CancerCompass message board discussion started by amycm on 1/8/2008 http://www.cancercompass.com/message-board/message/all,19508,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am in desparate need of some insight on my father's condition because the doctors seem to be useless. If anybody has time to read this, I would be eternally grateful if you could give me some advice on what I should do.He has had a nephrectomy in 2002 and found out in April 07 that the RCC had spread to his lungs. He has been on Sutent since then where after a few adjustments, settled on a 14 day treatment and 7 day break cycle. He was doing very well with the sutent with side effects of only h&f syndrome and little mouth sores now and then; his swollen feet made walking a bit uncomfortable (especially when there was pain) but he was coping fine with all daily activities and was able to eat fine. In Sept, he started having headaches and we foun mets in the brain. The oncologist said to stop sutent and begin a two week whole brain radiation treatment. He was taking dexamethasone during this time which was said to reduce any swelling of the brain that may occur. The dex made his face all red and puffed up and increased his apetite. We stopped it a few weeks after the radiation treatment and started sutent again. Aside from hair loss and tremors and tolerable hand tremors and cramps, he didn't really have any severe side effects; no blindness, memory loss or fatigue. Overall, my father has experienced minimal side effects from Sutent and recent CT scans show that there is no growth to little growth in his mets which is positive. However, everything took a nasty turn 2 months after the brain radiation...In late Nov, he started to have ongoing fevers. His temp ranged from 99-101 and tylenol suppressed it only for the 4 hours as shown on the bottle. After that, the fever would come back again. Tests were done that ruled out possible pneumonia or infections. I understand that the fever may have been caused by the cancer or Sutent, but it's hard to believe because absolutely nothing like this has ever happened before.  The chemo oncologist could not offer ANY advice besides staying on tylenol. We turned to our family doctor who prescribed antibiotics but they didn't seem to work. It was only until I discussed things with the radiation oncologist that it was brought up that dexamethasone may be option used to cure the fever. We got the approval of the chemo oncologist (who's our main oncologist) and started the dex (4mg/day); and like magic, the fever stopped the morning it had been first taken! It did not come back but because dex cannot be taken long term due to possible damage to stomach and heartburn, we started to cut down on it after a week. They came back a while later and we used the dex again and stopped. Although my dad wasn't very tired and the dex boosted his apetite, we were concerned with the fevers and the oncologist didn't seem to support the use of dex due to its dangers. When we asked for an alternative, he recommended trying INDOMETHACIN (a kind of anti-inflammatory pill, 25mg/3 daily) and this was a MISTAKE. I'm no doctor but looking at the effects that followed after going on this medication for week, I can't help but with great anger blame the oncologist.From the indomethacin, my dad started experiencing severe fatigue, which he has never had problems with. In the past, only once in awhile would he take short naps in the afternoon; but now, he's been sleeping in and after lunch, sleeps all afternoon and doesn't want to wake up. His face has gotten pale, eyes are a bit yellow and watery. But most important of all is that he has completely lost his apetite which has become a shock to him because he never had trouble with it. He just can't eat. We had to stop the indomethacin because of this, and this decision had not been suggested by the oncologist. We tried taking pills that are supposed to help with appetite (also NOT first suggested by the oncologist) but none of them worked. Yes the ongoing fevers have passed and shifted to fevers that would only occur once a day (where one dose of tylenol would do the trick)... But for two weeks now, he has not been able to eat and his fatigue isn't getting any better which has caused a major drop in his spirits which is even more harmful to his condition. All the doctors are no help at all. When I talked with my family doctor, all his could point out were negative things like reminding me that my dad's comdition is "terminal" and we have to accept the inevitable. The oncologist is USELESS because he doesn't seem to have any ideas at all and only does what WE suggest. Like a few days ago I asked if we could try the dex again, at a lower dose to be safe, and he sai something like "sure, you can do that." My dad's hands still shake a bit and I asked if maybe he was a bit low on potassium and if supplementary pills were needed and ONLY when I brought this up did he find out from the blood reports that my dad's potassium levels were a bit low and took my advice with the supplementary pills. Does anybody see a problem here??? I don't know what to do and the doctors don't seem to either. Is this lack of ideas their way of telling us that there's no hope and the end is near? I'm quite apalled by all this because the Sutent just seemed to be okay. The mets to the brain was a scare but there weren't any major side effects that my dad couldn't cope with. What what's hapening right now is quite terrifying and what makes it most terrifying is that the doctors cannot seem to help. I don't want to be cynical but that is the impression that I receive. When I asked about my dad's brain tumors, the doctor simply said that the radiation treatment is only done once and supposedly terminates cancer growth; also, because of this fact, brain scans are usually not made aftewards and so we cannot know the exact details of what's going on in the brain. Is this even true? Or was this said to comfort us? I truly want to find a way to turn things back to the way they were before all of this. My dad's getting pickier with the limited selection of food that's he's willing to swallow. Why won't it go away? We were told in the beginning that our usage of Sutent would be mainly for "buying time." I don't want to but I can't help but wonder nowadays what to expect when time starts to run out. If there's anybody going through a similar situation or just has information to provide, your input would be really appreciated. Any comments either on my dad's condition or what I should do would all be very helpful. Thanks. Amy   amycm Tue, 08 Jan 2008 00:00:00 GMT Hi Amy I am so sorry that you have to go through this . I can Say I know exactly how you feel . My husband  went through all of this . And all I could do is be there for him, it makes you feel so helpless. My husband turned 40 in September and god took him november 17 . Believe me Honey I am very angery and I pray for all of you but that doesnt mean we cant get angry. I know from going through everything that no matter what anyone tells you its not going to make you feel better. The Dr would tell me about my husband being terminal and I never wanted to believe it. And remember one thing god is the true healer not the dr . The doctors do not know enough about thes meds because they are all new some people they work wonders on and others they dont work to well on. I also had this cancer when I was 19 and had my left kidney removed. I am now 42 years old . My husband always worried about me and he was the one who ended up lossing to this awful disease. Please honey take one day at a time new things are coming out all the time. They just came out with treatments for this cancer in the last 2 years so please hang in there and I will pray for your dad to find healing . Take care of yourself also because he is going to need you to be strong for him. You sound like a wonderful daughter and my husband is one of the angels looking down on us so I know he is looking over and pulling for everyone on here because we used to pray for everyone together he always felt bad for everyone else. god bless you Love Johna JohnaPa Tue, 15 Jan 2008 00:00:00 GMT  On 1/15/2008 JohnaPa wrote:Hi Amy I am so sorry that you have to go through this . I can Say I know exactly how you feel . My husband  went through all of this . And all I could do is be there for him, it makes you feel so helpless. My husband turned 40 in September and god took him november 17 . Believe me Honey I am very angery and I pray for all of you but that doesnt mean we cant get angry. I know from going through everything that no matter what anyone tells you its not going to make you feel better. The Dr would tell me about my husband being terminal and I never wanted to believe it. And remember one thing god is the true healer not the dr . The doctors do not know enough about thes meds because they are all new some people they work wonders on and others they dont work to well on. I also had this cancer when I was 19 and had my left kidney removed. I am now 42 years old . My husband always worried about me and he was the one who ended up lossing to this awful disease. Please honey take one day at a time new things are coming out all the time. They just came out with treatments for this cancer in the last 2 years so please hang in there and I will pray for your dad to find healing . Take care of yourself also because he is going to need you to be strong for him. You sound like a wonderful daughter and my husband is one of the angels looking down on us so I know he is looking over and pulling for everyone on here because we used to pray for everyone together he always felt bad for everyone else. god bless you Love JohnaThanks for your kind words. I'll hang in there. It's not really anger that I feel but fear. I mean, if the doctors are not reliable, who am I to go to in order to help treat my dad?  amycm Fri, 18 Jan 2008 00:00:00 GMT Amy, my brother has had similar circumstances with his renal cell carcinoma.  Briefly, he had one kidney removed, had metasteses in brain, lungs, spine, skull, is a type II diabetic and insulin dependent on top of all that.  He is on his 6th round of Sutent and all signs of metastes have disappeared from MRI. He under went a fairly new procedure called cyber knife which took care of the brain and skull tumor.  I am so thankful he has an oncologist who is on top of his case.  I too am fearful of the swelling, loss of appetite and excessive fatigue.  He can no longer get up and walk because his legs are so weak they cannot hold him up and he has a fear of falling, as he has done on two prior occasions.  I have seen my brother bounce back from everything that has come his way since he was diagnosed in April, 2007.  I am like you, I refuse to accept these symptoms as being last days  simply because of the miracles I have witnessed during  his illness.  I would like to share some of the things I do personally to help him have hope and courage and look to the future.  I take hope each time I can encourage him to eat a little something extra.  He certainly does crave anything sweet, which is not doing his sugar levels any good, but how can you refuse them?  I take him sugar free Russell Stover pecan delights.  I talk to him about the coming spring, he loves to fish and I tell him we are going to go fishing soon, going for rides in his red newly restored "66 Chevy Nova, and just sitting on the deck in the warm sun.  I try to give him encouragement and talk about positive things.  I take him little surprises every day when I go to stay with him because his wife has to work in order to maintain their insurance coverage, which is a true blessing.  Each day I take some of the pictures I took of places I had been when I was driving a truck from coast to coast.  He enjoys looking at places he has never seen.  I am always looking for new avenues to keep him from having time to be depressed and will often times talk about things and say I have forgot what so and so did and ask him if he remembers just to keep his mind from going stale.  Amy, you are with your dad every day and the doctor only sees him once a week or once a month.  You know the right questions to ask, write them down and do not settle for anything less than an answer you can understand and one that makes sense.  I understand your frustration but you know the course of treatment he has been on and you know if it works and if not you must suggest to the doctor things which might help, vitamins, shots to improve appetite, marinol, pain meds.  I do hope you get a little encouragement from people on this web site.  If your dad were in his last days, I can assure you hospice would be the word you hear most often, so  until that is mentioned, there is hope for recovery.  God bless you for your devotion to him and make this an opportunity for quality time and it is just that, quality.  God does answer us.  When we take the time to talk, He takes the time to listen. Janice Marie Wed, 23 Jan 2008 00:00:00 GMT I just lost my husband to RCC. Your words are an echo of mine. Your concerns were the same as mine. It seemed like I was making the decisions that I felt the ONC. should have been making. I have to say that I armed myself with as much knowledge as possible, consulted everyone from the Docs at MD Anderson to the Holistic approach folks. The truth is that this disease is an enigma.....there are many good meds that buy time for Stage IV folks but with them come so very many hideous side effects. I hate to say it, but it is a huge guessing game..trial and error treatment is not comforting when watching someone you love go thru this. We were told "his fever was tumor related". One of the suggestions that was the biggest help for my hubby  (helped with apatite, nausea, and pain) was marajuana brownies......he actually got a perscirption. These seemed to be our miracle drug....at least to give him periods of comfort.. People are having good results with temsirolimus (Torisel). My husband was on that for 4 weeks right before he went into hospice house but his body was too weak to tolerate the treatments.I  wish I had the wisdom to ease your concerns. Just take one minute at a time. Tell him you love him and light up your Oncologists phones. A good ONC should be available to you 24/7 to answer  questions and help you thru this. Our ONC gave us cell# and home phone too. Expect nothing less.Good luck and God Bless!  Ambush Sat, 02 Feb 2008 00:00:00 GMT