One patient with glioblastoma still alive nine years later
by Vhonda on Mon Dec 06, 2010 12:42 AM
Hello, my father had a distal pancreatectomy and splenectomy done 3 weeks ago. There were also some lymph nodes that were removed. The pathologist did state that there were clean margins on the tissue that was removed. Which is very good news, but that the tumor itself was very large and he had a hard time locating the actual lymphs because the tumor had encased them. Dad was in CCU for 3 days and a total of a week and a half in the hospital.
He had several set backs while in the hospital, the main one is stomach pain. He feels nauseas and on the verge of vomiting at all times. He lost 21 lbs in 10 days because he was not able to eat. My question is, has anyone or can anyone give me some idea about post surgical recovery? Is nausea and a large weight loss common? He is still on Morphine for pain and I am not sure if this is the reason for the nausea. His pain doctor also put him on Reglan for his stomach but that does not seem to be giving him any real relief. I am very concerned with his recovery. It does not seem to be going as well as expected. We were told that he would start chemo 3 weeks after surgery, but I don't see how he will be able to.
Any information would be most appreciated.
by squand on Mon Dec 06, 2010 01:39 AM
I had qhipple on july 9th and weight loss of 65 lbs,I had a hard time trying to eat and gaining weight until the 8th week, things changed little by little and now I can't stop eating.I also was supposed to start chemo 4 weeks after but didin't until week 12, thatshow weak I was and of course loss of weight,I am now staying around 132-134..
It is a long haul but be patient -these people here will help you wiht all there knowledge and caring, they are a great bunch of people..
by barb1214 on Mon Dec 06, 2010 02:38 AM
My friend had the same surgery, distal and splenectomy last July 5. She had clean margins but some invasion of the portal vein and two positive lymph nodes. The doctors were able to resect the vein but graded her cancer as stage 3.
She also had some setbacks after surgery. She was initially in the hospital for 8 days. Went home for 2 and started vomiting. She had developed a pocket of fluid and was readmitted to the hospital for another week.
After surgery, she lost 17 pounds. (she was a small to beging with). After about 7 weeks she had regained 10 pounds. She felt very nauseous initially. She found eating very small amounts every 2 hours helped. She ate a little every two hours whether she felt like it or not.
By week 5 or so, she was able to go for 45 minute walks with me but at a slow pace. She started chemo at week 7. Right now, she's just about finished 6 weeks of radiation. (only two left) She's finished 5 rounds of chemo and will have one more. She's been receiving Gemcitibine 1 time/wk, 3 wks on, one week off/round. She felt pretty well for the first 3 rounds of chemo. Radiation started after the 3rd round of chemo. It was given 5 days per week and chemor 2 days per week at a lower dose. By the 4th week of radiation, she was losing her appetite and feeling great fatigue. She has started to lose weight again and is down about 4 pounds at this point. Hopefully, during this upcoming 3 week break she will start to feel better. My friend was a very fit healthy 54 year old before this diagnosis.
I wish your dad and you all the best.
by Vhonda on Mon Dec 06, 2010 11:09 AM
Thank you Rick. I have been reading a lot of your posts and that is actually the reason that I decided to join.
We knew that this was a big surgery and would take time to recover, but I think we underestimated the toll it was going to take on him and his body. It is very hard to watch such a strong man go through this and become so frail and weak.
I know in time that this will get better for him, and that it will be a long and winding road. I wish you all the best in your journey with this dreaded disease. Thank you again for the feedback.
by Vhonda on Mon Dec 06, 2010 11:17 AM
Barb, thank you for all the information. It sounds like your friend and my father are going through the same thing. My father can not have radiation treatments due to a previous cancer that 'used' up all of this radiation limit. According to the doctor he didn't seem to think that it would matter much. Not sure if that is a good or bad thing.
My father right now is pretty much stationary. He sleeps a lot. He does force himself to eat even though he has no real appetite. We have started him on Ensure shakes to try and boost his calorie intake and give him much needed protein. His biggest complaint is the nausea and abdomen pain.
Did the doctors wait to start her chemo treatments until she had more strength? My concern is holding off on it, whether or not that will impact his treatment of the cancer. To go through this horrible surgery and have it come back before chemo can start is a scary thought to us.
I wish your friend all the best in her recovery. Thank you so much for the imformation.
by barb1214 on Mon Dec 06, 2010 05:48 PM
My friend's doctors wanted her to have recovered form the surgery before starting chemo. They wanted her drainage tube removed (she had it in for about 2 weeks after her second admission to hospital) and for the incision to heal up. I know this is a rough surgery, but it is easier than the Whipple that most people on here have had. My friend looked so sick initially but she really looked like herself again by about the 5th week. No one would no there was anything wrong if they didn't know. Your dad is still pretty early in the process, so hopefully he'll start to feel a bit better soon.
This is a really agressive cancer and I know how scared you all must be. But if your dad starts getting too sick from chemo because he's not strong enough, they will likely delay the treatment. My friend has had 2 delays. One because she was running a fever and another because her white cell count dropped too low.
How old is your dad? I know my friend found walking around a bit did help her digestion but she is on the younger side.
I hope your dad starts to feel better soon.
All the best.
by Vhonda on Mon Dec 06, 2010 10:28 PM
My father is 62. Basically a very fit man. He was walking about 3 miles 3-4 times a week prior to the diagnosis. He always maintained his weight, never drank or smoked. And the doctor did recommend that he start to get out and do some walking again to try and build his strength back up.
His incision site actually looks really good. In fact we had a follow up appt today and they removed the steri-strips today. According to the doctor he is actually doing very well with his recovery. They did weigh him and his weight was up a few pounds, so that is good news. He has an appt with the medication oncologist this Thursday so we will find out at that time when we can expect him to begin that treatment. His surgeon even said today that dad may be able to have a little radiation directed at the site to make sure to kill any remaining cells that may not have been completely removed from the SMA.
Just hearing the information today that he was on the right track and doing well made a difference. His mood improved after that and he actually was laughing and joking a bit. That was so wonderful to see. Sometimes just having that little bit of knowledge can make all the difference.
Thanks again Barb, I have found this site to be so informative and such a comfort to know that what we are going through is very normal.
by barb1214 on Tue Dec 07, 2010 12:10 AM
I'm glad to hear that your dad is perking up a bit and has gained some weight. That's good that he was fit before all this started. And 62 is not very old either,( my friend is 54). I'm sure it will help with his prognosis.
If he is able to get outside and walk a bit, it will probably lift his spirits as well as help with his strength. It's so hard to keep a positive attitude but I'm pretty sure it helps the healing process. (Hopefully, you live somewhere where it's a little nice outside. It's freezing where I live!)
My friend was pretty depressed initially. She is a single mom to an 18 and 20 yr. old. But about 2 months into all of it, she said she had come to terms with it at this point anyway, and she wasn't going to spend whatever time she has left on earth being sad. I know it still gets to her because she said she has trouble sleeping or staying asleep. She feels the anxiety when everything is quiet. But otherwise she's been participating in life and keeping busy.
Your dad is lucky to have you. Keep in touch.
All the best,
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