Aa
Christmas help please!
My mom is 68, has had a double bypass and heart attack(1995), has late stage COPD and is on oxygen 24-7. She is a tough swede and does not give up! She was unfortunately DX with stage 3-C Ovarian Cancer in May 2008 and did the "big gun" taxol and carbo and did this for 17 weeks or infusions. She wants to live and completed all treatments with even a blood transfusion and many procritt injections. She has had a month off to be with me this x-mas.They have said less than a year but we do not accept that.... but mom thinks this is her last holiday with me. It is so hard. I am an only child and mom wants to live but has so many strikes against her. We had a consult in Seattle in November with a gynocologist oncologist and of course, she is not a candidate for surgery. We knew that. She has responded very well for the most part to the taxol-carbo cocktail, but severe P.N and fatigue. Due to the P.N she would like a different regime, but when I read about taxitere and doxcil, we can't do anything that has the risk of congestive heart failure as her heart is not good. And the side effect of PN is still one of the side effects. She is to start chemo again beginning Jan. 5th and is scared and I have been proactive in trying to research what would be the best regime with the least side effects. The P.N. is too severe to do the above regime again. But she is willing if nothing else will work. Please advise what you think would be the best protocol for her. Her tumors shrunk and her CA 125 had gone down to the normal range but the PN is so severe. I have also heard there is something new in a clinical trial that is most likely going to be approved by the FDA by 2009. Does anyone know what it is? I want her to be prepared in Jan to be more proactive in advocating for herself and to be prepared to have a sit down with information for her oncologist who is very intimidating. I am in the medical field and he does not like it when I go and ask questions and take notes. But he is keeping mom alive so she trusts him. It is his bedside manner that needs improvement and he is not forthcoming with information. What could be recommended that does not cause P.N., and does not have issues of congestive heart failure. What could she try that is effective but has the least amount of side effets? I know this community is well informed and I need help for my dear mom. What are our options and your suggestions? Please help us. Thank-you in advance.
You have a wonderful christmas! I so appreciate your information and taking the time to help others! What a wonderful gift you all give to those who are in need! I want you all to know I understand your trials and tribulations and as we all journey down this path, may god bless each and everyone one of you. You are all angels on earth! Mom and I are dreading this next round of Chemo and the not knowing what it will be is difficult. But we are enjoying our time together! Merry christmas eve to you all!
I am sorry, but as bad as that awful Dr is, he is the only person right now that can tell you what protocol your mom should be on. Has he said what she is going to be on in January? Has her CA risen since she finished? Why is he putting her back on chemo if her numbers are in range? Has she had a CT scan since her last chemo? If so is there any evidence of disease. (ED)
I have found that the general oncologists that are treating gynecological cancer patients tend to be a little more insecure and defensive. They know they don't know what they are doing and they probably have to consult a gynonc & they resent it. If he isn't consulting a gynonc than he is not doing right by your mother. H*ll, with that attitude he isn't doing right by her anyway. She should not be subjected to his horrible manners with everything else she has going on. It doesn't sound like you have a lot of choices in Drs there, but if your insurance covers gynonc consults why don't you see if a gynonc can come up with a plan for her and her current Dr can just carry that out. He may not like that because he sounds like a brat, (yes, adult Drs can be brats!!!) but this is your mother's life and I would just stare him right back down when he tries to intimidate either one of you. Gail (above) only has access to a general onc where she lives so she goes to MD Anderson in Tx where a whole team of Drs come up with a plan for her and her local Dr just administers it. She is not the only one that does that.
I am very lucky that my gynonc is the greatest guy in the whole world. I will not go into all of his virtues, but he has everything you could ever want from a compassionate, caring, up on the latest research Dr. When one of his patients and my friend passed away from this in Feb. he cried with me. Anyone who says there aren't any Drs that care haven't met him. His partner on the other hand is a stone cold b!tch and if she ever comes into my hospital room again, I am going to throw something at her.
We can tell you the side effects that we have had from various drugs, but everyone reacts so differently there really is no telling what your mom's reactions might be. I have found that throughout all of my chemo's, nausea, severe vomiting, bone crunching pain and HORRIBLE ragdoll fatigue have been my constant problems. I had to be hospitalized for dehydration about 8 times while on Gemzar, and a several other times with other chemos. Still I know I am lucky because I have not had the blood problems that are so debilitating, & I had only minor PN with the carbo/taxol. I have severe allergic reactions to steroids, benadryl and all of that other pre chemo stuff they give you so I don't take those, even though when I first started they had a gurney out in the hall just in case I went into cardiac arrest and had to be wheeled over to the hospital. I am allergic to so many drugs, but yet I haven't had the red skin blistering, heart attack problems they thought I would have without the steroids. So, yes, in a lot of ways I have been very lucky.
I did the carbo/taxol for 6 rounds (which seems to work for everyone for at least a short time. If only they could make it last), than my CA started to rise 4 mths after I finished so I went on Gemzar (that seems to cause a lot of problems for a lot of people), topotecan and now I am on a "clinical trial" of carbotaxol and doxil. I say clinical trial because there was a french study done at the end of 2007 that said that combo works well for late stage patients and my onc has never used it with anyone before. He has a large practice, but he said I was the first person he thought was a good candidate for it. You need a Dr like that who isn't afraid to do what he thinks best no matter what the AMA says.
Gail is right you should ask this on the expert forum. Scroll down any page in the ovca forum and you will see Related Forums on the bottom right hand side. Dr G is good about actually answering questions. If you give her enough info such as the heart and COPD she will probably give you a list of drugs that your mom might try. She only answers two questions a day so it may take a few days to be able to post a question.
My onc told me two months ago that I have somewhere between 6 & 18 months left. I am only 52 and I sure am not ready to go anywhere, but just in case I am acting like this might be my last Christmas. I am going everywhere I can, looking at lights, visiting with friends, seeing the ice show I have meant to see the last two years, baking cookies and pastries I haven't made in years and decorating the house like it is the White House or something. I am also going to be packing the Christmas bulbs away so that it will be easy for my husband to know which bulbs go to my girls, which bulbs go to his girls, what stuff we have collected together, & stuff I want him to keep until he passes before he gives them to my girls. I am not depressed and I am not being maudlin, I did the same thing last year...just in case. As long as your mom is using this opportunity to do all the things she can and making good memories for her friends and family than I wouldn't worry about it. If on the other hand, she is acting depressed and unhappy than maybe she should talk to a minister or counselor. She absolutely CAN NOT let this bad news rob her of whatever joy she might be able to have in her life between now and than.
Sorry to prattle on. Not feeling well, but I wanted to answer your post. It is hard to watch loved ones go through this, especially at this time of the year.
Good luck
Jan
I have found that the general oncologists that are treating gynecological cancer patients tend to be a little more insecure and defensive. They know they don't know what they are doing and they probably have to consult a gynonc & they resent it. If he isn't consulting a gynonc than he is not doing right by your mother. H*ll, with that attitude he isn't doing right by her anyway. She should not be subjected to his horrible manners with everything else she has going on. It doesn't sound like you have a lot of choices in Drs there, but if your insurance covers gynonc consults why don't you see if a gynonc can come up with a plan for her and her current Dr can just carry that out. He may not like that because he sounds like a brat, (yes, adult Drs can be brats!!!) but this is your mother's life and I would just stare him right back down when he tries to intimidate either one of you. Gail (above) only has access to a general onc where she lives so she goes to MD Anderson in Tx where a whole team of Drs come up with a plan for her and her local Dr just administers it. She is not the only one that does that.
I am very lucky that my gynonc is the greatest guy in the whole world. I will not go into all of his virtues, but he has everything you could ever want from a compassionate, caring, up on the latest research Dr. When one of his patients and my friend passed away from this in Feb. he cried with me. Anyone who says there aren't any Drs that care haven't met him. His partner on the other hand is a stone cold b!tch and if she ever comes into my hospital room again, I am going to throw something at her.
We can tell you the side effects that we have had from various drugs, but everyone reacts so differently there really is no telling what your mom's reactions might be. I have found that throughout all of my chemo's, nausea, severe vomiting, bone crunching pain and HORRIBLE ragdoll fatigue have been my constant problems. I had to be hospitalized for dehydration about 8 times while on Gemzar, and a several other times with other chemos. Still I know I am lucky because I have not had the blood problems that are so debilitating, & I had only minor PN with the carbo/taxol. I have severe allergic reactions to steroids, benadryl and all of that other pre chemo stuff they give you so I don't take those, even though when I first started they had a gurney out in the hall just in case I went into cardiac arrest and had to be wheeled over to the hospital. I am allergic to so many drugs, but yet I haven't had the red skin blistering, heart attack problems they thought I would have without the steroids. So, yes, in a lot of ways I have been very lucky.
I did the carbo/taxol for 6 rounds (which seems to work for everyone for at least a short time. If only they could make it last), than my CA started to rise 4 mths after I finished so I went on Gemzar (that seems to cause a lot of problems for a lot of people), topotecan and now I am on a "clinical trial" of carbotaxol and doxil. I say clinical trial because there was a french study done at the end of 2007 that said that combo works well for late stage patients and my onc has never used it with anyone before. He has a large practice, but he said I was the first person he thought was a good candidate for it. You need a Dr like that who isn't afraid to do what he thinks best no matter what the AMA says.
Gail is right you should ask this on the expert forum. Scroll down any page in the ovca forum and you will see Related Forums on the bottom right hand side. Dr G is good about actually answering questions. If you give her enough info such as the heart and COPD she will probably give you a list of drugs that your mom might try. She only answers two questions a day so it may take a few days to be able to post a question.
My onc told me two months ago that I have somewhere between 6 & 18 months left. I am only 52 and I sure am not ready to go anywhere, but just in case I am acting like this might be my last Christmas. I am going everywhere I can, looking at lights, visiting with friends, seeing the ice show I have meant to see the last two years, baking cookies and pastries I haven't made in years and decorating the house like it is the White House or something. I am also going to be packing the Christmas bulbs away so that it will be easy for my husband to know which bulbs go to my girls, which bulbs go to his girls, what stuff we have collected together, & stuff I want him to keep until he passes before he gives them to my girls. I am not depressed and I am not being maudlin, I did the same thing last year...just in case. As long as your mom is using this opportunity to do all the things she can and making good memories for her friends and family than I wouldn't worry about it. If on the other hand, she is acting depressed and unhappy than maybe she should talk to a minister or counselor. She absolutely CAN NOT let this bad news rob her of whatever joy she might be able to have in her life between now and than.
Sorry to prattle on. Not feeling well, but I wanted to answer your post. It is hard to watch loved ones go through this, especially at this time of the year.
Good luck
Jan
Mom lives in Yakima, and I live here in Vancouver... any research info from OHSU would be greatly appreciated! I need mom to continue to have hope. Thank-you all so much for your information and time you are taking for us! God bless you all!
Thank-you for taking the time to respond. God bless you! I read your response to mom and she says "You are an angel!" I agree and thank-you so much for your informative and timely response! We are so appreciative to all of you!
I'm sorry to hear about your Mom having such a tough time. I take it she's in Vancouver also. I don't know which onc she has but my Dad had Dr. Simon. He's a bit north in Salmon Creek but he was very peaceful to be around and helpful. Which cardiologist does she have? It's important the cardio and oncologist work together in terms of balancing the medications. My Dad (also had heart failure) had Dr. Kovaric and Dr. Swensen (an EP).
I can ask my husband to check with the oncology dept. at OHSU, see who they might recommend or what's going on there in terms of research. Hope you're staying warm through this snow storm. Things will warm up this weekend.
I can ask my husband to check with the oncology dept. at OHSU, see who they might recommend or what's going on there in terms of research. Hope you're staying warm through this snow storm. Things will warm up this weekend.
COMMUNITY LEADER
The chemotherapy agent in clinical trial that may be approved in 2009 is probably Avastin. Several ladies here are on it already, and will hopefully stop by to tell you what side effects they have experieinced from it. It seems to be doing well for most of them. As for others to try, there are several, even with Doxil not being an option. But, there is no way for us to tell which ones will cause PN and which ones won't for your mom. I had it badly from Taxol, too, but it did eventually go away. I currently have it in my fingers from the aromotase inhibitor pill I take, but not everyone gets it. I do have to say from my experieince, Taxol was the one that caused it more than any of the others.
It is inexcusable for your mom's doctor to be so dismissive and unwilling to explain himself to you. I take it he is an Oncologist, and not a GYN/ONC? Is your mom willing to look into finding another doctor? The one she has may be a good one, but any doctor who is unwilling to tell the patient or family his plans is one that seems to have something to hide. She is paying him, so she should expect complete satisfaction. I know how hard it is to tell some people that, though. I found myself in that same situation until I decided to look elsewhere for a second opinion two years after I was diagnosed. Best decision I ever made!
Just like no one here can tell you which chemo has the least chance of causing PN, we cannot tell you which one has the least side effects, in general. In addition to Taxol/Carbo, I've had Topotecan, Gemzar, Navelbine, Doxil, Taxotere, and now an estrogren blocking aromotase inhibitor pill. Doxil wasn't hard on me, and my heart function actually improved on it! But for others, the side effects are terrible. Some can deal with Taxotere, but I had an allergic reaction to it, and my hands got red, scaly, and peeled like I had a terrible sunburn. The point is everyone reacts differently, so I'm afraid the best way to tell which one will perform the best for your mom will simply be with trial and error. This is something you should be able to discuss with her doctor. If he won't budge, then it's time to seek someone else. You may also try asking this question on the Doctor's forum, but she only takes two questions per day, and it is sometimes hard to fall into that two question window.
Wishing you both a very Merry Christmas. I hope you enjoy the time you have together this season, and here's to hoping and praying this is just one of many more Christmases you share with each other.
Gail
It is inexcusable for your mom's doctor to be so dismissive and unwilling to explain himself to you. I take it he is an Oncologist, and not a GYN/ONC? Is your mom willing to look into finding another doctor? The one she has may be a good one, but any doctor who is unwilling to tell the patient or family his plans is one that seems to have something to hide. She is paying him, so she should expect complete satisfaction. I know how hard it is to tell some people that, though. I found myself in that same situation until I decided to look elsewhere for a second opinion two years after I was diagnosed. Best decision I ever made!
Just like no one here can tell you which chemo has the least chance of causing PN, we cannot tell you which one has the least side effects, in general. In addition to Taxol/Carbo, I've had Topotecan, Gemzar, Navelbine, Doxil, Taxotere, and now an estrogren blocking aromotase inhibitor pill. Doxil wasn't hard on me, and my heart function actually improved on it! But for others, the side effects are terrible. Some can deal with Taxotere, but I had an allergic reaction to it, and my hands got red, scaly, and peeled like I had a terrible sunburn. The point is everyone reacts differently, so I'm afraid the best way to tell which one will perform the best for your mom will simply be with trial and error. This is something you should be able to discuss with her doctor. If he won't budge, then it's time to seek someone else. You may also try asking this question on the Doctor's forum, but she only takes two questions per day, and it is sometimes hard to fall into that two question window.
Wishing you both a very Merry Christmas. I hope you enjoy the time you have together this season, and here's to hoping and praying this is just one of many more Christmases you share with each other.
Gail
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