rlrose

I hate to hear about those horrible side effects from Tarceva. Wayne started on Tarceva 3 weeks ago and only a little rash on his face which is clearing up. However, he is still has extreme fatigue and is in bed much of the day. His last chemo and radiation treatments were about 4 weeks ago and I was hoping he would get some strength back. I see that Tarceva also causes fatigue. He's taking 150mg. I just read some info on Tarceva and see that it should be taken on an empty stomach which is something we have not been doing. Wayne is on a feeding tube almost continuously so it's difficult to have his stomach totally emply. Roanna

Hydrazine sulfate is said to be safe and can be taken by anyone with any kind of cancer. It helps cancer patients to increase their appetite, energy levels, weight gain and may help shrink tumors. http://life.uniserve.com/expl/hyinfo/hgliobla.htm http://www.alternative-doctor.com/cance ... nesulp.htm http://www.mnwelldir.org/docs/cancer1/altthrpy2.htm http://www.cancertutor.com/Cancer/Hydrazine.html http://scri.ngen.com http://www.heall.com/medicalfreedom/hyd ... hate2.html http://www.alkalizeforhealth.net/cancerpain.htm http://www.hydrazinesulfate.org/ to order: (60mg) http://tools.addme.com/servlet/iStore?id=111511S Here's some info on the flaxseed oil-cottage cheese that apparently cures lots of people of cancer. http://www.beckwithfamily.com/Flax1.html

Does anyone have any experience with either of these? We are trying both of them, desperately trying anything to get Wayne's cancer under control. Roanna

Wayne was just given the good news on Wednesday at the Cancer Treatment Center of America in Tulsa that his lung tumor has shrunk some from 3 treatments of Gemzar. He will continue with this treatment as long as it's working. I'm hearing lots of good things about Alimta-the new chemo drug just approved by the FDA. Some patients are experiencing 30-50% reduction in their tumors. It sounds wonderful and will give Wayne something else to try if the Gemzar doesn't keep working. Roanna

Wayne wasn't able to get a chemo treatment yesterday. His white cell count was only 1.7. The onc. is going to order 2 injections (don't remember the name) to raise the count and start by giving him only 1/2 dose of Gemzar next week. The cancer has spread like crazy and the onc. said that if about 70% of his bone marrow is tumor cells, the chemo might bring it down so low that here will be a risk that he won't survive. We will be staying at the Cancer Treatment Centers of America in Tulsa for at least two weeks so the onc. can keep a close watch on him. We're still working on his pain. So far, nothing has worked that great. Started taking Oxycontin today but were told it could take several days to take effect. Roanna

I took Wayne to the Tulsa center on Thursday. This is the BEST decision we have made since he was dx. He saw a lung specialist, rad. onc, oncologist, patient education nurse, pain management doctor, psychologist, nutrition nurse. They took x-rays, CT scans, full body scan to see exactly what's going on. Tuesday we're going back to find out the results and to see the naturopathic doctor. All the doctors and specialists work together on your treatment. They all know what's going on at all times since they all use the same computer system. Everyone there is happy to help you and answer your questions or will call someone immediately to find out. One night, a nurse even called the oncologist at home at 10pm to ask what kind of an injection to give Wayne for his pain so he could sleep. Everyone at the Center is offering us hope and that's the first time we've heard that from medical doctors (Wayne's local onc told us last appt. that Wayne should already be dead!). The oncologist listened to our concerns about Wayne taking chemo and says that the chemo along with complimentary supplements should be well tolerated. Another thing is that patients can stay in guest rooms at the Center for $30/night (much like a modest hotel room with a recliner in every room) with everything you need for a comfortable stay. There are computer rooms, game rooms, laundry and kitchen access. There is a cafeteria where breakfast is $1.50, lunch and dinner $3. The much of the food is organic, with lots of choices of entrees, salads, fruits, juices, teas and lots more. The great thing is that you can rest in your room betweens appts. and treatments. We are lucky because we live only about 100 miles from Tulsa and can drive down for treatments. But, there were people there from all over the country. Sorry if I sound like a commerical but I really do wish we had gone to the CTCA first. I do have a question for the people on this list: The onc. is recommending Gemzar for Wayne. I would like to know the possible side effects and if anyone has seen good results with this type of chemo. Roanna

Wayne's hair fell out after 7-8 WBR treatments. He finished June 17th and his hair still has not grown back. I've heard that some people never get their hair back. It wouldn't be so bad since he's a man except for the large scar he has from his brain surgery. (I don't think it's that bad) He feels like he would offend people if he didn't wear a cap in public. As a result, he doesn't go anyplace that he can't wear a cap, such as church, fancy restaurants, etc. He was very tired during his treatments and the last 2 weeks of WBR he was also having lung radiation. He was never in bed and was always able to drive himself to his treatments. The main complaint he has now is that he thinks his taste buds were damaged with the radiation and now most everything he eats has no taste or a bad taste. As a result, even though he was able to gain about 4-6 lbs. during raditation, since he's finished the treatments, he has lost about 15 lbs. Roanna

Wayne is getting a tiny bit of pain relief from the patches but is still taking Percocet and Advil. He's using 2 of the 25mg. The problem is that now he is nauseated and has vomited a couple of times. Does this side effect go away over time or should he just forget the patches and use the Percocet? He can't afford to lose more weight, especially when nothing tastes good to him anyway. Roanna

I want to thank everyone for all your advice. Wayne's dr. said to put on two of the 25 mg patches so we did that this afternoon. She also said it was okay to take percocet in addition for the pain. Has anyone had side effects from the patch? Will the patch eventually work (without lots of side effects) if you have the right dosage? I'm really worried about all his pain because I have to leave Wednesday on a 6 day business trip. He's up and about most of the time with only occasional naps. He does have relatives to help him as needed. I was hoping the patch would help him get through the night without needing to get up and take more pills. And maybe it will work for him with the higher dosage. Roanna

Wayne put his first patch on last night and still no pain relief. We'll call the doctor tomorrow if it's still not working but is it okay to take Advil with the patch? Just for tonight or in the morning? Roanna

I guess Wayne is fortunate in that he only has one tumor in his right lung and he has no shortness of breath, weezing, etc. The bone mets are bothering him, not the actual tumor. We will ask the onc about Ebitux. She also wants Wayne to start on Zometa once a month. I've heard good things about Zometa but does it help the bone pain at all? Has anyone been treated at Cancer Treatment Centers of America? We are only 90 miles from the Tulsa center and I've heard good reports about their treatment. Maybe with the nutritional help they give, Wayne could torerate the chemo. Roanna

The onc said he can take Iressa but as a first line of defense, his insurance won't pay for it (and it's been appealed twice). The price here is $1860.00/mo. and it semms to work in only a small percentage of patients. Wayne took Iressa for about 2 weeks when first dx and hated the way it make him feel but now that he's used to all the side effects from treatment, it probably wouldn't bother him as much. If he could just get the insurance to pay for it, he might try it again. He also has severe sensitivity to prescription drugs which have sent him to the hospital several times in the last few months. He's reluctant to put those chemicals in his body when most of his life he didn't even have to take an aspirin. The onc said she couldn't give him the strong chemo to break the brain blood barrier but since mets are not showing in the brain CT, maybe the chemo wouldn't have to be that strong. Wayne has an appt with her next week. But right now, he's in extreme pain from the bone mets and has side effects from the percocet. Does anyone know of an effective pain killer that has few side effects? Roanna

Wayne's CT of his head showed no brain mets, which is some good news. But the CT of his chest shows that lung tumor has grown and now there are liver and adrenal mets, too. He already has quite a few bone mets in his joints causing him lots of pain. We are so discouraged since he had 6 weeks of lung radiation and the cancer was progressing during that time. He has lost more weight in the last few weeks and says nothing tastes good anymore. Probably a result from the WBR. The onc. agrees that he is not a candidate for chemo. He has an appointment with a naturopathic doctor next week to see if there is something else we might try. He has been taking supplements, eating no sugar, no processed foods, very little meat. Nothing seems to be slowing the cancer.... Roanna

Tess, So very sorry about your husband. Sending prayers your way. Roanna

Wayne's bone scan on July 14th showed increased bone mets to his hips, shoulders, spine and ribs. He was given a treatment of Quadramet on July 22. It's a "liquid radiation" and it goes directly to the bone mets and from what I understand, helps to get rid of cancerous tissue in the bones so that the bones can heal. The rad. onc. said that this treatment can cause lots of pain in the few first days -and it has- but that just means it's working. Quadramet is long lasting and can be taken 3-4 times/year. The pain is supposed to improve within a week, so we'll see. You might want to talk to your dr. about this treatment. I haven't found much information about it but it's been available for several years. I'll let you know if it works for Wayne. Roanna

Peggy, Thanks SO much! That's what we needed to know... That the radiation helps get rid of the cancer. Since Wayne is not doing chemo, that is what he needs to do next. Roanna

Wayne is going to have a treatment of Quadramet next week. We both thought that the onc and rad. onc said that it would help destroy the cancer and the pain but everything I find on the internet says it's only for the bone pain. Does anyone had experience with Quadramet? any side effects? does it work? From what I've read, you can't have the Quadramet at the same time as radiation. Does radiation to the bone met only help the pain also, or does it help get rid of the cancer? How long after radiation is over does your taste of food return? And how long before the fatigue goes away? Roanna

The whole cancer thing is confusing and I don't know what I would do without the internet and people like you helping you through this. Wayne just isn't up to doing all the research I've done.. The onc told us Tuesday that there was NOTHING else they could do from the neck up after WBR. Then she walked out of the room and the nurse walked back in with an order to do a brain MRI today. If there's nothing to be done about any lesions left in his brain, then why do an MRI? So, Wayne cancelled it until he's able to talk to her more about it. The rad. onc agreed with us the next day that he wouldn't have ordered the MRI, but then he didn't order any scans (except the x-rays) The onc ordered the full body bone scan, which we wanted, but the rad onc says it doesn't really tell us much and couldn't give a very good reason for even having it done. The rad onc plans on radiating the spots but probably after he has the Quadramet next week. In the meantime, he's having to deal with the pain. He hasn't had any chemo yet. He's had severe reactions to several brain seizure meds--Dilantin put him in ICU overnight. Right now he's on a low dose of Depakote that seems to agree with him. He only had one seizure and that was before his brain surgery. In fact, he's back in bed right now shivering and I'm thinking he's having a reaction to 2 percocet he took last night. We may end up in the ER today. His onc says that chemo would probably not be good for him--especially in the doses they have to give for brain mets. She said the other day that he may want to consider it later, though. I personally believe that it would kill him because he can barely take Advil. He's hardly ever been sick and taken medication before this. We're watching his diet--no sugar, no white flour, no processed foods, no red meat. And he's taking of vitamins, supplements and anti-oxidants. I think this has helped him gain weight during radiation and kept him healthy in general. All the other doctors locally are not in his insurance network so changing would mean everything paid out of pocket... we've already asked. Thanks again for all your help. Roanna

Wayne has hip and shoulder pain. Got a full body scan ordered by onc. on Tuesday. Spots showed up in hip and shoulder. We were told by Rad. Onc. that this scan doesn't show what is cancer. He ordered x-rays which show nothing. But, he is assuming the pain is from cancer and recommended Quadramet. Also, Zometa. They want to put in a port soon. Wayne just finished lung radiation Monday and WBR a few weeks ago. The Radiaiton onc says no reason to take any scans of these areas. We've been told there's nothing more to be done for the brain so that's okay not to have a scan of the brain. But, it seems like most everyone on this board has regular scans to see what the cancer is doing. Are the doctors just giving up? or are they afraid for you to find out their treatment didn't work? Do you have to wait awhile after radiation finishes to see any changes to the lung tumor? Actually except for the hip pain, Wayne is doing very well for as serious as his condition is. (he was out in the yard using his weed-eater last night) So there's no reason to give up right now. Thanks for any help you can give me. Roanna

Wayne is having lots of hip pain and we are thinking it is a bone met but don't see the oncologist until Tuesday. His chiropractor mentioned that there is a treatment for bone mets which is given by IV. Has anyone heard of this? Also, he is taking Depakote. Does anyone have any experience, side effects, etc. with this brain seizure medication? Wayne has shown to be very sensitive to prescription drugs so we are worried about anything he has to take. We are going to mention Celebrex at his appointment. Does this drug help at all with hip pain? or with the cancer itself? what about side effects. Sorry about so many questions but everyone here seems so helpful. Roanna

Since April 2, I have taken Wayne to the ER 3-4 times for side effects of the brain seizure meds he supposedly HAS to take--just in case he might have a seizure (he has not) following his brain surgery to remove a tumor. He is very sensitive to drugs having never taken much of anything. His oncologist decided he would not be taking chemo. I agree with that and personally think it would kill him anyway. He really didn't want to take WBR radiation but the doctors scared him into it and I'm hoping he doesn't have too much damage from it. He'll be finished next week and I'm hoping that's the end of any treatment from the doctors so we can start getting him well. We have him on a very good diet, lots of vitamins and supplements and several alternative cancer treatments which I believe have helped him get through the medical treatments he has received so far. I'm very down on the medical profession lately when I hear about the horrible treatments people have to go through when they have cancer which doesn't cure them anyway. It's so sad that anyone living in a country as great as ours has only a few medical options that are so destructive to human life. Roanna

Wayne has 12 more lung radiation treatments remaining and seems to be doing very well in general. But, he has been having lots of hip and shoulder pain lately. We got out his copies of his scans taken the end of March '04 and saw that there are spots on his left hip and right shoulder marked on the full body scan. Neither the oncologist or radiation oncologist have mentioned these areas and have concentrated the radiation on his brain and lung. His neurosurgeon mentioned right after his brain surgery that these spots could be arthitis so we really didn't worry about them. His chiroprator fould that his hip was out of the socket and put it back in but is now thinking there might be more than that problem. Wayne will talk to his radiation oncologist on Tuesday and have him look at the scans and maybe have him take new ones but in the meantime, has anyone here experienced joint pain with radiation? As you all know, it's difficult with so many doctors involved to get to the bottom of a problem and try to figure out which doctor to believe. Thanks for your help, Roanna