Hello everyone
I'm looking for some much needed help/advice. My mom was dx end of August with Stage IV Squamous NSCLC. She received 2 low dose carbo/taxol chemo treatments and 18 radiation treatments when she had to stop due to severe esophagitis which put her in the hospital for 1 1/2 weeks. She was nauseous, vomiting, pain etc. She was deydrated etc. She has been out for almost 2 weeks now and was starting to eat and drink more but now the last several days have been horrible. She refuses to eat much of anything. Will drink a little water. She gags sometimes at the sight or thought of food. My dad is at his wits end. Anything he suggests he make for her, she says no. She has been on anti-nausea medicine including recently marinol. Nothing seems to help. When I bring up food she shakes her head and says doesn't want to talk about it. She saw the onc last Friday and of course that day she had eaten something and we thought she was turning the corner. She won't go back to the doctor and doesn't even want to discuss what could be wrong. I've asked her about constipation since I know that can cause problems but she says she is going. The only other thing I can think of is she has a 50mg fentanyl patch. She is supposed to replace it tomorrow but I told my dad that maybe she should go down to 25mg or not at all to see what her pain level is. She was using it because of the throat pain but she says she is not having much pain anymore. To top it all off, my son has H1N1 so I can't go over and visit or help my dad because I don't want to take the chance of infecting her. The onc and Dr West from Grace both have indicated that the chemo/rad effects should have let up mostly by now (it's been 6 weeks since chemo and over 3 weeks since rad). We don't know what to do. My dad says he won't watch her sit and starve herself to death. I know brain tumors can effect people too but I've been looking for other neurological signs and she doesn't seem to be having any. She is scheduled for more scans on Nov 3rd but at this rate I don't know what condition she will be in. Has anyone experienced anything like this? Does anyone have any suggestions? She was very willing and ready to fight when she first was diagnosed. Not sure if she is giving up or what. I know she still could have quality time left but I don't know what to do to help her when she doesn't seem to want my help or anyones. Please help!
Thank you!!!
Char
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Need your help please!
- By luvmymom
- Posted October 27, 2009 at 9:01 pm · 10 replies
- In Family members and caregivers
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Explore topics in this discussion:
Cancer Constipation Counseling Brain tumors Pain Fentanyl Tube feeding Folic acid
10 replies
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- By cards7up
- Posted October 27, 2009 at 9:07 pm
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I would ask about IV hydration. Ask her doctor for folic acid and B12 shots, these help with side effects and building the immune system. Food is not as important as staying hydrated. See if she likes popsicles or watermelon. It doesn't always have to be water. Good luck and take care, JC
- By Marylou1
- Posted October 27, 2009 at 9:51 pm
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I agree with JC. If you can get fluid down her in some form, that is the most important. Smoothies, Milkshakes, Ensure, whatever she will have.
If Mom is dehydrated, it will also affect how tired she is and even her thinking. Many folks don't realize what a huge part hydration plays in cancer treatment. It's easy to see that you and your dad are at wits end. Keep trying.
Sending good thoughts and prayers your way.
Marylou
- By angel3023
- Posted October 27, 2009 at 10:16 pm
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The treatments and radiation can be very hard on them. They get tired of going through it all. I would try some baby food which is soft and goes down easy for her throat. One of my sisters tumors was laying into her esophacus so it was difficult for her to swallow. Baby food was the only thing we could get her to eat for a while. It is good and healthy so it is better than nothing. Good luck and God bless you all. Cancer can be a horrible battle to fight and one just gets so worn out they don't want to do it anymore. Just let her know you love her and are there for her, She is the one who has to decide if she wants to continue. You have to respect her decision and do what she wants. After all it is her life.
Angel3023
- By luvmymom
- Posted October 27, 2009 at 10:18 pm
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Thank you for your responses so far. While she was having radiation she would eat popsicles and she had some ensures. Now she refuses both. I suggested some gatorade yesterday but my dad said she only drank about an ounce. She has not eaten a decent quantity of food for about 5 weeks. Now she won't even sit with a glass of water by her chair to sip on.
I'm feeling so helpless.
- By cuddles53
- Posted October 27, 2009 at 10:39 pm
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I know this sounds awful but do you think maybe she is doing this because she does want to die? or so you think it is a problem in her brain? it is so difficult to tell not knowing her, or what type of person she used to be before cancer.. she may feel like she wants to give up, and this way she can control it. The fluids are the biggest thing that will hurt her the most as was said above. If she doesn't eat or drink of course we know what will happen. I think a call to the doctor to ask them if she could be checked out for any brain mets, if she will go for it. You can't force a person into anything if they are not willing, but even some counseling might be a good idea, and this could be arranged by your doctor she sees.. No food in 5 week, and now no liquids either is a definite bad sign. I know food no longer tastes good, and I am sorry but for me this went on for months, not just a few weeks after I finished chemo, and radiation. This looks to be much more than this especally when you say even a [popsicle or things she did like before, and she will still not try.
On the other hand a decent quantity of food to you ,may be enough for her body to handle and keep her going. I guess I would suggest your dad keep a diary of exactly what she does take in on a day to day basis,.I still would call and talk to the doctor to see if she could get some IV hydration if she allows it.
Take care and good luck. There is also the possibility of her having a tube feeding put in. This can be temporary and it will allow her to not have to eat until she feels better, but this has its problems too, because any food in her stomach maybe does make her feel nauseated now.
God luck,Sandy
- By sandy45
- Posted October 28, 2009 at 12:32 am
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I had a terrible time eating as well, after treatment, (I lost 50lbs) I had gained from the steroids Nothing suggested ever sounded good. i overcame it by making a half a sandwich that just for one minute sounded good. During the evening made myself take teeny bites, By the end of the day I had finished the whole thing and I actually noticed I felt a bit better.I did the same with many things and ended up pitching at least 1/2 of it but little by little I was able to eat again.That was the ONLY thing that helped me. I hope you can get it to work for you as well.
Good luck
sandy
- By kq182
- Posted October 28, 2009 at 3:29 am
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Hi, I totally agree, it sounds like she is dehydrated, and yes it could lead to her death if fluids do not get in her. I would definately tell the doctor, she probably needs to be in the hospital, I would even suggest bringing her to the ER. Her pain meds might be too strong for her, and with the nausea, she just does not want to eat or drink. Also being dehydrated can make a person not think right or act right. This is very serious, please call doc ASAP and report all that is happening. I will keep her and your family in my prayers, pleased update us after you see what the doctors feel should be done. If it was my mother I would be taking her to the ER. Take care, Huggs, Karen
- By meadowbreeze
- Posted October 28, 2009 at 12:06 pm
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Char:
Has your mom ever tried Emend. It is absolutely the best for that. Four years ago I had my first chemo and was sick as a dog and the doctor gave me Emend and it was a miracle drug for me. Not sick at all. No symptoms at all. I was so darn lucky.
Maybe she can ask for the Emend next time she goes for chemo.
Good luck,
God bless,
Linda
- By simplyklb
- Posted October 28, 2009 at 12:19 pm
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Your mom is dehydrated. She needs fluids. You need to get on the phone with her oncologist's office.
Treatment side effects can last for awhile even after treatment has end. My dad had a real hard time eating after chemo and radiation. Nothing ever tasted right to him.
Your mom may need an endoscopy to see what is going on with her esophagus.. Might be after-effects.
Kristi
- By owesly
- Posted October 28, 2009 at 9:19 pm
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There is a good medication for the stimulation of appetite called Megace (Megesterol). It is a fairly good tasting liquid. It often is made to taste like Lemon Lime. The person with poor appetite can drink a small amount (a couple of tablespoons) daily in the morning and by the 4th day of taking this, it can make some people really hungry. Unfortunately, it does not work at all for some, but its worth a try. Ask your mom's oncologist about Megace. Hope this helps.
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