back after 3 months and have questions

Oneshot
Oneshot Member Posts: 153 Member
in Kidney Cancer #1

 Well , I'm back on here, after 3 months, to see if anyone can shed some light on what my wife might be in for. ANY informative feedback is greatly appreciated .

 The oncologists, after 2 different biopsies,  determined  she has stage 4  Papillary Renal Cell Carcinoma (nncRCC).
She has a small tumor on one kidney. With no mets to any other organs ,but all of her lymphnodes from her kidneys ,clear up to her throat show the cancer.

 They immediately said "clinical trials" .   Before even mentioning the stage 4.  The ,of coarse comes the "Time Stamp" 1 year.  ( My wife and I had been on this road before when I went through stage 3 pancreatic cancer  10 years earlier) .   She is still taking this news really bad. Based on what she saw me go through.   I try to explain to her every cancer and treatment(s) for them as well as each person can be totally different. Not to mention the outcomes.  But, we all know that, each of us handles that news each in our own way . But, the stress of all this is wearing on her. To be bluntly honest I can include myself in the last statement.    At least now she is opening up a little more.

 This is why I'm reaching out to hopefully get some positive perspectives or at least some honest opinions. 

 The clinical trial is stated as follows.
A single-arm,multicenter, Phase 2 trial to evaluate efficacy and safety of lenvatinib in combination with everolimus in sujects with unresectable advanced or matastic non clear cell renal carcinoma (nccRCC)  who have not received any chemotherapy for advanced disease.

 Anybody have ANY experiences with these drugs ( Together or separate)? The info we received about side effects and percentage rates of them don't look good.   But at this point. What option does a person have.

  She doesn't seem to have any side effects from the cancer itself at this time and is still working  (in a hot  production enviroment).Well, she does sleep alot. But she works nights in a non climate controlled production plant in Texas. That and long (and sometimes changing hours) could make anyone without cancer sleep whenever they could.


Baseline scans start 7-5-18.  Then we find out from there if we go foward or not.


Want to thank you ahead of time for any and all inputs

Take Care and GOD BLESS,
Oneshot

Comments

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #2
    Oneshot

    I just wanted to say how sorry I am that you are both going through this

    You both have had a lot to deal with and I can’t begin to imagine the pain  both of you must have to deal with

    sorry. I can’t find your first post

    and sorry I dont have experience of any treatments

    but if you can add some details from the pathology there will strong and good pepole who will be able to advice

     

    Annie

  • Dutch1
    Dutch1 Member Posts: 152
    #3
    My thoughts

    I also have stage 4 papillary RCC.  It got my kidney, one adrenal gland and 12 to 15 lymph nodes.  All of this was in the same area and could be removed via surgery.  I think that I am reading that your wife's cancer cannot be treated with surgery.  I am sorry that surgery isn't available for her.

    First, I am now out over 5 years from my initial surgery.  I have had two recurrences and have been treated with radiation, Sutent and Votrient.  In addition, I was in a test trial immedicately after surgery whereby I was on Everolimus for a year.  During that year, I was cancer free.  A few months after the trial stopped, the cancer showed up in my chest.  

    I wouldn't be too much help as to testifying whether the drugs your wife may be trying are going to be effective or what their side effects might be.  The drugs have different effects on different people and their cancers.  Effectiveness is difficult to predict and side effects are crazy as to whether or not they hit you.  I do know that the newer drugs that are out there offer considerable hope.  I do know that it is possible to beat the odds, as I have gone well past the survival period that my surgeon thought possible.  You've done so yourself with your own run in with cancer.

    In my opinion, you need a good oncologist -- one who you have confidence in and one who is going to help you to concentrate on the positive possibilities rather than the negatives that other medical people will tell you.  Oh, he/she needs to be good at the oncology trade.  Get an independent second opinion on your wfe's situation and then sit down and make the tough (but informed) decision.  

    You and your wife have my prayers and best well-wishes.  We all know how tough it is.  

     

    Dutch

  • Oneshot
    Oneshot Member Posts: 153 Member
    #4
    Dutch1 said:

    My thoughts

    I also have stage 4 papillary RCC.  It got my kidney, one adrenal gland and 12 to 15 lymph nodes.  All of this was in the same area and could be removed via surgery.  I think that I am reading that your wife's cancer cannot be treated with surgery.  I am sorry that surgery isn't available for her.

    First, I am now out over 5 years from my initial surgery.  I have had two recurrences and have been treated with radiation, Sutent and Votrient.  In addition, I was in a test trial immedicately after surgery whereby I was on Everolimus for a year.  During that year, I was cancer free.  A few months after the trial stopped, the cancer showed up in my chest.  

    I wouldn't be too much help as to testifying whether the drugs your wife may be trying are going to be effective or what their side effects might be.  The drugs have different effects on different people and their cancers.  Effectiveness is difficult to predict and side effects are crazy as to whether or not they hit you.  I do know that the newer drugs that are out there offer considerable hope.  I do know that it is possible to beat the odds, as I have gone well past the survival period that my surgeon thought possible.  You've done so yourself with your own run in with cancer.

    In my opinion, you need a good oncologist -- one who you have confidence in and one who is going to help you to concentrate on the positive possibilities rather than the negatives that other medical people will tell you.  Oh, he/she needs to be good at the oncology trade.  Get an independent second opinion on your wfe's situation and then sit down and make the tough (but informed) decision.  

    You and your wife have my prayers and best well-wishes.  We all know how tough it is.  

     

    Dutch

    Thanks

    Dutch,

    I appreciate the positive and honest input in your reply. 

    I have been trying my darndest to keep her positive. We are complete opposites. But, as we all know each person handles this in thier own way and time.  As far as side effects. I think thats what worries her the most. She watched me go through side effects that even caught my oncologist by surprise.  Like you mentioned "different for each person."  Again, like you mentioned "its possible to beat the odds"  . I've always told her since we met years back  "Odds are made to be broken". 

    We did get a second opinion. That was when the 2'nd oncologist agreed with clinical trials that the first oncologist had suggested. I am familiar with him  somewhat, due to he is a partner of my oncologist. So we do have a good trust factor there . I can't agree more with your advice

    on that !

    I have just been trying to get some feed back on what to look for or possibly expect with these drugs from folks, like yourself, who have had 1'st hand experiences. Knowing full well reactions can vary greatly with each person . Not to mention she will get a combination of the drugs.   We could all read possible side effects on just about any drug by reading the paperwork.  But, hearing both good and bad from the folks,like yourself, who had to deal with them . I feel will give me an advantage in helping her through all this. Guess it's the old adage(s) of "be prepared" or "know your enemy."

     Dutch, again, I thank you for you insight and honesty.  Also don't discount yourself about not being much help about the drugs she's going to be taking. Just what you had mentioned about Everolimus was a big help.

    Prayers and best wishes for you and yours

    Oneshot

     

  • Dutch1
    Dutch1 Member Posts: 152
    #5
    Everolimus

    Oneshot;

    The only drug you mention which I have experience with is Everolimus.  That was a long 4 to 5 years ago.  As I remember it now, my side effects with Everolimus weren't especially bad. I wouldn't fear going on this drug -- but be sure that your wife gets frequent follow up with her oncologist.  Especially in the early going, she needs to be watched carefully.  This is not news to you, given your own history with cancer treatment.

    Dutch

  • Oneshot
    Oneshot Member Posts: 153 Member
    #6
    Dutch,             I

    Dutch,
                I appreciate  you sharing your experience with Everolimus.   I'm praying she has minimal  negative side effects with her taking that and lenvatinib together.

     
      Thank you also, for the reminder about frequent follow ups.  Even though I have been in this rodeo before. This time, I'm not the one riding the bronc.  So any suggestions, ideas or examples, etc. I am thankful for.  No matter my previous knowledge or not.  During times like these, reminders on how to and such are greatly appreciated. No matter how well we try to prepare. We do forget details from time to time.  Even with notes!


    I might add. I shared some of the info. from your earlier post with my wife .  Long and short of it is.   It made her  have a more positive  frame of mind.  I Just wanted to let you know.  Your  post impacted her in a positive way.

     
      I know being positive without being in denial,  while battling cancer of any sort, can be a challange.    So Many THANKS to you !


    Take Cake and GOD BLESS,

    Oneshot

  • NewDay
    NewDay Member Posts: 272
    #7
    Trial experiences

    Hi Oneshot,

    I'm sorry to hear what you are both going through.  I strongly recommend that you join the SmartPatients.com website.  You will find other Papillary patients and a number of people who are in trials.  It used to be that they excluded most non-clear cell patients from trials but there are several coming up.

    As for prognosis, I was told 4 years ago that my type of RCC (unclassified) was very aggresive and I needed to be getting my affairs in order, that the availalbe drugs do not work on unclassified RCC.  I've been on Inlyta/Axitinib for 4 years and currently have no visible tumors.  There really is no way to predict how an individual is going to respond to a drug or which side effects they will experience.  It is different for everyone.

    I will pray for you both.

    Kathy

     

  • Oneshot
    Oneshot Member Posts: 153 Member
    #8
    NewDay said:

    Trial experiences

    Hi Oneshot,

    I'm sorry to hear what you are both going through.  I strongly recommend that you join the SmartPatients.com website.  You will find other Papillary patients and a number of people who are in trials.  It used to be that they excluded most non-clear cell patients from trials but there are several coming up.

    As for prognosis, I was told 4 years ago that my type of RCC (unclassified) was very aggresive and I needed to be getting my affairs in order, that the availalbe drugs do not work on unclassified RCC.  I've been on Inlyta/Axitinib for 4 years and currently have no visible tumors.  There really is no way to predict how an individual is going to respond to a drug or which side effects they will experience.  It is different for everyone.

    I will pray for you both.

    Kathy

     

    Kathy,

    Kathy,

               I'm so glad to hear you have no visible tumors!.  That is a BLESSING for sure!  Thank you for mentioning SmartPatients.com. I had seen it on other kidney cancer posts.  I'm guessing I had a case of tunnel vision and just flat forgot to go to that sight. I will make a point to check into it.  Also thank you for stating what you had been told. My wife , for obvious  reasons, hasn't been real positive due to being "time stamped" ( for lack of a better term) by the 1'st oncologist.. But, after sharing what Dutch had posted . She showed signs of wanting to fight back!   Which I was so glad to see!  I realize, each person's case is different . But, I like for her to realize. That no matter what the odds are against you. They are odds, not guarantees ! I say that knowing full well we all deal with news of this beast differently. But posts like yours and Dutch.  I do/will share with her.

    Thank you ever so much for your help & sharing your experience.

    Prayers to you  and yours,

    Oneshot

     

  • Oneshot
    Oneshot Member Posts: 153 Member
    #9
    NewDay said:

    Trial experiences

    Hi Oneshot,

    I'm sorry to hear what you are both going through.  I strongly recommend that you join the SmartPatients.com website.  You will find other Papillary patients and a number of people who are in trials.  It used to be that they excluded most non-clear cell patients from trials but there are several coming up.

    As for prognosis, I was told 4 years ago that my type of RCC (unclassified) was very aggresive and I needed to be getting my affairs in order, that the availalbe drugs do not work on unclassified RCC.  I've been on Inlyta/Axitinib for 4 years and currently have no visible tumors.  There really is no way to predict how an individual is going to respond to a drug or which side effects they will experience.  It is different for everyone.

    I will pray for you both.

    Kathy

     

    Many Thanks

    Just wanted to thank you for telling me about the SmartPatients.com site.

    Oneshot

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #10
    HI. I apologize I cannot

    HI. I apologize I cannot offer any good advice. I want to say that we are all here for you and your wife. I hope she gets the best treatment possible and that she can somehow relax and enjoy life one day at a time!

  • Oneshot
    Oneshot Member Posts: 153 Member
    #11
    AnnissaP said:

    HI. I apologize I cannot

    HI. I apologize I cannot offer any good advice. I want to say that we are all here for you and your wife. I hope she gets the best treatment possible and that she can somehow relax and enjoy life one day at a time!

    no need to apologize

    I've been on the Rare and other Cancer (pancreatic)  for a few years. I understand there are some things in life and even more so in cancer .That all the most well meaning and helpful people are at a loss for words or experiences.  So, no apology is needed.   Each person dealing with thier battle with cancer can be so different. Even the doctor's can be at a loss. But I have notice over the years on CSN there are many regulars on the site. Who have been a big help to many others who venture on to which ever boards they go to. Find people like yourself and others. Who post and reply to folks . By letting them know all sorts of good info. and also being a sounding board . While also letting them know they are not alone in thier battle. For that I say a big THANK YOU !  To each and every one of you!

    I might add she has started her trials and, so far no bad side effects. I did finally convince her to take leave from her 100 plus degree work. And that alone helped her out a ton! So, your hope that she gets to relax and enjoy life a day at a time. Has been answered! 

    Will try to give updates when I can.  

    Prayers and well wishes to all,

    Oneshot

     

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