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My husband starts chemo next week

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

he had some atypical cells come back in a scraping from his bile ducts. He has a structure in his duodenum as well that also had atypical cells. Cancer in Situ they called it. He has tissue growth around his common bile duct they are watching didn't biopsy it because he knew he was doing chemo so if it shrinks it was probably cancer! He spent two weeks in the hospital in August and another week in September due to his stupid stent in his duct clogging. His bilirubin was up to 15 and his amonia levels were horrible, I was really worried it was the end.

He feels great now, eating well. Had to have his port removed during the last stay it slipped out of place and got a huge blood clot. So he had a new one put in last week. I am going on a Disney cruise with my kids, he is staying behind with our autistic son who got very anxious and did not want to go. It’s not my husband’s thing  either.  The day I come back he starts, he did really well last time hoping it goes as well. She was adding vectibix or Erbitux  to it  (folFox) but he telling her not too. Side effects seem not worth the benefit In his case only. If the folfox doesn’t work he might try it then. 

Thats my not great but could be way worse update, it’s been a very rough aug-sept hoping it gets a bit easier.

abita's picture
abita
Posts: 642
Joined: Dec 2017

First: I was wondering how y'all are doing.

Second: Which erbutix side effect is he worried about? I am taking it with irnotecan.I know everyone is different, but I have the rash enough to have people think it is working, and it was as per my last scan, but not enough to bother me too bad. I took an antibiotic from my very first infusion. Then I stopped the antibiotic. I get a few pimples on my face. And some that I don't notice on head, upper back, and lower chest that itch once n a while, and definitely dry skin. I also am not taking it with folfox, which I could see has enough issues that don't want more. Just mentioning because if it could really help, not everyone gets it so bad as some of the horror stories. Again though, I am only saying for some people it is worth it. For me though I HAD to find a drug that works, sounds like your husband can have success with just folfox.

SoCal42's picture
SoCal42
Posts: 57
Joined: Jul 2017

Bile duct blockages are no fun! I have bile duct issues in addition to rectal cancer. Not related as in your case, but definitely still a pain. I was originally on FOLFOX, but ended up with lung metastases afterwards. Am now near the end of a 6-month course of FOLFIRI + Erbitux and also lung radiation. The Erbitux side effects are variable from person to person, but there is a correlation between a more severe reaction to Erbitux and improved survivorship. So the bad news is the worse your side effects, the more the doctors REALLY want you to keep taking Erbitux because they have a belief it will be more effective for you. I have lots of Erbitux side effects, including some of the more bizarre ones, so I am really trying to stay on the drug. I finally had to take a break from the chemo for the last two weeks, just to get some of my skin issues healed up before continuing. My doctor encouraged doing the break.

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

and bilirubin have become my nemesis lol I am so over them all!!!! I hope the Erbitux continues to work for you!!!!

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

because the dr when I asked about the nasty side effects she said one patient she has isn’t having any and it’s working well. I just don’t think any of them are something he wants. He can not take Irinotecan he got pancreatitis and very sick from it, also folfox is better with his crazy high liver enzymes. If for some reason  folfox doesn’t work he could try it then.

abita's picture
abita
Posts: 642
Joined: Dec 2017

I have also read that there isn't a scientific basis for the belief that the rash indicates it is working. My doctor has never said this. A nurse and a dermatologist has said this to though. I don't want to jinx myself but while I do have a bit of the rash, i was very happy with the progress my scan after 4 treatments showed.

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

it’s working for you!!!!! That’s all that matters to me!!!

abita's picture
abita
Posts: 642
Joined: Dec 2017

thank you!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Have a great trip with the kids, Ruth. You need this break, you don't seem to get one. I hope your hubby takes this round of chemo smoothly without much of side effects!

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

i am leaving from the Manhattan port terminal I will wave to you! :)

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

I'll be waving back! :)

SoCal42's picture
SoCal42
Posts: 57
Joined: Jul 2017

This is the study that started that line of thinking:

https://clincancerres.aacrjournals.org/content/13/13/3913.short

https://www.spandidos-publications.com/or/21/4/1023

It wasn't a huge study, and it's about ten years old now, so a lot more people have taken the drug since then. But if this is not a research priority, or there's not funding for such a study, there won't be any new information.

Annabelle41415's picture
Annabelle41415
Posts: 6210
Joined: Feb 2009

First, enjoy that vacation.  It will be a nice get away for you and the family to get some relaxation and fun.  Second, wishing you hubby the best on his upcoming treatment.  It sounds like he's been through a lot the last couple of months, so I'm hoping that this new treatment works for him.  I'm sorry that he's had all these issues, it has to be very difficult to go from one thing to another.  Thank you for the update and let us know how he is doing once he starts again.

Kim

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

its been a rough few weeks, I really need a life break for sure! I hope you are well!!

Trubrit's picture
Trubrit
Posts: 4846
Joined: Jan 2013

It must be horrible watching him suffer so much.  

I hope you have the best of time on your vacation. You certainly deserve it. 

Tru

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