Here I go again. Xelox this time

littlejulie

Hi Tara,
I can't believe
Hi Tara,

I can't believe what you have been through - you are a TRUE survivor in every sense of the word!!! Good luck with the next round of chemo - I'm sure you know exactly what to expect. I haven't posted in awhile but I do tend to lurk. Good Luck!

taraHK

bonzonie said:

Hair here but not there.
Hi Jamie,

You mentioned losing hair. I'm not sure whether it is the oxaliplaitn or the Xeloda that is doing it but hubby's hair is definitely thinning. He got a very short haircut just before surgery so he could just use a wash cloth to freshen it up while in the hospital, which by the way worked well, but since he started chemo it is thinning. He said he is just going to get a buzz cut this week before his next cycle. What is interesting is that his stomach hair has come back so thick after being shaved for surgery that his scar is barely noticble. Good thing too because he loves to swim and obviously feels more comfortable about how he looks with his shirt off now. Unfortunately pool season is coming to a close and he will miss his almost daily swims when we close the pool next week.

One thing I am wondering is did anyone here have to stop or hold off on chemo due to low white counts. His appear to be decreasing about the same rate/amount with each successive treatment. I hope it levels off and doesn't fall so far as to hold back treatment or put him at too much risk of infection. Especially with cold and flu season just around the corner.

Good luck with your treatment!

Bonnie

low white blood counts
Hi Bonnie,

I did have low white blood counts while on FOLFOX. Do you know what your doctor's cut-off is for being allowed to proceed? Mine looked at neutrophyl (sp?) as well as overall white blood count (WBC). A couple of times I had to delay by one week -- which is fine (a little hard, because I'd get psychologically all prepared for the chemo and then have quite mixed feelings when it was delayed). There are some shots you can get to boost your white blood count. I'm blanking out on the name but others will be able to pitch in. One is a single shot which lasts about 2 weeks. The other is daily for x days. I injected myself at home (things you never thought you'd be able to do!!) for 3-4 days each cycle and that took care of it. Yes, there can be an increased risk of infection esp when you get below a certain level. I'm sure you are already doing all the super-hygiene stuff (my hands got chapped I washed them so much). I hope his counts level off -- good luck to you both.

Tara

msccolon

taraHK said:

low white blood counts
Hi Bonnie,

I did have low white blood counts while on FOLFOX. Do you know what your doctor's cut-off is for being allowed to proceed? Mine looked at neutrophyl (sp?) as well as overall white blood count (WBC). A couple of times I had to delay by one week -- which is fine (a little hard, because I'd get psychologically all prepared for the chemo and then have quite mixed feelings when it was delayed). There are some shots you can get to boost your white blood count. I'm blanking out on the name but others will be able to pitch in. One is a single shot which lasts about 2 weeks. The other is daily for x days. I injected myself at home (things you never thought you'd be able to do!!) for 3-4 days each cycle and that took care of it. Yes, there can be an increased risk of infection esp when you get below a certain level. I'm sure you are already doing all the super-hygiene stuff (my hands got chapped I washed them so much). I hope his counts level off -- good luck to you both.

Tara

WBC shots
Neupogen and Nuelasta! I'm far enough out of chemo to have my memory back, which is AWESOME! I remember the first time i had to give myself the shots! I was all worked up, but i was determined... certainly something as simple as what my nurse showed me would be fine. Then I injected it and it WAS as easy as it looked! I was in tears from the relief and feeling like such an idiot for getting so worked up! And it is a bummer when you get yourself psyched for the treatments and have to head home without it... even though it's GREAT to get another week of recovery! I felt bad for the woman who had scheduled her day around taking me to and from, and would have to reschedule for the following week! But then the treatments are done and all of that just fades into the background!

bonzonie

Melanie781 said:

Xelox treatment
Hi Bonnie,
Thanks for sharing your experiences. My guy has only complained of aches in his hands, but says his feet are fine. The nausea was pretty bad for each round, but is more controlled this time. He was given 2 types of medication to take and once I reminded him to take it, he felt better. (He was hesitant to take medicine to alleviate his symptoms until the last minute and I usually had to remind (nag) him.)

My husband is familiar with taking Xeloda. It is what he took prior to the surgery, along with radiation doses, for 25 treatments (only on weekdays.) He tolerated it very well and really didn't have any side effects that we can definitely attribute to the Xeloda. The radiation is what caused a lot of pain for him (for obvious reasons.) He also had a lot of diahrrea, which can also be attributed to the radiation and the Xeloda. Additionally, the amount of medication was the same and the amount he is taking each day for the adjuvant chemo.

At the beginning of round 2, he had a severe headache later that night and had severe diahrrea, so the onc prescribed 6 hours of IV fluids, which prevented him from becoming dehydrated. Round #3 was particularly bad because he felt very sick and didn't get up very much for a week and a half. He thought he had an intestinal blockage, but the onc saw him and determined that wasn't so. The onc did change his pattern of receiving the 3 week regime. He now has the infusion on day 1 and then starts the 14 days of Xeloda the day after. He mainly complains about his eyes feeling very dry and occasional double vision and, of course, nausea, but takes the proscribed meds without my nagging. Today, so that we are better prepared at our next onc appt (which we have the day before each round,) I finally sat down with him and started a journal for him regarding his symptoms. I want to be able to report details at our next onc appt. I read in several places that is was a good idea to have one. He won't do it himself, so I finally am doing it for him.

Well, I almost forgot to address the cold-tolerance; he has the sensitivity we were warned about, but is doing well at avoiding cold things. We even bundled him up and covered his face for going outside and enjoying a 4th of July celebration, eventhough it wasn't very cold. Mostly, the tingling recedes after about 3-4 days and he doesn't have to beware so much of the cold. Also, he uses an oven mitt to take things out of the fridge and then lets it sit until its not as cold (he can't stand warm water, etc., which makes drinking enough liquids pretty tricky.) He does try to drink a lot of warm tea, though.

Here's to tolerating the complete recommended rounds! I wish you guys the best and hope we all of terrific results. :0)

~Melanie

Round 4 -- Oxaliplatin Infusion
Hi Melanie -- I told my husband that your husband had the same conerns about round 4 after a rough round 3 but that round 4 actually had not been as bad as round 3 for him. It certainly made him less anxious to hear that. Not sure if it was psychological or not but he had 4th infusion yesterday and this is the best day 2 he has had so far. We did get him something called "Queasy Pops", lollipops with ginger, and his nausea has been much less than in the past at this point as well.

Many, many thanks,

Bonnie

bonzonie

taraHK said:

low white blood counts
Hi Bonnie,

I did have low white blood counts while on FOLFOX. Do you know what your doctor's cut-off is for being allowed to proceed? Mine looked at neutrophyl (sp?) as well as overall white blood count (WBC). A couple of times I had to delay by one week -- which is fine (a little hard, because I'd get psychologically all prepared for the chemo and then have quite mixed feelings when it was delayed). There are some shots you can get to boost your white blood count. I'm blanking out on the name but others will be able to pitch in. One is a single shot which lasts about 2 weeks. The other is daily for x days. I injected myself at home (things you never thought you'd be able to do!!) for 3-4 days each cycle and that took care of it. Yes, there can be an increased risk of infection esp when you get below a certain level. I'm sure you are already doing all the super-hygiene stuff (my hands got chapped I washed them so much). I hope his counts level off -- good luck to you both.

Tara

Hold on Chemo
Tara -- Thanks for the info. I asked the nurse coordinator yesterday and she said they would do exactly the same thing and then resume chemo. Whew! But right now they say his white count is OK from their perspective so he had chemo yesterday. I really want him to get through all 12 treatments and was worried.

Thanks a million,

Bonnie

msccolon

bonzonie said:

Round 4 -- Oxaliplatin Infusion
Hi Melanie -- I told my husband that your husband had the same conerns about round 4 after a rough round 3 but that round 4 actually had not been as bad as round 3 for him. It certainly made him less anxious to hear that. Not sure if it was psychological or not but he had 4th infusion yesterday and this is the best day 2 he has had so far. We did get him something called "Queasy Pops", lollipops with ginger, and his nausea has been much less than in the past at this point as well.

Many, many thanks,

Bonnie

Queasy Pops
Outstanding to hear they help with chemo induced nausea as well! My daughter has had a rough time with her first preganancy (my first granchild yippeeee!!!) and she loved those things! I will be sure to try them in the future! I can't drink ginger ale because of a mistake in using it for prep one time... the thought of it makes me want to ralph! (am I showing my age by using that term? ) Take care. Mary