TRANSLATION

[hopefuluk]

Hi have just come across this forum and I am hopeful someone could translate this for me, my mother about 8 months ago was diagnosed with a rare cancer entitled serous carcinoma of the endometrium, she has had courses of chemotherapy she was allergic to the 1st one taxocarboplatin ( I think) and suffered an acute anaphylactic shock (hospital for a week with oxygen)she then had a course of 7 combined chemotherapies which have not worked at all the cancer has now spread from her endometrium to liver lungs, lymph glands, cervix and ovaries. Mum does not want a prognosis but it is very difficult for us watching her disappear in front of us and be completely helpless,
She has recently been transferred care to a professor in this field who will talk to us but difficult in front of mum he wrote this down for me can anyone translate it?
I think its pretty grim so don't worry xx
Serous papillary High grade carcinoma
• Peritoneal            
• Retroperitoneal
• Hepatic                                     mets  in all
• Pulmonary                                
From

?concomittant
Endometrial
(  +/-tubo ovarian primary)

[hopefuluk]

Thanks Alex you are an absolute star I'm going to try and convey your experiences to mum xxxxxx

[HVAC]

Sounds like she is depressed which is understandable. I was angry and depressed the first year. You feel like you have your life dumped upside down. My husband and I needed to communicate things we were afraid to say to each other. Things are a lot better. At the beginning we were in our own little worlds.

I had to acknowledge how hard this was on him. I thought is quietness meant he did not love me just was staying because it was the right thing. He truly loved me. He just did not know what to say.

I had to go on antidepressants and anti anxiety. I did not like the idea but now I am much better. Fear is my biggest issue it can turn into anger and then I suppress the anger and get depressed.

It is the lack of control with cancer. You lose control of your body. You have let them poke you with needles and examine you.   You have no control with your healthcare. You want your life back to what it was before cancer. It is totally unfair.

Distraction can be a good thing. I read to be distracted or play with my animals. It is hard even for loved ones.

Alex

[hopefuluk]

Oh Alex you are an absolute inspiration and have given me the kick up the backside I need ! Also I took at sneaky peek at your pics your artwork is fabulous.
I wish I could find something for Mum to get some inner peace shes very despondent at the moment she has always had a rocky road with my dad and now they are thrown together (he gave up his job he worked as a long  distance lorry driver away from home all week ) but they are getting there. Before you say it she has no faith wont join a group and basically watches tv all day so she that she can pretend this horribleness isn't happening ....

You mentioned before you had a rocky road  I hope things are improving for you xxxxxx

[HVAC]

Thanks Charlotte. I have had a rough life before the Cancer. I have learned you have to adapt. My motto is True contentment comes from playing the hand you are dealt. It helps me to try to help others. I felt so alone when I got Ovarian Cancer. I met up with a couple of women who started a support group. It helps to have someone going through the same thing.

Alex

[hopefuluk]

Alex you are by far the coolest person I know, your words have bought great comfort to me ...right back at you if you need a good old moan I'm right here too
Stay strong
much love Charlotte xxxxx

[HVAC]

I have had two transfusions. The last one was three weeks ago. They wait on the transfusion because the body has a mechanism that sometimes kicks in on its own. They try to let that happen with the risks with cross matching for a transfusion. She will feel a lot better a couple days after the transfusion.

If you have never heard of Palliative care you might look into it. It is support care you can have it any stage. Some people think it is hospice but it is not. Oncologists are great at killing cancer. They are not as well versed in pain control and other things as you would imagine. I get palliative care. I am on pain control and antidepressants. I feel so much better.  My quality of life is so much better. Duke has a Palliative team at the Cancer Hospital.

How are you holding up? My dad had cancer and were were very close. He lived 17 years but he was really sick. It is hard to watch someone you love get a bad cancer. In someways it is harder for those we love. You guys imagine things as bad. They are but when you are in it you are just living it days to day. In many ways my husband sufferers more than I. He so wants it to be taken away. He also hates the thought he might lose me. I hate the idea of leaving him so I have decided I am not leaving. He is stuck with me. He let me have a Dalmatian puppy last year so I have to stay so she does not drive him nuts. She is so amazingly cute. If she does something wrong she cocks her head side ways and look at me with her one blue and one brown eye. I usually start laughing. I have learned life is about moments. In the last three years I have had bad moments but some great moments. If you ever need someone to talk to you can post or do a private post.

Alex

[hopefuluk]

Hi Alex thank you for taking the time to reply ...your absolutely right it ***** . You sound like you are very brave to me; keep going! Mum has just been asked to take part in clinical trials but its phase 1 so .....
Pretty crappy at the moment we're just waiting to get her a blood transfusion as she's pretty anaemic last blood count was 8 so she needs 3 pints.. No real good news huh .
keep your chin up, you sound like a fighter much love xxxx

[HVAC]

She has cancer in her pertineum her lower belly below the diaphragm, outside the periteneal cavity, Liver, Lungs, do not know what concomittant means, and in the original places endometrial and ovary. Every case is diffreent but it does not sound good. I had a pretty spread ovarian cancer but mine was pushed back mostly with a drug called Doxil. I was on it over a year. For other women it does not work. I will probably not make it 5 years but who knows. Mine is in my spleen but that spreads through the blood system. I had  it in my liver diaphragm, both ovaries, tube, uterus, four places on the bowel, lymph system, and spleen. Now I only have it in the spleen. The Carboplatin/taxotere which are a double chemo was really rough on me. But I only had a mild allergic reaction. I lost a lot of weight and was really sick.

Sounds like your mother has a tougher cancer than me. There is Cistoplatin and Gemzar. The doctor has to figure out what will work. I did have to change hospitals from University of North Carolina to Duke. Duke is more cutting edge. With this cancer you need the best cancer treatment center you can get.

Your mother and her doctor have to decide her quality of life. My biggest fear is harder and harder treatments and dying anyway. I want to fight but at some point I want to be comfortable too.

I hope they are keeping her comfortable. There is pallative care which is not giving up or hospice it is support for cancer patients. I get it to deal with pain.

I am sorry ovarian cancer of any kind stinks.

Alex