The Colon Club

I called McKesson last night asking where my ostomy supplies were. I had started the ordering process mid-December. They dropped the ball multiple times (I was calling weekly). The guy went through the notes on my account, said that nothing had been done, apologized and said that they'd send them out immediately. And they did. I have them with me now. So I'm safe for two months.

I also bought Burt's Bees Hand Salve for my dry hands, vanishing fingerprints and cracks at the tips. I tried it out and it's slippery though it's not petroleum-based. What was nice, though, is that there's something in there that makes my hands feel warm. And that takes away the cold sensitivity/neuropathy. At least for now. If this works, then I'm going to be a good customer of this stuff.

The week after the second infusion was brutal and I was weak, tired and frustrated. I'm better today and will get better in the next few days. This stuff is rough!

The stuff that makes your hands feel warm is Eucalyptus Oil.

I did love my week off. Chemo is tough. It's amazing how crappy it can make you feel. You're getting closer to the end.

I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.

heiders33 wrote:I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.

You're almost there. I had six rounds of Xelox also. I remember how excited I was for my last round. Hope your next 3 weeks aren't too bad.

Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
S

Caat55 wrote:Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
S

A person on another board thought that we were all doing pretty well because we didn't often express our problems.

I do like to tell it like it is and prefer that others do the same. The first two stages weren't that bad for me but the third phase has been tough. And I know that it's tough for a lot of other people. There are a few people that don't have problems with Oxaliplatin but I think that the percentage is small.

susie0915 wrote:

heiders33 wrote:I just had my fifth round today and boy do I feel terrible. But it helps knowing that I’m near the end, and that I can recover.

You're almost there. I had six rounds of Xelox also. I remember how excited I was for my last round. Hope your next 3 weeks aren't too bad.

Did not do the Xelox, but six rounds of Folfox on that two week cycle. It was a nice feeling when finished.. round 5 seemed rougher than the last (but maybe I was just glad to be done?!)... almost there!

NHMike wrote:

Caat55 wrote:Mike
I am sorry things are so rough for you. I appreciate your honesty as it give those of us behind in treatment you a realistic picture of what's ahead. I don't like euphemisms, but facts. Honestly everyone's comments and suggestions are great. I found No Crack Super Hand Cream works great, doesn't make my hands feel oily, slippery.
S

A person on another board thought that we were all doing pretty well because we didn't often express our problems.

I do like to tell it like it is and prefer that others do the same. The first two stages weren't that bad for me but the third phase has been tough. And I know that it's tough for a lot of other people. There are a few people that don't have problems with Oxaliplatin but I think that the percentage is small.

It is tough but you are doing a nice job powering through it; it is important for people to know that you can get through it also! I was on a wed to Friday infusion cycle; Sat was bad, Sun just as bad, but felt more or less OK by the following Friday (cycles 3, 4, 5 were worst for me). My hat is off to everyone doing this now when the weather is cold here in North America (or have in past winters) also!

Hi Mike,
Things are quiet from you. Hope you are doing okay!
S

Caat55 wrote:Hi Mike,
Things are quiet from you. Hope you are doing okay!
S

Thanks for asking.

Today's my first decent day, 18 days after the infusion. I contacted the doctor Thursday indicating my problems and asking for a dosage reduction and/or a week break. He thought that a break might be a good approach with tests to see how I am doing. I will see if I can get the tests on Tuesday - he was worried about one of the test results before the 2nd infusion. So we might delay infusion by a day or two or up to a week. My wife is heading out of the country for a month so things will be more challenging for a while.

Feeling better really changes your outlook. A few days ago I was fairly miserable.

Temps hit the 50s today which probably helped. We have been below freezing all day that being in the 40s and 50s feels incredibly refreshing. I drank a few cool drinks today as well and was okay.

Hi Mike,
James here. We spoke when you first started on this journey. I live in Exeter and not sure how far that is from you, but if you need anything feel free to ask. I had a very difficult time with chemo too, especially oxalyplatin. I went through this treatment in 2006 so I imagine some things have changed, but I found that the meds they gave me to manage side effects caused their own side effects. The more I could simplify meds and food, the better off I was.

To manage side effects I only took lorazapam and smoked tiny (really tiny) amounts of pot and that got me through my infusion weeks well. The other thing that helped was I noticed that I felt way worse is I didn't eat than if I did. So, even though I had no appetite I experimented with different favor profiles (salty, sweet, spicy, etc.) to find things that broke through that metallic taste in my mouth and forced myself to eat. Increasing food intake helped and I found flavors or tastes that worked. For example, pepperoni pizza (frozen, not from a pizza place) was tolerable and that bland flavors--chicken without spice, plain rice or potato, etc.--were worse than things with a little heat or spice. I also found that tonic water mixed with lemon was good too. I think the bitterness of it was helped. The tonic water also helped ease my symptoms. I wouldn't mix grapefruit juice, though.

I hope this helps. As I said, feel free to reach out. If you don't still have my contact info let me know.

Best,
James

It does help when the weather isn't so cold. Hopefully postponing treatment will be helpful

Sorry to hear that the side effects are hitting you this hard, Mike. It is so strange how people react so differently. Hope you feel better soon!

I've always thought that if there was one thing I would want people to know it's that cancer and the treatments affect everyone uniquely. There isn't a single cancer experience, though many shared experiences.

James65 wrote:I've always thought that if there was one thing I would want people to know it's that cancer and the treatments affect everyone uniquely. There isn't a single cancer experience, though many shared experiences.

James, you nailed it above. We are all unique and so is our cancer. Chemo experiences can vary greatly.

Mike, I hope this week is gentler for you. The honest sharing of your journey is inspiring and thoughtful to so many of us!