Hi,

Has anybody had any experience with the Cancer Treatment Centers of America? Heather is starting to swell again and she has a lot of trouble with nausea. The zofran helps some, but not always. And she is having more trouble with drainage again. Although she still is much better than before, I am getting worried because it seems like she is being treated piecemeal. One doctor treats the nausea, another does the drainage, another the chemo, etc. It seems like no one is looking at the whole picture and I am getting worried that she will start going downhill again.

The chemo does seem to be working, but I don't think the docs are concerned enough about some of the other issues. The nausea is controlled somewhat with the zofran, but not totally. She still is not using the PEG tube for nourishment. For nutrition, she relies totally on the TPN & lipids that she receives intravenously. The open areas in her neck are draining a lot again and are probably infected. Her Hickman (mediport) started leaking and had to be removed, so she just has a PICC line in her arm to receive meds. If she goes back on antibiotics, she will need to have an IV line in her other arm, because sometimes she has 4 or 5 things running at one time. Etc., etc., etc.......

She has improved so much and I just hate to think it is only temporary. But I can't imagine her continuing to improve if they don't get these other issues resolved. I think it is time to take her somewhere where they treat the entire person. Somewhere where they will maybe try natural remedies to help control the nausea, instead of just pushing more zofran. Somewhere where they will work harder to get her back to taking food through the PEG tube and get her off the TPN. Where they might actually try to get her to take food orally again. Since her mouth is opening up, it should be possible, but when I asked about it, I was told it was too soon, that I shouldn't try to rush things.

Maybe I am trying to rush things, but I think they are too content to just sit back and see what happens. I want someone who will take the bull by the horns and get action. I don't want to just sit back and watch while Heather gets worse again. I know she needs to receive the chemo, but I think it is reasonable to add some homeopathic or other remedies to the mix. I just don't know the best place to go to do that. Any and all suggestions welcome. Thanks!

Rainbows & hugs,
Rosie

Hi guys,

Thanks for the personal replies. I appreciate the help. I re-read my post and I think I need to clarify a few things.

First of all, Heather will be continuing the chemo. That was never in question. In fact, she has another round scheduled for tomorrow. It was all the peripheral problems I was concerned with. It now looks like some of the things will be addressed sooner rather than later. I was told today to expect a call from the insurance company. I guess they want Heather out of the hospital soon, so the docs are willing to try to speed things up a little. They will start using the PEG for feeding again, instead of for draining the stomach. And she will be seeing a swallowing therapist to determine if it is feasible for her to start taking some liquids or soft foods by mouth soon. We are in agreement that all this has to be done very gradually. It is totally unreasonable to think she can just start eating normally again, but there is no reason why her swallowing ability can't at least be evaluated. And we have been told for weeks now that it is much better to be fed through the stomach rather than intravenously. So it is worth a try. If her stomach isn't ready, that's fine. At least we will know where we stand.

Anyway, we do seem to be moving ahead, albeit slowly. It appears that perhaps Heather is better off where she is, at least for the time being. I will continue to explore other options, but as long as she is improving, I won't rock the boat. The chemo is obviously working, so I will try to not get bent out of shape over the other issues. I will definitely keep a close eye on everything, though.

I still don't know a lot about the Cancer Treatment Ctrs. of Amer., but it appears they might not be as good as they sound. I was a little skeptical, which was why I asked if anyone had first hand knowledge of them. I'm sure they do a good job. I just don't know if they do a great job. It was the fact that they seem to treat the whole person that was appealing, but that doesn't mean Heather would have a better end result there. Anyway, they are several states away and the insurance company probably wouldn't pay for it anyway. Although we are willing to pay out-of-pocket to help Heather if necessary, we are not independently wealthy and it would quickly become a burden. So we would have to be very sure that it would be worth it first. And I don't think that is the case with the Cancer Tr. Ctr.

Geez, I am so windy. I really have to start cleaning my house when I'm home instead of posting on this forum! I'm sure my husband would appreciate it.

BTW, before I get replies telling me not to let the insurance co. push Heather out of the hospital too early.......I don't intend to let that happen. I am anxious to get her home, but only when she is ready. She is still on morphine, TPN, lipids, antibiotics (yes, she had another infection), steroids (for the swelling), nupogen (sp?), procrit and something to prevent blood clots (I forget the name). Not everything is given 24/7, but it still is a lot of meds and most are IV. Her blood levels held pretty steady after this last round of chemo probably mainly because they gave her the nupogen before the levels dropped instead of waiting until after. But I would feel better if they still held steady after one more round before bringing her home.

Gosh, I have to shut up! Thanks for listening.

Rainbows & hugs,
Rosie

P.S. Brian, please feel free to close this post. I think everything has been said that needs to be said and I don't want to cause any controversy over the CTCA or similar organizations.

Rosie... Heather is the most followed patient on these boards, we are all concerned and interested in not only what is transpiring, but your questions about things that many here have been trying to help you with. As far as I am concerned any posting that contains current information about Heather, or may still prompt questions that could help her, needs to remain open. You never know who is going to read it (3 million hits on the OCF site this month alone) and respond out of the blue with something really profound and perhaps helpful. And as far as controversy.... at this stage, given the waves that have recently been made on this board, what's a little more controversy going to hurt?