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Beachlace's picture
Beachlace
Posts: 23
Joined: May 2013

I am soooo happy to have to found you all.  I was diagnosed on 3/27 with colon cancer and had surgery on 4/23.  It was stage 3a with 1 out of 9 lymph nodes invaded.  Next week I will have a port put in  (eeeek!!).  

Then on May 21 I begin 8 rounds of oxaliplatin which I will have infused once every three weeks.  Then I will take Xeloda orally for 14 days.  There is a week off in between. The whole regimen will take 6 months.  

Anyone else gone through this regimen?  Im hoping to continue working through it if possible. 

I dont think I have dealt with this emotionally and am doing that little by slowly.  I am 54 and have two teenagers.  I plan to be around to see grandchildren.  Right now I am dealing with post surgery constipation with colace, miralax, lots of water and veggie/fruit nutriblasts in the morning.  So far, Im not regular yet.  

 

Kelley

 

thxmiker's picture
thxmiker
Posts: 1216
Joined: Oct 2010

Welcome!  We are glad that you are here, and sorry that you have to go through this.

 

The port is no big deal. You will not be able to use that arm vigerously because the port will abrade the chest. (Else the port makes infection and ease of chemo much safer.)  

 

Everyone is different on chemo.  I was able to work through the first six months of chemo. I did slow down after round 3, and would take several days off ater each treament due to nausea and exhaustion. The second round of chemo (3 years later) I retired. 

 

Nutrition and Hydration are the most important things during chemo.  Most complication come from lack of nutrtion and lack of hydration. Get on a sensible diet like the Zone or the Med Diet. Juicing and exercise  will help a lot.

Best Always, mike

 

PS  Keep in touch with your progress.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Thank goodness for the port so you don't have to be stuck in your arm so much. Your treatment sound fairly similar with the exception of the pills. After big treatment  I would usually go home with a pump that i worefaor three days. You'll find out this can be one bigroller coaster ride, up one day and maybe down one day. The good thing is your age and it looks like they may have caught things early. Pray all goes well with your treatments. Jeff

fatbob2010's picture
fatbob2010
Posts: 385
Joined: May 2012

Kelley,

Glad you found us...Sorry you had to find us.  Did not have the same Chemo that you are anticipating.

Emotionally, it is a roller coaster for me.  My first hurdle was to stop living like I was soon dying.  Most days I can get my head around it, but, other days...not so smooth.  Taking one day at a time helps me.

Like Mike I have been able to continue working, only because of an understanding employer.  Colon resection was rather quick and smooth recovery (about two weeks).  After the liver resection, three years later, it was more challenging to get back into the swing of the office routine.  

Once again, welcome to the board. There is a lot of experience on this board that is helpful to many.

Art

Beachlace's picture
Beachlace
Posts: 23
Joined: May 2013

I can see that it's one day at a time even now.  One day Im full of energy and the next...not so much.  I have a private therapy practice so I can make my own hours.  Hoping to work 2-3 hours per day to keep my hand in the game until I am back to full speed.  

 

Its so great to have others in my lifeboat!!!  Thanks!

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

I am on Oxy, xeloda, and avastin.  the worst thing i found is the oxy because it makes my hands and feet go numb, Neuropothy, and you are very sensitive to cold.  Right after the infusion i can feel it kicking in and i cant drink anything cold because it is like swallowing glass for about 2 weeks.  you will learn to love that 3rd week when your not on anything because you will feel a lot better and you will be able to drink cold things again:)  that might sound weird but i miss having ice in my drinks:)  I also know for me that i can get kind of emotional so when your feeling sad now that it is ok and that your not alone, we have all gone through rough patches! 

Zach

db8ne1's picture
db8ne1
Posts: 90
Joined: Feb 2013

Sorry to hear you joined our club - but welcome anyway!

I was diagnosed 12/7 (T3N1M0). Daily radiation and daily chemo (5FU) 1/7 - 2/13 to shrink the tumor (successfully!). (Port installed on 1/7 too.  Port is no problem. Carrying the chemo pump around was an inconvience - but not bad).  Surgery on 4/11 to remove colorectal tumor and 15 nodes.  Got a "twofer" as they made a last minute decision to remove my grapefruit sized uterus and one fallopian tube damaged by radiation. (I had numerous, large fibroid uterine tumors - that I've know about for a long time). Removing the oversized uterus gave the surgeon clear access to the colorectal tumor.   Path came back clean. Yeah!  Radiation worked!

I start FOLFOX (5FU, Leucovorin, Oxilaplatin) next on 5/15 - 10 rounds every 2 weeks.  Not looking forward to it.  I'm still out on short term disability for the surgery.  I worked full time during chemo/radiation and plan to work full time during FOLFOX (I hope).  Not too encouraged after reading about the possible side effects, though.

FYI:  I feel like there will never be a "Normal" going forward.  I really haven't had too many issues - but I think any minor issues I have will resolve to a "new normal" going forward. From what I've read, it can take a while (anywhere from a couple of months to more than a year to regulate your intestines again).   I must say, though, that I'm tired of being tired!

Everyone is different.  I do log what I eat, how much my fluid intake is, output, etc.  (I'm anal - which is probably why I have this type of cancer...Laughing). It does help me determine what my triggers are.

I hope all goes well for you during your treatment.  Keep in touch and let me (and us...) know if you have any questions. 

J

Beachlace's picture
Beachlace
Posts: 23
Joined: May 2013

Nice to meet you all and I will keep you posted.  

J:  I am hoping to work at least part time during the FOLFOX.  Let me know how it goes for you.  

zach:  I have great support and this has been a roller coaster of emotion for sure. Mostly I am positive and not even entertaining not being cured, although I know it's a possibility.  The onc said if the cancer were to recur, it usually does within 2 years.  No one knows the future and each patient is different.  

 

Happy to share my journey with folks that understand.  

maglets's picture
maglets
Posts: 2404
Joined: Jun 2006

Hello Kelley...I too am very happy that you found our group....I remember lurking and reading for a long time before I introduced myself....too shy I guess .  I always think it is nice for a newbie to meet a really old timer.....i started with stage 3 in 2005 but moved to liver mets .....resectioned twice but the very good news is I have been NED for almost 5 years.  I have done oxy and i think you will find it has some very nastly little ways about it but nothing you cannot handle.  The xeloda is usually fairly easy to tolerate......we will be here when you get started and help with any questions you have.

I hope you will forgive the intimacy of what I am about to say about constipation.....we kinda have no rules here about intimate bodily functionsLaughing easier that way.  Was there a time before surgery when you regularly passed your bowels?  For instance if it was morning can you refocus on that time?  I used to drink coffee every morning and then off to the washroom....after surgery I couldn't handle the coffee so I would have a cup of hot water......then go to the washroom and use a glycerine suppository....wait for a wee bit .....try putting both feet firmly on the floor and leaning forward from the waist so that you are closer to your thighs....sorry kelley maybe too graphic......

 

anyway welcome dearest girl......

still going strong after all these years.....

have a big hug....maggie

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

You have received lots of good info so far.....so I will add my experience. I had a similar regimen to yours.....3 weeks after surgery I began oxyaliplatin and xeloda (2 weeks on and 1 week off). the second treatment they added avastin.The treatment was for 6 months and then liver resection. I am stage IV, diagnosed Nov. 2011. 

The ups and downs are normal...when I start on the downswing I try hard to think what I been here for in the past year and a half. Aside from my illness our family has had many proud accomplishments and new beginnings and I got to be here and share them with my children. I find the hardest part is when there is a new diagnosis, I need some time to process it and put it all in perspective.

You may have more questions when you start chemo, one step at a time. You need to recover from surgery and get strong for the next step. Any questions, please ask and again welcome. Enjoy your Mother's Day....~ Ann

 

 

 

 

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 4243
Joined: Feb 2009

I'm so glad you found us too.  I'd be lost if this board wasn't here and had no one to communicate with, especially people that are going through the same things that you will be.  So sorry that you had to find us, but glad that you are able to share your journey with us.  Constiplation can be a hard thing to deal with too, it's just one day at a time.  Getting the port inserted is no big deal and it's the best way to administer the treatments.  Make sure that you get a prescription from your doctor for the numbing medicine (sorry can't remember name, maybe lidocaine) that you put on an hour before the insertion into your port.  You will be going through a roller coaster of emotions.  This is a journey, but one you can get through, and stay on this board and we will help you.

Kim

LindaK.
Posts: 313
Joined: Apr 2013

My husband has had extreme constipation from the Folfox and 5FU treatments.  Be sure to keep things moving, sounds like you're taking all the meds he's now taking.  He had 5 full Folfox treatments and ended up back in the hospital with an obstruction due to the cumulative constipation.  No more oxaliplatin for him, only 5FU from now on.  He's had 2 treatments of just the 5FU and 5 to go.  He's had less side effects with just 5FU, but they always say everyone is different.  Just be sure to keep your oncologist informed of any side effects, they can adjust the meds easily. 

Good luck with your treatments...

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Hi and welcome.  I was also diagnosed as Stage IIIa in 2010.  I have been through the journey that you are about to go through.  During that time I continued to work and I was raising my 7 year old grandchild.  I only took off from work on the day that I had chemotherapy.  A few of my close friends had gone through knee replacements, bypass surgery and I had cancer.  I told them that we were all getting patched up to be the bionic women of the future.  All in all this web site has terrific people on it and I am thankful for them.  I only pray to help someone else as they have been there for me.  In October, I will turn 60 and I truly enjoy each day.  We are here for you.  Have a blessed day.

annalexandria's picture
annalexandria
Posts: 2212
Joined: Oct 2011

glad you found us.  This is not the easiest path to walk, but it can be done.  Sounds like you've got good real-life support which is great.  As for the chemo itself, I did oxylaplatin, and as Zach says, the neuropathy can be tough.  You might want to ask your doc about taking glutamine powder.  Where I got tx, that was standard protocol for chemo patients to try and reduce this particular side effect as much as possible (it can be permanent, so it is important to not let it get too bad).  Good luck, and keep us posted!  Ann Alexandria

Scubadan (not verified)

4 & 1/2 yrs of stage IV4b Colon CA met to the liver. 23 yrs of direct patient care as a critical care metropolitan paramedic both in and out of the hospital. 97 cycles of 3 different types of chemo.That's Scubadan.

 Search, read, learn about your condition, meds, and treatments. Then put it away because most of it won't apply to you. Know what to ask your doc. Statistics put people in a box.  They didn't make a box exactly your size. The port is a breeze, just make sure the infusion nurse does a good sterilizing scrub before inserting the access. Blood infections are serious. You have control.  Know the order of the infusion drugs.  If you get 5FU it is the most important in order. It has a half-life of only 12 -20 minutes, so the loading dose to bring your blood levels up to theraputic level must be followed within a few minutes by the maintenance infusion pump.

Yes, it's a little rough to start with, and you'll have some bad days, but if you sit on the couch and feel sorry for yourself and be sick, guess what, you'll be sick. Own it and move on.  Head up, shoulders back. Be the one who whips this thing.

janderson1964's picture
janderson1964
Posts: 1577
Joined: Oct 2011

Scubadan you have a grat attitude much like myself. That is a big part of the reason why we are still here fighting.

BTW I am 7 1/2 year stage IV survivor.

LindaK.
Posts: 313
Joined: Apr 2013

That is interesting to read about the pump hook up.  My husband has the pump.  One time we waited 90 minutes for the stupid Lincare (home health care) nurse to arrive to hook one tube up.  I can't clearly remember if they gave him the bolus before we waited, but I'm pretty sure we did.  My husband would be so mad if he found out that treatment didn't have the desired effect.  I will ask about that tomorrow at his next treatment.  Thanks

Trubrit's picture
Trubrit
Posts: 1427
Joined: Jan 2013

I am also stage 3A with one lymph node involved.

I have just finished nine rounds of Oxaliplatin, and I won't lie, its been a rough ride, with fatigue, chemo brain and dizziness being some of the worst side effects I have had.  Everyone handles it differently, this is just my list. 

I had my infusions once every two weeks, coming home with the pump and 5FU. 

The port is a REAL blessing. Its uncomfortable for the first week or two, then it becomes your friend.  Ask your surgeon if he can place it just a little left of your bra strap. My bra strap goes right over the port, so on hook up days, I'm bra free. Which will be odd, as i'm about to have the port hooked up 24/7 for six weeks. I'm betting I won't want to wear a bra ever again after six weeks withouht one. 

You've found a great forum. So much support and love, with loads of information. Just remember, you are on your own journey. You won't folllow anyones here exactly, but everyone advice is wonderful (for the most part. HA!(

Good luck. Keep us updated. 

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