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Old 11-28-2007, 08:22 AM   #1
SbY SbY is offline
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Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carcinoma

Hey!

Some time has past since my last post to this topic about my mother. She is still alive, but how long, nobody knows.

The problem is still in her spine, the tumor is there and there is nothing we and the doctors can do. Surgery is not an option because of the severe death/paralysing danger. There are some symtoms of paralysis to come (shoulders, hip, knees etc are in pain and feel studdered)

The biggest news is the medication that she was assigned 4 months ago. She's one of the first here in Finland to be treated with Sutent. The 30 day set is pretty expensive, 3300€ = 5000$, luckily we don't have to pay more than 1000€ once (after that everything is for free, government pays)

The mental status of my mother has decreased for the past few months, all tough the doctors have said, that Sutent will probably (if it works) make her life easier, my mother thinks that it will be her saviour. We see now that the Sutent has failed to work, to be honest she is in the worst shape ever (however I cannot blaim Sutent, the drug itself, even the doctors cannot say, we only know that it has not helped.)

So what has happened. My mother has had difficulties with eating and drinking water for these past months. All of this happens after th 2nd weel of the Sutent cure. Everything is quite fine, if we keep watching her eating and drinking. We have to feed her and force her to drink water. Usually after the 2nd week of Sutent the problems start to show up, mouth dry, mouth bleeding etc. After that comes that she cannot eat and drink. Then comes the first vomiting stage, the it gets more severe etc

She has now dehydrated severely once a monthresulting serious vomiting and hospital care. She cannot even walk or stand up from the bed in a week when the dehydration/vomiting comes. Her weight usually raises +4kg while in an IV natrium/hydration in a hospital. All of this has happened after eating Sutent for 3 weeks.

She has severe stomach acid problems, the stuff that they give also into vains in the hospital (stomach shield or recurring stuff) cannot be given more than spesific amount a day, so after that she has couple of hours when she does not have any stomach pain. This is also after three weeks of eating Sutent.

So, we, the close ones don't know what to do. All we can do is celebrate all the good days. We've done so much and it feels like nothing, we, as a family moved 300 miles up north just to support my mother and Im living in hotels for the week to be able to work...

My mother is 52 years old, Im 28 TODAY. Mom looks older than her mother, my grand mother, it is just horrible...

Cheers all to you guys, keep up the faith, love is the greatest thing you can have and to practice when it comes to cancer and other situation/illnesses.


Medication of my mother per day:

3 x 60mg Oxycontin
1 x 10 mg OxyNorm (when needed)
3 x Opamox 30mg (mental, contemporary)
1 x Syfis (stomach protection)
2 x blood pressure (Sutent raises the blood pressure)
1 x Sutent 50mg (30 days in a row, then 2 weeks off, now 3rd cure ongoing but stopped with bad results)

I can't even remember all...

Jussi from Finland

Last edited by SbY; 11-28-2007 at 09:00 AM.

 
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Old 12-06-2007, 05:19 AM   #2
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

SBY,

How are things going? Hows mom? I hope all is well.


lilsis

 
Old 03-26-2008, 06:20 AM   #3
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

Hey!

A little update about my mother.

So, she ate Sutent for a while and the effects were 0 positive. That drug almost killed her, which actually would've not been a bad thing. The side effects of Sutent were so bad that she actually had to cancel eating it. After a while the studies showed that there had been no positive effect on the cancer.

Soon after stopping Sutent, my mother could enjoy life for a while, then the cancer started to take total control. She is now eating Nexavar, luckily there isn't any bad side effects.

So, what has happened and what is to come. She was diagnosed a little over a year ago, and now she is passing away. The cancer started from her left kidney and went to her spine 12th TH to be exact.

Nowadays the cancer is in her skull, 11th,12th,13th TH, pelvis,ankles,wrists,ribs,knees and in the skin of her head and back.

What I do not understand is that in many cases the rcc spreads to lungs and the brain, but in my mothers case only in her bone. She cannot move anymore except her left arm and head. They pump everyday one litre of fluid from her stomach, the first day what they managed to get into bags was 7litres...

Her voice is almost gone, so talking is difficult, she's taking all the pain medication in the world and it does not help.

She has a 125 microgram Durogesic and for accute pain se eats 120mg of Oxynorm per day, now given in liguid because the stomach does not work.

We all wish that she could sleep away without pain, but in her case the disease has done everything for her to feel like burning in hell.

Jussi

 
Old 04-21-2008, 04:18 AM   #4
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Re: Update: My mother and the battle against RCC Renal Cell Carci

Hey!

This will be my last update to this thread.

My mother passed away 13th April 10.40pm. The last 24 hours were very painful for my mother and to us family.

She lost her conciousness in Saturday morning, we believe the last 12 hours were not painfull for her. In the last stages, in 3-4 hours before she died, she developed a very high fever (over 42'C) and she just stopped breathing.

So after a year of struggling it is all over now, don't know what to say, it is just over. I was next to her 69 hours without sleep before she died, I'm happy that we had those conversations with her just 24h before she died, she could even talk a little before the last stage...

Life is cruel, but don't you people stop fighting! Im sorry for my short message, but I just cannot find the words...

For the people who wanna see all my posts about my mother, click my alias and it is all there...


Best Regards,

Jussi from Finland

 
Old 04-21-2008, 07:13 AM   #5
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

Jessi

I am so sorry to hear about your mom. I am sending my regards and prayers your way and to the family.

I know its hard to find words to express the way we feel. However we all know or will know some day the feelings that come with losing a loved one.

I hope this finds all doing okay.

A/F Lilsis

 
Old 04-23-2008, 08:36 PM   #6
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

I just wanted to express my sympathy to everyone on here. I know all about this kidney cancer. My uncle who was only 40yrs. passed away in Nov. 2007. He suffered so much. His wife had the same exact cancer when she was only 19yrs. However, it was contained and after her kidney was removed she was fine. My sister also developed cancer at the age of 11yrs. and then in her
10th year of remission she got it back again, in her kidney. She only lived 3months and was only 21yrs. This is such a horrible disease and I feel for each and everyone of you. My family and I are putting together an annual Car Show & Poker Run to raise money where all proceeds will to to the University of Pittsburghs Cancer Institute for Kidney cancer....We feel we need to do something to try and help anyone who needs it!!!! Never stop fighting!!! You are all in my prayers..........

 
Old 04-24-2008, 04:36 AM   #7
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

Six,

Same to you in regards to having to deal with this disease. I think you have the right idea for helping others. Awareness of this disease is just not out there. I have said to me father (who has this) its like when you get a new car no body has it until you do, or in kidney cancers case until you
have knowledge of it. In regards to knowing that its is out there. Best wishes to you and your family. Good luck with your fundraiser.

If you need any help ley me know.

lilsis

 
Old 04-28-2008, 12:40 PM   #8
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

how did the government pay for the rest my mother is going to the netherlands for treatment she has term. cancer in her lung liver spleen and neck and only 47. we dont really have the money but that is besides the point at this time. she is strong and we know she can pull through. i know there are ways to get help finatialy but dont know where to do can you help with any advice?

Also i hope you and your family are doing well. your in my prayers. stay strong.

thanks autumn

 
Old 05-01-2008, 04:05 AM   #9
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Re: Update: My father was just diagnosed with terminal cancer... RCC Renal Cell Carci

Quote:
Originally Posted by helpmymom22 View Post
how did the government pay for the rest

Hey!

The system in Finland is, that all the medication for your illness is free after you have paid over 1200€ for it. This is per annum, so you have to pay the 1200€ every year.

I did a little calculation, and my mother left drugs (Oxycodone, Nexavar plus other drugs) for allmost 10 000€ worth of money. We donated all the drugs for the local cancer assosiation, so they can give them out to someone who does not have the 1200€ to start with.

This is how the system works here...

 
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