Hello everyone. My mom just completed only her 12th day of radiation and has also done one of 3 planned chemo sessions with cisplatin. The problem is that it is really getting to her. She has a lot of blistering in her mouth, she can't taste anything, and feels like throwing up every time she eats something. Thus, she is only eating through the PEG tube, which means she isn't getting as many calories but she'll probably start going to 5 cans instead of 4.

She is scheduled to have 40 days of radiation and 2 more sessions of chemo with cisplatin. Her first chemo session made her throw up and feel like crap for a couple of days and she keeps telling me that she doesn't think she can go through any more chemo. Also, she doesn't think she will be able to go make it through all 40 sessions of radiation.

Hi there- I had teh same treatment your mom had plus surgery. I know it is very difficult and taxing on the system. Let her doctors know of her symptoms so they can advise medications etc. I too only used the PEG for a while when my taste and appetite went out the window. I didn't really miss eating because it seemed so unappetising

It is crucial that she complete the reccomended treatment in order to get the best outcome possible in beating this disease. The treatment has been proven to work very well. Just continue to be there for her support her but be firm in that she must do her absolute best to complete the course of treatment.

TRy and distract her as much as possible from her symptoms by trying to give her some comforts that she likes.


Hang in there

Nick

Talk to her doctors. Maybe they can reduce the dosage of chemo to a smaller weekly dose.

Does your mother understand what the outcome will be if she doesnt finish treatment?

She must do the treatments or she will not survive this awful disease. I know first hand how hard it is and I wanted to quit too. If I had quit, I woudl not be here right now. Talk to her doctors and nurses where she is being treated. Maybe she needs some pain meds, magic mouthwash to soothe her mouth. She may need anti depressants, many OC patients need that. This is something she can do, its very difficult, but it can be done.

Hang in there.

Nick, I wanted to mention the anti nausea drug Emend that I have been taking during my treatments. I have had 4 chemo, given once a week,amd 18 radiation treatments and I haven't been to sick until now. Trush in the mouth can be a problem and cause terrible pain but they have given me medication for that as well and the sores in my mouth cleared up. Everyone is different as you know and what works for one may not for another, but you may check with her Dr.'s and change her anti-nausea medicine. I wish you all the luck in getting your Mom to complete her treatments. I know how she feels as I to am so sick and it does get hard. Best to you all, Angel

thanks for all the feedback!

in some establishments you have to become a squeaky wheel to get done what is needed. make her needs and concerns known to those in charge where she is being treated. if they do not offer a solution - repeat your concerns to them. then do it again and again until they respond with something to help. there are so many meds available to help with anxiety, nausea, depression, mouth sores, etc. that there is no excuse for her to have to suffer and wantr to quit without there being something for her to try. remind her that good nutrition and fluid intake will lessen the side effects of treatment so these are vital. she should be drinking as much as possible thru treatment and be sure if she is eating thru the tube that she continues exercising her swallow reflexes because her throat will forget how to swallow if she doesn't and she doesn't want to go thru all of that on top of treatment.

keep encouraging her and be firm that she remain committed to continue in treatment. it is hard to see those we love suffer, but with this disease it is either suffer through treatment or suffer through the disease so encourage her and tell her to keep on keeping on. and then be her advocate and research help for her issues and speak to those in charge to get them to offer help.

Another thing that will help is to switch her liquid food to something with a lot of calories per can -- Nutren 2.0 is covered by MediCare and has 500 cal/can, so she doesn't have to PEG so many cans per day.

Nestle's Carnation VHC has 560 cal/can but is apparently not listed as a PEG food, rather as a "drinkable". Nutren is also a Nestle product.

Hows her white blood cell count? I had a friend that was on Cisplatin and she got really bad mouth ulcers from the chemo because her white blood cell count was down and they gave her the neulasta shot for that and it cleared up her ulcers (she wasn't getting radiation). But, the blisters in your mothers mouth may just be related to the radiation and in that case maybe you could get some magic mouthwash from the doctor to numb her mouth so she can keep swallowing. When I first started losing my taste early on in treatment it was related to thrush - and it can be miserable, so maybe your doctors could look into that as well? There's a million things that it could be but your doctors can definitely do something to make it more bearable for her. Hope this helps some.

I can't add much to what has been said but I had a very rough time with the Cisplatin. They even cut the last treatment (I was on the three treatment plan). I lost over 60 lbs, but back to normal now. It's no walk in the park and not for sissies. Fortunately the human nody is amazingly resilient.

I would recommend, like the others, that letting the doctor know, especially the MO and nutritionist might be a big help. PEG tube feeding can be tricky. Most people have had better results by gravity, drip slow, feeding.

I didn't personally speak to the doctor's but they said they cannot give her a smaller weekly dose due to her height and weight...Magic Mouthwash is definitely helping her and we will continue the treatment! thanks for the info. on the white blood cell count and we will be asking the doctor about that.

Nick,

I'm curious - what is your Mom's body type, if I may ask? My docs never said anything about my height or weight being an issue when they decided weekly chemotherapy was appropriate for me.

If your mom needs help with the PEG feedings please post. I have several tricks that will help her make it easier and cause her less nasuea. I unfortunately learned these things the hard way. Please let her know that there are many people who here that will help her thru this. You both are not alone in this fight.

What did they say about the height and weight being a factor?

No one has ever said that as a reason to do or not to do ANYTHING, much less breaking up poison into smaller doses?

Interested in your response.

I was wondering the same thing. Very odd how height would have a bearing on this. Maybe thats just a nice way saying height and weight when they really mean how chubby somebody is. I was chubby when I started chemo and was given 3 doses but only got 2 because of such a bad reaction.

Christine,

I was a good 75 pounds, or more, overweight when I started treatment and I got weekly chemotherapy. My weight was never even mentioned.

Okay I had told my mom to ask the doctor about possibly having smaller and more frequent dosages of cisplatin like many of you had mentioned. The doctor said the dosage was pre-determined before treatment began based on her weight and will not be changed.

She had her 2nd chemo session yesterday and she said she felt A LOT better than she did after the first. Due to the medications they gave I assume.

Her doctors can adjust her Tx anytime they want and they should if it's to react to a patient's bad reaction. She should never have been set to get 3 doses when most docs now feel very comfortable giving the less toxic weekly doses.

I am not sure that more frequent and smaller doses of Cisplatin make it "less toxic". It is a very toxic drug to be sure. It might be more tolerable in more frequent, smaller doses but not less toxic. The stuff is made from platinum. If your hydration level isn't up to par, kidney danage can result, so adequate hydration is vital. Staying propetly hydtated will make you feel a lot better as well. I had to be rehydrated by IV once in the ER and twice in infusion. It's MUCH better, more comfotable and faster in the infusion unit. Make an appointment first - they don't take drop ins.

Cisplatin works as an alkylating agent that makes the tissue more responsive to radiation. It is most effective an adjunct to radiation.

Some here have been changed over to it's less toxic cousin, Carboplatin if hearing problems have arisen. Treatment plans CAN be changed and/or modified.

Cisplatin has been around for a long while and can add around 13-15% improvement to the survival odds. It has a proven track record and the gold standard when used in conjunction with radiation.

My reaction time to ct peaked in negativity about 2 days post infustion and got better slowly as time went on until the next treatment. I think part of the reason for that is that they hydrate you first before they add the smaller bag of Cisplatin and Zofran.

Wow, when I had talked to her on Thursday the day she had her 2nd round of cisplatin she said she was feeling good. But the next 3 days or so were once again terrible for her. She said shes been constantly throwing up and doesn't plan on going back for her 3rd and final cisplatin treatment. After reading the above post, I have to once again try to talk her into it or get this treatment plan changed.

Nick,

It doesn't sound like the docs have the right anti-nausea drugs. The first two weeks of cisplatin were bad for me too, but after a change in drugs, I did very well tolerating it.

Your Mom really needs to speak up about this. Her life truly depends on it!

- Margaret

Sorry to heary your mom isnt tolerating the chemo very well. Cisplain was very rough on me too. Hope she can have a smaller dose or maybe switch to something easier tolerated. The side effects are pretty bad but its necessary.

One thing you mentioned previously was about your mom's treatment plan being pre-determined before treatment began. From my experience (I am not a doctor or in the medical field), everyone's tx is planned. This is something that can be changed. I know mine was and many others on here have been changed also. The doctors need to be flexible if a patient isnt handling their tx very well. Someone needs to confront the doctor and get the specifics as to why they are saying it cant be changed.

You mother needs to continue tx. Her doctor needs to know she is going to quit due to the side effects.

Best of luck to you and your mom.

I'm very interested in the anti-nausea drugs that worked. I am having my 2nd round of Cisplatin on Wed. The first round was horrible and I really don't want to feel like that again.

Thanks for any advice you can give.

(I was prescribed Metoclopram, Prochlorper, a steroid and Lorazepam. I'm not convinced any of these meds worked).

During my chemo treatment I was given Aloxi for the nausea and at home I had Zofran and Phenergan. I didn't have Cisplatin but I had Carboplatin so my nausea was not nearly as severe as it is for those who had Cisplatin. My first week I was nauseous and throwing up after but then they switched me to the Aloxi and that seemed to help. After that I just kept on top of taking the Zofran and Phenergan and I was okay for the most part.

I didn't have chemo, but i did have nausea and Zofran took care of it.

Zofran didn't do anything for me so my docs switched me to a combination of Aloxi and Emend with follow up fluids and a second dose of Aloxi four days after treatment.

Sorry but nothing worked for me except standing over my bathroom sink and holding my mouth shut as long as I could. Can't say it worked all the time but there were sometimes when it did stop the gag reflex from being in control.

When I was having gagging issues I would smell a bottle of mouthwash. The mint smell would help and it would usually keep me from throwing up.