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