My Mom is starting to give up. The Chemo Regime is wiping her out. She has been hospitalized more than not since they began the chemo. Between the irratractable vomiting, mouth/throat pain, mouth sores, bleeding tounge, her stomach is killing her from the vomiting and an infected peg tube and choking on her mucous she is feeling that she can't continue. I honestly don't know if she could survive another chemo treatment. They have postponed the remainder of her IMRTs (37 done-3 more left) She is supposed to have 2 more weeks of chemo (1 week on - 2-3weeks off) but she does not think she could make it through another cycle. She is meeting with the dr. tommorrow to discuss the option of stopping the chemo.

It is very hard to find the line when and how to determine if the chemo is to dangerous and when to keep going with it to better the odds of killing any cancer cells roaming. I will be there (in TX) on thursday and I just want to have some clarification before I get there. I know she will be looking to me for some advice.

Has anyone been down this path? If so what choice did you make and how did it work out for you. Is there any other options for her other than this barbaric chemo regime?

Tami
Mom has BOT scc stage 3(was a stage 1 until pet scan showed 2nd small tumor and 1 lypmh node on the side of the primary tumor)

Tami, I can't speak to the medical parts of your question, but I can address the personal parts. When my 84 yr. old Mom broke her hip late one night, she lay on the floor until the following morning before calling us because she did not want to wake anyone up.[She was one tough cookie]. But after surgery and very painful rehab that wasn't working and a continuous stay of 65 days in the hospital, she looked me in the eye and said she had had enough. I thought that meant she wanted to go home, but she fooled me. The next morning she was gone. I don't know how old your Mother is, but I do know that when you get to her bedside, you will need to listen hard to her wishes and try to balance them with what her doctors are telling everyone involved.It's not going to be easy. You will have support here. Amy

Thanks Amy-
My mom is only 59 and was generally quite healthy and vibrant. She went into this very optimisitic thinking she could beat the cancer and do it while she was working full time in a very high pressure job. Of couse none of us expected her to have such a horrible time with the chemo. We knew chemo was not a walk in the park but had no idea it would turn to this. I will be calling her dr tomorrow to schedule a meeting with him when I get to TX to discuss the options and see what his thoughts are. I will also listen to my Mom and will respect her wishes. Just not sure if this is the time to pep her up and try to motivate her to stay on track with the chemo or if I should let her throw in the towel on the treatment. It is such a critical decision. Thanks for your response and support.
Tami

Tami, now that I know your Mom's age[she is 6 yrs. younger than I am] I would tell her to fight like HELL, unless there is something in her diagnosis that counteracts that. Maybe part of this is stemming from the way you have described her-my guess is that a person in a high pressure job is very accustomed to being IN CONTROL and she has lost that at this point. You are in a really tough position, being a daughter and a person who will have to express your thoughts and feelings about the rest of the treatments. I do not envy you one bit-but I do hope you will keep talking to us on whatever subject you need to. Amy

Tami,

What type of chemo drugs are they giving her? Are they infusing anti-nausa drugs prior to the chemo drugs? Are they sure it's the chemo or the radiation thats making her so miserable?

Please keep us posted on what you find out in TX. Remember to write all your questions down ahead of time. You never remember them all when you see the doctor. If possible take another person along with you.
Take the time to research some of the older postings on the site. Go to the top of the page and hit "search", type in a search word and you will be able to review many postings that will help you. The more knowledge you have the better prepared you will be during the rough times ahead.
Remember radiation is the gift that keeps on giving. The synptoms probably continue to worsen for a few weeks after radiation ends. Rule of thumb is one month recovery for every week of radiation. IMRT usually results in fewer side effects than trational radiation. I was lucky and had no side effects from 33 treatments of IMRT.

I have been on chemo for 15 months and have only one side effect. I tend to tire easily. No nausa,
no hair loss, etc. I was one of the lucky one in that department.
There is light at the end of the tunnel, you might not see it yet but I know it's there. Your mom will learn to adjust to her new life, you are going through the worst part of the journey right now. Tell your Mom for me that "She Will Get Better" hang in there and she will do fine.
She is lucky to have you as one of her caregivers. Your love for her leaps off your posting.

All my Best, Danny Boy

Tami,
I think that your mother was unrealistic in her expectations. Most of us were totally disabled for a time. I was off work for almost 2 years.

It is not a good thing to not be able to complete treatment. Some here have had to take short breaks, but my oncologist tells me that completing treatment is vital to survival.

I was supposed to have 3 Cisplatin infusions and they shortened it to 2. I did have a very rapid response to the radiation and my medical team all agreed that I could get away with it. If they had told me it would have made a difference in my survival odds I would would have went ahead with it in spite of how ill I got.

It is a brutal treatment and many (including yours truly) suffered immensely (I am a year younger than your mother). I am fully recovered now and back to work.

The doctors need to do a better job at managing her side effects. Nausea can be caused by many different things so they need to do a process of elimination.

I could really use help with making my list of questions for the docotors (both rad and chemo drs).

I have been thinking about this idea: Having her finish her last 3 imrts and then cancel/hold her remainder chemos from the current oncology group. Then send her down the MD Anderson for another look and future chemos (if deemed necessary). They may be better at preventing the horrible reactions and treating them right in a Cancer Hospital vs a General Hospital.

As far as my Mom's treatement regimen it is:

IMRT x 40 (37 down with 3 left). The first 20 were once daily and the last 20 were twice a day x 10 days.

Chemo: The original plan was: Docetaxel/Taxtore, Cisplatin, 5 Fu. They wanted her to have this 4 times with a 2 week break in between each. She had a port inserted in her chest prior to the chemo. She goes in on a Monday and stays for the day while they inject the first 2 drugs, steroids, anti naseau stuff, then she goes home with the flurocil while it is pumping for 5 days. On Friday afternoon they pull the FU. After the first chemo run and due to how sick she got and the level of toxicitity the decided to pull the Docetaxel from the future chemos. They ended up waiting 3 weeks before doing the 2nd chemo. Her counts still weren't good but they decided not to wait anymore. So she just finished week two last Friday and she is worse than she was after the first run. I know she is at her darkest time right now but she feels she can't do anymore. She is not taking calls from anyone anymore-according to her husband it is from the pain and lack of ability to speak. I also think she does not want me to hear her in such a negative state. (Trying to protect me from worrying)

One important part of her diagnosis is that after being scoped/biopsyed and a CT scan they staged her at 1. (With only a 2 cm or smaller tumor on the left side of her tongue) They felt the lymph nodes were good and the ct confirmed it. The final scan was a PET scan and that is when they determined that it did hit one lymph node on the left and found a 2nd very small tumor on the right side of the tongue.

If you guys can help me with my list of questions and let me know what you think of sending her to MD Anderson after her IMRTs are done I would appreciate it.

Thanks so much everyone......you guys and this forum make this whole ordeal so much less lonely!
Tami

Tami,
I wish I could help you more but your mother's treatment protocol sounds very complex and over my head. You may wish to contact Brian directly for advice.

I take it she is not being treated at a comprehensive cancer center but at a regional hospital?

There are a few basic things I would ask:

1. Is she constipated and is that being managed successfully? If she is on narcotics for pain relief it is almost a given.

And are her pain relief meds adequate while we're on the subject.

2. Is she getting anti-acids for stomach lining irritation from the chemo (especially Cisplatin) like Pepcid AC?

3. How many different types of antiemetic meds is she taking or have access to?

Most of us had problems with our blood counts near the end of treatment. They can do transfusions and have medications (like Procrit)for that also.

You need to ask again about the staging. Her treatment protocol is not typical of a stage 1 or 2.

It's very easy to become discouraged at this stage of the treatment. Most of us were pretty beat up and suffering from depression as well. Negative state is a given. Are they managing that also?

I hope that this helps.

Thanks for the questions Gary....I will add these to my list.

Yes she is at a regional hospital....that is why I was thinking if she does continue with chemo...she might be better off traveling 3 hrs to MD Anderson.

In my previous post I forgot to mention that when they did the PET Scan and found the node it did move to a stage 3. But since the scope and CT did not show it orignally they first classified it stage 1.

Thanks again
Tami

Tami,
Since she is already in treatment MD Anderson probably won't take her.

Stage 3 would make sense of the current treatment protocol. Tongue cancers are especially nasty and require agressive treatment.