|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Fri Apr 07, 2006 - 12:21 PM
Please let us know if you'd like to get in touch with other families and friends of people with a rarer cancer.
Administrator |
|
By:
cin66
Postings:
4
From:
n/a
|
Posted:
Fri Jul 07, 2006 - 12:46 AM
Hi,
I would like to contact someone who has the same cancer as me. I was diagnosed with cancer of the nasal cavity & sinuses in November 2005
|
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Fri Jul 07, 2006 - 09:48 AM
Hi Cin,
I think it would be a good idea to repeat your post in the 'Networking between patients' section of the Message Board - will be seen by even more people that way. I've also added 'Cancer of nasal cavity and sinuses' to list of cancers in News page - Building support networks for patients.
Best wishes,
Stella
Administrator |
|
By:
gill
Postings:
4
From:
n/a
|
Posted:
Sat Feb 03, 2007 - 12:04 PM
my son has clear cell sarcoma. he is 10. i know it would really help to talk things through. our consultant has never treated it before, and has told us if it comes back that they can't do anything else.
|
|
By:
Shirley
Postings:
27
From:
Cranfield, Beds
|
Posted:
Fri Feb 23, 2007 - 05:15 PM
Gill. You say that your consultant admits he has never treated this condition before. Well, if that is the case, he is NOT a sarcoma specialist and you really need to find one for your little boy. If you read the National Institute of Clinical Excellence guidlelines for sarcoma treatment you will see this stated quite clearly. Sarcoma specialists treat at least 100 patients a year. Please feel free to email me privately. the.collings@btinternet.com and/or check the website www.sarcomauk.org
Shirley Collings
Leiomyosarcoma 2003
Recurrence and lung mets 2005
|
|
By:
gill
Postings:
4
From:
n/a
|
Posted:
Thu Mar 22, 2007 - 03:14 PM
hi Shirley
is that the case for children as well?
i mentioned it to the macmillan nurse and she just said the guidelines for children where different.
we've made another appointment to see his consultant on the 27th so i could really do with some infomation.
thanks. gill
|
|
By:
Shirley
Postings:
27
From:
Cranfield, Beds
|
Posted:
Thu Apr 05, 2007 - 03:17 PM
Gill, sorry I couldn't get back to you before your so's appointment, I've been off line for a while. I've found the text below in a NICE guidance document "Improving outcomes with children and young people with cancer" It does say bone sarcoma, but I would have thought it could apply to all sarcoma diagnoses in children. The guidelines are available for public access on the NICE website.
"All children and young people with suspected bone sarcoma should
be referred to a specialist bone sarcoma multidisciplinary team (MDT)
with access to age-appropriate facilities.
Pathological specimens, suspected of being sarcoma, should be
urgently reviewed for definitive diagnosis by a paediatric or specialist
sarcoma pathologist or a pathologist with a special interest in sarcoma."
Do email me privately if you want to. Or call Roger Wilson at Sarcoma UK, he's a very helpful man. There used to be the mother of a little boy on the Sarcoma UK email list, but she hasn't posted for quite a while.
Shirley
|
|
By:
carol
Postings:
8
From:
cardiff
|
Posted:
Tue Apr 17, 2007 - 12:24 PM
I would like to contact with someone who has had a GIST,
|
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Tue Apr 17, 2007 - 01:49 PM
Hi Carol,
If you go to http://www.gistsupport.co.uk/ and click on 'Help and Advice' in the left margin, you'll see the names of three GIST patients who would talk with you or put you in touch with other GIST patients.
Best wishes
Administrator |
|
By:
Sunnyday
Postings:
1
From:
Australia
|
Posted:
Fri Apr 27, 2007 - 01:22 AM
From administrator:
Please let us know if you'd like to get in touch with other families and friends of people with a rarer cancer.
Hi, My mum has been diagnosed with LMS-leiomyosarcoma and I am trying to get in contact with others. It is very early days. Reaching out in a hope that someone will reach back.
Forward Thanks Paula |
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Tue May 01, 2007 - 09:52 AM
Hallo Paula,
I'm sure we shall be able to help put you in contact with others. What part of your mum's body is affected e.g. uterus?
Best wishes,
Administrator |
|
By:
shirley
Postings:
27
From:
Cranfield, Beds
|
Posted:
Thu May 03, 2007 - 09:36 AM
Hello Paula
I am a leiomyosarcoma patient, diagnosed in 2003. Please feel free to email me: shirley.collings@bazzer.net
Also look at www.sarcomauk.org This website and organisation was set up in 1999 by Roger Wilson, a LMS patient himself.
Please get in touch, there other LMS patients out there. You and your mother are not alone with this.
Uterine Leioymosarcoma 2003
Lung mets 2005
Gem/docetaxel chemo 2005 (unsuccessful)
Stable disease at moment
Care at Addenbro |
|
By:
holiday
Postings:
1
From:
n/a
|
Posted:
Fri Aug 31, 2007 - 10:55 AM
Hello
Has anyone or know of anyone come through Rhabdomysarcoma? Our friend (member of daughter's roller hockey team) has been diagnosed.
Age 13, male. Would appreciate any survivor's stories right about now.
Thanks,
yours sincerely,
Catherine Berger Western Australia
|
|
By:
stuart
Postings:
6
From:
cwmbran
|
Posted:
Tue Sep 04, 2007 - 09:57 PM
From carol:
I would like to contact with someone who has had a GIST,
[/
blockquote]from stuart
hello carol im a fellow gister i have had gist for the last two years so if you feel like a chat i would be more than happy. I see your from cardiff i live in cwmbran and i attend velindre.
|
|
By:
stuart
Postings:
6
From:
cwmbran
|
Posted:
Tue Sep 04, 2007 - 10:00 PM
From carol:
I would like to contact with someone who has had a GIST,
[/
blockquote]from stuart
hello carol im a fellow gister i have had gist for the last two years so if you feel like a chat i would be more than happy. I see your from cardiff i live in cwmbran and i attend velindre.
|
|
By:
Trisha
Postings:
1
From:
Middx
|
Posted:
Sun Sep 09, 2007 - 04:26 PM
Hi - does anyone have or know someone who has PEcoma? I gather it's like Sarcoma but not quite. I was diagnosed with it in my pelvic area (broad ligament) offically in mid July but have had a haematoma resulting from the PEcoma since January this year. I'm under the Sarcoma team @ Royal Marsden Chelsea who have been wonderful. I've just finished my course of Radiotherapy and am waiting to find out how that went. I have come to terms with having cancer but I wish it was something a bit more run of the mill, because then I suppose I could read all about it, survival rates, options for treatment etc... The Royal Marsden have been really brilliant but I just wish I knew that they know more about it than me!!
|
|
By:
carol
Postings:
8
From:
cardiff
|
Posted:
Wed Sep 12, 2007 - 05:51 PM
hi stuart
i have so many questions as i have only ever met one other gist patient and that was when i was in hospital. Did you have yours removed and if so was it at the heath hospital?
|
|
By:
Lynn19
Postings:
1
From:
n/a
|
Posted:
Thu Jan 17, 2008 - 12:15 PM
Hi Trisha,
Hope you are recovering well!! I also have a friend who has PEcoma, which is a very rare cancer in my country. She had it near her ovary and went through chemotherapy but the tumour grew back after the treatment. Hence, she is unable to go through radiotherapy and recent CT scan indicates that it has invaded into her blood vessels. Really hope to seek more information on other possible treatment on PEcoma... Thank you so much...
From Trisha:
Hi - does anyone have or know someone who has PEcoma? I gather it's like Sarcoma but not quite. I was diagnosed with it in my pelvic area (broad ligament) offically in mid July but have had a haematoma resulting from the PEcoma since January this year. I'm under the Sarcoma team @ Royal Marsden Chelsea who have been wonderful. I've just finished my course of Radiotherapy and am waiting to find out how that went. I have come to terms with having cancer but I wish it was something a bit more run of the mill, because then I suppose I could read all about it, survival rates, options for treatment etc... The Royal Marsden have been really brilliant but I just wish I knew that they know more about it than me!!
|
|
By:
pennykai
Postings:
7
From:
n/a
|
Posted:
Fri Feb 22, 2008 - 11:23 PM
hi does anyone else have leiomyosarcoma cancerous fibroids would love to talk to anyone in the same situation
|
|
By:
shirley
Postings:
27
From:
Cranfield, Beds
|
Posted:
Sun Mar 09, 2008 - 11:28 AM
Hello
I am a uterine leiomyosarcoma (ULMS) patient, diagnosed in 2003 after a hysterectomy for fibroids. Please feel free to email me: shirley.collings@bazzer.net
Also look at www.sarcomauk.org This website and organisation was set up in 1999 by Roger Wilson, a Sarcoma patient himself.
Please get in touch, there other ULMS patients out there. You are not alone with this.
Shirley
|
|
By:
batham
Postings:
2
From:
cheshire
|
Posted:
Mon Mar 17, 2008 - 01:55 PM
message for Neety. i too have aggressive angiomyxoma and would like to make contact with you as it is so good to know someone out there with the same.
c.batham |
|
By:
michelle
Postings:
7
From:
n/a
|
Posted:
Sun Apr 13, 2008 - 02:38 PM
WESTERN AUSTRALIA
My Dad has just had a leiomyosacroma removed from his bowel. Is there anyone out there who knows of a support group or a doctor that has expertise in this are or anyone know of someone who has had same. It is very hard to find out information so far from gp and oncologist and we are really not sure what to expect for future or a diagnosis. Any help would be appreciated
|
|
By:
francis
Postings:
3
From:
Merseyside
|
Posted:
Sun Apr 20, 2008 - 06:03 PM
From administrator:
Please let us know if you'd like to get in touch with other families and friends of people with a rarer cancer.
My husband has Myxo fibro sarcoma.Soft tissue sarcoma and would like to hear from anyone with similar experience. he had the tumour removed from the back of his leg in February and he is having a six week course of radiotherapy.He feels very isolated as his condition is so rare. |
|
By:
francis
Postings:
3
From:
Merseyside
|
Posted:
Sun Apr 27, 2008 - 01:51 PM
From administrator:
Please let us know if you'd like to get in touch with other families and friends of people with a rarer cancer.
my husband has myxofybrosarcoma and we would like to contact other families with similar rare cancer |
|
By:
Marion
Postings:
2
From:
n/a
|
Posted:
Thu May 08, 2008 - 08:55 PM
I have Adenoid Cystic Carcinoma and would really like to talk to other people with the same problem.
|
|
By:
mona
Postings:
2
From:
Shropshire UK
|
Posted:
Thu Aug 14, 2008 - 04:06 PM
From batham:
message for Neety. i too have aggressive angiomyxoma and would like to make contact with you as it is so good to know someone out there with the same.
Hello Neety and batham. I too have aggressive angiomyxoma and am really keen to make contact with others with this condition. I look forward to hearing from you - we are few and far between in the UK - or anywhere in fact. mona |
|
By:
Patricia
Postings:
5
From:
England
|
Posted:
Mon Aug 18, 2008 - 05:01 PM
From pennykai:
hi does anyone else have leiomyosarcoma cancerous fibroids would love to talk to anyone in the same situation
Hi, I had a fibroid diagnosed leiomyosarcoma in 2005, see my story in 'patient stories'. Am still doing ok, and my 'beasties' are still staying put. How are you? Was yours removed fully without any spread? I have an MRI every 6 months, or 3 months if I have any other symptoms they think need checking sooner. Do you have regular check ups? Hope everything going ok with you. |
|
By:
pennykai
Postings:
7
From:
n/a
|
Posted:
Tue Aug 19, 2008 - 11:32 PM
From Patricia:
Hi, I had a fibroid diagnosed leiomyosarcoma in 2005, see my story in 'patient stories'. Am still doing ok, and my 'beasties' are still staying put. How are you? Was yours removed fully without any spread? I have an MRI every 6 months, or 3 months if I have any other symptoms they think need checking sooner. Do you have regular check ups? Hope everything going ok with you. |
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Thu Sep 11, 2008 - 01:35 PM
Dear Patricia,
I know you're having difficulty sending a new message to pennykai so by way of this post I am testing the system!
Best wishes,
Administrator |
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Thu Sep 11, 2008 - 01:45 PM
From administrator:
Dear Patricia,
I know you're having difficulty sending a new message to pennykai so by way of this post I am testing the system!
Best wishes,
Dear Patricia,
It all seems to be working OK so I suggest you try again but let me know if you still have difficulties.
Best wishes,
Administrator |
|
By:
Patricia
Postings:
5
From:
England
|
Posted:
Sun Sep 14, 2008 - 03:24 PM
From pennykai:
hi does anyone else have leiomyosarcoma cancerous fibroids would love to talk to anyone in the same situation
Hi, I tried sending you a message in August, not sure if you have seen it. I have Leiomyosarcoma and would be happy to talk to you. How are you doing now? Hope you are ok, best wishes. |
|
By:
pennykai
Postings:
7
From:
n/a
|
Posted:
Thu Sep 18, 2008 - 08:15 AM
Hi Patricia
sorry not seen your message till this morning, i am fine at the moment apart from hip and leg pains.If you would like to private email me thats fine you can on beeskaraoke755@hotmail.com by the way my name is julie, hope to speak to you soon.
|
|
By:
ryan_h
Postings:
6
From:
n/a
|
Posted:
Tue Nov 04, 2008 - 10:25 PM
Dear admin,
I was wondering if you can help me get in contact with someone in the Uk that has teh DFSB Sacoma liek myself as Is like to chat to them on line via email if it is possiable.
Im finding it very hard the way that some ppl in this country think that the only people that get cancer are older people.
Im also trying to find ppl that are in the age bracket of myself 22 - 30 so they can let me know how they have copied themselves.
I have now feel that this cancer has ruined by life and all i get from ppl that i have told who havent got cancer is pitty.
Thanks
Ryan
|
|
By:
administrator
Postings:
82
From:
n/a
|
Posted:
Thu Nov 06, 2008 - 09:50 AM
Dear Ryan,
Did you mean you have DFSP (Dermatofibrosarcoma protruberans)? If so there're lots of posts on this website (a little support group, in fact) - see: http://www.rarercancers.org.uk/forum/view_topic?topic_id=291
Take care,
Administrator |
|
By:
neety
Postings:
11
From:
Cheshire
|
Posted:
Wed Nov 19, 2008 - 06:07 AM
message for batham.i have not been on here for a bit. my email is neety.1965@yahoo.co.uk
|
|
By:
janeinthehills
Postings:
17
From:
UK
|
Posted:
Wed Apr 07, 2010 - 03:12 PM
For information:
There is a free kidney cancer patient meeting being held in London on 6th May 2010. Register online
https://secure.kidneycancer.org/np/clients/kca/event.jsp?event=1669
Also, for anyone having difficulties with funding for rare cancer treatments the Pamela Northcott Fund have been brilliant with us...
Best wishes to all
|
|
By:
saloplad99
Postings:
1
From:
Oswestry, Shropshire
|
Posted:
Fri Apr 09, 2010 - 09:38 PM
My wife has vulval cancer which was diagnosed just over one year ago. She was 43 at the time and had a radical vulvectomy a month and a half later. We had been told that this is a very agressive cancer and is very rare for her age group( about 4 "younger" women a year are diagnosed with this type) and usually affects older post menapausal ladies.Due to a reaccurrance in her right femoral lymph node she was referred to Birmingham City for treatment but unfortunately this has not been successful. Would love to hear from anyone who has had this cancer or their family
|
|
By:
bribie
Postings:
2
From:
sheffield uk
|
Posted:
Mon Jun 07, 2010 - 04:05 AM
My 20yr old grand daughter was diagnosed in March 2010 with a Neuroblastoma located in her abdomen. She is currently receiving treatment in the form of intensive chemotherapy and possibly an miBG treatment scan in the next couple of weeks.
Her Oncologist has told us that it is a very rare tumour and the available literature states that it is mostly found in very young children under the age of 2yrs?
Does anyone have a similar experience of this cancer in a young adult?
|
|
By:
daisy_bella
Postings:
2
From:
n/a
|
Posted:
Wed Jul 21, 2010 - 12:22 PM
From cin66:
Hi,
I would like to contact someone who has the same cancer as me. I was diagnosed with cancer of the nasal cavity I& sinuses in November 2005
|
|
By:
daisy_bella
Postings:
2
From:
n/a
|
Posted:
Wed Jul 21, 2010 - 12:36 PM
I was diagnosed with nasopharyngeal cancer in2006.
I had radio/chemotherapy which caused deafness.
my saliva glands were completely shut down This in turn
prevents me from eating or sleeping normally due to a dry mouth
I,m now having huge dental problems. I'm fighting a
huge battle to save my teeth.Dentures are not an option without saliva.
anyone got any advice.
|
