gov/ct2/resu...

    You might discuss 'off label' access to some of the new treatments, with your doctor, since your other health issues might preclude chemoimmunotherapy...

    Contact the Leukemia and Lymphoma Society, LLS in your local, because they offer

    some funding to offset the cost of co-pays...

    ~chris

  • I am in San Francisco and currently on Imbruvica on the first line of treatment. I refused FCR and BR but my insurance agreed to cover the costs which surprised the oncologist at UCSF (University of California in san Francisco). Before, I can help you, I need to know more about your insurance. Then, I can call the office of my oncologist in San Francisco and ask them if they accept your insurance. He is not CLL specialist like Coutre in Stanford but to be honest I wasn't impressed with my consult with Dr. Coutre in Stanford. UCSF offers a state of the art Hematology department (Just built). I can give you the information of the physician in charge of the whole department but his fellow (physician assistant) was extremely knowledgable and up to date about the new treatments for CLL patients. I was very impressed by his responses to my questions.

    Well, good luck and let me know if you need any more help. I would be more than happy to put you in contact with all my contacts in Bay Area.

  • There is a lot of talk on this site about clinical trials because for some of us the first line treatment was not effective. First line treatments can and are effective in many cases. If you have a p17deletion CLL is more difficult to treat because it is resistant to some of the approved protocols. I would talk to your oncologist about if you have this missing chromosome and go from there. This can be done through a blood test.

    You are still at the watch and wait stage. Do some more investigation about your own particular case ie p17deletion, and look at what the first line protocols are and can offer. There is success here with many people going into remission for years.

    I had several first line treatments before it was discovered that I had a p17deletion. Obviously none worked for me and I am now in a clinical trial. You need to realize the clinical trails are drug testing and data from outcomes are from those taking the drugs. We have no other choice but the trials. And not all participants in the trials get the trial drug.

    My suggestion to you is not to build any bridges until you actually need to cross them. Stay calm, do your research, and most of all enjoy the life you have.

  • I have 11q deletion...I have all my blood work/chromosomes etc. already. They did that when I first was diagnosed. I have already discussed treatment options with this oncologist, that's my concern. I had previously gone to UCSD & Stanford but UCSD was too far & Stanford stopped taking my Insurance (I just don't do well with travel, I know it sounds bad but I just do much better in my own home with my own bed, my own tv & my cats :)).

    I have Blue Cross CVT through a school district.

    Thank you so much for all 3 of your replies, I have looked at the website and emailed about some of the trials and will keep checking in here and asking questions :) Any other advice is GREATLY appreciated. I just am spooked because he said "probably soon"; then when I had the CT Scan they found other issues "not-related" to the CLL (it seems nothing is related to the CLL but other people on this site have the same issues so I'm curious...) My next blood test is early Jan. so I'll be curious....

    Thank you so much!

  • May I ask who are you seeing at UCD? I too am in Northern Cal and going to UCD. It's been 6 months since your post, what path have you taken? I am Trisomy 12, unmutated IgVH, no Notch and am exploring non chemo treatment options.

  • I see Dr. Jonas who is the only CLL Dr. there I know of. Right now I am still watch and wait. I get monthly blood work and see him every 3 months. My WBC & Absolute Lymphocyte Count continue to climb very high (my ALC has almost doubled in 6 months but not quite). I have had a couple scares but every time he thinks it's time to start me on treatment (not that I am sure that's the right answer right now) my WBC goes down. I am a very unique case he says. But that's the story of my life....I'm not sure what Notch is...

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