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.

As most of you know, Barry and I went to Sloan-Kettering for consultation and Barry's currently being treated at Johns Hopkins for his Stage IV base of tongue SCC (as well as right tonsil and 2 nodes) Neither CCC's tumor board recommended as stringent a protocol as is being used on Tami's mom. Both centers recommended 33 radiation treatments for total of 66 Gy dose (no hyperfractionation) plus concurrent chemotherapy -- in case of Sloan, either Cisplatin 3 x or Carboplatin + 5-FU also 3x. Hopkins recommended Carboplatin + Taxol 6X, plus 33 IMRT/tomo radiation for total of 66 Gy. Barry opted to forgo the Taxol, his decision based on its potential for neuropathy.

Results at Hopkins are excellent with this protocol even with Stage III/IVs and they have not seen any survival or control advantage to doing more aggressive treatment .

It doesn't make sense to me to treat a cancer so aggessively that the patient's will to live is broken -- if as good results can be achieved with less physical and mental damage.

I hope that the issues which are hurting Tami's mom can be resolved and she can get back to fighting the disease rather than the side-effects of the treatment ...

Gail

A recent paper out of Japan, while a small study, showed no survival advantage for the three drug coctail being discussed. When you consider the severe reactions to something this powerful and the quality of life issues, I wonder if it wil even be used much in the future.

Tami. All of the above is Way over my head, but I wantto tell you that I am pulling for your Mom and you every day now, and sending your strength. Amy

Thanks everyone.....
I actually had the opportunity to speak to Brian on the phone which helped alot with some clarity. I called her chemo dr. today to schedule and appointment with him while I am there and unfortunately I found he will be on vacation the day I arrive and won't be back until after I leave. I plan to have a phone meeting with him tommorrow. According to my Mom's husband the dr. is considering cancelling any further chemo treatments due to her toxicity. We do not expect her home from the hospital anytime soon. She has not shown much of an improvement since she was admitted on Saturday. They also had to cancel her last 3 IMRT's until she is better. She is feeling very defeated. Thanks again for all of the helpful advice and well wishes. I will keep you posted!
Tami

Spoke today to chemo nurse and they are now using carbo only on a number of patients esp. those with potential toxicities from cisplatin or if taxol was added to the carbo; again they do not anticipate any *significant* reduction in control but much better tolerance of the treatment. All the people on carbo alone had some potential medical concern from the other drugs (such as my husband's with neuropathy and another lady with renal function) as this also has to be taken into account in planning treatment.

"First do no harm..." -- first words of Hippocratic oath.

Gail

Hi Tami,
Please let us know what your mothers chemo doctor tells you. There may be reasons for the treatment he is doing. If not, then it's time to make some changes. Please remember that we're not doctors here and even telling you what our doctors are doing is not intended for you to change your moms treatment. Question your moms doctor and go from there.

I had the opportunity to talk to Mom's chemo dr. today. Unfortunatley all of the doctors I was hoping to meet with when I arrive tommorrow will be on vacation for the holiday weekend. Doesn't that figure!

The Chemo dr. beleives that she can not tolerate any more chemo. He said that her reaction to the chemo is rare (less than 1% he claimed). So they will have her finish her final 3 IMRT's once she is capable and then scan her in 6 weeks to see where they are at. I am hoping to convince my Mom to finish her imrts, recover then go the MD Anderson for further consult. I will see how receptive she is to that.

She has been nauseated/vomiting since friday with very little relief from all of the meds. Her pain is quite high (using Fentanyl patch and some meds through iv pump self dispesed). Her Peg tube is bleeding and having more problems. She has not tolerated food or liquid since being hospitalized. She has no voice left either.

Thanks to Brian and Gary I hit the chemo dr. with quite a few "educated" questions/scenarios. He did not seem to be comfortable with such direct questions and he did not have a lot of answers. Seemed to fumble quite a bit. Hopefully my requests will be met. I guess I will find out when I get there Thursday.

I am aprehensive to see my Mom in such a horrible state. The last time I saw her she was so healthy and vibrant. So I expect it to be hard...but non the less I am excited to see her.

I will check back when I arrive back into NY.

Thanks again everyone and have a nice holiday weekend!!
Tami

Hi Tami,
After reading your last post, in your shoes, I would be pushing hard to get my mom seen at a comprehensive cancer center. Another opinion seems in order with the way you describe her chemo doctor acting and responding. Good luck on Thursday.
Minnie

Wow, I just read this thread-hang in there Tami-It is most necessary to trust your Doc's and watch over them-I am so happy that so many people here are guiding you-positive thoughts your way-and yes, it is heart wrenching to see your parent going through hell. There is no way to prepare, it just plain sucks. Be strong!!

Well I am back!
The visit went quick but it was good to see my Mom. She was/is still in the hospital and we are not sure when she will be released. The 2nd week of her chemo run really did a number on her. On Friday 8/27 they stopped the 5fu. On Saturday 8/28 she was hospitalized. She had irratractable vomiting. It lasted for 5 days and it was incontrolably coming out of her mouth, nose, and feeding tube. They have been feeding her intravenously since. They just reintroduced feeding her through her jpeg yesterday with a very slow drip pump. She is tolerating that ok now with the help of the Zofran. She has terrible IMRT burns all around her neck like a collar, her hands are all black and blue with gashes opening up on the palms (from the chemo), she has mucositis, thrush, and possibly another internal infection brewing. Her whites are around 1000 making her severly neutropenic. They did give her a blood transfusion (2bags)on Thursday. But she is still having a very slow recovery from this last blast of chemo (cisplatin & 5fu-they removed the docetaxel this time due to previous reaction). It is official that they have decided to not finish her chemo. She did 2 out of the 4 that was prescribed. She has gotten too toxic. She has 2more days of IMRT left (double doses). But that has been on hold for over a week now due to her condition. They are hoping to be able to get them in on Tuesday. I have taken some serious issues with some of the treatment she has received and I will post about that later. I need to spend some time with my 3 & 7 yr old daughters now. It is the first time that I ever left them and they are in need of some attention. But I just had to check in with you guys. I missed reading everyone's post while I was gone. I hope many of you are enjoying the holiday weekend.
Thanks
Tami

Tami
I am so sorry your mum is having such a rough time of it. Watching a loved one in pain is very hard.
At least now the Doc`s know she has someone who cares and will keep a check on her treatment.
As much as they try to help, sometimes they don`t really see the person in front of them.
Rest up , and let us know how things go for you.

Marica

Tami, I'm glad you got to see your mom and visit with the docs and sorry your mom is having such a horrible time with the chemo. Believe it or not, she will recover from all those symptoms eventually, she just needs lots of recovery time and the medical support to get nutrients and hydration until she can keep things down, either through the tube or through her mouth.

I feel sorry for myself some days because I still seem to be having a lot of symptoms (mouth pain, can't take anything orally yet) for someone 3 mos out from radiation but I should be thankful, I think, that my rad. and chemo went as well as it did. I also had the severe neutropenia--that was the most scary to me-- and I wasn't able to finish my full chemo treatment either, but I didn't have some of the other severe symptoms your poor mom is going through. So now I feel grateful, instead of whiny, thanks to your post.

I know that probably doesn't make you feel any better but I guess my opint is there's always something to be grateful for--I'm sure there is in your mom's case too. I'm sure one thing she is grateful for is that she has you to visit and advocate for her!

Thanks Nelie and Marcia-
Nelie-How many chemo treatments did you miss? Did they do the neck resection after the decision to stop the chemo?

I am encouraging my Mom to meet with someone at MD Anderson after she recovers to discuss the benefits of a modified resection as an addittional insurance that she is/stays cancer free. She is just so down right now from being so sick and feeling so defeated. She even said today that she does not want to finish her IMRTs. She has gotten 37 and has only 3 left. But she is saying no. The vomiting started again today and the meds do not seem to help her. She has even vomited bloodish colored stuff- probably from her insides being so raw from the wretching. Any recommendations on good antiemetics? She is currently using 32 mg of Zofran 1x a day & fennergan every 4 hours. It is not helping.

I have one question on the voice of a radiated patient. She really does not have one. I can barely hear her. She has such a hard time talking and the voice is so weak. Has anyone else had this happed and how long does it last for?

Thanks for the supportive words.
Tami

Tami, I lost my voice entirely the last week and 1/2 of radiation and for about a week after rad ended. When it came back, it did so VERY gradually at first.

I also vomited "blood-colored stuff" from about week 4 of radiation on until about two weeks after it ended. I think there was a spot in my throat that was just raw and every time I vomited, the scabs over the raw part sloughed off(that spot in my throat, 3 months later, is still hurting and having a hard time healing-not concidentally). The rad oncologist said not to worry about it--that this often happens when you have severe mucositis. And rememeber that a tiny little bit of blood can look like much more when it mixes with other liquid such as phlegm or whatever else she's vomiting up.

As for how much chemo I missed, it's probably hard to compare since I was not doing the same chemo regimen they have your mother on. I was doing cisplatin every three weeks through 33 days (6 and 1/2 weeks) of rad(or that was ideally what would have happened). So I had my first treatment day one of rad, the second should have been day 22 of rad but in fact it was, I think, Day 26 of rad because I was too neutropenic on Day 22. The third one, if everything was on schedule, should have been the beginning of the 7th week of rad(which was when I had just half a week, or 3 days, left of rad), but because of the prior delay, 3 weeks from that delayed date would have made it the day after rad ended. But by that Monday, I was in the hospital with a high fever from an infection and was on IV antibiotics because I was neutropenic, so that would have had to be delayed until *2 and 1/2 weeks* after rad ended which was not worthwhile since the chemo, in this case, is meant to just act as a radiosensitizer (i.e. the chemo makes any cancer cells you have more suscpetible to death from the radiation.) Since by 2 and 1/2 weeks after rad, the effects of rad are just beginning to wear off, it didn't make sense to anyone to inflict more chemo on me. Including me. :rolleyes:

Tami, I forgot to answer the question about neck resection. I had surgery and a selective neck dissection first--before radiation-- because I was stage II and the results of that were what would determine whether I would need radiation in the first place (unfortunately, although all my nodes were clean, the pathology of my tumor indicated some risks of recurrence so I ended up having the radiation and the chemo after). So again, my case isn't really comparable as far sa that aspect goes.

Thanks Nelie-
Just curious (since your in NY) where did you get your treatment? The reason that I ask is just in case that my Mom comes and lives in NY I was wondering what cancer center options we have. I live in the Rochester area and some other family lives in Albany. Any good cancer centers in these areas?
Tami
PS I love Ithaca & Cayuga Lake!

Hi Tami,

My husband also lost his voice, at least it was down to a whisper, for about 2 weeks. It came back gradually as Nelie described above.

I think it would be a great idea for your mom to get a consultation from Anderson M.D. to see what she should do next. After what she has been through, getting some advice from the #2 CCC in the country should make you all feel better about the next course of action.

Since my husband has been going through hyperbaric oxygen therapy (HBOT) recently, I've been learning quite a bit about the effects of radiation. We were told that radiation reduces vascular flow in the radiated area to about 20% of normal and the tissue may not heal as normal. If this is the case, they may use HBOT before any surgery is performed because it will restore vascular flow to 80% of pre-radiation levels.

Regarding the nausea and depression, you might check out this article on acupuncture from the OCF Oral Cancer News -

http://www.oralcancerfoundation.org/news/story.asp?newsId=783

My husband has used it successfully for a number of cancer treatment related issues including nausea, pain, anxiety/depression. It is supposed to work well for xerostomia too, so I think his acupuncturist is going to focus on that next.

Connie

Tami, I got all my treatment here in Ithaca at Cayuga Medical Center which has just opened up a radiation medicine department that is a branch of Roswell Park in Buffalo (one of the top 10 CCCs in the country according to some lists). There is also a well-trained ENT here who did my surgery and will be my primary follow-up person and an extremely well-trained (and incredibly overloaded) medical oncologist(used to be at Sloan Kettering then moved here because he wanted to raise his kids here). Without radiation oncology here, though, If I'd been diagnosed any earlier I might have ended up at Roswell Park, which would be a long way but is the closest CCC.

I have heard mixed things about the treatment facilites for oral cancer at Upstate Medical in Syracuse and at Strong in Rochester--and they aren't CCCs. Probably of you want your mom to get the best care, Roswell Park is the closest quality choice (at least for you it is within a semi-reasonable dirving distance--for me it is over 3 hours away--which is why they opened a branch for radiaiton medicine here).

I also got a very important second opinion from Dana Farber in Boston about whether I needed rad or not, after I'd had my neck and tongue surgery, and it was there I first learned that concurrent chemo might be a possibility and talked to the med oncologist there enough about it to be convince it would be worthwhile to do the whole 9 yards--surgery, rad. AND chemo.

Thanks for the info. I will remember the HBOT for the near future when we consider the surgery. It was also mentioned to me (from Brian) that rad patients who are at high risk of stroke should get a Ultra sound of their corrated artery after Rad. My Mom started her treatment with high blood pressure and high cholesterol so I am pushing for this exam. Has anyone else had this done?

Moms blood counts went from 1.7 to 5.7 today. I am sooo happy. Now we just need to control the vomiting/naseau. Once she can tolerate nutrition she can go home. Her morale is shot. She has 3 more ImRT's left (done 37) and she told the dr today that she is quitting them too. So now she will have only had 1/2 of her chemo and missed 3 imrts. Hopefully these decisions will provide her with some relief but still have a positive outcome in the long haul.
Tami