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NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

Not even sure what to ask or say.  This is happening very quickly, just diagnosed out of the blue.  Surgery coming up shortly, the whole thing will be less than 6 weeks.  Right now just concerned about the surgery and recovery time, with finders crossed that it is not too far.  

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

But I am guessing it is in play for next week's conversation.  Guess I will see.  

It seems (not confirmed) that I will be on the two days on, 12 days off, which looks to be the FolFox thing that people have mentioned here.  Googled that term and saw it is 2 and 12 and used for this type of cancer, I am a regular Sherlock Holmes.  :)  

I guess by June probably would have had 3 treatments give or take, though from what people say it looks like the side effects can hit at any time, so being 2 or 3 treatments in then reacting...well who knows.  But I am not going to scratch off June based on what you said, though I got a feeling not happening.  (Will be about a 5 - 6 hour plane flight out of the U.S., but I will find out more and see how bad it could be.)

That is great news about the May trip, should be beautiful. Bring a camera and good lens :)  Your April tests will be fine, I am pulling for you, cannot wait to hear it is all good and your trip is a go.  

John212's picture
John212
Posts: 116
Joined: Jan 2015

If your case turns out to be similar to mine - and so far it seems to be - you'll probably have a couple weeks or so to recover from your surgery and the chemo regimen will likely start up about 5 or 6 weeks after the surgery. We put my port in about 3 weeks after surgery. I had to put off the start of chemo for one cycle because my surgical incision developed a small infection and the onc didn't want to start up until I was off the antibiotic. 

When i asked about exercise, my onc told me to do as much as I could, but to avoid the gym if I could because it was flu and cold season and I might be less resistant to it if the chemo affected my white blood count. He also said that travel depended solely on my sense of strength, though he said that he'd give me a surgical mask to wear on a plane if it happened that my white blood count was low. It never dropped down much at all, and I made a three-hour plane trip in between cycles 8 and 9. I also made a weekend road trip after cycle 5 (wasn't going to miss my son's college graduation if I had to go on a gurney). Everyone reacts to the chemo a little differently, so pay attention to how your body responds to the first few treatments. That will tell you a lot about how well you might be able to tolerate any scheduled travel.

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

One of the things of concern (not real major) is that I know there is the possibility of being a bit more susceptible to getting sick, so thanks for that information.  I have been wondering what may be allowed or not.  For instance, going to a ball game may not be the smartest move (?)  But it sounds like it is somewhat count dependent, coupled with a bit of discretion.  

Was the port something difficult to adjust to?  I was told, briefly, that pills and injections are options, but all the pros and cons will be gone over in detail.  Not sure if there is a clear choice, but I will not be penny wise and pound foolish in this.  In other words, though pills sound inherently easier to deal with, if the port is the proper move I can deal with that also for 6 months or so.  

Glad to hear you made the graduation, I like your drive :)  

Will definately keep an eye on how I feel.  Right now I am still trying to figure out how hungry I am, how tired and the rest.  I try to do some things, and can get by, but there is a bit of a creeping tired and learning curve in this all.  There is something interestingly surreal about it all.

John212's picture
John212
Posts: 116
Joined: Jan 2015

If you're going to be treated by infusion - and that's the case with FOLFOX - then I think the port is definitely the way to go. The drugs you'll be getting, at least some of them anyway, are caustic and can harm the veins in your hand, where IV infusions are usually set up. The port will be tapped into a large vein in your chest so the caustic nature won't be an issue. I rarely noticed the presence of the pump needle once it was in the port, and I'm a guy who used to have to lie down to get a blood draw to check cholesterol! My mother is now on chemo because her breast cancer from four years ago metastasized last year and she got a port installed after her first treatment. The drugs burned out one of the veins in her hand - which can be more fragile as we age.

You'll probably have blood workups weekly or bi-weekly, to check on things like your white blood count and 40 or so of its best friends in the blood chemistry world. This will allow your doctor and the team to monitor how your body is tolerating the chemo, so there should never be any question about where you stand on that sort of thing. I'd say that a major league ballgame would be a terrible idea with a low white blood cell count, unfortunately.

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

 are caustic and can harm the veins in your hand

Hmmm, somehow this cancer thing is turning into something not as much fun as I thought it would be Tongue Out  Point taken, it does certainly sound like the correct move based on what you have said.  I got real tired of feeling like a pin cushion rather quickly, more so when they had trouble accessing the veins and having to do multiple sticks.  Can they draw bloods from the port?  That would be great.  Guess it will take a little getting used to for showering and the rest, but it sounds like the ultimate easier route.

On the ballgame side of things, my head knows that is going to be off the table (in all likelihood), which includes a chunk of the NFL season starting in August.  I am guessing I am probably going to avoid things until November, if my chemo is over the beginnging of October.  

Thank you again for your insight, and best wishes and thoughts for your Mom 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

Loved the port. So much easier than having veins punctured every other week. 

You're a man, so you won't even have the bra strap problems. My port was right under a strap and was not at all comfortable. I did the 60's hippie thing. 

I wore a surgical mask to church once, but it was soooo hot under there. My white, red and platletes all tanked, so I pretty much stayed away from people. 

Depends on your Onc how long they keep the port in after treatment. My Onc wanted mine out after my first clear scan. Others on the forum have theirs in for a year or more. 

Like John, I kept a record of everything. Blood pressure, temp, weight (yuk), BM's, all of my side-effects. I had two notebooks, one I kept as a journal (along with a video journal), and one filled with notes and questions to take to my Oncologist appointment. 

You really seem really up on everything, which will take you a long, long way for many, many years. 

Sue - trubrit

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

I do have strap problems, none of my wife's bras fit me properly and I have to adjust them all..;)

Sounds like the port makes things easier overall.  Just need to get psyched up for that next step, but eveyone filling me in ahead of time is a big plus, less of a shock.  The blood count issue sounds like the big wild card in it all and how it will affect things in terms of interactions.  It sounds like it is something that is probably in play between treatments if not longer?  In other words, after the first two days, the blood count is an issue until the next treatment and for x days (?) after last treatment.  That could be a big adjustment depending on how cautious I need to be.  From what you and John mentioned it seems to be more than just be careful type of prevention move and something to take more seriously :(

I need to set up the journals - seems to be a very good idea.  Set up something in my phone so I can always access it.  

Saw you mentioned the lidocaine prescription in another thread, really like that tip.  

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

I started, along with a written journal, a video journal. Oh, it is so interesting to go back and watch them.  I thought I was doing quite well during chemo, now I go back and I look like Hell. HA!  

I used my iPhone (which is not a phone any more but a great camera) for my videos. I have them of me getting my port accessed, my chemo infusion, my blood infusion.  Now it is all behind me (I hope) and the videos are 'fun' to watch. 

Sue - Tru

 

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

With me, so maybe I will try your thing.  Bought the iPad along to have photos of friends and family during the stay, some games, some music.   Figure I will be bringing it to appointments also.  Apparently it would have been real amusing to have video of me when I first woke up in recovery and then also when moved to the room.  Glad it did not happen Tongue Out

 

I am now convinced I am going to need to sign up for MLB.tv, looks like I am going to have time to watch some more baseball than normal the next 6 months or so Cool

sflgirl
Posts: 220
Joined: Jan 2015

That is a perfect explanation for this new feeling.  I am just a little ahead of you, had colon resection a month ago and had a port inserted two days ago and chemo starts tomorrow.  I won't lie, it's a weird feeling but all the good support and info from the folks here that have experienced this makes it seem like the best idea. 

Wishing you the best,

Andrea

 

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

Seems to be the only word that makes sense.  I am now about 10 days out of surgery and still not quite sure if anything in all this is real.  It simply cannot be.  Just so strange.  And so quick.

Hope the chemo session went well for you.  Guess we will both be here discussing things and helping others.  Good board.

sflgirl
Posts: 220
Joined: Jan 2015

Quite a long day, 10 hours at the hospital.  They stuck a big needle in the port.  Ask for the cold spray before the stick, it makes it very bearable.  Others here told me to do that thankfully.  They put me on Folfoxiri and Avastin.  Wasn't really expecting that, thought is was going to be Folfox.  The other two drugs added 3 hours to the infusion time.  Got the pump last night with 5fu and now 24 hours in.  Running a fever and not hungry.  Thought I would feel better today but not in the cards for me I guess.

I'm with you, still can't figure out why.  But there is no answer to that. 

I go to Cleveland Clinic, here is a site that has been helpful to me as a novice.  http://chemocare.com/chemotherapy/drug-info/default.aspx#.VOeWrDd0zIU

Best to you.

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

Someone else mentioned the Lidocaine and you mentioning this are both really helpful.  Thanks.

I was initially thinking a couple of hours two days a week and now looking at what people are describing I was a bit too optimistic, I saw the pump issue mentioned elsewhere and it looks like part of the infusion is 22 hours on a pump.  Will know more next week I hope.

Hope you feel better quickly and can adjust to this qucikly.  Thank you for the link, added to my bookmarks.

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

This is pretty much what my needle looked like for the port. Nasty, don't you think!!!

If the port is in properly, the skin is really thin across the top of the port, and you just feel a little prick when it is inserted, so no big deal. 

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

Frown

 

Kind of strange how some things make me go "Urgh" a bit more.  I think that one does.  I am also not really looking at my incisions and so forh. Kind of weird looking that one time I looked, going to wait again.  Maybe when they dissappear a bit and I can start working out again I will take a look.  The swelling and bloat is not pretty.  LOL.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

2 years from my original diagnoses and it still feels surreal to me. Cancer has turned my life upside down and it still continues to do so. Even if things were exactly the same as they were before diagnoses they wouldn't be because I'm different. This brush with death changed me, I think in a positive emotional way. I do feel more grateful, calmer and in an odd way happier. On the flip side I'm worried my body won't cooperate and I will physically crash. It is a surreal time indeed. I'll let you know if it ever goes away...

Easyflip/Richard

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