Third year on W&W. Recent CT scan shows a substantial growth in the size of lymp glands on the abdominal area. Although my counts are still in an acceptable range for someone with CLL, the doctors are more concerned with the abdominal area. I am not in any discomfort. My appetitie is goog. I have not lost any weight in the past 5 months or so. No bad night sweats. Slight fatigue.
So---- when is the time right to begin treatment ? I guess I'm on the cusp, accortdint to the Drs.
I'd like to delay, but at point is it time to be pro-active ????
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Soflajoe
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The size and location of lymph nodes in the abdominal area are part of the criteria for CLL staging, so they are not to be taken lightly. You don't want them pressing on vital organs or interfering with nerves, blood flow, etc. By delaying, you'll be increasing the tumour burden that will be dissolved away by eventual treatment and that puts a load on your body, dealing with the lysing cells. Be guided by your doctors and start looking into what treatment options are available to you, including clinical trials. While you don't want to leave treatment too late, given you mention that your counts are acceptable, that at least won't be a major concern regarding the likely drop during treatment.
If you delay (perhaps for the purpose of gaining access to a less toxic treatment), you'll be living with the uncertainty of how much larger those abdominal nodes have grown and whether your health may start to deteriorate. It's not an easy decision given all the factors involved of which you've only mentioned a few, but perhaps you should discuss this more with your specialist and whether your reasons for wanting to delay are appropriate? Your specialist knows your full medical background and hopefully has adequate experience in treating CLL, so you should be guided by them, not someone without medical training. I've just mentioned what I'd be concerned about in your situation. I too am approaching the cusp of needing treatment, but my specialist wants to see if we can delay a bit longer so I can hopefully access less toxic treatments.
I read a similar post a year ago that you wrote...I think you need to discuss this with your doctor or perhaps seek a second opinion from a CLL specialist...
Enlarged nodes triggered my treatment, because of proximity to heart and kidney... I felt absolutely fine with no B symptoms... and no external nodes.
Hi. I am also 11q. I just started treatment this week. I too am in a trial (Ibrutinib and Rituxan). It is scary moving forward with treatment. I wish you well. What trial are you in?
I am in the BR +\- Idelalisib. Finished the chemo and going back on the pill next week. They are dose reducing me due to my bout with pneumonia.
I desperately tried to avoid the chemo but being 50 y/o and tx naive in florida, the deck was stacked against me there. I chose to avoid FCR and hope my trial is less toxic.
I only had 1 1/2 years W&W but I learned so much from you, Wayne, Neil, Dr Koffman, etc.
I too wanted to avoid FCR. I hope I have made the correct decision. I am 55 years old and wanted to try something that would preserve options for me in the future. My treatment was triggered by enlarged nodes in my sinus and neck areas. This forum and emails have been very helpful. Thank you.
Your post mirrors my experience. I was on W&W for 10 years and then last September a scan showed a large abdominal mass. This and the fact my spleen was enlarged was the trigger to my starting chemotherapy. I had 3 rounds of bendamustine & rituximab and the mass has disappeared. I am now on rituximab only and feel so much better. It sounds like you are on the cusp but if you have confidence in your doctors it's best to be guided by them.
Even though you have 11 replies already, I will add one more.
In 2012 I had enlarged nodes in my abdomen 9cm x 3 cm was the biggest and two of them were on either side of my bladder, plus my spleen was 2x normal. Fatigue and constant bathroom trips were really affecting my lifestyle. I began the Idelalisib + Rituxan trial and within 6 weeks all was great. I've been on Idelalisib/Zydelig for 27 months but my ALC is now 5.1 so I may be progressing, but my nodes are all normal and no signs of increasing.
If I had to do it over, I would have started any of the Kinase inhibitors earlier- Ibrutinib/Imbruvica would be my choice today for approved drugs and ACP-196 would be the best on a clinical trial.
The thought leaders among CLL experts like my doc- Dr. Furman are leaning towards earlier treatment in cases like yours, when Chemo and MAB therapy is NOT used. They believe that since no DNA damage is known to happen with the Kinase inhibitors, there is no incentive to delay treatment and with a monotherapy treatment of Kinase inhibitor the risk secondary infections is less.
I've gotta say that being a member of this group, and hearing everyone share their fears and experiences sure has helped calm me down over the last year. I now know W&W can change slowly for some and quickly for others. I see so many variations, options, and guidance for them here that are just not discussed in such detail elsewhere for laypeople. To see Jaypax share his
Soflajoe, I sympathise with your anxiety. Depression and anxiety are a major part of chronic illness, often ignored. I'm an anxious person by nature, so I recommend some kind of counseling in addition to the hematology and oncology. I have a psychiatrist with whom I share my fears and doubts. Being the excitable type, I do take meds, and it's made a difference for me. A counselor can provide a consistent sounding board separate from what appears to be a cold Medical Industrial Complex. The counseling relationship is different from family or friends and even this group here.
Soflajoe, I wish you peace and tranquility, wherever you may find it, and strength to wrestle with your decision and the effects of the illness and treatment. Others of us on W&W for CLL are also W&W how your life unfolds. I feel like Bastian in The Neverending Story pulling for Atreyu. Your courage in sharing gives us courage.
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