I know these are old issues but I would appreciate any help or your experiences.

I am the the caregiver to my spouse who was diagnosed in January 2005 with SCC left later tongue (T2N1M0). She is just about one year out from surgery (MRND) and about 8 months out from the end of chemoradiation (35 doses external beam rad+ 4 doses cisplatin).

She has stomach tube since unable to swallow due to a stricture. She lives on Jevity given through the tube.

To this day nausea/vomiting remains a big problem. She vomits at least once a day. Is this normal at this stage?

I give her a liquid anti-nausea medication throgh the tube. It is called Promethazine (10cc) but it seems to have no effect.

We have discussed this nausea/vomiting problem with both her ENT and radiation oncologist but have not gotten any sound advice or other medication to try to control this problem.

I would appreciate your experiences and input.

She is also still on painkillers: a 100 microgram Fentynal patch and liquid morphine.

Thank you for your help. We appreciate it.

Vin, when I had a PEG I occasionally felt strong nausea and was usually able to beat it back by putting oil of peppermint under my nose, either on the skin, or on a cloth which I then held to my nose. This old folk remedy had the effect of quieting my stomach more often than not. Perhaps this will help your wife. If it works, it is better than adding yet another drug to the mix.

Hi Vin. I am going through the same thing with my husband, who is just halfway through chemo and radiation treatment. He has not been able to beat the nausea and vomiting, so we are in the process of trial and error to determine what the culprit may be. He also has been using Jevity and as of yesterday, we stopped that and started using Ensure, to see if the Jevity was the problem. He has gone about 18 hours now without vomiting, so I am keeping my fingers crossed. The problem is, I still won't be sure what the source is, because he also started a different anti-nausea med two days ago (Dexamethasone), and on top of that, I stopped the Zolfran med last night, as I started to suspect it as well. I guess if the vomiting stops, maybe he can try the Jevity again, to see if the nausea resumes, and so on. It is a vicious circle. Currently, my husband takes Ativan, Reglan, and Dexamethasone. As I stated, I stopped the Zofran last night, and am thinking it may have been the culprit....we'll see. I wish you luck. The constant nausea/vomiting sure gets in the way of trying to tolerate everything else. I actually ordered a product over the internet last night which was mentioned by one of the nurses in the oncology center, but that I couldn't find anywhere locally. Called "Queasy Pops." I am not really expecting that they will help, but you never know. We are searching for anything at this point. We did try the peppermint oil as Joanna had suggested to me in an earlier post. It helped me (ha ha) but not my husband. I hope you can find a solution.
Michele

My husband has a J-tube with pump because of a previous stomach surgery. We have to very carefully increase the rate of feeding to prevent nausea/bloating. He is at 180ml/hour now and it takes about 8 hours to finish his feeding, which we do at night. I know this may not be your method at all, but maybe if you cut down the rate/amount of liquid per feeding and do it one more time a day it might help, putting it in slower and a lesser amount. We were told to also remain upright and not lay down for at least an hour. Another old trick for nausea is to whif on alcohol swabs or just open the bottle and whif.

Does anyone have any knowledge about the rate of feeding into a G-tube? My husband prefers to have his feeding done slowly, through an automatic pump versus bolus feeding. Consequently, he gets fed anywhere from 70ml/hour up to 120 ml/hour about 18 hours of the day. Most of this time he is laying down. Does anyone have an opinion as to if this (slow feeding and laying down) would contribute to nausea? We figured with the slower rate it wouldn't matter if he were laying down.
Michele

Joanna,

Thank for your reply and suggestion about the peppermint oil. I will suggest it to her and we may want to try it. Can I ask a question. How long after the end of your treatments did the nausea go away?

Thank you,
Vin

Michele,

Nausea and vomiting was also a problem for us during the radiation/chemotherapy treatments. We also used several meds such as Zofran, Ativan, Compozine, Enzement (spelling ?) but we were not able to control the nausea/vomiting.

We also had reglan but we did not use it since we had too many other meds. From end of July 2005 we decided to stick to the Jvity 1cal which has about 265 cal per can. Jevity was the liquid food she seemed to tolerate the best. Plus we were able to get via prescrition and our insurance plan covered it.

The nausea/vomoting after the end of treatments does get better but it seems to go in cycles. There are periods of no nausea/vomiting when we used no meds for weeks and and then there are periods of constant nausea and vomiting when we are using Promethazine several times daily.

Thanks about sharing the info on the Queasy Pops I will look that up on the internet.

Thank you for sharing your experience and I do hope that you will find a solution. Please let us know if you do as we are interested and grateful.

Hang in there as things do begin to get better with time. Best wishes to you and your husband.

Vin

Vin, I'm so sorry to hear your loved one is still having problmes with nausea and vomiting. I had some problems with that semi-regularly through October, which was about 5 months out. And still VERY rarely (maybe once a month) I have a problem.

For me, after the nausea of the chemo wore off, I think the main problem that triggered the vomiting (and still can) is phlegm caught in my throat right around where it triggers my gag reflex. I think this becomes more of a problme when you can't swallow your own phlegm easily (which is also true for me) and I still do a fair amount of throat clearing and spitting each day to prevent it building up in the back of my throat and making me queasy.

As others here have mentioned, after feeding with Jevity, I was (and am) a little more vulnerable to being queasy for about 1/2 an hour too. Until recently, I fed myself one can at a time using the syringe but just letting it go in from the syringe at the rate it wanted to--not using the plunger to push it in. Now I can do two cans at a time three times a day as well as a can late in the evening--basically it's more like having regular meals and my stomach seems to have adjusted quite well.

I also think the queasiness was aggravated a lot when I was on prescription painkillers. They totally killed my appetite and just made me way more vulnerable to nausea I think. I know when I went off those was also around the time it became very rare for me to get nauseated enough to vomit. I'm wondering why your loved one is still on such strong painkillers 8 months out. It seems to me if she could get off of those (which may unfortunately involve more nausea temporarily as she cuts down--you should definitely ask her doctor about how to do that, not just do a cold turkey thing), she might be way better off in terms of the nausea. She's also almost guaranteed to have more appetite which makes the whole tube feeding thing lots easier.

Nelie

Vin - Yesterday we stopped the Dexamethasone as well as the Zofran, because my husband has continual problem with hiccups as well, and I read that the Dexamethasone can cause hiccups. They are almost as aggravating and frustrating as the vomiting! There doesn't seem to have been any difference with nausea after stopping it, hiccups are still occurring as well. I am beginning to wonder about all of it! I think you have a point about the phlegm, Nelie, as numerous times my husband's vomiting seems to be brought on when he is trying to clear his throat. Plus all of the meds would almost have to make a person nauseated. And if it's the phlegm causing it (at the point when it's not or shouldn't be the chemo causing it), then the meds won't help with that problem. I still wonder about the slow, continual feeding by pump - maybe that is a problem too, I don't know. It is very exasperating as everything is a guess. I'm sorry to sound so crabby, I guess my nerves are starting to show through. I just wish there was a clear cut solution just one time to at least something. If we come up with anything, I will surely pass it on. One other question though - can the radiation itself cause nausea? The RO says no, unless it is the stomach area being treated.
Thanks and best wishes to all of you as well.
Michele

Hi Nelie,

I am happy to hear from you. I hope you are doing well. I had been away from the forum for while tending to my wife. She has still alot of problems with phlegm and she chockes because she is unable to swallow the phlegm and it does trigger her gag reflex.

Likewise she does a lot of throat clearing and spitting evary day to get rid of some of that very thick phlegm. I spoke to her GI doctor today and seems to think that the phlegm is the cause of the nausea.

He suggested that she bend her head down when the phlegm backs up in her throat to make the phlegm easier to swallow. Because of swallowing problems she had her second esophagus dilation today because she had a stricture which was found through a swallowing test a couple of months ago.

The GI doctor says she should be able to eat soft foods now. We will try and see.

We also feed her one can of Jevity at time through the siringe without using the plunger so that the Jevity flows at its own rate. Sometimes I mix the Jevity with a 1.5 ounce container of Benecalorie so she gets another 350 cal per feeding. But sometimes she vomits right after the feeding.

I also think that the nausea is aggravated by the pain killers. According to her ENT she still has a lot of irritation in her mouth from the chemoradiation and the pain is still a 4 on scale on 1 to 10 while she is on the painkillers. Her pain management doctor says to continue to use the painkillers.

We are going to see the pain management doctor in a couple of weeks and we will see what he recommends about continuing the use of the painkillers at this stage.

It has been a rough road for us both physically and mentally. I still have to fight bouts of depression. I count my lucky blessings to have found this site and the very caring and wonderful people here that are so kind and willing to help.

Nelie, I really appreciate your help and input.

Vin

Vin, from one caregiver to another- who has been at this for a year now-here's a big hug and a pat on the back to you. Remember you are your wife's best advocate and her support. Come home with fresh flowers, hold her hand and look yourself in the mirror as many times a day as it takes and say "We can do this together". Keep after anyone who you think can help. Amy

Michele,

We are 8 months from end of chemoradiation and the phlegm is still a major issue. It's a really thick mucus that gets stuck in the throat and triggers the gag reflex. I have to agree with Nelie. At this point we feel that the phlegm is the cause of the nausea since all treatments have ended.

We use a lot of Robitussin which has Guafesenin (spelling ?) which is supposed to make the phlegm thinner and easier to swallow. But then the mucus accumulates in the stomach and again it triggers nausea.

Some on this forum have suggested taking a daily water intake in ounces equal to the person body weight divided by two. So if the person weighs 180 pounds the water intake should be 90 fluid ounces. This should be done in conjunction with doubbling the daily dosage of Robitussin which would then cut the amount of the mucus by half. Of course this should be discussesd with the doctor.

Regarding the slow feeding, our chemo doctor advised us to feed in small daily does as this would be easier on the stomach. We do one can of Jevity per feeding and sometimes a half can but there seem to be no change with respect to the nausea. Sometimes I just give water and meds though the tube and it is immediately followed by vomiting.

At one time I used to keep daily records of Jevity intake, water intake and meds given to try to understand what triggered the nausea. For us the nausea comes and goes. It seems to be erratic. But I feel the causes are the mucus and the lingering side effets of the radiaton and chemo. One of the forum members said and I will quote him "Radiation is the gift that keeps on giving." It's absolutely true.

Regarding your question as to weather radiation can cause nausea, I will tell about our experience.

When we were during the 7 weeks of treatments (radiation and chemo), our Radiation Oncologist would tell us that the nausea was caused by the chemo and Chemo Oncologist would tell us that the nausea was caused by the radiation.

Both the chemo and radiation have a poisoning effect on the body which can trigger the nausea.

My wife also had XRT in conjunction with cisplatin for chemo. She had both nausea and vomting after and during the infusions.

We never tried Dexamethasone. Our experience with hiccups has been just about nil.

Michele, there is something that doctors do not tell you that may happen after the end of the treatments. We thought that there would be a gradual improvement in health. Instead the opposite happens as experienced by other members on this forum. For some as in our case, there is a gradual decline in health followed by a gradual weight loss for several months following the end of the treatments. At times we got very worried because we had no idea why this was happening.

But then I posted our experience and I was reassured by other members that they also got sicker following the treatments. I sincerely hope that this does not happen to your husband. Thank you for sharing your experiences we appreciated.

Vin

Hi JAM,

Thank you for support. I felt a lot better after reading your post. I really needed a big hug and pat on the back today. I also send my support, a big hug and a pat on the back. Likewise I have been a caregiver two my wife for over a year since the diagnosis in January 2005. As caregivers, we understand the emotional and physical strains we undergo in tending to our loved ones because in addition we may jobs and or businesses to attend to.

For me it's been the hardest thing I have to do in my life. It takes a lot of strength, courage and patience to be a caregiver to a cancer patient. Plus a lot of their anger is directed to us so we have to take the brunt of it. My wife has fared better than I have but she is also a lot stronger than me. I have been there for her every step of the way.

We got alot of help from our children especially during the surgery and follow-up treatments, but they are grown and have their own lifes to take care of. They have been wonderful.

Again, thank you for the hug. I really appreciate it.

Vin, we had the same exact responses from our radiation oncologist and chemo oncologist - each one saying that the other treatment caused the nausea. The chemo oncologist said it again today. But regardless, the thing to be done is find a way to minimize it (the nausea) as the treatment must go on. I do appreciate your sharing your experiences with the nausea as we were starting to think his problems with it were excessive, as the doctors act as if the meds should be taking care of it. However, I believe the Cisplatin is a very strong regimen which some have more trouble with than others.

I have been trying to keep in mind and "gently" letting my husband know that even after radiation he may be feeling pretty rough, hopefully that will not last too long. And you are right, the doctors did not relay that information to us other than to say that he will need time to rest up after the Rt is done (as he may need surgery after, but we hope not). I have read of your wife's and others' experiences following radiation and it seems to be common to most. I guess they (the doctors) don't want to put any ideas in anyone's mind, so as to not have a patient "talk themselves into feeling bad." I can understand that but it is unfortunate that having to go through such grueling treatment, you would like to think that once the sessions were over, you would start improving gradually from that point instead of feeling worse.

I have quit (this weekend) trying to determine what is bringing on the nausea, as it seems to be a different situation each time, and erratic as you said, making it very difficult to pinpoint an exact cause. We are starting into the third week past the last round of chemo, and things have calmed down, so I am pretty convinced it is just the chemo for the most part causing the severe nausea for the 2 weeks following, but also from phlegm, radiation, meds, nerves, etc., as the nausea is continuing although not as bad 2 wks out from chemo. We are just trying to deal with it and move on, although that is easier to say this week since it (the nausea) has calmed down a bit - next week I will be frantic again, as third round of chemo is next Tuesday.

Anyway, thanks - it sure helps to know there are people out there to talk to about the 24-hour experience of cancer versus the text-book version.

Michele

Michele,

I did not mean to imply that your husband will feel worse after the end of the treatments. We belong to a local H/N cancer support group and we were happy to hear from some of the group members that they were able to go through chemoradiation and also managed to work at the same time. They also experienced few if any side effects during and or following the treatments.

Your right about the doctors. In our case the ENT other than saying that the last two weeks of radiation "would catch our attention" he never really said anything about the possible post-treatment health issue because he did not want to scare us away I believe. Likewise our Radiation Oncologist really did not go into issues relating to general patient health following the trteatments. I believe that their approach is to present a viewpoint that makes the treatments seem relatively easy to tolerate. We also got this viewpoint from our Chemo doctor.

In retrospect I feel that they may doing the right thing. If they were to present a different viewpoint that may scare some patients away and would then be doing a dis-service to them.
The doctors' objective is to restore the patient back to health. And I feel that they see some of these health effects (such as nausea and vomiting) as transitory which disapper wih time and they are not to overly concerned with them. For the patient though they more than an annoyance.

Finding the causea of the nausea seems near impossible. But there is a positive outlook in that it will go away with time.

Our ENT keeps telling us "it takes time". He does not say how much time because that is hard to predict. But he seems right from the experiences shared from forum members.

Vince

AngAk,

Thank you for the tip about the alcohol swabs. We will try it.

We have been told by doctors also to increase the number of daily feeding so to cut down on the amount per feeding. We found that this works sometimes and other times no matter the amount of feeding given there is immediate vomiting.

Some members have indicated to follow with the daily feeding regimen and than estimate the amount vomited and add this quantity to the daily dosage so that the patient receives the same amount of calories everyday.

Vince