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gita Offline OP
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hi all,

i'm in l.a. with my sister who came home 2 days ago from a second round of chemo at the hospital.

it's day 5 since end of this round. she's having nausea and diarrhea for which she's taking reglan and peptobismol. she's been eating less than 2 cans of Isocal (Ensure type thing) per day through the peg tube. that's about 450 calories. she's getting hydrated through iv. she's down to 95 lbs (lost 6 lbs since chemo, 20 since beginning of treatment).

she's going back for another round of chemo in less than 2 weeks and we're wondering how she's going to pull through if this trend continues. the nutrition therapist at the hospital also said this was a serious concern but had no concrete suggestions. her oncologist thinks she's not yet at a stage to require TPN feeding and so we shouldn't expose her to the risks of that.

my sister has had a PEG tube since february (can't believe she's gone this long without eating through the mouth). she has very sore mouth and throat and has stopped even drinking the little bit of water through the mouth that she did before chemo.

questions:

1- is what she's experiencing "mormal"? how long does it take for nausea and diarrhea to pass after a chemo treatment?

2- any suggestions re getting more calories into her? does anybody have experience mixing other high-cal supplements with Isocal or Ensure? or,

3- any higher-cal products to use instead of these two so she can get more calories in as much volume?

thanks for your advice.

good thoughts, healing and peace.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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Gita,

It sounds like your sister is going through the same as all of us. I think she has probably lost more weight than she should but it sounds like they are already telling you this. You are keeping her hydrated via IV and that is good. The calorie count is low. I went up almost ten times that much after I kept losing weight. I am not sure of risks of TPN feeding. I did that for many weeks via a mediport and was not aware of risks specific to TPN. We did it at home and my wife accessed my port when needed.

Everyone is different with chemo and my nausea never subsided until weeks after it was all completed. Is there any reason why she can't take more than 2 cans a day. She should be about four times that amount with the weight she is losing. Any calorie boosting at this point would be fat or sugar. Boost has an over the counter high fat version that is almost twice the calories she is getting now.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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gita Offline OP
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she doesn't feed more because of nausea and vomitting and other complexities. because of the location of the tumor, her breathing is already very difficult. every time she throws up she feels like she's choking. also, her mouth and throat are quite sore and they get worse when she throws up. so, part of it might be her reluctance to put herself through that pain. and, when she caughs (quite frequently), she becomes nauseous.

her oncologist said TPN has high risk of infection and we should use it as last resort only. i'm not sure why this situation does not yet seem really critical to him. today she's only had about 130 calories. i'm very concerned.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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Hey Gita,
Dan had trouble taking his BoostPlus during treatment so a friend told me to talk to a nutritionist. I did and found out that there are many different kinds of nutrition that can be obtained. Dan started taking Nutren 2.0 and we got it from our local NeighborCare and it was covered under insurance. It had 500 calories a can, so he had to take in less thru the PEG. I hope you can get something via PEG that has much more calories per can. Dan used his PEG for about 6 months, and for about 4 of those months he took nothing by mouth, not even water. So I think that part is fairly normal. I will keep you and your sister in my prayers. Things do get better after treatment ends. Dan was not even able to talk at all for about 6 weeks...that was very hard, but he is talking good again now.

Take care and God bless,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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Gita,
Your sisters condition sounds pretty normal to me. Most of us had similar experiences.

There are many reasons for nausea - be sure to let the doctors know so they can try different things. I got nauseated from practically everything -it really wore me out at times - but I am living proof that human beings are more resiliant than you think. I also spent a lot of time choking. Eating became a science into itself and I had to experiment a lot with different techniques, particularly since I HAD to eat orally. Coupled with burns, blisters, thick mucous, constipation, no taste buds, elevated sense of smell. I spent a lot of time laying on the bathroom floor. It sucked and I am GLAD that is all past now.

My doctors also gave me industrial strength antacids and they helped as well. Chemo does a number on the stomach lining and acid balance.

There are some tricks to using the PEG tube optimally as well - like slow feeding, etc. I didn't have a PEG so some of the PEGsters can help you.

I couldn't stand Boost and Insure and puked it up everytime I tried it. I settled with Carnation Instant Breakfast (I could tolerate milk ok) and Hagen Daz milkshakes and it worked well enough.

Sorry you're having trouble with City of Hope. Cancer is in epidemic proportions in this country today. All of the CCC's are very busy. Be persistent. She's already in treatment so that may be a factor as well.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Gita,

You can also use an enteral feeding pump and slowly trickle the liquid through the PEG. This allows the body to process versus loading up the stomach with liquid and regurgitating it. I was a lot like Gary only I was on all fours just before laying on the floor. I eventually went with anti-nausea suppositories since I couldn't even keep the medicine down.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Sounds like what I went through after my 2nd round of chemo. Vomiting was every hour on the hour for 4 days straight. So once I figured the timing of when I got sick I would PEG about a


Dig.7/03 3cm+ lymph nodes & base of tongue tumor. Radical neck dissection w/removal of one neck muscle, laser removal of tumor. 47 sessions of radiation, 2 doses of Cisplatin & PEG tube 40yrs old non-smoker/drinker
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These posts are scaring the hell out of me. What type of chemo drugs make you that Ill? I had my 1st treatment last Monday and I don't feel any different than before treatment. Is this something where I should be waiting for the other shoe to drop? I hope not. I go for round two this coming Monday. I'm on Taxol & Carboplatin. Tell me this doesn't happen to everyone!!!

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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Dan, I had several rounds of Carboplatin and Taxol and was not sick for one minute. Relax - no shoes will drop. You will not get sick on this regimen.

Joanna, who would not kid you

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Dan, don't be scared by others' experience since our response to chemo can vary and I don't think all of us go through the same chemo side effect. Take myself as an example. I had chemo once a week for four consecutive weeks. I could drive back home after the treatment and still ate some soft food. There were mouth sores but with the pain medicince, they were tolerable.Nausea was a problem expected and so before the chemo, I was given an injection to prevent that and before the two meals, there were some anti-nausea drugs to take. I managed going through the whole treatment with only one time vomitting at the dinner table.I threw up the second time when I was in the hospital, a week after I had finished all the chemo.It was easy to think of vomitting when I smelt the cooking of food in the kitchen. So I would stay away from the kitchen when it was meal time. Diarrhea was not my problem at that time and in fact it was constipation that I experienced because of the pain medicince I took. But again the doctor prescribed some medicine to ease the problem. Most of the time it worked but when I couldn't eat fruit or veggies, the problem got more serious.So Dan, if you didn't feel any different for your first time, don't worry about it getting worse the second time. It may or may never happen. Who knows? We are all unique.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Dan, I had Cisplatin and a bunch of other stuff, actually felt hungrier the night of the treatment and ate like a pig, well as much as one could under the cirucmstances. Didn't get nauseous at all, just some acid reflux easily taken care of with Tums, and that was probably becauase of the huge bowl of ravioli I ate.

I remember feeling pretty bizare during the chemo treatment, ordering up a huge tray from the hospital cafeteria (which in iteslf should have made me sick) and having a big meal, while the person 2 chairs down was hurling into the trash can. Never did get nauseous from the chemo, either time.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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Amen!!!

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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Dan,

Keep in mind all my life when I even had tough exams, I felt nausea! When I drank alcohol, other than beer, I got nauseas. When a doctor mentioned I might have a side effect of nausea, it was all over. When I heard about five times that the treatment and medicine(s) could cause nausea, I got a little queasy in the stomach. Even scuba diving if I ever swallowed a mouthful of salt water, guess what happened?

We are all different and my shoe is bigger than yours, too!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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gita Offline OP
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dan,

i'm so sorry that these posts have made you apprehensive. your experience sounds completely different from my sister's. she has never been on good terms with any medical stuff, so probably her feelings about the treatment add to the complexity of the side effects (like ed, i guess). more importantly, she didn't get a chance to regain some of her strength and recover from the surgery+radiation before a pretty aggressive recurrence necessitated the chemo. and she's taking very strong drug combination (cisplatine, dexoteris, 5fuv) which is probably why she's being knocked out so badly. latest update: she was feeling a bit better today and was able to feed a little and keep it down. she's trying and so are we. please keep up your spirit.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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Gita,

It does sound like your sisters situation is an extreme case due to being so close to surgery. I was on only carbo and taxol along with radiation after my surgery and in a much lower dose than I'm sure she's getting for the reocurrance. I had cisplatin, taxol, ifosfomide, and 5fu before surgery. Anything they gave me helped with the nausea. I started taking them before the treatment and continued for 2-3 days after treatment and threw up only once during my chemo. I was on Reglan, Dexamethasone, ABH, and a couple of others. I keep hearing about the great drugs, but now I'm hearing that there were so many that the great drugs did nothing to help. Like poor Ed, I think he got every complication and even added a few to the insert listing!

I was on Ultra-Cal HN with fiber. I never had tolerance issues with it. Someone mentioned 2-Cal to me. I think it has 450 calories per 8 oz can. This guy started it about 2-3 weeks into radiation and actually gained weight on it.

What really irritates me it there's probably not anymore risk for infection with a PEG tube than with the TPN. I have a PEG tube and have since November and have had 4-5 infections with the PEG tube. Part of the problem is me though. I'm still like a little kid, I can't stop picking at it. I'd push for the TPN. I think you get a better variety of choices of formula with that sytem.

I know she'll contine to get better. Keep us posted on her progress.
Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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gita Offline OP
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update about my sister: she pulled through some very rough days, but the nausea finally stopped and for the past 2-3 days she's been able to feed relatively well. we're alternating between home-made foods and isocal and scandishake in different feedings to make sure she's getting enough callories as well as fresh nutrients. she still can't take more than 180ml of anything in one feeding though, so she has to feed every 1-2.5 hours. tiring, but way better than where things were last week. she's also off IV and able to keep hydrated. she's got one more round coming up this week. the task is now to keep up her morale.

good thoughts, healing and peace.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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Hi Gita,
Thanks for the update. You have to take your victories where you find them. The finish is the hardest part. Try to keep her focused on the big picture, which is a cancer free recovery. Many of us went through similar misery and are doing quite well today.

I had to be rehydrated several times myself and it sounds like she is doing pretty well overall. It's a very hard treatment and there is no escaping that.

This is about a normal time for depression to set in. Talk to the doctor about a strategy or medications to deal with that.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Hi Gita,

Thanks for posting the good news. At least her nausea has stopped. Make sure she inputs enough to sustain and heal. If it takes 5 to 6 feedings a day, so be it. She will slowly start to feel better.

Gita, Did I miss it? What is your sisters name?


Wishing you and her the best,

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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gita Offline OP
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dan,

no, you didn't miss it. i haven't yet introduced my sister by name. she hasn't yet agreed to join this board and i can't but respect her wish for annonymity. i'm still hoping that she'll regain enough of her usual strength and outgoing self to join and introduce herself, in her own words. i relay to her some of the exchanges that take place here, so she hears of others' experiences and wisdom and knows some of the stories. i know that most of the times that has a positive effect on her. as i know that the collective support people have given me has been necessary and very positive for me.

good thoughts, healing and peace.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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gita, I understand your sisters position. My wife wanted me to go onto this board when I was in treatment and I didn't as I didn't want to know what was coming. I knew I could deal with whatever happened, but didn't want to have to anticipate what was coming. So I didn't join the board until after my rad/chemo was over and while waiting for surgery. Surgery I knew about and didn't worry as I had had my tonsils out a few months earlier. If your sister is still having caloric problems, I used to mix instant breakfast and milk with my ensure and took it through the peg. Two a day was 1000 calories, and another two just plain was 1700 calories/day. That seemed to stop my weight loss and it was all uphill from there. Will pray for her continued recovery.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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High Cal Drinks:
Drinks, such as Boost Plus and Ensure Plus, are packed with calories and nutrition. Unfortunately, the high concentration in such a little amount can cause the runs, stomach problems, etc. Of course I didn't find this out until after I lived in the bathroom for a week. I also noticed the chocolate drinks caused more problems than the non-chocolate ones. For some reason, I seem to recall that chocolate is a natural laxative, but correct me if I'm off base and it was just coicidence.

Scary Posts:
The very first time I logged in here, I swore off message boards and Internet research forever. Some of the posts left me under the covers crying and my husband bewildered (couldn't blame it on womanly issues). A week later I ventured back on, and now I know to skip the ones that scare me. The second I get that feeling in my chest, I have to skim or skip.

Nausea:
I did not have chemo, but my advice is Emend (a anti-nausea drug). The girls in my support group swear by it.

Different symptoms:
Everyone handles their treatment different. For example, one fellow support grouper said Taxol gave her no problems and she lived a basically "normal" life while on it. In fact, some of her hair started growing back while she was one it. The other grouper recently started Taxol and it left her motionless on the couch for three days. She's now on a relative of Taxol, and she's having no problems whatsoever. So it depends on the person.

Handling Side Effects:
When you contemplate your potential side effects before they occur, I think it is definitely scarier. When you're presented with the actual challenge, however, it amazing how well you mentally accept it. Like I said, I was terrified reading some of these posts. Now I look back and shake my head - I just can't understand how I went through treatment without a mental breakdown (though I was very close many times). Somehow your body gets you to the other side; and if it needs some medicated help, that's not a bad thing either.

Sabrina

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