Bad Nights

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bradyr
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Location: Redmond, WA

Re: Bad Nights

Postby bradyr » Wed Jun 18, 2008 11:03 am

neither of you should at all like a failure - you are facing a very bad situation and you are doing the best you can.

mine and sharon's concerns is you are wearing yourself out.
Last edited by bradyr on Wed Jun 18, 2008 3:59 pm, edited 1 time in total.
bradyr
DX 2/07 mets liver/bone/brain/spleen
Foxfox/avastin 3-6/07
bone mets 5 times
xedada 9-7/07
Folfri 1-6/07
GammaKnife brain lesion 1/08
SIRT Spheres rlobe 7/08 llobe 8/08
cyberknife brain 10/08
Brain surgery 1/09
Vebctibix 1-4/09

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bradyr
Posts: 1138
Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Bad Nights

Postby bradyr » Wed Jun 18, 2008 11:12 am

for those posting there is another thread you shoudl read on her mother's condition, just so we don't revisit the same ground with recommendations she is already doing...

viewtopic.php?f=1&t=3707

the net/net is after 30 something treatments, she has very serious inflamation of skin in her private areas and the doctors were very slow in giving her pain killers. She was experienceing 7-9 level pain and clearly need to be able to take sufficent oxicodne to keep this under control.

but the folks are new to doing this and afraid of overdose and later dependancy. They were waking her mom at night to take the pills which was working find - but a couple of times they didn't wake her up and instead the intense pain woke her up. since it takes about 30 mins for the pill to take affect, that was 30 mins of agonizing pain.

so if the specific question is on can she take more, I responded that she shoudl take as many as needed (I believe the doctor will concur)
bradyr
DX 2/07 mets liver/bone/brain/spleen
Foxfox/avastin 3-6/07
bone mets 5 times
xedada 9-7/07
Folfri 1-6/07
GammaKnife brain lesion 1/08
SIRT Spheres rlobe 7/08 llobe 8/08
cyberknife brain 10/08
Brain surgery 1/09
Vebctibix 1-4/09

momsCancer
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Re: Bad Nights

Postby momsCancer » Wed Jun 18, 2008 6:04 pm

I really think she is having spasms and not constipation. If she were blocked, I would think she would constantly hurt until the blockage was released, especially continual stomach pain. Her pain and feeling of needing to go comes in waves. She has diarhea each and every time she goes to the toilet at least 30 to 40 plus times a day. When it climaxes usually in the last hour before she can recieve her next dose of oxycodone, her pain goes off the charts. She either starts shaking uncontrollably and if someone isn't in the room, yells for help or she loses her head and starts racing around the house out of her head not being rational. At this point she starts hunting the pill bottles for something more to take to make her go to the bathroom.

When we got to radiation, I didn't think she'd meet with the radiologist so I asked the front desk if I could possibly ask her a quick question. They said to flag down the nurse (the one we don't like) and ask her to speak with the doc. Anyway, the radiologist appeared before the nurse. Weird, I don't know whether to say something or wait so not to cause a rift for not following the chain of command. I asked her if I could have a couple of minutes, she obliged. She listened to me describe the pain, my thoughts on what's going on, and the information I received from Joy on-line about the spasms. I was very calm (more like half dead from desperation and lack of sleep) as I explained. She looked agitated and said take her to the ER. I think she thinks I'm just too high maintanance and is ready to pass us along. I asked her if we could try Clonazapam like Joy used for spasms. She said they don't prescribe that for radiation patients. She didn't say you're on a wild goose chase or yes spasms could be the culprit. She's just ready to wash her hands of us. At that point the radiation technician walked mom past us to put her in a room to see the radiologist. If I'd known we were going to meet, I wouldn't have tried to speak to her beforehand. Mom and I waiteed in the examination room for 30 to 40 minutes. She finally came in and said that it sounds like she has something called tenesmus which causes a false sense of needing to go and anal spasms. She said she didn't know why she didn't think of it before. She would prescribe proctofoam to inject into her butt and that it would help combat the spasms. She didn't talk to me unless I directly spoke to her. She didn't say anything about the conversation we had in the hallway, it was like it just dawned on her that maybe it's spasms caused by tenesmus. It's just a completely weird feeling, but she gave mom a hug before we left which I'm grateful. She says boost radiation starts tomorrow and that mom should experience immediate relief. Mom's hanging on those words which scares me b/c Belle has posted her relief did not come for 2 weeks after radiation stopped. 8 more radiation hits.

I did call the onc nurse to see if she'd prescribe the clonazapam but she called during the radiation when I have to turn off cell phone due to radiation machines. She did not leave a msg or call back. I'll try her again tomorrow if this other stuff doesn't work. By the way proctofoam is put directly inside her bottom. She can't do it and the first time I really had a hard time finding the hole b/c of the hemmoroids and swelling. (tmi, I'm sorry)

I'm scared to call more than absolutely is necessary b/c they are treating me like the boy who called wolf too many times. This afternoon mom woke up with extreme pain, she was shaking uncontrollably and yelled for help. It was 20 minutes until time for next dose of oxycodone. Dad had her swallow one pill and chew the other one up for quicker relief (thanks Bradyr) Dad and I agreed that we'd up the dose without calling the doc to 2 pills every 3 hours instead of trying to wait 4 hrs.

I'm just not giving up! Each and every time she takes a dive from whatever, I'll keep trying to find a better way. I just can't accept that nothing can be done. thank you, thank you, thank you.

Oh, my friend is giving me numbers to call for in-home help. It's hard to committ to doing that, letting a stranger come. Another friend is checking on a cleaning service. This friend came on Sat. and cleaned the bathroom (so awesome) but with all the accidents, I'm scared we are all walking around in ecoli. I clean it with 409 but I just don't have the energy to do a deep clean which I think it needs. A friend of Mom's says she wants to help and is coming on Saturday. If it works out maybe she'll help on weekends to give dad and I a break.
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

PammySue_51
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Re: Bad Nights

Postby PammySue_51 » Wed Jun 18, 2008 6:16 pm

I think the shot you're referring to is Neulasta. I had it once and experienced very few problems. However, I know some people who say the bone pain from Neulasta is worse than their treatments.

I'm sorry. That's all I can comment on here because in know zilch about radiation.

God bless you for taking such good care of your mom.
Pam

I Peter 5:10-11

Diagnosed 9/06 Stage IV, 19 mo. chemo, now out of chemo options except for possible clinical trials. 9/3/08 First of two Sir-Spheres procedures.

*Faith is the wind that blows the sail of our ship to the desired destination."

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

Re: Bad Nights

Postby Joy » Wed Jun 18, 2008 7:43 pm

Damn it tenesmus is a well known side effect of radiation to the rectal area it is listed in the medical literature.

I can't believe a nurse would say quote "why didn't I think of this before".....BECAUSE YOU ARE AN IDIOT :roll:

---------
Your Mom is almost finished with treatment.....I sure do hope she feels better when it is over.

hugs and prayers,


Joy
Joy
Stage III rectal cancer 2 nodes out of 19
LAR January 4th 2006
2 rounds of FOLFOX
28 continuous radiation with continuous 5FU
6 rounds of FOLFOX
NED

Sally1898
Posts: 238
Joined: Sat Apr 19, 2008 2:05 am

Re: Bad Nights

Postby Sally1898 » Wed Jun 18, 2008 10:53 pm

I had bone pain from radiation and chemo. Best explanation I could get was that both mess with development of cells in the bone marrow. On purpose, to cut short whatever allowed those cancer cells to start developing. I frequently spiked a fever first, then came the bone pain. Onc. advised to see it as a sign that chemo and rads were actively fighting the cancer . . .
Dx:St. 3 rectal ca. on 1-8-98 at age 31. Perm. colostomy,friends refer to it as 'Pedro'.Favorite sentiment:Poop happens!!!

momsCancer
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Re: Bad Nights

Postby momsCancer » Thu Jun 19, 2008 2:03 pm

Just want everyone to know that last night was better. Since at least last Saturday night, as you've read, nights are bad. She's up every 20 to 30 minutes going to the bathroom with terrible pain and anxiety which seemed to build to out of control proportions as the night drug on. It left her totally exhausted and discouraged by morning. I don't think the symptoms are necessarily worse at night than during the day, it's just more frustrating for mom at night because she wants to sleep.

Yesterday, the radiologist prescribed some foam called protofoam to relieve the pain from spasms (she nonchalantly said as she wrote the prescription, I don't know why I didn't think of it before. It would not have even occurred to her then if I hadn't been so insistent, what's wrong with these docs, shouldn't they be more agressive in treating the symptoms to relieve pain. If one thing doesn't work, try something else?)

Anyway, the combination of the foam and increased dosage of pain meds worked, and she slept for longer stretches of time, 2 to 3 hours at a time, YES!!!!!!!!!!! When she woke up she said that last night was so much better, YES, YES, YES!!!!!!!!!!!!!!!! :)

Okay, so this was last night;
6:00pm - Anxiety pill - it also helps with sleep
7:00 pm - 2 pain pills - after an hour when med is in full force, we conquer the bathtub
8:00 - Protofoam - pain pill has got to be really working to handle this
9:00 - 11:35 - slept soundly zzzzzzzzzzzzzz
11:40 pm - Woke Mom for 2 Tylenol for temp 102.7, 2 pain meds and back to sleep
1:10 am - temp coming down - 101.46 and bathroom trips, pain, and anxiety increasing as nights before
1:45 am - Protofoam
2:30 - Tramadol (for Inflammation), Lorazapam (for anxiety)
3:00 am - 2 Pain Pills
3:00 - 6:30 - Blessed Uninterrupted Sleep ZZZZZZZZZZZZZZZZZZZZZZZZ
6:30am -2 Tylenol - temp 100.3 and falling
6:30 am - 2 pain pills
6:30 - 8:00 - And More Sleep zzzzzzzzzZZZZZZZZZZZZZZ
8:00 - She conquered the tub - getting clean for radiation
9:00 - She ate toast (she has not eaten solid food since Sunday morning only clear liquids)
9:00 - Levaquinn - Antibiotic for infection
9:00 - Flucanazole - Antibiotic for thrush (yeast in mouth)
9:00 - Lorazapam - Anxiety (to help handle today's radiation at 10:30)
9:00 - Tramadol (Inflammation)
9:00 - Prilosec - (Heart Burn which is a major problem, how can that be she's basically not eating, water is causing heartburn, go figure)
9:15 - I had a shower, YIPEEEE - Mom says that as a patient she deserves a hygiene conscience caregiver - I guess 3 days without is long enough, I told her if she gets lucky I might even brush my teeth, but that's all no shaving, make-up, styled hair, etc....that's where I draw the line.

9:30 - off to radiation
9:45 - 2 more pain pills

Bottom line, there were no out of control moments, pain was managed throughout the night and we both slept much better. She woke up so encouraged, what a great feeling!
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

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bradyr
Posts: 1138
Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Bad Nights

Postby bradyr » Thu Jun 19, 2008 2:08 pm

this is great new!!! - it's too bad it too so long to start getting this under control. no help to the doctors, as you said.

you've done a remarkable job caring for your mom and your mom has been a super strong trooper thur a horrible time. I hope it only gets better from here.

you're still in my prayers.
bradyr
DX 2/07 mets liver/bone/brain/spleen
Foxfox/avastin 3-6/07
bone mets 5 times
xedada 9-7/07
Folfri 1-6/07
GammaKnife brain lesion 1/08
SIRT Spheres rlobe 7/08 llobe 8/08
cyberknife brain 10/08
Brain surgery 1/09
Vebctibix 1-4/09

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

Re: Bad Nights

Postby Joy » Thu Jun 19, 2008 2:38 pm

Oh this sounds wonderful, I am so happy for your Mom.

You my dear are a daughter "extraordinaire"....you never gave up :D

You deserve a great big hug ( )

Joy
Joy
Stage III rectal cancer 2 nodes out of 19
LAR January 4th 2006
2 rounds of FOLFOX
28 continuous radiation with continuous 5FU
6 rounds of FOLFOX
NED

momsCancer
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Re: Bad Nights

Postby momsCancer » Thu Jun 19, 2008 4:22 pm

Quck question, mom's stomach is swollen. I think it's been a little swollen for a while but it seems more swollen this afternoon. She says it's tender when pressed, but not major pain. Any ideas?

This is week after chemo, I'm sure nadir time. Also, she had that shot that goes to bone marrow to up white blood cell count last Friday. Radiation today, boost started where they are targeting tumor. Besides the toast this morning, she's not eating. I don't think she's dehydrated. She's worried about phenomonia b/c she's staying passed out in bed. Dad thinks she's moving around enough due to the trips to the bathroom. She goes to have PICC line flushed tomorrow, I will get the onc or at least his nurse to check it out. Could the meds be making her stomach swell, should I be worried?
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

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bradyr
Posts: 1138
Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Bad Nights

Postby bradyr » Thu Jun 19, 2008 7:40 pm

could just be distended from gas - particularly if she's not that active. - but your father does say she's moving, but perhaps its not enought.... but also remember the pain pills slow down the GI track. when I take a lot, of pain pills, I get a bit of gas, but you can't take my situation and compare it directly to her.

but remember we're not doctors, so I really don't know and I'm not too comfortable with your mom's track record on diarriha suggesting anything here -sure don't want to make that worse.
bradyr
DX 2/07 mets liver/bone/brain/spleen
Foxfox/avastin 3-6/07
bone mets 5 times
xedada 9-7/07
Folfri 1-6/07
GammaKnife brain lesion 1/08
SIRT Spheres rlobe 7/08 llobe 8/08
cyberknife brain 10/08
Brain surgery 1/09
Vebctibix 1-4/09

momsCancer
Posts: 51
Joined: Mon May 26, 2008 11:53 pm
Contact:

Re: Bad Nights

Postby momsCancer » Fri Jun 20, 2008 2:25 am

I'm feeling parnoid that somethings wrong. She's not coming to much, doesn't make sense alot. When in pain, she was up and fired up or something. She is totally lathargic and I don't know obviously drugged. The whole point is to keep her at pain level 2 or 3, but it's scaring me. I think she has mouth sores and her throat is swollen, hard to swallow. She had it last chemo at the same time. But with her so drugged, she's making really weird sounds, I don't know, like struggling to breathe but then again, maybe just weird snoring. I'm so tired, I might not be thinking straight. I thought about calling a friend over to observe.

I just heard noise from the kitchen, ran in there, and she's shuffling around looked at me like "What?" She was cohenrent, talking fine. I asked her if her throat was swollen, she said no, not really. I told her that she needs to get back in bed, she's not steady on her feet. As she was halfway back, she stumbled by the fireplace. I was right there. I told her she is scaring me to death, getting up without calling for help. She said it's hard to call for help, she thinks she can do it by herself. She said she'll try to do better. Most importantly, she's making sense. I brought her med and did the Proctofoam. My mom loves chocolate so I took her a minature butterfinger. She hasn't eaten solid food besides some toast yesterday morning since Sunday morning. She took a couple of nibbles, she savored the taste and then put it down.

I probably need to take an anxiety pill and chill out. I just would never forgive myself if I messed up or didn't catch something wrong.

She stays out most of the time, when awake in bed, her eyes are droopy, half open. She talks sometimes but doesn't make sense. Off the subject, she is extremely swollen in her private area. Is there anything to help with that? That's the main thing bothering her now from radiation.
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

momsCancer
Posts: 51
Joined: Mon May 26, 2008 11:53 pm
Contact:

Re: Bad Nights

Postby momsCancer » Fri Jun 20, 2008 2:27 am

About the swelling, if it were an ankle I'd elevate it and ice it. Elevation is not possible, but should I keep ice on it?
MOM has Stage 2 Anal Cancer on chemo (5-FU and Mitomycin-C) for 6 weeks. Looking to vent and give/receive support. My blog address is;

www.onecrazeemommy.blogspot.com

I should change the name to one crazee daughter, I think.

Mike in Maine
Posts: 23
Joined: Wed May 28, 2008 10:05 am

Re: Bad Nights

Postby Mike in Maine » Fri Jun 20, 2008 2:13 pm

Stay strong, you will get through this soon. Your moms symptoms will get better and things will get easier.
By the way, since she loves chocolate, would some "not very hot" - hot chocalate work for her to drink?!
My mother - 66 yrs old, DX 04/2008, stage IV rectal cancer with mets to liver (7) and lung (1). 3 weeks radiation x 2 weeks Xeloda. Starting Folfox/Avastin 06/16. No resection planned.

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bradyr
Posts: 1138
Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Bad Nights

Postby bradyr » Fri Jun 20, 2008 7:12 pm

yeah - you may not notice it yet because it's happening little by little - but things are getting better - they are much better than a couple of weeks ago. I know your mom is still uncomfortable, but I hope she notices that things are improved.
bradyr
DX 2/07 mets liver/bone/brain/spleen
Foxfox/avastin 3-6/07
bone mets 5 times
xedada 9-7/07
Folfri 1-6/07
GammaKnife brain lesion 1/08
SIRT Spheres rlobe 7/08 llobe 8/08
cyberknife brain 10/08
Brain surgery 1/09
Vebctibix 1-4/09


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