rlrose Posted July 16, 2004 Share Posted July 16, 2004 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 Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 16, 2004 Share Posted July 16, 2004 I can't answer most of your questions but I know that radiation works for a while after treatment stops. For us, the onc said results would still accumulate for 3-4 wks after the treatments stopped on Jim's lung tumor. Hope others can tell you more. Margaret Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 16, 2004 Share Posted July 16, 2004 Roanna, the fact that he has pain in areas where there are bone spots indicates cancer. I am surprised the rad. onc. doesn't irradiate those spots to lessen the pain. Zometa or Aredia is good for bone mets. Don Quote Link to comment Share on other sites More sharing options...
john Posted July 16, 2004 Share Posted July 16, 2004 Temodar has been used for brain mets and I have read it works pretty well. http://bca.ns.ca/indice/2002/42index.cg ... ead/171601 Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 17, 2004 Share Posted July 17, 2004 I cannot speak about the bone mets but I have been treated with the Gamma Knife for brain mets. I was scan six weeks after the treatment and scanned every two months for the first year. After the first year, we move the scans out to 3 months. Unfortunately, two were found and were treated at the end of May. On Monday, I go for my six week visit and then back to the every two month schedule. I know all the technicians and office personnel at the imaging center. Any issues that I might have had with a closed MRI machine have been long gone. I have seen from other posts that people have been scanned six weeks after WBR. If more mets are detected, depending on their size and location, it is my understanding that they could be treated with stereotactic radio-surgery. Wishing your husband good results with his treatments! Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 17, 2004 Share Posted July 17, 2004 Dear Rosanna, When did your husband last have a chest x-ray or CT scan done? It would be normal for them to wait and do them three months apart. Radiation can work for up to a year but for sure continues to work for 6 months after completing treatments. Do you take a tape recorder to the doctor's visits when you go? I really want to suggest doing this. Just so you can play back what is being said in the office at the time of your husbands appointments. It's really a GOOD IDEA and Doctor's really don't mind. Good luck and keep us posted. Hugs, Connie B Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 17, 2004 Share Posted July 17, 2004 Roanna, I'm just a little confused (but that's not unusual). First of all, what kind of full body scan did he get? Was it a bone scan? If the onc now says the scan doesn't tell if it's cancer, then why did they do the scan? Also, you don't mention any chemo in your post or in your profile. Has your husband also received chemo? I was just curious about that. You may have said in previous posts and I just missed it. My husband's radiation onc says the radiation continues to work for at least 6 weeks, but you can see changes in the lung as more time passes. In my husband's case, he has continued to show small degrees of lung collapse with each scan which they explain is frequently caused by the radiation, scar tissue, etc. As they radiated area gets age to it, it just kind of gets leathery-like and continues to shrivel some and you get a reduction (or collapse) in the total volume size of the lung. A 6-week scan is frequently done after lung radiation, but we were told ahead of time to not expect to see great results because it takes time for all the radiation "fuzz", irritation, etc. to calm down so they can actually see what success was obtained. Now, as far as them NOT treating the painful areas with radiation, I would thoroughly question their logic in that. If they did the scan looking for cancer, and there are two spots that show up, and your husband has pain in those areas, I absolutely DO NOT understand why they have not recommended radiation to those areas. I think if you would read many, many posts on here you would see that radiation for bone mets causing pain is the common procedure to kill that pain. Just my two cents, Roanne, but I would be calling them Monday morning and looking into this, and if I were you, I would also seek a second opinion. Best of luck to you, and God bless, Peggy Quote Link to comment Share on other sites More sharing options...
SJAS Posted July 17, 2004 Share Posted July 17, 2004 Roanna, My husband had WBR in Feb. and had a follow-up MRI I believe in May. Also, I have read some studies where Gamma Knife was used to remove subsequent lesions after WBR. Steve also has bone pain for which he is using morphine, but his onc. said that if it gets severe, they will radiate it which tends to be very effective for bone pain. Hope you can get some other opinions soon. Quote Link to comment Share on other sites More sharing options...
rlrose Posted July 17, 2004 Author Share Posted July 17, 2004 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 Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 17, 2004 Share Posted July 17, 2004 Hi Sorry to hear of the new problems. I hate to disagree (LOL) with your Doctor, but several people on the board HAVE done other treatments for brain mets AFTER WBR. David C has had WBR and just yesterday, he found out he has brain mets and his Doctors are going to do other treatments. I was raised 12 miles north of Kansas City, so I am just wondering where in Missourit you are. My best to you both. Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted July 18, 2004 Share Posted July 18, 2004 A friend of mine had radiation on a huge chest tumor from lung cancer. He went everyday for six or eight weeks and it was awhile after he stopped that the tumor finally shrunk. It did finally shrink though and he lived almost three years after diagnosis. Sharon Quote Link to comment Share on other sites More sharing options...
jamie Posted July 18, 2004 Share Posted July 18, 2004 HI! Has your husband ever had a PET scan??? This would definitly be helpful in figuring out what is going on. Hope this helps... Jamie Quote Link to comment Share on other sites More sharing options...
rlrose Posted July 19, 2004 Author Share Posted July 19, 2004 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 Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 19, 2004 Share Posted July 19, 2004 Roanna, I don't know anything about Quadramet. My husband had radiation to his shoulder for severe pain. The rad. onc. explained that bones are constantly trying to heal themselves, but the cancer is too aggressive and won't let them heal. Radiation destroys the cancer in the area radiated, and the bone is then able to heal, and then the pain goes away. Hope that helps about the radiation and pain. God bless you, Roanna, Peggy Quote Link to comment Share on other sites More sharing options...
rlrose Posted July 19, 2004 Author Share Posted July 19, 2004 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 Quote Link to comment Share on other sites More sharing options...
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