Once again , Liz...awesome insight and words.....

Thank you for your message. I am the mother of a 26 year old, and I thought I was doing okay. The fact of the matter is I am not. So I am going to talk to more people and find support groups. There are not a lot in my area, but I will not give up!

Awesome insight, Liz - from the caregiver perspective as well as being such a compassionate understanding of the cancer person's experience. With your medical background and your many great posts while being Robin's carer and advocate, you should really write a book or at the very least, a "how-to" manual for caregivers. It would be invaluable to so many.

Did not know where to post this. Still a newbie when it comes to navigating the site.

But my daughter will finish up her 4wks of chemo and they did a scraping of the tumor and found no change of the cells. Now on one hand that is somewhat good news that it hasn't multiplied, but on the other should we not have seen some shrinking (for lack of a better word)

Thanks for any input

I am answering this here, but it would be a good idea to keep posting in the original thread where all the information about what has happened to date is. That way people that have not been following you can read through everything before they say something that isn't appropriate to the situation, or has already been said by someone else. So I think I have read most of the other posts, but I may say something inappropriate, since I am not sure I got them all.

This post leaves me wondering about a couple of things. I don't think I saw anything in your other thread about other treatments, except the comment about not doing surgery. That comment makes me think (since this is only a stage one at this point, which most of the time can be resolved with a surgical intervention) that it is in some very touchy anatomical site... (base of tongue -full of nerve bundles etc. or like that). I say that because we know that chemo by itself is not curative for oral cancer. Surgery or radiation is, but not chemo. So that begs the question- where is she being treated at? This would not be the customary treatment protocol at a major cancer center. Chemo by itself can be used as a prelude to radiation (why nothing else has been done yet) sometimes, or in conjunction with radiation. I would make the guess that she is not being seen by an ENT since they are surgically trained and do not do chemo. I would just like to establish that she is in competent hands, in a quality hospitals protocols. Stage one is a good thing, but dealys in doing the appropriate things are not good. Please do not think the worst about your doctors or institution, I may just be working from a lack of information here.

Would you mind posting answers to these observations/questions so that I might better help you?

Thanks, Brian. I will starting posting from my first post from now on.

Yes, you are right. They do not want to do surgery as the tumor is laying on a bed of nerves underneath her tongue, and will only do this as a last resort. They say it would effect her eating, swallowing and speech. They were going to due Radiation too, but recently decided against that since the sores in her mouth are extensive and they said that radiation would make it worse. She is being seen at the Markey Cancer Center in Lexington, Kentucky. Her medicaid made be revoked due to an oversight on her part. And so getting a second opinion at this stage is somewhat sketchy. She has started the paperwork to get a second opinion but her caseworker has said it is a long process. I have heard of laser surgery for some types of tumors and we found out that the soonest she could get in to do this is March 21. It is something that would cost $700, which I am trying to scrape money up to do. Now she raised a question about that. Will being in treatment with chemo effect a second opinion for any reason? I think I need to call and ask them this. I don't see why not, but I'm not a professional. She is also quite anemic, and will have to have feeding tube if she loses another 5 pounds. She has also lost most of her teeth due to an infection or maybe the tumor/cancer itself. These are just some of the other things she is facing to give you more info.

Letitia -

Thank you for adding to the information. Your answers generated more question in me, and I would like you to give me a call at the OCF offices. I still am concerned that a doctor chose a non curative treatment for someone that had an early cancer as the first go to thing. That just defies logic. Those sores that they are concerned about aggravating wouldn't be there, if they had picked radiation first, which is curative. Something isn't right about this and rather than type for great lengths here, if you wish please give me a call. I am in the office most of the next week, and in the Pacific time zone. The numbers are on the contact us link of the man web site.

I do not wish to do anything but make sure you are asking the right questions of the right people, and that her treatment is being managed by some kind of standards like those from the NCCN which are very specific, and drawn up by the top cancer centers in the US.

I will call you on Monday and I will ask my daughter to also be on the call. Since she will probably be better to answer some of the other questions you might have.

Thanks, again.

Dr Brook, I cried whilst reading your post, but won't carry on, because if you read WendyG's post on page 1, I am in the same shoes as her. Without this site, my OCF FB friends and my folks, I wouldn't be sitting here writing this.

Thanks for your understanding.