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CPT 11

bdee
Posts: 305
Joined: Feb 2009

After my second treatment of CPT11, my hair has started falling out, I'm losing my taste buds, I am dead tired all the time, sick for three days after, my fingernails are really weak and brittle and my finger tips are peeling.
Any one else taking a low dose of CPT 11 and having any of these problems?

Thanks,
Debbie in Arkansas

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Debbie,

Sorry you're having a hard time. What are you taking the CPT-11 with? (CPT-11 is also known as Camptosar and irinotecan). The peeling fingertips sounds like the hand-foot syndrome that goes along with taking either 5FU or Xeloda. Are you also taking either of those? Yes, the hair falling out can be from the CPT-11. You likely will not lose it all- it will probably just thin. When I first started taking it, my hair started thinning right away, then it got to a point where it just stopped, even though I was continuing to take it. 5FU/Xeloda can also contribute to hair loss. I'm currently taking Gemzar, Avastin, and Xeloda. The gemzar is not supposed to make my hair fall out or thin, but it is thinning- I think it's from the Xeloda, but am not sure.
For the brittle fingernails, try taking Biotin and Collagen. Again, that sounds like it's from the 5FU or Xeloda, as they do cause brittle nails. I definitely have that going on too. I'd be surprised if you're just taking CPT-11 by itself and getting all these symptoms. I don't know about losing the sense of taste- the only time I experienced that was back when I was on Folfox (I think it was the oxaliplatin that did that to me). I never experienced that while on Folfiri or CPT-11 with Xeloda.
Being tired all the time- oh yeah- it does that to you. Hopefully, you'll get a bit of a reprieve and will have some more energy for at least the few days prior to getting the next treatment. Taking B vitamins (I take a liquid form of B complex) may help give you some more energy.
Have you had problems w/ diarhea? That was my biggest complaint while on CPT-11. That and nausea the first couple of days. I found the prescription lomotil helped control the diahrrea.

Take care and hang in there!
Lisa

bdee
Posts: 305
Joined: Feb 2009

I guess I should have said I'm also taking 5FU, Avastin and Louvecorin (don't really know the spelling). I'm taking a real low dose of all of them because when I started out on chemo (Feb. 09) I had the highest dose of 5FU, Avastin and Oxy. I almost died from taking the chemo. I didn't eat solid food for three months and lost 65 pounds in four months. I am taking 140 units of CPT11 only every other week. My onc told me this is the lowest CPT11 he can give me. He thought I might have some of the same symptoms as with the Oxy.
I already had a problem with diarrhea, so was already on a regime of taking Lomotil every six hours, so diarrhea hasn't been a problem yet.
My onc does not let me take extra vitamins like a B complex, C's, E's, etc.

Thanks for your input,
Debbie in Arkansas

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

has made my fingertips quite sore and also the blank food tastes. I wish it weren't that way, but it only lasts for a few days.

I know nothing about the CPT-11. I wish it was easier for you. Right now, the only chemo meds I'm on is 5-FU and Leucovorin. This is how I narrowed it down. The 5-FU I wear for three days and it's really only after I'm disconnected that it starts.

bdee
Posts: 305
Joined: Feb 2009

Wasn't making my fingertips peel or my hair fall out or my taste leave. Only since I've started the CPT11 have all these things started happening. When I was on just 5FU, Leucovorin and Avastin I had my chemo on Monday and I was tired, but not sick, on Tuesday, then on Wednesday I was up and going like usual. Maybe the CPT11 is making the 5FU stronger?

Thanks,
Debbie

AnneCan
Posts: 3693
Joined: Oct 2009

Hi Debbie,

CPT11 is known for hair loss; not everyone experiences it but it does happen. I lost most of my hair, but then it started growing back ~ treatment 9 or 10. I now have a pretty full head of hair, albeit short. I do find fatigue an issue (I am on folfiri - CPT11, 5FU + leucovorin (sp) + avastin). My appetite has generally been pretty good. Take good care.

bdee
Posts: 305
Joined: Feb 2009

I'm on the very same regime as you. How often do you take your treatment. I take mine every other Monday. I do not go home with a pump.

Debbie in Arkansas

AnneCan
Posts: 3693
Joined: Oct 2009

Hi Debbie,

I take my treatment every other week (Tuesdays). I do go home with the pump + it is disconnected by a home care nurse on Thursdays. I go in on Tuesday for my next treatment; it will have been three weeks because last week my daughter graduated from university + I couldn't do both. I have been on this cocktail of drugs since September 2009 + so far have had very good success - I wish you the same.

bdee
Posts: 305
Joined: Feb 2009

I'm taking the absolute lowest dosage of CPT 11 I can take and still say I'm taking it. I don't "do good" on chemo (like oxy almost killed me) so I can't go down any further.
If a chemo drug does something, like hair loss, it will do it to me before it does it to any other. My onc is pulling out HIS hair because of all the side affects from the different drugs I shouldn't have because of how low of a dose I'm taking. I'm starting to feel sorry for him instead of me. He's trying so hard to keep me alive a little longer.

Debbie in Arkansas

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

upon starting this regemin this is what i've experienced.

the very first night after the treatment i was feeling great. then about 10pm i started feeling very very cold. i was at someone's home that evening and didn't ask to turn up the heater but i sure wish i had. i felt so cold that my head started hurting. i never get headaches and out of nowhere this headache began. i also started getting nauseous then in the morning diarrhea started. the next evening this cold feeling began again and i quickly turned the heater on ( 90 deg ) and felt relief. a few days later i started breaking out. first on my shoulder blades then chest then my neck and face slightly. i'm exhausted most the time now and have a hard time keeping my RBC family of blood results to stay high. i take epogen for this. my platelets are the only blood result that has caused delays in treatment (only one week) and then we resume. i too am on this treatment once every two weeks. i was thinking, maybe they can't lower the dosage any further but have you thought of asking maybe once every three weeks?? might want to look into that? well back to side effects. after about 3 treatments my finger tips and areas of my feet began to crack. i really didn't understand what was going on then and before you know it i had to start band aiding these areas with Neosporan and that helped tremendously because it also began to become very painful. also all of a sudden my hair started falling out. it does seem in time these effects do subside. my hair has grown back, my skin on my finger tips and feet are much better. i make sure i eat very high protein meals *this helps the body repair itself* and i keep moisturizing my skin. i use a ""NON ALCHOHALIC base** lotion. there was one doctor who suggested something like 'moist band aids?' i seem to have under control so i've never acquired those and not even sure what that is?
i had my last treatment about 11 days ago and what seems to be side effects now is diarrhea, nauseous, vomiting, exhaustion, skin breaking out but not cracking, still sensitive to temperature but no headaches, my hair like i mentioned earlier has actually grown back, and last but not least it seems i've developed some congestion. not sure if this congestion is something sinister or is it just related to poor immune system and or because my energy is so low i'm much more sedentary and stay indoors often.
i hope i've helped answer some questions and i apologize if i've left something out (so hard to remember everything and in order??)

ed

bdee
Posts: 305
Joined: Feb 2009

Thanks, Ed, you've answered a lot of questions. I hope I don't get the cold feeling again, I had it with oxy. But since the temperature is running around 100 outside here I can always go outside to get warm. LOL
My hands and feet have been peeling a long time. Started when I was taking oxi and even though it has been a year since I've been on it, they are still peeling. My hands just started getting worse last week on the CPT11.
I wander how many on this board are taking the CPT 11?

Debbie in Arkansas

taraHK
Posts: 1961
Joined: Aug 2003

Hi. I've just had one treatment of CPT11 -- my second is this Friday. I am doing CPT11 plus Avastin plus Xeloda (the 'pill form of 5FU). I've done 5FU before - and Xeloda before - with and without oxaliplatin and with and without Avastin. So, I am curious to see how I react to the CPT11.

So far, my symptoms are pretty similar to previous regimes: mild fatigue, mild nausea. I do have worse diarrhea than before (controlled ok with Immodium). But, it's only one cycle so far. I haven't noticed anything different with my taste buds...My fingernails are already getting brittle...I had problems with my feet on Xeloda previously and am expecting similar this time....

I'm bracing myself for the possibility of hair loss. I had hair thinning previously. Went to talk with my hairdresser today about wig....Sigh.

Let's be CPT11 buddies!

Best wishes,
Tara

bdee
Posts: 305
Joined: Feb 2009

I need a CPT11 buddie, so I'm ready to join up. Is the pill form of 5FU as strong as the chemo that goes into your vein? I'm taking 1200 mgs of 5FU every other Monday through my port. When it was just 5FU, Avastin and Louvecurin I kept my hair and my fingernails. Just my finger tips peeled.

Good luck,
Debbie

taraHK
Posts: 1961
Joined: Aug 2003

5FU vs. xeloda (pill): that is really something you'd need to discuss with your doctors. My understanding is that there have been several studies which have shown that xeloda is as effective. My oncologist is pretty conservative..The xeloda has its own side effects (feet peeling and blisters, for many people).....

Good luck, buddie!

Tara

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

I have been on CPT11 with Erbitux since April 20th and I am getting my wig tomorrow. My hair really started falling out and it won't stop, so I opted for the wig. My nails are also very brittle and peeling. I take heavy duty nausea meds on day 2 and 3 and they make all the difference. No real fatigue to speak of, just a bit tired by suppertime.

Pat

bdee
Posts: 305
Joined: Feb 2009

I got a wig the first time my hair fell out with the oxy. It grew back grey and curly. Funny I was dirty blonde and straight hair before. What anti nausea medicines are you taking? What is your schedule for taking the CPT11 and the amount? I take 140 mg every other Monday. It is taken along with 5FU, Avastin and Leuvocurin. I take six anti nausea drugs before each treatment. One is Aloxi that is supposed to last for a couple of days, it lasts through Monday and that's all.

Thanks,
Debbie in Arkansas

Bear23's picture
Bear23
Posts: 84
Joined: Jan 2010

I may be starting CPT11 in two weeks. I was just recently on 5FU and avastin. The mets in my lungs did not show a decrease, a little increase. So I've got 2 weeks off to process and do some family things then back to make a decision. The doc is checking my KRAS as well. My question to some of you is " Were you able to work while on CPT11?" I was on FOLFOX for 12 cycles and continued to work. I am a special ed technician working with k-2 students. I usually have my treatment on Friday so I can get the side effects under control and go back to work on Tuesday. Will this still work for me? I did get low blood counts on the FOLFOX and fatigue but was able to keep going. I'm worried about working when school starts up again next fall. I carry the insurance for the family. How tired am I going to get?

All of the info so far is very helpful. Thanks

Bear

taraHK
Posts: 1961
Joined: Aug 2003

Hi Bear,

Like you, I continued to work while on FOLFOX -- although, like you, I had to take a day or two off on my treatment weeks. (Also, I have a fairly flexible job - I take my hat off to you working with K-2 special ed kids - wow!).

I'm only on my second cycle of CPT11 (with xeloda and Avastin). My understanding, from others, is that the side effects are unlikely to be worse than FOLFOX, and may well be better (of course there is a lot of individual variation). The one exception to look out for is fairly dramatic and potential serious diarrhea. I did experience a bit of this the first cycle -- was able to control with Immodium -- but quite a few Immodium! So that might be something to look out for.

Again, I've only completed one cycle but so far the fatigue seemed similar - no worse - than what I've experienced on other regimes. I need a nap each day! But, if I can't grab a short nap midday, I nap when I get home from work, before dinner. Not optional, for me!

Good luck!!

Tara

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

Was away for the weekend, sorry for the delay in responding. When I get the CPT11 they give me Aloxi and Emend, I also get Decadron. They say that they don't typically give Emend, but it works for me. I take one pill on days 1 and 2 of treatment week. I also keep myself on an every 6-7 hr regimen of Zofran on days 1-3. This works great for me. I get Erbitux on Monday of week one and Erbitux and CPT-11 on week 2. My dose of CPT-11 is 330 mg. I would guess that the 5FU is making you nauseous, it made me nauseous as well during my FOLFOX and FOLFIRI treatments, but the same regimen of Emend and Zofran worked. I also took ativan for any breathrough nausea. Diaarhea can be a pain, but Lomotil works for the cramps and frequency.

I work at home as a Nursing Analyst so if I get tired or a little under the weather I take a nap, and they don't mind.

By the way I love my new hair. Wll have to post the new picture soon.

Pat in Maine

pluckey's picture
pluckey
Posts: 470
Joined: Jul 2009

i never knew which drug caused which side effect but:

yes, my sense of taste eroded considerably- carbonated drinks burned my tongue so I lived on Starbucks Iced Green Tea and regualar iced tea and chicken noodle soup- i ate gallons of that as it was the only thing i could semi taste and tolerate.

Never got nauseous but fatigue, fissures/cracked finger nails and sores on bottom of my feet. Nothing the dermotologist gave me for the cracks/skin fissures worked.

Hair - i thought it was the ironotecean that caused it- never lost ALL my hair but most. and not in clumps, jsut kept thinning and thinning and thinning.

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