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News I didn't want to hear

Suekub's picture
Suekub
Posts: 131
Joined: Apr 2013

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

 

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Oh my Sue... sorry to hear your news... hang in there.. hope the next treatment does the trick for you... prayers sent..

Ron

srbelle1
Posts: 123
Joined: Jul 2013

sue: I am so very sorry to read your news and hear your disappointment; I am hopeful that you will find a treatment plan/trial since there are some going on.

sarah

 

 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

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

Jojo61's picture
Jojo61
Posts: 473
Joined: Oct 2013

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!

 

 

foxhd's picture
foxhd
Posts: 2055
Joined: Oct 2011

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.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

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!

cubsfan9
Posts: 45
Joined: Oct 2013

Good 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

I am alive
Posts: 229
Joined: Jul 2012

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.

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

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.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

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

NanaLou
Posts: 69
Joined: Oct 2011

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

 

angec's picture
angec
Posts: 663
Joined: Mar 2012

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!  XXOO

Suekub's picture
Suekub
Posts: 131
Joined: Apr 2013

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.

 

 

icemantoo's picture
icemantoo
Posts: 1651
Joined: Jan 2010

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

a.oakley
Posts: 32
Joined: Oct 2012

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.

angec's picture
angec
Posts: 663
Joined: Mar 2012

Sue, if you can get the Cabo that would be good! Did they mention Inlyta at all? Just wondering.  I know there will be others celebrating births, marriages, graduations and just going about life.  It all doesn't seem fair! But just maybe you will see your daughter get married and have children.  We don't know what can happen! Look at Fox for example.  He had mets all over and was told there was nothing that can be done for him. Well, he kept looking, and finally found the Nivolumab trial. From there he went to IL-2 (which we hope to hear he was cured), so the same can hold true for you, Sue.  You have to admit that it is possible! So, let's from here on out, after you kick yourself in the pants (ha), let's try to be positive. Let's take one day at a time and live fully on that day!  For we don't know what tomorrow can bring!  Tomorrow can bring a cure!  

You absolutely need to give your brain time away from thinking about cancer! You need to go out with friends, go to the movies and live your life!  We are with you and and intend to fight right along side you! You can do this!   My bet is on you!

Suekub's picture
Suekub
Posts: 131
Joined: Apr 2013

Today I received the news that I have been randomised to the Afinitor arm of the Meteor study (not sure if I drew the short straw). Took the 1st pill this afternoon so the waiting game for side effects and whether it has any effect on slowing the growth of exisitng lesions and stopping any new ones.

I really don't know what other options will be available if this drug fails.....

 

Jojo61's picture
Jojo61
Posts: 473
Joined: Oct 2013

Hi Sue,

Thanks for posting. I have been thinking about you. I pray that this drug is the solution....then you won't have to worry about other options.

May your results be optimal, and your side effects few.

God bless.

 

Jojo

 

Hiberniangirl
Posts: 19
Joined: Sep 2013

All best wishes and thinking of you and your daughter. Hib x

brea588
Posts: 129
Joined: Jul 2012

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.

gatorbob
Posts: 21
Joined: Oct 2013

Please,please call Emory or Mayo and inquire about ly2875358!!!!!

The trial is open and looking for subjects. It will cost a little of your time.......that's all. Good luck!!

BDS's picture
BDS
Posts: 105
Joined: Aug 2012

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 )

 

gatorbob
Posts: 21
Joined: Oct 2013

Google XL184. Developed by Xlisis/Bristol-Myers.This drug is available on line,not in trials.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

XL184 is now know as Cabozantinib or Cometriq.

elpasorudy's picture
elpasorudy
Posts: 81
Joined: Jan 2013

Sue,

I was sorry to hear about your bad news. But you do have options for treatment, and that is good. Will keep you in my thoughts and prayers: May the sun
bring you new energy by day.  May the moon  softly restore you by night.  May the rain  wash away your worries.  May the breeze  blow new strength into your being.  May you walk  gently  through the world and know its beauty all the days of your life.

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

Sue,  I am so sorry to hear your news.  You are in my thoughts and prayers.  I know its hard but try to stay positive and strong.  Of course you are allowed have down days and that is completely natural but you are one tough cookie to get this far and you will get soooooooooo much further....I just know it....take some time for you too x

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi Sue, I'm so sorry to hear about your news...What Ange says is true, there are so many new treatment options out there and some people have just been lucky to have found the right drug for them the first time around. But everyone is different, everyone responds to treatments differently...maybe the second drug you try will be the right one for you.

Mom has been on Votrient for just over 3 months and we found it's metastasiszed to her vulva, which is extremeltey rare. The gyn at MSKCC said she's only seen 1 case of a met there in 10 years. We were both devastated and cried our eyes out but we're ready to battle this with the next treatment choice out there. 

I'll actually be traveling to Oz next week. Is there anything you want me to bring you from the states?? Anything your daughter would like? Specific lollies?? If I could bring you treatment options I'd stick them all in my suitecase for you! 

Suekub's picture
Suekub
Posts: 131
Joined: Apr 2013

We have been to the US many times as my brother currently lives in Santa Fe NM (prior to moving there he lived in San Francisco for many years) and your offer is much appreciated. I can't think of anything but I always love shopping when I visit your country and love checking out the stores and outlet centres of brands that aren't available here.

Where in Australia will you be visiting? I am in Sydney, but I have been given the opportunity to travel to the Whitsundays on the Barrier Reef next week, very last minute and much needed. So Monday morning I will be on a flight and by lunch time may just be sitting by the pool enjoying the sun.

Every on the this board has been too kind and I appreciate all the kind thoughts and wishes. My initial shock has worn off and I am a little more rational now, just need to note down loads of questions for my next oncologist visit. My oncologist is the chief investigator of the study I may be included in but I need to ask about consequences of futures treatment and possible exclusions that may happen. So much stuff to think about....

Sorry to hear about your Mum.

Sue

 

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