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Chemo and feeding tubes

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Hi

I was wondering how long it takes to get chemo. My dad is going to do the chemo once a week with radiation. On the day they do the chemo does he then do the radiation later that day. Also, how long did the sickness from the chemo last days or the entire time. Did everyone lose their hair. These are things that he has been asking me. You guys are the best group to talk and ask questions. I don't mean to ask so many but I don't know any place else to ask them.

Do doctors always recommend a feeding tube to start with?

Did everyone out there spend time in the hospitol during the treatment time?

Barry Keith
Posts: 11
Joined: Oct 2009

Pumakitty,
As you'll note on comments, over and over again, CHEMO treatment varies; many different drugs, his Dr should prescibe what's best for his needs.
This,second time around for me, I went through six weeks of carboplatin (spell?) whle undergoing 30 radiation treatments.
For me I had nearly no ill affects from the chemo. I didn't lose any hair, I didn't get nausea, I went in to the chemo room: they give you an IV (if you don't have a PORT) for hydration, some nausea meds then the prescribed chemo. My sessions took about 3-4 hours, he should take a book or he can just take a nap.....Afterwards I would go down to radiation thearpy and take care of that. Keep hydrated that is most important.
I wanted the PEG (feeding tube)this time. After a short time of rads he'll start to lose his taste and appetite....the peg allows the liquid food/nutrition to go straight in you don't worry about the taste or anything. This just gives him that added option should he start losing his taste, and weight, etc. He can still take food by mouth if he's physically able to.
My tube was put in by interventional radiation department. A tiny local and less than 15mins. later I walked out with the feeding tube.

---I should also add that in my case they do a blood test each week; they would take the sample and send to the lab while being hydrated by IV; they check to make sure your platelet counts are at the right level, etc. For me, they noted my blood sugar was high. This brought about, later, me being diagnosed with diabetes. Most people can cram down anything with high cals during treatment to maintain their weight, I can't do that anymore for obvious reasons.........fyi

Fire34
Posts: 350
Joined: Feb 2010

Puma
my chemo was both inpatient & outpatient. I was on carboplatin taxol & erbitux on the oupatient cycle. I spent time in the hospital only because of side effects. I did not lose as much hair as I thought I would. My side effects were mainly form the inpatient chemo 5FU
i had my tube put in after I got to inpatient as I was losing too much weight(30 lbs) I would see how your dad does though. Also if he does not have very good veins for the IVs I would have the port put in. Mine was a dual port(two sides) one for chemo and the other for hydration/blood draws. Never be afraid to ask. Hope this helps
Dave

fbcuthguy
Posts: 15
Joined: Feb 2010

As has already been posted, chemo time varies widely based o the type of chemo. I had 9 weeks of Carboplatin/Taxol as induction chemotherapy. Those treatments lasted about 3.5 hour from IV start to finish. When I went to cisplatin during rads, the treatment was about 6 hours because of the massive amounts of hydration involved.

My hair thinned significantly during chemo, but never came completely out. The rads did a number on the back of my head & neck hair wise. I'm 44 & can't complain much, because I still have more hair than most of my friends!

I got a PEG put in before starting radiation. I am a definite proponent. I had radiation of the "total mucosa" because I have an unknown primary. Between the lack of taste & the difficulty swallowing, I would have lost lots of weight without the PEG. In my experience, the feeding tube can be a tremendous blessing to the family as well. There is no more helpless feeling than watching a loved one melt away.

I finish my last radiation treatment this Friday. I haven't been hospitalized at all during the course of treatment.

Hang in there & ask any questions you may have. I rarely post on the forums because I find someone has already asked my question, but when I have them, I get great support & response.

Rob

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Hi, Pumakitty;

Everyone here is different, but you can learn from all our stories. I am relatively young (53), short 5'3", and I was carrying about ten extra pounds. I have base of tongue cancer which metastisized to lymph nodes on both sides of my neck. No induction Chemo. Stanford and my local doctors agreed on 38 days of radiation, and three rounds of Cisplatin. Radiation over 7 1/2 weeks, five days per week. Each Radiation treatment lasts about 15-20 minutes, and they have been able to shift treatment times around my Chemo.

The Chemo is divided out into week 1, week 4 and week 7. I'm small, so my doctor divided each Chemo treatement into two days, the Monday and Tuesday of each treatment week. Takes me about six hours. Two hours of hydration to start, anti-nausea meds by mouth, shot, and infusion, two hour infusion of Cisplatin, and then an hour of saline flushing as a followup. I take zofran for the remainder of the week, every 8 hours, and I was given compazine to take along with it if I still felt sick. So far, I've completed two of the chemo treatments and the anti-nausea meds seem to be keeping everything under control. I do have fatigue, and feel blah. I am at day 17 of the 38 day rads.

I am flying under the radar here as regards a feeding tube. All the doctors stated that I would not neeed one, and so I did not have one installed. At this point, I have no saliva, no taste and can't eat solid foods. Everything I put into my mouth is like chewing candle wax. Amazingly, I do still have an appetite. I subsist on blended smoothies and shakes, and lukewarm soups that I have processed to a puree and then thinned to facilitate swallowing. I use a lot of Boost Plus (360 calories), protein powers, yogurts and ice creams. I also sip continuously on water or lukewarm green teas. I honestly believe that continuous use of my throat will allow it to stay functional through this blast furnace of radiation. I also know that everything can change overnight, and I still have half of my radiation treatments to go. You can read Micktissue's posts elsewhere on this board. He also went forward without a feeding tube and had one installed during the last week of his treatment. I have lost roughly five pounds so far, and I expect that I will lose more. However, at this point, I still weigh 135 pounds, which is more than reasonable for my height.

So far, no time spent in the hospital. But, the hospital is a 15 minute drive from my home, so it is no burden to travel back and forth.

Hope this is helpful. Best wishes for your Dad and his treatment.

Deb

CajunEagle
Posts: 351
Joined: Oct 2009

hang in there, Deb. Sounds like you're doing great. There's no stopping now, so just go with the flow cause it may get harder. My hopes and prayers are with you, and you're gonna make it just fine.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Like Rob, got my PEG before treatment. Was not given a choice, and very thankful for it- a very definite blessing. The tubes seem far worse than they really are. Got mine in 1/09, and still have it.

As for hospitalization: if needed, I reckon. With me- four days in week #6 when it got too much. 101 is the body temp the Drs. want to know about, when it is reached and stays. Many, here, did spend time in a hospital as part of their planned treatment. All depends.

kcass

bpcomo
Posts: 1
Joined: Apr 2010

I read your comments and they seemed helpful. I was diagnosed with Tonsillar Carsinoma (tonsil cancer) March 22. I have a small tumor on my lower tongue and anoither on my left node. I begin my treatment next Tuesday April 20. Six hours of Chemo in one day and radiation. I did not like the mask experience at all! I am hoping that it will not be as bad during treatment. I got a little clastrophobic and they stated they will give me a drug to keep me down and not get excited. Maybe I will not have to use the drug for long. That would be a bummer for 35 rad treatments! My schedule of treatments are the same as your excpet for the Chemo (I am 6'4" and 230) so I am littl bigger than you are, lol.

I go in Thursday for my feeding tube and I am a little worried about that but not to much. They said I would be in the hospital for up to five to six hours. I have read in some forums where the feeding tube was put in a lot less time than that, makes me wonder.

Please keep me posted as I will you if you don't mind.

I hope to have this thing kicked by end July and back on track to recovery. I am 53 as well and in great shape.

Gods Speed...

bpcomo

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

In my case, like deb's (D Lewis), the chemotherapy was spread out over the duration of my radiation therapy. In my case, the chemo and rads, however, followed surgery. I mention that because I am not sure what role that plays in chemo selected, frequency, and length.

As someone else has reminded, there are any number of factors that dictate not just our treatment regiment but how we deal with it. But as another point of reference, my chemo sessions (Cisplatin) lasted nearly all day long. I would go in for rads first thing in the morning (daily for seven weeks) and then, on chemo days, pretty much head straight for the Chemo Palace (my chemo took place not at a hospital but at a separate enterprise devoted to cancer care).

Cutting to the chase, I would guess that chemotherapy will be an all day affair, and that dad will not be ill immediately following treatment, although he may be fatigued. Unless things have changed dramatically in a short period of time, dad's chemo will include some agents in addition to the cancer killer, agents designed to make both the administration of the chemo and following tolerance of it easier to deal with, including items like benadryl, saline, and decadron or some other steroid.

The steroid may kick in a day and night of hyperactivity for dad (I would spend the next 24 hours in a veritable frenzy of activity). This may be followed by a couple of days of gut-wrenching agony.

Or not.

I was once told on this very site that carboplatin and taxol would kick my butt (I had these later for a lung cancer issue), and that was not the case at all.

Dad may not get cisplatin, and even if he does, he may tolerate it. But in no case should he suffer throughout the course of chemo without respite: his doctors will make sure that does not happen. One has to have hope in order to WANT to go on, after all, and constant agony does not engender hope.

Take care,

Joe

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Thank you so much for the information. We got good news today. My dad's CT and PET scan came back showing that the cancer had not spread. It is only in the tongue and 1 node. We know he will have 35 round of raditation and will find out about Chemo on Monday. They predict his treatment will start in about 2 weeks. At this time they do not think that he will need a feeding tube.

Thank you all again for all of your help. It makes me feel so much better having people to talk with. I promise to keep you updated. My prayers are with everyone and their families.

Kathy

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

Feeding tube: These days it seems doctors are less inclined to order the feeding tube unless they are doing other surgery as well. If there is not some sort of reconstruction going on, it seems, and this is largely based on reading the stuff from people in this board, that doctors and patients are opting not to go with the tube.

I had a tube for four years. But I had some surgery. I would have died without it, and if dad's doctors feel that dad will have some issues with nutrition during and/or following treatment, they may opt for it as well.

Hospital time: Most hospital time that I am familiar with has to do with either dehydration or infection. I do not know your dad's age or physical condition, of course, and these apply, but generally folks manage to get through rads and chemo without the treatments forcing hospital visits or stays (another exception being unnecessary burns from rads).

It may be necessary on occasion to go to the hospital to rehydrate. It may be necessary to see the man in order to get a white blood cell count boost (neulasta or neupogen or some such). It may be necessary to take a break from chemo altogether if platelets drop.

But one would hope that hospitalization is not required.

Take care,

Joe

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Joe- my hospitalization in week #6 was due to infection and the 101+ fever that had been with me for a couple days. As for the tube- my Onco told me I didn't have a choice with my Cisplatin/FU5 delivery: two 96-hour infusions with two pumps that delivered 40mgs of Cisplatin, each, in weeks #1 and #4. Not sure how much FU5 I got, or that it matters. Got my PEG in 1/09, and still have, but am hoping to soon lose it (Pet Scan tomorrow at 9:30AM- if okay, will have the PEG yanked). As you recognize the importance of the feeding tube, so do I, and I do think it is unfortunate that Drs. currently seem to be inclined to avoid them: they make the getting of nutrition so much easier for anyone going thru H&N, that it would seem like a no-brainer to me, and probably you.

Puma- yes, please keep us informed.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I hope all went well today for you.

CajunEagle
Posts: 351
Joined: Oct 2009

Getting the tube pulled is really no big deal. I had my 6 month Pet-Scan two weeks ago, and sat around waiting for them to call me to tell me the results. Finally, I called them and was told that they would get back with me that day with the results. They didn't. A couple of days later, a nurse calls from the radiologists office and says I have to come into the office within the next 3 hours for oncology consultation. I go.....oh boy. Here we go. I head out to the office and pay the 50 bucks co-payment, and the oncologist walks in and says "Pet-Scan was negative. Come back next year". That was it. I'm thinking.......Come on. Couldn't you have told me that on the phone ? Oh well, I'm just glad the results were perfect and slowly get rid of these side effects.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Yes, I'm in kinda the same predicament with getting the results. PS on Thursday AM, and didn't get a call today/Friday, so the weekend will be spent with large wonderings. Do have an Oto appointment next Friday PM, but am thinking I might call them early in the week- as the only thing keeping my PEG in place is this Pet Scan, and getting it yanked next week seems all right. Told the gals in the office at work that it's likely that if I get a call- will not be good. But now you've opened the door to it maybe being okay. My Oto/ENT ordered the PS, so that's who I'll go to for the results. High anxiety times, you know.

Thanks for your caring, Kathy.

kcass

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Kent, we'll all be sending you hope and support over the weekend. You're always thoughtful and helpful to everyone who comes here for help, and your posts articulately reflect your compassion. I've got couple of weeks before my scans following rads and chemo are scheduled, but I'll be in the same boat at that point.

best, Hal

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

No, he couldn't have told you that over the phone.
If he had, he wouldn't have gotten the $50 co-pay, right?

--Jim in Delaware

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

Good one Jim. I just got a bill for 6 visits for chemo treatments @ 30.00 EA. No one asked me or I probably would have paid it. Strange that I have not paid 1 co pay to rad man. Strange?????

Steve

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

I am sure my bills are less expensive than some, but for my 7 weeks of rads and infusions, it was 80K (No surgical or scans included)YIKES

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Your right Jim! And Steve = I just got a bill for $1000.00 for copays for my port flush! (They never asked for it at the time of the visit.) Now my copay for a specialist went up to $40.00. :(
I guess they will get $10 a month for 100 months! Lol!
To top that off, my husbands insurance company is now billing us $75.00 per week for family coverage. I guess the insurance companies are getting ready for the Obama Healthcare Plan.
Please don't think I am complaining, just stating the situation. It would have been easier to pay at the time of the visit, had I known. I hate surprises!

denistd's picture
denistd
Posts: 481
Joined: Apr 2009

Everybody's co=pays increased this year, along with a 40% premium co-pay. I spent 20 years negotiating with insurance carriers for my employees, they will now skyrocket the price due to Obamacare, they have no option, it's that or go out of business, which they will do anyway in 2014. Damn shame the whole thing couldnot have been better crafted.

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