Hi I was diagnosed with endometrial sarcoma 2020 just as we went into lock down. I was told it was stage 4 as it had spread in to my vagina hip and lung. I was distraught as you can imagine, I didn’t want to know how long I had but in my head it would be weeks. I had a full hysterectomy 5 weeks of radiotherapy and put on letrozole. The one in my lung disappeared also in my vagina, last year another one popped up in my lung and had that one removed. This year just recovering from having one removed from my breast. When I was first diagnosed with sarcoma I was told that chemotherapy wouldn’t work on this type of cancer was any one else told this?
I don’t know anything about the type of cancer you have but it’s worth looking for Facebook groups for this rare cancer. There will be people on these groups who have had different treatments with various results but you can ask your oncologist about options.
options give your hope so you need to ask about hormone therapy, different chemotherapy drugs and ask if you can do anything in regards to diet that could help.
I was told there was nothing they could do in 2013, so I hope you can have the same fortune I have had. I looked at ways to extend my life through some alternatives. I did some research on line and came up with some things that seemed to work for me and type of rare cancer I had. Please bear in mind all cancers are different and what helped me may have the opposite effect on different tumours so talk to your oncologist before you try anything. If it does no harm try it.
I also kept very positive, did lots of holidays and enjoyed life to the full.
so in 2013 when I had several tumours in my lung this reduced them to 2 and these 2 halved in size to a point they could remove them. Since then they have come back and I have had 5 operations to remove 8 tumours.
Im currently on palliative care chemotherapy as after 10 years my cancer has now spread to multiple mets on my lungs and a huge tumour in my groin. It’s incurable and terminal.
i was put on doxorubicin for 6 rounds in December which reduced the tumours on my lung by 50% but did not do much for the large tumour. I was in lots of pain and on pain killers but they did not help much. So I have used CBD oil.
I am now on Gemcitabine and Dacarbatine first round down but I do feel better in my mobility. You can buy up to 50% CBD, it’s £215 for a small bottle, it helps with anxiety and again for me it has helped me cope with the current situation. It has stopped the pain and I’m off pain killers so CBD could help yo.
Hi I've done similar research into the arginine...I dont eat protein and have tested bloods and most amino acids are now in the red...arginine is extremely close to it...but in the research I read the sarcoma cells switched to glutamine when it was blocked...we have that in abundance so not much I can do to alter that but low dietry levels I'm hoping will help...thanks for sharing your journey myowhatever. I also use herbs and supplements. Just read radical remission and found this really good, full of advice and empowering.
Tippyc I was told doxirubicin had a 25% success rate. I've seen on forums it's worked wonders for some but not for others. I was stable after 3 sessions but we stopped treatment and switched to radiotherapy as I needed shrinkage on the primary. My advice is learn as much as possible about the cancer type and adjust diet and supplements to work against it...I think this might help alongside conventional treatments. All the best
Annie
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