My dad was diagnosed with Stage IV colon cancer 11 yrs ago; 4 recurrances since and now mets to sacr

healynn

Hi, I am new to posting but have read posts over the years. My dad was diagnosed with stage IV colon cancer in 2001. He has had 4 recurrances since, has a colostomy, left kidney was removed and has a ureter stent in remaining kidney because of scarring from radiation. He has had all the radiation he is allowed. Biopsy in Jan 2012 confirmed a malignant mass on his sacrum. Surgery is not an option due to location. He has been on Erbitux weekly since. Also has been on another chemo infusion (unsure of name) he has had that every other week since last May 2011; hooks up on Wed and disconnects on Fri. He has had tingling in his left leg for sometime and thought it was a side effect from chemo. In March it started to get worse, he explained itas sitting on a golf ball on his left butt cheek, pain so bad he could not sit or sleep, just walk. He also explained it as a charlie horse down the backs of his thighs. An mri was done 5/8/12 and his oncologist stopped all chemo treatments and referred him to a neurosurgeon for spinal compression. On 6/7/12 he had a lumbar laminectomy from his L2-S2 and was told his pain should disappear except for at the incision site in his back. The charlie horse type feel subsided but the pain in his butt become worse than ever and his left leg swelled. Ultrasound ruled out blood clots. Once home pain was unbearable in his pelvis and left leg so we brought him to ER. They said he has lymhedema in his left leg and admitted him because his creatine was elevated. While there, dad disclosed that he has become incontinent with urine, unsure if he is with bowel since he has a colostomy. They scanned his bladder and he still had 500cc even after voiding. He now has a catheter in place and is scheduled for a stent replacement on 6/25. He can't feel that he has emptied his bladder completely which may be a side effect from laminectomy or from swelling. In the meantime he has a different oncologist since his regular one is on vacation. We love the one he has now, as the family we have not been told much of anything over the last year. This oncologist has spent a lot of time since Friday looking over my dads chart from the last 11 years, communicating with the neurosurgeon and with a neurosurgeon from the mayo clinic. However we have found out that he has mets to his sacrum and also scar tissue compressing his nerves. IV diaudid every hr and oxycontin and oxycodone have not helped much with his pain. Yesterday they started him on IV dexamethasone to reduce swelling of the scar tissue and also a fentanyl patch, oxycontin and oxycodone. He is unable to go home until pain is controlled and just hope to have him on oral dexamethasone, fentanyl patch and as needed oxycodone. Sorry for the long post just wondering if anyone is familiar with this...I worry our time with dad is limited, he's only 64 years old. Thanks for listening

Brenda Bricco

Wow, has your Dad been
Wow, has your Dad been through it! I don't have any advice but just wanted to say that your Dad is a pioneer/inspiration to those of us that are early in the fight.
It sounds like the new ocologist is interested in taking the best care of your Dad.
I am sure someone here can be of more help but I just had to comment and wish your Dad all the best and many years to come.
GOD's blessings to your family.
Brenda

healynn

Brenda Bricco said:

Wow, has your Dad been
Wow, has your Dad been through it! I don't have any advice but just wanted to say that your Dad is a pioneer/inspiration to those of us that are early in the fight.
It sounds like the new ocologist is interested in taking the best care of your Dad.
I am sure someone here can be of more help but I just had to comment and wish your Dad all the best and many years to come.
GOD's blessings to your family.
Brenda

Thanks for your kind words.
Thanks for your kind words. He is my hero and I love him so much! God bless you Brenda and always stay strong.

steved

Not identical but can understand
I have had a recurrence of my colon cancer within my pelvis and it too is pressing on nerves making pain relief one of teh main issues. It isn't a very common picture and my own is different from your dad's as it is not in the sacrum but on the side of the pelvis (and I'm only 39). I have found it hard to find others with similar stories but there is a very good blog by a chap with sacral mets at:

http://rob-pollock.blogspot.co.uk/

It is n't always cheery reading (as one would predict) but he has a very good attitude and many similarities to your dad's position.

Focus on quality now. Get your own head in order so you can spend time supporting your dad and enjoying being with each other. We all here worry our time is limited and we learn to make quality the focus for ourselves and those close.

There is support here for both you and your dad if he wants it.

healynn

steved said:

Not identical but can understand
I have had a recurrence of my colon cancer within my pelvis and it too is pressing on nerves making pain relief one of teh main issues. It isn't a very common picture and my own is different from your dad's as it is not in the sacrum but on the side of the pelvis (and I'm only 39). I have found it hard to find others with similar stories but there is a very good blog by a chap with sacral mets at:

http://rob-pollock.blogspot.co.uk/

It is n't always cheery reading (as one would predict) but he has a very good attitude and many similarities to your dad's position.

Focus on quality now. Get your own head in order so you can spend time supporting your dad and enjoying being with each other. We all here worry our time is limited and we learn to make quality the focus for ourselves and those close.

There is support here for both you and your dad if he wants it.

Thank you for the website, I
Thank you for the website, I will definitely look at it! I'm sorry for what you are going through, I cannot imagine what it is like to fight this disease, you are so young like many on these discussion boards. I'm only familiar with the supporting side. My dad has been so strong and positive over the years and only recently have I seen a break in his spirit (after he realized the laminectomy did not stop his pain). However today he looked really good and was alert and walked 200' with the help of his walker and a nurse! Thank you for pointing out quality, because I have just been so down because I would like him to have more time, he still needs to walk me down the aisle, see his oldest niece graduate high school next spring. But if we can get great moments and memories all the time then extra months or years will be that much of a bonus. I hope your pain is under control, is surgery an option for you? I'm so thankful for the support that is given here.

charliesangel

My Dad too...
Hi there,

My father has the exact same thing as your father, a met to the sacrum. My father's came back after 11 years also, however he was only a stage 2 all those years ago, and was clear for 11 years, and then he started limping and having excrutiating pain, and was diagnosed with a solitary rectal met to the sacrum. The S2 to be exact. He has now had cyberknife twice, which has helped immensely with the pain, he no longer needs oxycodone, fentanyl patches, lyrica etc... he found none of the pain killers worked, so cyberknife has been a mircale for us. Please note that we live in Australia and had to travel overseas for treatment.

Although we know he cannot be cured, as he went 11 years between the initial cancer, and the sacral met, we know what he has is slow growing so he can live a long time, however his quality of life is greatly diminished, as he can no longer walk without a walking aid and being on chemo on and off has taken it's toll. He has been in treatment for his sacral met now for almost 3 years.

Please feel free to ask if you need any information, as I have done a great deal of research into sacral mets.

Can I ask how come he can't have cyberknife to the sacrum? My father also reached his max the first time round with standard radition and they refused to treat him again, hence why we went overseas for the more targeted radiation.

x