Has anyone here ever been close to the brink...

jannes75 · July 2014

and still managed to make it back and get stronger? I'm just curious if there are any stories of those who may have been at deaths door, but managed to fight back.

Sorry for the long post, but I guess I'm worried and want to paint a full picture to get any insight. A little back story first. I've written on here a few times but frequently read the posts a lot as I find so many of them inspiring., My 44 yo sister has stage IV with mets in lungs, liver and bones. She started off so well and has always responded to chemo pretty good. However, when she had her kidney removed last spring and had to get off chemo, her tumors grew quite a bit, it's obvious her cancer is extremely aggressive. She got back on her Votrient but it seemed to not work the way it had and so she switched to Inlyta which, again, she did well on. The problem was she had some mets in her leg and pelvis that caused her extreme pain and weakened her a bit. For various reasons she didn't get radiation right away (but got those shots to strengthen the bones) and eventually was able to leave her job (she owned her own business and had to find a buyer, etc) and moved in with my parents.

Her leg got progressively worse and they decided it needed a rod and to go ahead with a partial hip replacement. While the surgery itself went well, several things happened. They couldn't fix one part of her pelvis that had a crack so they were planning on radiation but had to wait for her to heal from the surgery. The pain from this break and the pain from the hip replacement became overbearing and they put her on a ton of pain medication. She started not eating much and long story short it weakened her a lot. Her cancer came back aggressively as well. They put her right back on Inlyta when they felt it was safe and the cancer seemed to respond well, and visibly went back down.

Once her pain was fading, we brought her home with the hopes of recovering there. This was towards the beginning of June. Since then it has been a lot of bad and then better days. The problem is she never has really gotten stronger or started eating much and lost a lot of weight. It's been a roller coaster as we've had many days that seemed promising, then she was right back to not eating or refusing PT.

Last week, she started vomiting some dark stuff that we thought was blood and we took her to the hospital. Now she either has ulcers or even tears in her stomach, likely from the chemo. So she had to get off of that until they heal. Now she is in the hospital, thinner and weaker than ever. The problem is less the cancer directly (although now that she's temporarily off it, we worry.) The problem is just her weakness.

The doctors pretty much think this is the end, but she still wants to fight! In her mind, she is better because she feels better than she did a couple months back. But we don't know how she will be able to withstand a new drug (Sutent) in her weakened state, not to mention, the side effects are similar to Inlyta. She has a very big uphill battle. I think she was surprised to hear the doctors talk about hospice as in her mind, because she feels better than before, she thinks she can get better (and maybe she can.) She is currently on a feeding tube in her nose to help get nutrition in her, although the doctors don't seem to think that will make much of a difference.

Truthfully, she has been exhibiting most of the signs you see in the last few months of life, like not wanting to eat, anorexia, fatigue, so part of us accepts that this is probably it. But, on the other hand, her willingness to keep fighting, the fact that her vitals are good and up until now, all of her bloodwork has been good, it makes us wonder if recovery might be possible, even if it would be slow and hard.

So, my question was if anyone had any stories of those who made comebacks when it seemed impossible? We are realistic, but want to believe there is a possibility too. It's just been a very hard and stressful few months. Part of me thinks she could be gone in as little as a couple of weeks, part of me thinks she could linger longer and a small part thinks, if she would be able to handle Sutent initially and get a bit stronger, that maybe she could pull this one out.

Thanks for listening and best of luck to all of you, all survivors and their families are in my prayers!

I am alive · July 2014

I am so sorry your sister is

I am so sorry your sister is going through this. I cannot offer insight on her situation but others here - and elsewhere - may. Today has been a slow day here on CSN. More people will check in over the weekend. In the meantime, have you posted on Smartpatients.com? It's a cancer forum similar to this. It may have more participants, I dont know. but several of the regulars have been caretakers to now deceased loved ones. They can speak to how the end unfolds and what to expect, though probably everryone's story is different. At Smart Patients, search for a thread called, I believe, "what is it like to die?" Lots of info in it you might find helpful. There have also been stories told of dramatic improvements. People who have been given months to live who rallied and lived on for years. The will to live and fight on cannot be underplayed. I hope folks step forward with some of those stories, and I hope your sister rallies.

GSRon · July 2014

I am alive said:
I am so sorry your sister is
I am so sorry your sister is going through this. I cannot offer insight on her situation but others here - and elsewhere - may. Today has been a slow day here on CSN. More people will check in over the weekend. In the meantime, have you posted on Smartpatients.com? It's a cancer forum similar to this. It may have more participants, I dont know. but several of the regulars have been caretakers to now deceased loved ones. They can speak to how the end unfolds and what to expect, though probably everryone's story is different. At Smart Patients, search for a thread called, I believe, "what is it like to die?" Lots of info in it you might find helpful. There have also been stories told of dramatic improvements. People who have been given months to live who rallied and lived on for years. The will to live and fight on cannot be underplayed. I hope folks step forward with some of those stories, and I hope your sister rallies.

Yes..! Of course some people

Yes..! Of course some people have made the comeback... can't think of any names.. and I was waiting for at least one of them to speak up...

But here is my $0.02 worth... as your sister is willing to fight, she needs a doctor willing to participate in the fight.. and it sounds like she does not have a doctor to take up the charge.. Perhaps you can find a doctor willing to take her on..?? I would think many if not most doctors would see a young woman and want to help... I am being polite.. I think her current doctor is the Sh**s..!

Good Luck..!

Ron

I am alive · July 2014

GSRon said:
Yes..! Of course some people
Yes..! Of course some people have made the comeback... can't think of any names.. and I was waiting for at least one of them to speak up...

But here is my $0.02 worth... as your sister is willing to fight, she needs a doctor willing to participate in the fight.. and it sounds like she does not have a doctor to take up the charge.. Perhaps you can find a doctor willing to take her on..?? I would think many if not most doctors would see a young woman and want to help... I am being polite.. I think her current doctor is the Sh**s..!

Good Luck..!

Ron

I'm with Ron

Ditch the doc & find a fighter.

Djinnie · July 2014

Hi jannes, I am very sorry to

Hi jannes, I am very sorry to hear about your sister, how fortunate that she has you by her side. I know of people that have rallied when all seemed lost. Nothing is impossible and your sister obviously feels optimistic, the only ones that appear to have given up are the doctors. I agree with the other comments, she needs a better medical team around her.

I have a very aggressive stage IV cancer too, which has spread to my lungs, lymph and now back into what's left of my kidney. I have been on Votrient for a while, which has caused heart inflammation. I get a lot of pain, I am constantly weak and tired, and as my Oncologist put it, showing signs of anorexia, I have lost over 20lbs. My appetite is very poor, so my Oncologist prescribed a protein and vitamin drink, it was also full of sugar. I binned that and started taking whey powder every day along with green smoothies. I am having small amounts to eat throughout the day, my stomach seems to cope better that way. My weight has begun to stabilise and I am walking each day to try and build up my strength. I have some liver issues from the Votrient so there will be a possible change to Afinitor soon. I am telling you all this because I just wanted to say that even though my body has weakened my resolve hasn't. I think your sister probably feels that way too, there are many hurdles to overcome but everything is possible!

I wish her all the best, keep us up dated, you both have our prayers and support:)

Djinnie xx

Sent from my iPad

NewDay · July 2014

Djinnie said:
Hi jannes, I am very sorry to
Hi jannes, I am very sorry to hear about your sister, how fortunate that she has you by her side. I know of people that have rallied when all seemed lost. Nothing is impossible and your sister obviously feels optimistic, the only ones that appear to have given up are the doctors. I agree with the other comments, she needs a better medical team around her.

I have a very aggressive stage IV cancer too, which has spread to my lungs, lymph and now back into what's left of my kidney. I have been on Votrient for a while, which has caused heart inflammation. I get a lot of pain, I am constantly weak and tired, and as my Oncologist put it, showing signs of anorexia, I have lost over 20lbs. My appetite is very poor, so my Oncologist prescribed a protein and vitamin drink, it was also full of sugar. I binned that and started taking whey powder every day along with green smoothies. I am having small amounts to eat throughout the day, my stomach seems to cope better that way. My weight has begun to stabilise and I am walking each day to try and build up my strength. I have some liver issues from the Votrient so there will be a possible change to Afinitor soon. I am telling you all this because I just wanted to say that even though my body has weakened my resolve hasn't. I think your sister probably feels that way too, there are many hurdles to overcome but everything is possible!

I wish her all the best, keep us up dated, you both have our prayers and support:)

Djinnie xx

Sent from my iPad

Jannes,
I'm so sorry your

Jannes,

I'm so sorry your sister is having such a rough go of it. I think that sometimes people, including the medical professionals, make a judgement that they think someone is at the end based on how the person looks when it turns out that most of their condition is actually being caused by the drug, not the cancer. Once the person comes off of the drug, they start feeling better. My point is not that it is a good thing to be off of the drugs. I'm just saying that the SE's can make someone appear worse off than they really are. But then I could be wrong in your sisters case. That was just my 2 cents. I think it is very good news that she wants to fight and I do know that there has been at least one recent story of someone on SmartPatients that was in the hospital and the doctors said that they were at the end, but they did recover and are back to the fight. Do keep us posted on how she is doing. You and she will be in my prayers.

Kathy

Jan4you · July 2014

HUGS to you Jannes, and to

HUGS to you Jannes, and to your sister as well~Does she know you are posting in her behalf?

I like her spirit! Let it shine!! Trust her judgment.

And I appreicate all you are doing in behalf of your sister and her care. Yet it seems you are being realistic. Its HER life, her fight and allow her to continue this journey. She'll know when its time to quit, trust me. No one wants regrets of the "could've beens" or "what ifs."

I will pray for you all~ must be hard on your family as well. Dang cancer!!!! What a teacher eh?

Let her know WE are all on HER side and support her no matter what!! Keep us posted hon okay? You're the BEST SISTER EVERRR!!

Warmly, Jan

angec · July 2014

So sorry your sister is going

So sorry your sister is going through all of this! Also how hard it is on the family as well! Many people do come back from this state. It is like the others have said, find a doctor willing to fight. I have heard plenty of stories where doctors have suggested hospice and then the patient found other treatment like, Cabo or Pdl-1, or went on a trial. I don't know much about her case, but what was the chemo all about? Does your sister have sarcomatoid rcc? Where is she being treated? Is she with an RCC specialist? Many questions, I know, but the information will help others to be able to help you. I would continue to fight as long as she is willing. She is very young and mind is strong. Please keep us updated as we keep you all in our prayers! XXOO

And yes, please go to smartpatients.com and post there. Many very experienced in cancer. All the best to you and yours. Stay positive!

brea588 · July 2014

so sorry your sister is so sick

so sorry she is so sick but if she is willing to fight and wants too then I would try to get her the best docs i could find. I certainly will pray for you all . I just believe where there is life there is hope of her getting better. Prayers

foxhd · July 2014

brea588 said:
so sorry your sister is so sick
so sorry she is so sick but if she is willing to fight and wants too then I would try to get her the best docs i could find. I certainly will pray for you all . I just believe where there is life there is hope of her getting better. Prayers

All I can say,

is that if I went along with my first few oncologists, I wouldn't be here to answer this. Several told me there was nothing that they could do. Then I found one who has saved my life. I think that is what you want to hear. It seems obvious it is time to see a better doctor.

jannes75 · July 2014

Thank you

Just wanted to say thank you for all your kind words. My sister Tracy passed away on July 22nd at 44 yo, surrounded by her family who sent her to peace with a lot of love and light. I am so proud to say she fought TO THE VERY END. Only a few hours before she feel into an unresponsive sleep and just about 36 hours before she died, she turned down hospice because she refused to let go. She didn't even understand why they were offering it to her, she never thought about dying, she radiated such a strength of will and determination that even when her body was clearly failing her, we could still look at her and have hope she would somehow bounce back. It truly seemed possible even when facing the impossible, she was that much of a fighter. She fell asleep assuming she'd wake up to fight another day and we never let her think otherwise, even knowing the time was close. I am so proud of her and will cherish the time I spent with her before she passed. 2 days before she died my family sat in her room with her and talked for several hours about everyday stuff, then we got her cleaned and dolled up to see her boyfriend. She wanted a feast so we had brats, pizza and other yummies, all of which she was able to partake in, and watched some old home movies. We are so grateful for that day with her.

She went through a lot the last couple of months but never complained. Every complication that came her way wasn't something she saw as dooming her, but just one more obstacle to overcome before she got better. I tell all of you this because I pray that no matter what complication comes your way, please stay strong! I wish you all the very best and will be checking in on the forum from time-to-time to see how everyone is doing.

I hope someday, once I've absorbed our loss, to give back as well. She was an inspiration to me and anything I can do to help I would do in her honor.

Take care, Jen

GSRon · July 2014

jannes75 said:
Thank you
Just wanted to say thank you for all your kind words. My sister Tracy passed away on July 22nd at 44 yo, surrounded by her family who sent her to peace with a lot of love and light. I am so proud to say she fought TO THE VERY END. Only a few hours before she feel into an unresponsive sleep and just about 36 hours before she died, she turned down hospice because she refused to let go. She didn't even understand why they were offering it to her, she never thought about dying, she radiated such a strength of will and determination that even when her body was clearly failing her, we could still look at her and have hope she would somehow bounce back. It truly seemed possible even when facing the impossible, she was that much of a fighter. She fell asleep assuming she'd wake up to fight another day and we never let her think otherwise, even knowing the time was close. I am so proud of her and will cherish the time I spent with her before she passed. 2 days before she died my family sat in her room with her and talked for several hours about everyday stuff, then we got her cleaned and dolled up to see her boyfriend. She wanted a feast so we had brats, pizza and other yummies, all of which she was able to partake in, and watched some old home movies. We are so grateful for that day with her.

She went through a lot the last couple of months but never complained. Every complication that came her way wasn't something she saw as dooming her, but just one more obstacle to overcome before she got better. I tell all of you this because I pray that no matter what complication comes your way, please stay strong! I wish you all the very best and will be checking in on the forum from time-to-time to see how everyone is doing.

I hope someday, once I've absorbed our loss, to give back as well. She was an inspiration to me and anything I can do to help I would do in her honor.

Take care, Jen

Oh Jen... so sorry to hear

Oh Jen... so sorry to hear this... you and your sister sound like awesome people.. I too was hoping she would make a turn around.. RIP young lady.. too young.. and peace to the family.. There is another Angel in heaven.. sigh...

Ron

danbren2 · July 2014

GSRon said:
Oh Jen... so sorry to hear
Oh Jen... so sorry to hear this... you and your sister sound like awesome people.. I too was hoping she would make a turn around.. RIP young lady.. too young.. and peace to the family.. There is another Angel in heaven.. sigh...

Ron

So Sorry!

Jen,

I am so sorry about your sister, but she certainly was one very strong woman! Sending hugs and prayers for you and your family!

Brenda

I am alive · August 2014

Jen, I just saw this notice

Jen, I just saw this notice about your sister's passing.I am so sorry. She was young and heroic and loved you all so much. What a blessing that you all could all be there with her at the end. I will think of her often. Stay strong.

anmazon · August 2014

jannes75 said:
Thank you
Just wanted to say thank you for all your kind words. My sister Tracy passed away on July 22nd at 44 yo, surrounded by her family who sent her to peace with a lot of love and light. I am so proud to say she fought TO THE VERY END. Only a few hours before she feel into an unresponsive sleep and just about 36 hours before she died, she turned down hospice because she refused to let go. She didn't even understand why they were offering it to her, she never thought about dying, she radiated such a strength of will and determination that even when her body was clearly failing her, we could still look at her and have hope she would somehow bounce back. It truly seemed possible even when facing the impossible, she was that much of a fighter. She fell asleep assuming she'd wake up to fight another day and we never let her think otherwise, even knowing the time was close. I am so proud of her and will cherish the time I spent with her before she passed. 2 days before she died my family sat in her room with her and talked for several hours about everyday stuff, then we got her cleaned and dolled up to see her boyfriend. She wanted a feast so we had brats, pizza and other yummies, all of which she was able to partake in, and watched some old home movies. We are so grateful for that day with her.

She went through a lot the last couple of months but never complained. Every complication that came her way wasn't something she saw as dooming her, but just one more obstacle to overcome before she got better. I tell all of you this because I pray that no matter what complication comes your way, please stay strong! I wish you all the very best and will be checking in on the forum from time-to-time to see how everyone is doing.

I hope someday, once I've absorbed our loss, to give back as well. She was an inspiration to me and anything I can do to help I would do in her honor.

Take care, Jen

So sorry for your loss, Jen

You and your sister are in my prayers.

Billy's Wife · August 2014

Jen,
I am deeply sorry for

Jen,

I am deeply sorry for your loss. As I read your post you reminded me of myself as my husband faced his final days, 19 months ago. He too was a fighter like your sister. We too weren't sure if the end really could be near because it wasn't a thought he allowed into his consciousness. I described myself as an optimistic realist during his battle. I knew what I was seeing and hearing but if there was any chance at all I wanted so much to allow it in. I learned it was his fight and no one else's. He called the shots, he set the tone. He wanted to live, he wanted to stay with us, it just wasn't God's plan for him.

We too were frustrated with the medical community and their willingness to 'give in'. I wish more of them would' get their hands dirty'-so to speak and just get INTO the fight with their patients, that would require truly hearing them and their resolve and helping them to just try as hard as they could, to fight 'their way'!

Like you I'd like to find a way to give back in his honor, but I wish it could be in a way that helped all kidney cancer patients specifically. The patients on this website are extraordianry people like our loved ones and I wish I could do something to lighten their load. You and me and all of their families feel their pain in our own way and wish cancer was OVER!!

God bless you, your family and your sister. I hope she has met my husband in heaven in that special place for those who have earned their wings.

Arleen (Billy's Wife)

twinthings · August 2014

jannes75 said:
Thank you
Just wanted to say thank you for all your kind words. My sister Tracy passed away on July 22nd at 44 yo, surrounded by her family who sent her to peace with a lot of love and light. I am so proud to say she fought TO THE VERY END. Only a few hours before she feel into an unresponsive sleep and just about 36 hours before she died, she turned down hospice because she refused to let go. She didn't even understand why they were offering it to her, she never thought about dying, she radiated such a strength of will and determination that even when her body was clearly failing her, we could still look at her and have hope she would somehow bounce back. It truly seemed possible even when facing the impossible, she was that much of a fighter. She fell asleep assuming she'd wake up to fight another day and we never let her think otherwise, even knowing the time was close. I am so proud of her and will cherish the time I spent with her before she passed. 2 days before she died my family sat in her room with her and talked for several hours about everyday stuff, then we got her cleaned and dolled up to see her boyfriend. She wanted a feast so we had brats, pizza and other yummies, all of which she was able to partake in, and watched some old home movies. We are so grateful for that day with her.

She went through a lot the last couple of months but never complained. Every complication that came her way wasn't something she saw as dooming her, but just one more obstacle to overcome before she got better. I tell all of you this because I pray that no matter what complication comes your way, please stay strong! I wish you all the very best and will be checking in on the forum from time-to-time to see how everyone is doing.

I hope someday, once I've absorbed our loss, to give back as well. She was an inspiration to me and anything I can do to help I would do in her honor.

Take care, Jen

Jen, I am so sorry for your

Jen, I am so sorry for your loss. My thoughts and prayers are with you and your family.

Thank you for sharing her story.

Sindy

Has anyone here ever been close to the brink...

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