Papillary Renal Cell Carcinoma- Anyone Experiencing This or is a Survivor?

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Comments

  • bangormom
    bangormom Member Posts: 58
    #22
    dawnmomofthree said:

    Hope for a Clinical Trial
    Hi Maryann,

    How are you doing this week? I have been thinking about you and praying for you this week. How is the Afinitor going for you? Is Afinitor the new drug for PRCC that just came out?

    Well we had a teleconference with my father-in-law's doctor today and got a lot of our questions answered. I felt like the doctor did take a lot of time to answer our questions. The bad news is that my fil's cancer has spread to several lymph nodes in his abdomen and he is no longer a surgical candidate. We are going to try and get him in the clinical trial for PRCC. If that doesn't work out, he will start on Torisel (don't know if I spelled this correctly). Anyway, we are very discouraged that the cancer has spread, but at least there is still treatment options available.

    Hope you are having a good week. Take care of yourself.

    Dawn

    Hi Dawn,
    I'm glad that you
    Hi Dawn,

    I'm glad that you got your questions answerd and I am saddend that your fil is not a canidate for surgery. If you have the chance ask his doctor about what used to be called xl880, it's a trial but they changed to name and for the life of me I can't seem to remember what they changed it to. With this trial you can only have tried one other drug ie; sutent or torisel. that is whay I was not able to participate in it, but I have heard that alot of papillary patients are seeing shrinkage and that is great news.

    Afinitor does the same as torisel, only it is in pill form, I will start on friday. I feel about the same, just my cough is worse. I have to really get on the ball and start looking at clinical trials for me, becuase if the afinitor doesn't work then it is pallitive care for me, and I am not ready for that yet. How is your fil doing? How is he feeling? let me know. Thanks.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #23
    bangormom said:

    Hi Dawn,
    I'm glad that you
    Hi Dawn,

    I'm glad that you got your questions answerd and I am saddend that your fil is not a canidate for surgery. If you have the chance ask his doctor about what used to be called xl880, it's a trial but they changed to name and for the life of me I can't seem to remember what they changed it to. With this trial you can only have tried one other drug ie; sutent or torisel. that is whay I was not able to participate in it, but I have heard that alot of papillary patients are seeing shrinkage and that is great news.

    Afinitor does the same as torisel, only it is in pill form, I will start on friday. I feel about the same, just my cough is worse. I have to really get on the ball and start looking at clinical trials for me, becuase if the afinitor doesn't work then it is pallitive care for me, and I am not ready for that yet. How is your fil doing? How is he feeling? let me know. Thanks.

    Maryann

    GSK Clinical Trial
    Hi Maryann,

    Thanks for the message. I am following your advice and trying to get my fil into the GSK clinical trial (formerly the xl880 clinical trial). It's too soon yet to see if he will qualify, but I hope that he does. After reading your post about how you can't be in the trial if you have taken several drugs, I think this is a wise first step before we try other things. On a positive note, my fil still feels completely normal. You'd never guess his abdomen has several cancer tumors growing in it.

    I hope that the Afinitor works well for you and hopefully you won't even have to mess with a clinical trial. Is your cough due to mets to your lungs, or something else?

    Alwayshavehope, if you are out there I hope that your mother is doing ok. You haven't posted in awhile so I hope everything is ok.

    Take care ladies,
    Dawn
  • bangormom
    bangormom Member Posts: 58
    #24
    dawnmomofthree said:

    GSK Clinical Trial
    Hi Maryann,

    Thanks for the message. I am following your advice and trying to get my fil into the GSK clinical trial (formerly the xl880 clinical trial). It's too soon yet to see if he will qualify, but I hope that he does. After reading your post about how you can't be in the trial if you have taken several drugs, I think this is a wise first step before we try other things. On a positive note, my fil still feels completely normal. You'd never guess his abdomen has several cancer tumors growing in it.

    I hope that the Afinitor works well for you and hopefully you won't even have to mess with a clinical trial. Is your cough due to mets to your lungs, or something else?

    Alwayshavehope, if you are out there I hope that your mother is doing ok. You haven't posted in awhile so I hope everything is ok.

    Take care ladies,
    Dawn

    Hi Dawn,
    I'm glad that your
    Hi Dawn,

    I'm glad that your fil is considering that trial, espeacily since they have such strict guidelines. I've heard from others that the side effects are really mild compared to the rest of the stuff that is out there, and that it shows a real promise of shrinking the tumors, that gets us a step closer to a cure. We can all pray.

    We don't know whats causing my cough, there doesn't seem to be an infection, but boy is it annoying. I haven't started the afinitor yet, I will tomorrow, I am afraid of being allergic to it. My husband is home on friday, so that is when I'll start it, just afraid to he home alone and have a reaction to it, after the anafelactic shock I had with torisel, I know that the ems wouldn't get here in time and I don't want my kids coming home from school and finding me dead they would wined up in the funny farm if you know what I mean.

    I too am worried about Always have hope, I pray that her and her mom are ok, it's never a good sighn when someone goes this long in not posting who regulary post. So Always have hope if you read this know that I am thinking about you and your mom.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #25
    bangormom said:

    Hi Dawn,
    I'm glad that your
    Hi Dawn,

    I'm glad that your fil is considering that trial, espeacily since they have such strict guidelines. I've heard from others that the side effects are really mild compared to the rest of the stuff that is out there, and that it shows a real promise of shrinking the tumors, that gets us a step closer to a cure. We can all pray.

    We don't know whats causing my cough, there doesn't seem to be an infection, but boy is it annoying. I haven't started the afinitor yet, I will tomorrow, I am afraid of being allergic to it. My husband is home on friday, so that is when I'll start it, just afraid to he home alone and have a reaction to it, after the anafelactic shock I had with torisel, I know that the ems wouldn't get here in time and I don't want my kids coming home from school and finding me dead they would wined up in the funny farm if you know what I mean.

    I too am worried about Always have hope, I pray that her and her mom are ok, it's never a good sighn when someone goes this long in not posting who regulary post. So Always have hope if you read this know that I am thinking about you and your mom.

    Maryann

    Good Luck with the Afinitor
    Hi Maryann,

    Just wanted to drop you a quick note to let you know that I am praying that you have a good outcome with the Afinitor. With a history of anaphalactic shock, I can't believe they even let you take it at home without direct medical supervision. Does your husband have an epinephrine shot to give you if you have a reaction to the Afinitor? Anyway, please be careful and know that I am certainly thinking good thoughts for you.

    Let me know how it goes when you get a chance.

    Take care,
    Dawn
  • bangormom
    bangormom Member Posts: 58
    #26
    dawnmomofthree said:

    Good Luck with the Afinitor
    Hi Maryann,

    Just wanted to drop you a quick note to let you know that I am praying that you have a good outcome with the Afinitor. With a history of anaphalactic shock, I can't believe they even let you take it at home without direct medical supervision. Does your husband have an epinephrine shot to give you if you have a reaction to the Afinitor? Anyway, please be careful and know that I am certainly thinking good thoughts for you.

    Let me know how it goes when you get a chance.

    Take care,
    Dawn

    Hi Dawn,
    Thanks for your
    Hi Dawn,

    Thanks for your prayers and thoughts. I go into the doctors today and I will take it 1 hr, before I have my appointment, and that is a good idea, and epi pen, I am going to ask the doctor if I can have one. That was really good thanks so much, you and your family are in my prayers.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #27
    bangormom said:

    Hi Dawn,
    Thanks for your
    Hi Dawn,

    Thanks for your prayers and thoughts. I go into the doctors today and I will take it 1 hr, before I have my appointment, and that is a good idea, and epi pen, I am going to ask the doctor if I can have one. That was really good thanks so much, you and your family are in my prayers.

    Maryann

    How did it go?
    Hey Maryann,

    Just wondering how you did taking the Afinitor yesterday??

    Dawn
  • bangormom
    bangormom Member Posts: 58
    #28
    dawnmomofthree said:

    How did it go?
    Hey Maryann,

    Just wondering how you did taking the Afinitor yesterday??

    Dawn

    Hi Dawn,
    So far so good, I
    Hi Dawn,

    So far so good, I am afraid to jinx it though. I have had 2 full doses, and today will be my 3rd day. We here are all praying that it works. How's your fil? please keep me posted on him.

    The side effects are kind of scary from what I've read so far, but I'm hoping that I don't have it so bad. We got out of the house yesterday and went to the flea market, didn't buy anything, but it was nice, the sad thing we found out how hard it is to push a wheel chair in gravel. I only had to use the chair for the second half of it, but I got out and that does improve one's mood.

    The doctor seems to have forgotten what he told me. He told me to take it on tuesday and not on wensday or thursday, I told him I waited till friday because of my fear, and he said that he wanted me to take for 3 days to see how the se's and reaction went. But that is not what he told me. He seems to forget things, and I know it's not me because I still have a pretty good memory. This isn't the first time we have had this tho, he also brought up putting in the port again, he was talking about that a month ago, I think he has to many patients. He's the only onc in my insurance plan for this county, but he is a good doctor. Anyhow I have to get going got hungery and I have to eat while I'm hungery or it goes away then I wined up not eating. Talk to you later.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #29
    bangormom said:

    Hi Dawn,
    So far so good, I
    Hi Dawn,

    So far so good, I am afraid to jinx it though. I have had 2 full doses, and today will be my 3rd day. We here are all praying that it works. How's your fil? please keep me posted on him.

    The side effects are kind of scary from what I've read so far, but I'm hoping that I don't have it so bad. We got out of the house yesterday and went to the flea market, didn't buy anything, but it was nice, the sad thing we found out how hard it is to push a wheel chair in gravel. I only had to use the chair for the second half of it, but I got out and that does improve one's mood.

    The doctor seems to have forgotten what he told me. He told me to take it on tuesday and not on wensday or thursday, I told him I waited till friday because of my fear, and he said that he wanted me to take for 3 days to see how the se's and reaction went. But that is not what he told me. He seems to forget things, and I know it's not me because I still have a pretty good memory. This isn't the first time we have had this tho, he also brought up putting in the port again, he was talking about that a month ago, I think he has to many patients. He's the only onc in my insurance plan for this county, but he is a good doctor. Anyhow I have to get going got hungery and I have to eat while I'm hungery or it goes away then I wined up not eating. Talk to you later.

    Maryann

    So glad to hear from you
    Hi Maryann,

    I was so glad to hear from you today. I am so thankful for your guidance with respect to my fil and the PRCC diagnosis that I guess I have gotten kind of attached to you. I kept checking the site and hoping for you to say that you were doing ok! Anyway, I am so happy that so far you are doing ok on the Afinitor. It is also great that you were able to get out a little bit at the flea market. Living your life as much as possible is crucial--as I'm sure you have realized. What part of the country do you live in? Maine? Just guessing by your user name. I live in KY and we are getting a ton of rain right now. We always get a lot of rain in the spring.

    My fil is feeling fine physically, but he is very frightened mentally (honestly, we all are very frightened). We are hopeful that he will get in the GSK clinical trial. This takes time though and all I can do is keep calling and praying that he gets in. He needs treatment. He is asymptomatatic right now, but in one months time, we were dismayed to learn that his tumors showed "noticeable growth."

    Well I've got to get to bed and get some sleep or I'll never be able to take care of my kids tomorrow! Keep fighting and know that I am thinking and praying for good things for you.

    Have a great week.
    Dawn

    P.S. Alwayshavehope, I hope that you are doing ok. What ever you are going through, Maryann and I are here for you.
  • bangormom
    bangormom Member Posts: 58
    #30
    dawnmomofthree said:

    So glad to hear from you
    Hi Maryann,

    I was so glad to hear from you today. I am so thankful for your guidance with respect to my fil and the PRCC diagnosis that I guess I have gotten kind of attached to you. I kept checking the site and hoping for you to say that you were doing ok! Anyway, I am so happy that so far you are doing ok on the Afinitor. It is also great that you were able to get out a little bit at the flea market. Living your life as much as possible is crucial--as I'm sure you have realized. What part of the country do you live in? Maine? Just guessing by your user name. I live in KY and we are getting a ton of rain right now. We always get a lot of rain in the spring.

    My fil is feeling fine physically, but he is very frightened mentally (honestly, we all are very frightened). We are hopeful that he will get in the GSK clinical trial. This takes time though and all I can do is keep calling and praying that he gets in. He needs treatment. He is asymptomatatic right now, but in one months time, we were dismayed to learn that his tumors showed "noticeable growth."

    Well I've got to get to bed and get some sleep or I'll never be able to take care of my kids tomorrow! Keep fighting and know that I am thinking and praying for good things for you.

    Have a great week.
    Dawn

    P.S. Alwayshavehope, I hope that you are doing ok. What ever you are going through, Maryann and I are here for you.

    Hi Dawn,
    Thank you so much
    Hi Dawn,

    Thank you so much for your kind words, they really mean a lot tome. And yes, we do get attached to those we 'talk' to online. I do look forward to reading your posts I to also wish we could hear from always have hope I pray she is ok.

    I am actually in pennsylvania. I like 'talking' to you, being able to help someone is a good feeling, it helps me a lot. When your first dx'x with this you really don't know where to turn or who to talk to. It's very lonely, and the fear is overwhelming, I don't think you ever get over the fear, you just learn how to deal with it in a different way.

    Noticeable growth is scary, I have been told that also, and this one lymph node in my neck is now visiable when I look in the mirror it is disturbing. But I am taking Afinitor, and today will be my forth day, so far not to bad but it is early yet. I am holding on to hope that maybe by the end of next week that noticeable node will start to shrink. But I know I have to balance it out with stable, it may not shrink but stable is better then growth.

    Please know that I do understand your fil's and your fears, it's great that he is still feeling good physicaly that helps with the mental state. The wait to start the trial is nerve racking as I can understand, it's the same as waiting for insurance to cover the meds and then wondering what the copay will be. Waiting to start treatment is hard, we want to get going on it so we feel proactive. The sit and do nothing never feels right. How long did they say you would have to wait? What facility is he going to go to for this trial? I pray it's not much longer and God knows I hope and pray it works.

    I have to get going the kids are leaving for school soon and I need to make sure they have every thing. (I usually check in here daily)

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #31
    bangormom said:

    Hi Dawn,
    Thank you so much
    Hi Dawn,

    Thank you so much for your kind words, they really mean a lot tome. And yes, we do get attached to those we 'talk' to online. I do look forward to reading your posts I to also wish we could hear from always have hope I pray she is ok.

    I am actually in pennsylvania. I like 'talking' to you, being able to help someone is a good feeling, it helps me a lot. When your first dx'x with this you really don't know where to turn or who to talk to. It's very lonely, and the fear is overwhelming, I don't think you ever get over the fear, you just learn how to deal with it in a different way.

    Noticeable growth is scary, I have been told that also, and this one lymph node in my neck is now visiable when I look in the mirror it is disturbing. But I am taking Afinitor, and today will be my forth day, so far not to bad but it is early yet. I am holding on to hope that maybe by the end of next week that noticeable node will start to shrink. But I know I have to balance it out with stable, it may not shrink but stable is better then growth.

    Please know that I do understand your fil's and your fears, it's great that he is still feeling good physicaly that helps with the mental state. The wait to start the trial is nerve racking as I can understand, it's the same as waiting for insurance to cover the meds and then wondering what the copay will be. Waiting to start treatment is hard, we want to get going on it so we feel proactive. The sit and do nothing never feels right. How long did they say you would have to wait? What facility is he going to go to for this trial? I pray it's not much longer and God knows I hope and pray it works.

    I have to get going the kids are leaving for school soon and I need to make sure they have every thing. (I usually check in here daily)

    Maryann

    More Tough News
    Hi Maryann,

    Sorry I haven't posted in a day or two. We just found out today that my fil will not qualify for the GSK clinical trial for papillary RCC. His kidney function is just too poor. The hard part for me was that a month ago the kidney function was borderline and now it is worse. We now have to be really careful with all of his diagnostic tests too if they use contrast dye, etc. I just flipped out for about an hour today and I couldn't seem to figure out what to do. I felt such a sense of panic and I'm not even the patient! Anyway, after I ate a high fat lunch (I'm an emotional eater) I decided to research his other treatment options and just move forward. Have you had any problems with your kideny function? You are much younger than my fil so probably not.

    I am so glad that the Afinitor is working out for you so far. I hope your week is going well. I need to run and get my daughter to gymnastics class. Sometimes just taking care of my kids and focusing on our numerous blessings is enough to improve my mood. I'll try to post a more positive note to you later.

    Take care of yourself,
    Dawn
  • bangormom
    bangormom Member Posts: 58
    #32
    dawnmomofthree said:

    More Tough News
    Hi Maryann,

    Sorry I haven't posted in a day or two. We just found out today that my fil will not qualify for the GSK clinical trial for papillary RCC. His kidney function is just too poor. The hard part for me was that a month ago the kidney function was borderline and now it is worse. We now have to be really careful with all of his diagnostic tests too if they use contrast dye, etc. I just flipped out for about an hour today and I couldn't seem to figure out what to do. I felt such a sense of panic and I'm not even the patient! Anyway, after I ate a high fat lunch (I'm an emotional eater) I decided to research his other treatment options and just move forward. Have you had any problems with your kideny function? You are much younger than my fil so probably not.

    I am so glad that the Afinitor is working out for you so far. I hope your week is going well. I need to run and get my daughter to gymnastics class. Sometimes just taking care of my kids and focusing on our numerous blessings is enough to improve my mood. I'll try to post a more positive note to you later.

    Take care of yourself,
    Dawn

    Hi Dawn,
    I am so sorry to
    Hi Dawn,

    I am so sorry to hear that he doesn't qualify for the trial, because that sounds so promissing. My kidney funtion has been good so far, but with these treatments no one knows how it will be months from now. I cried the whole day when I got turned down for it, it was quite a blow as I knew my options are running out.

    Hey it's ok not to post, when I am not feeling to well I don't post either. Your daughter is in gymnastics? My daughter does them for cheerleading, tho I couldn't get her there last night my car is acting up and I am not up to getting stuck along side the road. Does your daughter do cheer too? Focusing on the kids is a good thing, it helps me a lot, tonight is my daughters induction into the national honor society, it's at 7:30 pm at the hs, and I have to stay awake for this, this is one of my dreams, and she worked so hard for it. I ablsolutly refuse to miss it no matter what comes up, I am going se and all.

    I hope we hear from Always have hope, her mom wasn't doing to well the last post, I really pray everything is ok, so Always if you read this please update, we are here for you no matter what. Well I have to go now, kids gotta go to school. Talk to you all later, and try not to get depressed, it's hard I know, but there are other treatments and his journey has just begun.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #33
    bangormom said:

    Hi Dawn,
    I am so sorry to
    Hi Dawn,

    I am so sorry to hear that he doesn't qualify for the trial, because that sounds so promissing. My kidney funtion has been good so far, but with these treatments no one knows how it will be months from now. I cried the whole day when I got turned down for it, it was quite a blow as I knew my options are running out.

    Hey it's ok not to post, when I am not feeling to well I don't post either. Your daughter is in gymnastics? My daughter does them for cheerleading, tho I couldn't get her there last night my car is acting up and I am not up to getting stuck along side the road. Does your daughter do cheer too? Focusing on the kids is a good thing, it helps me a lot, tonight is my daughters induction into the national honor society, it's at 7:30 pm at the hs, and I have to stay awake for this, this is one of my dreams, and she worked so hard for it. I ablsolutly refuse to miss it no matter what comes up, I am going se and all.

    I hope we hear from Always have hope, her mom wasn't doing to well the last post, I really pray everything is ok, so Always if you read this please update, we are here for you no matter what. Well I have to go now, kids gotta go to school. Talk to you all later, and try not to get depressed, it's hard I know, but there are other treatments and his journey has just begun.

    Maryann

    Checking In
    Hi Maryann,

    How are you doing this week? Still taking the Afinitor? Sorry I haven't posted in about a week. My husband got whooping cough and 2 of my 3 children even came down with it even though they have been immunized. No big problem for my son and husband, but my 2 year old was just too small to handle it. We ended up at the Children's Hospital here for her but she is doing much better now.

    Anyway, my fil started treatment this last Friday. He decided to try a Phase I clinical trial that combines Sudent (sp?) and some other drug. It is a phase I, but several papillary patients have had good results. So far he is tolerating the drugs ok. We are still disappointed that he can't be in the GSK clinical trial but I am very encouraged that he is starting treatment for this.

    My daughter is in tumbling and dance right now. She just had her dance recital last night. She wants to do the dance competition next year so we have try outs in a couple of weeks. She doesn't cheer yet, she is only 6, but that will probably start in a year or two. How old is your daughter? Also congrats to her on the induction into the National Honor society. You must be very proud.

    Take care. I'll try to check in a little more this week.
    Dawn

    P.S. Hope you are doing ok Alwayshavehope.
  • bangormom
    bangormom Member Posts: 58
    #34
    dawnmomofthree said:

    Checking In
    Hi Maryann,

    How are you doing this week? Still taking the Afinitor? Sorry I haven't posted in about a week. My husband got whooping cough and 2 of my 3 children even came down with it even though they have been immunized. No big problem for my son and husband, but my 2 year old was just too small to handle it. We ended up at the Children's Hospital here for her but she is doing much better now.

    Anyway, my fil started treatment this last Friday. He decided to try a Phase I clinical trial that combines Sudent (sp?) and some other drug. It is a phase I, but several papillary patients have had good results. So far he is tolerating the drugs ok. We are still disappointed that he can't be in the GSK clinical trial but I am very encouraged that he is starting treatment for this.

    My daughter is in tumbling and dance right now. She just had her dance recital last night. She wants to do the dance competition next year so we have try outs in a couple of weeks. She doesn't cheer yet, she is only 6, but that will probably start in a year or two. How old is your daughter? Also congrats to her on the induction into the National Honor society. You must be very proud.

    Take care. I'll try to check in a little more this week.
    Dawn

    P.S. Hope you are doing ok Alwayshavehope.

    Hi Dawn,
    It's nice to hear
    Hi Dawn,

    It's nice to hear from you again, I have been so busy lately it wears me out. I am glad to hear your fil is getting treatment, the GSk is tough to get into I wanted to do it also.
    Let me know how he is doing with it.

    Dance competitions, wow at 6, I shouldn't be surprised, they do cheer hear at younger then that. Yes I am so proud of my daughter (Kat), lots of hard work. She's worried about cheer tryouts, they haven't even hired a coach yet, I'm not looking forward to it to much running around for me, I'll have to have help.

    Whooping cough, I heard that it is going around that stinks that your family has it, I hope they get better soon. We also have to be concerned about the 'swine flu', the doctor wants me to stay home and avoid getting it, but with kids in school they can bring it home and we wont know it till they show sighns it'll stink if I get it.

    So far the Afinitor side effects aren't too bad, not compared to sutent and nexavar, my blood work is a little off, and I am real tired but ok, I just hope it works for me.

    Gotta go make sure my kids get off to school so I'll check back later this week.

    Your family is in my prayers,

    Maryann
  • bangormom
    bangormom Member Posts: 58
    #35
    just moving this over so its
    just moving this over so its easer to read.
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #36
    bangormom said:

    Hi Dawn,
    It's nice to hear
    Hi Dawn,

    It's nice to hear from you again, I have been so busy lately it wears me out. I am glad to hear your fil is getting treatment, the GSk is tough to get into I wanted to do it also.
    Let me know how he is doing with it.

    Dance competitions, wow at 6, I shouldn't be surprised, they do cheer hear at younger then that. Yes I am so proud of my daughter (Kat), lots of hard work. She's worried about cheer tryouts, they haven't even hired a coach yet, I'm not looking forward to it to much running around for me, I'll have to have help.

    Whooping cough, I heard that it is going around that stinks that your family has it, I hope they get better soon. We also have to be concerned about the 'swine flu', the doctor wants me to stay home and avoid getting it, but with kids in school they can bring it home and we wont know it till they show sighns it'll stink if I get it.

    So far the Afinitor side effects aren't too bad, not compared to sutent and nexavar, my blood work is a little off, and I am real tired but ok, I just hope it works for me.

    Gotta go make sure my kids get off to school so I'll check back later this week.

    Your family is in my prayers,

    Maryann

    Hi Maryann,
    I am so glad you
    Hi Maryann,

    I am so glad you are tolerating the Afinitor so far. I pray that it works for you. When will you find out if it is working?

    We are over the worst of it with the whooping cough. I went out last week and bought a couple hundred dollars worth of groceries in preparation of the swine flu because I want to avoid that at all cost too if I can. It is funny though because I have used quite a bit of that food up so I guess I'll have to run out again when it comes to my area. You really need to do everything you can to avoid it, although I know with kids that will be difficult. Do you have help taking care of your kids, or are they old enough to care for themselves? My kids are 6, 4 and 2 so they still require a lot of hands on care.

    My fil is still ok so far with this clinical trial. I am a little concerned that he isn't feeling worse. Do you think this means that the medication isn't working for him? On a positive note, the papillary listserv has been really active lately and it looks like there are more and more options for you and my fil.

    Well I'm thinking about you and wishing you well. Enjoy the week.

    Dawn
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #37
    bangormom said:

    just moving this over so its
    just moving this over so its easer to read.

    Thanks Maryann,
    I would
    Thanks Maryann,

    I would have done this, but I didn't know how. I'm not very "tech savvy."

    Dawn
  • bangormom
    bangormom Member Posts: 58
    #38
    dawnmomofthree said:

    Thanks Maryann,
    I would
    Thanks Maryann,

    I would have done this, but I didn't know how. I'm not very "tech savvy."

    Dawn

    Hi Dawn,
    Believe me, I am so
    Hi Dawn,

    Believe me, I am so far from 'tech savy' it's funny! I am glad to hear the whopping cough is almost done with for you. No I don't have help, they're to old, at home here they are 14and 16 the 22yr old is on her own. But Jimmy my 14 yr old is high functioning autistic he's pretty independent, but his motor clumsyness makes it so he needs a little help.

    Don't worry that the meds aren't working because of lack of side effects, how long has he been on them? Sometimes it takes awhile for the se's to kick in. I have the same worry tho so I understand, today and yesterday the teeth have been hurting on the upper right side, it started with one then moved to another then back and forth, it hurts pretty bad, I don't know if it's the sinus or the teeth, I just know I can't afford a dentist right now, and I think if I have to go it'll put us behind in our bills which we just got caught up on. Oh well more tylenol and if it doesn't go away by tomarrow I'll have to do something about it.

    I sighned up for both of the list, the kidney and papillary, lots of info on there, that is why I suggested it, I keep checking the clinical trials and see there are a couple just for papillary, and if the afinitor doesn't work then thats is when I'll go for one. We wont know for awhile, I had my last scan in jan/feb and I go for my next scan in late may or june, but I am going to a different hospital for it so it'll be a different radioligist reading and I was on nexavar for a breif time then the time lapse before the start of afinitor, so I am not to sure what info we will get from the new scans to help determin if it is working or not. Anyway it feels better to take 'something' then do nothing at all, so it'll be awhile before we know more like august or september.

    Well got to get the kids out the door for school, chat with you soon and I am so happy that your fil is doing well, we'll keep praying for him.

    Maryann
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    #39
    bangormom said:

    Hi Dawn,
    Believe me, I am so
    Hi Dawn,

    Believe me, I am so far from 'tech savy' it's funny! I am glad to hear the whopping cough is almost done with for you. No I don't have help, they're to old, at home here they are 14and 16 the 22yr old is on her own. But Jimmy my 14 yr old is high functioning autistic he's pretty independent, but his motor clumsyness makes it so he needs a little help.

    Don't worry that the meds aren't working because of lack of side effects, how long has he been on them? Sometimes it takes awhile for the se's to kick in. I have the same worry tho so I understand, today and yesterday the teeth have been hurting on the upper right side, it started with one then moved to another then back and forth, it hurts pretty bad, I don't know if it's the sinus or the teeth, I just know I can't afford a dentist right now, and I think if I have to go it'll put us behind in our bills which we just got caught up on. Oh well more tylenol and if it doesn't go away by tomarrow I'll have to do something about it.

    I sighned up for both of the list, the kidney and papillary, lots of info on there, that is why I suggested it, I keep checking the clinical trials and see there are a couple just for papillary, and if the afinitor doesn't work then thats is when I'll go for one. We wont know for awhile, I had my last scan in jan/feb and I go for my next scan in late may or june, but I am going to a different hospital for it so it'll be a different radioligist reading and I was on nexavar for a breif time then the time lapse before the start of afinitor, so I am not to sure what info we will get from the new scans to help determin if it is working or not. Anyway it feels better to take 'something' then do nothing at all, so it'll be awhile before we know more like august or september.

    Well got to get the kids out the door for school, chat with you soon and I am so happy that your fil is doing well, we'll keep praying for him.

    Maryann

    How are you this week?
    Hey Maryann,

    Just checking in to see how you are doing this week. How are things?

    My fil is still feeling pretty good. Says he is a little tired, but he is still mowing the lawn and going to work and everything. He has been on the clinical trial now for about 2 weeks.

    This is a busy week for me. Yesterday was my son's 5th birthday and tomorrow is my daughter's 7th birthday. They are growing up way too fast!

    Have a good day. I'll check back in later.

    Dawn
  • bangormom
    bangormom Member Posts: 58
    #40
    dawnmomofthree said:

    How are you this week?
    Hey Maryann,

    Just checking in to see how you are doing this week. How are things?

    My fil is still feeling pretty good. Says he is a little tired, but he is still mowing the lawn and going to work and everything. He has been on the clinical trial now for about 2 weeks.

    This is a busy week for me. Yesterday was my son's 5th birthday and tomorrow is my daughter's 7th birthday. They are growing up way too fast!

    Have a good day. I'll check back in later.

    Dawn

    Hi Dawn,
    It's good to hear
    Hi Dawn,

    It's good to hear from you again, I am glad to hear that your fil is still feeling well. He sounds like a very strong man. If this trial includes sutent about weeks 3 or 4 is when my side effects kicked in, the high blood pressure, and the loss of taste. I didn't have the mouth sores or the hand and foot syndrome when I was on it and I hope your fil doesn't get those ones either.

    I am doing ok, just can't get the weight up, and this cough has to stop it keeps me up at night now. I wont get a scan until the middle of june, and that probable wont show if this is working or not, because I couldn't get a scan at the beginning it would have been to close to the last one. If it's working it's be stable which is better then progression, so I'll take that.

    Tell your kids I said happy birthday, my middle child's birthday is dec 5 to close to christmas. Your right you have a busy week. My daughter got a job at the pool at the park, she had another one, but he wasn't flexible enough for her to do cheer and band concerts so she had to turn that one down, and that one paid 3 dollars more than the pool. It's been a lesson for her as she now has learned that in life there are hard choices to make. My oldest daughter isn't talking to me right now, I couldn't give her money for her furniture so I guess I am being punished, oh well. I hope your mothersday was nice and maybe even restful. Mine was great. Will I have to wake these kids up for school now so I'll chat with you later.

    Maryann
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    #41
    bangormom said:

    Hi Dawn,
    It's good to hear
    Hi Dawn,

    It's good to hear from you again, I am glad to hear that your fil is still feeling well. He sounds like a very strong man. If this trial includes sutent about weeks 3 or 4 is when my side effects kicked in, the high blood pressure, and the loss of taste. I didn't have the mouth sores or the hand and foot syndrome when I was on it and I hope your fil doesn't get those ones either.

    I am doing ok, just can't get the weight up, and this cough has to stop it keeps me up at night now. I wont get a scan until the middle of june, and that probable wont show if this is working or not, because I couldn't get a scan at the beginning it would have been to close to the last one. If it's working it's be stable which is better then progression, so I'll take that.

    Tell your kids I said happy birthday, my middle child's birthday is dec 5 to close to christmas. Your right you have a busy week. My daughter got a job at the pool at the park, she had another one, but he wasn't flexible enough for her to do cheer and band concerts so she had to turn that one down, and that one paid 3 dollars more than the pool. It's been a lesson for her as she now has learned that in life there are hard choices to make. My oldest daughter isn't talking to me right now, I couldn't give her money for her furniture so I guess I am being punished, oh well. I hope your mothersday was nice and maybe even restful. Mine was great. Will I have to wake these kids up for school now so I'll chat with you later.

    Maryann

    Hi, you two....
    Hi, you two.

    I'm so sorry if I worried the both of you. I know I've not posted in a long time. I just sat here and caught up with reading your postings.

    Its been really hard around here lately. Mom's basically given up (or it seems that way to me). Ever since her oncologist told her a couple of months ago that she was stage 4 and that the fluid buildup was due to cancer cells in her abdomen and that there was no since in scanning her again, and that there was no further treatment options for her...... she's basically been sitting in the chair in the living room ever since. She's having a really hard time breathing and her energy level is non-existant, so she basically has to sit in the living room in her chair all day. Dad has to lift her up out of the chair now, because she can't get up herself due to low energy. Mom just sits or lays there, watches the food network on t.v., and well, doesn't go outside anymore.

    Then there was the couple of times within the last month that shes fallen. Her breathing is so hard and energy so low. The first time, she fell in the kitchen floor because she her feet were too heavy for her to lift due to fluid. The second time, she fell after walking back to bed in the middle of the night. It was really scary, because I woke up after 2 in the morning to mom's screaming. Of course, I couldn't lift her, but dad and I worked together. Don't know how we managed to get her back in bed that night. Lifting a person of the floor; its like dead weight. So, now after a couple of scares like that, it's become a realization that mom can't be left sitting at the house alone. Someone always has to be there with her, to make sure she doesn't fall, plus anytime she needs to excuse herself to the restroom, someone has to lift her up and help her there. It's really emotionally difficult when the day comes that you have to help your mom off a toilet. The past two weeks or so, her energy's gotten so poor that she's had to start using a toilet seat sitting next to her bed. (Sorry, I know that may not be exactly what you'll might like to hear).

    Mom went to the hospital last week and got out a couple days later. She just couldn't breath. I find it getting harder and harder to not look at her and want to cry. I had one of those moments this evening when she yelled at me. She gets frustrated sometimes and ends up yelling at people around her, which then makes me frustrated. Every day I see a change in her, and it's not for the better. I just wish that by some miracle she could be the mom I used to remember, that cancer wasn't a part of our daily lives, and that she and I could go do things together again. But that's just wishful thinking and I'm making myself tear up now just typing these words.

    Our neighbor is really great to us right now. She's what we call the cookie lady. She makes cookies a lot for us and brings them over. She actually made us a lasagne that we ate tonight. That really helps sometimes. I work all day and come home at night, wash dishes, fix dad and I dinner (mom doesn't hardley eat these days, although she's been into the Claussen dill pickles lately), and I run upstairs to my room for "me time". Nights are the only time that I can somewhat have a moment to breath and relax. I'm not complaining though, don't get me wrong. It actually has me worried lately and wondering if one day when mom's not here, will I regret having not spent more time with mom? I don't know, but sometimes I just have to be alone, or I think I'll go nuts...

    My sister and I were talking on the phone the other day for over an hour (and cried), one of those days mom was in the hospital. We talked about our fears and everything else you worry about concerning mom's situation. She told me mom had talked about how she was worried about how I would be when she's gone, because I am so attached to her. I wished I didn't know that, now. It makes me upset and want to cry more. I seem to be more and more emotionally upset right now due to not only mom's health being worse, but because frankly I am mad and tired of talking about death and what to do if mom dies and so on....I shouldn't be faced with these situations this early in life.

    Mom was told of a new drug out there for Kidney cancer that just came out, don't know what it was called, but she told them no, she didn't want to try it. The way she is so skinny/boney, and her current breathing problems and difficulties getting around, she just feels that it's not worth it. That last treatment really did the number on her and she's paying for it now. Though it saddens me, I can't disagree.

    On a happier note, mom's 60th birthday was yesterday. I had to open her present from me and dad for her, but she was surprised and happy about what we gave her. She'd been wanting this chandelier light fixture which is big and matches the light fixture in the entry way, for the living room to replace our weird acting fan. So dad and I went in together and got the light for her.

    Tomorrow's my nanny's 89th birthday and we're going to be celebrating it here at the house with everyone. Were going to order Extra Billy's barbeque and I'll be fixing macaroni and a vegetable platter. I'm not very good at this cooking thing, but I've been learning. Mom's been working really hard these past few weeks, when she's not in a hospital, and has been working on her new laptop to put a family cook book together. Last weekend, I actually got to do something I wanted to do for myself....I got to work in my garden, planted seeds and everything. It's supposed to rain here in VA the next couple of days, that means free water for my flowers.

    Well,
    Maryann, I'm so sorry you had to go off the Nexavar, but I could almost foresee it (the way mom had done so badly on it). That drug's a monster. Are things still going okay with the new drug your on? I'm glad to hear you can get out once and a while. Hope your family and you are doing okay. Let me know.

    Dawn, I'm sorry your father-in-law couldn't have surgery, but glad he's trying that trial you were talking about with Maryann. Mom's case was/is like your FIL's, it has spread to her lymphnodes in her abdomen by the time they had discovered it and done surgery. That's what shes suffering from right now. I worry though, about how the cancer is just left there to spread where ever it wants to. Please give your FIL my best wishes and hopes for his health.

    To both of you, I am very sorry for worrying you and hope to find you both in good will and health. Please respond, I promise to try to get back in the swing of regular posting with you two. I miss talking with you. (my own fault, I know) Talk with you later.

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