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2nd Irinotecan Infusion and update

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I had my second Irinotecan infusion yesterday afternoon and here it is the end of Day 2 and I'm already doing MUCH better than that first treatment three weeks ago! There is no way I could go through another two weeks of being bed ridden with nausea, horrible intense intestinal cramps/spasms and dehydrating diarrhea. The symptoms started almost right away when I got home, and steadily got worse. Around Day 6 I thought I was feeling more human, but the worst was yet to come for the next 8 days.

This time, it's like night and day. My oncologist said that it was totally unacceptable to be sick for 2 weeks out of three. So, we changed the schedule. Instead of getting one infusion every three weeks, she is going to cut the dose to half and I will get the half dose every two weeks. As well, I will have the anti-nausea drug Emmend which as those of you who have had it before the pills come in a packet of three. The first pill is a higher dose and you take that an hour before infusion, then one pill in the morning for the next two days. Also, the Dexamethosone really seems to help with nausea too. I was fine yesterday. I woke up about 5:30am and felt a little queasy so I took an Ondesteron to tide me over until 8:30am which was when I could take the next Emmend and Dexamethasone. I was totally fine all day today... even got an overdue Blog Entry put up on my blog.

It's now 7pm and I just finished having a bit of lasagne for dinner and I feel fine. I sort of feel like I might be starting to get a little queasy but I seriously don't know if I'm just being paranoid or if the pills from this morning are wearing off. Next pills are at 8:30pm tonight so I'll be fine during the night.

Now, for the somewhat disappointing news. I think I have mentioned that I do have a tumour on my left kidney. They don't think it's a colon met, but a new primary - kidney cancer. The good news is the tumour is self-contained and there's no concern that it will spread from the kidney. But over time it could grow and become uncomfortable... but that could take years. My kidney specialist/surgeon was hoping that he could refer me to a kidney radiologist who specializes in doing RFA procedures to kidney tumours... but he just heard today that the radiologist doesn't feel I'm eligible. His reason being that the tumour is in an awkward position and he doesn't think the RFA needle can get at it from the back. That's a real bummer because this procedure is non-invasive and we don't need to go under a general anesthesia (which can carry it's own risks). So, my kidney guy, Dr. So, is going to approach the radiologist again and see if it would be possible to do the RFA laprascopically. This is a relatively new way of doing RFA so we shall see if Dr. Liu feels this is a possibility. If not, we have the options of 1) wait and watch to see how slowly the tumour grows and 2) take it out via normal surgery which is more invasive and has a 4-6 week recovery period.

Whether we do it laproscopically or the traditional surgical route... both would require general anesthesia. So that's where the whole medical team will have to be involved. I can not do either option while on chemo.... so we are going to have to wait until the chemo is finished. Also, depending on whether the tumours in the lungs will interfere with a breathing tube. Of course, if the chemo does it's job, the tumours should be shrunk way down and not be a problem. When I had the RFA on a lung tumour, I had a GA and as far as I know, there was no problem with the breathing tube. But, I know they have to be super careful, weight the risks vs the benefits... and at this point, the kidney tumour isn't causing any problems and Dr. So is not concerned at all if we wait. Meanwhile, it's really important that we do the chemo and get those lung tumours back to being small and indolent :)

So, there you have it.... I'm now going to treat myself to a Diet Rootbeer Float ... and then take the evening off computer work and just veg out watching some television :)

Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

I'm glad to hear you're doing better this time! Changing up the dosage and schedule seems to have made the difference for you. Did you know that they now have Emend in IV form? I was told about it 3 chemo treatments ago & was given it that way. It seemed to work better for me than the usual pill form. You might ask about it to see if they have it where you are.

About the kidney.. sounds pretty tricky. I had a friend who had kidney cancer & the tumor was encapsulated in one kidney. Her onc thought the best option was to remove the kidney and take no chances of it spreading elsewhere. Apparently you can live fine with just one kidney. I have a great aunt who is now 98 years old & she had a kidney removed in her mid 30's- 60 years ago! She's still alive and kicking. It wasn't due to kidney cancer, but some other kind of kidney problem that I don't the details on. I just know that she has functioned fine all these years with just one kidney. Just a thought if the RFA doesn't work out.

Take care of yourself and enjoy the evening!

Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

I am so happy for you. What a difference in quality of life a change like this makes! You seem to have an awesome onc. I am glad you are able to eat a little too. Sorry to hear about the lung spot being in a tough spot - these da%$ tumour provide zero co-operation. I hope you enjoy your television; my husband + I watched "Republic of Doyle" tonight. It is filmed in Newfoundland, so has beautiful scenery and good stories. It is supposed to be inspired by "The Rockford Files", which I always loved. Pleasant dreams!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

So glad to hear that your onc changed your dosage and that you're doing better. Love those floats myself and now that I am off the FOLFOX, I've been having one every night before bed!! woo hoo for rootbeer floats! I've been having them with diet rootbeer and sugar free ice cream. So much for staying away from man made chemicals .... hahaha

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Thanks Lisa, Anne and Lori!

It's true... changing the dose has made all the difference in the world. Granted I may be jumping the gun since it's only been two days and the infusion was yesterday in the afternoon... but the difference in these two days is unbelievable. It's as if I haven't even had an infusion... and my friend, Toby, who lives across the hall (and takes my Bridget on her daily walks) says I look way better and am doing so much better than the first two days of last time.

@ Lisa... that is one of the things my kidney surgeon wants to avoid, is taking the kidney out. With all that is going on in my body with the colon cancer mets, and the fact I have already had one adrenal gland removed from the top of my right kidney, he says that the last thing we would want to do is remove a kidney. He is 100% confident that this tumour is not going to spread and the reason we want to remove it is because if it grows more than 4cm, RFA would definitely not be an option. He wants to see if it's an option if done laprascopically... and if not, then it still can be removed by traditional surgery and save the kidney. I guess different thoughts on it... and it's possible that when your grandmother had hers taken out, the options were few and taking out the whole kidney was the more popular option. As he explained to me, yes, people can live with just one kidney... that's proven time and time again with donors who will donate a kidney. But when you already are compromised with other probles (IE colon cancer) you don't want to have to rely on just one kidney because if anything happened to that one, then I'd be in big doo-doo ;)

@ Anne Excellent program, Anne!! Ok, and I do have to promote... one of my best gal pals, Lynda Boyd plays the role of Rose Miller. Rose is the wife of Mal Doyle. She works as the office manager/secretary/techie of Doyle and Doyle. She lives here in Vancouver, but of course films in St. John's... so is gone 4-6 months of the year living there with the rest of the cast :)

@ Lori Hehehe... ok, I KNOW diet rootbeer floats are not the healthiest for us.... but sometimes just having something that tastes great is just fine with me :D After having such a hard time the first go round... I'm just thrilled that I can eat and drink and keep it down with no feelings of nausea or the other end :)

Cheryl

AnneCan
Posts: 3692
Joined: Oct 2009

I love Rose + she is gorgeous!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Ok... I thought I'd put up a picture that shows my semi-alien look :) As I think I have mentioned in another post, the Irinotecan chemo has worked very quickly (first treatment) in my losing my hair. This was one of my concerns... not sure if it was purely out of vanity, or if it was because it is a real visual reminder that I am fighting the battle of cancer. I really don't know the answer, just that I was not looking forward to losing all my hair (us females can be a little on the vain side that way even though, intellectually, we know that our hair does not define us). Heck, when I stop to think of it... my hair has always been a fight in itself... since it has a mind of it's own. Hahahaha... even my hair is stubborn!! .

Oh well, it's gone, and I was prepared by arranging for two wigs that I like... and have found some caps/hats that I've had for eons but haven't worn much... and the soft ones are really comfortable on the nekkid noggin :) BUT, I did notice, woe is me, my eyebrows have not been tended to for eons... so I have two bushy eyebrows! Very noticeable now when the focus is on the face and not on the hair ... so I'm about to head out and get my brows waxed and while I'm at it, a pedicure :D It's a girly day today!

Funny.... the eyebrows have not lost a hair, and my eyelashes are actually a bit longer than they used to be... so a little makeup and I'm good to go :D

Cheryl

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope, and I'm glad you feel better this time!
Hugs! eh?

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

hi Babes.....soooo glad you are coping so far with the nausea....I really hate the nausea....nice price for the emmend....who cares if it works....

wow the irinotecan worked really quickly on your hair....isn't that funny you still have brows and lashes....with 5fu and then with oxy it was the opposite and I lost the brows and lashes....

eat and drink anything and everything you feel like.....

I will not make any bad jokes about the Timmies and hospitals in BC although I must say I had a little private chuckle....sorry....

I hope the kidney can be solved....sounds like you have an excellent team and I know they will comeup with a good solution for you....

ok kiddo....holding your hand and in my heart....

very best love and hugs

mags

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

@ mags ... hahahaha... ok, I have to admit, one can call Timmy's a hero, but seriously! The spin our idiotic politicians put on it is what is criminal. That the Timmy's restaurant that is the cafe at Royal Columbian was BUILT specifically for emergency triage overflow?? HELLO?? And the current government doesn't think this is a problem?? Gee, I'll take a donut with that IV drip, please!

Oh, and yes, that Emmend is a darn expensive med... 3 pills for $116. Yikes! BUT, I have a decent extended health care plan so my patient portion is only $34... just over $11/pill vs $37/pill... but the difference this time where I'm not living in nausea is worth the price!

@ pepebcn ... so glad to see you back posting, Pepe! I know you have been feeling a little down this last little while... and am hoping you are coming back to your usual chipper self!

@ Amy ... I'm with you on that plan! If the Irinotecan can get these little critters back to a tiny size or even zap them completely, then we can deal with the kidney issue which is not an emergency or crisis at the moment. Obviously, they are not going to let this problem just slip under the rug, but as a team they have to figure out priorities and at the moment, working on the lung nodules is #1 priority because we don't want them getting a step up and then grow out of control.

@ Kathleen... thanks my friend! I am still getting used to my alien look, but it is not as bad as I thought it would be. And my onc agrees with you... no sense being sick for your whole treatment period and not being able to enjoy life. So her changing things around has done wonders. Another interesting thing, she is going to be gone for the next 2 weeks, although will be available by email and she has lined up another colleague onc in case I need to talk to someone in person... but she is off to China for a work-related trip. I'll be intrigued to hear about her trip when she comes back because she is obviously open to Traditional Chinese Medicine and anything new that she could use with western medicine. Lesson learned... don't anyone suffer in silence if you are having bad side affects... whether it's just one nasty side affect or a bunch of them. Let your onc know... it doesn't mean you have to give up your treatments, but a change in the dose, or a change in the schedule, might just be the answer.

Hehehe... so I'm being lazy... I haven't left for my girly pampering yet... I better get a move on! :)

Cheryl

mom_2_3
Posts: 965
Joined: Nov 2008

So glad you are feeling worlds better this treatment round. I hope that this regimen zaps those little buggers and allows you to move ahead with the kidney issue. I am really digging the new avatar. I love the hip hop look!

Amy

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Cheryl,
I am so glad your doc is on it and 1/2 your dose and changed your schedule. No need to be so sick my friend. It sounds your doc is really trying to work with the kidney tumor situation. I love it when doctors actually try to problem solve.
You, my friend look beautiful hair or no hair. Your smile is the best.

Thinking of you.

Aloha
Kathleen

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