News I didn't want to hear
Well, I am just back from the oncologist after undergoing scan last week and the news is not good. After being on Votrient for a little under 3 months there are new metastatic sites - 9 lesions on my pancreas and 2 on my spleen. I am shell shocked to say the least. I have not yet told anybody the bad news. Off Votrient in preparation of commencing trial which starts early December. I will post further details when known.
I am not looking forward to sharing this news with my daughter who has just commenced her last (and most important) year of high school. she has already lost her Dad to melanoma 2 1/2 years ago.
Thanks for "listening" I just needed to share with CSN friends before my daughter, mother and other family members and friends.
Sue
Comments
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I am so sorry Sue to hearGalrim said:So sorry Sue to read this :-(
I hope you are able to keep the hopes high even in times like this, though I know its not easy. There are still a lot of options to be tried out, I hope you can find just a little comfort in that and hang in there...
/G
I am so sorry Sue to hear this. It sounds like you have had a rough go of things. I have read so many good stories that have come out of the bad ones. I am sure they will find the right treatment for you.
Saying a prayer!
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A little rain must fallJojo61 said:I am so sorry Sue to hear
I am so sorry Sue to hear this. It sounds like you have had a rough go of things. I have read so many good stories that have come out of the bad ones. I am sure they will find the right treatment for you.
Saying a prayer!
Best of luck with the trial drug. Which is it? I know that it stinks to hear of new mets. I've been doing it for 2 years. So we push on, change drugs and start over. Stay encouraged that options remain. Everybody is concerned and pulling for you. We do this together.
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It's Always a Shock...
No matter how you prepare yourself, being told of new cancer is always shocking. The pit in your stomach has no bottom. I'm pretty sure that most everyone on this board has gone through multiple therapys and drugs on their path to today. Each new drug is a source of hope and each lack of response brings new anxiety. The reason you were put on Votrient is because it has been shown to help some people but this time not you. I know I've been through IL2 therapy and two other drugs before Inlyta slowed my mets. The very fact that you did not respond to Votrient the way you had hoped may very well give you access to new therapys in the pipeline that offer even more promise. We are honored that you came to this group with your pain. We have all lived the fear of our disease and yet we are still here...and so are you! We take no prisoners in our battle with cancer but always remember...you still have to watch for that darn bus when you cross the street!
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Sue, you must be so scared
Sue, you must be so scared right now but that's okay. It's normal. You'll get your sea legs back as soon as you move forward. Theat ARE lots of options. You're just beginning down that road. My heart breaks for your daughter.Do you have to tell her the news just yet? I know that's a very personal decision, and having had to deal with the loss of her dad she may be vehement about wanting to stay in the information loop, no matter the news. But I would be inclined to hold off telling her until you haVe fully processed the news yourself, and gotten your head and your heart around it, so you don't inadvertently project your fears onto her. If she sees you fully in control of the situation she is more apt to be reassured. This RCC business is a wild ride. There are so many stories here of ups and downs and ups again. the thing is, you just don't know what's going to happen next. You're a soldier now. I often think of young soldiers going into to battle and wonder how they get the courage to do it. How do they nonchalantly face those odds, day in & day out? As my brother - who introduced me to the analogy - pointed out, they are well trained and they trust the training and the system they are in. Like us - we are in the hands of RCC experts and we are doing all the right things, the things we know we need to do! And we're armed with the world's cutting edge drugs. Stay strong and keep those rose-colored glasses on! I'm a big believer in rose-colored glasses.
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Good Morning, Sue!Gordon Charles said:It's Always a Shock...
No matter how you prepare yourself, being told of new cancer is always shocking. The pit in your stomach has no bottom. I'm pretty sure that most everyone on this board has gone through multiple therapys and drugs on their path to today. Each new drug is a source of hope and each lack of response brings new anxiety. The reason you were put on Votrient is because it has been shown to help some people but this time not you. I know I've been through IL2 therapy and two other drugs before Inlyta slowed my mets. The very fact that you did not respond to Votrient the way you had hoped may very well give you access to new therapys in the pipeline that offer even more promise. We are honored that you came to this group with your pain. We have all lived the fear of our disease and yet we are still here...and so are you! We take no prisoners in our battle with cancer but always remember...you still have to watch for that darn bus when you cross the street!
PleaseGood Morning, Sue!
Please know that you are in our thoughts and prayers. I think every time you get this kind of news you go into the same shock and fear mode that you experienced when you were first diagnosed. Allow yourself a little time to wrestle with the emotions, then pick yourself up and get ready to fight again!! The new things coming down the pike and the trials are reason for hope. ~Sharon
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Prayers and all the goodI am alive said:Sue, you must be so scared
Sue, you must be so scared right now but that's okay. It's normal. You'll get your sea legs back as soon as you move forward. Theat ARE lots of options. You're just beginning down that road. My heart breaks for your daughter.Do you have to tell her the news just yet? I know that's a very personal decision, and having had to deal with the loss of her dad she may be vehement about wanting to stay in the information loop, no matter the news. But I would be inclined to hold off telling her until you haVe fully processed the news yourself, and gotten your head and your heart around it, so you don't inadvertently project your fears onto her. If she sees you fully in control of the situation she is more apt to be reassured. This RCC business is a wild ride. There are so many stories here of ups and downs and ups again. the thing is, you just don't know what's going to happen next. You're a soldier now. I often think of young soldiers going into to battle and wonder how they get the courage to do it. How do they nonchalantly face those odds, day in & day out? As my brother - who introduced me to the analogy - pointed out, they are well trained and they trust the training and the system they are in. Like us - we are in the hands of RCC experts and we are doing all the right things, the things we know we need to do! And we're armed with the world's cutting edge drugs. Stay strong and keep those rose-colored glasses on! I'm a big believer in rose-colored glasses.
Prayers and all the good thoughts Ive got in me are going out to you. And listen to the above people! There are new drugs coming out for RCC and one of them WILL work for you! Hugs to you.
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lifting you in prayer
So sorry to hear this news, Sue! I think this will be just a bit of a setback but you will get thru it and you will continue to survive!! I know you must be so scared but, we are all pulling for you and praying for you and your family.
Stay strong!!
Sindy
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Dear Sue, so sorry to hear
Dear Sue, so sorry to hear that the Votrient did not help! I know you have been through ALOT! Losing your husband and your father to cancer on the same day in 2011, two weeks later learning you have cancer, your dog having cancer, where does it end? Life just doesn't seem fair! But now, here we are two years later. You are still here fighting RCC. The Nexavar worked for some time, didn't it? You were on a trial, but do you know for sure you were getting the drug? It held you stable for a while then. They will maybe put you on Nivolumab hopefully! That might be the one to do the trick for you! I know it is very, very hard, but try to stay positive. I wish I was nearby so i can come and give you a well needed hug!
I forgot, were you on 800 mgs of Votrient? I believe so. But the good thing in all of this, is that they have something to move you on to right away! This is great news because 10 years ago we did not have this option! We have to try to look on the bright side of things, lest we go crazy! You have been a trooper with all that you have dealt with! I know you will soldier on and get through this also! We are here anytime you want to vent or just need a virtual hug! I am going to say a prayer for you and your daughter right after I send this email. Praying things turn around for you soon! Let us know what trial they offer and please keep in touch! Love to you and your daughter! XXOO0 -
Stay strong and positivetwinthings said:lifting you in prayer
So sorry to hear this news, Sue! I think this will be just a bit of a setback but you will get thru it and you will continue to survive!! I know you must be so scared but, we are all pulling for you and praying for you and your family.
Stay strong!!
Sindy
I know how hard it is to stay positive. But, do keep trying to stay positive. It does help. I had to work and work with myself all the time. And, still do. But, this trial treatment will be the cure for you. Keep pushing forward. Keep saying it to yourself and know that it is true.
Praying for you,
NanaLou
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In tears!angec said:Dear Sue, so sorry to hear
Dear Sue, so sorry to hear that the Votrient did not help! I know you have been through ALOT! Losing your husband and your father to cancer on the same day in 2011, two weeks later learning you have cancer, your dog having cancer, where does it end? Life just doesn't seem fair! But now, here we are two years later. You are still here fighting RCC. The Nexavar worked for some time, didn't it? You were on a trial, but do you know for sure you were getting the drug? It held you stable for a while then. They will maybe put you on Nivolumab hopefully! That might be the one to do the trick for you! I know it is very, very hard, but try to stay positive. I wish I was nearby so i can come and give you a well needed hug!
I forgot, were you on 800 mgs of Votrient? I believe so. But the good thing in all of this, is that they have something to move you on to right away! This is great news because 10 years ago we did not have this option! We have to try to look on the bright side of things, lest we go crazy! You have been a trooper with all that you have dealt with! I know you will soldier on and get through this also! We are here anytime you want to vent or just need a virtual hug! I am going to say a prayer for you and your daughter right after I send this email. Praying things turn around for you soon! Let us know what trial they offer and please keep in touch! Love to you and your daughter! XXOOOn waking up this morning and reading all your kind messages has me in tears. I still have not yet told anybody and my daughter has now headed off to school oblivious to it all. I do tend to bottle things up a lot and try to continue with life as normal, but not so normal to allow me to plan a holiday, enjoy a meal out with friends without feeling sorry for myself. Christmas is going to be tough, while my 2 sisters are enjoying their new grand babies (3 new ones born this year most recent one this past Saturday) I just can't get past the thought that this is something I may never have. One of my very good friends (who incidentally also lost her husband to leukaemia 5 years ago) became a grandmother for the 2nd time yesterday afternoon whilst I was receiving my bad news.
thanks for all your messages I just need some more time to process everything, give myself a swift kick in the rear end and get on with it.
Angec, I know I was on Nexavar for 12 months during the SORCE trial which I started within 3 months of my nephrectomy and I did start on 800mg of Votrient but raised liver enzymes reduced that to 400 which I continued until yesterday with minimal side effects. What scares me most is that the pancreatic and spleen lesions have appeared so quickly, last scan in August revealed nothing on either of these organs.
The study I will be joining is Cabozantinib vs everolimus, unfortunately nothing using nivolumab is available. Anyone else on this? I would consider HDIL 2 but this is not available in Australia but I did mention this to my oncologist yesterday and she will investigate this for me. I am going to also post on Smart Patients to ask for advice from any the other knowledgable members over there for options.
Thanks again, Sue.
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Hoping and Praying for the BestSuekub said:In tears!
On waking up this morning and reading all your kind messages has me in tears. I still have not yet told anybody and my daughter has now headed off to school oblivious to it all. I do tend to bottle things up a lot and try to continue with life as normal, but not so normal to allow me to plan a holiday, enjoy a meal out with friends without feeling sorry for myself. Christmas is going to be tough, while my 2 sisters are enjoying their new grand babies (3 new ones born this year most recent one this past Saturday) I just can't get past the thought that this is something I may never have. One of my very good friends (who incidentally also lost her husband to leukaemia 5 years ago) became a grandmother for the 2nd time yesterday afternoon whilst I was receiving my bad news.
thanks for all your messages I just need some more time to process everything, give myself a swift kick in the rear end and get on with it.
Angec, I know I was on Nexavar for 12 months during the SORCE trial which I started within 3 months of my nephrectomy and I did start on 800mg of Votrient but raised liver enzymes reduced that to 400 which I continued until yesterday with minimal side effects. What scares me most is that the pancreatic and spleen lesions have appeared so quickly, last scan in August revealed nothing on either of these organs.
The study I will be joining is Cabozantinib vs everolimus, unfortunately nothing using nivolumab is available. Anyone else on this? I would consider HDIL 2 but this is not available in Australia but I did mention this to my oncologist yesterday and she will investigate this for me. I am going to also post on Smart Patients to ask for advice from any the other knowledgable members over there for options.
Thanks again, Sue.
Sue,
Hoping and Praying for the Best. Therer are many survivors on this board beating this disease even with similar challanges to those facing you. Kidney Cancer Sucks, but it can be beaten.
Keep up the fight.
Icemantoo
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All best wishes and thinking
All best wishes and thinking of you and your daughter. Hib x
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best wishesHiberniangirl said:All best wishes and thinking
All best wishes and thinking of you and your daughter. Hib x
Sue I will be praying and thinking of you during this time of so many mixed feelings and emotions. Just know that we here on this board care about you. Prayers for you and your daughter.
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So sorry to hear this newsSuekub said:In tears!
On waking up this morning and reading all your kind messages has me in tears. I still have not yet told anybody and my daughter has now headed off to school oblivious to it all. I do tend to bottle things up a lot and try to continue with life as normal, but not so normal to allow me to plan a holiday, enjoy a meal out with friends without feeling sorry for myself. Christmas is going to be tough, while my 2 sisters are enjoying their new grand babies (3 new ones born this year most recent one this past Saturday) I just can't get past the thought that this is something I may never have. One of my very good friends (who incidentally also lost her husband to leukaemia 5 years ago) became a grandmother for the 2nd time yesterday afternoon whilst I was receiving my bad news.
thanks for all your messages I just need some more time to process everything, give myself a swift kick in the rear end and get on with it.
Angec, I know I was on Nexavar for 12 months during the SORCE trial which I started within 3 months of my nephrectomy and I did start on 800mg of Votrient but raised liver enzymes reduced that to 400 which I continued until yesterday with minimal side effects. What scares me most is that the pancreatic and spleen lesions have appeared so quickly, last scan in August revealed nothing on either of these organs.
The study I will be joining is Cabozantinib vs everolimus, unfortunately nothing using nivolumab is available. Anyone else on this? I would consider HDIL 2 but this is not available in Australia but I did mention this to my oncologist yesterday and she will investigate this for me. I am going to also post on Smart Patients to ask for advice from any the other knowledgable members over there for options.
Thanks again, Sue.
Sue. I'm sorry to hear the recent results of your scan. I know the devastation of not hearing good news. We heard so much bad news, we initially did not respond to hearing good news. We just kind of sat there in disbelief. Our first two drugs did not work. We took votrient and affinitior. We have been on inlyta since April with great success. Different drugs work for different people. I'm sure with all the choices one of the drugs will work for you. We wait to give our kids news until we can deliver the news without negative emotions, and when we have the plan for the future. Best wishes.
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News I didn't want to hear
Suekub, I have just read your post any I am so sorry that Votrient has failed you. I have stage 4 RCC and have been on Votrient for over 14 months. I feel that my life is literally measured four months at a time. I live in total fear of receiving the news that you just received. When I was diagnosed my daughter was also in her senior year in high school and we were going through a very difficult time with her. At that time my surgeon told me that “I may not be alive in a year” which translated to that I would not be alive to see my daughter graduated high school. At first we did not tell my children the true extend of my diagnoses. But after a while we sat our children down and told them. It was certainly best thing my wife and I did. When I spoke to my children I was blunt and honest about my condition. I told them that there may come a day when Dad is not around anymore and there will be life after Dad. But know this - It is not your father’s intention to check out of this world early. I will not leave this world without a fight and I will go out swinging. Please know that here on CSN you are in all our thoughts and prayers and we wish you the best. - BDS
PS - Since you live in Australia, there is an Australian company called Bionomics that is conducting clinical trials of a new promising drug called BNC105P. BNC105P is a vascular disrupting agent that shuts down the blood supply to solid tumors. I do not know if they are currently recruiting in Australia for the current Phase II trial or will be soon recruiting for a Phase III trial. Just something to keep in mind.
Web Link: http://www.bionomics.com.au/index.php )
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C-metBDS said:News I didn't want to hear
Suekub, I have just read your post any I am so sorry that Votrient has failed you. I have stage 4 RCC and have been on Votrient for over 14 months. I feel that my life is literally measured four months at a time. I live in total fear of receiving the news that you just received. When I was diagnosed my daughter was also in her senior year in high school and we were going through a very difficult time with her. At that time my surgeon told me that “I may not be alive in a year” which translated to that I would not be alive to see my daughter graduated high school. At first we did not tell my children the true extend of my diagnoses. But after a while we sat our children down and told them. It was certainly best thing my wife and I did. When I spoke to my children I was blunt and honest about my condition. I told them that there may come a day when Dad is not around anymore and there will be life after Dad. But know this - It is not your father’s intention to check out of this world early. I will not leave this world without a fight and I will go out swinging. Please know that here on CSN you are in all our thoughts and prayers and we wish you the best. - BDS
PS - Since you live in Australia, there is an Australian company called Bionomics that is conducting clinical trials of a new promising drug called BNC105P. BNC105P is a vascular disrupting agent that shuts down the blood supply to solid tumors. I do not know if they are currently recruiting in Australia for the current Phase II trial or will be soon recruiting for a Phase III trial. Just something to keep in mind.
Web Link: http://www.bionomics.com.au/index.php )
Google XL184. Developed by Xlisis/Bristol-Myers.This drug is available on line,not in trials.
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