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Chemo Plan

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Met with the medical ongologist and nurse. Looks like I start chemo next week unless anything comes up.

The Chemo they have planned for me is Cispaltin, Doxcetaxil, Fluoracil then Pegfilgrastim / Neulasta to boost my immune system. I have the handouts the hospital provided but wanted some real life exprience?

I am nervous about the picc line but then I don't like needles (who does:-<). I did go get my hair cut short as the nurse stated i will lose my hair and I did not want to wake to mising large clumps of hair. I know it will grow back but it was a big deal for me since I was happy with my long hair.

Good news I get to do the chemo treatments at the MD Anderson regional care center at CHRISTUS St. John Hospital. So I am hoping I can drive myself or is that just foolishness and wishful thinking on my part?

~ E. Cib

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

First, the picc line: I am not sure why you would have one but if you do have one, be glad, as a needle-hater, that it makes it so you don't need to get needles all of the time. Still, I am curious. Do you have a staph infection or some other condition beyond the chemo application? My picc line was provided so that I could get continuous IV antibiotics for a month following a bout with MSSA (a staph infection). IN any event, the picc line is a rather harmless insert. It does go to your heart, perilously close, at least mine, and I was able to watch it go in, so I know from whence I speak, but it was painless and afterwards the hard part was in not tripping over my IV line. You DO have to worry about maintenance, as you do not want to contract an infection at the site of the line. In my case a nurse came to the house weekly to check on it and in the interim me or my wife cleaned it daily.

I am also surprised that you would be getting Neulasta as a regular part of your regime, as it presumes a precipitous drop in white blood cell counts. My doc didn't do that, waiting until they DID drop and then providing Neulasta's big brother, Neuprogen. But this was a few years ago, so I am assuming that tactics have changed with learning.

I had cisplatin first go round (for head/neck cancer) and found it to be a real bear. Others do not: it seems always, regardless of any particular chemo, to be an individual thing. Me, I found myself hyper for a day or two (they included a steroid in my cocktail) followed by a severe, fetal-position-inducing collapse for the next couple of days. Again, others say they had no problems, so hard to say. We would all agree that hydration is critical, though. And nutrition, however you can get it.

The haircut is smart. I didn't lose my hair during the cisplatin thing, but did during the later carboplatin/taxol deal (for a subsequent lung cancer). I got my hair cut, in fact went for a shave and was fortunate that the barber was a survivor who suggested instead that she would only buzz it. I never did totally lose it, and smile to think of her often.

Good luck. It is, as they say, nothing but a thing.

Hope and Humor!

Take care,

Joe

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Dragons,

I had a fairly rough trot in treatment and was Hospitalized for about 4-5 weeks from week 3-4 onwards. I had catheters in my hand(s) for most of the time and because of the constant flow of drugs i was getting. They do burn out eventually, and they need to keep changing the hand and veins, so my veins took a beating and we sort of started to run out (so I thought too at the time).

At the same time I had just stabilized my weight (loss) after finding a good alternative to the Ensure products, but my Doctor insisted I get a PICC so they could also feed me to get nutrition in somehow (even though as said i had just sorted the nutrition issue out). I would also have made the Catheters redundant. When the nurses found about the Doctors choice, they were all super pissed off about the unnecessary PICC and the attending nurse during the insertion was crying with frustration and sympathy. I wasn't exactly in fighting shape at the time so I lamely went along.

Mine didn't go in right and was kinked up in the shoulder and it had to be removed the following day. I became very sick. I went back to the catheters.

The important thing there is to find the right nurse or doctor to install a catheter (and the PICC for that matter). It turned out my Radiation Doctor was a wizard and I never felt a thing. He has was brilliant and used to come up when I needed. Amazing since it was supposed to be the nurses job.

As Joe says, just be super aware about infection and do all the appropriate cleaning and don't let 'anyone' touch it without gloves & being properly disinfected. I had to stop a sloppy nurse and send her on her way when she walked and started fiddling without gloving up or disinfecting. Don't assume all medical people do the right thing all the time. They don't so learn to be quietly vigilant and don't be afraid to say "Excuse me - but I'd prefer you don't ...(do that because)......".

On the driving yourself to and from, that is an unknown. Some truck on through with hardly a problem while others just can't.

Hope you are one of the former, but regardless you will be fine and you will get through.

Scam

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I had all my treatments at the Katy satellite...and was glad not to drive downtown everyday. And it is SO nice to park in a common parking lot and walk into the building. Very convenient. They had just started offering chemo at CHRISTUS when I started treatments, so many days I was the only patient upstairs. Peaceful, quiet and the nurses are super.

I finished my treatments 4/30/2010, and will back September 16 for follow up of my second CT scan post treatment.

You are in good hands and I wish only the best during treatments...and recovery.
Chuck.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Dragons,
I just want to wish you well as you begin your chemo next week. Mark started on Cisplatin and it knocked him on his a** right from the jump. This surprised people a bit, because usually the first round is tolerated pretty well. He only had one dose, they took him off because of hearing loss. Have they talked to you about that side effect. It is a good idea to get a base line hearing test prior to starting treatment. Mark's hearing loss is permenant and I am happy they stopped it and put him on Carboplatin-Taxol, where he did not lose his hair and he tolerated it very well.

Mark probably could have done these days by himself, in that he too felt pretty good on treatment days with the drugs they gave him...steriods will pep you up for a day or so. Ativan, put him in a dream world that made the day go fast. But I was with him every time. I would not want anyone to do this alone. If you have someone you can ask to join you each day of treatment, it may help in many ways. Mark and I played scrabble or back gammon or read while he got his chemo, which takes hours with all the pre meds.

Good luck...keep us informed,
Kim

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Kim

yes, they briefly talked about hearing loss. I have a consultation with an audiologist Monday for baseline hearing test.

I have friends that can drive me / join me for treatment and my sisters will arrive beginning the 27th and take turns staying with me for a week at a time. Fortunately, I have 5 sisters though one is in Japan (airforce wife) and cannot come since someone needs to care for her boys while her spouse is in Iraq. Plus, a couple friends that live in NJ / PA that plan to come stay with me. I know it is silly and I need to accept help when it is offered sometimes you just want to do things for oneself. Good thought on the games...I had not thought of that.

My sister is buying me a iphone so I can play with it during treatment. And I love to read.

It is great to communicate with people who have been there and really understand and can explain things. Until my family / friends learn all the lingo it is hard to explain it thenI forget who i explained it to. I call it pre-chemo brain. ;-

~ Eileen Cibil

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Chuck,

Since I am going to do my chemo at Clear Lake Satellite good to know it worked out well for you at Katy Satellite. Yes I am glad not to drive downtown everyday, though I imagine the drive from Katy downtown is worse then clear lake. I dislike I-10. Plus not having to pay to park is nice.

Wishing you the best on September 16th for your second ct post treatment.

Eileen Cibil

Lena Rose
Posts: 73
Joined: Apr 2010

My husband had 7 weeks of cisplatin/erbitux and didn't have a picc line. He got his hair cut short before treatment but didn't lose it. (It started thinning after treatment.) Treatment took about 8 hours with the hydration. I would drive him home since he was also given atavan that caused drowsiness. Neulasta wasn't part of his regular regimen-he was given a shot twice when his wbc was too low. He was terribly constipated 3 days after the first treatment-it's so important drink, drink, drink.

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Fluids, fluids, fluids that is the hard one for me.

I say pre-tonsillectomy I had an addiction to caffeine, I am usually a minimum of one cappucino or expresso drink a day. they warned me about dehydration with the tonsillectomy so I gave up the coffee. Strangely I have not craved it. I guess I have other things to take my attention. Anyway I am trying to set myself goals on drinking....

I believe they are givingme neulasta as I already have a weakened immune system per the blood results. I am praying nothing happens with that to delay my chemo start date.

~ Eileen Cibil

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Cisplatin is the rough one. It takes a few days to kick in, not to scare you, but you will feel tired and flu-ish. I have no experience with the rest. Driving may not be good because they will load you up with anti nausea meds which make you loopy and tired. See how your first day goes and take it from there. Wish you the best of luck. Oh, hydrate, hydrate and hydrate some more. This will be the difference from feeling ok to totally bombed out.

Best of luck to you let me know how it goes.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I had weekly Cisplatin and 5FU (Florouracil). The 5FU was administered by what they call a fanny pack. I would go in and get the Cisplatin, the anti nausea and the hydration which makes you go like crazy to flush out your kidneys and would take the fanny pack home and keep it on overnight. Drove myself to every treatment, rads too, and really had no problem until the last week. Got nauseated and could not get over it so a 2 day hospital stay and back to normal. To me no big deal. I had a port and not a piccline.

Best,
Steve

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Chemo was not the rough part for my husband - but he didn't have Cisplatin. He had carboplatin and taxol during induction chemo, then Erbitux and carbo with radiation. He got tired and flu like symptoms a couple of days after treatment and about half his hair fell out. But he actually gained weight during the induction chemo phase. Then came radiation.... THAT knocked him on his arse, and even landed him in hospital for 3 nights (dehydration - which caused his potassium to go sky high).

I hope it goes well and the side effects are minimal.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I had my PICC line put in for induction chemo, and kept it until my last week of chemo-radiation. Dressing and showering is a little awkward, but you'll be able to sort it out. I got a little frustrated, until I was able to consistently dress myself on the first try. For me, the PICC line installation wasn't bad at all. It did seem to me to take a long time to heal. Five months after removal, my PICC "mark" looks just like a very small bruise.

Is your chemo induction chemo, or weekly chemo with rads? I was able to drive myself for the weekly sessions. When it came to the induction chemo, though - the pre-meds made me very drowsy, and I was more comfortable having someone drive me home. Twice, I got my pre-meds infused too quickly, and became very fuzzy headed, and unable to think clearly - this was the Benadryl, of all things. I let me nurse know right away, and she slowed the drip, and I improved quickly. Also, most people I know got chilly or cold during chemo - my center had blankets for patients, but you'll probably want to make sure you have warm socks.

Infusions take longer for PICC line people than for port people. My induction chemo sessions were an all-day event. Although my center had snacks, I did better taking my own food in and putting it in the fridge. One day, my son brought in lunch. At my center, you could have one visitor sit with you (for the entire time, if you wished).

Do Well.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Would advise you to have an alternate driver on stand-by, so to speak. Some will depend on what meds you are on, and also how you are handling the treatments. You got enough going-on with this C-thing, that you don't need the additional hassles from the DOT, etc.

Best of luck

kcass

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Cisplatin, Taxotere, 5FU - nine weeks in three week cycles with Neulasta on the second week of each cycle. Then seven weeks of weekly Carboplatin and daily radiation along with daily Amifostine injections.

The Neulasta might leave you with aching bones and flew like symptoms for a few days the first or second time you have it.

Pretty much the same exact scenario as Steve other than the 2 day hospital stay, drove myself also.

Best,
John

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Pam,

my chemo is induction chemo. I will have a friend drive me the first day and then she can leave if she needs to. The regional MD Anderson is only 15 minutes from my house without traffic so should not be that bad if I had to drive. Plus I have a couple back up friends.

My college roommate lives in PA and called today to alert me to a package. I suspect it is either a blancket to take to chemo or jacket / bathrobe of some sort since she sews and she was asked my size.

I did go out looking for new slippers but alas could only find ugly ones. I will continue my search for fun sexy slippers tomorrow.

I need to get up early as I am having my house cleaned from top to bottom tomorrow so that I can prevent any germs from lingering and prevent any potential infection. .

Hope everyone is well.

~ Ei. Cibil

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Just a side note, you are more than welcome to bring any comfort items that you need. But if your center is like mine was, they provide many of those items.

There was a nice big class closet of sorts that had plenty of warm blankets for you. In addition they had free drinks, coffee, tea, sodas, water, sometimes nutrition drinks.

Each reclining chair had a small TV with headphones.

Bring a snack or lunch...one thing we didn't think of during my first treatment was food. The veterans pulled out food mid-day and it smelled do good. We started bringing something after that.

Best,
John

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

They did give me a warm blanket, sweeet. They had drinks and snacks.
I had a friend drop me off then she came back and brought me lunch and then picked me up at the end of the day. Fortunately, we are near lots of restaurants that do health to go.

I was not alone or lonely as my sister in NJ got me an awesome cancer gift if you will a new iphone, I played with it for 8 hours, my sisters, nieces and friends called and texted me to tell me how to down load free apps, set up my phone. Did not get as far as I hoped but we shall see. With chemo on a pump for 4 more days it will be fun to learn and set it up. I even heard there was a cancer app I need to find out if it is free.

Healing thoughts,

~ E. Cib

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Must be the 5FU that you are getting pumped...LOL, I swear that that stuff permeates through your skin. When I had that and would soak in the tub, my wife insisted I smelled up the house like some herbal tea bag....

JG

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

In getting the directions on using the pump for the 5FU, my Oncologist tells the story of fella that kept calling the Cancer center and saying that the pump was not working correctly and what was he to do. The Doctor told him to "just cut it off, and bring it in to the Center the next morning". Well, He did. He used scissors and "cut off" the plastic tubing.......brought it in the next day in one jumbled mess. Only in Louisiana.

Larry

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Well, he did say cut it off didn't he....

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