Uterine leiomyosarcoma

Sorry to read this Deb, enjoy your holiday but don't give up the fight. There are people that are keeping LMS stable with meds, hopefully this will be the same for you 

Take care

Chrissy x

I also have non alcoholic cirrhosis and in 2020 I had nine bleeds from varices. I couldn’t get insurance at all. Last  May I got insurance with allclear for £1000 for 12 months because I hadn’t had a bleed since December 2020 and my sarcoma was in remission. It runs out in May but we have a cruise booked for August this year so I was going to get insurance after the current one runs out. So I don’t know if I’ll get insurance with my current prognosis. I don’t know if two weeks away will be feasible anyway. 

Hi Deb,

I got an insurance policy last year with 'Insurance with' for £399 for a year with multiple named locations including the Caribbean. I contacted them  again in Jan to  say that my medical condition had changed and they said to call 6 weeks before travel, to let them know my condition up to that point. Seems like they will try to honor cover for repatriation - not for cancellation, to enable me to travel. Fingers crossed. I plan to get away to France for two weeks before surgery if all works to plan. My experience was to shop around. The first quote I got was £3k!

Wishing you all the best

Hazel x

Hi Chrissy,

Thanks for reaching out. Did you get the results from your latest CT scan? I really hope the lung mets remain stable, have you had any chemo? I received some really good news from Prof Jones a week ago Monday. I have no new Lung Mets and the 10 already there have all shrunk. I have one more round of Doxorubicin to go through in early April and then I meet with a surgeon on the 5th to see if they can remove the tumor from my abdomen. This means I could end up like you with some stability for a while, just regular CT scans to make sure the lung mets do not start to grow again. I finally have a glimmer of hope and its amazing how its lifted my spirits. Also planning to travel to France in May. Hurray!

Lovely to hear from another LMS warrior. 

Hazel x

Hi can I ask what the size of you’re nodes are please x

Hi,

Lung nodules 26mm, 13mm, 7mm, 9mm - rest under 5mm. They have all shrunk by a few mm on doxorubicin chemo.

Hazel

Hi HazelD  I'm sorry to jump in here. I was just wondering who diagnosed you in the end? I fear I might have the same (see profile for what I do know) but keep getting told it's probably fine. I'm so worried.

So pleased to hear you had good news recently

Harriet 

Hi Hazel, sorry for the late reply. My CT was clear for my groin and my lungs are stable thankfully. However I now have to go for an ultrasound and biopsy on my thigh as I have a lump which is getting bigger. 

Really pleased your metz are shrinking! Long may that continue and hopefully your last round of Doxorubicin went well.

Enjoy your travels, keeping holidays and days out booked gives us something to look forward too

Chrissy x

Hi Harriet,

Unfortuntaly your profile seems to be blocked? Perhaps contact a moderator. My diagnosis came from the pathology on the tumour, after a hystorectomy speedily performed through private medical insurance. I really hope you have not got uLMS.

Hazel

Hi Chrissy,

This is a rollercoaster of a life with cancer. The tumour in my abdomen is so painful. Surgery has been bought forward to to a couple of weeks time in the Royal Marsden London. All holidays cancelled which was so dissapointing. Despite the pain, I prefer life without Chemo! I have had to stop work for the first time, just doing a few hours this week to hand over important projects.

Let me know how it goes with your thigh

Hazel xx