Feb 08, 2013 - 8:59 am
Hi guys, My mum is 69 and lives in the UK. She was diagnosed just over 2 years ago with PPC (Low grade serous papillary adenocarcinoma) . She had gotten sister mary joseph nodules in her navel which is why she was tested. Her CA125 was approx 120 She had a biopsey taken and an exploratory surgery. They decided that she had too big of a scattering of microscopic tumors so said surgery wasnt an option.
She then went to a hospital near by with an oncology unit and was given a course of carboplatin. This helped lower her CA125 levels a little but not much. Scans showed the tumors were still there. Dr's kept saying it was difficult to tell between the tumors and calcification.
She was then put on letrozol. This helped control the cancer and slow it down a little for about 8 months. After this the cancer started growing quicker again and her CA125 started rising again.
It was at this point that we got her referred to the Royal Marsden. They told us it was a shame the other hospital hadnt combined carboplatin and taxol as together the chances of success are much higher. They also told us that because she had prev had carboplatin she couldnt have it again. They told us about a MK inhibitors drug trial that might be suitable but wasnt ready yet.
They decided to give her Taxol chemo. They said she could have each course once a week for 6 weeks and have a maximum of 6 courses with a 2 week break between courses and a scan to check on progress etc. She started the first course. got 3 weeks in and her platelets or something similar had dropped so low they had to give her a weeks break and 2 injections to boost her just to get her through the next 3 weeks of that course. She managed ok but side effects of that chemo compared to carboplatin were pretty horrible.
After 1st course we went back for her scan and discovered that during that time she had grown 2 new 3cm tumors in her right illiac fosser and the chemo wasnt working. My mum was obviously very upset and distressed. They then told us she wasnt suitable for the mk inhibitors drug trial due to a lack of mutation in her cancer. The Royal Marsden then decided they would try to control the cancer and hope that they could maybe make the speed in which it is growing lessened by putting mum on tamoxifen. They told her she could never be cancer free or even get cancer in reission but hoped they could prolong her life.
That was last Oct perhaps. Now we are in Feb. Since xmas (well on and off b4 a lot but all time now) mum has barely eaten anything she had very bad diarrohea most of Jan and part of Dec. By late Jan it started turning to sickness and GP got mum in local hospital. They let her stay 2 nights and gave her IV fluids. Managed to get sickness under control but sent her home still with diarrohea. 2 or 3 days later she got really bad and got sickness again followed by trying to sit on loo to go to the loo and having total blackness go in front of her eyes. We got GP out again. He didnt want to get her in hospital so instead spoke to our local hospice to see if she could do 2 week respite. we had to wait a couple of days for a bed but in the interim the hospice at home people came and put mum on syringe drives with anti sickness drugs in.
Once she got into the hospice they discovered she has a partial blockage. They have tried several anti sickness meds and another med which si meant to help dry up gastric juice but as yet none are stopping her sickness. They have no plans at mo to do anything else to help her blockage. They havent even changed her diet and are still offering her such things as roast pork sandwiches on the menu.
Im struggling to find things to help her. I have looked at sites who recommend more liquid based low fibre diets for blockages. Does anyone have any dietary advice at all? She is getting heavy gastric juice build up causing stomach distension and pain. I can PM anyone more details.
Also i have recently found a place in North Hampshire and Basingstoke hospital, they do a 'contraversial procedure' for patients with things like cancer of the appendix which often spreads to the adominal cavity including the peritoneal wall. They undertake a massive surgery which is known as the mother of all surgerys (MOAS) followed by a chemo bath (chemo heated and placed directly inside the abdominal cavity and left for a set time, then drained). I wodnered if anyone had any opinions on this? as we are currently trying to get a second opinion from them.
Many Thanks in Advance