Frontline treatment

I am a year diagnosed tomorrow and was in for my six monthly check up yesterday. I was hoping to hear "see you again in November". Other than bulky neck nodes, my bloods are normal and I have no B symptoms. I have had a few infections and suffer a little with fatigue but it's manageable. I have no idea as yet as to the genetic make up of my disease. My consultant is concerned about the bulky nodes and is bringing me in next week for a bone marrow and CAT scan. However, he thinks treatment is pending and spoke about FCR and also mentioned the new drugs. But, to be honest, I am devestated to think treatment might be on the cards as I was hoping for months, perhaps years, before that choice arrived at my door. I did mention that when the results are in I'll want a second opinion before treatment. I'm quite upset, fearful of being rushed into treatment. and would like the thoughts of this community as I find the support invaluable.

12 Replies

  • Kate

    It's understandable in the circumstances that you would be upset to hear that treatment may be near. Specially as you say you have no B symptoms other than the swollen nodes.

    Do you have details of your blood tests and how they have changed in the last six months? Do the nodes bother you? Are they very large?

    The bone marrow biopsy and CT scan will be useful in helping you decide how to proceed and the fact you are looking at a second opinion is the right way to go.

    Having just gone through treatment myself FCR I understand your concern although in my case it was my decision to start treatment.

    Your doctor may just be being cautious? Did he/she say why they thought treatment was required? Other than the nodes?

    All I can say to you having been through two lots of treatments now is that getting the disease under control should be the priority it has given me 9 years w and w after first treatment and hopefully even more this time.

    Make sure you get all the facts to ensure you make the right decision.

    Treatment is not the end of the world Kate it should be looked upon as a means to control this disease so that we gain our lives back!

    You are obviously well versed about the disease and are aware that you should be a major part in making decisions alongside your doctors.

    Good luck


  • Thanks Geoff. Your words about treatment not bring the end of the world really help.

    I'll keep hoping for the best outcome re CT scan and bone marrow and fish test and try and take it one step at a time.

  • Kate - your doctor seems to be considering possibilities, including the newer treatments, and, I assume, understands that you won't be making a decision without a second opinion. The information that a BMB and CT scans will give you and your doctor should give both of you a better picture of what your CLL is doing. I assume your BMB will include flow cytometry and a FISH test. You might also ask to have your Ig levels tested the next time you have a blood draw if you are getting frequent infections. You sound like you are an aware patient and that you will not allow yourself to be rushed into treatment. Any discussion about treatment is frightening. I hope you can think about these tests as giving you more information about where things stand. With the results you will be in a better position to decide what comes next. Keep us posted.


  • Will do Pat. The absolute shock of treatment being discussed threw me. With time to absorb, I'm now ready to see what the test results bring and take it from there. I'll post re developments.

  • Hi Kate,

    Snap! I was diagnosed fifteen months ago with SLL after possibly having the disease for two years prior to that. I have just begun negotiations about treatment - you may have seen my discussion about SLL and R-CVP earlier this week. Put plainly, I simply do not want treatment. My children need paying through university and I feel well, BUT I have a massive node protruding from my armpit and loads more hidden in my body and I have to mask this petulance and accept the inevitable. It still irks me though, which is what I deduce from your post.

    Sometimes we just have to be annoyed, stay with it and move on at our own pace. I understand treatments are to be applauded, but no treatment is my preferred treatment.



  • Sorry to hear you are in the same boat but also glad to know someone else is dealing with the same quandary! Let's work hard to stay away from treatment if we can for as long as possible. Keep me posted on how things are going with you. Today I got word that my CT and Bone Marrow FISH TEST etc scheduled for 4th June. I suppose it will be mid /late June before I know the results and their implications re treatment choices. Hang in there and thank you for sharing.

  • Hi Kate,

    I'm due first week in August, so I'll keep you posted. Let me know how you get on.



  • Will do. Stay in touch.

  • Hi KateEvaLen,

    I'm not certain about access to Imbruvica or Zydelig in Ireland, but if bulky nodes are your primary problem, that may be a lower risk than full FCR for you. Suggest you get a 2nd opinion from a CLL expert, and let him/her weigh in on the need to treat and how to treat.

    I'm starting my 3rd treatment and have avoided Chemo so far.

    I was surprised to hear Dr. Keating at CLL Live in Canada, show very positive results for 4 of his Trisomy 12 mutated patients on FCR, but then suggest that avoiding Chemo might be the best option for everyone.


  • You have put your finger on it - everything I've read and learned about our disease screams avoid chemo if at all possible. It is good to know that you have avoided chemo despite being treated 3 times. I'll definitely be seeking a second opinion from a CLL expert. In fairness I do believe my consultant wants the best for me but as you say options may be limited here in Ireland. A clinical trial may be the way to go if treatment is definitely necessary. Thanks for the reply. It helps.

  • I am sorry to hear of your predicament and wish you well, I will pray for you if you are happy for me to do that?

    I have had CLL at least two years but have not had to have treatment so far but the general concessus is that treatment ASAP now so I am pensive about my next blood test.RSVP, lots of love, Swiftbrook.

  • I do hope that your bloods actually support you in staying in watch and wait, which is, I think, what we all want for as long as possible. Do stay in touch. I'm awaiting FISH test results at the moment and dreading hearing that I may need chemo!

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