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Medical Forum / Diseases and Disorders / Cancer / May 2004

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Aggressive Non Hodgkins Lymphoma

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Barrie - 30 May 2004 11:41 GMT
My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
for the second time in 3 years and any information on web sites, treatment
and prognosis would be appreciated. She is going into hospital for Bone
Marrow & stem cell Transplant treatment but we know so little about the
disease and want to become more knowledgeable about its causes & effects.

Many thanks
Barrie - 30 May 2004 11:46 GMT
Sorry, further to the above my mother died of it and I wonder if there is
any test they can carry out to aid in the diagnosis of NHL.

Many thanks

> My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
> for the second time in 3 years and any information on web sites, treatment
[quoted text clipped - 3 lines]
>
> Many thanks
Alayne - 30 May 2004 12:39 GMT
> Sorry, further to the above my mother died of it and I wonder if there is
> any test they can carry out to aid in the diagnosis of NHL.
[quoted text clipped - 8 lines]
> >
> > Many thanks

Hi Barrie,

So sorry to learn that you are facing this situation yet again, particularly
as you have already lost your mother to this dreaded disease.

I have no experience in this particular matter (my experience is only with a
GBM4) but would like to offer you a Hug as the least that I can do.

Best wishes with the fight.

Alayne
J - 30 May 2004 20:42 GMT
> Sorry, further to the above my mother died of it and I wonder if there is
> any test they can carry out to aid in the diagnosis of NHL.

Hello Barrie, For some reason I thought NHLymphoma was more environmental.
Another relative (of a patient) here (Karen Lynn) is exploring work-related
issues.
I've seen mention of pesticides.
I've seen mention of hair dyes http://tinyurl.com/2tzcm American Cancer Society
website.

If you're wondering about a screening test for you - I'm sorry I don't know if
there is one, perhaps you could ask on the ACOR list
http://listserv.acor.org/archives/nhl.html (or http://www.acor.org - select mail
lists, select N, select NHL, then "join", provide a screen name and a valid
e-mail address. It's my understanding that they e-mail you back a confirm that
you can start participating.

http://www.lymphomation.org/tests-labs.htm has prognostics but I'm not sure that
I saw mention of relapse there.
If you click on "about Lymphoma", that appears to be the start page.

While I'm here and before I lose them/it
Stem Cell http://www.nbmtlink.org/faq.asp and/or http://www.nbmtlink.org/sg.asp
Survivor's Guide,

More later,
J
Karen Lynn - 31 May 2004 00:26 GMT
Hi Barrie and J,

I emailed Barrie privately to send him a document I have been compiling
about the causes of NHL. One study, found at
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstra
ct&list_uids=11676898

concludes:
The etiology of most NHLs is unknown. The most important risk factors are:
a) congenital and acquired immunodeficiency;
b) viral (human T-cell leukemia virus type-I, Epstein-Barr virus, AIDS
virus), and bacterial (Helicobacter pylori) infections;
c) therapy with diphenylhydantoin and antineoplastic drugs, and
d) exposure to pesticides and organic solvents.

NHL seems to be non-hereditary--almost completely caused by environmental
factors, although I have *heard*, can't confirm, that most people who get
NHL are fair skinned with blue/grey eyes. That certainly describes my son.
But yes, people of any colour can get NHL.

It is bizarre that both your sister and your mother got NHL. It seems
awfully coincidental. I would look for common environmental factors. I found
an article which may link NHL to a local water supply:
HoustonChronicle.com -- http://www.HoustonChronicle.com | Section: Health &
Medicine April 7, 2004, Doctor paying the price for school Naval base water,
cancer tie possible By LISE OLSEN
Houston Chronicle RESOURCES
"water from the wells that ringed the base's motor pool contained
trichloroethylene, or TCE, a solvent used to degrease engine parts".
The whole article is in the document I sent you Barrie.

But Barrie if you are looking for tools to diagnose this disease, I would
read the links that J sent you plus the one I recommended
http://www.nhlcyberfamily.org. from what I've read, only a biopsy and
related blood work can really be used to diagnose NHL.

Best of luck!!

Karen

> > Sorry, further to the above my mother died of it and I wonder if there is
> > any test they can carry out to aid in the diagnosis of NHL.
[quoted text clipped - 5 lines]
> I've seen mention of hair dyes http://tinyurl.com/2tzcm American Cancer Society
> website.
Karen Lynn - 31 May 2004 12:58 GMT
Barrie, my private email to you with the attachment bounced. Can you accept
attachments? Let me know and I'll re-send it if you like.

Karen
J - 31 May 2004 01:40 GMT
> My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
> for the second time in 3 years and any information on web sites, treatment
[quoted text clipped - 3 lines]
>
> Many thanks

Hi Barrie, welcome to alt.support.cancer.
I'm sorry to hear that your sister's lymphoma has recurred.

this website says
http://cancer.uchc.edu/patients_families/treatment_types/lymphoma/nonhodgkins.html
(there's some sections at the bottom there also that might be of interest -
they talk about aggressive, agressive that comes back as indolent and vice
versa - it's very confusing unless one has the person's exact information from
the doctor).
"The treatment options and prognosis (chance of recovery) depend on the stage
of the cancer, the number of places outside of the lymph nodes to which the
cancer has spread, the type of lymphoma, the size of the tumor, and the
patient's age and general health."

I would expect that to be even more true if she's had previous chemo and
depending on how well she is now (Karnofsky) and her age.
The bone marrow /stem cell seems to be a tough process to go through.    A
lady I know was approx mid 40's and had a really rough time, probably in
hospital for at least two months, then in/out of hospital for more months.
She has CNS lymphoma and as best I can tell did not get rid of all the
tumours.  She had not had chemo before, so these may all be factors that your
sister will be facing.

Somehow I think the "time to relapse" may be a predictive factor also.
Perhaps when Steph comes around he can enlighten. If not, perhaps there are
questions to be asked of her doctor(s)?

What is her age and how is she? And when does this treatment start?

We've certainly inundated you with lots of reading.  The more I read about
blood cancers, the less I remember.

I had saved some relapse/prognosis from PubMed
I'll post them, you can decide if helpful or if you can use any of them to
discuss with her doctors.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1
383435&dopt=Abstract


J Clin Oncol. 1992 Oct;10(10):1615-23.  Related Articles, Links
Bone marrow transplantation prolongs survival after relapse in
aggressive-lymphoma patients treated with the LNH-84 regimen

http://www.int-med.uiowa.edu/clinical/BoneMarrow/HealthPro/Protocols/Lymphoma4.htm

Patients with aggressive non-Hodgkin’s lymphoma in relapses

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9
779700&dopt=Abstract


J Clin Oncol. 1998 Oct;16(10):3264-9.
Time to relapse has prognostic value in patients with aggressive lymphoma
enrolled onto the Parma trial.

Keep in touch.
Best,
J
spam2death - 31 May 2004 02:00 GMT
About 90% of NHLs are B cell lymphomas and the remaining are T cell variety. The info
and treatments for various lymphomas varies greatly. There are about a hundred
different lymphoma types, not counting subtypes. Unless you know exactly what the
exact diagnosis of the NHL happens to be, much of the general lymphoma info you might
read might not apply to your situation and could be confusing or misleading.

http://lymphomainfo.net/lymphoma.html

There are several listserv groups at www.acor.org  that deal specifically with BMT
and stem cell transplants.

--
"Dissent is the highest form of patriotism"   Thomas Jefferson

> My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
> for the second time in 3 years and any information on web sites, treatment
[quoted text clipped - 3 lines]
>
> Many thanks
LarryM - 31 May 2004 03:57 GMT
>My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
>for the second time in 3 years and any information on web sites, treatment

Barrie - that really sucks that she's got a 2nd NHL diagnosis.

>and prognosis would be appreciated. She is going into hospital for Bone
>Marrow & stem cell Transplant treatment but we know so little about the
>disease and want to become more knowledgeable about its causes & effects.

In brief, from what I've read, NHL is typically triggered by
environmental factors, such as pesticides and similar.  I've read also
that there may be a herditary disposition to NHL, but that seems to be
even more of an unknown.

I don't have a good list of sources for you on the subject.  I used
Google and my oncologist for the most part.

www.lymphomation.org is a general lymphoma resource you may want to
read up on.

FYI - I'm a stage II NHL survivor myself - and a rookie at that.

You may not know, but what was your sisters diagnosis the first time
around and what was the treatment?

After having a small tumor removed, I was left with one hot spot,
which was treated with chemo using a regimen aka CHOP and an
immunotheraphy drug called Rituxan.  Since my NHL was localized in one
cluster, I got treated with radiation to that area.

I don't envy what your sister will have to go through with the
transplant.  I read enough to realize how that can make for some tough
times.

Tell her I said "to be strong and to face it head on."  Geeez, I know
it will be hard, however you tell her to keep her spirits up.  If
she's feeling down, tell her to get mad at her lymphoma - yell and
scream and tell it to get the hell out of her!  Vent that anger!
Scream and yell and cry and then laugh!  Tell her I said to "give it
the fight it deserves and send it away!"

I'm wishing her the best in a full recovery this time around!  

Sorry to ramble about, as you'd asked for medical info, but hey, that
happens around here sometimes!  ;-)

Take care and keep us posted,

Larry

PS - Since we're talking about this in public, I'd like to say
something in relation to this topic.  For anyone reading this - if you
know someone who's pregnant, did you know that they can donate the
umbilical cord for harvesting of stem cells, the very thing that might
one day save the lives of people like Barrie's sister?!  It's sooooo
easy, especially if they're at a participating hospital, and it's free
too.
http://www.marrow.org/HELP/donate_cord_blood.html
--
"Even as a survivor I'm still fighting cancer!"
Larry @ www.gotCancer.org
Barrie - 31 May 2004 17:21 GMT
Many thanks to all that have replied, this is a difficult time for my wife &
I and its nice to know we are not alone.

Barrie

> >My sister has just been diagnosed with 'aggressive non Hodgkins Lymphoma'
> >for the second time in 3 years and any information on web sites, treatment
[quoted text clipped - 57 lines]
> "Even as a survivor I'm still fighting cancer!"
> Larry @ www.gotCancer.org
 
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