New to the forum
I just joined the forum today after coming across it searching for information in Irinotecan. I do not live in the USA like most of you but there doesn't seem to be a site out there like this for New Zealand.
My father has colorectal cancer with liver mets and we have just reached the two year mark in the battle against this. I moved home from overseas in July of 2008 to help out my Mum with care taking and just being there for my Dad during this time. He has had a rough ride through it all but still stays strong. I am 24yrs old and my Dad is 58.
In April 2008 he started treatment with Capecitabine and Oxaliplatin. He went through 3 treatments of this but got so sick with diarrhea that he ended up in hospital and on a walking frame, he was basically crawling to the bathroom and was in a lot of pain. Then the hiccups started, not the little hiccups like when you've eaten to fast but huge gasping hiccups. The hospital tried everything but could not find anything to stop it. The hiccups increased to almost 24hrs a day giving him no chance of rest. It wasn't until almost 2 weeks after this they finally did a scan and realised the chemotherapy drugs had caused his bowel to perforate, and the hiccups were being caused by air escaping from the bowel. We were angry at how long it took them to figure it out and how close to death he came from this. He was then only allowed to drink fortisip for quite some time until a scan showed the perforation had healed. The public system then decided they didn't want to risk giving him any more chemo and told him to go away and enjoy the 3 months he would have left.
Not one to give up easily we searched for some private options and found a fantastic doctor in another city in NZ who has been our angel for the past year and a half. He immediatly decided to remove the primary tumour in the colon and put in a portacath going into the hepatic artery into the liver. He used this portacath to deliver SIRT (internal radiation i think also known as yttrium-90) directly to his liver. Then every 4th week Dad had chemotherapy going directly into the liver. We saw amazing results from this treatment and were even able to travel as a family to New York and Washington DC for a vacation for 3 weeks at the end of last year. After stopping the chemo to see what would happen the liver tumours quickly began to grow so it was back on chemo which this time seemed not to work. He was elligble for another does of the internal radiation so we went to get this done in February. And sadly another complication. While injecting the dye to check that radiation wouldn't go anywhere in the body other than the liver a blood clot occured in the hepatic artery, part of which blocked off, travelling to the spleen and causing an infarction of the spleen. He was in immense pain and in hospital for almost 2 weeks. And sadly this clot has blocked access to the hepatic artery into the liver for good, meaning no more hepatic chemo or internal radiation.
So on we searched again and decided to try the new private cancer clinic here at home. They were not to scared to try systemic chemo again, even if we were a little after the last times effect. So last week on Tuesday my Dad had his first dose of Irinotecan. They have just given him a 1/2 dose and monitored him very closely to make sure it didn't cause another bowel perforation. It is now one week since the irinotecan and we can't believe our luck. Other than extreme tiredness the first 3 days there have been no side affects. He will have another dose on May 18th and then a scan will happen to see if it is having an impact.
So thats our story!! Everyone on this forum seems so positive and friendly i wanted to join and be a part of it too. We keep trying to stay positive every day and setting ourselves little short term goals as well as some long term ones too. Our current long term goal is for Dad to be well enough in December to travel to the norther hemisphere for a white christmas since he has always wanted a white christmas. We keep on hoping and praying and are continually greatful for those wonderful doctors out there who didn't give up on us :-)
Comments
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welcome
Hi Abbey,
Thanks for sharing your dad's story. I'm so glad you found a doctor who wasn't just going to give up on your dad. As you learned, when you find a closed door somewhere, you keep looking until a door somewhere else opens up. It's amazing how different doctors have such varied opinions on treating stage IV cancer. The ones who just want to say "I give up- go and enjoy what little time you have left"- well, those are the ones who you want to run away from!
Take care and blessings to you, your dad, and entire family.
Lisa0 -
welcome
sorry you had to find us, but I'm glad you have. There are a lot of great people on this board, and I am sure we can learn from your and your father's experiences. Sounds like he's really been through it, but more importantly it sounds like he's a fighter and has a good support system around him. You are wonderful, advocating for him and getting the care he deserves. I know things work so differently in other countries, but I find it hard to believe ANY doctor would just throw their hands up and expect you to do the same. Continue to fight and please come back often and let us know how your father's journey goes.
mary0 -
KRAS test
has your Dad ever had the KRAS test performed? when i had my second recurrence to liver ( 2 lesions ) Mayo Clinic here in the states performed a KRAS test which to explain simply it shows if some drugs can have a positive effect on Colon Cancer metastasis. you may want to look into this? i'm currently on Cetuximab and Irinotecan due to the KRAS result. hope all is well.
ed0 -
Hi Abbey + welcome to this
Hi Abbey + welcome to this board. I hope you will find it informative + supportive, as I have. I am sorry your Dad has gone through so much. I also live outside the US (but much closer than you) in Canada. We usually do have a white Christmas here but it is not guaranteed! Take good care!0 -
Abbey
You are in a great place, this board is amazing and the people here are so kind, informative and supportive. It sounds as though your dad has had great luck with doctors and treatments. Keep up the fight and I am wishing him all the best in this new treatment cycle.
Marie0 -
Welcome
Hi Abbey
What a terrific story of perseverance and determination. Welcome to the board - we hope that you will stay awhile and get to know everybody.
I can't wait to read the next chapter in your book!
Continued success on your dad's treatments - he sounds like a warrior and has been through quite an ordeal. Best wishes and fight on!
-Craig0 -
Welcome
I am so glad you found us. It would be wonderful if sites like this didnt need to be, but such is not the case. There are so many supportive, knowledgeable, caring people here it amazes me. I hope "we" can provide a positive source for you in whatever area you have a
need.
Based on your post, it sounds to me like we should be greatful you found us. Another informed, caring, fighter has joined our ranks. bless you and yours in your fight.
Greybeard0 -
Hello Abbey!greybeard64 said:Welcome
I am so glad you found us. It would be wonderful if sites like this didnt need to be, but such is not the case. There are so many supportive, knowledgeable, caring people here it amazes me. I hope "we" can provide a positive source for you in whatever area you have a
need.
Based on your post, it sounds to me like we should be greatful you found us. Another informed, caring, fighter has joined our ranks. bless you and yours in your fight.
Greybeard
Welcome to a wonderful, humble family. Your dad sure has been through alot, as most of us, and hopefully will find something that will stop this disease in its tracks. I am Stage 4 as well, and the only option for me was Maintenance Chemo, which I couldn't picture myself doing, having chemo every other week for the rest of my life? blah!
But, with a new onc, since my old one moved, gave me an option to try the Sir Spheres as well, I haven't done it yet, since I'm a little scared, but it was great to know that I had another option when the other doctor wouldn't give me any other options. You just never know.
He wanted me to do 4 rounds of Folfox first, but I did 3, snd still have no energy since the last one I had a couple weeks ago, so I'm playing hookey from it today, I just felt like I really needed the break. Being on chemo for 15 months, just takes a toll on you.
We're here for you whenever you need a chat, or have questions, but I wanted to just say Hi as well, and hope you are well, tell your dad we all said hi!
Hugsss!
~Donna0 -
Hopefully, the success your father seems to be attainingShayenne said:Hello Abbey!
Welcome to a wonderful, humble family. Your dad sure has been through alot, as most of us, and hopefully will find something that will stop this disease in its tracks. I am Stage 4 as well, and the only option for me was Maintenance Chemo, which I couldn't picture myself doing, having chemo every other week for the rest of my life? blah!
But, with a new onc, since my old one moved, gave me an option to try the Sir Spheres as well, I haven't done it yet, since I'm a little scared, but it was great to know that I had another option when the other doctor wouldn't give me any other options. You just never know.
He wanted me to do 4 rounds of Folfox first, but I did 3, snd still have no energy since the last one I had a couple weeks ago, so I'm playing hookey from it today, I just felt like I really needed the break. Being on chemo for 15 months, just takes a toll on you.
We're here for you whenever you need a chat, or have questions, but I wanted to just say Hi as well, and hope you are well, tell your dad we all said hi!
Hugsss!
~Donna
with current treatment will continue. He's been thro quite abit already.....Best of results for him (and you and rest of family)......steve0 -
Hi Abbey,
My husband is also
Hi Abbey,
My husband is also on irinotecan and is nauseated and tired during treatments. He has just started his second round and is starting to loose his hair. Next week he is scheduled for a scan and hopefully it is doing its job.
Avastin worked for my husband during his first treatment. Since my husband does not have the KRAS mutation hopefully Erbitux will also work well.
You are a great advocate for your dad. Keep positive.
Erin0 -
Sir SpheresShayenne said:Hello Abbey!
Welcome to a wonderful, humble family. Your dad sure has been through alot, as most of us, and hopefully will find something that will stop this disease in its tracks. I am Stage 4 as well, and the only option for me was Maintenance Chemo, which I couldn't picture myself doing, having chemo every other week for the rest of my life? blah!
But, with a new onc, since my old one moved, gave me an option to try the Sir Spheres as well, I haven't done it yet, since I'm a little scared, but it was great to know that I had another option when the other doctor wouldn't give me any other options. You just never know.
He wanted me to do 4 rounds of Folfox first, but I did 3, snd still have no energy since the last one I had a couple weeks ago, so I'm playing hookey from it today, I just felt like I really needed the break. Being on chemo for 15 months, just takes a toll on you.
We're here for you whenever you need a chat, or have questions, but I wanted to just say Hi as well, and hope you are well, tell your dad we all said hi!
Hugsss!
~Donna
Hi Donna,
Thanks for your message. Hope you are doing well and having a good week. 15months of chemo is definitley a lot, it's no wonder you needed a break.
Just wanted to let you know if you have any questions about the sir spheres or any more specific details about how my Dad coped with it feel free to ask and i'll love to help answer any questions if i can.
Abbey0
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