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Seeking answers for my dad

AmberHayes87
Posts: 1
Joined: Nov 2015

Hello, I am out and about trying to find answers to my dad questions.

A month ago we took him to the ER, they found a tumor blocking his colon.

He was admitted, had a biopsy and emergency surgery to have the tumor, lymph nodes, part of his small intestine and apart of his abdomen removed.

Surgery was a sucess, he was in the hospital for over a week, came home and slowly got back to his normal routine. 

He seen his oncologist this week and she had mentioned that the tumor was stage IIIB colorectal cancer. 

Her concern was his chances of recurrence,  she gave him a 50% odds of it coming back through his blood.

She offered him the oral chemotherapy treatment plan.

Xeloda 500mlg 6 cycles 2 weeks on 1 week off, starting immediately.

His is scared! He weighs 108 lbs at 65 y/o and has COPD

He would like to hear from other people that have taken this form of chemo and what they experienced.  The side effects are making him second guess if he even wants to do the chemo.

 

Any insights, advice or first hand experience would be greatly appreciated so that we can prepare ourselves for the road ahead. 

Thank you!

Sue_2015's picture
Sue_2015
Posts: 19
Joined: Nov 2015

Hi Amber, sorry for the situation you and your Dad are in.

I just recently started Xeloda (although while I was having chemo infusions, 5FU was part of my chemo "cocktails" for several months.  Xeloda is the pill form of 5 FU from what I'm told.)  I'm 5'5" and weigh about 138 lbs and am 62.  I know the dose they give is sort of based on a person's weight, height, etc.  I'm told that some people had to cut back their dose of 3000 mg a day to 2000mg because they developed side effects and the lower dose made the side effects stop. (possible side effects such as nausea and/or diarrhea and the hand/foot syndrome.)  My dose is 3000 mg a day, taking 1500 mg after morning meal and 1500 mg after evening meal, on a full stomach, with a full glass of water. (That last part is VERY important...on a FULL stomach with a Full glass of water.) 

I can't speak to the COPD you mention, but the 500 mg your Dad has does sound like a very small dose.  The only side effects I had were some peeling of the skin on my feet and  (especially my toes) turned very dark in color.  I was on 2 weeks then one week off.  During the one week off, the feet issues cleared up and went away.  Currently I'm off all chemo because I'm having a procedure next week and my Oncologist wants me off everything prior to the procedure.  After the procedure I'll go back on the Xeloda and was told that I might be on it for years as a "maintenance chemo." 

I wish I could tell you more.  Good luck and best wishes,

Sue

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I am sorry to hear about your dad. You must be a wonderful daughter, to come searching for answers to help him. 

Having chemo certainly ups the odds of catching anyhting that was missed during the surgery, even though it was quite extensive. 

I myself started at Stage III B. Had surgery, chemo and radiation and made it nine months NED (no evidence of disease) and then a tumour was found in my liver.  Without the treatment, I am quite sure the liver tumour would have grown quite rapidly, but with treatment, it was kept at bay until it was discovered. 

I am not telling you this to frighten you, but let you know that recurrance does happen, and quite frequesntly. 

I personally had the FOLFOX + 5FU treatment, so cannot comment on the Xeloda. There are many here who have had it and are on it. 

Good luck to your dad as he makes his decision. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

For obvious reasons, but welcome to the board.  It is a good place.

I was diagnosed as IIIC (after surgery) in February.  Then went through 6 months of chemo (every two weeks, FOLFOX, infusion, then two days on the pump.)  I was told that without chemo the chances of recurrance was about 50%, with chemo it drops to about 25-30%.  Try not to get too hung up on the stats.  My chemo was different, so I cannot speak to the effects or stats there.

I would try to make sure he maintains weight.  The chemo I had made me lose my appetite.  I was fortunate in that the nausea was not much for me and headed it off with anti-nausea pills, but that I often did not really feel like eating.  So I found things that worked for me to do so.  Usually this was more the first 3-5 days of each cycle, and the second half of the cycle I would eat more and get back any weight I lost

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

Sorry  to hear you and your dad are having to deal with this.  I was diagnosed with Stage 4 rectal cancer with liver mets in April.  I finished up 9 rounds of Folfox plus Avastin last month.  Although the  treatment shrank the tumors, my surgeon  decided  not to operate at this time and we are are going with a non-operative management approach.  I am now receiving radiation treatment five days a week and wear a 5FU infusion pump  five days a week also.

You seem concerned that  because of your dad's weight, COPD and his age, that he may suffer the more severe side-effects.   I am 71,  weighed 79 pounds at the start of treatment and  as a former smoker have what is described on the last CT scan report as stable severe diffuse centrilbular emphysema, plus "multifocal atherosclerotic disease throughout the aorta and its branches."  I too was worried about what effect the chemo would have, and more recently the radiation.  I'm happy to report that so far, I've escaped the majority of the nastier side effects, including the nausea. My main problem was a low white blood cell count which  delayed treatment a few times and made it necessary for me to  take Neupogen shots on a regular basis. The other  side effects I had, like the alternating diarrhea and constipation   were manageable  with a few diet changes, a box of prunes and a bottle of Imodium.  Much to  my doctors' surprise, I actually gained weight, am now a whopping 86 pounds and except for the fatigue that hit me  at times during the  chemo I felt pretty good and was able to stay active,  didn't even have to miss a single yoga class!  I'm only a few days into the  new chemoradiation regimen and am hoping this five week treatment goes as smoothly and  keeps the cancer at bay and the tumors  shrinking for a while longer, but time will tell.

All this is just to say that  I think the  side-effect warnings are a worst-case scenario. As you have probalby gathered from  reading about the experience of the  people here, some people  have a horrible time with side effects while others don't.  Our bodies all react  to treatment differently. I hope your dad is one who suffers  minimal  ill effects. If he does opt to go ahead with the Xeloda and does have side effects, make sure he stays ahead of them before they get severe, and that he  lets his  doctor know so she can adjust his dosage if necessary. Good luck to you both.

Grace

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

Hi Amber, Sorry to hear about your dad, and I hope that things go well for him in treatment.  I am currently taking Xeloda oral, and my dose is 1500mg twice a day.  I am heavier than your dad, but I have found this chemotherapy drug to be very tolerable.  I try to take my dose at the same time each day, mostly for consistancy.  I am taking a total dose of 3000mg, and have been on this for 28 days, with Saturday and Sunday off each week, as I am doing this in combination with radiation therapy for rectal cancer.  My is neoadjuvant (prior to surgery; aimed at decreasing or even eliminating the tumor).

Here is my experience:  I find Xeloda well tolerable, and recommend that your dad hydrate well each day (minimum of eight 8 ounce glasses of water).  I do recommend ten glasses if possible, and I am just sipping all day which makes it easier.  Also, take the Xeloda with a couple of crackers or something.  I found myself a little nauseaous at first, but that feeling did not last.  I think my trouble initially was that I really wasn't paying attention to my water intake.  Between the Xeloda and the radiation I had dehydrated a bit early on.

I hear some folks have diarrhea, but that has not been an issue for me, but I think also because I am taking some pain medications that normally cause constipation---so I think I have offset things there even steven....

Let me know how things go.  I hope this was helpful.  I have found and heard from my PCP and others that Xeloda is one of the easiest chemo drugs to be on.  If your dad does experience any diarrhea, just let the docs know early on. 

Glad I actually had an answer for someone!   i am new here too, but things are going well and my tumor is visably decreasing.  So, Xeloda gets a win win in my book.

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

I had chemo +radiation before resection. After resection,oncologist wanted more chemo.  Surgeon said it was;t necessary. 

With no more chemo ,following year  colonoscopy was clear-thus NED. Now 5 yrs later i'm still NED.  So ometimes it is hand to tell what to do.  Good luck to you and your Dad!!

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