Hiy,

Sorry to hear about your mum.  Yes, it is true that ESS does not always respond to chemotherapy.  I have Stage 4 Undifferentiated Uterine Sarcoma with growths on my peritoneum that cannot be removed.    I have now had 5 cycles of Doxorubicin and the tumours have shrunk.  It is not a cure but it gives me more time.  The Doxorubicin is usually used first, then you have a break and then you usually have to go on another chemo.  I feel ill for about one week of the three week cycle, so two weeks feeling ok.

Wishing your mum all the best, it is hard.  She will need your support.

Sue x

Hi Sue

I am about to start Doxorubicon I have peritoneal cancer I have already had 2 other rounds of chemo this is the last chance saloon for me I was hoping I could keep it at bay with last round of chemo I had, I know everyone is different but can you tell me if you had any bad side effects with it ? 
 

Heather.

Hi Heather, 

Sorry to hear that you are onto your third line of chemo.  I have uterine cancer with mets in the peritoneum great place to get cancer isn't it, they just can't take it out like other cancers.  I had Doxorubicin as first line chemo and have just finished my last cycle.  It won't cure me but it will buy time. After Cycle 4 there was slight shrinkage in all tumours and as they were growing very aggressively, it is an amazing result.

You have treatment once every 21 days and the infusion takes about 30 mins plus flushing time.  I had mine on the Wednesday and started feeling a bit off by Saturday.  10 days feeling rough and then recovered quickly up to Day 21 ready to start over.

Before you read of the side effects I had, I would just say - I would do it all over again.  I can only say that I have been particularly unlucky and I am sure other people get away with far less.  This is what I had:

Common side effects - hair loss, nausea, fatigue, lack of appetite, weight loss, mouth sores, oral mucositis, loss of sense of taste.

Less common side effects - neutropenia from Cycle 3 (given injections), phlebitis in veins that had been used for infusions (from Cycle 3), anaemia requiring a blood transfusion (Cycle 6) 

Serious side effects - pulmonary embolism (after 3rd cycle), heart damage (diagnosed after 4th cycle).

As I said, I have just been incredibly unlucky and many people just have the common side effects.

What I would say in hind sight is - do not have the chemo through the veins in your arm - ask for either a Picc Line or a Port-a-cath.  Do not even start the chemo without it, this is a very harsh chemo and quickly damages your veins.  A Picc Line is very easy to put in and you would probably need 2 to cover the time of the chemo.  A Port would just go in and stay there for almost as long as you need it, less hassle, no dressing changes, swim / bathe without problems; also the port can be used for the contrast used in CT Scans and to take blood.  Just do not do this chemo without one of them.

i would also insist on a heart protectant, this is given with the chemo.  My biggest problem affecting my quality of life is not the cancer but the effects of the damage to my heart.  It is a rare side effect but it happens.  It may become obvious right away or several years later.  Definitely do not have the heart protectant through a vein in your lower arm - it burns.

I hope that you have not put you off, I am hoping that I will be able to have a chemo break of a few months before going on the next line of treatment.  I would do it again, even with this knowledge, however, with the heart protectant and a port.  You can't prevent the pulmonary embolism, just be aware that it is a real risk.

All the best with whatever you decide.  Best wishes

Sue x

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Hi Sue

Thanks for your reply & all the info don't think I can chance any of that sounds absolutely horrendous maybe better to have quality of life.

10 days is a long time to be feeling rough mine used to kick in a couple of days after but after 3 or 4 days starting to feel better, & no side effects with the 2nd lot other than hair loss.

Hope things get better for you Sue.

Heather x