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