Plasmacytoma/Langahans Hystiocytosis X

I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
destroyed the inside of my femur for about 4.5 inches. In November 2004 I
snapped my weak femur and had a bar fitted inside my femur.
My Haematologist says that my Plasmacytoma was caused by a Para-protein in my
blood. I have had Radiotherapy and Steroid Therapy. At this time the Para-
Protein level is below zero and I am told that I am in remission and have
been since 2006.
My question is, what is next for me, will the Para-protein levels rise and if
they do what can I except to have, a new Plasmaycytoma or something worse?
In regard to the Langahans Hystiocytosis or Hystiocytosis X, this is in the
trunk of my body. Nothing has been done to this, as no-one including my
Haematologist know what to do about it. They have told me that there is no
change in it that they can see since it was discovered. Does anyone know what
can happen to it or me in the future as regard to eithyer or both of the
above?
I am a 39 year old Male.

PaulRack wrote:

> I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
> destroyed the inside of my femur for about 4.5 inches. In November 2004 I
> snapped my weak femur and had a bar fitted inside my femur.
> My Haematologist says that my Plasmacytoma was caused by a Para-protein in my
> blood. I have had Radiotherapy and Steroid Therapy. At this time the Para-
> Protein level is below zero and I am told that I am in remission and have
> been since 2006.
> My question is, what is next for me, will the Para-protein levels rise and if
> they do what can I except to have, a new Plasmaycytoma or something worse?
> In regard to the Langahans Hystiocytosis or Hystiocytosis X, this is in the
> trunk of my body. Nothing has been done to this, as no-one including my
> Haematologist know what to do about it. They have told me that there is no
> change in it that they can see since it was discovered. Does anyone know what
> can happen to it or me in the future as regard to eithyer or both of the
> above?
> I am a 39 year old Male.

Hi Paul,

The bc cancer agency seems to steer people to a medical oncologist in the
Lymphoma Tumour group
<
http://www.bccancer.bc.ca/HPI/Cancer...Conditions.htm
>
<
http://www.bccancer.bc.ca/HPI/Cancer...lDisorders.htm
>

Are you from UK? If so, you might find contacts here ?
http://www.cafamily.org.uk/Direct/h42.html
If it's not that country or no luck there, please come back here. We'll try to
connect you to others.
Best,
J

Thanks for the reply. I am from the UK and I will look at the sites you
suggested again.

Paul

J wrote:
>> I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
>> destroyed the inside of my femur for about 4.5 inches. In November 2004 I
>[quoted text clipped - 12 lines]
>> above?
>> I am a 39 year old Male.
>
>Hi Paul,
>
>The bc cancer agency seems to steer people to a medical oncologist in the
>Lymphoma Tumour group
><
>http://www.bccancer.bc.ca/HPI/Cancer...Conditions.htm
>
><
>http://www.bccancer.bc.ca/HPI/Cancer...lDisorders.htm
>
>Are you from UK? If so, you might find contacts here ?
>http://www.cafamily.org.uk/Direct/h42.html
>If it's not that country or no luck there, please come back here. We'll try to
>connect you to others.
>Best,
>J

--
Message posted via MedKB.com
http://www.medkb.com/Uwe/Forums.aspx...board/200712/1

J, all of the sites you listed are for the Langahans, do you know any for my
Plasmacytoma.

Thanks again,

Paul

J wrote:
>> I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
>> destroyed the inside of my femur for about 4.5 inches. In November 2004 I
>[quoted text clipped - 12 lines]
>> above?
>> I am a 39 year old Male.
>
>Hi Paul,
>
>The bc cancer agency seems to steer people to a medical oncologist in the
>Lymphoma Tumour group
><
>http://www.bccancer.bc.ca/HPI/Cancer...Conditions.htm
>
><
>http://www.bccancer.bc.ca/HPI/Cancer...lDisorders.htm
>
>Are you from UK? If so, you might find contacts here ?
>http://www.cafamily.org.uk/Direct/h42.html
>If it's not that country or no luck there, please come back here. We'll try to
>connect you to others.
>Best,
>J

--
Message posted via http://www.medkb.com

PaulRack wrote:

> I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
> destroyed the inside of my femur for about 4.5 inches. In November 2004 I
> snapped my weak femur and had a bar fitted inside my femur.
> My Haematologist says that my Plasmacytoma was caused by a Para-protein in my
> blood. I have had Radiotherapy and Steroid Therapy. At this time the Para-
> Protein level is below zero and I am told that I am in remission and have
> been since 2006.
> My question is, what is next for me, will the Para-protein levels rise and if
> they do what can I except to have, a new Plasmaycytoma or something worse?
> In regard to the Langahans Hystiocytosis or Hystiocytosis X, this is in the
> trunk of my body. Nothing has been done to this, as no-one including my
> Haematologist know what to do about it. They have told me that there is no
> change in it that they can see since it was discovered. Does anyone know what
> can happen to it or me in the future as regard to eithyer or both of the
> above?
> I am a 39 year old Male.

Let's see if Steph has an answer for you.
J

"PaulRack via MedKB.com" wrote:

> J, all of the sites you listed are for the Langahans, do you know any for my
> Plasmacytoma.
>
> Thanks again,

(see below, Paul)

> Paul
>
> J wrote:
> >> I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
> >> destroyed the inside of my femur for about 4.5 inches. In November 2004 I
> >[quoted text clipped - 12 lines]
> >> above?
> >> I am a 39 year old Male.
> >
> >Hi Paul,
> >
> >The bc cancer agency seems to steer people to a medical oncologist in the
> >Lymphoma Tumour group
> ><
> >http://www.bccancer.bc.ca/HPI/Cancer...Conditions.htm
> >
> ><
> >http://www.bccancer.bc.ca/HPI/Cancer...lDisorders.htm
> >
> >Are you from UK? If so, you might find contacts here ?
> >http://www.cafamily.org.uk/Direct/h42.html
> >If it's not that country or no luck there, please come back here. We'll try to
> >connect you to others.
> >Best,
> >J

Plasmacytoma is covered in section 3 of the 2nd webpage (above).
Here's more:
http://www.myelomaonline.org.uk/NetC...=459&srcid=459

http://www.cancerhelp.org.uk/help/de....asp?page=4755
http://www.cancerbackup.org.uk/Healt...ancers/Myeloma
http://www.canceradvice.co.uk/myelom...support-groups
http://www.canceradvice.co.uk/myelom...acytoma/causes
I hope this helps.
j

J wrote:

> PaulRack wrote:
>
> > I was diagnosed with a plasmacytoma in my left femur in October 2004. It has
> > destroyed the inside of my femur for about 4.5 inches. In November 2004 I
> > snapped my weak femur and had a bar fitted inside my femur.
> > My Haematologist says that my Plasmacytoma was caused by a Para-protein in my
> > blood. I have had Radiotherapy and Steroid Therapy. At this time the Para-
> > Protein level is below zero and I am told that I am in remission and have
> > been since 2006.
> > My question is, what is next for me, will the Para-protein levels rise and if
> > they do what can I except to have, a new Plasmaycytoma or something worse?
> > In regard to the Langahans Hystiocytosis or Hystiocytosis X, this is in the
> > trunk of my body. Nothing has been done to this, as no-one including my
> > Haematologist know what to do about it. They have told me that there is no
> > change in it that they can see since it was discovered. Does anyone know what
> > can happen to it or me in the future as regard to eithyer or both of the
> > above?
> > I am a 39 year old Male.
>
> Let's see if Steph has an answer for you.
> J

Paul,
I forgot to tell you that John was here in October. His 80 year old mother had a
plasmacytoma .
Steph told him the following.
"About 50% of patients with plasmacytoma will develop myeloma eventually.
The diagnosis is not based on whether the plasmacytoma disappears or not
- it's the same disease as myeloma, only localised.
The diagnosis of MM requires multiple lytic lesions in bones, or a positive bone
marrow.[end Steph quote]
J

"PaulRack via MedKB.com" <u39605@uwe> wrote in message
news:7c3ad735cbff8@uwe...
> J, all of the sites you listed are for the Langahans, do you know any for
> my
> Plasmacytoma.
>
> Thanks again,
>
> Paul
>


See section 3 here
http://www.bccancer.bc.ca/HPI/Cancer...lDisorders.htm

"PaulRack via MedKB.com" <u39605@uwe> wrote in message
news:7c3ad735cbff8@uwe...
> J, all of the sites you listed are for the Langahans, do you know any for
> my
> Plasmacytoma.
>
> Thanks again,
>
> Paul
>
The correct management of solitary plasmacytoma is:
1)Surgical stabilisation if fracture is a risk
2) Full staging to determine if it is solitary plasmacytoma or multiple
myeloma
3) Radiotherapy alone if it's a solitary plasmacytoma. No chemo. But 50% of
patients with sp of bone eventually develop multiple myeloma.