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Can't stop crying tonight....

Dan6652
Posts: 25
Joined: Oct 2016

I just came home ffrom visiting my brother. He is currently in a rehab hospital after spine surgery to alleviate pain from a T-11 spinal met and to stabilize his spine for radiation. Tonight he felt ike the excruciating pain in his back and side beforevthe surgery was back. He was so down and heartbroken tonight it took everything in my power to keep a stiff upper lip so he wouldn't see more breakdown. This nightmare had been going on since mid- september. First they removed the kidney and pain was there and then they did the spinE surgery. We are 2 months out and he still hasn't had any treatment. HEd's getting his staples out tomorrow and then seeing oncologist, pain management physician and  radiologist about when they plan to start targeted therapy for the reminant of the spinal tumor. His spirits have been pretty good up until this point but tonight is the most depressed I've ever seen him. I'm losing All hope in science snd prayer tonight. He's had nothing but obstacles and we are only 2 months into this battle. Im not sure how he can get better if treatment keeps getting delayed. Oncologist actuallyvsaid he might be a good candidate for Il 2 in the future but I can't imagine having hope in that if we can't even get past this stage.  I'm sitting here listening to my 86 year old mother cry herself to sleep while I'm crying typing this. Sure feels like the lights have gone out in our lives. Thanks for listening.

JoanneNH
Posts: 115
Joined: Sep 2013

I am so sorry for your brother's pain and your family's pain.   I have no suggestions, but sending hugs to you all.  I bothers me so much to hear doctors say that patients should not suffer with pain, yet they do.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

You called this a nightmare and it is, but like all nightmares it will come to an end. The start of treatment is often pretty tough  and its great that your brother has a loving family to support him.

I think crying is a perfectly reasonable reaction to this situation.

Good luck to you all.

Dan6652
Posts: 25
Joined: Oct 2016

Footstomper,

Thank you so much for taking the time to respond to my situation.

I know you have enough going on yourself. Please know I am praying for your improved health in the months to come.

You've been a true inspiration to me and everyone o this board.

Please hang in there--better days are ahead.

Thank you again.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

It's scary.

I can sympathize with the feeling of delay. It certainly doesn't feel like anyone else has the same sense of urgency as me and my wife to get treatment underway and stop/reverse this crap. I can tell you that radiation therapy was a big nothing-burger. No side effects for me.

I can only say that my hope comes from the support of my family, friends, and people here. I feel like I have a lot more in me than the stats on the Internet, so I'm ignoring those. I do push my doctors when I think they are moving too slowly, so does my wife.

I wish you, your brother, and your family the best.

Dan6652
Posts: 25
Joined: Oct 2016

Thank you for your response.

Yes, it's very scary. I've never been so scared in my life. The diagnosis is bad enough but when you are fighting daily pain it makes a bad situation even worse. Some days I walk around in a complete fog barely able to function. I can't imagine how he feels. Your fine one day and sicker than a dog the next. How long did it take you to recover from the spinal surgery? He is going into his second week of rehab. He is improved but still his blood  pressure tanks at times and he is very fatigued. I'm wondering if you felt the same way? I assume you still take medications for the pain from your spinal met? How well is the pain controlled.?Are you able to do your normal daily activities or does it significantly impact your daily life? I think if he could get some quality of life back his mental state would significantly improve. He does see pain management doc but they have struggled in finding a happy medium for him. I'm wondering if a palliative care doctor would be better? I'm sorry for all the questions but I'm trying to find some answers to all this madness. I  just wish I could make this all go away for him and the rest of the people on this board. I HATE CANCER! I'm so sick of it sucking all the joy out of people's lives.

Please take care and keep us posted on your progress.

I wish you the best of luck with your new treatment.

 

 

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Dan,

I was in the ICU for 6 days, then they moved me to physical rehabilitation. By the time I had my surgery though, my spinal cord had been compressed to the point where I had lost total control of my left leg, a lot of function in my right leg, was retaining urine (couldn't pee) and lost a lot of sensation below the waist. I spent another 2 weeks in physical rehabilition. I was released on Oct. 21st able to walk with a walker. I'm on forearm crutches now, able to do small distances (20-50 feet) unassisted.

I've not had blood pressure issues. I am still taking Percoset, 7.5mg, X2 every 4 hours as needed for tissue pain (nociceptive?) and Gabapentin, 300mg, X3 per day for nerve (neuropathic) pain. My mood and outlook do, definitely follow my pain, but both are pretty well controlled with these medications.

I run a haunted house, so right now is my busy season and, even though I can't do much of anything physical from my forearm crutches and lazy boy chair, I am keeping busy doing the admin work and doing stuff I love. I'm sure that helps.

It does hit me, a couple times a day, "$h!+, I have cancer.". But I've got a lot on my plate, a lot I want to still do, so I research what is the best way to turn my "fatal disease" into a "chronic disease" and live.

I have no problem with the questions, whatsoever. Keep on asking, as it sounds like our cases have quite a bit in common.

My best to you. I can't imagine what my wife, who is playing the role of my rock, like you are playing for your brother, is/has gone through. A lot of added stress, work, worry, etc.

Give my best to your brother, too. You all hang in there.

Dan6652
Posts: 25
Joined: Oct 2016

Thank you. My brother will be getting his radiation next week and also starting Votrient. Good luck with your treatment.

Dan6652
Posts: 25
Joined: Oct 2016

Hello, 

i know your case is very similar to my brothers. I am his sister and I've spoken to ybefore ere. He was released from rehab on Monday and completed his 2nd day of radiation. he is still on pain meds(ms voting and gave pectin) for residual nerve pain. He seems to have lost his appetite completely and is very fatigued. I know that radiation sometimes causes fatigue but both the loser odd appetite and fatigue started before the radiation. He will start Votrient like you because they have placed Il-2 on the back burner since he is so week from the spinal surgery. I alsthug ink he is very depressed and anxious over the whole situation--which I completely understandJustin recovery seems a lot summit her than Khush and I'm extremely worried. Ibe heard that Votrient makes you lose weight and I'm afraid that he will become too weak.he is a little over 3 weeks from surgery. How is your appetite and stAmina?

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

My appetite hasn't diminished yet. I've been on Votrient for a little under a week.

So far, I've had indegestion and diarrhea. The indegestion is likely because of another med I'm taking and the diarrhea has been mild but likely due to the Votrient.

No fatigue as of yet.

I also can understand the depression and anxiety, but I just know I'm doing all that I can do and whatever is going to happen is going to happen. I may just be in denial, but I haven't really felt much depression or anxiety yet. I'm just following my Dr's advice and working on stuff that I like working on while on short-term disability.

I always wanted to own and run a haunted house with my family. This is the year we decided to take out a loan against the house and start up our business. Perfect timing; I was diagnosed with a kidney tumor right before our season started and spent a good portion of the season in the hospital while my family built the business. I'm keeping myself busy and entertained by continuing to build up the buisiness so that, God forbid, if I'm not around too much longer, my family has a business. I do, though, intend to be around long enough to see it become a large, successful business.

A lot more than what you asked for, but I guess it's my way of saying, whatever's going to happen is going to happen. The more positive you remain for your family and your brother, the better it is for everyone.

Dave

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

"A lot more than what you asked for, but I guess it's my way of saying, whatever's going to happen is going to happen."

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

God bless you and your family during this very hard time. What a blessing to have his family with him and caring so much. Sometimes it feels like life will not get better but it will.

Dan6652
Posts: 25
Joined: Oct 2016

For the kind word!

Best wishes for good health!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

It is so hard to watch a loved one suffer, personally went thru this with my youngest brother (lung ca) and my dear uncle (oral ca).  If I could have reached in to take their pain, I would gladly have done so, as I'm sure you would.  Unfortunately, we are powerless in the struggle.  That lack of control is what would drive me to tears and sometimes near the brink of insanity. (But I'm a self-admitted control freak, hard as I try to keep it in check)

Try not to lose your faith that better days lie ahead.

I will be praying for all of you,

Donna~

Dan6652
Posts: 25
Joined: Oct 2016

For your support and prayers.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

So sorry to hear what your brother and you as family are going through. Pain like that is miserable and - as others have said - crying is a totally reasonable response. 

Prayers and caring thoughts for your brother, you, your mom, and the rest of your family. Hugs to you all. 

Jerzy

Dan6652
Posts: 25
Joined: Oct 2016

For your suport. Best of luck to you!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is just hang on. I promise that you can handle this. We all have.

Dan6652
Posts: 25
Joined: Oct 2016

Thank you. You are an inspiration. Stay well!

Dan6652
Posts: 25
Joined: Oct 2016

My brother had an appt with the oncologist today. Dr. felt IL-2 was not a good option at the moment since he is so weak from the kidney surgery and subsequent spine surgery. This was a little disappointing to me since although slim it is his only chance for complete remission. Dr said he can always try IL-2 when he is stronger but i thought it was always better as a first line treatment. Dr. also said IL-2 will most likely be going by the wayside in the future as other treatments become available. The plan at the moment is 10 days radiation for the reminants of the spinal met and starting Votrient  he is currently very thin from the 2 surgeries. I can't wait until he gains weight anstates back to his daily activitiways Fingers crossed. Did anyone do IL-2 after targeted therapies? Also, what is PD-1 and is it still in clinical trials?

angec's picture
angec
Posts: 924
Joined: Mar 2012

Before he goes to Votrient, it might be good to start with opdivo.  Votrient is a great drug, but i would  start with opdiva since it is an immuntherapy and side affects are minimal.  He will lose weight on Votrient for sure.  See about Opdivo which is an iv, not chemo, which he takes every two or three weeks.  Thete are others here on that.  Push for it.  Not  sure if it spproved for rcc but i think it is. If not get it off label. 

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hang in there!  When cancer is discovered it is devastating. But, there are a lot of new meds on the market that can do wonders.  Lots of great examples on these boards of those here past five years.  They have now  found ways to treat cancer as a chronic disease.  Take one day at a time and continue  being positive.  It is always harder in the beginning.  Once he heals they will do radiation  which will help with pain and Dimish the remaining tumor. Then he can start targeted treatment if he needs it.  If the nodules are small, it is good.  Try not to read too much on the net, outdated information can get you more worried. If you haven't already, sign up at smartpatients.com.  They are very knowledgeable and up to speed on new treatment.  Hugs to all and mom! He will do fine!

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Dan,so sorry  your family is going through all this at this time. No one wants to see a loved one suffer and go through so much.  Let your brother know that we, complete strangers, are there for him and understand best we can~ok?

And just a suggestion: write a journal on each and every day, week or so and read it back to him at times so he can see what he already made it through, starting with each of those surgeries. Sometimes you have to look back to see you made it farther than you feel.

But I think YOU, Dan, are an amazing brother!!

Love can heal more than the heart!

Hugs, Jan

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Your brother will improve.. he had two huge surgeries and his body needs time to recover from the rude invasions.

PD-1 is "programed death-1" I beleive.   Bristol Myers Squib has invented Opvido (nivolumab) and since November 2015 it is approved for RCC. It is an imunotherapy drug and many trials are still ongoing with many drug companies to develope the PD-1 route to cure cancers.  PDL-1 is the other half of a puzzle of  pathways that are being tackled the same way.

I am sure that IL-2 can be given even after 1st line targeted therapies... so Votrient can be done first, and later IL-2.  Perhaps those who are more experienced in stating information about those two questions will chime in.

Time will help your brother, and you too until he gets stronger... my prayers will include you both.

Pam

 

mrou50
Posts: 389
Joined: Mar 2013

He does get better, and it is okay to cry and to vent.  We all do it this disease will cause numerous ups and downs but as long as you support your brother and have continued famly support you and he will gain strength.

Mark

Dan6652
Posts: 25
Joined: Oct 2016

Mark--thank you!

This has berna roll coaster ride since mid-September with more ups than downs but we are trying our best. I wish you the best of luck with your current treatments. God Speed!

gregslovey
Posts: 33
Joined: Oct 2016

I cried for weeks when we first found out about my husband's recurrence 5 years after his kidney was removed.  We are married for 34 years and I can't imagine my life without him.  We tried IL2 which was awful for him and did nothing....now he is on Votirent and doing very well..some skeletal pain and lots of fatigue, but it is working.  Good luck to your brother, and you as his rock. 

Dan6652
Posts: 25
Joined: Oct 2016

It's been 2 months and I'm still crying. His wife has been by his side the entire time along with his son. I know they are as heartbroken as his 2 sisters and mom though. He left rehab on on Monday and is now on his 2nd day of radiation for the reminant of his spinal met at T-11. This spinal surgery has really taken a toll on him. I know what you mean about imaginig life without them. My mom is 86 and I have one sister, one niece and one nephew. I am not married. Our family is very small and close. I know my mom won't live forever and now that he is sick I feel like I'm close to losing half of my famIly. Life is so hard. How long has your husband been stage 4? my brothhastily also go on Votrient following radiation. Best  of luck to you and your husband and thank you for your reply.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

can be very effective. I've had multiple courses on several vertebrae, several ribs,  both shoulders, both femurs and along my spinal cord from base of brain to T-2, twice.  I am currently painless with complete independence. I play my guitars, golf, walk, work in the yard, and am only limited by some minor managable sensory and motor deficits. Not a bad price to pay. I think most people would have been dead. I'm having a hell of a good time being active. Sometimes not so much, but I always seem to make good comebacks. Regardless of how hard my cancer has tried to take me out. All I can say is keep the faith and keep moving.

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