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Medical Forum / Diseases and Disorders / Arthritis / April 2006

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info on lymphoma?

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johnie - 10 Apr 2006 06:53 GMT
I don't have lymphoma but know someone getting treated for it and one
doc says it was brought on by the RA. Would appreciate anything you
could share about that or treatment in general. Thanks.

johnie
Don W - 10 Apr 2006 07:42 GMT
johnie.

A lot depends on whether it is Hodgkin's or Non Hodgkin's
Lymphoma as far as treatment is concerned.
I was treated for Non Hodgkin's Lymphoma and am in
remission.  I will share some more later, it
 late and going to bed now.

Don Whitely

> I don't have lymphoma but know someone getting treated for it and one
> doc says it was brought on by the RA. Would appreciate anything you
> could share about that or treatment in general. Thanks.
>
> johnie
johnie - 10 Apr 2006 12:05 GMT
> A lot depends on whether it is Hodgkin's or Non Hodgkin's
> Lymphoma as far as treatment is concerned.
> I was treated for Non Hodgkin's Lymphoma and am in
> remission.  I will share some more later, it
>   late and going to bed now.

It is non-hodgkins Don. I appreciate anything you can share about it.
thanks,
johnie
Don W - 11 Apr 2006 01:00 GMT
johnie,

I had Non Hodgkin's B Cell Follicular Lymphoma at stage 3.
My tumor
was located by my diapraghm  There are various forms and
stages of
Non Hodgkin's Lymphoma.  Without the intervention at that time I
had a three to six month life expectancy.  Thanks to the
persistence
of a third year Resident in Internal medicine who kept doing
blood
tests and did a chest  xray that showed a spot,  which
confirmed as the
tumor after a follow up PET/CT Scan and a needle biopsy
confirming
the malignancy.

Everything I have to share will be shared on the basis of
what worked for me,
it may not be appropriate or work for your friend. I had
five chemo infusions
of what they called R-Chop.  The R in R-Chop was Rituxan.  I
was also given
Nuelasta every time.  Before every chemo a very complete
blood panel was done
as well as before every CT or PET/CT scan.

My chemo infusions started in June and lasted to the end of
October, but could
have lasted for as long as 9 months had I not gone into
remission. They used pet
scans and ct scans to determine exactly how I was
progressing.  I was given a
medication to take to prevent vomiting.  It worked for me
and I never had
an upset stomach.  Each infusion lasted about six hours and
they feed me a light
lunch and as much juice as I cared to drink.

Coupled with my RA, Fibromyalgia, Spinal Stenosis and
osteopenia I had
very little energy and spent time in bed off and on
depending on my pain level.
Oxycontin 40 MG ER proved to be the most effective for pain
when I went home
I had many different pain meds in the hospital including
morphine shots.
I now us the 5mg Fentanyl patch and 5mg Oxycodone.

In September it was determined that my kidney stones had
reached a size
requiring lipotripses.   In addition to the stones both of
my ureturs were almost
completely blocked requiring stents.  My Urologist used
laser lipotripses to break
up the stones which was not very painful at all.  However,
the stents were the most
painful thing I have ever had.

Somehow I developed an infection and spent seven days in the
hospital getting
IV injections of Vancomycin, a powerful  anti-bacterial. And
did several more
weeks as an out patient at our local Medical Center.  No way
of determining if
it was due to a chemo treatment or the stents, but most
likely the stents.

My Oncologist said it was impossible to determine if the RA
had anything
to do with the Lymphoma.  The CDC statistics show that 30%
of RA patients
may develop Lymphoma.  I was also on Embrel which has a
possible side
effect of Lymphoma. My Mother had colon cancer and my
Grandmother
had breast cancer.

My Oncologist will do another Pet/CT scan in June and then
start me on
Rituxan in July to assist in keeping me in remission.  If he
had not started
me on the Rituxan my RD would have.  Rituxan was a cancer
drug before
being approved for RA.

http://www.lymphomainnovations.com/?spg=PPC
http://www.gene.com/gene/products/information/oncology/rituxan/index.jsp
http://yourmedicalsource.com/library/lymphoma/NHL_types.html
http://www.neulasta.com/patient/index.jsp
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_Is_Non_Hodgkins_Lympho
ma_32.asp

http://www.uihealthcare.com/depts/cancercenter/patients/webresources/index.html
http://www.uihealthcare.com/depts/cancercenter/patients/webresources/index.html

> I don't have lymphoma but know someone getting treated for it and one
> doc says it was brought on by the RA. Would appreciate anything you
> could share about that or treatment in general. Thanks.
>
> johnie
johnie - 11 Apr 2006 04:40 GMT
Don, thank you very much for sharing that. It really is helpful just
hearing about the process. I know that you have been thru some
extremely difficult weeks. I hope you never have to think about it
again. This is my prayer for you for what its worth.  AND,  Thank god
for RESIDENTS and their persistence. 3 to 6 months will certainly get
your attention.
Damn stones was not what you needed. And bet your correct in blaming
the stents for infection. Know someone who went thru that last summer
and was in-house for IV treatment for nearly a month.
I hope things continue to improve and all this will slowly fade as a
memory.

johnie

> johnie,
>
[quoted text clipped - 95 lines]
> >
> > johnie
Don W - 11 Apr 2006 06:25 GMT
I have participated in the national arthritis survey
conducted by the
National Data Bank for Rheumatic Diseases In Wichita, Kansas for
about six years now.  They are now in the process of contacting
all of the participants who have Lymphoma and asking permission
to use their cancer related medical records in a joint study
with
the FDA to research the possible causes of Lymphoma in RA
patients.

I realize the importance of any breakthrough this might
generate I
will probably participate.

My Rheumatoligist has been deeply involved in the roll out of
Rituxan for use by people with RA.  Through him I have
agreed to do
interviews concerning my experience with Lymphoma and RA while
getting Rituxin.  I am willing to help get this information
out to those
people suffering from RA if and when they call on me.

I have been blessed with having some great Doctors.  My
Oncologist
has stopped my wife in the main lobby of the hospital when I
was there
for another appointment to ask if I was OK and not having
any type
of serious problem.

I am glad the information helped,  if I can be of any
further help E-Mail me.
I hope your friend is going to be OK.

Don Whitely

> Don, thank you very much for sharing that. It really is helpful just
> hearing about the process. I know that you have been thru some
[quoted text clipped - 109 lines]
>>>
>>>johnie
 
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