Spindle Cell Sarcoma

Hi ClaudiaL and welcome to our community

My wife has Leiomyosaroma and her route to diagnosis was - not the easiest pretty much sums it up.

Going through treatment can be really hard, then waiting to see if it is working - so good on here were often refer to scanxiety. Of course it really does not matter how much we worry it will not make a difference.

I found talking very helpful - and talking with total strangers even more so - my local Maggies is a god send but Macmillan are totally helpful and even posting on here too.

<<hugs>>

Steve 

Thanks for sharing your story! I think I will look for my local Maggie's too.

I agree, sometimes talking to strangers is easier than talking to our friends and families. Mostly when strangers are going through the same thing.

Thanks!

Hi hope you’re feeling well , was just wondering if you would mind letting me know how you are finding chemo ?

I am finding it very helpful to manage my symptoms. I managed to reduce my pain medication and overall I am feeling better. Before chemo I could barely do any house work and I would get very tired from walking or even standing. I remember the week before I started chemo, I went to the hospital for some tests and on the way to the tube I had to stop to take additional pain killers and seat for a bit. I was honestly struggling and I feel much better now.

Hi Claudia, my name is Kat and I hope you don’t mind me reaching out. I am so sorry to read your profile, and how much you’ve been through in the last few months. I wish I could share some wisdom with you but i am just like you struggling and wondered whether perhaps we could try and figure it out together. 

I am 36 and just recently given birth to a long awaited baby. End of November found lump on my pelvis, and after long three months of waiting I am seeing a surgeon for consultation this week to lay out a treatment plan. My mri showed a mass / a tumour. I am in no under illusion that it is not going to be good news as in three months it’s tripled in size and I just generally feeling extremely fatigued and have lost a lot of weight. So the odds are not in my favour. Just really struggling to process this all and it’s so hard at the moment as I am still waiting for the answers whilst the tumour keeps growing. 

How have you been feeling? Have you tried counselling at all? 

Big hugs 

Kat

Hi Claudio, I had a tumor on my left thigh which tripled in a short time. Went in a trial and it came back in a year in my lungs, it’s pretty aggressive. I just had my first round of Dozorubicin, this whole thing is very scary. I’m having a video with my Oncologist to go over things.