The Colon Club

What I learned this time around:
Change bag day of infusion- hands don't work well to do day after.
Symptoms come on quicker and apparently stronger each round.
A fisted hand isn't this best way to do any work. Hard to type with a left hand and right index finger. I am good the with to text, teach students and patients but never expected to need myself.
Wear a scarf to cover nose and mouth, helps prevent breathing problems. Even a light pretty scarf does the trick and doesn't look bad.
Get a pot of hot water and add to cup as water cools down, room temperature just is too cold.

Okay... got to do try to drive. Thank goodness I have the Prius and not the manual transmission car today. I don't think my right hand could shift.

Susan

I really hate that the side effects are so bad for you

Keep plugging away and remember that these are only temporary. We are fighting a fucking nasty beast. Get home and cuddle up with something warm. Summer is on its way and that should help somewhat.

Caat55 wrote:What I learned this time around:
Change bag day of infusion- hands don't work well to do day after.
Symptoms come on quicker and apparently stronger each round.
A fisted hand isn't this best way to do any work. Hard to type with a left hand and right index finger. I am good the with to text, teach students and patients but never expected to need myself.
Wear a scarf to cover nose and mouth, helps prevent breathing problems. Even a light pretty scarf does the trick and doesn't look bad.
Get a pot of hot water and add to cup as water cools down, room temperature just is too cold.

Okay... got to do try to drive. Thank goodness I have the Prius and not the manual transmission car today. I don't think my right hand could shift.

Susan

Talk with your oncologist. The second cycle was the toughest for me and we either skipped a week or dropped the dosage. I'm having a tough time today as well but I know what to expect which helps a tiny bit. Keep soldiering on and feel free to ask questions.

I always changed my bag the morning of because I knew my hands couldn’t do it afterward. And the side effects did come on quicker and stronger each round. I’m so sorry you’re having a hard time. Keep a pair of gloves around and stay warm. Also it helped me to drink a lot of electrolytes the day before infusion, it helped with cramping. I know it’s cold comfort to say it’s only temporary. When I was in the middle of it I thought it would never end. But it did.

heiders33 wrote:I always changed my bag the morning of because I knew my hands couldn’t do it afterward. And the side effects did come on quicker and stronger each round. I’m so sorry you’re having a hard time. Keep a pair of gloves around and stay warm. Also it helped me to drink a lot of electrolytes the day before infusion, it helped with cramping. I know it’s cold comfort to say it’s only temporary. When I was in the middle of it I thought it would never end. But it did.

I just finished 6 so it feels like the end is near but it's still 9 weeks and it still is awful, at least for this week. And I'm at 55%. I assumed that 55% wouldn't be tough. But it is! I agree on the elctrolytes and I have an order online - just haven't pushed the button yet because I don't have enough for free shipping (yes, I'm cheap).

Thanks all for the support and wisdom. I will work on the electrolytes. I forgot to eat today, so busy and a little overwhelmed by a community board I am on that has a bike ride tomorrow and things just didn't get handled. I had been putting out fires all day, not of my making or I would be warming my hands over it.
Thank goodness for my dog and my husband, they warmed the bed for me and keep me moving.

Susan

Caat55 wrote:... I forgot to eat today, so busy and a little overwhelmed...

Remember ... the instructions for taking Xeloda are to take the pills 30 minutes after the morning meal and 30 minutes after the evening meal. Did you also forget to take the pills?

I think Xeloda needs food in the stomach in order to metabolize properly and to convert itself to 5FU-equivalent.

O Stoma Mia wrote:

Caat55 wrote:... I forgot to eat today, so busy and a little overwhelmed...

Remember ... the instructions for taking Xeloda are to take the pills 30 minutes after the morning meal and 30 minutes after the evening meal. Did you also forget to take the pills?

I think Xeloda needs food in the stomach in order to metabolize properly and to convert itself to 5FU-equivalent.

I have to record when I take the Xeloda or I would forget it sometimes. So I remember the recording so that it triggers remembering the pills and the food I need to take before it. The chemo messes with you so much that it helps to have some mechanism to remind you to take it and eat beforehand and have plenty of water to take it with.

Caat55 wrote:...The nurse who did my chemo teaching gave me a pamphlet and Folic acid was contraindicated. I will check to see what else is mentioned. 1cup water, salt and baking soda gargle for mouth sores twice a day.

You mentioned earlier that you had a pamphlet from the chemo nurse that gave some tips to consider.

I was wondering how extensive the information was, and whether it covered any hints on how to prevent or delay the onset of various common side effects.

For example, did the pamphlet say anything about hand and foot hygiene (importance of manicure, pedicure)? Did it say anything about oral hygiene measures to prevent mouth sores? Did it give any instruction on handling hair and nail problems? Any lotions or creams to recommend; any to avoid? Any specific eyedrops or nose drops to recommend? Any hints on bathing or showering (e.g., sitz baths; hot vs cold showers, etc.), or on how often to shampoo hair? Any hints on best kinds of clothes to wear to avoid problems? Any hints on how to minimize risk of infection? Any instructions on when or if to have vaccinations (flu, etc.). Any instructions on how to handle peripheral neuropathy? Any instructions on ways to achieve good electrolyte balance? Any instructions on household cleanliness (e.g., changing sheets and pillowcases often; changing towels and washcloths often)?

When I went through treatment, there were no written instructions of any kind from the hospital, but I notice that some members here have been given pamphlets or information sheets by their doctors. I was wondering how common it is for patients to be given written instructions or fact sheets, because this could turn out to be quite useful.

NOTE: Since I didn't get any fact sheets or leaflets from the hospital, I bought a 2009 book on chemotherapy survival, which I found useful at the time. But it was very general, and did not address all of my concerns related to the type of treatment that I had been given:

"Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)

I had a 30 minute Chemoteach section before chemo with pamphlets.

I haven't forgotten the Xeloda yet. Quite a problem though, they only gave my husband the extra pills on Thursday. I didn't check, felt two containers and assumed it was both prescriptions but it was to different 150 prescriptions(different manufacturers). Now I am trying to get a refill as I won't have enough for tomorrow's morning dose.

I was part of a bike ride and had to be at the start at 6:15, even with two pairs of gloves fingers were unusable. Went home took a warm shower, dressed in leggings, a skirt, a heavy shirt and a second shirt under a coat and scarf and had pins and needles. Fortunately the Hamm Radio operator at the rest stop was great and helped me set up. My spot was in the sunshine, usually a problem but not this time. A layered up with sunscreen, wore a hat and felt good.
I made it all day, needed a nap when home.

The hardest thing continues to be the pebbles in my throat from the cool air.

S

O Stoma Mia wrote:

Caat55 wrote:...The nurse who did my chemo teaching gave me a pamphlet and Folic acid was contraindicated. I will check to see what else is mentioned. 1cup water, salt and baking soda gargle for mouth sores twice a day.

You mentioned earlier that you had a pamphlet from the chemo nurse that gave some tips to consider.

I was wondering how extensive the information was, and whether it covered any hints on how to prevent or delay the onset of various common side effects.

I will upload the information from the chemo teaching.

S

Caat55 wrote:I haven't forgotten the Xeloda yet. Quite a problem though, they only gave my husband the extra pills on Thursday. I didn't check, felt two containers and assumed it was both prescriptions but it was to different 150 prescriptions(different manufacturers). Now I am trying to get a refill as I won't have enough for tomorrow's morning dose.

I was part of a bike ride and had to be at the start at 6:15, even with two pairs of gloves fingers were unusable. Went home took a warm shower, dressed in leggings, a skirt, a heavy shirt and a second shirt under a coat and scarf and had pins and needles. Fortunately the Hamm Radio operator at the rest stop was great and helped me set up. My spot was in the sunshine, usually a problem but not this time. A layered up with sunscreen, wore a hat and felt good.
I made it all day, needed a nap when home.

The hardest thing continues to be the pebbles in my throat from the cool air.

S

I mentioned that my prescription with the mail-order pharmacy was 4,000 mg and I was taking 3,500 mg and his comment was that he'd rather see me with too many than see me run out. I have talked to my pharmacy in the past when they looked like they would miss the date and we made arrangements to use a local WalGreens that they could work with to get me my pills but it was a generic (which would have been fine with me). It's rather amazing that these folks are so difficult to work with compared to the corner drug store. I am going to indicate this on our annual healthcare benefits survey. I don't know whether or not it will help as I think that there are only two of these mail-order pharmacy companies left and I've heard that they're both awful.

I'm impressed by you going out and working out. I'm working out but I keep it pretty light the first 7-10 days after the Oxaliplatin.

I mentioned that my prescription with the mail-order pharmacy was 4,000 mg and I was taking 3,500 mg and his comment was that he'd rather see me with too many than see me run out. I have talked to my pharmacy in the past when they looked like they would miss the date and we made arrangements to use a local WalGreens that they could work with to get me my pills but it was a generic (which would have been fine with me). It's rather amazing that these folks are so difficult to work with compared to the corner drug store. I am going to indicate this on our annual healthcare benefits survey. I don't know whether or not it will help as I think that there are only two of these mail-order pharmacy companies left and I've heard that they're both awful.

I'm impressed by you going out and working out. I'm working out but I keep it pretty light the first 7-10 days after the Oxaliplatin.[/quote]

I called the hospital"s inpatient pharmacy. She looked upthe prescriptions and although she didn't have them in stock, felt confident the regular pharmacy and my doctor could make it right tomorrow. so for the mean time, I am taking 10 150s twice a day.

Cancer has taken enough of my life, energy. I won"t allow much more. Drinking chicken broth today to rebuild electrolytes, had a lovely homemade rhubarb pie my husband made for breakfast and making bread for dinner tonight with friends, Paella. Just keeping move, psyching myself up for the long haul.

I think your work out routine is impressive!. Truthfully, I don't know how you cold weather folks cope with the chemo side effects, I am in awe.
I just try to live my life. I know a few crunches and weights would be good but a shovel and the bread dough feel more calming.
S

Caat55 wrote: ... I see the oncologist on either Monday or Tuesday after infusion...

When you see the oncologist this week, maybe you could ask for a detailed review of your Round Two bloodwork to see if there are any tests that are borderline or trending out-of-range. This is because a common cause of cancelling or deferring a round is "low blood counts," and in some situations there might be something that could be done in advance to keep the count within normal range, thereby avoiding delays or cancellations of future rounds.