Hi
Is any one here who is surviving with CLL initial phase or in wait n watch phase? I just want to know is there any definite pattern that this phase prolongs for how many years? or it varies with patient to patient and one may live for rest of his life in same phase?
Regards
Im in W&W but that ends in 3 weeks. W&W phase can vary dependent on your genetic markers and doubling times. Some W&W periods can be 20 years or in my case 2.5.
AAli, nearly all of us are in watch and wait, either waiting until our first treatment is required, which for around 20 - 30% may be never and those that have had treatment that re-enter watch and wait. Only those currently undergoing treatment are not in watch and wait. That's the nature of a currently incurable cancer. Perhaps some of the treated group may also never need further treatment. We now know that patients with the right genetics and treated with FCR could well be cured, with some patients clocking up over 10 years since treatment in watch and wait mark II. It is early days too for the new non-chemo drugs and we still don't know what the future holds for patients that have been treated with them. There's an expectation that a combination (possibly several combinations) of the drugs currently available for treating will surpass the success of FCR.
Neil
I have been in W&W status for 10 years with my white cell count 56,000. So far so good 😊
what is your age? Do you take any measures to slow the progression of CLL?
I am in india , male 67 yrs dx cll stage0 ;20months ago. Costs of oral medicines like ibitrunib etc. is prohibitive and FCR is risky. So for me ideal situation is to have long W&W and die with CLL.
68 years old. Doing nothing more than staying in good shape walking my 2 dogs 3 miles per day.
Thanks.. You are my role model now.
Except for good exercise , you are not on any specific ( only raw food etc etc) diet or any other compulsion for over a decade!!!!
I am keeping a healthy life style, yoga meditation and attending spiritual class most of the days. However, I still feel fatigued all day. I pray to God for very long W&W with normal health wherein I feel energetic and fresh...
regards
vinnet
Relax as hard ad that may be. Have a juicy steak and relax. There is very little you can do to change the course of the future. Have a glass of wine and relax. Watch a sunset and love the one your with!
Questions: Send me a Private Message: support.healthunlocked.com/...
(Email address removed to protect privacy - Admin)
I've edited out your email address for your privacy. This is an open post and email addresses can be harvested by robots for email spamming, unfortunately. - Neil
Thanks 🎉🎉
Neil
Is it possible to get an idea of cost of non chemo treatment ? ibrutinib or similar oral pills based?
Any data on likely drop in price in future? say 3 to 5 years?
best
vinnet
Unsubsidised costs are about US$150,000 per year for non-chemo treatments. I very much doubt that they will drop in your timeframe, but we can hope! Given the exorbitant cost, I would recommend looking at combined non-chemo treatments, like Venetoclax/Ibrutinib, which appears to be giving good remissions after a limited treatment time.
Neil
Thanks for advise.Bottom line is I need to be lucky...
Stay tough and strong! Miracles are happening every day....
Thx. Will anticipate miracles to happen.
👍🏽👍🏽🎉🎉
AAli
I was in w and w in stage 1 for 5 years.
Had I session of Chlorambicil that put me back in w and w for 9 years.
Now in treatment with FCR.
Hoping for 10 plus years this time.
About 3o per cent of people do not progress to treatment so there is no real pattern to the w and w phase. The disease reacts differently in individuals.
Hope this helps you?
Geoff
i was on w and w for less than a year before needing FCR chemo.I completed the full treatment in January 2010 and so far my bloods are ok
unfortunately i have had many infections,the most recent in March this year.this was a severe fungal mouth infection ( thrush ).
my weight level dropped so i am on 2 monthly visits to my Haematologist but overall i feel well
all the best to you Bob
I have just found out from the hospital that I have had stage A CLL for 9 years and the ALC has hardly changed although I was only diagnosed 6 months ago as I thought so I am confused, get on with your life normally for as long as possible,best wishes for the future Maggie [sunflower]
Thanks for best wishes.
Hello
I am curious to know how you know you had CL for 9 years before diagnosis. Were there previous blood tests that showed nothing....I ask because I suspect that my CLL was caused by agricultural chemicals 14 years before anything showed up in a blood test....
Because CLL is a chronic, slowly progressing cancer, it can show up 'retrospectively' in blood tests. That is, it is not unusual to see changes in blood cell counts that may be caused by infection and subsequently resolve, so a doctor may observe lymphocytosis (high lymphocytes) or less often neutropenia (low neutrophils), thrombocytopenia (Low platelets) or anaemia (low red blood cells) and consider them transitory - due to infection or some other temporary cause. Symptom onset is also gradual and can be dismissed due to age, stress, workload and so on. So you may very well go to your doctor and the outcome of the visit is a blood test, you get treated for what ever ails you that took you to the doctor, feel better and both you and the doctor think no more of it.
Later on when CLL symptoms can no longer be ignored or another doctor takes a closer look and the outcome is a CLL diagnosis. If you can access your blood test results years before your diagnosis, then you'll likely see the warning signs. In my case, neutropenia showed up at least 2.5 years before my eventual diagnosis and my GP didn't have records prior to that. I had seen my GP about a raised lymph node (in an unusual place) a year or so prior to that and it was dismissed as unimportant but subsequently confirmed as a swollen node by my haematologist. I noticed a marked change in wound recovery 5 years before diagnosis and fatigue well before that.
Romarin, you may well be right about the agricultural chemicals causing your CLL, but good luck proving it... Ask your doctor to check back through your old blood test results to see when anomalies started appearing, but bear in mind that the CLL may start in the lymphatic system years before it appears in a blood test - and if you present in the SLL form, never. I always request a copy of my results now.
Neil
I hace checked my results and there were low WBC counts 2 years before diagnosis. I have Monsanto in my sights....
Thanks
R
If you had low WBC counts caused by your SLL/CLL, then I would expect that you were neutropenic - low neutrophils and your SLL/CLL was concentrating in your bone marrow (suppressing neutrophil production) and lymph nodes rather than your blood. Or it could have been an illness...
Hello romarin,if I refer you to my post "rejoicing in the unexpected news"this will explain I was diagnosed by my GP just before xmas 5 months ago after a blood test as i had a couple of viris,s,she ask to speak to me telling me I would have to have chemo how wrong was she thankfully, and I was misinformed causing me months of worry only to be told by the consultant this week that I had had CLL for 9 years ,I had never been told this before and he says it hasnt moved and its indolent horray for that. best wishes Maggie [sunflower]
Still curious to know HOW he knew you had CLL for 9 years...! Unless he had blood test results back that far...
Yes he did, he showed me and is sending me a copy,I didnt know anything about it so was shocked and still am,the GP has never mentioned it before but this time it was a young GP at the surjury who decided to inform me just before xmas.
As Neil said, 20-30% of us never need treatment. W+W can last decades.
I wish that percentage was a lot higher
Me too. Look at lifestyle, green tea, and other options that seem to help some.
Was wondering what the % for unmuted staying on w&w and never needing treatment?
I don't know off the top of my head, but I bet it is mostly the mutated crowd.
50% of CLL patients are diagnosed over 70years old... this is the primary group that this applies to...
Don't forget those 20-30% of patients died of other causes... but untreated for CLL...
~chris
😞😢
What kinds of green tea not all teas are the same is organic preferably better?
No expert. I like an organic sencha that I have mailed from Japan by Hibiki-an. Mark Hoffman likes rishi matcha super green. Don't boil the water and don't over steep. My blog has some of my meandering about tea drinking.
Thank you very much dr. Koffman
Can you get that tea in a decaffeinated form? I can’t have caffeine.
How about a green tea capsule?
Depends on the source, most decaffinated green tea has lower levels of EGCG... sometimes it is added back in to the finished product.
Often tea from both China an India has been subjected to banned pesticides. Best to buy tea directly from Japan exporters... you can't rely on the label... test have shown EGCG ranges from none to some in many store brands...
You need to do deep research and not trust the labels. No really safety data. Careful of pills from China- may have pesticides and other unlabeled ingredients and even toxins. Others may have dug deeper than me- I just drink the organic tea I import from nester Kyoto Japan.
I hope W+W does last for years. I was diagnosed in October 2014 and am a stage 0 according to my haematologist. I was informed by my GP a month or so before that, that my white blood count was a bit high and he was referring the results to the haematologist, naively I didn't pay this any attention and just gone on with my life, I had another blood test and then was told I had CLL. My husband was not too surprised by this diagnosis as he has had CLL for 10 years. He has just started his second round of FC after 5 years of remission following FCR 5 years ago. Unfortunately he suffered heart failure following his 1st round of FCR so he has not really been able to enjoy life too much since then.
I was diagnosed December 2006, still in watch and wait. I receive IVIG treatments monthly since Jan 2007 for gammaglobulinenemia. Have fatigue, I tend to stay
away from family and friends with colds or illness. Retired 2 years ago as was working
from home and company discontinued our working from home. Oncologist suggested
not going back out in work field as I had not been getting sick. Filled out disability papers and his letter had me approved within 2 months. Also breast cancer, uterine
cancer survivor and in February just had pre colon cancer cells. Had colon removed
and now have permanent ileostomy. Feeling good. Keep positive thoughts. Cll has
mind of its own. Some patients need treatments sooner than others, keep up with
your appts and blood work. Wishing you a long watch and wait period ..... BJ
I'm also in stage 0 coming up to two years. I go back to my doctor next month. I try to eat healthy, exercise and stay active. I try to stay away from people who are sick, I work as a cashier, so as soon as I get home, I wash my hands, I'm always washing my hands. lol
I found out I had CLL in 2009 and still in W & W with NO outward signs of the disease! In fact if my doctor hadn't found it with a simple blood test I to this day would think I'm perfectly healthy. Have gone from having my blood tested every 3 months to every 6 months to Once a Year. My numbers for WBC are currently at 57,000. Seems like it goes up about 10,000 per year more or less. One year it didn't change at all. I'm 65 years young and hopefully will not need treatment for another 5 years, God willing and the River don't rise (to pan a John Wayne movie)!
Good luck to us all!
I am close to 67 with cll 0 dx 18months ago. I go every 3 months for monitoring. My wbc are stable between 18 to 22. However, RBC, HEMOGLOBIN etc are slowly declining.
Are u still in W&W? Anything u did to enjoy this continuing wait and watch. Or, as my onco says, it is how luckly or unlucky i am?
How has been the quality of life? Did u feel fatigued? I have only this symptom since i was dx. .
best
vinnet
Hi, wish you best sir and pray that my CLL may follow same trend
I'm on W & W after being diagnosed three months ago. My haematologist has recently advised me that when I will eventually need treatment the combination of bendamustine with rituximab would be used instead of the standard FCR. I just wondered if anyone has had treatment with just these two drugs?
Many of our members have had this treatment, with the most recent post from yesterday here: healthunlocked.com/cllsuppo...
Many more posts here: healthunlocked.com/search/b...
healthunlocked.com/search/b...
Neil
good question as im also new to the CLL and on watch and wait and obviously started with devastation as google said max 3 yrs , ouch -then had support from maggies and two now friends have survived with treatment it has to be said one for 11 years and one 25 , but yes your question does make sense with me as doctors said to me dont google , and sent me away for six months with little or no explanation saying to my Gp that marrow was I think the word was "little change" and that some count was 7.8 which was normally 4.4 and a 12 by 10 to the power 3 was mentioned and was goobledook to me . I have seen posts from those that have been 17 years w and w and today below you see one being treated after one year -worrying --however now doing all the right things food water etc merry xmas
I was diagnosed in Nov 2009, had 6 months of FCR IN January 2010. Been in remission since - just have very low platelet count.
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