Dedifferentiated liposarcoma

Hi Jmd25 

My wife has Leiomyosarcoma so a different brand of sarcoma but also rare. She never wanted a prognosis but she was also told chemotherapy was unlikely to be effective but for her is was the only option on the table. We were very fortunate though that the second cehmo they tried ended up stopping her cancer growing and so we have been living with her cancer for over 10 years now.

We have a group here Soft tissue sarcomas forum but there is also a good resource in sarcoma uk. We are quite lucky to live near Oxford as that is one of the sarcoma specialist centres.

It is good to reach out on here especially with a rare cancer since it would be a challenge to find anyone with a similar diagnosis otherwise.

<<hugs>>

Steve

Thank you Steve. I appreciate your reply. My husband was given 3 months in June so we’re so very grateful that the chemotherapy has slowed down the growth. Regrettably the Doxyrubecin treatment ( which was brutal) has finished due to its potency. 
I am very happy to hear that chemo has helped your wife . That’s very reassuring as we were also told that it wouldn’t be effective. 
My husband has a scan next week so hopefully the results will be encouraging. Its a minefield and we’re taking small steps. 
Thank you 

Hi Jmd25 

Janice only managed half the course of Doxyrubecin because while it did knock back the cancer unfortunately some of the cancer cells it killed happened to be the wall of her lung and so she ended up with a lung collapse. Quite a few issues but they eventually managed to sort that out with surgical pleurodesis and later she had a course of Gemcatabine - often given in a combination but they thought on its own it might be more lung friendly.

Fingers crossed for the scan, hopefully not to long to wait for the results.

<<hugs>

Steve

Thank you Steve. I hope that your wife is doing well . I understand why they call the Doxyrubecin The Red Devil. 
Fingers crossed that it has had an effect on Colin’s tumours. Its awful waiting to hear results. 

Hi jmd25. My husband has a rare but very aggressive sarcoma and has maybe a year or so. He is about to start chemo but we are told its only 50/50 that it will work enough to buy him a bit more time.

Its been horrid, the waiting for results and chemo so long, given the urgency and in that time its spread to lungs, liver, abdomen and muscles. He is positive as well.

Cominng here helps you feel less alone, do keep chatting here, I understand that quaking feeling too.

Hi 

Thank you for replying. I’m so sorry to hear about your husband. 
My husband was misdiagnosed initially. He was told he had a calcified lump as a result of an old sports injury. It was only because he queried this over 12 months that he got the correct diagnosis. 
Chemo seems to have helped him get some normalcy back. Prior to that he couldn’t leave the house in fear of not being near a toilet. It was so awful for him. 

Now chemo is over we’re worried that his old symptoms will return. He has a scan on Tuesday too so that’s worrying. 

I’m so glad to be able to talk to other people. It really helps x

Hi Steve, 

thank you for sharing your wife’s experience.

i have a liposarcoma and i had the same experience. Doxorubicin as my first chemo didn’t work and the second one is stoping the growth of the tumor but they can’t stop chemo, so I am a bit devastated as my body is getting weaker.

it is nice to read a positive experience.