My Oncologist has recommended that I begin treatment in July with FCR. My numbers are 30 WBC and I have enlarged lymph nodes The change is my spleen is slightly enlarged. My only symptom is my fungus affected toes keep getting infected, and I have to take antibiotics. My preference is a clinical study but as I am 52 and never been treated there are no studies that are open to me.
Is this the right time to recieve treatment wi... - CLL Support
Has your absolute lymphocyte count (ALC) doubled in 6 months? That is one factor. How are you feeling in general, have you had eeight loss, night sweats? What are your other blood counts like platelets, RBC etc. ?What are your markers? Also, FCR is not chemo,it is chemoimmunotherapy...
I recommend you get a second opinion in the next month from a doctor who treats a lot of CLL patients. ~chris
My platelets are around 100. My WBC has been as high as 45 but recently came down to 30, there has been no doubling of the WBC, RBC are normal as well as neutrophils are normal. I have no other symptoms my energy level is fine, I had weight loss last December but it was planned, as I became vegan. I am a little flummoxed as I have been well except for my feet. I still work in the north country and have lots of energy. I was thinking the spleen was the kicker in all this that has changed.
Ok, platelets at 100 is a concern. It is an indiction that treatment is around the corner, but you should get a second opinion. The spleen enlargement , again an indictor for treatment, but it depends on how enlarged it is. There are many factors involved in starting treatment, foot fungus, wouldn't be a parameter, unless it indicates a very compromised immune system, then perhaps it would be a consideration. ~chris
With your presentation I'd be insisting on a second 'specialist CLL' opinion Musicguy because I sense you feel this treatment may be premature.
I know there are charts indicating prompts for treatment but someone once said knowing the right time is more 'an art than a science'.
If you're feeling so well with no doubling time or debilitating symptoms, I'd be wanting a greater level of discussion before consenting to treatment.
Thanks for the info. I am trying to get my head around starting treatment. I feel the same way I did before my foot infection. I am not sure what the rush is? I would like a second opinion, not sure how to go about it? I would like to wait until there are alternatives to chemo immunotherapy, but it may be too late for me. Thanks again.
Have you had your Ig levels checked (a simple blood test)? If they are very low it might help clarify the reason you are having trouble clearing your infection. I see that you are in Canada. Chris would be the person most knowledgeable about the Canadian system. I have to agree with everyone else that a second opinion with someone very familiar with CLL is in order.
I am being seen at the Tom Baker cancer center and my oncologist is a CLL specialist and researcher, I expect she would know better than anyone when treatment is needed. I will check on my ig levels and see what their main issue with me and my CLL . They told me I was carrying a large desease load and that due to my early age and good health would like to treat earlier rather than later to have a good outcome. I was hoping to put it off until Ibrutinib was available since there would be little chance of secondary cancers with Ibrutinib. Apparently my time has come, but I will discuss the starting of treatment with them. I am obviously missing something.
I suspect you are indeed missing something Musicguy. As pkenn says, it would be interesting to see what your immunoglobulin levels are, but if they are low and you are having frequent infections, all else being OK (though there's the concern about your platelets, particularly if they are trending down), a more typical treatment would to have IVIG transfusions to boost your immunity.
Are you aware of any problems with your lymph nodes other than the enlargement? Perhaps some are pressing on internal organs or they've grown rapidly lately? Have you ever had a bone marrow biopsy and have results from that or from prognostic marker testing?
I hope you can get some reassurance as to why you've been recommended to start treatment next month. That would make it easier to accept. If you do proceed with treatment, look upon this as an opportunity to gain a remission to get you through until better treatments are available. Your age and good physical condition should put you in a good position to tolerate the FCR too.
Hoping you get some good answers,
Thanks for your response, I have a bit of enlargement of my spleen, my platelets have been below 100 for close to a year, I still clot very well. My lymph nodes are about 5 cm round but they don't seem to trouble me. Have not had a bone marrow biopsy. And like you say the doctor is recommending treatment to allow me a good remission. I worry about secondary cancers that do not have as good a prognosis as the CLL that I have come to understand. I will let you all know the rationale when I talk to my nurse practitioner.
The decision is based many times on prognosis factors such as :
Fluorescence in Situ Hybridization that can in light some Chromosomal abnormalities
that can has influence on the lymph size
the results can support therapy (information about ZAP70 &CD38)
2.The answers are lying at the velocity of blood test results change
(WBC ,HB,LYMP, PLATALET)
(BETA2 Micro globulin) ; Ig test +Bone Marrow
3.CT can show lymph size changes The size and numbers has influence on decision
Your MD can define your stage RAI based on the aggressiveness of the CLL
by adding tests
Possible therapy are based on aggressiveness
The most common FCR Lite or FCR regular
as far I know the Ibrutinib still at clinical trails
BR (Bendamustine +Rituximab)
Fungal infections can be very difficult to eliminate even for healthy people - particularly on the extremities and hence can take ages to clear. So be prepared to give a new product like Daktarin a decent period of use (like months) before dismissing it as ineffective.
In my first year post diagnosis, I had a persistent fungal infection in my toes, a persistent skin rash and also the warts on my hands (usually barely noticeable), went into overdrive. My neutrophils and Ig levels were 20 - 50% higher than they are now, but I've been rash and fungal infection free now for several years and the warts have shrunk back - all this without any treatment for my SLL/CLL. So don't be too concerned about low immunity readings if your level of infection isn't out of the ordinary.
I suspect a lot of my problem was a bad bout of cytomegalovirus suppressed my immune system and it took a year or so to bounce back.
To clear a toe fungal infection, you really need to work at keeping good air circulation around your feet, i.e. frequent changes of footwear and a preference for sandals or sneakers with good venting rather than enclosed shoes. Probably hard to do in Canada unless your are out of the weather.
Thanks for your information, I have been dealing with the fungal infection for 2years and will be happy when it clears up. I am going out to get some sandals and running shoes to help my toes breathe, and grab some Daktarin. Hopefully with time this will clear up, it is really my only issue the foot infections. Thanks to everyone, your answers have helped give me hope that this is perhaps a just a bump in the road. Many thanks.
Whether it is a bump in the road or time to treat you should be able to get enough answers to your questions to feel like you and your doctor, working together, are on the same page. Have you had a scan to look at internal nodes? it could be that if you have enlarged nodes that are visible or palpable that there are internal nodes also that are of concern. So many questions and so many shades of grey answers with CLL! Very frustrating!