I will show my husband your posts....... He needs some inspiration at the moment.....
He has had two stints in hospital over the last month, one for unexplained internal bleeding (2 transfusions later and they still don't know what caused it).... And kidney failure. As his left kidney (ureter)was blocked by tumor last October and has now perished, the last thing we thought was that his right ureter would block up too...... But blocked she is..... They managed to get a stent up but are not confident they will be able to do it again......
So it looks like we will be back to Sydney to see prof Morris sometime sooner rather than later....... And another stay with Ann at Bezzina-what a godsend that place is for regional patients........
When will someone invent a cure for this blasted disease??????
Its a hard yard to take isnt it.
I haven't dealt with my 47 yr old sister passing in March as yet.
I have now found out one of my cousins who is 41 has been diagnsd with liver cancer ...
and then you see the people who carry on with no hassles in their lives bbut they make trouble for others ...
Challanges we have to wok out why we get them.
I do hope your man will be ok.
Send my thoughts both of your ways ....
I think it is just as hard for the one doing the caring.
They feel helpless most of the time.
Wouldnt want either role to be wished on anyone .... Friend or foe
At least in Australia we don't have to worry about paying a fortune for the chemotherapy drugs, thanks to the work of peritoneal mesothelioma hero Bernie Banton, who got the Australian Government to pay for them on the PBS Pharmaceutical Benefits Scheme.
The general public perception of chemotherapy is negative, but the important thing to remember is that chemotherapy is different for every person.
I found the mesothelioma drugs Carboplatin (longer and slower acting than Cisplatin) with Pemetrexed (Alimta) to be very well tolerated. No nausea or vomiting, and my hair did not fall out.
The HIPEC used during the surgery of Cisplatin and Doxyrubicin did make me shed a little hair when brushing, and it was only in the open cavity, and not even in the bloodstream.
After the peritonectomy surgery for peri meso, patients usually use Cisplatin usually 4 cycles 3 weeks apart. One oncologist told me that he didn't prefer Cisplatin over Carboplatin as there are studies to show the effectiveness of both. Another oncologist picked Carboplatin, and that is what I am going to use.
Does anyone have experience or opinion of either Cisplatin or Carboplatin with Pemetrexed?
This direct chemo in the peritoneal cavity seems a powerful way to do it. You get concentrated chemo exactly where you need it. I was told it is not easy to do repeat HIPEC because there is not much space in the belly after the operation. I read in one study they used only one litre.
What is 5fu? A drug name?
As an oncologist told me last week, the treatment using chemotherapy for peritoneal mesothelioma after a peritonectomy is largely uncharted. We have to make decisions about treatment based on limited information.
Compared to before the peritonectomy operation my life is also a lot easier and comfortable because there is no ascitic fluid to worry about now that the peritoneum is gone.
I dont know much about the medical side of things beside what I researched for my operation.
5FU is the name of chemo drug that was fed into the abdominal cavity after surgery, they used Mitomycin C in the HIPEC I think.
I had the Pseudomyxoma Peritonei PMP cancer & Peritonectomy surgery.
Most of the information that I recieved & re-shearched was written correctly on the site www.macmillan.org.uk/Cancerinformation/
In other words what my surgeon told me & what I found on this site were very similar and I showed this to my surgon to make sure what I was reading was correct.
Once I knew this was right for my surgery I didnt research much more only went for people support then ...
I didnt want to overload my worries with other sites & wrong info.
I feel quiet good ... considering what I have been through.
I am starting to strengthen my stomach muscles slowly & getting back into life ....
One day at a time :-)
d a peritonectomy operation last March at St. George Hospital by Prof Morris. Was 6 weeks in hospital, had a few complications but once out of hospital have never looked back. Husband and at times my grown up children stayed at Bezzini House which was a godsend. Have had 2 checkups since with Prof Morris and all is going excellent. Was at the maximum stage to have operation so very thankful that Prof. Morris proceeded with surgery. Waited 5 weeks after Angiogram and Pet scan. Have had 12 cycles of chemo since May but finally finished. This year my husband and I plan to travel to various areas of Australia. Positive attitude is very important and I now walk up to 5 kms per day, have last 27 kgs but better for it. No pain since operation so life couldnt be better. Hope it continues.
I have been on the waiting list for MOAS at PA hospital Brisbane since January. I was referred to them last October following a laparotomy and debulking for suspected Ovarian cancer, which actually proved to be Pseudomyxoma Peritonei from Appendiceal Cancer
It seems there are only 2 hospitals in Australia undertaking this operation. The PA in Brisbane, and St George in Sydney. I have scoured the Web for information and found the UK websites very informative. I have never heard of anyone in Queensland having this type of Cancer. I am told this is very slow growing, but this doesnt do much to ease my anxieties! The waiting is endless.
I have had the opp at the P.A. Last year - one year exactly last Thursday the 18th
I live in Brisbane in Camp Hill - about 10 min from the hospital.
Email me and I will send you my personal email & mobile no.
Answer any questions you have :-)
Best of luck with your treatment
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