The Results are In

Tell your husband that

THE PORT IS WONDERFUL!

The port is a truly wonderful thing.  Once you get used to it being in there, and chemo starts, he'll realize what an absolute blessing it is. Especially if he gets to witness someone getting their viens accessed, or even people with a Pit line. 

accessing the port is a doddle. He can ask for a Prescription for some Lidocane gel, which he can rub on about an hour or half and hour before hand, and if the port is close to the surface the needle just pops right in. I never felt more than a tiny prick, even less than when I get blood taken. 

Being a man, he won't have to worry about bra straps. Mine ran right across my port, so I went pretty much braless for the duration. HA!

I am happy that things are on the move for your husband. You will be surprised how much ease of mind you will feel once things get going. 

Now with the radiation, I don't mean to be a party pooper, but be aware that some people (like myself) experience hard times. Other breeze right through it, in fact from what I've been told, most people have no probelms. I just think its good to be aware that it could be a difficult time, then if it is, you're not thinking that something unusual is happening. 

I did the radiation and 5FU hook up for six weeks. I was worried stiff about being hooked up to the pump continuously, but it ended up being no problem at all. I slept well, it didn't get in my way really. The pump broke once, but was dealt with. 

I hope you conintue to join us and let us know how things are going. Ask any questions, about anything. You know we don't mind the embarrasing stuff, its all part and parcel of Colorectal cancer. 

Right, go on and tell hubby that the Port will be his friend. (I watched a several nurses trying to access a ladies vein for niegh on half an hour, once. I thanked the good Lord for my port, that day) .

 

One Day At A Time

Hi Cammie, I'm glad you've been getting results and appointments so quickly.  My husband had 6 months (12 rounds) of Folfox last year.  He did not have radiation since he had surgery to remove the tumor in his colon before chemo.  5Fu is part of the folfox cocktail.  He had an infusion every other week and then went home with a 5Fu pump for 46 hours.  He is now on Foliri, again with the 5Fu pump.  If your husband does not have oxaliplatin in his chemo cocktail, he may not have many side effects. I'm not familiar with the 6 week schedule.

There are many people here who can give you good advice.  Good luck

Linda

annalexandria said:

Hi Cammie,

very glad to hear your husband won't have to be dealing with further spread!

I was wondering about the 6 week schedule...is that for the radiation?  Most everybody that I know has been on a 6 month schedule for chemo.  Maybe 6 weeks is something new, but since he's getting a port, I assumed he would have a chemo infusion pack that will be attached on day 1 of each cycle, go home with him, and be removed two days later.  Most do this once every 2-3 weeks, for 6 months.  But maybe because he's only doing 5fu it's different.  Most here have done FOLFOX (which adds some other drugs to 5fu).

Did they tell you what the infusion process would be like?

At any rate, you can tell him the port will be saving him from a lot of unpleasant pokes.  Chemo can break down the small veins in the arm, making it difficult to access them for the infusion.  The port is one quick stick and you're done.  He should ask for some numbing ointment (lidocain).  Applying that to the area one hour before access makes it almost pain free (the needle looks giant, but it really doesn't hurt much at all when the ointment is used...it's just best for him not to look while they do it if he has a needle phobia).

As far as how he's going to feel, he's bound to have some side effects, but everyone is different.  Some people work through chemo, others (including me) are pretty sick for at least part of the process.  IMO, the key is to take the meds they give you exactly as directed...don't wait until the side effects hit.  It's very difficult to play catch up once things get bad.  My experience was that I didn't feel too bad while infusing, got pretty sick for about 5 or 6 days after the pump was removed, and then started to recover.  I usually got one week each 3 week cycle where I felt decent.  We made a point of planning little trips and outings, visits with family, etc, during that week.

I would also recommend keeping a close eye on hydration.  Make sure to have plenty of things he likes to drink available, and encourage him to drink as much as possible.  And if he does start to get dehydrated, call your onc's office asap.  They can usually get a patient in for an IV of fluids, and that can save you guys an unpleasant trip to the ER.

Just like me

It sounds like Cammie's husband will be on the same schedule I was, six weeks of radiation and six weeks continous hook up to the 5FU pump. 

Radiation every weekday, and you go in once a week to get a new bag of 5FU. They remove the needle and give you a new line, but you're never without it for the whole six weeks. Really, not as bad as it sounds. 

I actually did my six months FOLFOX before the chemo/radiation, but it seems Cammie's husband is doing it the other way around. 

CammieS said:

His schedule

As I understand things, he's going to be doing 5FU and radiation concurrently for 6 weeks, get a 4 week break, more chemo (2 days every 2 weeks), another break, surgery and more chemo (2 days every 2 weeks).

He's the kind of person who needs to be busy, so we'll set up his home office space better -- a new chair and a bigger monitor are necessary. He'll be able to work in his pajamas and rest when he's too fatigued.

I'm feeling optimistic about the port. His bruise is so swollen and ugly from the dye for the CT scan.

I'll ask about lidocaine cream and I'll probably work up some kind of checklist for everything. Yes, i'm one of *those* people. When everything else is out of control, it will help me feel a little better.

Well, that's interesting to learn.

They must be changing things up a bit based on newer studies.  And it sounds like they are skipping the oxiliplatin all together.  Tell him from me that is awesome, as it's a platinum based drug that has wicked long-term side effects, without improving prognosis all that much.  When I learned more about it, I wondered why they even gave it to people.  Sounds like maybe they are starting to leave it out, which means he should have a way easier time of it, esp after he gets done.  Good!

Trubrit said:

Me again

I bet he goes on the Oxaliplatin after the 5FU radiation. After his break. It looks like he is on the backward schedule that I followed. Surgery, FOLFOX, 5FU/Radiation. 

 

Well, boo.

I hope he doesn't have to do the oxi!  That stuff sucks, imo.  Esp for a 5% increase in prognosis.  I guess every little bit counts, but those platinum-based drugs are awfully harsh, even compared to other chemo drugs.

lp1964 said:

Oxalyplatin will probably...

...start after radiation is over. I did Xeloda (5FU in tablet form) during radiation, then 3 rounds of Folfox while waiting for surgery for 10 weeks which now say is the most ideal time. It was for me since there was no living cancer cells in what was removed. After surgery I did 2 more Oxalyplatin then only Xeloda, because the neuropathy was getting very bad. 6 months of chemo total is the standard. I liked the Xeloda pill, because I hated the pump. Actually I did the whole thing with the PIC line which I didn't mind. The worst thing for me was the way Oxaliplatine made me feel. No usual side effect, but I felt like a poisoned rat. It is doable though and there are people here that did a hundred times more of it. We are the most resilient people. God bless you all.

Laz

That is awesome

That is awesome news!!!!!!!!!! Congratulations.