Following my MOAS and CRS and HIPEC at Basingstoke I've been told that my primary cancer had it's origin deep within my ovarian tumour ( kruckenburgs) and did not originate in my appendix.
The type of cancer was a Gastrointestinal type and this is likely to have mutated from an ovarian germ cell.
The cancer is extremely rare and it appears that the oncologist have had to decide whether to treat me for GI type cancer or ovarian
It's seems most likely it's going to be Gynae for ovarian.
This means I'll be receiving ovarian targeted chemotherapy such as pacitaxol and not Folfori for colorectal origins.
Also I wonder where this puts me as a Pseudomyxoma Peritoni survivor. I had mets to my peritoneum and omentum which were removed and my tumour removal score was CC0 meaning all cancer was removed.
I also wonder , how effective the HIPEC chemo bath which is mitomycin is against my cancer type? If mine is ovarian origin.
Generally feeling fairly defeated. I'm having miserable bowel issues as I had a lower anterior resection of my rectum as my tumour had affixed itself to the outside of my rectum.
Has anyone else had this rare type of cancer?
Feel a bit alone with it.
Also I would like to know what others experience of pacitaxol was, as I've been told its going to be pretty tough. I believe I'll have 6 cycles.
Hi again Cheekat
I am glad that you have finally had your surgery and are getting some answers. I am sorry that you have had such a tough time.
It is hard with a rarer cancer to find others to share experiences with.
My cancer was endometrial and the chemo they tend to use is the same as for ovarian. Paclitaxel and carboplatin are the most common first line ones.
Paclitaxel | Macmillan Cancer Support
I found chemo tough at times but it was doable. My chemo was on a 21 day cycle so for the first day I was at the hospital and then 20 days at home. For the first week after chemo I felt pretty grotty but things would improve by the second week. By the 3rd week I could do most things. Most ladies seem to have 4-6 cycles.
My main side effects were tummy related, pain (back and hips/legs) fatigue, nausea. I also had some skin issues, sore mouth and eyes. I used scalp cooling and kept some hair.
My chemo day was around 8/9 to around 5.
I did find side effects built up with each cycle, especially the fatigue. It is important to be aware of infections and to contact your hospital if you do feel unwell. It was suggested to me to get a thermometer and to check regularly.
I was given a 24 hour cancer line to call at the hospital and found it useful for reassurance. Most of my side effects were manageable with medication and resolved when chemo finished.
I do still have some neuropathy.
I had a doctors review with each cycle. Bloods were taken regularly and I did have some issues but they were managed with treatment/transfusion.
If there is anything you want to ask about my chemo, please do so.
I wish you well with yours and hope that your bowel issues improve.
Jane
Hi- mine was a rare high grade type. Carcinoma sarcoma.
If you click on my name, the treatment etc is on my profile with all the timings etc.
I hope you hear back soon and can get started on yours.
Jane
