New here: Husband starts Xelox tomorrow.

[SwissMrs]

I'm new here but have been reading posts daily for the past 4 weeks. The members of the group seem so knowledgable and compassionate to each other and I think I'm finally comfortable enough to share our story.

My husband, 41 years old, was recently diagnosed with stage 3 colon cancer. He had a section of his colon removed as well as 26 lymph nodes, 4 of which were positive. His doctors feel he has an aggressive form since his tumor was very small but cancer has still spread to the lymph nodes. Lab report indicates: T1N2aM0.

I have been struggling with accepting my husband's diagnosis and can't stop thinking about how our lives have so suddenly changed. I cried quite a lot for the first 2-3 weeks, but I have been feeling steadily stronger this past week or so. Since he has recovered from the surgery, things "almost" seemed normal. Now that Urs will begin chemo tomorrow, my temporary, but rather blissful state of denial will have to end.

I have read about the expected side effects and I will support him in any and every way I can. Are there any suggestions as to how I can best help him through the chemo?

[weisssoccermom]

First of all, welcome to the site. Secondly, let me tell you that I'm sorry you had to join our group but hope that you'll continue to come and post....let us get to know you, help you and support you during the upcoming months.

My one piece of advice to you is to try and let your husband live as normal a life as possible. Yes, he's going to get tired, yes, he's going to have his 'ups and downs' but most of us just want to be normal. For me, that meant still doing the washing, cooking, shopping and most importantly, teaching my youngest how to drive the car. I did NOT want to be treated like an invalid...most of all, I didn't want people 'babying' me or coddling me as though I was some sort of pathetic person. Initially when I started chemoradiation and tried the 24/7 pump, I had people stare at me in the grocery store or give me the 'I'm so sorry look' when they saw the tubing, etc. I HATED that. My son didn't want people at his high school to know that I was sick....he was afraid that they would treat him differently.
You'll find that the cancer journey isn't a 'one size fits all' so you're going to have to decide how your husband wants to be treated. Don't be surprised, however, if you fuss too much over him and he gets really irritated! There is a fine line between what a cancer patient CAN do and what they WANT to do, but, IMO, trying to let them lead as normal a life as possible is probably the best medicine. So much control is taken out of our lives that we need to have SOME control over at least something.

Not having any idea how the medical system works in Switzerland, I can only offer you this other piece of advice. If possible, have both your husband and you (if he is ok with that) be as proactive in his medical care as possible. For me, just having some say and input into my treatment plan was an enormous help....it made it feel like the control wasn't totally being taken away from me. That's how I felt...not saying that it's the same way for everyone.

Just being there for your husband is the best medicine. Let HIM take the lead...let hubby tell you what he needs/wants and go from there. You might be completely surprised that it isn't as bad as you think. I think we oftentimes have this perception that chemo is going to make us bone thin, sleeping all the time and/or being in the bathroom either vomiting or sitting on the toilet. No one is saying that this will be easy but it's probably not going to be as bad as you've imagined. You're going to find that you have an inner strength that you didn't realize you possessed.. you'll be surprised at how tough you can be. With the upcoming nice weather, be careful about too much sun exposure while being on Xeloda (wear hats, etc) but do enjoy the outdoors, the flowers, the birds, etc. Life life....don't let this cancer diagnosis stop you and/or your husband from living and enjoying the things in life that you like to do.

Jaynee

[lydia123]

Hi.

My husband was diagnosed nearly two years ago with Stage III colon cancer and had FOLFOX. I'm posting because I know how much it meant to me to hear from caregivers similarly situated at that time. Patients with earlier stages, (and particularly caregivers) tend to drift away from this site as our lives become less cancer-consumed -- this is a good thing. I am drifting away these days, myself, because at 2 years out, it seems the right time.

My drifting aside, please PM me if you ever want or need a friendly voice. I know a lot about nausea management, and we went through this with a ten year old.

Yours,

Lydia

PS: We spent a lovely 36 hours in Zurich last summer.

[Jimswife]

My husband was diagnosed stage 3 in October 11 , his was t2/t3 with 2 lymphs positive from 21 , I was / still am very very frightened , I scoured this board and others for months looking for sucsess stories , I emailed people / reached out to them to look for stories of hope , stage 3 is beatable , like Lydia says people tend not to post after a couple of years , I know this as like I say I emailed people / pmd them to ask if they were still in remission etc and they all replied saying that indeed yes they were still in remission ( some way over the 5 yr mark ) but didn't stop by the board much these days as cancer was something that was in the past / not on their minds 24/7 so they didn't feel the need to post / visit the site often , you will get the odd few here and there who were original stage 3rs that have had recurrences but they are in the minority rather than the majority . T1 is very small Tumor and even 4 lymphs positive isn't the end of the world , I know people with 10 plus positive nodes that have beaten it , but the less the better as it usually indicates lesser spread than if more were positive . There's a thread on here called stage 3s ned for how long which has lots and lots of positive stories from stage 3rs , most of it are quite a few years out now and are still no evidence of disease , I'll try and find it and bump it up to the top for you , have a read through, it will give you hope .

[Toby57]

Sorry you had to join, but glad you found this site for support and learning from others who are going through similar situation to your husband. I myself have a similar diagnosis to your husband as you my signature below shows. Just like you, it was a shock to me, my wife and family, one day your are fit and healthy and suddenly you are told you have this horrible disease.
Just being there at his chemo and through out his battle is very important. He will have good and bad days physically and mentally. The physical side is fatigue, loss of appetite, and the side effects of the Folfox regiment, and I am assuming he will be given Oxaliplatin , leukevorian and the 5 fu infusion pump . It is different for each person, I was working out between chemos to the surprise of my oncologist because most people are too tired to workout. Make sure he stays very well hydrated, much more than before, his oncologist should mention the amount of fluids he needs to take daily to flush the chemo out. Mentally, he will have days his mood swings are noticeable . I felt depressed few times where I just wanted to be alone, so give him space when he shows signs he want to be left alone. The disease is beatable , studies showed medeteranian diet and exercise play a factor of preventing reoccurrence when he is done with chemo. You live in a beautiful part of the world, go out and enjoy the Swiss Alps. Good luck.

[RixInPhx]

...of the Folfox regiment, and I am assuming he will be given Oxaliplatin, leukevorian and the 5 fu infusion pump.

She said he will be getting the Xelox regimen, which is Oxaliplatin IV + Xeloda (pill form of 5-FU + Luecovorin), usually IV and 14-days of pills/7 days of rest/repeat.

Good luck, swiss,
-Rick

[SwissMrs]

Thank you all so much for your replies!

We are at the hospital now for the first infusion. What surprised me was that he had several drugs in addition to the Oxiplatin administered. First there was a cortisone injection, which they said was so he didn't retain too much water. This made him feel quite sick for a short time, so they will dilute it and slowly administer it via an infusion next time. Next came something for nausea via IV, then a Calcium/Magnesium infusion to reduce the effects on the nerves. Then the Oxiplatin and finally another infusion of Calcium/Magnesium. Is this standard procedure everywhere, or just in Switzerland?

The Calcium/Magnesium made him feel really warm, but the nurse told us to expect that. He's almost finished now and it was quite uneventful. We'll have to see how things go over the next few days.

The weather here is beautiful today and I think we'll take the rest of the afternoon to sit in the garden and simply enjoy the singing birds and newly blossoming flowers.

Once again, thank you for taking the time to read and reply to my posting.

[weisssoccermom]

Yes, it's perfectly normal to have those premeds. The calcium/magnesium is supposed to attempt to help with the oxi induced neuropathy. Studies are so so on that combination. There have been some patients who have had heart issues with that one as well....just have hubby watch this....things like a racing heart. The nurses probably won't take his pulse, so he'll have to be diligent and tell them should something arise. I'm a little surprised that cortisone so you won't retain too much water....cortisone makes you retain water. I only had the one oxi (due to an extreme allergic reaction) but said no to most of the premeds -particularly the steroids. They may also have given your husband some other drugs such as Benadryl or Ativan as well. Whatever, it's perfectly normal.

Good luck. Remember to have him only drink room temp liquids for a few days. Even those for me caused a problem. I had to swish the water in my mouth for a few seconds before I could swallow it or it was awful. Write down how long the neuropathy lasts and make sure to take that with you to the next appt. The onc will want to know that information.

Keep in touch. Take care.
Jaynee

[horizon]

Since he has recovered from the surgery, things "almost" seemed normal. Now that Urs will begin chemo tomorrow, my temporary, but rather blissful state of denial will have to end.

Not necessarily. I'm similar in age and treatment to your husband and I just finished Xelox a few months ago. Some of the best advice I got on here was to not get overwhelmed by thinking of how much is ahead of you and just to take things a few days at a time. The Oxi infusions really suck, but for the most part I just continued to live my life around them. During the "off" week I went into full on denial mode and pretended that there wasn't anything wrong with me. I think doing that really helped me slog through the months of chemo.

[SwissMrs]

Sounds like great advice. We will just have to concentrate on getting through the next several days for now.

The infusion took place yesterday and Urs is feeling quite unwell today. His arm is very painful, all the way up to the shoulder and he hopes this goes away quickly. He has tingling in his fingertips and is sensitive to cold as expected. Is the severe arm pain to be expected? How long will it last and is there anything we can do to lessen the pain besides applying heat? This seems to be his major complaint at the moment.