yesterday I visited an oncologist. He advised that right now your asymptomatic and may wait for chemo, might be month/months/years.. But same time he was of the view that may go for chemo right now.
I am not sure any advantage if go for chemo right now or any disadvantage if wait?? any complications may occur if we wait till any symptom arises?
for reference I am quoting my present status again.
If your doctor feels that you can safely wait, I would ask what reasons he would give for doing chemo now. Usually one waits until there is a reason to treat. With the new non chemo options coming out of trials and some promising treatments in trial, it makes sense to me to wait, if he has no reasons to treat, and give researchers a little more time to work with these treatments.
I thought you mentioned in a recent post your appointment was middle of June?
Did you go for a second opinion or was this brought forward?
Once again you must realise I am not medically qualified so these comments are based upon my experience only.
In general terms there is no data that says treating early improves outcome.
As you say you are in the first stage where w and w is the normal procedure.
You have said previously that you are asymptomatic and feel well.
Whilst your WBC is up its normally about doubling time that is based upon the physical time it takes your wbc to double that drives the need for thinking about treatment. It may be that this is a concern?
If not I would ask what benefit your oncologist sees in treating now against waiting until symptoms appear.
As you know I went for 9 years on my second w and wait this included a year after my consultant said treatment was necessary the delay was because I was symptomatic but feeling well. This gave me a year when I continued with a normal life other than 4 weekly check ups. I went on holiday, played golf 3 times per week enjoyed meals out with friends etc etc during that year without a problem. In the end it was my decision to start treatment because the 4 weekly visits to clinic had become a chore.
What I would advise is that you contact your doctor/s and clarify the situation with the knowledge that early treatment is not the norm. List your questions out before you contact them so you don't forget.
I know you are worried about all this and that this last consultation has confused you.
Take charge of your cll you already know a great deal about this disease and have all the information available from the cll association. You also have the expert patients here on this forum to support you. Let your doctors know you are an equal partner when it comes to deciding when to start treatment so you need clear concise info about what they are thinking.
Yes my next appointment is in June but I just visited for an opinion. Doctor was not having a very solid reason to treat early. In last two months WBC is fluctuating from 113 minimum to 176 max. And latest was 159. I don't think it is showing a rapid upward trend.
I personally think to take an advantage of new upcoming research about first line treatment replacing chemo.
Also, i think i should consult my earlier doctor again and stop more consultation missions
AAli, Pat, Geoff, Len (and I expect many more to come) have given you excellent advice from their combined decades of experience of living with CLL and having treatment. We all find it very hard to come to grips with what looks like doing nothing (watch and wait) after a lifetime of hearing of how important it is to quickly enter treatment with cancer, particularly leukaemias. Unfortunately we (the general community) get a very biased idea of what's the norm for managing cancers. It just isn't news to hear that someone was diagnosed with cancer and were told to go home and pretty well go on living as normal. It IS news when the story is about someone becoming very sick with leukaemia and needing blood transplants and expensive drugs and how they are cured. That scenario can't currently happen for us, because:
1) CLL is chronic , not acute - it's slow growing. We nearly always have the time to consider a range of options when treatment is finally recommended.
2) As Pat and Geoff both say, waiting is nearly always the best option until you absolutely need treatment, because there needs to be a reason to treat, i.e. the treatment will make your life better on balance. ALL CLL treatments have side effects, some life threatening. Some side effects last for years or never go away. If you decide to have treatment, how could you possibly be better off now, considering you have no symptoms (other than a raised WBC)? Even with FCR, which I expect is the gold standard treatment in your country as it is in mine, you have about a 1 in 20 chance of dying from treatment. That's a BIG side effect you can totally avoid by not having treatment.
Have a read of the experiences that some of our members are going through, trying to get through treatment and ask yourself "Do I really want to go through that now and what will I gain?" CLL is still generally not curable. After treatment, you'll hopefully get a lengthy remission, but your CLL will most likely return eventually. When you need treatment the second time, you'll be older and less tolerant of the treatment if you have the same treatment again. That treatment (or even another treatment) is unlikely to give you as good a remission as the first time and you may spend the entire of your remission having more infections because your immunity will been lowered by your treatment, plus you may have permanent nerve damage (peripheral neuropathy) along with other side effects that may take a while to get over if at all.
With CLL, the best specialists are those that treat their patients as late as possible. You can always find a doctor (ideally that doctor should be a haematologist, not an oncologist), who will treat you, if you look around long enough. Most of the time, they are better off from treating you and you will be worse off. Sometimes a haematologist that specialises in CLL may be right in starting treatment when another specialist says no, wait awhile, but that happens rarely.
Don't forget, watch and wait is not a do nothing approach. The watch is very important. That's where the true CLL expert specialist may have told you at diagnosis "I don't expect you'll need treatment for another 10 years if ever", but through regular follow-up checks (watching), may find an unexpected rapid worsening of your CLL and say to you, "Sorry, I thought you wouldn't need treatment for many years to come, but this change has occurred and we now need to start talking about treatment.
Pat and Geoff are both telling you this:
Pat - "If your doctor feels that you can safely wait, I would ask what reasons he would give for doing chemo now."
Geoff - "If not I would ask what benefit your oncologist sees in treating now against waiting until symptoms appear."
I'm sure this community would very much like to hear your doctor's reasoning. If that doctor treats hundreds of CLL patients every year, then perhaps that significant experience has provided the doctor with the skills to identify a good reason to start treating you now, but I'd say that the odds are against that being the case.
Very thoughtful reply and I am so thankful to all of you as after having chat with you people I feel so energetic and full of hopes
I will follow your advise and will ask my doctor to give a solid reason for an early treatment and also will try to find a good hematologist.
I was just reviewing reports and noticed that my bone marrow trephine biopsy revealed that it is nodular. I checked it on net and found it is good prognostic. So a bit motivated right now and once again thanks to all.
I am not a doctor or medical professional, but I am told there are significant studies that prove that early treatment of CLL does NOT improve overall survival. There is data suggesting that Chemo treatments do both temporary and permanent damage to your immune system and may cause chromosome evolution of more dangerous clones. Since many of us die from secondary infections and secondary cancers, early treatment with Chemo could lead to early death for some patients. So why consider early treatment?- there are only disadvantages and no known advantages. If you don't have symptoms why take the risk?
We often strongly recommend that everyone get second opinions from a CLL expert that does know these details and not to trust less CLL experienced oncologists who still feel that early treatment must be better (as it is for nearly all other cancers).
The new kinase inhibitors may yield a different outcome than chemo, but those studies are just starting clinical trials now, and results won't be known for several years.
Len
To make it very simple: 1. treatment only if the quality of life is too much getting away. 2. "every day" the treatment of CLL is getting better, W&W as long as possible.3. chemo has many (sometimes unknown) effects; so: use it only if you must.
I am a patient for 11 years. Ten years W&W with quality of life.Last year I had to have treatment CR, only three times instead of 6/8 and all normal, so I stopped on advice of an expert CLL. Now again W&W with quality of life. How long? Never knows...
I would seek a second opinion from a CLL expert doctor... have you had a recent CTscan?
I was in your situation a few years ago, and a CTscan showed internal nodes enlarged around my heart and right kidney, to the point they would soon cause problems with these organs... so it tipped the balance toward treatment in my case.
A CTscan or perhaps MRI might be prudent. What is your age and country... these can also be factors in the decision...do you have any comorbities?
The decision to treat is obviously different in a 55 year old, compared to a 75 year old.
The link below referes to the current CLL/SLL clinical guidelines.
Lots of good information has been given. Based on experience of living with CLL for
4+ years, the best advice I can pass on is not to panic, give yourself time for the shock to fade a little. Having CLL is not like having other cancers. We have all been where you are and felt the same but have all learned to breathe, calm down and realise there is absolutely no need to rush into making decisions, or to visit different specialists looking for an answer. Take time to familiarise yourself with this site, and read mails from newly diagnosed people who are learning to deal with CLL just as you are.
Many answers and lots of support in this community from folk who understand, most who have had CLL for quite a few years.
I am on chemo for an additional and different cancer that does require immediate treatment, and believe me it is not nice, so if I were you I would sigh with relief that treatment for you is not imminent, and most likely quite some time away.
While we cannot and should not diagnose your CLL there is nothing in what you wrote that signals a need to start therapy. Some general oncologists get nervous when the ALC goes over the 100k line but in the absence of "B" symptoms or certain autoimmune associated conditions there is no reason to start treatment before symptoms appear. The beauty of W&W (wait and watch) in this time of new therapies coming on line is the possibility that a patient might avoid the toxicity of older chemo based therapies if they can safely hold out. You might be a good candidate for this scenario.
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