Hello, I am new to these boards. My husband was diagnosed with Colon Cancer in November 2004. He underwent surgical removal of the tumour and had 2/3rds of the transverse colon removed. The cancer had apparently moved to a lymph node close by but was too close to the main blood vessel for it to be removed as well. He went onto chemo within 10 weeks. This was intravenous 5FU. This completed after 6 months but there was a span of 12 weeks before he saw specialist again in which time the cancer had grown from 4cm to 7cm. More chemo required and so he was given intravenous 5FU and Oxaliplatin together for 6 months. This completed and 8 weeks later the tumour had grown to 8cms. He is now on ORAL chemo - Xeloda - which he has been taking for 8 weeks - It is taken 14 days on and 7 days off - He has 4 tablets per day, 2 in morning, 2 in evening.
My question to anyone out there who maybe taking this same medication is:
Do you have gut wrenching pain 45 minutes after taking the tablets. This happens mornings and evenings. Usually takes about an hour to go away. But most recently he has had 2 episodes of the pain staying with him.
He is also on pain patches to control the pain - very low dose.
I am aware that the pain is a side effect of the tablets but does anyone else have these symptoms with this medication as the information with the tablets say that patients have a better life while on it. Seeing him in pain is certainly not a better life.
When I did my regimens two years ago, they didn't really have Xeloda on the market, or enough studies for my onc to feel comfortable giving it to me. Instead, they put me on a "very aggressive regimen" of a triple cocktail given IV before and after surgery. Maybe it had to do with the staging or simply because my onc didn't know enough, or wasn't comfortable with, or didn't feel Xeloda would be effective for me in my case.
In any event, for your husband... I would let his oncologist know straight away. I'm sure it's perfectly normal, but NOBODY should have to suffer pain like that. His oncologist should be able to prescribe him something to take at the same time as the Xeloda, or right around to stop the pain before it starts. Being a chronic pain patient myself due to all the side effects of the cancer and surgery and radiation/chemo, I can tell you I have been told by many docs that it is much better to catch the pain rather than try to chase it and TRY to get it under control. Maybe if he took a narcotic pain killer at the time of the Xeloda, or 1/2 hour before it would work better for him.
Just food for thought.
Good Luck and please keep us posted. Also, welcome to the Board, although I am sorry about the circumstance. You will find there are MANY knowledgeable, warm, and comforting people on this Board. We are all almost like a second family. Please do not hesitate to ask us anything or lean on us for support. Again, Welcome.
I am sorry to hear of your husband's pain...you have already been through enough. I am currently on Xeloda myself. I do get stomach discomfort about 30 minutes after taking the pills - more like nausea and acid stomach feeling than pain though. I find that if I eat a BIG breakfast and dinner before takign the pills it helps a lot. I also munch on pretzels or crackers and that helps some too. (I am also on Nexium which does help w/the sour stomach). I started taking my evening dose just before bed time so that I can sleep through the nausea as well. Other than that the only side effects have been fatigure (likely from anemia) and VERY sore feet. Overall the Xeloda has worked much better for me than the Folfox regimine, which I had to discontinue early due to side effects.
I would echo CD's response and call your oncologist or your oncology nurse right away. They are usually quite helpful and should be aware of any side effects he is experiencing.
Best of luck to you and your hubby. It is a long road, huh?
Hello CD and Cats, Thanks for your advices. I actually posted an answer this morning but for some reason I am having problems getting it on the board. Before I go on, do I click on the first submit button at the bottom of this or on the second submit button this is why I am losing my post. When I press preview enquiry it takes me to a screen which tells me that I do not have permission to post as I am not signed in. I am a worry to myself sometimes.
Well I really am a worry as I just found out that one needs to leave the box ticked which I delete thinking it will remember my password so lets try again.
I just tried submit enquiry the first one and it came back that I was not allowed to post as I was not signed in. Sorry to be such a dumbo.
Now, I forgot to add in the original post that hubby takes Nexium, to calm the "reflux" and Dexmethazone to reduce the tissues surrounding the tumour in the lymph nodes. The tumour was pressing on the food pipe and stomach and not allowing food through without pain but with the above two medications all is well in the area.
In the last couple of days he has been having spasms of the hand and back which cause discomfort and he can alleviate this by pressing into his sides but this can be quite wearisome in itself.
I did mention that he was on narcotic pain patches which initially worked a treat (least amount of drug 25mg) but seem to wear out after 2 days but he does not want to change them until 3 days which is the instruction. He has now been given by his GP Ordine liquid which is for breakthrough pain but he is obstinate and refuses to take it saying that he can cope with the pain AS LONG AS HE KNOWS THAT IT IS THE TABLET DOING ITS WORK. Cats can you tell me if you know if this is how Xeloda works.
He asks you Cats how do you take your evening dose before bedtime when you have to take the tablets 30 minutes after completion of food.
He has mentioned the pain to his onc and local GP and makes notes in his Xeloda diary which the onc checks out every 2 months.
Anyway, any further information would be helpful, I will look at all the other posts now and see what else I can learn to help him.
Xeloda is just an oral form of 5-FU. It is a tablet form that gets converted in the body into 5-FU. For your husband to tough it out and suffer the pain of the side effects thinking that this is making him stronger to "feel" that the drug is working is understandable. However, there really is NO reason for him to experience more discomfort that can be controlled just to "know" that the medication is working. He can use imagery, picturing the cancer cells dying, but still taking medication to not feel one of the un-necessary side effects.
As for the Duragesic patch... most people DO need to change it every 2 days. It is up to your husband whether he chooses to suffer more than necessary. You can't make him take the medication... everyone copes with and deals with having cancer in their own way.
I didn't tell you my history... I am a Stage 3C (T3N2M0) Rectal Cancer Survivor. I do suffer MANY side effects as a result of treatment (radiation, surgery, original location of the tumor, etc)... I suffer chronic pain that requires narcotic and other therapy to reduce some of the pain; I cannot (since my original resection surgery) urniate and require self-catheterizing 6+ times/day; I suffer Erectile Dysfunction that is non-responsive to ANY medication, including syringes; I have been through multiple surgeries, chemo and radiation pre-surgical and chemo post surgically; I had 6/10 positive nodes even with the aggressive pre-treatment I received. I have been told by multiple specialists that this is permanent damage, and am finally beginning to believe this. I am 33 years old, 31 at diagnosis and was given a prognosis of 20-30% 5 year survival rate. I know, however that I am MORE than a statistic and continue the fight.
I give you and your husband a background of my story in hopes of having him realize that he DOES NOT NEED TO SUFFER while receiving treatment. The chemotherapy is STILL doing its job for him even if he eases some of the side effects, and he by NO means does he need to SUFFER through it. There are MANY drugs that are given during chemotherapy to ease symptoms (to stop vomiting/nausea/diarrhea/pain, etc.
I hope your husband will rethink his coping strategy to include another pain killer as part of his regimen.
Further question to anyone out there regarding my previous enquiry and Xeloda .
My husband is back in hospital - twice in 5 weeks with what they think is an infection. Previously I discussed his problem and treatment. He has for about 8 weeks had the severe pain 2 hours after eating which lasts for an hour but lately this pain has been continual. Sometimes so bad that it is awful to watch him go through it. He meditates to try and alleviate the problem. His Oncologist has now taken him off the Xeloda for 14 days as she says he has what is known as "sunburn" effect on the inside (foodpipe stomach intestines) Xeloda causing a burning sensation and when eating is ripping away at the tissue on the way down, and when he goes back onto the tablets he is to reduce the tablets to 1 morning and 1 evening. She has also taken him off Dexmethosone (antiinflamatory tablets). Has anyone else had these symptoms or heard of others using Xeloda. The pain is excruiciating to him that he has had to call an ambulance for the hospital.
I am off to visit him in hospital so will check back on the boards later in the day.
Lahpun (loosely transcribed - elderly person)
Dear lahpun, I am so sorry for what your husband (and you) are going through. I can't offer any advice on the XELODA as my husband was given FOLFOX. I just wanted to say hi and give you moral support. It's a long hard road we are on. Hugs ,Kathy
Hello Kathy, Thanks for the reply and your thoughts for us. My husband seemed okay when I saw him today, but when you have been married for 43 years you get to know a person fairly well and I thought that he was a little on the depressed side but trying to be strong for me. (My impression only). Again thank you for getting in touch. I have been scouring most boards and google trying to find an answer to his problem so I had better get back to it.
I DID experience severe stomach pains through my last cycle of Xeldoa. I found that it was probably what I was eating. I cut out hard to digest stuff like carrots, corn, lettuce...stuck to soft stuff like toast, pasta, etc. I don't know if that helped, or if it just got better because I was on my off week. I just started up my LAST (Yeah!) cycle of xeloda (3 pills, twice a day) and have not yet experienced the stomach pains. Last time they kicked in about midway through. I'll let you know if they come back. In the meantime, it can't hurt to try him on a soft diet - bananas, toast, pasta...NO salads, raw fruits or veggies, things w/skins... This is, of course, is no doctorlly/scientific advice. I would still be sure to let his colorectal specialist and oncologist know what is going on.
Good luck. This is SUCH a tough road I am wishing you both well.