Hello My friends,

I can thank you enough for the advice you all have so kindly given me. Thanks to the people in here, my family obtained a second opinion from a surgeon here in LA who basically disagreed with my mom's prior doctor. Basically, he ordered a PET scan and CT scan to confirm that the cancer has in fact recurred. He thinks it has as her doctor thought so. But her doctor had told her that there was nothing that could be done. That a biopsy would break her jaw and even if cancer was confirmed, that there was nothing that could be done for her.

But, this new doctor disagreed and said that a biopsy could be performed because of the space in her jaw. And he ordered test first. Also, he said that if the cancer is back, that there is some experimental drug (dont know the name right now) that is used for lung cancer. Does anyone know the name? or anything about that drug?

Also, when is "time" for a feeding tube? My mom blends her food...IT takes a while..I help her when I am there. Then she sips a couple sips and then runs and takes her liquid morphine because of the pain. She has lost over a 100 pounds and I am worried that she should get a feeding tube. Whenever it is discussed with her, she says no. I dont want to take any dignity from her or insist on anything she doesnt want. It just seems so painful for her to try to eat. Is there a time that a PEG tube should be suggested?

Also, my mom has a fistula dripping under her chin and ulcerated lips. does anyone know of this or experienced this themselves or of a family member? Is there anything that can be done or relief? Also, is there a mouth rinse to help with the pain besides the liquid morphine?

I know I had read before about a baking soda rinse. Is that only for cleanliness? Is there something for the pain and infection in her lips/mouth?

I am just so frustrated watching my mom suffer and feeling like there is nothing I can do. She has been my best friend for so many years and I feel so helpless at times. I am doing what I can do but my mom is suffering. So, I am asking you, my friends in here if anyone knows of anything that could help and when a feeding tube is considered "necessary". thank you again
Much Love,
Stephany

I am relatively new to this life with cancer. My husband began treatments 2 weeks ago and we begin week 3 tomorrow. He has presented the worst side affects earlier than most and when we were at the radiation doctor's on Friday she said that we should consider a feeding tube this coming week.

I have talked to other survivors who had the PEG tubes and they swear, for them, that it saved their lives. My husband and I have discussed this many times. He is also not to keen about the tube but if I were you, as I have done with him, I would very strongly encourage the tube. It is not something that dangles off of you and restricts your movement or ties your down. And when she is not using it she can roll it up and hide it under her clothes. No one will even know it is there unless she tells them.

But the benefits arenumerous and life saving. She can make sure that she gets enough fluids to stay very well hydrated. Just in the last couple of days, my husband and I have discovered that hydration makes a huge difference between getting out of bed and being stuck in bed.

He has only been able to take about 1000 calories a day. This is not enough but it is all that his throat can handle. With the tube we will be able to make sure that his body stays as strong as it can so that it can fight not just the cancer but also the drugs that are trying to kill it.

I know there is a lot of controversy about the tube but it is temporary until she can eat and drink enough on her own to maintain her intake. Then they will take it out.

One survivor told me that what made it worth it for him was the stress relief he got from not having to build himself up enough strength to deal with the pain of choking down the food and water. The relief was well worth it to him.

We will get one for my husband this week, and even though he will not like it, he also knows that the benefits outweigh the detriments and he just wants to try to make it through this as best as he can.

I wish you luck with your mother. Tell her to get the tube and spend her time worrying about other things rather than eating and drinking.

100 pounds is a dangerous amount of weight loss and she is probably feeling weak because of all of the treatment. Having enough nourishment will go a long way towards improving things. You should consult with a nutritionist and have them help your mother devise a plan to make sure that she gets enough calories and fluids everyday. This is just as important in survival as the treatments themselves.

As for your other questions, I have no experience with those things so I have no other advice to offer. I wish you and your mother the best of luck!!!

Cindy

I believe that the drug they are referring to is Iressa. It is slightly beyond experimental at this point (at least for lung cancer). They are doing clinicals with Iressa for other forms of cancer as well.

See: http://www.cancer.org/docroot/NWS/c...Better_Use_of_Iressa_for_Lung_Cancer.asp

100 lbs is a huge weight loss (unless she was 4-500 lbs prior to this. I can't understand why they wouldn't insist on it - this shouldn't have to be your decision to make - that's why these doctors make the big bucks. It is to her advantage to try to continue eating orally also.

Your mother shouldn't be in pain. Patients have the right to adequate pain management - demand it. Use the pain scale to describe the pain levels to the nurses and doctors.

See: http://search.cancer.org/search?q=p...mcancer&restrict=cancer&filter=0

Hey Stephany,
Dan's ocologist ordered his feeding tube to be put in before he started his chemo/rad treatments. He started using it in the third week of treatments. He had it for 5 months and he still lost over 40 lbs. There was a period of time during treatment that he couldn't talk or even swallow water or anything. That lasted for over 6 weeks. He couldn't get enough Boost in him calorie-wise because he has a high stomach and felt full and sick with acid reflux fast. We talked to the nutritionist who prescribed Nutren 2.0 which had 500 calories a can. It was work to get 3 to 4 in him a day, but he could maintain some weight with that. The tube was no problem and he could feed in about 5 minutes. It was a lifesaver for him. May God give you and your mom strength and courage to go thru what comes next. I have read and heard encouraging things about Iressa.
God bless and take care,
Debbie

Stephany,

Please talk your mom into getting a PEG tube. IMHO, it is necessary NOW. Like Gary said, unless she was seriously overweight before, 100 lbs. is way too much to lose. She needs to get proper nutrition so she has the strength to fight this disease.

Has she tried "magic mouthwash" yet? It is a concoction mixed by a pharmacist and several OCF members have had good results with it. Also, maybe she should take her pain meds BEFORE she eats. If the magic mouthwash is used before eating, it has a numbing effect and eating isn't as painful. The PEG is still her best bet, though.

Heather never had ulcerated lips, but she did have open fistulas, one under her chin and one on the side of her neck. Unfortunately, there was not much we could do about them. At first, when the doctors thought they were the result of an infection, they packed them with sterile strips. We had to go to the doctor's at least twice weekly to have the packing changed. When the fistulas got bigger, they stopped packing them and we just tried to keep them clean. When the docs realized she had a recurrence, they said nothing could be done about the fistulas until the tumors were under control. Unfortunately, that didn't happen for Heather. If the doctors can manage to shrink your mom's tumor(s), the fistulas can be surgically corrected. I'm sorry, but I don't know of anything that can be done until then.

Rosie

stephany,
You've really got to talk your mom into the feeding tube. Even with a tube, my mom has lost 50 lbs, but without it she wouldn't be eating anything. she really didn't want it either, but i know she's glad she made the decision to get one after everything was said and done. As for the experimental drug, i agree with gary -- it could be Iressa. My mom started it about 1.5 years ago. i think several hospitals throughout the country have been using it for oral cancer pts. -- and the results have been promising. I'm glad that you went for a second opinion. I wish I could help with info about the pain and infection, but I had a real hit and miss situation on my hands when it came to that. Trying to get the meds and pain in harmony was, and still is, a work in progress. I wish you and your mom all my best. Please take care of yourself as well. It's important that you stay on top of your own well being too.
Regards,
D

Thank you Cindy, Gary, Debbie, Rose, and "D":

I cant thank you enough for the responses. My frist question is what is the "magic Mouthwash"? She does take the roxycodone, or whatever it is called, the liquid morphine. Is there something else that she could try?

My mom has lost about 100 pounds to get her down to 108. At least that much. Not quite sure exactly, but about a size 14-16 to a size 2. I did bring the feedign tube up wtih her today and she got angry at me and wrote me a note that she will manage her own health care...Something to that effect, she appreciated my concern but she is very adamant about NOT getting a tube. I feel so bad for her. But what is my role? She wrote me a note asking me NOT to harp on her. So, I imagine the best thing is to just sit back and let her make the decisions.

Rosie. My goodness. So Sorry for all you went through with your daugther. My heart pours out to you. My mom is in a very similar situation, the fistula under her chin just continues to drip constantly..with this greenish yellowish fluid. Her lips are so badly ulcerated, I feel awful.

Gary, thank you for the links regarding IRessa. I will encourage her to try Iressa if the doctor suggests it.

CIndy, I took your advice and suggested what you suggested to me to my mom..Telling her that she should have to suffer, etc...But it didnt go too well :-( She, for some reason is strongly against it.

The other question I have is that she never smiles and is basically miserable 24/7. Does anyone have any suggestions for mood enhancements?
I guess I am the daughter trying to find the "fix" which has been very hard for me. She is running more tests this week, so we will see. But both doctors feel there is a recurrance and that her tumor may have spread to her lips. Or is common to get ulcerated lips from the treatment/radiation?

Thank you again Debbie as well. I am so glad to hear that the feeding tubes have worked for your loved ones. I really appreciate you all in here so much! I will pray for you all

God Bless
Stephany

Stephany,

This is going to sound harsh and I am not recommending anything that you know in your heart won't work. I am just going to share my story with you and maybe there will be something useful.

My hard-headed, I can take care of myself, husband knew for almost 3 weeks that he had a lump on the side of his neck. He never said a word to me about it. He has never explained why but he uses the excuse that he just thought it was a swollen gland and that eventually it would just go away.

Finally, late on a friday afternoon, he asked me to look at his neck. My immediate reaction was call the doctor. I told him to insist that the doctor see him right away. He didn't.

When he finally went to see the doctor she suspected lymphoma. She sent him to an ENT. None of these appointments did he make very quickly while I was nagging and pushing him to get in sooner. The doctor would just say he didn't have an appointment for a week or so and my husband just said ok. I, on the other hand, was angry and confused. I really thought that he needed to get this thing checked out right.

He finally went to the ENT and that doctor decided he needed a CAT scan. Another week before the scan could be done, another week before the follow up appointment with the ENT for the results. Then he was sent to the lab for a fine needle aspiration. Another week for those results. Negative.

At this point the ENT is scheduling surgery to remove the lumps. My husband just goes right along and at this point I finally blew a gasket!

I told him that before he let anyone cut on his neck, he needed a second opinion. But NOOOOOOOOOOO, he said this was fine and he was scheduled. I was also at that time getting ready to go in the hospital myself for a hysterectomy.

So now weeks have passed and he is all ready to give into this surgery and I am nagging and nagging about this second opinion. Friends are saying to me that it is his health and his body and he should be able to make whatever decisions he wants. So I tried to back off. But I couldn't. I just knew that something wasn't right.

Finally I told him that he could do a second opinion or I would have the divorce papers ready for him to sign. I basically told him that I could not live with this craziness of not asking someone else what they thought.

I was extremely serious and I think that he knew it. The next day he gave in and I found another doctor. Within a week the fine needle aspiration was redone and it was cancer.

Today, when he tells people this story, he prefaces it by telling them that I saved his life. I don't know if I would say that but I just had to get it through his thick skull that sometimes logic is right and sometimes you just have to follow it like it or not.

The truth is that I would not have left him but I also would not have let it go either and he would have had to step on me and watch me go to jail for making a scene had he tried to go through with the original surgery. Would that have been the right way to handle it? I don't know but I did know that it was the wrong answer to go along without making certain of what was going on.

Since then we have constant fights. Sometimes they are vicious to the point of not speaking at all for some periods of time. But I can see this thing from a place that he cannot and I am a logical being. So if we must fight, then we must. And if he stays angry with me for a long time, then so be it. I know, like raising kids in a way, that they might profess to hate you now because you are making them do things they don't want to do, but when it is all over and they have survived and live many more years beyond the last treatment, they will know that it was my love for them that fought against them so hard just to get them to the place they always wanted to be.

I offer this because the situation you are in is a very difficult one. Only you can decided what lines you are willing to draw in the sand and how important the outcome of those divisions are. Use the doctors when you can as your backup. They are good at reinforcing what you preach. Check with the doctors to make sure that you understand the best thing to do and/or all of the options that are available. Then use those tools the best you can to guide your mother in whatever way you are comfortable.

Be aware that there are some who will never give in, never listen, and never change. If that is the case with your mother then you will have to support her the best you can. It does not mean that you can't mention it or let her know of your objections/concerns.

I wish you all the luck and tell your mother that being stuborn under most circumstances is an admirable quality, but the beast she is fighting can be even more stuborn and will take advantage of every opportunity you give it. Without enough food and water, not just in quantity but also quality, the good parts of her body are fighting like a boxer with his hands tied behind his back. She needs to fight the beast with everything she can and that includes healthy, hydrated, nourished, good cells that can beat the hell out of the bad guys.

I am praying she will listen to you.!!

Good Luck and take care of yourself.

Cindy

Cindy,

Thank you so much for your story. It has really helped me. I am also so encouraged by your story to be strong, as you are. I admire that about you. I am weaker and cry all the time and am finding this situation so difficult to deal with. The hard part is that when she asks me to back off, I feel I have to respect that. And I feel that I need to respect her wishes. But, then I am conflicted with wanting to do everything I can do from my part, which is encouraging her to get the feeding tube. It was a struggle to get the second opinion with my mom, as it was with your husband. I am happy to hear that he received that second opinion.

How is your husband doing now? How are dealing with everything and your recent surgery? I hope youa re doing ok. Did your husband's cancer start in the tongue or in the lymph node in his neck? I hope he is doing ok.

What you said is so true about needing the nutrition to fight this disease. But my mom is stubborn as you say. I admire your strength Cindy. I hope I can learn from you and be stronger.

Thank you so much and please let me know if you want, how your husband and you are doing, as I will be praying for you and your family.
Much Love,
Stephany

Cindy,
Thanks for sharing your story in such detail. I too was pretty hard headed and delayed going to an ENT for quite some time. My only outward symptom was my snoring patterns changed when the tumor got large enough to choke me when I was sleeping at night. My wife actually tape recorded me stopping breathing and played it back for me - that's when I realized that I had to get off my ass (and denial) and deal with it. That was quite a few months after I suspected that something was amiss. I had an oral surgeon, dentist, hygenist and a gp (x2) look at it prior and none of them had a clue even though this was one honking big, highly visible tumor (that's why I always recommend going to and ENT and forget about the other 3 I mentioned earlier). I too was stubborn about getting a PEG and as a consequence lost 35% of my body weight. Some (but not all) of my doctors were really unhappy about this situation. In your mother's case almost 50% loss is substantial. In this country we are allowed to go AMA (against medical advice). When my father was alive and dying of cancer his attorney told me that to have him declared incompetent I would have to have 2 separate medical opinions and that was unlikely unless he was unable to communicate! It set me free knowing that I didn't have to be the heavy.

You may want to work with the social worker, staff psychologist and nutritionist to find a different approach to try to convince your mother that a PEG would probably enhance the healing process and get her back to a more normal life quicker and it's not such a big deal.

I too was a bad patient and was angry and in pain a lot of the time. I was tough on my wife and don't even remember half the things I said to her. 2 years later I am still making amends.

From Cindy's and your story describe exactly why most of us here feel that the caregivers lot is tougher than the patient.