Hello Geoff,
I'm terribly sorry to hear of your wife's diagnosis.

After Bob's prompting, I was thinking about finding you clinical trial
results on each.
However, since you wish to compare notes with patients, thier caregivers or
loved ones, the best place for the highest numbers (of responders) on both
informations is probably on the private ACOR lists.
There's 2 for Sarcoma http://www.acor.org/mlists/mlists.html#s
Many of the subscribers may be on both lists.
If you click on the high-lighted group name and follow the instructions,
you'll be emailed as to how to proceed.
You can unsubscribe at any time, if that becomes your wish.
Many here also subscribe at ACOR

There are other UK'ers here as well, along with Steph (Oncologist, Radiation
Oncologist and more), who trained in UK, but is currently practising in BC,
Canada.

I was hoping that you could consult with both the oncologist and a thoracic
surgeon in one meeting.
And take a tape recorder.  It's difficult to take notes, while following
along a conversation and you may want a followup (meeting) for further
questions / clarifications.  Me - trying to be time-efficient, but may not
be possible if the experts work out of different hospitals or due to each's
schedules.  Or maybe the Friday Doctor will try to arrange it for you.

Doxorubicin ?
Both are listed here for the common and less common side effects
http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Ifosfamide

There's also a number at the top (of the web page) if ever you wish to speak
to cancer specialist nurse.
Try them just for a test.  I'm not sure how helpful they might be.  I think
some UK'ers have found them helpful.

We have something similar in Canada, for general health problems, but if it
(the problem's) too complicated or not in their database, all they do is
tell us to get to A&E ASAP or see doctor in the morning, so not so helpful,
I find.

Please stay in touch and let us know how things go with you and your wife.
More questions? Other thoughts. Post away.
I'll be here reading and caring. Others too.
Best,
J

We are now clutching at straws.
sarcoma <<

They have shown in man there exists what is called age related iron
accumulation.
Iron restriction is being used to fight disease.
There are many iron chelators found in plant foods.
Polyphenols .. flavonoids .. phytate and others.

Regular Article
Journal of Investigative Dermatology (2000) 115, 893–900; doi:10.1046/
j.1523-1747.2000.00119.x

Iron Chelators Inhibit the Growth and Induce the Apoptosis of Kaposi's
Sarcoma Cells and of their Putative Endothelial Precursors
Thierry Simonart, Chantal Degraef‡, Graciela Andrei§, Roger
Mosselmans‡, Philippe Hermans¶, Jean-Paul Van Vooren*, Jean-Christophe
Noel†, Johan R Boelaert**, Robert Snoeck§ and Michel Heenen

Department of Dermatology, Erasme University Hospital, Brussels,
Belgium
*Department of Internal Medicine, Erasme University Hospital,
Brussels, Belgium
†Department of Pathology, Erasme University Hospital, Brussels,
Belgium
‡Laboratory of Cytology and Experimental Cancerology, IRIBHN,
Brussels, Belgium
§Rega Institute for Medical Research, Leuven, Belgium
¶Department of Infectious Diseases, CHU St Pierre, Brussels, Belgium
**Department of Renal and Infectious Diseases, Algemeen Ziekenhuis
Sint Jan, Bruges, Belgium
Correspondence: Dr Thierry Simonart, Department of Dermatology, Erasme
University Hospital, Route de Lennik 808, B-1070 Brussels, Belgium.
Email: simonart@erasme.ulb.ac.be

Received 31 March 2000; Revised 28 June 2000; Accepted 17 July 2000.

Top of pageAbstract
Iron is suspected to be involved in the induction and/or progression
of various human tumors. More particularly, iron may be involved in
the pathogenesis of Kaposi's sarcoma, a tumor of probable vascular
origin. This study was designed to investigate the effect of iron
deprivation on Kaposi's sarcoma. The effects of iron chelators and
iron deprivation associated with serum withdrawal were investigated on
Kaposi's sarcoma-derived spindle cells, on a transformed Kaposi's
sarcoma cell line (Kaposi's sarcoma Y-1) and on endothelial cells,
which are the probable progenitors of Kaposi's sarcoma cells.
Desferrioxamine and deferiprone, two chemically unrelated iron
chelators, induced a time- and concentration-dependent inhibition of
endothelial and Kaposi's sarcoma cell growth. The inhibition of cell
growth was associated with a decrease in Ki-67 and in both stable and
total proliferating cell nuclear antigen expression. Inhibition of the
progression through the G1-phase of the cell cycle was further
evidenced by decreased expression of cyclin D1 and of p34 cyclin-
dependent kinase 4. Terminal deoxynucleotidyl transferase-mediated
desoxyuridinetriphosphate nick end labeling assay, flow cytometry with
annexin-V-fluorescein and morphologic analysis indicated that iron
chelation also induced a time- and concentration-dependent apoptosis.
This apoptotic effect was prevented by the addition of exogenous iron.
Induction of iron deprivation in the culture medium by serum
withdrawal led to similar cell cycle effects, which, however, could
only be partly reverted by the addition of exogenous iron. In
conclusion, these results show that iron deprivation inhibits the
growth and induces the apoptosis of Kaposi's sarcoma cells and of
their putative endothelial precursors. This suggests that iron
chelators may represent a potential therapeutic approach for the
treatment of Kaposi's sarcoma.

Keywords: cyclin D1, deferiprone, desferrioxamine, p34 cyclin-
dependent kinase 4

Abbreviations: KS, Kaposi's sarcoma; DFO, desferrioxamine; p34cdk4,
p34 cyclin-dependent kinase 4; PCNA, proliferating cell nuclear
antigen; HDMEC, human dermal microvascular endothelial cells

------------------------------

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://tinyurl.com/2r2nkh

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk

Geoff,
Your doctors' advice is correct - this situation is not curable.
You need to ask what is possible to achieve and aim for that. Grasping at
straws is counterproductive.
Doxorubicin and cyclophospamide are both "active" in sarcoma, but they
should not be used simply because of that, but because there might be some
concrete benefit achievable. J keeps a posting of mine somewhere which is
called "questions to ask". Read that

sarcoma <<

"Iron exposure"

Cancer Lett. 2006 Nov 28;244(1):1-7. Epub 2006 Mar 20.  Links
Role of environmental factors in the pathogenesis of classic and
African-endemic Kaposi sarcoma.Simonart T.
Department of Dermatology, Erasme University Hospital, Route de
Lennik
808, B-1070 Brussels, Belgium. tsimo...@ulb.ac.be

Kaposi sarcoma (KS) is a mesenchymal tumour associated with human
herpesvirus-8 (HHV-8) infection. However, the incidence of HHV-8
infection is far higher than the prevalence of KS, suggesting that
viral infection per se is not sufficient for the development of
aggressive phenotype and that one or more additional cofactors are
required. The great geographical variation in African-endemic and
classic KS incidence points to a role for environmental factors in
the
etiology of Kaposi sarcoma. However, there are few unequivocably
established environmental factors involved in KS pathogenesis. This
review focuses on the environmental factors thought to be associated
with KS, more particularly iron exposure and facilitation of
transmission of HHV-8 infection by contact with blood-sucking
arthropods.

PMID: 16542773 [PubMed - in process]

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://tinyurl.com/2r2nkh

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk

Titre du document / Document title
Iron chelators inhibit the growth and induce the apoptosis of Kaposi's
sarcoma cells and of their putative endothelial precursors
Auteur(s) / Author(s)
SIMONART Thierry (1) ; DEGRAEF Chantal (2) ; ANDREI Graciela (3) ;
MOSSELMANS Roger (2) ; HERMANS Philippe (4) ; VAN VOOREN Jean-Paul
(5) ; NOEL Jean-Christophe (6) ; BOELAERT Johan R. (7) ; SNOECK Robert
(3) ; HEENEN Michel (1) ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
(1) Department of Dermatology, Erasme University Hospital, Brussels,
BELGIQUE
(2) Laboratory of Cytology and Experimental Cancerology, IRIBHN,
Brussels, BELGIQUE
(3) Rega Institute for Medical Research, Leuven, BELGIQUE
(4) Department of Infectious Diseases, CHU St Pierre, Brussels,
BELGIQUE
(5) Department of Internal Medicine, Erasme University Hospital,
Brussels, BELGIQUE
(6) Department of Pathology, Erasme University Hospital, Brussels,
BELGIQUE
(7) Department of Renal and Infectious Diseases, Algemeen Ziekenhuis
Sint Jan, Bruges, BELGIQUE

Résumé / Abstract
Iron is suspected to be involved in the induction and/or progression
of various human tumors. More particularly, iron may be involved in
the pathogenesis of Kaposi's sarcoma, a tumor of probable vascular
origin. This study was designed to investigate the effect of iron
deprivation on Kaposi's sarcoma. The effects of iron chelators and
iron deprivation associated with serum withdrawal were investigated on
Kaposi's sarcoma-derived spindle cells, on a transformed Kaposi's
sarcoma cell line (Kaposi's sarcoma Y-1) and on endothelial cells,
which are the probable progenitors of Kaposi's sarcoma cells.
Desferrioxamine and deferiprone, two chemically unrelated iron
chelators, induced a time- and concentration-dependent inhibition of
endothelial and Kaposi's sarcoma cell growth. The inhibition of cell
growth was associated with a decrease in Ki-67 and in both stable and
total proliferating cell nuclear antigen expression. Inhibition of the
progression through the G1-phase of the cell cycle was further
evidenced by decreased expression of cyclin D1 and of p34 cyclin-
dependent kinase 4. Terminal deoxynucleotidyl transferase-mediated
desoxyuridine-triphosphate nick end labeling assay, flow cytometry
with annexin-V-fluorescein and morphologic analysis indicated that
iron chelation also induced a time- and concentration-dependent
apoptosis. This apoptotic effect was prevented by the addition of
exogenous iron. Induction of iron deprivation in the culture medium by
serum withdrawal led to similar cell cycle effects, which, however,
could only be partly reverted by the addition of exogenous iron. In
conclusion, these results show that iron deprivation inhibits the
growth and induces the apoptosis of Kaposi's sarcoma cells and of
their putative endothelial precursors. This suggests that iron
chelators may represent a potential therapeutic approach for the
treatment of Kaposi's sarcoma.
Revue / Journal Title
Journal of investigative dermatology   ISSN 0022-202X   CODEN JIDEAE
Source / Source
Congrès
Society for Cutaneous Ultrastructure Research and Analytic Morphology
and Experimental Dermatooncology Group of the ADF. Joint Meeting,
Bochum , ALLEMAGNE (04/05/2000)
2000, vol. 115, no 5, pp. 919-930 (46 ref.), pp. 893-900
Langue / Language
Anglais

Editeur / Publisher
Nature Publishing, Danvers, MA, ETATS-UNIS (1938) (Revue)

Mots-clés anglais / English Keywords
Kaposi sarcoma ; Iron ; Chelating agent ; Apoptosis ; Endothelial
cell ; Cell death ; Biological activity ; Human ; Cell culture ;
Deferiprone ; Skin disease ; Malignant tumor ;
Mots-clés français / French Keywords
Kaposi maladie ; Fer ; Chélateur ; Apoptose ; Cellule endothéliale ;
Mort cellulaire ; Activité biologique ; Homme ; Culture cellulaire ;
Défériprone ; Desferrioxamine ; Peau pathologie ; Tumeur maligne ;
Mots-clés espagnols / Spanish Keywords
Kaposi enfermedad ; Hierro ; Quelante ; Apoptosis ; Célula
endotelial ; Muerte celular ; Actividad biológica ; Hombre ; Cultivo
celular ; Deferiprona ; Piel patología ; Tumor maligno ;
Localisation / Location
INIST-CNRS, Cote INIST : 3194, 35400009348567.0170
----------------------------
Titre du document / Document title
Iron as a potential co-factor in the pathogenesis of Kaposi's sarcoma?
Auteur(s) / Author(s)
SIMONART T. (1) ; NOEL J.-C. (2) ; ANDREI G. (3) ; PARENT D. (1) ; VAN
VOOREN J.-P. (4) ; HERMANS P. (5) ; LUNARDI-YSKANDAR Y. (6) ; LAMBERT
C. (7) ; DIEYE T. (4) ; FARBER C.-M. (4) ; LIESNARD C. (8) ; SNOECK R.
(3) ; HEENEN M. (1) ; BOELAERT J. R. (9) ;
Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
(1) Department of Dermatology, Hôpital Universitaire Erasme, Brussels,
BELGIQUE
(2) Department of Pathology, Hôpital Universitaire Erasme, Brussels,
BELGIQUE
(3) Rega Institute for Medical Research, Katholieke Universiteit,
Louvain, BELGIQUE
(4) Department of Internal Medicine, Hôpital Universitaire Erasme,
Brussels, BELGIQUE
(5) Department of Infectious Diseases, Hôpital Saint-Pierre, Brussels,
BELGIQUE
(6) Institute of Human Virology, Baltimore, MD, ETATS-UNIS
(7) Laboratory of Connective Tissue Biology, CHU Sart Tilman, Liège,
BELGIQUE
(8) Department of Virology, Hôpital Universitaire Erasme, Brussels,
BELGIQUE
(9) Department of Renal and Infectious Diseases, Algemeen Ziekenhuis
Sint Jan, Bruges, BELGIQUE

Résumé / Abstract
The role of iron in the pathogenesis of several tumours is being
increasingly investigated. In particular, its involvement in the
pathogenesis of Kaposi's sarcoma (KS) is suggested by the distribution
of the endemic form of KS corresponding to continental rifts and
associated iron-oxide-rich volcanic clays. We investigated in vitro to
what extent iron supplementation or withdrawal could affect the growth
of KS-derived cells, by analysing the effects of adding iron salts
(iron chloride and ferric nitrilotriacetate) and/or reducing iron by
iron chelators (desferrioxamine) on KS-derived cell cultures. The
addition of iron salts strongly stimulated the growth of KS cells, as
reflected by increase in thymidine incorporation and cell number.
Conversely, desferrioxamine and deferiprone inhibited cell growth. The
inhibitory effect of iron chelation was more pronounced on rapidly
dividing basic fibroblast-growth-factor-stimulated cells. These
results may point to a novel therapeutic approach to KS.
Revue / Journal Title
International journal of cancer   ISSN 0020-7136   CODEN IJCNAW
Source / Source
1998, vol. 78, no6, pp. 720-726 (39 ref.)
Langue / Language
Anglais

Editeur / Publisher
Wiley-Liss, New York, NY, ETATS-UNIS (1966) (Revue)

Mots-clés anglais / English Keywords
Kaposi sarcoma ; Iron ; Inorganic element ; Cofactor ; Pathogenesis ;
Human ; Skin disease ; Malignant tumor ;
Mots-clés français / French Keywords
Kaposi maladie ; Fer ; Elément minéral ; Cofacteur ; Pathogénie ;
Homme ; Peau pathologie ; Tumeur maligne ;
Mots-clés espagnols / Spanish Keywords
Kaposi enfermedad ; Hierro ; Elemento inorgánico ; Cofactor ;
Patogenia ; Hombre ; Piel patología ; Tumor maligno ;
Localisation / Location
INIST-CNRS, Cote INIST : 13027, 35400007184253.0090

----------------------------
Vol. 204, No. 4, 2002
--------------------------------------------------------------------------------

Free Abstract     Article (Fulltext)     Article (PDF 102 KB)

--------------------------------------------------------------------------------

Case Report

Enhancement of Classic Kaposi's Sarcoma Growth after Intralesional
Injections of Desferrioxamine
T. Simonarta, J.R. Boelaertc, J.P. Van Voorenb

Departments of
aDermatology and
bInternal Medicine, Erasme University Hospital, Brussels, and
cUnit of Renal and Infectious Diseases, Algemeen Ziekenhuis St Jan,
Bruges, Belgium

Address of Corresponding Author

Dermatology 2002;204:290-292 (DOI: 10.1159/000063361)

--------------------------------------------------------------------------------

 Key Words

Desferrioxamine
Iron
Kaposi's sarcoma

--------------------------------------------------------------------------------

 Abstract

We have previously shown that iron may be involved in the pathogenesis
of Kaposi's sarcoma (KS) and that the iron chelator desferrioxamine
(DFO) inhibits the growth and induces the apoptosis of KS cells in
vitro. We treated an 85-year-old man with classic KS with 5 weekly
intralesional injections of DFO and observed the opposite effect in
vivo. The DFO-treated lesion was characterised by the development of
numerous KS papules within the drug diffusion area, whereas no change
was noted in untreated or control saline-treated lesions. This
suggests that intralesional iron chelators are not indicated in
patients with KS.

Copyright © 2002 S. Karger AG, Basel

Author Contacts

Thierry Simonart, MD
Department of Dermatology, Erasme University Hospital
808 Route de Lennik
B-1070 Brussels (Belgium)
Tel. +32 2 555 46 12, Fax +32 2 555 49 69, E-Mail tsimonar@ulb.ac.be

--------------------------------------------------------------------------------

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://tinyurl.com/2r2nkh

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk

sarcoma <<

"Iron staining of dermal tissue was confirmed in all KS cases"

http://www.medscape.com/medline/abstract/17210517?src=emed_ckb_ref_0

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://tinyurl.com/2r2nkh

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk

sarcoma <<

http://www.emedicine.com/oph/topic481.htm

Iron chelators

Simonart et al currently is investigating the role of regulating iron
concentration in tumor cells. They demonstrated that the addition of
iron salts strongly stimulates the growth of Kaposi sarcoma and that
the use of iron chelators inhibits growth. Their findings are
disclosing new therapeutics in tumor management with iron-chelating
agents.
Hermans et al speculate that the lower risk for developing Kaposi
sarcoma in females may be because women have lower iron stores. He
also believes that patients with renal transplants are more
susceptible to Kaposi sarcoma because they tend to have higher iron
loads from repeated blood transfusions.------------------------------

Who loves ya.
Tom

Jesus Was A Vegetarian!
http://tinyurl.com/2r2nkh

Man Is A Herbivore!
http://tinyurl.com/a3cc3

DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk

                             [big snip]|

Hello Geoff,
   I am very sorry to read this sad news, but please do not despair.
The doctor said "not too many years";he could have said "not too many
weeks".
Keep on researching those options, you have the time.And be of
good heart both of you; new discoveries come up all the time, in fact
your researches may turn up something already current.

You ask "We have been told that chemo does NOT cure,
it merely slows down."

That is true to a certain extent, but in medical circles "cure" is
understood to mean  5-year survival,so using that definition
chemotherapy does sometimes "cure".In some other cases
chemotherapy is too damaging and has to be discontinued.
My own humble opinion is that cancer is not due to a chemotherapy
deficiency any more that a headache is due to an aspirin deficiency,
so we should look elswhere to help the therapy if we are to have
a permanent complete recovery.

The internet is an excellent source of knowledge with first class
search engines to help us.It is not the only one however; our local
public library can provide the written word to study and will fetch
books from other areas if they do not keep the one you seek.
Amazon again sells many books on our subject cheaply, and I have
made and continue to make good use of it. Make them your sources
too.

   Your Love for you wife shines through your message: I can
understand it because I am married for 57 years.

I do not log on to this newsgroup very often and only write infrequently.
If you wish to reply and would prefer not to go public this is my genuine
email address.
I won't write again on this thread.

With best wishes to you both,

Old Bill.

       All truth passes through three stages.
        First, it is ridiculed.
        Second, it is violently opposed.
       Third, it is accepted as being self-evident.
        Schopenhauer