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Donnare and Judieanne how are your husbands going?

Rubyrose
Posts: 47
Joined: Feb 2011

My husband is still on the regorifineb, gets very tired. Has scan mid December and CEA tests this Friday. Fingers crossed. Hope you are all ok. Keep fighting and try to stay positive. Hugs Rubyrose

judieanne
Posts: 10
Joined: Oct 2012

My husband is off regorafenib - Although scan showed only small growth of 1 tumor there was greater intensity in the other tumors and along with cea levels going up and bilirubin high it was no longer viable. He was given the option to go on another trial- Tas 102 - but only 2 in 3 people get the drug so he has decided to give Folfiri/Cetuxinab another try. They have told him he has 3-6 mths but I hope he proves them wrong. He remains positive and since he doesn't start treatment for another 2 weeks and has been off regorafenib for 2 weeks he is relatively well, just gets tired. All our affairs are in order and we are planning a big family Christmas and the cricket club (who my hubby has been a playing member of for about 30years) are organising a re-union cricket match in his honour and inviting all the "oldies" back. We will make the most of his time left, what else can we do. I hope your scan goes well Rubyrose, please keep us informed. Wishing you all the best

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Judieanne, I don't know what to say except keep fighting. We could well be in the same boat. My husband gets so tired and looks so thin and weak. His bilirubin is high but still under the levels that would take him off of regorafinib. His haemoglobin is low as well so he may need a blood transfusion down the track. We have to book a scan for mid December and see Oncologist on 24th Dec with results. Am nervous it may not be good news, in which case we would do the same as you and try erbitux cetuximab again as that shrunk the tumours before. I think we all have to live each day. I would like to chat on the phone or by private email if you are interested. This is all so hard. I'm sure I read somewhere that Donaire's husband is in trouble as well. The three of us seem to be in similar situations. We are currently on our way to a golfing holiday in Yarrawonga which has been an annual event for almost 20 years with a large group of friends. Not sure how my husband will go golfing but we plan to enjoy as much as we can. Keep positive. Rubyrose x

donnare
Posts: 266
Joined: Jun 2009

Hi Rubyrose and Judianne,

Unfortunately my husband was never able to start the trial due to his bilirubin levels - too high. Hospice has been here since last Sunday and his condition is deteriorating rapidly. I feel like I am walking in a fog -- my husband is so very sick and I fear there is not much time left. I miss just sitting and talking with him, watching tv, just spending time together ... hell, I miss everything, and have no clue when I will ever be okay again. I have two wonderful daughters who are grieving for their dad, and I am trying to keep it together for them, but this it truly terrible. I hate cancer and the suffering and pain it brings.

I am sorry for the negative reply -- a very bad day here. I wish you both the very best with this treatment -- just take one day and at time and enjoy every minute you have together. I will keep you in my prayers.

All the best ,
Donna

judieanne
Posts: 10
Joined: Oct 2012

Oh Donna, I don't know what to say, it is a horrible disease and I feel for what you are going through at this time. My thoughts are with you and your daughters and I just hope that your husband finds peace and does not suffer too much. I know I will probably be where you are now in the not too distant future - like you i cannot imagine what my life will be like without him but i try to keep going day by day and be as "normal" as possible and enjoy every minute. Rubyrose, i hope xmas eve brings good news, i will be thinking about you and your hubby then - i would be happy to email you if you send me your email address (not sure if we can do that through here). Best wishes to you both and extra prayers for you Donna. Judy

Rubyrose
Posts: 47
Joined: Feb 2011

Hi Donna
I am sorry to hear that you are going through such a tough time. I fear I will be in the same situation. What can we do but to take each day and try to get through the best we can. It is also hard for your daughters. We also have two daughters who call their Dad every day and a son who is struggling with all of it. We are away on a holiday at the moment golfing with a large group of wonderful friends. My husband looks so sick and frail. He had his CEA tested last week and I was hoping the trial nurse would email me with the results. I haven't heard so am thinking they may not be good. He has scans in Dec and take the results to Onco Xmas Eve. If the worse happens, we will survive and we mustn't worry now. I have friends who have lost their lifelong partners and time helps the healing. I hope you're having better days and coping with this horrible disease. Take care and keep in touch. Rubyrose xx

judieanne
Posts: 10
Joined: Oct 2012

Hi Rubyrose
Enjoy your holiday and don't worry too much about the CEA - it will be there when you get back. We have just been away as well and it is nice to enjoy a few days of not having to think about cancer. Since we got back however, my hubby has been getting some pain in his liver area and his back. Does your husband have any pain?? We go to Royal Melb Hosp next Wednesday to discuss trial and start chemo the following Monday if we decide that way.Contact me with your private details and I will be happy to talk to you. Judy

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