The Colon Club

this my first time posting and I am afraid !
Don't know who to ask,would they think I was dumb?

mY Husband was recently dx with stage 3 colon cancer, He had surgery to removed tomor,6 out of 11 lymphnodes -positive
he will be staring will Xeloda for 3 weeks on, 1 week off, HE will also receive 2 hrs or IV INFUSION, he is paralyize waist down
We feel, one day of infusion and set up for 2 days with pump would be difficult. I am looking for support system for h is family
which in turn would support us, If I am in wrong group please advise me so I can advise his family where to go so they can
understand what we are going thru

Welcome to the board, even if I'm sorry you have to be here.
I think you're in the right place for support! Others with more direct experience than me (my friend is in another country) surely will chime in.
Best to you!

You are definitely in the right place.

Sorry to hear about your husband and that you have this journey. I was also a stage III with 1 out of 33 lymph nodes positive. Had surgery and chemo for six months. This was in 2005 and now eight years later am still NED (no evidence of disease).

You are in the right place, sorry that it is the right place...

scr1976,
It's okay to be afraid of cancer; we all are. But please don't be afraid of asking a dumb question here! When you start this journey, you are in shock from the diagnosis; the patient is usually weak from being sick or from surgery; the caregiver is overwhelmed; and the doctors -- and old-timers -- use all these phrases and abbreviations that you just can't seem to keep straight. Take it slowly, write things down --especially questions you want to ask the doctor, because you won't remember them if you don't -- and remember to breathe.

I'm a little confused about your husband's chemo regimen. You said he was starting on Xeloda (which is a pill), then he would move to a 2-hour IV infusion, plus a 2-day IV pump. First line chemo here is usually:
oxaliplatin (the heavy hitter) + leuocovorin + 5-FU (the one in the pump)
This regimen is called FOLFOX. All the drugs are IV, and it is typically given every 2 weeks.
An alternative to this is
oxaliplatin + Xeloda.
This is called XELOX.
Again the oxaliplatin is IV, but the Xeloda pills are taken twice a day for two or three weeks and then a week off, before starting over.
For me, the pills are so, so, much easier than the pump. Since they are available to you, I don't understand why the onc has your husband starting on the pills and then switching to the 2-day pump. I don't mean to second-guess your doctor, but I would ask for the easiest thing possible.
Best wishes, and again, ask away with any questions.
Dianne

Thanks for everyone who has responded to me.
He will be on Xeloda for 2 weeks on and 1 week off, every 3 weeks he will have the 2 hour infusion, instead of the 2 day pump as due to his being
on crutches and same survival rate being the same as the Fulfox.
I am trying not to be neurotic, but want to be prepared for possible side effects. Of course we are hoping they are minimal, but I have to be prepared.
I am taking a family medical leave during his first round. My employer wasn't very accommodating when he had his surgery, ending up spending 10 days
in hospital, then had to spend 4 1/2 weeks in rehab in order for muscle to heal in his abdomen so he could get strong enough to walk up stairs to our
apartment. I am trying to go to different websites, to prepare for changes in diet, side effects,& most important how to be supportive of him without
being overly protective.
I don't know if there is a particular thread to look for here as to what to have on hand, ( gloves, masks etc,) will I need them? when to avoid family
get togethers, so many questions, just not sure where to start?

I am optimistic for recovery but as I am sure every one here can understand we are just afraid of the unknown, which are the side effects

Hi there-

I am sorry that you and your husband are going through this but as everyone has already said you have come to the right place.

I am on the same chemo treatment that your husband is going to be starting. I am currently on my "off week" and will be starting my second cycle this coming Tuesday. You can search here for side effects to Oxaliplatin it is a tough drug. So far the cold sensitivity is the most common one and I was surprised how quickly it kicked in. Gloves are a MUST. Be mindful of touching anything cold including anything metal. Tha shower door handle really got me the first time! Heating his hands up, w/ warm water, warm air, hand Warmers makes the tingling go away pretty quickly. This lasted for about 10 days. Also the cold sensitivity will effect what he can eat and drink. The oncologist will explain this.

As far as the Xeloda, knock on wood I haven't had any side effects. The first few days I felt slightly nauseous and took an anti nausea drug but after about the 3rd day I didn't need it Xeloda can also effect the hands and feet with redness, blistering and peeling, but as I said so far so good I haven't experienced this.

Good luck to you and your husband. As others have said its all doable,

Kim

src1976 wrote: I don't know if there is a particular thread to look for here as to what to have on hand, ( gloves, masks etc,) will I need them? ...

This may not quite relevant right now, since I think you are asking about things to have on hand at home, but you might find some useful ideas after browsing through these threads

Things that are helpful to have with you in the hospital...

"take to the hospital"list

If you could take to the hospital what would it be?

===

Here are two of the many Colon Club threads on Xeloda and Xelox:

Re: Xelox experience...any insights?

Re: Xeloda Q and A

Here are all of the Colon Club threads that have 'XELOX' somewhere in the title:

All XELOX threads

Thanks for suggestions for hand warmers as the weather is still not warm in New England!! My concerns for want to have at home due to husbands immobility
is for bodily fluids as just in case he cant walk to bathroom. I plan on keeping gloves, adult wipes, plastic bags, etc. Has anyone had experience taking care of
someone with these issues? Can you dispose in regular garbage, or use special bags? He starts chemo within 2 weeks, and I gave oncologist a list of 5 other questions,
which I typed and left for them to answer at their convenience but that was a couple of weeks ago. I just don't want to think I am a pest!

I am really concerned about side effects of Xeloda affecting hands and feet since he is on crutches and I am afraid to mention it to my husband yet. He has info that I printed out about the medication from different sites, so I know he is aware. I guess on my day off I will have to have another heart to heart with him and make
sure he calls oncology department with concerns I feel like I have had to do all the research for him, explaining to his family, I think he would rather have me do it
that himself but I am starting to feel the burden. I explained I would do everything I can to make it easier on him as he is the one to go thru it. Just don't know if this is the right approach, but I guess there is no right way as everyone's path is different, but I would welcome ideas from either ones taking or have taken chemo or the care takers.

src1976 wrote:Thanks for suggestions for hand warmers as the weather is still not warm in New England!! My concerns for want to have at home due to husbands immobility
is for bodily fluids as just in case he cant walk to bathroom. I plan on keeping gloves, adult wipes, plastic bags, etc. Has anyone had experience taking care of
someone with these issues? Can you dispose in regular garbage, or use special bags? He starts chemo within 2 weeks, and I gave oncologist a list of 5 other questions,
which I typed and left for them to answer at their convenience but that was a couple of weeks ago. I just don't want to think I am a pest!

I am really concerned about side effects of Xeloda affecting hands and feet since he is on crutches and I am afraid to mention it to my husband yet. He has info that I printed out about the medication from different sites, so I know he is aware. I guess on my day off I will have to have another heart to heart with him and make
sure he calls oncology department with concerns I feel like I have had to do all the research for him, explaining to his family, I think he would rather have me do it
that himself but I am starting to feel the burden. I explained I would do everything I can to make it easier on him as he is the one to go thru it. Just don't know if this is the right approach, but I guess there is no right way as everyone's path is different, but I would welcome ideas from either ones taking or have taken chemo or the care takers.

If you gave the oncologist a list of questions, and you feel remorse, just wait for his bill Ask and ask away, that is his or her job, and be sure to get what you need, as far as advise, pain medication, or any other prescription you need!
Regards,
Michael

I am also new, I was just dx two months ago with cc stage 3c. I had my surgery done February 2. I will be doing my third chemo next week. Thank God I have not had any problems with my chemo so far. I just glad I found this site.

src1976 wrote:I am optimistic for recovery but as I am sure every one here can understand we are just afraid of the unknown, which are the side effects

Hi SRC1976 - Here is some information on XELOX for you. (I assume that the treatment involves Xeloda pills plus an oxaliplatin infusion, i.e., XEL-OX).

Here are some links for side effects that can be expected during XELOX treatment. (I think you said that you have already read most of this, but here it is again for reference). If they gave you copies of the Xeloda (capecitabine) patient information booklet, and the Eloxatin (oxaliplatin) patient information booklet, you should read them and try to set up a system for tracking your husband's side effects, week by week, so that you have something to show the doctor each time you meet with him/her.

• XEL-OX
  
  XEL = Xeloda (pill)
  Xeloda side effects
  https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_070#5
  http://www.drugs.com/sfx/xeloda-side-effects.html
  http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx
  
  OX = Oxaliplatin
  Oxaliplatin side effects
  https://portal.nursing.iupui.edu/index.php?seq=_002_005_001_410#5
  http://www.drugs.com/sfx/oxaliplatin-side-effects.html
  http://chemocare.com/chemotherapy/drug-info/Oxaliplatin.aspx
  .
• Side effects log -
  _MON____TUE_____WED____THU____FRI_____SAT____SUN__
  .AM PM...AM PM....AM PM...AM PM...AM PM....AM PM...AM PM.
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Diarrhea
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Vomiting
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Nausea
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Mouth Sores
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hand-and-foot syndrome (HFS)
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fever or infection
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Stomach area pain
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Pain (other)
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fatigue
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Constipation
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Loss of appetite
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dehydration
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Skin problems
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hair loss
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dizziness
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Headache
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Insomnia
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Taste problems
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| etc..
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
  .
• Medications for each side effect - For each of the major expected side effects, you should have a plan for treating the side effect at three possible levels of intensity, for example:
  
  1. Mild level - Home remedies or over-the-counter preparations
  2. Moderate level - Mild prescription medications or over-the-counter preparations
  3. Severe level - Strong prescription medications
  
  It would help to have the options identified in advance at these three levels for each major type of side effect (and approved by your doctor), although it may not be necessary to purchase everthing in advance. Some products may be hard to find, so it may be wise to do some research in advance to determine where you are going to obtain the products in case you ever need them.
  
  It is important to be pro-active and start treating the problems early, as soon as they start to appear. There is a reason for this: Under chemotherapy, the immune system becomes somewhat compromised and a bit dysfunctional. It takes a bit longer for medications and treatments to take effect, so you need to start the treatments early, at the first sign of a problem. If you decide to wait until the problem becomes almost unbearable, then this might be a bit too late for your immune system to step in, catch up, and quickly solve the problem. In a way, there is no point in taking a 'macho' approach by trying to be a hero by toughing it out. Now is the time when your body needs tender loving care by giving it some form of treatment whenever something starts going wrong.
  .
• Consent form - If you have not done so already, you will need to read and sign the hospital's "Chemotherapy Informed Consent" form. This is a form that describes the major risks and benefits of the treament procedure. I would recommend that you read your form thoroughly before you sign it, and be sure that any questions you might have are answered before you sign. Also, ask for a photocopy of the form that you have just signed. A sample template of such a form can be downloaded from the link below. Click on the link, and use the SaveAs option to save the file to the Windows Desktop. Then after the download is complete, open the file and look at its contents, in particular the section on "Risks/Side Effects of Proposed Treatment". This is where the main side effects of your treatment (XELOX) will be listed on the particular form that they give you to sign. Chemotherapy Consent Use and Discussion Guide
  .
• Book - I would recommend reading the following book, which gives a general introduction to chemotherapy without focusing on any particular drug. The emphasis is on how to deal with the main side effects that are common to most all chemotherapy regimens, i.e., nausea, diarrhea, fatigue, neuropathy, etc. It is a good guide for someone who has had no prior experience with chemotherapy
  "Chemotherapy Survival Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
  .
• Oxaliplatin -Patient's weight - Oxaliplatin dose is determined by patient body surface area (BSA) measured in meters squared, the formula for which requires your height and weight as input. Body Surface Area (BSA) Calculator. Be sure that they get your exact current weight, otherwise they may put the wrong dose of oxaliplatin in the syringe (i.e., don't get weighed with your pockets full of keys, cell-phone, wallet, etc, and be sure to take off your shoes and any heavy clothing). If you weigh in at a heavy weight, the dose they calculate for you may be too high, and it may amount to an overdose. A normal dose of Oxaliplatin (85mg/m2) is bad enough, and you certainly don't want to get an overdose. Also, make sure they re-weigh you properly for each new cycle of Oxaliplatin, since you may be losing weight from one week to the next, so your dose should be decreased each time according to amount of weight lost.
  .
• Oxaliplatin - Slower infusion rate. Normally, the Cycle 1 infusion is run at a slower rate (like 3 hours instead of the normal 2 hour infusion). This is so that they can better monitor the patient for reactions during the first infusion. From Cycle 2 onward, however, they will probably try to set up the infusion at the normal rate (like 2 hours to deliver the same amount of chemo that was delivered over a 3-hour span in the Cycle 1 infusion). This might be too fast for you. It would be less stressful on your system if they continued with the slower infusion rate from Cycle 2 onward. The down-side to this is that your infusion sessions would be an hour or more longer than standard if you choose to go with the slower setting. This is something that you could discuss with your oncologist.
  .
• Oxaliplatin -Lower overall dose of oxaliplatin - I think the standard dose for oxaliplatin is 85mg/m2, but the fall-back dose for patients who cannot tolerate this level is 75mg/m2. It might be better for you over the long haul if you were given the lower dose instead of the standard dose. With the lower dose you would have almost all of the benefits of oxaliplatin, but would have the added possible benefit that you may be able to tolerate oxaliplatin for the full 6-month treatment period as opposed to having to drop it completely after only 2 or 3 months. This is also something you could discuss with your oncologist.

Sorry you are here but keep hope. It is so scary at the beginning(wow that's an understatement) but the people in the field and the patients will make it easier. There is always someone worse off than you. The Xeloda may make him nauseated but it will fade. The radiation may cause some pain especially at the end but it will go fade. He may get some other crazy symptom but most fade over time. Live each day! Celebrate each milestone! Know that there are perfect strangers praying for both of you every day. I am Stage IIIC and NED for a little over 2 yrs. (Surgery Dec 23,2012). This site helped me the most; even more than the doctors (don't let them read this!). Gave me so much info and support when no one else seemed to understand. I am still afraid every time I have a test or scan but you know that you will be strong. You will surprise yourselves. Believe it or not, it made me a better person for understanding what really is important in life and made me think before I speak. Sorry I am preaching!

I will be one of the strangers. God bless.