Long Wait and Watch time

[JayPay]

Can anyone share stories of having CLL Unmutated and being on W&W for a long time? I just need a booster today. Please.

[sllincolorado]

Hi JayPay. In the past few days I saw someone reply to a post that they were unmutated and on watch and wait for 5 1/2 years. Maybe that person and a few others will chime in. Not sure what your concept is for "long time". On the shorter timeline: I am unmutated, tp53 and 17p and was on watch and wait for 2 years. I feel very good on the meds I am taking and my counts are all in the normal range. I realize this can change but so far, so good.

[1962jns in reply to sllincolorado]

What meds are you on?

[sllincolorado in reply to 1962jns]

I have been on acalabrutinib (calquence) for about 18 months. I started on ibrutinib but moved to acalabrutinib due to side effects. Many people on this site have done very well with ibrutinib without side effects it just did not work for me. Given that I am unmutated,17p, tp53 and present as SLL, my guess is I will need to add something like Venetoclax in the next year or so - but so far I am feeling good, work full time (virtual employee so I am working from desk at home) and hike as much as possible. My doctor says not to worry until there is something to worry about - trying to to that.

[Rpshe1]

I’m unmutated and was on W&W 4years, 10 months before starting treatment. April will be 4 years since the end of treatment. Hoping for at least another 4🤞🏼

[HopeME in reply to Rpshe1]

What was your first treatment Rpshe1?

Thank you

[Rpshe1 in reply to HopeME]

I was in a study with Dr Sharman in Eugene, Oregon. Bendimustine & Gazyva was the study. Ibrutinib wasn’t FDA approved then.

[JayPay in reply to Rpshe1]

What was the determining factor in their decision for you to start treatment?

[Rpshe1 in reply to JayPay]

First my WBC tripled from Sept 2014 to Jan 2015. By May 2015 my RBC & Platelets had dropped to just below standards. I saw a CLL specialist at Stanford in California who stated I should consider treatment soon. When I asked what’s soon? He stated within 6 months. Beginning of Sept 2015 my RBC dropped to single digits and platelets dropped to double digits. I had a consult with Dr Sharman in Oregon who stated the sooner the better. If my counts dropped to low I would risk a blood transfusion when I started treatment.

He recommended the 3yr study (based on my Trisomy 12 & unmutated status) he had going that he felt would give 5-7 years before needing treatment again. I started Bendimustine & Gazyva Nov 2015 finishing 6 cycles April 2016. Labs, CT Scan & BMB at the end showed no signs of CLL. The study has ended & I see him every 6 months now. Told him I’m shooting for 10 yrs🤞🏼

Yes I had enlarged nodes prior to treatment, especially in my neck. Before & after pics are unbelievable even in the first week of treatment! Some fatigue but I was retired so it didn’t affect me as much.

[thb4747]

Hi JayPay. I’m unmutated and have had CLL for over 18 years. My first round of FCR treatment was 7 years after diagnosis.

[gingerlovesal]

Hi JayPay,

My husband was on W&W for 7.5 years. He is also unmutated. Took the FCR (our only choice in Switzerland) for the full course of 6 months and had minor side effects (but also is hausfrau=I am income earner). He’s doing well 7th month out and they expect for a good long tome. It’s an individual disease as many will tell you. There are an arsenal of drugs and combos out there to help. Stay on this lifeline of support and commanderie and you’ll get through this.

[Bubnojay]

Eight years since diagnosis, and no treatment on the horizon.

Try not to worry so much and take care of yourself.

See PaulaS post on living with CLL.

Best wishes

Bubnjay1

[Nikkij81]

My hubby is eight years diagnosis and still on w +w with no treatment take care of yourself

[very]

My husband was on W&W for 19yrs, he had treatment 3 1/2 yrs ago and he is in remission.

jenny uk

[julienpr]

I've been on W&W for about 15 years and still no treatment on the horizon. Most blood counts are on the low end of normal or slightly below, except my white blood cells have crept up from around 14K at diagnosis to @125K now. No noticeable symptoms yet except that I have just moved from 20 years in the tropics to a cold winter in France and have had a few sinus infections and a constant slight cold, I am pretty sure is due to a low immune system. I travel a lot and take no special precautions. I exercise a lot and pretty hard, and take it one-day-at-a-time.

[CBeauty in reply to julienpr]

How does the climate affect things, do you think? I live in the grey Pacific Northwest and feel a real uptick in energy when I go south. Also what kind of exercise do you do? I feel that is key for me, when I feel low energy or "prickly" I go for a fast walk and my feel so much better. Thank you.

[julienpr in reply to CBeauty]

I doubt the climate has much to do with CLL progression. But living in “warm” makes life easy because you don’t have to deal with temperature changes and adjusting to them. Up until moving to Marseilles, France I paddled my racing kayak or rowed my single rowing shell about two hours per day ( competitions once a month). Then I speed walked for an hour. Now I live at the foot of the mountains and hike around 2-3 hours a day (lots of steep uphill). In a month or so when it warms up I will add in 1-2 hours per day of paddling or rowing. I’m skiing in the Alps right now!

[CBeauty in reply to julienpr]

Thanks - that was very inspiring

[Quarry]

8 years on W&W and, whilst early barrage on AIHA front, all quiet on the CLL front. In UK, they don't measure mutated/unmutated until treatment, so I am in blissful ignorance!

[Splash24]

recently passed 10 years on W & W

[Murman]

I am going on 12 years watch and wait with no treatments yet. 11q deleted unmutated with a current wbc of 200 and numerous enlarged lymph nodes. So far energy level is fine with no night sweats.

[JayPay in reply to Murman]

Where were your lymphodes enlarged?

[Murman in reply to JayPay]

Yes I have an enlarged spleen and numerous enlarged lymph nodes in the neck area and under the arm pits

[JayPay in reply to Murman]

Still no treatment yet?

[Murman in reply to JayPay]

I have had no treatment for CLL but I am taking IVIG infusions monthly

[Big_Dee]

Hello JayPay

I am un-mutated and was on W&W for 14 months, but now about one year post treatment and feel great and still here. Blessings.

[JustAGuy]

I am 4 years w&w, trisomy 12, probably unmutated but test was inconclusive, very active, feel fine.

Lots of members on this site much longer who are either still on w&w or post treatment.

Here's a site with positive CLL stories (don't seem to be updated much but it's got encouraging accounts)

livingwithcll.info/index.ph...

[uihwki]

I'm unmutated with normal karotype - watch and wait for slightly over 5 years. Started Acalabrunitib 18 months ago and doing FANTASTIC!!! Enjoying everyday and seldom even think about my CLL.

[Okeefish]

Yes and Yes! I found out that I had CLL in January of 2001 and have been on W&W every since! My Dr said, “You are lucky, you will die with CLL, not from it!” The first 18 years was no significant changes in my life, other than explaining why my WBC was elevated. It started in the high teens and gradually over the years got to the 30 to 40 range. About 3 years ago I became susceptible to sinus and bronchitis like infections and was often on antibiotics. In July 2018 my Dr suspected that my immune system was going South and tested my IGG level. It was in the 300 range so I started IVIg infusions every four weeks. (Normal range is somewhere between 750 and 1750 or thereabouts). I’m beginning to have a lot of fatigue which may be age related since I’ll soon be 82 years old? If you have no bad symptoms, I would recommend that you live your life to the fullest, and let an indolent puppy sleep! God Bless and good luck on your journey!🙏🙏🙏🙏

[peggyp14 in reply to Okeefish]

Thank you so much for your post!

[aptucxet]

JayPay, I am unmutated with 11q deleted......unfavorable markers, but have been W&W since diagnosis in 2013. 85 years old......saw my hematologist this morning and still W&W......."see you in 6 months" ........so good luck to you.

[Bryanb]

Unmutated 2 years W&W but numbers pretty much same as when diagnosed. Probably get a few more colds and sinus infections during winter but outside of that everything is fine. I know 2 years isn’t necessarily considered long but thankfully still no real change in 2 years.

[Dakota10]

I am new to CLL, and don’t know a lot about it yet. I am on w&w. My original doctor told me he had a patient that was on w&w for 20 years.

[vog292]

I was on "wait and watch" from 2006 to 2018. Then CLL Stage 3 . After that since Oct. 2018 on Imbruvica (imbrutinic). Only initial reaction was a rash on the face. Now in Feb. 2020 after 17 cycles of Imbruvica , almost back to normal CBC and feeling normal. I suggest serious attention to good nutrition and daily exercise. I have a treadmill in my small apartment, on which WALK about one hour each day. (Also just a half an hour at a time). I also walk up stairs daily. Exercising the large muscles for walking are important for absorption of all intake (vitamins, RX ) . I am 85.

[Hazel33]

I’m almost 9 years WW. No idea about being mutated or not. My wbc is stable at 80 and no treatment has been needed so far.

Hopefully I-will never need treatment, and I hope you are blessed with the same.

[ZeeZeeC]

I was just diagnosed a few weeks ago. I get my genome study back in a week and will find out more.... really hoping for good news and that my W &W will be a long, long time.

[Jayhn in reply to ZeeZeeC]

Any update?

[Nigel-Q]

I’ve been on watch and wait for four years now , when told I was made aware it was found two years previous but I had slipped through the net, so it’s at least six years now , no symptoms , just an annual blood test . I’m 68 years old . Last autumn I failed a bowel cancer screening test , six weeks later I had a right sided hemicolectomy, two months later all good, no side effects , was given the all clear from cancer 82 lymph nodes removed during op ‘ post op biopsy found non were cancerous ,cancer caught early thankfully , my lifestyle and diet should have prevented cancer , some might say unfair to have two cancers diagnosed in four years but I turn it around and say thanks to the NHS I’m a lucky man with one and I’ll keep waiting for the other one to kick in if it ever does and deal with it then . ! I think you have to deal with what life throws at you and get on with it . No one ever said life was fair .