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CLL

MSDT
Posts: 5
Joined: Jun 2015

Hi there, For anyone who has the same CLL

First time on site and after reading some of your letters I thought I would join. My husband has CLL diagnosed in 2009 and after wait and see from specialist he started his first round of chemo on 6/2015. Dr said lymp nodes very enlarrged, white cells were 145,000 and he has a missing chromozone  (11 q.223 ) from his genetic blueprint of white cells. He is doing once a month for 6 months. After his first treatment his white blood cells dropped to 8500. Dr was amazed but along with that he is extremely tired and he lost almost 10 lbs cause his appitite was effected. 

It is so very important to eat frequently (protein very important) and drink lots of fluids. I have been working hard to get my husband into that routine because he travels with his job and I want him to be ok. No nausea or vomiting thank goodness. His chemo drugs are Rituximab and Bendamustine. Each treatment is done in 2 visits and a steroid and anti nausea meds given also. 

Dr say white cells may go up before next treatment but nothing like they were, Will keep you all posted on how he does. 

gmameme's picture
gmameme
Posts: 1
Joined: Jul 2015

Hello, this is my first time on here so hopefully I'm doing this right. I was diagnosed with CLL in April of this year at 53. my wbc was at 14,000. I was told by my hemotologist/Oncologist I was in "wait and watch".  Needless to say i was researching like crazy and finally had to stop because I was getting so anxious. I've been having some pain near my tailbone for months and called him and he told me it has nothing to do with my CLL and suggested I call my regular GP who ordered an X-ray. I'm waiting for my appointment with her for results. This weekend something has changed in my body. The pain on my tailbone has moved and I feel a lump. Also as I lay here tonight, (morning) I'm feeling what I'm sure are lymph nodes all over my body that ache. My neck, abdomin. has anyone experienced this pain all over? I've also been experiencing some night sweats and day sweats the past few days Along with leg cramps. Sorry this is so long, I'm just hoping that someone here has experienced the same thing? I'm sure treatment is in my near future And I'm trying to mentally prepare myself. 

MSDT
Posts: 5
Joined: Jun 2015

We also read and read up on CLL but if you do just remember if you have trust and faith in your doctor as we do then he/she will know what is the best course of action. Don't make yourself crazy because as you will make yourself feel like you have all kinds of symptoms.Don't panic and by the way my husbands white cells were 145,000 and his lymph nodes were enlarged but he as also had a missing chromosome 11 q 22.3 (this was found out in May when the doctor sent his blood to a special lab to make sure none of the original diagnosos had changed from back in 2009.) He has now finished his second Chemo treatment (of six, done once a month) and his WBC are holding in the 8000's and lymph nodes are shrunk to almost noting to where you can't hardly feel them. My husband was in a wait and see state for 5 1/2 years befor treatment. People can live a long time with CLL per our doctor but just have to be aware that this CLL effects your immune system so staying in touch with your primary doctor is important as well if you have a bad cold or other issues that you need to address.

Above all have faith in your doctor( the specialist) that is their field as well as your primary whom should be staying in touch with your specialist when needed.

Also to let you know that the normal range for WBC are 4.5 - 10.5 so you are not over by that much and that is why the doctor is in a wait and see state. My husband had no pain anywhere except his lymph nodes may have been a bit tender if touched. His scans he had in June just before is first treatment showed no other issues.

I hope this has helped you and if you have any other questions or concerns please send an email or post. I am no doctor but I will do my best to ease your anxiety.

HANG IN THERE....MSDT  Wink

tscadron
Posts: 12
Joined: Jun 2013

I agree completely with MSDT!  Don't let your imagination run all over the place with possible CLL symptoms.  You sound like you're at a very early stage.  I'm a 52 year old female diagnosed with CLL two years ago with a WBC of 20,000.  I'm now at 30,000, with a few misplaced lymph nodes popping up, but still on watch and wait.  Like you, I'm starting to get night sweats and hot flashes and you know what, i'd bet money it's menopause!  Read about CLL so you're informed, and keep up your blood tests with your oncologist.  But beyond that, try to forget about it and just try to live a healthy, low stress life.  I was completely freaked out when I was diagnosed.  That's normal.  But I'm still running marathons (3 on my calendar for this fall) and an occasional triathlon.  I might not always be able to keep that up.  Still, the real tragedy, in my view, would be to waste this "watch and wait" period when I'm still asymptomatic worrying about my CLL.

ThatGirl1961
Posts: 4
Joined: Aug 2014

It took five years to diagnose CLL/SLL, but I was finally diagnosed in 2004 after my first symptoms (1999) at age 38.  I do have pain when my nodes are swollen and reactive (fighting infections), but I also have bone pain and this has been pretty constaint since 1999.  Last year, I started having abdominal pain and my CTs show very large nodes entangles in my intestines.  These caused me to lose 70 lbs.  I'm 54, but I look like I'm 84 now.  Most people I know don't have it so rough.  I did ask for pain meds.  One doctor will give them to me and the others think I'm a middle age woman hooked on opiates (I am not, in fact I use them very sparingly and only when the pain is acute).  Ask your oncologist for pain meds.  I still get night sweats (nothing has changed that), but I sleep with fans that I turn on and off and a sheet and blanket that I pull on and off.   I also take sleeping pills now to try to stay asleep despite the sweats. I've had treatment three times since 2004 and I travel to Houston to see a CLL specialist whom i adore.  I was never watch and wait because my nodes were so huge by the time of diagnosis and the number of infections I was getting has made me immune to most anti-biotics.  Treatment is really easy for CLL, so don't worry.  I worked throughout every cycle and never missed a day of work.  BTW, best surgery i had was a tonsillectomy 3 years ago.  I no longer get strep throat (one of the recurring infections I was getting because of the CLL).  Good luck...pain pills!!!

oldnwizr1
Posts: 4
Joined: Aug 2015

"night sweats" are a major question they ask each visit. Please inform the doctor that you are having these.

oldnwizr1
Posts: 4
Joined: Aug 2015

"night sweats" are a major question they ask each visit. Please inform the doctor that you are having these.

sealbeach67
Posts: 5
Joined: Nov 2013

OMGosh. Reading your blog was like reading a page from my life. I was diagnosed in 2012. My count was 12,000. I was taken by surprise. What was this CLL? I was told as well that I was in the "wait and watch" group. So I hit the internet. I looked and read every site I came across. The best thing I did for myself was to stop surfing the internet. So I've settled down since 2012. No more panic searches.

My count is currently 23,000. Got that number last Monday. The difference now is I don't panic. I jusge all my blood results by how I feel. I do everything I did before 2012. I take zumba, I belly dance, I try to eat a little healthier than I did before. But the one thing I don't do is I don't dwell on the numbers. The numbers aren't the factor...the factor is how you feel. You can have high numbers and no symptoms. So stay away from your computer, find a doctor you can talk to and share your concerns. And then go and enjoy your life. Don't be harbored by those darn numbers.!

Sealbeach67

ctb123456
Posts: 1
Joined: Mar 2016

We are about the same age and I was diagnosed about 2 1/2 years ago. Some of the problems I think you have been feeling is just worry. I do that also! See everything that seem to feel a little different you start believing it must have something to do with my CLL. But I have waited and ask my doctor during my three month check up and none of mine have been because of CLL. Mine have been mostly because of age changes. You know the acks and pains you get as you become older.  I think the hard part is keeping postive and not getting depresss about having CLL. It really depressing to know at the end of this three months your world may change. I wish many days that I would never have been diagnosed. That way it would not be on my mind and I could live my life more care free with out the worrying. Stop thinking about it and live life as normal is very hard. The reason I open this sire today was just to talk with others that have the same issue.

Dolbeer1
Posts: 1
Joined: Jul 2016

Hi, I've just been diagnoise with CLL on 7/15/16 and I'm 53 years old.  My WBC was 16.6.  I feel the same pain as you did.  Lymph nodes all over ache.  I've also had cramps in both feet.  My doctor said that has nothing to do with CLL.  I've also have had diarreha/loose stool for the last 4 months.  Did you have any problems with that?  My neck abdomin hurt too.  What did they do for you?  How are you doing today?  Why is there not current posts on this page?  Yours was the last one and that was a year ago.  Sorry, this is new for me.  Thanks,

Caity_Mae's picture
Caity_Mae
Posts: 5
Joined: Aug 2016

I don't think that your comment is super long. Don't be too hard on yourself :) I am pretty sure the night & day sweats are normal but I am not sure about the pain sorry good luck on your mental prepping & treatment

Diane.IL
Posts: 5
Joined: Nov 2014

Hi

This is the first time I have written.  I was diagnosed w CLL Nove 2014 with a WBC of 33000.  Ive seen my oncologist twice since then, the second time was today.  My WBC is 56,000 but my glucose is ok and he just rescheduled me for April.  Im 54 and have hot flashes and night sweats, and I have enlarged lymph nodes.  We don't even talk about any kind of treatment yet and today he told me to "enjoy your life" as I could be in stage 1 for a decade. 

I thought it may help to write.  My WBC is high but my other tests are ok.  No infections yet, no stomachaches, vomiting, weight loss.  Doc did insist I get the flu shot today which I am ok with.

It's all new to me, and I try to forget about CLL between visits and just take care of myself. 

Diane.IL
Posts: 5
Joined: Nov 2014

Hi 

Please see my first post at the bottom of this page. 

petebeth
Posts: 3
Joined: Dec 2015

I'm 72 and was just diagnosed stage 0 about a month ago. WBC at 22,000. Reading these posts really helps to put things into perspective.

portchester62
Posts: 1
Joined: May 2016

hi i am new to group just been diagnosed with CLL am only 53 anyone want to be friends so can talk about

 

ASK2016
Posts: 1
Joined: May 2016

Good morning,

I am 61 years old, new to this site today.  

I was diagnosed with CLL in Feb 2016.  For the past 3 years  I have picked up every germ that passed my way.  I would spend days in bed, that progressed to weeks, running a low grade fever all the time, and l no one could tell me why I was so sick.  Literaly, I lost 3 years of my life, now that was depressing for me. The main thing is to have a dr that you can REALLY talk to, you don't want to feel like you are constantly complaining and no one listens. That is why I never complained about night and day sweats, just thought that was a hormone thing that I had to live with and I stopped telling Drs that I always ran a low grade fever.  I was in a Drs office every 4-6 weeks being treated for different infections.  In January, 2016, after a routine blood panel was completed my rheumatologist told me my lymphocytes were too high and told me to see a specialist.  

I just completed weekly doses of Rituxan, for 4 weeks.  The night and day sweats aren't totally gone, but I am interested in life again, praise God for miracles!  Mentally I feel great, still tired, but the oncologist said the rituxan made my B12 drop too low.  I am receiving a series of 4 weekly shots to increase the B12 level.  Soon I will be able to pick up where I left my life 3 years ago.  Hopefully, in three weeks,  the next PET Scan will confirm the rituxan worked and I will feel good for at least the next year.   Also, I can forget the CANCER word for a while And my poor husband will get a much deserved break.  

I hope this quick review of my current life will help you.  Keep your chin up and make the best of everyday that you feel good..

tscadron
Posts: 12
Joined: Jun 2013

Hi folks:  It's been a long time since I've posted here.  I was diagnosed with CLL in May 2013 and have been on watch and wait since then.  I'm still asymptomatic, although I do find that colds hit me harder than most other people.  It's taken me 3 weeks to shake my summer cold.  Also, I now have enlarged lymph nodes on my neck.  They don't hurt and, while I can tell they're bigger than normal, my husband says noone else would notice. On the happier side, I'm still able to keep very active.  I've been a running coach with a marathon program for several years, and am still able to run long distances.  Slowly, but I was never fast anyway!  I do feel more sensitive to heat and humidity but some of that could be age (I'm 53).  Whenever I worry that my exhaustion could be CLL, my husband counters that it's probably that I'm overdoing it on running/swimming. He's probably right, but with CLL, it's hard to avoid days where you feel like you're just waiting for the shoe to drop.  Overall, I guess I'm thankful that I'm still able to do what I love doing.  I need to appreciate that more, because things could change down the road.  Cancer teaches us all that, doesn't it?            

Ajohn
Posts: 1
Joined: Aug 2016

Happy to find a site like this and wondering if there are folks here with fibrillary glomerulonephritis (FGN) caused by CLL.

My CLL was officially diagnosed in late 2012; however I suspect it was active a full ten years earlier when I told the lump on my neck was a benign tumor. Three weeks ago my creatinin took a big jump and off to a kindney doctor I went. After many labs and a biopsy, I now have been diagnosted with FGN, which is indeed rare, occuring in less than 1% of kidney desease patients. The kidney damage is permanent and I was told by my nephrologist and oncologist the only way to stop deteriation of the kidneys is to control the CLL, which to this point was only being monitored twice a year. Now with some urgency to prevent additional damage to kidneys I will start Ibrutinib next week and have a question for the community:

1. Anyone out there with Ibrutinib experience and if so what is your personal experience?

The drug manufacturer's website has to name every possible side effect, it can be very dishartening; the doctors seem to think it my best option that will require me to take the drug from this point on.  

Thanks for a reply...

mken03
Posts: 4
Joined: May 2016

Yes i have experience with Ibrutinib. I did not have any side effects from it at all.  Its all personal I understand but I did not have issues.  

On the subject of CLL transformation, I was being treated for my CLL which after "watch and wait" required treatment based on counts and swelling of lymph nodes.  The treatment was really successful until it transformed into lymphoma.  

good luck.  let me know if you have any questions i can answer further. 

 

littlerocker
Posts: 1
Joined: Jul 2016

In March 2008 I was diagnosed with CLL.  Had bloodwork to follow-up on my heart attack in 2007.  My counts were 15,000 which isn't too high, but my primary care physician was on top of it and sent me to the oncologist. 

Have had regular appointments using the "watch and wait" plan.  About 3 months ago, fatigue reared its ugly head.  I was used to walking, doing Zumba, and attempting Pilates.  Couldn't do any of those activities and I was bummed out.

Had my regular checkup with the oncologist first of July 2016 and my counts had jumped to 113,000.  One month later, I had another test and they had jumped to 120,000.  I have had two of four weekly infusions of Rituxan and, after the first one, my counts dropped to 85,000 and I felt like a new person.  Only a minor reaction at the time of infusion.  No after side-effects. 

Hang in there.  During the "watch and wait" period, I ate better and was physically active.  Sure it had a lot to do with me not needing any treatment for 8-1/2 years.   Cutting out sugar, in my mind, made the difference.

To everybody that is going through this or will be going through it, family and friends are awesome.  I wish I had discovered this page earlier in my diagnosis.

 

Caity_Mae's picture
Caity_Mae
Posts: 5
Joined: Aug 2016

My dad was diagnosed with CLL about 6 years ago. He is over 65 and doing very well at the moment (from what I can tell he likes to act tough of course so sometimes it is hard to tell...) 

Just introducing myself to the community. Hello to everyone I look forward to meeting some very wonderful people!

-Catie Cool

Caity_Mae's picture
Caity_Mae
Posts: 5
Joined: Aug 2016

Good luck with your husband! It sounds like he is doing OK. Definetly keep us posted...so far this was helpful. Thank You!

trailtrimmer
Posts: 1
Joined: Sep 2016

First post here. I read about the CLL study using Green Tea extract that was conducted at the Mayo Clinic. On average, study participants showed a 20% decrease in white cell count as well as a measureable reduction in the size of affected lymph glands. I was diagnosed with CLL in 2014 with an initial reported white cell count of 29. Counts at 3 mos intervals since then were 31,39, 49 (held for 2 clinical visits, then an increase to 59. I then started with the green tea and over a 3 month period my WC count increased to 88. BTW: I am a 72 yr old male who is otherwise asymptomatic clinically and I continue to exercise regularly with no fatigue. Since my last visit to the oncologist, I have read that green deal is also used to boost the immune system by...RAISING white cell counts. I'm assuming that blood tests cannont discriminate between healthy white cells and  CLL impaired cells. I have since stopped taking the green tea extract. Any thoughts or comments would be greatly apreciated.

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