NED update

[Irisisme]

Yep, you can have no obvious lesions on a CT scan and still need chemo!

"Encasement of the bowel and its mesentery by Carcinometistasis" is the issue for me. It seems the seeding is so extensive it is almost paralysing my bowel so my oncologist says 2nd line chemo may reduce it. He also said that it won't fix it ☹️ but as long as I can avoid yet another trip to A&E in agony I'll settle for that.

I'm going to have Carboplatin only so we can keep 'taxol in reserve - save it for later!

At least there isn't actually a bowel obstruction needing surgery. If I can balance opioids and laxitives just right, and not eat fibre, I might be able to go do some fun stuff - so no 'five-a-day' for me.

I got away with the worst side-effects of chemo first time around (just had to batten down the hatches on days 4 and 5) so, hopefully, I'll be ok this time, 'corse the Onc had to go & spoil that thought by telling me side-effects won't be the same and given my condition now, could be worse; Cheers mate!

Ho hum, onwards and upwards girls!

Iris xx

[Lyndy]

They always manage to say the things you don’t want to hear don’t they?! Interested to hear about your experience of seeding causing problems...we are all different. I was expecting tumours on the scan but with me its lymph nodes.

I have yet to discover what they might offer as second line...so useful to know that carbo as single agent is a possibility. Fingers crossed that you don’t get all the side effects..I’m sure you won’t!! X

[Irisisme in reply to Lyndy]

Yes; he DID say that I might not lose my hair on Carboplatin only 🙂👱‍♀️

[annieH1]

I had only 2 side effects on Carbo.Constipation and chronic itching on infusion,which steroids and antihistamine.

[Irisisme]

Thanks, Annie, that sounds much better than the '3 in 1' I had before 🙂👍

[Lynn_B]

I used carbo only after 2nd reocurence.Saving Taxol for another time.Very little side effects.Tired a couple of days.NO hair loss which made the treatment very doable.Its only been four months since finishing treatment.Having major bowel issues and bloating.Not sure if its just the bowels or another reocurance.Heading for a scan next week if symtoms dont go away.Best luck with your treatment.💙

[Irisisme in reply to Lynn_B]

Yes, sounds very doable. I hope your scan results are good news, Lynn.

Iris xx

[Kayito]

My wife had stage 3c Carsonosarcoma ! She had surgery to remove the Cancer. She also had chemo. She received Taxol and Carboplatin together as her first line treatment. The doctor said he would use Ifosfamide as a second line treatment. She did lose some hair but no other side effects. She has been NED (no evidence of disease ) for two years. I will pray for you , Stay strong and beat this thing.

John

[Irisisme in reply to Kayito]

Thank you,. Kayito, I hope you and your wife are enjoying life and continue to do so.

Iris xx