Re: Complications of CLL or just bad luck.?

[Guest guest]

There are three other things that could be causing your

problems.

Are you, by any chance, on any medications besides the

antibiotic? Many can cause all sorts of gastrointestinal

side effects like the symptoms you are dealing with.

Another possibiltiy is an allergy or a problem with foods.

The foods most likely involved would be milk and/or wheat

products.

I too have been dealing with stomach pain, gas and bloating

and it seems to be related to a couple of the meds I am on

and have recently stopped with a decrease in the

pain/gas/bloating. I already know wheat and milk are an

issue with me and rarely eat/drink either.

And of course the last could be related to stress since the

symptoms started after your diagnosis.

Helene wrote:

/message/15342

[Guest guest]

Hi ,

Thanks for replying. I wish it were that easy to dx. I had

hives two times before. I went to several doctors. It is

related to heat, not food allergies. I was unable to get an

actually diagnoses. The meds I'm on, I have been on for

years with out problems. I found one article that said there

was a relationship between CLL and SIBO. I can't find the

article right now. When I do I'll get back to you. Stress

was out ruled by my Oncologist and Gastroenterologist. I am

stressed, but they both believe there is more to it.

/message/15348

[Guest guest]

I do not have your problems with my CLL, but I am writing to

wish you well. Where do you go for treatment. it is

important to go to the best doctors available in your area

because not everyone knows about CLL.

For example I live in Providence, RI, but I go for treatment

to Boston's Dana Farber Hospital because our locals don't

know enough about all my complications. I travel a two hour

round trip to see the Boston doctors monthly and sometimes

more often, but it is well worth it. I hope you find the

best doctors available soon.

People can live a long time with CLL. My brother lived 19

years with CLL, dying at 77. He was treated at Sloan

Kettering in NYC.

Carolyn Swift, age 82, dx CLL 2001, dx Merkel Cell Carcinoma

which was removed surgically in 2009, currently have stable

lung cancer that is too close to my heart for surgery,

taking Tarceva to keep it stable. With all these problems, I

remain active, taking courses in poetry at Brown and walking

a mile daily at the gym as well as using weight machines

three times a week. Life goes on even with CLL.

[Guest guest]

Wow ditto I don't have lung cancer but I too travel to

Boston two hrs every month for years and is sooooo worth it

- Cll 9 yrs - I'm 60 - good advice that previous person just

sent you!! Good luck - keep fighting. I had a fundraiser

this weekend and raised over 4,000 for cancer!!

[Guest guest]

Are you looking for confirmation of the SIBO/CLL connection,

because its definitely out there, I googled it, or are you

looking for some advice on how to proceed?

If it is the latter, then you might want to check out diets

and strategies for Candida overgrowth. Coconut oil seems to

be an integral part of the diet.

Just google " coconut oil and SIBO " . You also might want to

check out " CLL and Vitamin D " and " SIBO and vitamin d3 "

Good Luck.

[Guest guest]

There is no way to be certain without actually seeing you &

the related test results, but it seems very unlikely that SB

bacterial overgrowth (a reasonably common condition) is

related to CLL.

Some patients with CLL manifest CLL related GI symptoms,

though symptoms of boosting & gas and irregular BMs are

quite common and have multiple potential causes.

Rifaxamin (Xifaxin) works quite well in treating SBBO as

well Irritable Bowel Syndrome (the symptoms of which are

similar & the prevalence of which is greater).

I am a gastroenterologist who has CLL. Ironically I have had

frequent GI symptoms as a side effect of one of the

prophylactic medications which I have had to take for most

of the past 3 years. I have used brief courses of Xifaxin to

obtain symptomatic relief at least 6 times though all of

this. Fortunately I was able to discontinue the offending

drug several months and no longer have any GI symptoms.

Good luck,

Rick

[Guest guest]

This of interest only to SIBO/IBS sufferers:

I also have suffered from SIBO/IBS for the last four years

or more. I have taken Xifaxan treatments twice with

moderate success. Whether the problem is caused by CLL per

se is questionable but the combination of chemo which

certainly did leave me with a sensitive digestive tract and

a compromised immune system from the CLL may certainly have

contributed to the SIBO. Interestingly, my most recent 6

months of BR Oct 2009-Mar 2010 seemed to knock out the SIBO

at least temporarily but the last six months it has

returned. I recently had a colonoscopy with biopsies, to

rule out other complications, which were negative. So, I am

on another 14 day regimen of Xifaxan to see if that will

give me some relief, albeit temporary. That antibiotic at

the dosage of 3@550mg per day makes me tired, a bit

uncomfortable and fuzzy in the head. But hopefully I will

get some relief. I try to follow the diet described in " A

New IBS Solution " by Dr. Mark Pimental of Cedars-Sinai

Motility Center. I also get some purely symptomatic relief

from taking 4 mg Zofran generic plus one tablet of Colace

softener twice a week, though it can still cause some

constipation.

Most recent Xifaxan clinical trial for IBS:

http://ibs.about.com/b/2011/01/09/the-two-week-xifaxan-for-ibs-study.htm

or http://tinyurl.com/5uaosn6

[Guest guest]

Hi ,

Yes, I was looking for confirmation of the cll/sibo

connection. I also googled it and I only found one mention

in an article from the World Journal Gastro at wjgnet.com.

Would you please let me know where you found the articles? I

would love to hear from you again and I will check out the

coconut and vitamin d3. Thanks.

Helene

[Guest guest]

An excellent (and value priced) source for most of the best

brand probiotics/acidophilis (and any other vitamins such as

vitamin D3) is http://www.vitacost.com

VitaCost carries name brands for 25-40% below regular retail

prices.

Vitamin D3- see attached link to a CLL Topics update

12/12/09 on the importance of vitamin D3 for us folks with

CLL.

http://updates.clltopics.org/1704-vitamin-d3-make-sure-you-are-not-deficient

CLL Topics has many articles on vitamin D3 & CLL. Here's an

excellent overview of the subject linked below.

http://www.clltopics.org/VitaminD3/EssentialforHealth.htm

Mayo Clinic also released a paper 11/3/10 titled " Mayo

Clinic Finds Insufficient Vitamin D Levels in CLL Patients

Linked to Cancer Progression " Go to

http://www.mayoclinic.org/news2010-rst/6033.html?rss-feedid=1

Patti Kruse

/message/15383