janetg Posted December 1, 2005 Share Posted December 1, 2005 I'm looking for some thoughts and help following our latest onc. visit. Prior to the visit on Monday Ron had 8000ccs of fluid removed from his abdomen. He's not been eating well, feels weak and is complaining of an intermittent pain in his right hip. From Ron's description of his symptoms the onc. says that he believes that all of his difficulties are resulting from cancer. He stated that chemo is no longer an option and that he would just try to keep Ron comfortable. He prescribed decadron to help with energy and appetite. Bloodwork and an xray of the right hip was completed on Tuesday. We are seeing the doc tomorrow to get the results. We've been broadsided with the that trying another chemo is not being offered. We always had that to hold on to. I have a problem with the fact that he was giving Ron such a poor prognosis before having the testing done. Ron is definitely too weak to start another regime of chemo right now but isn't there something we can look at later? This onc. is not Ron's original onc. so I just have question after question. I think that we'll have a little more control over ourselves tomorrow to try to ask the questions but it appears that this abdominal fluid condition has changed everything. Ron did have abdominal fluid 20 months ago too when he had the pleural effusion. It went during chemotherapy treatments. He did have a pleural effusion of the right lung again one month ago. My thoughts are disjointed and disorganzied but maybe some of you can shed some light on this. I see over and over again that many of you on this site have oncologists who keep pushing to try new treatments, etc. Your advice and thoughts will help us to ask the pertinent questions. Thank you. Janet Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 1, 2005 Share Posted December 1, 2005 no experience to share, Janet.. but offering prayers for wisdom, strength, and perseverence. Cindi o'h Quote Link to comment Share on other sites More sharing options...
MilliBr1 Posted December 1, 2005 Share Posted December 1, 2005 Your both in my prayers. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 1, 2005 Share Posted December 1, 2005 Janet, My prayers to both you and Ron. I have no great words of wisdom, but it sounds like maybe more answers will come your way at your next appointment. please keep us updated on how you and Ron are doing. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 1, 2005 Share Posted December 1, 2005 Janet, I wish I had some magic words for you. This is gut wrenching news. Make sure you take a list of questions to the next appt. Is Tarceva an option? Why is he saying no more chemo? Is that just for now or could he have more when he recovers from this last round? I will keep you in my thoughts. Quote Link to comment Share on other sites More sharing options...
Ry Posted December 1, 2005 Share Posted December 1, 2005 I don't see Tarceva on your profile. Ask about it. There are options still available--maybe its time for a more positive doctor? Navelbine is a chemo that some seem to tolerate also--I don't get it. Quote Link to comment Share on other sites More sharing options...
sophiesdaughter Posted December 1, 2005 Share Posted December 1, 2005 Janet, Why is Ron seeing another oncologist and not the original one? did you like the original one? It seems that there are more options: tarceva and alimta, both more tolerable than other treatments. Does the oncologist just want to wait until Ron is stronger? remember you always have the option to get a second opinion if you feel that this oncologist is too negative. Good luck tomorrow, please keep us posted.. Rana Quote Link to comment Share on other sites More sharing options...
janetg Posted December 1, 2005 Author Share Posted December 1, 2005 To answer some of the questions posed - Ron's original oncologist is on sabbatical for a year - he doesn't return to the cancer clinic until September. He is fabulous. I'm assuming that the doctor is saying no to chemo because of the "abdominal fluid" - that that is a sign of a too advanced condition. That in addition to Ron's present "quality of life" issues - we're not making you feel better - even after 2 months of no chemo - he's still hasn't regained a lot of strength. Based on the answers we get tomorrow, I'll ask about Tarceva and Navelbine. When Ron had a reoccurance of first pleural effusion in August (while on Taxotere) the onc. gave Ron the option of going to Navelbine or staying with Taxotere. The onc.'s feeling was that he should continue with the taxotere and if pleural effusion happened again that he would switch to Navelbine. There was another occurance 3 months later. However, this new oncologist gave month 4 weeks off to see if he'd build up some strength, then reassess. Within that 4 week time frame the abdominal fluid became the problem. That's when everything changed. Ron is a little stronger this afternoon - appears to have been able to eat without having to force the food in and actually feels like he has an appetite. It may be the decadron though that's giving him the boost - He's on 2 mg three times a day - the dosage in small because Ron's diabetic so the onc. doesn't want to send his sugar counts through the roof. Thanks for the input. Thanks for the prayers. We appreciate it. Janet Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 1, 2005 Share Posted December 1, 2005 If this onc is not willing to explore other chemos (there are several available that are not on your list), I would get a second opinion. As Ry said, there is Navelbine and Tarceva, and also Avastin and Alimta. Hope the visit brings some good light to all this. Don Quote Link to comment Share on other sites More sharing options...
TAnn Posted December 1, 2005 Share Posted December 1, 2005 Janet, I have a couple of questions for you. First, there are procedures that can be done for the pleural effusion. One being the talc procedure and in my case I had a Denver Catheter to drain my fluid, which has not come back after a year and a half. Second, does the fluid in his abdomen contain cancer cells? Where is the fluid coming from? There are many options for Ron. I was diagnosed at stage IIIB/IV two and a half years ago and have been on many treatments that have held me stable. Currently, I just had my 7th Alimta treatment yesterday. The good news is that after the 6th treatment, I'm still stable. Don't let the doctor call all the shots. Talk to Ron and see if he even wants more chemo and then ask your doctor about the many options still available. Good luck and keep us posted. TAnn Quote Link to comment Share on other sites More sharing options...
annjael Posted December 1, 2005 Share Posted December 1, 2005 Please look into a second opinion! We didnt 4 yrs ago, and I wish we had. Please don't let any one doctor give up on your husband, and say "thats it" Ask questions,questions,and more questions, be proactive and insistant. It all matters, alot. Also remember we are all here for you, whenever you need us. Peace, Annjael Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 2, 2005 Share Posted December 2, 2005 Praying and you might want to ask about Etoposide (VI=16) It helped my wife real good for a while. Quote Link to comment Share on other sites More sharing options...
Patkid Posted December 2, 2005 Share Posted December 2, 2005 lots of prayers being offered. Love Pat and Brian Quote Link to comment Share on other sites More sharing options...
ma's kid Posted December 2, 2005 Share Posted December 2, 2005 No answers but want you to know you both are in my prayers. Libby Quote Link to comment Share on other sites More sharing options...
kamataca Posted December 2, 2005 Share Posted December 2, 2005 That must have been a jolt to hear. All the good advice has already been given, but I can still add my prayers. Take care, and keep us posted. Kelly Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 2, 2005 Share Posted December 2, 2005 Just want you to know I'm praying for you both. Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 2, 2005 Share Posted December 2, 2005 Prayers for hope, strength and success. Quote Link to comment Share on other sites More sharing options...
Don M Posted December 2, 2005 Share Posted December 2, 2005 Janet: you and Ron have my prayers. I would ask about tarceva, or alimta or avastin also. Don M Quote Link to comment Share on other sites More sharing options...
Stephi Posted December 2, 2005 Share Posted December 2, 2005 Janet, Please talk to him about getting a second opinion. MD Anderson and other cancer centers will even do this via faxing his latest test results, etc. to the Dr. I wouldn't take just one Dr. , who you don't seem to have alot of faith in, word as gospel. As others have suggested..you need to take ahold of his treatment..don't ever accept defeat without all the questions being answered and then only if it is the decision of you both... many prayer of healing and strength coming to you Stephi Quote Link to comment Share on other sites More sharing options...
Nushka Posted December 2, 2005 Share Posted December 2, 2005 Of course the final decision is in Ron's hands but if you are not satisfied I would get another opinion. I will keep you in my prayers and hope that you get better answers soon. Nina Quote Link to comment Share on other sites More sharing options...
bunny Posted December 2, 2005 Share Posted December 2, 2005 just want to second everything everyone said - my mom has been treated by her "second opinion" for 5 years now, and is doing great. prayers coming your way, too. xoxo amie Quote Link to comment Share on other sites More sharing options...
mayos Posted December 2, 2005 Share Posted December 2, 2005 I'm so sorry this is happening to you. Maybe a talk with Hospice can help...no matter how hard that decision may be. As for eating problems...you might want to try a drug called "MARINOL". It's based in marijuana somehow. It calmed my stomach and brought back hunger. Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted December 3, 2005 Share Posted December 3, 2005 Sounds like a dr. change might be needed. Or (assuming this is what Ron wants) just talk bluntly to the dr. "Treatment MAY kill, but the disease will CERATINLY kill. I'll go with my boots on, thank you. Or maybe I'll get lucky and the cancer will die first." I firmly believe that a patient who has the pertinent information is the only one with the right to decide. And it doesn't matter if the decision is no treatment, every chemo available, or travelling for snake oil. Quote Link to comment Share on other sites More sharing options...
Miami Janet Posted December 3, 2005 Share Posted December 3, 2005 Hi Janet, You didnt mention what Ron wants to do? I guess that would be the main factor for me...the treatment can sometimes be worse then the disease. He seems very young to be given up on. Anyway there is no easy answer on what to do...we always tried to do what my Mom wanted and in the end she refused further treatment as the side effects kept making her sich and putting her in the hospital and she wanted to be at home and rest. However my Mom was 78...there is a big difference I think..W e are wishing the best for you and Ron...Janet Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 5, 2005 Share Posted December 5, 2005 I am adding in my two cents about the Tarceva... I hope you get some positive answers. I know many have found that the EFGRs help a lot.... I have found great luck with the Iressa. Keep us posted. Lisa Quote Link to comment Share on other sites More sharing options...
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