Leiomyosarcoma

hi  

I'm sure someone has welcomed you already but if not, a warm welcome from me

I'm also being treated at the RMH Chelsea, I had breast cancer in 2015 and finished a year of Herceptin in November 2016, due for another mammogram in June, I'm more than happy to meet for a coffee up in outpatients if you wish.

Poor old Jasper was feeling a bit isolated up in the NE with this fairly rare cancer, I was thinking about messaging on the thread the other day to see if she'd found someone to chat to, Newcastle is her nearest specialist centre.

I suffered a mis-diagnosis and always struggle with hearing scans are 'clear' and breast doesn't offer regular scans, we have to detect changes ourselves and report, it's down to whether a particular symptom is consistent and persistent.  I did have some scans recently and the only comment was some fluid on my lungs, but I presume that's from a couple of nasty chest infections at the tail end of last year.

Cancer is different for all of us but a lot of the fears are the same.

Did you try anything for the anxiety?  Meds ? Mediation ? ( I meant meditation !) baking ? walking ? talking to animals?

hugs

Carolyn

xxxxx

Welcome to the group x

I was first diagnosed with Leiomyosarcoma in 2009 and have had 2 recurrences as well as mets in right  lung which are slow growing.

I am under Mr Leahy at The Christie and have had a few sessions with the psychotherapist to help cope with my diagnosis 

There is a holistic Plan Be available which consists of alternative therapy that helps to be here now and not overthink the future.

Ask your MacMillan nurse for advice on any complimentary therapies that may be available.

Sending hugs and positive energy x

Anne x

My wife's Leiomyosarcoma was not diagnosed following her emergency hysterectomy but many months afterwards, she has lots of mets through both lungs (very decorative on a PET-CT scan). For a while she was on watch and wait, then they decided to try doxyrubicin - it was effective in treating the cancer but caused a lung to collapse, once they had repaired that they then decide to try gemcatabine as a single agent, seems to have stopped the cancer growing and we are back on watch and wait and have been for 2 years and now only get to see the docs every 3 months or so - in turn my wife is in the best health in ages.

One thing we have got used to is seeing GPs reach for wikipedia if we mention LMS, sometimes wonder what would happen if I edited Janices name on the page.

We are lucky in that we live quite close to Oxford so another Sarcoma centre.

<<hugs>>

Steve

Hello JDBunny please get in touch again. I was diagnosed with LMS in 2008 so understand how you feel. Happy to share my experiences since then. Keep positive. 

Hello Rambo123

After a sleepless night, I attended the Hospital today and had an MRI to see if the growth in my pelvis is operable.

I have read up on LMS & the pelvis, which perhaps was unwise as it could mean resection of bowel and bladder thus a colostomy etc.

Thank you for your message, it is great that you have survived this terrible disease now for some nearly 10 years and would very much like to hear how you have done this.

Many many thanks again

JD BUNNY.

Hi Anne

I was just browsing the postings on this site and came across yours from May this year. My wife has Leiomyosarcoma (diagnosed March 2016) which has metastasised to her lungs and brain. She's had chemo and radiotherapy over the past year or so. She's currently fairly stable (apart from mild/moderate breathlessness) but our oncologist here in Leeds has said there is no further treatment planned that could help improve her condition, which is obviously very upsetting. I was interested about this Plan Be you mentioned and wondered where I might find more information about this. I'm struggling to cope with the situation right now and this idea of focussing on the here and now and not overthinking the future is certainly something I feel I could benefit from.

Thanks,

Edward

Hello

Sorry to have taken so long to reply.  Hope things are going OK. My history is that I did not have mets in the pelvis but in the lungs.

I have had 5 Operations to remove small cancers after having CT scans every few months to see if there is a reoccurrence. I am lucky in that it seems to be slow growing. Also the docs are experimenting with hormone drugs to see if they can slow down or stop the reoccurrence.  

Let me know how you are getting on.

Rambo 123

Hello Rambo 123.

Because I was originally referred to The Royal Marsden, but it was agreed for scans etc to take place more locally, all my results are copied to them for comment, or advice. All correspondence involving RMH is copied to me as part of a patient initiative. 

I received a copy, which stated the PET Scan was incomplete, thus unable to determine the mass. I have since had a dedicated pelvic MRI so wait until Jenuary 8th for results and treatment options. 

Depending on the results of the MRI, The Royal Marsden have suggested that if it is localised consideration be given to radiotherapy if feasible, or if there is more scattered areas of the disease the recommendation is first line chemotherapy in the form of a single agent doxorubicin. I am aware however that leiomyosarcoma doe not respond well to either..  In the maentime I am just going to enjoy Christmas.

Many thanks for keeping in touch and I wish you joy of this festive season and hope that 2018 keeps you safe,

JDBunny

Hello JDBunny

I will keep my fingers crossed for the MRI. And I agree I am going to enjoy Christmas as well. So Happy Christmas to you and your family and a Happy New Year. I will raise a glass of something to you for 2018.

Rambo 123

I’m really sorry to hear your story - a hysterectomy In itself is a massive thing to cope with - it is good to chat to people on here but I haven’t found anyone yet like myself - I would love to find someone who has had the same tumour - gist - had the histerectomy and on adjuvant drug therapy - I expect you would also like to hear of an exact case like yours.  I’m always available to chat if that’s any help