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The Results are In

CammieS
Posts: 43
Joined: May 2014

After the MRIs and CT were complete on Friday, we celebrated being one step closer to finding out what was happening within my husband's body. On Saturday morning, we found out that the CT scan said that nothing had spread -- not Stage IV. We celebrated again.

Yesterday, we found out that he's Stage IIIb. While we still have hope, we're terrified of what's happening next. His port is scheduled for later this week as well as meeting the radiologist for the first time. Chemo (5-Fu) and radiation start on 6/2 and continue for 6 weeks, which I hear is pretty standard. The oncologist expects that he'll be able to go into work most days, and his job will allow him to work from home when needed.

The port has him freaked out a bit. He had read about chemo and radiation beforehand, but didn't learn much, if anything, about the port. He has a hard time with needles (which will change soon, I'm sure), and has a really large bruise from the CT scan. He's coming to terms with it, but I don't think he'll understand until later.

What can I expect during treatment? Are there any foods you recommend? I want to be prepared so each day is as smooth as possible. I know that there will be really shi**y days and days that are even worse. I just to make it all more tolerable and to have as many good days as possible.

Trubrit's picture
Trubrit
Posts: 4831
Joined: Jan 2013

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) .

 

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Hi, I'm Helen (age 44) and I finished my treatments,surgery last year and am now NED (no evidence of disease).  The port is a good choice, he'll be used to it in no time.  I forget mine is there (I get it out this July after my next scan).  It's so much better than getting the IV in your arm which can be painful.  Chemo is easy at first and gets harder as you get closer to the end.  I was able to work almost the whole time I did the first round of chemo, I took off toward the very end.  When I did round two with chemo and radiation, it was more difficult since I had already done chemo so I stopped working.  Going to the bathroom at the end of radiation can be terribly painful so it is important to use the recommended skin creams from the beginning.  Keep that area healthy and moisturized.  Avoid the sun being that it's summer and he'll be doing radiation.    Also there is lidocaine that you can put on to ease the pain if it gets bad.  Also you want to take care of hands and feet with cream also.  Eat healthy, fruits, veggies, the normal stuff.  I was big on brocolli sprouts, my neighbor put me on to them.  I also gave up dairy and sugar but that was just because of some of the reading I did.   Did he have his surgery before or after?  

LindaK.
Posts: 490
Joined: Apr 2013

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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.

Trubrit's picture
Trubrit
Posts: 4831
Joined: Jan 2013

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
Posts: 43
Joined: May 2014

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.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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's picture
Trubrit
Posts: 4831
Joined: Jan 2013

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. 

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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.

CammieS
Posts: 43
Joined: May 2014

I know that he's getting more potent than 5FU alone. I have to go through my notes to focus on the details versus a general overview.

danker's picture
danker
Posts: 1183
Joined: Apr 2012

I had the chemo pump continous for five weeks  while getting the radiation Mon-Fri. About week four I developed galoping diarrehea. LOMOTIL by prescription coped with the diarrehea.   Take it a day at a time, and realize you wouldn't recognise the good days if you didn;t have some lousy ones to compare them to.  LOL  Good luck to you both!

 

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

...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

janderson1964
Posts: 2215
Joined: Oct 2011

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

CammieS
Posts: 43
Joined: May 2014

I'll keep that in mind for the 2nd round.

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