What else can be done?

Ok I just survived a bout of pneumonia again.my hospital doctor asked my hematologist what could be done for me he said nothing that I was at end of my disease process. In other words nothing left be done. Doc asked me how I feel about this? How would you feel if your hematologist tells you basically you're going to die? Ok, so what he is saying is my bone marrow infiltrate is too great? Is that why my only hope is BMT? Since I can't seem to do treatment this is only option? Also if I decide have BMT how can I survive the extensive chemotherapy given if I can't handle targeted therapy? Doc, said I cannot handle chemotherapy because is too toxic? Will organs suffer under this extreme chemotherapy? Will it destroy stomach lining,thyroid or other organs? Ok just wondered about

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  • Hi Greygirl and sending you a massive hug of support because you're in a tough place and you must be deeply concerned about this situation. Forgive me because I don't fully know your treatment history or co-morbidities but I suppose venetoclax has been discussed and discounted? Would you be willing to undertake a BMT?

    Would a second opinion help? I don't know if you're under the care of a specialist in CLL so I'm stabbing in the dark here but you'll want to explore every possibility I'm sure so you need the very best cutting edge advice.

    I hope this hasn't robbed you of the strength to keep fighting this but after another bout of pneumonia, your must feel physically depleted anyway. Do you have good support and encouragement around you?

    Others more aware of advanced treatments will hopefully be along but I wanted to send you my support and caring thoughts.

    Warm best wishes,

    Newdawn

  • Yes, I have my husband and cat and friends and family.No he is not a specialist from md anderson! I am emotionally done with chemotherapy. I know each drug seems to be stronger and stronger. The experience each time has been negative.

  • I would hope you are dealing with a specialist at this point. If BMT is basically your only option then I guess you have to weigh the risks. What are the chances of making it through BMT and having a decent result vs whatever quality of life you can have without it. I wish you well with your decision. You may want to look into trials in your area. You may have a shot at a CAR-T trial. Have you looked into Venetoclax?

  • Venoclax? Can I expect anything different? Unless it involves low dose I'll be back at zero again. Doesn't the dose go up to 400 mg?

  • I know a few patients on Venetoclax.. 4 and 5 line and they have done well...

    Might think about idelalisib and rituxan, it has been very effective for me to a point and side effect free for the most part. There are lung concerns and PCP infections, but prophylactics seem to be working well, in the few people I know on it...

    Might look into CAR T, in a trial, but it has fludarabine preconditioning... not sure what they add in CLL ...varies by trial I think...

    ~chris

  • Chris,

    She had Fcr, Ibrutinib twice and idela and rituxin.

    Jeff

  • Zydelig is what put me in hospital! CAR T if in trial might work but I don't know if I want all those CT Scans!

  • Oh yes..sorry I forgot...

  • Fludarabine as a reconditioning? Sounds scary!

  • I am on Ibrutinib, and just started full dose Venetoclax. I did not have any noticeable side effects adding the Ventetoclax. I am waiting for WBC/Platelets to stabilize. Yes, you may fail Venetoclax, or you may do awesome on it. You won't know till you try it.

  • What is your deletion?

  • I have no deletions noted at this point. My personal choice was due to my unmutated IGHV status. It was FCR vs Imbrutinib first line. My thread is here: healthunlocked.com/cllsuppo... You can see my concerns in the thread. The first line therapy group was only 31 patients, but at almost 6 years 91% were progression free. I was going to choose Imbruvica, but a Imbruvica/Venetoclax trial opened up with my specialist. The general consensus is to hit CLL with the biggest hammer first, and I think V-I is it. I am trying to hold off on any chemo till later if I need a stem cell or Car-T.

  • Dear Greygirl-

    We are all in this together and your latest news is a real kick in the gut. First thing that comes to mind is 2nd or 3rd opinions and new research trials, if you have not already gone down this path.

    No doubt we are all sending love and concern as you regroup and move forward on this often difficult journey.

    Love prayers and healing.

    Bill

  • Love and hugs grey girl, get at least a second opinion

  • Go see a specialist. Per your previous "Am I Crazy" post, you are not.

    Jeff

  • Specialist? What can he offer me but what is available?

  • You don't know what you don't know and what you don't know can kill you. That's what we say in the fire 🔥 dept. just Go, please.

    Jeff

  • No words of wisdom for you grey gitl but just sending you a virtual hug, you are going through such a lot,

    Peggy

  • Certainly not an easy time for you. Wish I had a cure for you. Warm thoughts and hoping you will find a solution no one can seem to offer at the moment. wIll say some prayers for you.

  • My wife's hematologist considers IVIG infusions IF his patient has frequent bacterial infections AND has low IgG. Suggest you talk with your hematologist about this.

  • Greygirl, There isn't anything I can post about possibilities for you but if you aren't seeing a CLL specialist, I would definitely suggest that. And if you've done that, then I would ask for a second opinion. I want to send you prayers and support. This must be a very difficult time for you.

  • Dear grey girl, I am holding you in my heart, as this must be such a difficult time for you right now, very discouraging to say the least. I join the chorus of people encouraging you at least to have a conversation with a CLL specialist, who may have more creative ideas than some of us can muster. I cringe at the words "nothing more we can do." I send prayers.

  • Hi Grey Girl

    I think you should punch your hematologist in the nose to show you're not over yet and visit a CLL specialist researcher for a second opinion. There are options available and the well-known CLL experts are aware of things coming up that your general specialists don't. That was certainly the case with me (I got a referral to Dr Con Tam as I'm in Australia)

    I'm on Ibrutinib + Venetoclax and haven't had any side effects other than a slight stomach ache one day. Venetoclax slaughters CLL cells and is well tolerated. I have a friend on BGB-3111 who is doing great also.

    I'm sure someone here will be able to recommend someone worth visiting who would be accessible to you. My doctor is 800km away and the travel is well worth it to me.

    Graham

  • Hey friend! You said you are going to MD Anderson, but not a CLL specialist there-I'm confused. I went to MD A. In Houston and I have a CLL specialist. I would defiantly see a specialist in CLL and then you won't second guess yourself. Have faith and Hope and we here are all pulling and praying for you! HUGS💕

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