Radiation getting Unbearable

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

Re: Radiation getting Unbearable

Postby Joy » Wed Jun 11, 2008 8:37 pm

I was "turned in" by the radiation technician because I wasn't telling the radiologist how much pain I was in. Boy oh boy did I get a talking to by the nurse and the doc.They were so upset with me because I was "suffering in silence". I get tears now when I remember just how kind and compassionate they were to me.
I am so grateful to them because I know I would have not been able to finish my treatment without their care and support,

Your Mom deserves better treatment.

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

Lou
Posts: 74
Joined: Thu Feb 14, 2008 11:51 am
Location: Atlanta Area

Re: Radiation getting Unbearable

Postby Lou » Thu Jun 12, 2008 9:14 am

Hi,
I am sure your radiologist's job is a tough one but, I agree with others they need to manage your mom's pain better.
I cannot really add any suggestions, but I wanted to add support to you.
Your post just hurts my heart. I cannot imagine seeing anyone I love in such pain. Especially if there is something that can be done to ease the pain, even a little.

Godspeed to your mom getting through this!

Lou
diag: 2-2-08
LAR 2-25-08
w/ temporary ileostomy
Tumor found early because of family history w/polyps and luck (feel extremely blessed)
reversal (CANCELLED!!!)
Breast Cancer DX:6-20-08
Lumpectomy 6-25-08
chemo & radiation done 12-08
Ileo takedown 2-09

lorrainem
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Re: Radiation getting Unbearable

Postby lorrainem » Thu Jun 12, 2008 12:41 pm

This doesn't seem right. My doctors have done anything in their control to make me feel comfortable. They used to joke...one would blame the other for my pain, but whichever I was talking too would take care of my complaint/pain/issue.
I was wearing Depends near the end, if your mom is willing, maybe that would help.
Either way, now is the time for you to speak up on her behalf. Good luck!!! If you don't get the statisfaction you are looking for, bring it up with the oncologist, perhaps he could intervene too.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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bradyr
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Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 1:06 pm

lets us know how your talk with this doctor goes. We're really hoping the doctor will come to her senses and step in to help your mother here after you talk to her.

if there is another radialogist in the practice, I would ask to switch right now....
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: Radiation getting Unbearable

Postby momsCancer » Thu Jun 12, 2008 2:23 pm

Mom insisted on not going to radiation this morning, but went anyway. I toolk her to the back waiting room to wait her turn while I went to talk the doc/nurses. The nurse at the front said all the docs are gone until Monday. I printed off this post and all the comments. I highlighted all the suggestions and asked why she couldn't have something stronger than over-the-counter. The nurse said there really isn't anything more than over counter sprays and creams. They won't give the silver prescrip b/c its to much trouble to get off and b/c if it won't come off radiation burns will be worse. I called the onc head nurse but she didn't call back before radiation. The rd nurse called the onc nurse and both gave more over the counter suggtions. The rad nurse had the nerve to tell me that she's used some of the suggested remedies for her sunburns which is essentially just what mom has. What she doesn't get is that I totally lose all patience and respect for her when she nonchalantly compares a sunburn to the radiation burns Mom is experiencing. Anyway, I wrote down all the suggestions and called dad to ge get it. The technician and a nurse cornered mom back behind the radiation sheet to see if she was as bad as I was loudly complaining about in the front lobby. In tears she said its bad. They told her its her choice if she wants to not be radiated until she talks to the doc next wk. I'm really proud of her b/c she said she didn't want to skip,just needs something to numb it. As we head home, dad ran to the store and got a sitz bath, Domeboro soaks, and Dermoplast spray. He also got a fan to let her spread eagle in front of. I spoke to the onc nurse and she said that she'll examine her tomorrow after she's unhooked from the 5-FU chemo pump. I trust her and feel like she cares and will help. In the meantime, gave mom a sitz bath with the medicated soaks which helped some and use the spray which burned a little in the folds of her skin but again helped. She's asleep for now. Is there anything other than silver prescrip stuff which they absolutely won't prescribe! just anything strong enough to numb it but not make radiation worse. It's just hard to believe there's nothing more. 10 more radiation hits to go.
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
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Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 2:51 pm

just horrible. As several of us have said, beyond the perscription cream they should be giving her some form of pain pills such as oxicotin or oxicodone (fast or slow acting of the same thing). As several of have said, our radiation oncologist have offered this when we've been in pain. at least a 4 mg every four hours would take the edge off of this. Damn it cancer patients have a right to pain pills.

I also find them drawing an anology from Untraviolet radiation burns and X-Ray/Gamma Ray burns.

Please talk to your mother's chemo oncologist and explain the situation and ask if she will perscribe pain pills (and/or the cream) today (at least enought for the weekend until the other docs are back) and explain to her your dissatisfaction with the radiation oncologist.
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
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Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 3:14 pm

this is just a web site at random - just to prove to your cruel doctor that pain medication is typical for pain caused by radiaiton treatment... check out the last paragraph on this link...

http://www.lexmed.com/medical_services/ ... ffects.htm

I'm sure I can find 100 more - the point is that if this woman wasn't a quack, she'd be concerned with her patient's pain level and perscribe something.

by the way, I don't care if they off today, you can call there on call number and ask for the pain medication. this is approaching malepractice in my opinion.
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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Joined: Mon May 26, 2008 11:53 pm
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Re: Radiation getting Unbearable

Postby momsCancer » Thu Jun 12, 2008 3:22 pm

I don't know whether to wait until tomorrow or call for the pain pills now. Earlier today I asked on scale of 1-10 where her pain was at, she said 9. I think at the radiation office they have wrote me off as the loud-mouth, unable to cope daughter. I was calm when talking to them over a week ago, I'm pretty beligerent now. I've been speaking for mom more and more at the doc appts and with the nurses. She just can't talk much about it all with losing control and breaking down in tears. She can't stand that loss of control so I try and communicate her physical, emotional, mental state by what I've seen and by the little descriptions she gives to me ( little pieces at a time) Anyway, the docs stress her out and they are definitley beginning to stress me out too. Should she suffer through or take pain pills and would taking the pain pills over the next 2 to 21/2 weeks of radiation mean she's not able to handle pain or there be a problem with addiction afterwards. I don't know. I'm mad but their responses makes me think that maybe we're not sucking it up like the others. No one else in the waiting room seems to be as frustrated as us? We feel alone and misunderstood at the radiation appts.
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
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Re: Radiation getting Unbearable

Postby momsCancer » Thu Jun 12, 2008 3:26 pm

That's it, I just called the onc for pain pills. She's really hurting and we've waited more than too long! Hopefully she'll call me back today!
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
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Joined: Mon Apr 30, 2007 7:19 pm
Location: Redmond, WA

Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 3:45 pm

don't worry with addition - it's not likely to get addicted in 3 weeks.

a 9 on the pain scale is incredable. I only been at that level once. a 9 is a medical emergency.

even if she has to take enough that it knocks her out - at least she gets some rest for a few hours. she can decide how many she wants to take - deciding pain level vs remaining alert.

typically, one way to handle this is most of the time take enough to take the edge off, but no so many that you can't think (bringing the pain level to something between 2 and 5) and then at night or other times when the pain is just been going on for too long, up the dosage and bring the pain level down to 1-3 for a few hours. that way she's not always knocked out.

but encourage her to take as many as she needs - she is not going to get addicted - that takes months. pain like this what these pills are for and she she take as many as she needs.
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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JessiLeigh
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Location: Bel Air, MD

Re: Radiation getting Unbearable

Postby JessiLeigh » Thu Jun 12, 2008 4:34 pm

First of all, I want to say that I am praying for your mother. Having to gom through treatment is bad enough, but to be in that kind of pain too?? I wouldn't worry about pain med addiction. I was on dilaudid after my perforated bowel surgery for about 2 1/2 months. When I slowly came off of it, I had mild withdrawls. Anyway, that's the least of her worries. I would also get another oncologist right away! There is no need for your mother to suffer like she is. If she has to miss 1 treatment or wait another week or whatever, it'll be worth it to have caring physicians and their staff on HER side. My doc and his team are wonderful and they make sure I am ok everytime I see them. Let us know how things go.....
Jessi 31 yr old Female
Bowel Perforation Dec 2007
Dx Dec 2007 Metastatic Colorectal Cancer
Liver Mets
Current Chemo: Folfiri + Avastin
NED as of Oct 8, 2008
As of Jan 2009, no more Folfiri.
Now liver mets are coming back, surgery may be next step.

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

Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 4:49 pm

I agree with getting another doctor....

but there are some complications with moving radiation oncologist once you are in treatment - not as easy changing chemo oncologist - they have a particular "program" setup on the treatment machine (particular alignment of her body based upon the tattoos and a particular aligment of the machine. they may also have a hard pillow like aid that holds her legs in postion or other such piece of styrofoam, etc. To move to another doctor within the same practice that uses the same machine is not a problem, but these nurses sound as bad as the doctors, so you might be looking at a different treatment facilitiy.

that may requrie some coordianation to transfer the program. I'm not sure if they do that or if the new doctors do a new simulation and start over (not with all the treatments again start over - I mean start over with figuring out where to send the beam for the remaining treatments. But it can be done, I just want to point out that is is a little more than trivial.

another option is to continue with treatmetn on that machine and facility but see another doctor from another treatment center. in the case, which is somewhat extrodinary (you hate your current doctor becuase she is the anti-christ when it comes to worrying about your mother's pain level, and the doctor won't compromise) then I think the next doctor woudl likely be flexible would help you work this out.

but, I guess this is a lesson to everyone about to undergo radation, as much as you may like your doctor, have a frank discussion about they opinion of how pain managment should be done - if you don't hear them talk about this as #1 concern, vote with your feet and go find another doctor.

there is no reason for a cancer paitent to have to suffer any more than necessary. any doctor who is more concerned with there convience of gettting a cream off instead of hte patients pain level should have their license taken away.
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

lorrainem
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Location: NY

Re: Radiation getting Unbearable

Postby lorrainem » Thu Jun 12, 2008 6:39 pm

I hope by now you've received a call from her onc and gotten some drugs. I know a lot about Oxicontin though I've never taken it. It was formulated especially for cancer patients so that pain relief was level and available, my husband was involved in the formulation. Unfortunately I also know a lot about drug addiction. I have resisted drugs myself in the past, with the thought of dependency that I've seen in others. With cancer, I begged for those drugs. Have your mom read here. We've all taken our share of painkillers without dependency, so you have fine examples for her.
Have her keep in mind that taken as prescribed the drugs are safe. If she is on long term for any reason, the doctors have "weening" experience. It's easier than what she's going through now.
Prayers coming your way.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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

Re: Radiation getting Unbearable

Postby bradyr » Thu Jun 12, 2008 6:50 pm

thank your husband for working on oxicotin. I use both it and oxicoden. they are a blessing. My leg pain is cronic and without medication varies from a 2 to a 6 or 7. Particularly at night, wasn't able to sleep. I use the short acting Oxicodone during they day - I take maybe 2 or 3 a day. Unlike other pain pills, they don't make me sleepy, I can still think. (I design software, so I need to be able to concentrate). And this amount of pills keeps my pain down to around a 2, which I can tolerate.

At night I take one or two of the Oxicotin, depending upon how painful the leg is. They let me sleep at night.

This drug has been a godsend - it lets me live pretty much a normal life without pain all the time.

I don't feel dependant upon them. There have been some good days where my leg pain has been bettter for a prolonged period of time (sometimes a couple of days) and during that time I take no pain killers and I don't feel any withdrawl type symtoms. I've been on oxicotin/oxicodone now for almost a year and I don't feel I've crossed into dependancy yet. (But say, even if I do, I feel comfortable that this isn't like cocain or heroin)

there is no reason for people with cancer to suffer worring about drug dependancy - that seems to be the least of our problems..... <G>
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

GO BLUE Girl
Posts: 172
Joined: Thu Jun 07, 2007 9:04 pm
Location: Southeastern Michigan

Re: Radiation getting Unbearable

Postby GO BLUE Girl » Fri Jun 13, 2008 7:37 am

Maybe you can get her personal doctor to prescribe the pain meds. Personally I had good luck with sitz baths, really soft baby wipes and a prescription cream by my rad onc called----BIAFINE-- it is specifically for radiation burns and it is water soluable and washes off easy before the radiation tx and was very soothing. Beth


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