Papillary Renal Cell Carcinoma- Anyone Experiencing This, Is A Survivor? PART 2 - STILL GOING STRONG

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Comments

  • sallyvel
    sallyvel Member Posts: 7
    Update on our situation
    Hi, just to let you know what has been going on in our lives. I have only posted a couple of times previously but have followed your stories for well over a month and am starting to feel that I know each of you a bit. All you stories inspire me and make me feel that we really have been fortunate in finding my husband's cancer early.
    We got a surprise call last Friday afternoon asking if we wanted the partial nephrectomy done on Monday. Of course that was great news and we still have no idea how it came about, but are thankful that we didn't have to wait until Oct./Nov as we had been told.
    We are both very glad that my husbands surgery is over and he came home Thursday. The tumour was larger that the cat scan report showed and therefore the partial nephrectomy turned into a total. The adrenal gland was left and most lymph node. The surgeon has assured us that he "got it all" but we really want to see the pathology report for confirmation. The tumour was 9-10 cm with no other involvement so I guess that makes it Stage 2. We have hoping that the grade is also a low number.
    The hospital stay was NOT uneventful. He had 4 episodes where his BP and O2 levels dropped and required the Race Team to intervene. However he managed to convince them to let him go home this morning (Thursday). I am sure that he told them some stories because he is still very shakey and lightheaded at time. I am afraid that he does not make a very good patient, but I am glad to have him back home and plan to take very good care of him. He is already walking much better and the peace and quiet is having a definite possitive effect. Hospitals are very noisey and he is having trouble shaking the anaethetic (spelling?)grogginess.
    It is a relief to have the tumour gone and to be able to get on with our lives.
    Take care everyone and thanks for the support.
    I will continue to follow this thread and keep each of you in my thoughts and prayers as you continue your fight against this disease.
    sallyvel
  • abestbarbara
    abestbarbara Member Posts: 18
    imbkuz said:

    Thanks for Part 2
    Carrie I know Dawn is absolutely right...your mom is definitely smiling down at you. She's surrounding you with angels. I've never had the honor to meet such a fine young lady. I don't know how old you are but you seem wise beyond your years. Your mom must be so proud of you as is the rest of your family. I'm beaming with pride and I've never met you ..just by your posts. I might have said this before that my son is having a difficult time dealing with his dads diagnosis...advanced renal cell carcinoma stage IV etc., etc. They're close. As a matter of fact they just came back from walking. Carrie I wish your spirit would rub off on him. I can't believe it's a month since your mom's passing. I'm so sorry. How was today for you and what have you been up to or not up to? Are you taking time for yourself?
    How are the people at work treating you. I guess my main concern is have people been there for you? Well here's a cyberspace hug!
    Dawn...we'll be watching for your posts. Does your husband realize how lucky he is to have a wife like you. What a wonderful daughter in law. You know how you hear about those nightmare in laws....that's probably what I'll end up with or as:)
    What meds is your fil taking? You did mention it but I'm a little tired to go back 89 posts:) Was it Torisel? Is he still married and how is your mil taking all this? Or is that why your husband is going to Ohio to be with him? How has he been feeling lately? I will definitely be praying for your family extra hard.
    My hubby goes this Thursday for blood work and urine testing. What should normally be a couple of hours ends up a very long day but the doctor is definitely worth the wait. It's just very draining realizing that you're "there." I crash when we come home. Then in two weeks after Thursday the big CT scan to see if tumors got bigger or shrunk. Last time they got bigger but that was before the Sutent so I pray it's doing it's job. I still have days where I can't believe it. It was all a mistake and that he's fine and will go back to work. There are times where I can't hold back and just start crying wherever I am. I know that I'm not supposed to cry in front of him and sometimes that's so hard to do.We have a long story but it would take forever.
    Well enough babbling for tonight.
    All my heart
    Babs

    Sutent
    I started sutent in Jan. Can you tell me about side effects? The diarrhea is almost unbearable.
  • Loretta58
    Loretta58 Member Posts: 6
    sallyvel said:

    Update on our situation
    Hi, just to let you know what has been going on in our lives. I have only posted a couple of times previously but have followed your stories for well over a month and am starting to feel that I know each of you a bit. All you stories inspire me and make me feel that we really have been fortunate in finding my husband's cancer early.
    We got a surprise call last Friday afternoon asking if we wanted the partial nephrectomy done on Monday. Of course that was great news and we still have no idea how it came about, but are thankful that we didn't have to wait until Oct./Nov as we had been told.
    We are both very glad that my husbands surgery is over and he came home Thursday. The tumour was larger that the cat scan report showed and therefore the partial nephrectomy turned into a total. The adrenal gland was left and most lymph node. The surgeon has assured us that he "got it all" but we really want to see the pathology report for confirmation. The tumour was 9-10 cm with no other involvement so I guess that makes it Stage 2. We have hoping that the grade is also a low number.
    The hospital stay was NOT uneventful. He had 4 episodes where his BP and O2 levels dropped and required the Race Team to intervene. However he managed to convince them to let him go home this morning (Thursday). I am sure that he told them some stories because he is still very shakey and lightheaded at time. I am afraid that he does not make a very good patient, but I am glad to have him back home and plan to take very good care of him. He is already walking much better and the peace and quiet is having a definite possitive effect. Hospitals are very noisey and he is having trouble shaking the anaethetic (spelling?)grogginess.
    It is a relief to have the tumour gone and to be able to get on with our lives.
    Take care everyone and thanks for the support.
    I will continue to follow this thread and keep each of you in my thoughts and prayers as you continue your fight against this disease.
    sallyvel

    Thanks for the "welcome"
    Thank you for your welcoming comments.

    Carrie, I know what you mean about thinking of the holidays. Mom always did the cooking. She didn't drive so we always did all the shopping and preparation together. It's going to feel all wrong this year. On a different note, we've been cleaning and remodeling Mom's apartment for our single 34 year old daughter (my husband and I own the 2 unit duplex). We've been laughing, crying, and at times cursing Mom and Dad for the things they saved. I understand the "Great Depression" mentality of saving everything, but some of the things they saved border on being psychotic! It's actually been kind of healing. We found an old shoehorn/bottle opener, what one has to do with the other I don't have a clue. There are 8 coffee makers - none of them work! And so on. - Just a note, the "cold" symptoms your having sound like my allergies!

    Sallyvel, Thank God your husband came through the surgery ok. I've been thinking about you both and praying you wouldn't have to wait. My experience with my Mom told me delays are not a good thing when dealing with this disease. Tell your husband not to rush the healing process. I will keep praying that all the reports come back clear. Also, take care of yourself while taking care of your husband.

    Sorry I have to cut this short. Will continue later. (My boss has a project for me.)
    'Bye for now and God bless you all.
  • ddt
    ddt Member Posts: 10
    bangormom said:

    Hi everyone,
    Thank you so

    Hi everyone,

    Thank you so much for all your kind words and prayers. Dawn, your phone calls are a blessing, we did not reconize your cell #, thats why we didn't answer,(bill collectors wont stop calling) you are not a pest, I love hearing from you all in any form.

    What I need is all the prayers you all can give, miricals still happen, tho I'm losing some of my faith. It's hard to hang on to when things just keep going down hill. I try to stay possitive but it does get hard. One thing that is getting on my nerves is everyone telling to eat, I'm down to 89lbs I know I need to eat, and I try. When I'm real sick I tend not to eat I'm sure you all know what thats like. I'm doing the milk shakes made with boost lots of cals there! Small meals, candy, whatever I feel like eating, but I think I'll go off the deep end if I hear "you have to force yourself." I hear that so many times it makes me want pull whats left of my hair out by the roots! I know they all mean well but one has been droping off diners just for me 3x's a day, last night I ate a small serving of mac n cheeze, she insisted I eat the burger and fries while she was here, I had to keep reminding her that I had eaten what I was able to and all I wanted to do was go to sleep, I didn't want to hurt her feelings but if I can't eat then I can't.
    It makes me feel like a meanie, but she shudn't waste her money on food I am not able to eat, so I let the kids split it. I just hope she doesn't find out, she'll be angery with me. Oh well that's enough about the eating thing.

    Notice I haven't mentioned hospice yet? Well here we go, the hospice nurse comes on monday to talk about the benifits that it offers. I have heard that I will know when it's time, and I am hoping that is true. I feel pretty good right now, it's the when the next bomb will go off that really bothers me. I just know right now I don't want to die, I'm just not ready yet. My oldest daughter has so much on her plate emotionaly that I can't go right now, it turns out my exhusband is in the same room at the hospital I was, it turns out that his luekemia is back at stage 4, so being 22 with 2 parents with a terminal illness, I don't know how she even gets out of bed in the morning. So see, I have 'stuff' to do.

    Well time to force feed myself again. I really just want you all to know that I am greatful to all of you keep praying please.

    Maryann

    Another PRCC post
    My husband was diagnosed with Stage IV PRCC December 2008. It was found in his lymph nodes. His cancer is now in his abdomen and he now has the ascites (fluid) in his abdoman that they are draining weekly. He was taking Torisel but it didn't work so we have applied to take Nexavar. I was sorry to hear that Maryann wasn't getting any results with the Afinitor. We are in our late 50s. There was a gentleman in his 70s getting Torisel when my husband was. His cancer had spread to his abdomen as well and the Torisel has been working for him now for a year and a half. So fortunately these drugs are working for some. My husband has been very ill the past three days but prior to that was fine other than a cough and some stomach discomfort. This is so scary! His doctor told us he wouldn't have but a few months unless we could find a drug to work. Maryann, I just lost my best friend to breast cancer a couple of months ago. She was ten years younger than me and had had it for 15+ years. Her daughters are 22 and 25 (in that range). I know she was so worried about them like you are. They called her a million times a day and always seemed sooo needy. Low and behold, they are holding up really well. I know they can't even imagine their loss yet but if it can be of any comfort to you, no one, least of all my friend, would have ever thought they would pull it together the way they have. I am praying for you. You are so brave.
    Darla
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    Any Advice for High BP?
    Hello everyone,

    I haven't posted in awhile. I have been crazy busy with my kids and my fil has been doing pretty well on the Sutent for now. The one thing that we can't seem to get under control is his blood pressure. It is too high while he is on the Sutent. He already had high BP even before taking the Sutent so I'm sure that is a factor. Anyway, his doctor has warned us that if we can't get this BP down, then they will have to take him off the Sutent. We don't want that because the Sutent has shrunk his tumors big time. So anyone else have BP problems? Anyone find a medication or other treatment that helped?

    Maryann, don't know if you are out there or not, but I hope you are feeling good and taking care of yourself. I miss you more than you can realize. I am praying that you are comfortable and feeling good.

    Donna-Lee I hope you are doing good too. What have you been up to lately?

    Carrie, how are you doing? I know we have been emailing some, but I always love to hear about what is going on with you too. Have you seen any good movies lately?

    Babs--how is your husband doing on the Nexcavar? How is your son feeling?

    Others out there--hello to you too. I hope this message finds all of you feeling good.

    Have a great weekend everyone.
    Dawn
  • imbkuz
    imbkuz Member Posts: 52

    Any Advice for High BP?
    Hello everyone,

    I haven't posted in awhile. I have been crazy busy with my kids and my fil has been doing pretty well on the Sutent for now. The one thing that we can't seem to get under control is his blood pressure. It is too high while he is on the Sutent. He already had high BP even before taking the Sutent so I'm sure that is a factor. Anyway, his doctor has warned us that if we can't get this BP down, then they will have to take him off the Sutent. We don't want that because the Sutent has shrunk his tumors big time. So anyone else have BP problems? Anyone find a medication or other treatment that helped?

    Maryann, don't know if you are out there or not, but I hope you are feeling good and taking care of yourself. I miss you more than you can realize. I am praying that you are comfortable and feeling good.

    Donna-Lee I hope you are doing good too. What have you been up to lately?

    Carrie, how are you doing? I know we have been emailing some, but I always love to hear about what is going on with you too. Have you seen any good movies lately?

    Babs--how is your husband doing on the Nexcavar? How is your son feeling?

    Others out there--hello to you too. I hope this message finds all of you feeling good.

    Have a great weekend everyone.
    Dawn

    Dawn don't ask me why I just
    Dawn don't ask me why I just happened to glance at site (it's been awhile)God's intervention?....Anyways Maryann had hooked me up to www.kidneycancer.org. Lots of people on there taking Sutent (among other drugs and issues) and they may have a suggestion. Weekends sometimes are slow on the site but I would give it a shot. There are alot of great people on the site too.
    Catch up later going out the door.
    regards
    Babs
  • donna_lee
    donna_lee Member Posts: 1,041 Member
    imbkuz said:

    Dawn don't ask me why I just
    Dawn don't ask me why I just happened to glance at site (it's been awhile)God's intervention?....Anyways Maryann had hooked me up to www.kidneycancer.org. Lots of people on there taking Sutent (among other drugs and issues) and they may have a suggestion. Weekends sometimes are slow on the site but I would give it a shot. There are alot of great people on the site too.
    Catch up later going out the door.
    regards
    Babs

    Yucky summer cold
    I've been battling this thing for over a week now. I first thought I'd stirred up allergy problems, since I was pressure washing the green stuff off the decks and patios. Also cleaned out the garden tool shed and came across lots of dust and a couple of mouse and/or squirrel nests. It went bacterial, so I've been antibiotics for 9 days; but the post nasal drip makes me cough really hard, so I've been staying away from family, grands, and others.

    My dil had her post pregnancy and c-section muscle tears repaired 2 weeks ago. One layer had a 4" separation. She definitely didn't need this cough. My son brought the girls out to pick ripe blueberries. They each got a coffee cup full, which made them happy.

    Last week we got the news that my son-in-law has his Immigration Visa stamp. He'll be arriving in Portland on the 12th, so the rest of the family is happy!!!!

    Between this cold and working long days, I haven't been on the i-net much. Best to all.
    Donna
  • imbkuz
    imbkuz Member Posts: 52
    donna_lee said:

    Yucky summer cold
    I've been battling this thing for over a week now. I first thought I'd stirred up allergy problems, since I was pressure washing the green stuff off the decks and patios. Also cleaned out the garden tool shed and came across lots of dust and a couple of mouse and/or squirrel nests. It went bacterial, so I've been antibiotics for 9 days; but the post nasal drip makes me cough really hard, so I've been staying away from family, grands, and others.

    My dil had her post pregnancy and c-section muscle tears repaired 2 weeks ago. One layer had a 4" separation. She definitely didn't need this cough. My son brought the girls out to pick ripe blueberries. They each got a coffee cup full, which made them happy.

    Last week we got the news that my son-in-law has his Immigration Visa stamp. He'll be arriving in Portland on the 12th, so the rest of the family is happy!!!!

    Between this cold and working long days, I haven't been on the i-net much. Best to all.
    Donna

    Donna lee
    Wow Donna. No one would ever believe that you have been through so much cuz look at you now. Powerwashing, etc. I'm sorry about the cold though .Please take good care. Sorry about your dil but glad to hear the good news about your sil. Are you taking any meds for the RCC now. I forgot off hand and am actually too lazy to go through 100+ posts:)Donna lee you're an amazing lady. You give me hope but right now my hubby who was so big and very very strong can't seem to do too much. As the days go by, he seems to get less and less energetic. I'm hoping it's the meds.(Nexavar) He really seems to be pushing to get his walks in.Well you take good care and get rid of that cold:)
    Babs
  • sallyvel
    sallyvel Member Posts: 7
    We have the pathology report- sort of!
    We got the pathology report today over the phone. It seems that the surgeon is leaving in the next couple of days for his new post in Calgary and couldn't do our 2 week follow up appointment which should have been done by now (and may not happen until Sept sometime when the new specialist arrives). The surgeon did return our call with the report. We have found out that my husband's tumour was 7.5cm, stage II, grade 3, papillary RCC and all margins were negative. I am not sure now whether he said that it was papillary type 2 or if he was referring to the stage. He seemed quite happy that this was good news saying that papillary had the best prognosis. However from what I have read today on the internet it seems that type I has the best prognosis and that type 2's is much worse for recurrence and 5 year survival rates. The grade makes me think that it is type 2, but we will have to find out for sure. Any thoughts about this??
    I asked him to send a copy to our GP who has been excellent through all this and I can get a copy from him when my husband sees him Aug 21.
    I understand that there is only a small % of RCC that is this type which makes it harder to get information and treatment in some cases.
    I am hoping that you are all doing reasonably well. I too miss Maryann's input in this thread. You are all so supportive of each other.
    Thanks for listening!
    sallyvel
  • AlwaysHaveHope
    AlwaysHaveHope Member Posts: 29
    sallyvel said:

    We have the pathology report- sort of!
    We got the pathology report today over the phone. It seems that the surgeon is leaving in the next couple of days for his new post in Calgary and couldn't do our 2 week follow up appointment which should have been done by now (and may not happen until Sept sometime when the new specialist arrives). The surgeon did return our call with the report. We have found out that my husband's tumour was 7.5cm, stage II, grade 3, papillary RCC and all margins were negative. I am not sure now whether he said that it was papillary type 2 or if he was referring to the stage. He seemed quite happy that this was good news saying that papillary had the best prognosis. However from what I have read today on the internet it seems that type I has the best prognosis and that type 2's is much worse for recurrence and 5 year survival rates. The grade makes me think that it is type 2, but we will have to find out for sure. Any thoughts about this??
    I asked him to send a copy to our GP who has been excellent through all this and I can get a copy from him when my husband sees him Aug 21.
    I understand that there is only a small % of RCC that is this type which makes it harder to get information and treatment in some cases.
    I am hoping that you are all doing reasonably well. I too miss Maryann's input in this thread. You are all so supportive of each other.
    Thanks for listening!
    sallyvel

    Hi everyone,Haven't posted
    Hi everyone,
    Haven't posted in quite a few days. What have I been up to? This past weekend I spent both Saturday and Sunday dusting the living room, vacuuming, and mopping the kitchen floor, oh..and washing clothes of course. I decided to skip getting groceries so I could have the time to actually do the dusting. That was a bad idea, because I ended up at the Walmart after work on Monday, grocery shopping for two hours. Never again on a week night. I'm taking this Friday off. I was supposed to be going to see a movie with my future-brother-in-law's brother this Friday, but instead we decided it would be better to go Saturday. That's okay, though, because taking Friday off anyway is going to allow me to get some need to do things done around here. I'm excited about Saturday though.

    Well, how's everyone doing?

    Maryann, I haven't heard back from you and am missing you a lot. I hope you are doing okay. I'm sending you good thoughts and prayers and wishing you well.

    Babs, how are you doing? Haven't heard from you in a few days. Hope all is well. Is your son doing okay. How about the hubby? It's amazing with such low energy that he is still able to get up and walk. Yes, meds will do it to you, but I think the cancer has it's role in causing the low energy, too.

    Loretta58, How are you? How's that cleaning up the apartment thing going?

    Donna, you sound like me...busy. I don't know how you do it. Just remember to take care of yourself, while you're out there powerwashing and whatever else. I'm sorry you've got a cold...I know what it's like...hopefully I didn't send you the cold I had through cyberspace =-). That was a bad one...Do you feel like your heads going to explode or your throat's miserable?

    Dawn, I'm glad to hear from you. I just haven't emailed a lot this week. I've been coming home from work, making dinner, washing dishes, and running upstairs afterwards to watch a movie or t.v. This is really the first day since I've last talked to you that I've actually been on this computer to see what's going on. I'm sorry to hear that your fil's blood pressure is so high. I think mom had that problem sometimes, but she mainly had a problem with it getting too low, because they had her on blood pressure meds that she really no longer needed because of the dramatic weight loss/not eating thing, because she had been taking meds for high bp for years, before the cancer. So, I can't really suggest anything about lowering his bp, but what about bp meds. Can they put him on any for the periods of time while he's taking the treatment meds?

    Sallyvel, I'm sorry your hubby's cancer is papillary. Unfortunately, it's a harder type of rcc to treat, but as you can read, people are having successes out there with treatment. Don't worry too much about it being stage 2; mom's was stage 4 when they caught it. You're lucky in a way, because they've caught it in one of the beginning stages. I'm sorry that you'll haven't gotten a chance to see someone for followup yet. That must have you'll somewhat anxious/nervous. Is your husband doing okay with pain and everything so far? I hope he is handling it okay. Just remember to take each day as it comes. Please keep us updated on how you and he are doing.

    Well, its been a long day. I'll talk with you all again in a few days.

    Carrie
  • ruthelizabeth
    ruthelizabeth Member Posts: 138

    Hi everyone,Haven't posted
    Hi everyone,
    Haven't posted in quite a few days. What have I been up to? This past weekend I spent both Saturday and Sunday dusting the living room, vacuuming, and mopping the kitchen floor, oh..and washing clothes of course. I decided to skip getting groceries so I could have the time to actually do the dusting. That was a bad idea, because I ended up at the Walmart after work on Monday, grocery shopping for two hours. Never again on a week night. I'm taking this Friday off. I was supposed to be going to see a movie with my future-brother-in-law's brother this Friday, but instead we decided it would be better to go Saturday. That's okay, though, because taking Friday off anyway is going to allow me to get some need to do things done around here. I'm excited about Saturday though.

    Well, how's everyone doing?

    Maryann, I haven't heard back from you and am missing you a lot. I hope you are doing okay. I'm sending you good thoughts and prayers and wishing you well.

    Babs, how are you doing? Haven't heard from you in a few days. Hope all is well. Is your son doing okay. How about the hubby? It's amazing with such low energy that he is still able to get up and walk. Yes, meds will do it to you, but I think the cancer has it's role in causing the low energy, too.

    Loretta58, How are you? How's that cleaning up the apartment thing going?

    Donna, you sound like me...busy. I don't know how you do it. Just remember to take care of yourself, while you're out there powerwashing and whatever else. I'm sorry you've got a cold...I know what it's like...hopefully I didn't send you the cold I had through cyberspace =-). That was a bad one...Do you feel like your heads going to explode or your throat's miserable?

    Dawn, I'm glad to hear from you. I just haven't emailed a lot this week. I've been coming home from work, making dinner, washing dishes, and running upstairs afterwards to watch a movie or t.v. This is really the first day since I've last talked to you that I've actually been on this computer to see what's going on. I'm sorry to hear that your fil's blood pressure is so high. I think mom had that problem sometimes, but she mainly had a problem with it getting too low, because they had her on blood pressure meds that she really no longer needed because of the dramatic weight loss/not eating thing, because she had been taking meds for high bp for years, before the cancer. So, I can't really suggest anything about lowering his bp, but what about bp meds. Can they put him on any for the periods of time while he's taking the treatment meds?

    Sallyvel, I'm sorry your hubby's cancer is papillary. Unfortunately, it's a harder type of rcc to treat, but as you can read, people are having successes out there with treatment. Don't worry too much about it being stage 2; mom's was stage 4 when they caught it. You're lucky in a way, because they've caught it in one of the beginning stages. I'm sorry that you'll haven't gotten a chance to see someone for followup yet. That must have you'll somewhat anxious/nervous. Is your husband doing okay with pain and everything so far? I hope he is handling it okay. Just remember to take each day as it comes. Please keep us updated on how you and he are doing.

    Well, its been a long day. I'll talk with you all again in a few days.

    Carrie

    Hi! I've just been skimming
    Hi! I've just been skimming thru and thought I'd add a note. My husband is on Afinitor; it's his fourth week. Had his right kidney removed three years ago. A year later they began testing to see if they could find a nodule in his lungs that was big enough to biopsy. A year of tests later they found it in his lungs and the lymph nodes in his chest. He started on Sutent. At that point we discovered that our oncologist was ummmmmmmm someone we needed to run away from. (Anytime you make an emergency night call to a dr., get a 4-word answer and are disconnected from and can't reach again, you realize you've got a problem. When the dr. can't remember the incident four days later, you run out the door.) We're with a good man now, connected to the Moffett Institute, very good with patients and meds.

    Sutent gave us lots of side effects and wasn't effective. Torisel seemed to do a good job; we heard that it had cut his cancer back 50% in late April after 4 months on it. However, it's come roaring back. Lumps everywhere. Somehow actually seeing them is scary.

    Tolerating the Afinitor fairly well so far. Is now on Atavan because he's started to have trouble sleeping. Losing weight.

    He has a good attitude. Very positive and tries always to see things in the best light. Still keeps very busy. Has begun having a lot of chest congestion and coughing up stuff, but we had that at the last with the Torisel.

    I am trying to be positive, too, and I can be when I'm with him. Dr. scared me a little the one minute I saw him alone, but this med may work. I am trying to deal with his kids and their attitudes; my stepmother club has come into play lately.

    Ruth
  • sallyvel
    sallyvel Member Posts: 7

    Hi! I've just been skimming
    Hi! I've just been skimming thru and thought I'd add a note. My husband is on Afinitor; it's his fourth week. Had his right kidney removed three years ago. A year later they began testing to see if they could find a nodule in his lungs that was big enough to biopsy. A year of tests later they found it in his lungs and the lymph nodes in his chest. He started on Sutent. At that point we discovered that our oncologist was ummmmmmmm someone we needed to run away from. (Anytime you make an emergency night call to a dr., get a 4-word answer and are disconnected from and can't reach again, you realize you've got a problem. When the dr. can't remember the incident four days later, you run out the door.) We're with a good man now, connected to the Moffett Institute, very good with patients and meds.

    Sutent gave us lots of side effects and wasn't effective. Torisel seemed to do a good job; we heard that it had cut his cancer back 50% in late April after 4 months on it. However, it's come roaring back. Lumps everywhere. Somehow actually seeing them is scary.

    Tolerating the Afinitor fairly well so far. Is now on Atavan because he's started to have trouble sleeping. Losing weight.

    He has a good attitude. Very positive and tries always to see things in the best light. Still keeps very busy. Has begun having a lot of chest congestion and coughing up stuff, but we had that at the last with the Torisel.

    I am trying to be positive, too, and I can be when I'm with him. Dr. scared me a little the one minute I saw him alone, but this med may work. I am trying to deal with his kids and their attitudes; my stepmother club has come into play lately.

    Ruth

    Hi Ruth
    Welcome to the thread. Does your husband have papillary RCC? If so what stage, grade etc. was he on diagnosis? We are just starting out on the journey and looking for as much info (at least I am, my husband who has prcc stage 2, grade 3, uncertain of type doesn't seem to want to know as much). It is great that your husband remains positive and that you have switched doctors to one that cares. We have to see a new one probably in early Sept. for my husbands post-op laparoscopic right nephrectomy. Hopefully he will be good. We need more info about cell type and what to expect in the future. He surgeon who did the surgery assured us that he "got it all" and he has the best prognosis of all renal cell carcinomas. Being a grade 3 I am not sure that I entirely agree and if he turns out to be prcc2 then I really think he is off the mark from all that I have read. I try to be real positive for my husband and haven't really discussed any of my concerns to him yet.
    I sincerely hope that the afinator works well for you.
    sallyvel
  • dawnmomofthree
    dawnmomofthree Member Posts: 39
    sallyvel said:

    Hi Ruth
    Welcome to the thread. Does your husband have papillary RCC? If so what stage, grade etc. was he on diagnosis? We are just starting out on the journey and looking for as much info (at least I am, my husband who has prcc stage 2, grade 3, uncertain of type doesn't seem to want to know as much). It is great that your husband remains positive and that you have switched doctors to one that cares. We have to see a new one probably in early Sept. for my husbands post-op laparoscopic right nephrectomy. Hopefully he will be good. We need more info about cell type and what to expect in the future. He surgeon who did the surgery assured us that he "got it all" and he has the best prognosis of all renal cell carcinomas. Being a grade 3 I am not sure that I entirely agree and if he turns out to be prcc2 then I really think he is off the mark from all that I have read. I try to be real positive for my husband and haven't really discussed any of my concerns to him yet.
    I sincerely hope that the afinator works well for you.
    sallyvel

    Sad News
    Hello Everyone,

    I wish I had better news to report. I received an email this morning from Maryann's daughter Kat. Maryann passed away the morning of Aug. 20. She was not in any pain and went peacefully. Kat asked me to let everyone know. Many of us have lost a dear friend and there will certainly be a big hole in my life now. I miss her so much already.

    Hugs to all,
    Dawn
  • sallyvel
    sallyvel Member Posts: 7
    So Sad to hear this!
    I never even emailed directly to Maryann but I feel that I knew her from reading all the posts of this thread. I am so sorry too learn that she lost her battle with this disease. She was a real inspiration to me as my husband and I grasped the meaning of "you have a kidney toumor". Our hearts go out to Maryann's family.
    Sallyvel
  • imbkuz
    imbkuz Member Posts: 52
    sallyvel said:

    So Sad to hear this!
    I never even emailed directly to Maryann but I feel that I knew her from reading all the posts of this thread. I am so sorry too learn that she lost her battle with this disease. She was a real inspiration to me as my husband and I grasped the meaning of "you have a kidney toumor". Our hearts go out to Maryann's family.
    Sallyvel

    Maryann
    I can't even write much except that there is a big hole in my heart. She was the first person to give me guidance and advice in my new journey. She was just amazing and just so helpful to me. What a lady!!! She will be sorely missed. I'm too upset to write anymore.My prayers are with her family.
    Babs
  • imbkuz
    imbkuz Member Posts: 52
    sallyvel said:

    So Sad to hear this!
    I never even emailed directly to Maryann but I feel that I knew her from reading all the posts of this thread. I am so sorry too learn that she lost her battle with this disease. She was a real inspiration to me as my husband and I grasped the meaning of "you have a kidney toumor". Our hearts go out to Maryann's family.
    Sallyvel

    Maryann
    I can't even write much except that there is a big hole in my heart. She was the first person to give me guidance and advice in my new journey. She was just amazing and just so helpful to me. What a lady!!! She will be sorely missed. I'm too upset to write anymore.My prayers are with her family.
    Babs
  • donna_lee
    donna_lee Member Posts: 1,041 Member
    imbkuz said:

    Maryann
    I can't even write much except that there is a big hole in my heart. She was the first person to give me guidance and advice in my new journey. She was just amazing and just so helpful to me. What a lady!!! She will be sorely missed. I'm too upset to write anymore.My prayers are with her family.
    Babs

    Sorry about the news
    To all in this group -my regrets to hear of Maryann. She was a real trouper and offered so much information and encouragement to all. For anyone who is in direct contact with the family, please pass along my condolences.

    On a lighter note, my s-i-l arrived in the states on 8/12 and he, my daughter and the boys came down to visit this weekend. It was great to see them, and know that he can stay here. We had a BBQ with them and son and his family on Saturday night. With all the allergies, there was lots of fresh, farmers' market produce we cooked to go with the steaks and chicken. Everyone has departed so it has quieted down. I'm glad the cleaning lady arrives tomorrow...but I had to pick up stuff so she could find the floor to vacuum. Lots of laughs and visiting

    Regards to all, Donna_Lee
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    donna_lee said:

    Sorry about the news
    To all in this group -my regrets to hear of Maryann. She was a real trouper and offered so much information and encouragement to all. For anyone who is in direct contact with the family, please pass along my condolences.

    On a lighter note, my s-i-l arrived in the states on 8/12 and he, my daughter and the boys came down to visit this weekend. It was great to see them, and know that he can stay here. We had a BBQ with them and son and his family on Saturday night. With all the allergies, there was lots of fresh, farmers' market produce we cooked to go with the steaks and chicken. Everyone has departed so it has quieted down. I'm glad the cleaning lady arrives tomorrow...but I had to pick up stuff so she could find the floor to vacuum. Lots of laughs and visiting

    Regards to all, Donna_Lee

    Well, after the scare of
    Well, after the scare of blood in the urine, the dr's appt. this morning was fairly good. I mean DOn has gained a couple of pounds (you can still see his ribs reallllllly well, but the scale says he's up). The blood work is all good. The only problem is that none of the lumps have gone down and he keeps getting them.

    On the up side the dr. isn't going to schedule any cat scans because, as he said, if we see the lumps going down, we'll know the drug is working.

    Don has papillary renal cell cancer, stage 4.

    The dr. is going to keep him on Afinitor for at least another three months, possibly more. He's hoping that if it doesn't work, Avastin will be approved so Don could go on that.

    Ruth
  • ruthelizabeth
    ruthelizabeth Member Posts: 138

    Well, after the scare of
    Well, after the scare of blood in the urine, the dr's appt. this morning was fairly good. I mean DOn has gained a couple of pounds (you can still see his ribs reallllllly well, but the scale says he's up). The blood work is all good. The only problem is that none of the lumps have gone down and he keeps getting them.

    On the up side the dr. isn't going to schedule any cat scans because, as he said, if we see the lumps going down, we'll know the drug is working.

    Don has papillary renal cell cancer, stage 4.

    The dr. is going to keep him on Afinitor for at least another three months, possibly more. He's hoping that if it doesn't work, Avastin will be approved so Don could go on that.

    Ruth

    and now....
    Seems Don has a mix of some clear cell with papillary RCC. The dr. is going to try Afinitor for one more month (total of three months then). At that point unless the Afinitor suddenly takes hold, he will either go to Avastin with Interferon or consult a specialist at the Moffitt Institute in Tampa.
  • ddt
    ddt Member Posts: 10

    and now....
    Seems Don has a mix of some clear cell with papillary RCC. The dr. is going to try Afinitor for one more month (total of three months then). At that point unless the Afinitor suddenly takes hold, he will either go to Avastin with Interferon or consult a specialist at the Moffitt Institute in Tampa.

    Papillary RCC
    Ruth, my husband's name is Don also and he has papillary with clear cell. He was diagnosed stage IV in December 2008 and it was in his lymph nodes. He tried Torisel which didn't work but has been working very well for a year and a half for a man with papillary where he went to receive the chemo. Don had ascites really bad. Was having about four to five liters a week removed. This is a very bad prognosis. He just started Nexavar a couple of weeks ago and the ascites has reduced unbelievably. The doctor had given him months unless we could get a chemo to work. This has given us hope which is what everyone needs. There is a clinical trial that is working really well for papillary patients. You can't have taken but one drug previously so my husband was not a candidate. You have to also have evidence that the disease has spread. Maryann tried to get into the trial also and was not able to because she had taken more than one chemo. It breaks my heart that she didn't survive long enough for that drug to be marketed. Two years ago there was no hope for these patients and now it's exploding. If we can just keep them alive long enough there are new drugs on the scene every six months it seems like. Afinitor is very similar to Torisel so we didn't try it since the Torisel didn't work. Avastin and Interferon are terribly harsh. I would get a second opinion. I just checked and the trial for XL880 or GSK1363089 as it is now called is closed but I had contacted a Dr. Logan in Indiana about the trial and really liked their approach. I didn't think the Nexavar would work because it seems more for clear cell so we are very excited to think that it is helping this much this soon.