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Bad Nights

Posted: Tue Jun 17, 2008 11:42 pm
by momsCancer
Nights seem worse. Diarrhea seems more frequent, not making it to the toliet more, more pain and anxiety. She's taking oxicodone 2 pills every 4 hours. At night, it's not enough. Right now she has almost an hour before next dose and pain level is rapidly increasing. Do I absolutely have to wait 4 hrs? She's straining due to constipation but there's frequent urgent diarrhea. Both are wreaking havoc on her butt. Tonight there's a little blood when she blots. I assume its hemmoroids from straining. She also complains about her bones hurting. She thought she dodged mouth sores this round of chemo, but tonight there popping up.

I'm reading on this forum about those at all stages continuing on w/ life, jobs, hobbies. How in the world is that possible? Is mom's side effects normal? Oh and I went to initial mts with all doc and went to chemo class where the msg was not to suffer through but let them know of all side effects and they will find med to relieve it. In fact the onc head nurse said the disease is tough, you don't have to be. But in the next breath in talking to me about the side effects says it is what it is.

Re: Bad Nights

Posted: Wed Jun 18, 2008 12:11 am
by NWgirl
My side effects from radiation were tough, but nothing like what your mother is experiencing. Of course I have a temporary ileostomy, which is a blessing during chemo/radiation as it all comes out in the bag - pain free, regardless of how bad the diahhrea is.

As for bones hurting, she's not getting that nulestra (sp?) shot is she? That causes a lot of people pain in their bones.

How many more radiation treatments does she have? Once those things are over with, you can start to begin the count down to when she will start to feel some relief. For me it was about 2 weeks after radiation stopped, but hopefully hers will be quicker.

That seems like a lot of oxicodone - I definitely would not increase it unless her doctor says its okay.

When I went through radiation, there would have been no way I could have worked (I'm a stay at home Mom). I LIVED in my Lazy-Boy recliner for weeks. I read about people that continue to work as well and I don't know how they do it.

I'm so sorry you and your mother are having to go through this. It breaks my heart every time I read your updates. I will continue to pray for you both.

Re: Bad Nights

Posted: Wed Jun 18, 2008 12:28 am
by Monique
I did not have to undergo radiation, but I found the side effects of chemo sometimes extremely painful. Thus, I am really, really sorry to hear about your Mum's side effects. When I was undergoing treatment my bowels were ravaged: constipation and ongoing diarrhea (sometimes as many as twenty - thirty trips to the bathroom), which resulted in some brutal fissures. I think that my bowel issues were the worst side effect of my treatment (and not to scare others, because certainly not everyone suffers from these things).

Frankly, the only thing that seemed to take the edge off the pain was long, epson salt baths and, after a few chemotherapy treatments, knowing what to expect and preparing myself for the side effects. For instance, while experiencing constipation, I would eat prunes or drink prune juice (however, another poster remarked that prunes gave him the trots, so if your Mum is trying them out, I suggest that she only do so in moderation). When I was experiencing relentless diarrhea, I would take Imodium in the morning to nip things in the bud. I also ate a very bland diet (Google "BRAT"). This seemed to help somewhat. Although these things didn't cure the symptoms, they did seem to help a fair bit.

I don't know if this will make your Mum feel any better, but I did not, and could not, continue with my hobbies, never mind my job or school. No way. By the way, I have a nurse friend who insists that no one's pain be more than a four out of ten. So, if your Mum is suffering more than a four out of ten, I would suggest you immediately speak to a doctor regarding pain management (as well as a nurse, as they are often even more helpful than the doctors and, in my experience, fantastic advocates). Also, my learned nurse friend said that the best way to treat pain is to treat it early, before it reaches a 4/10, otherwise it can be difficult subdue.


Re: Bad Nights

Posted: Wed Jun 18, 2008 12:39 am
by momsCancer
Belle, I'm so glad you are there, do you not sleep either. I would have had her admitted to hospital last Monday if they would've agreed. I feel like such a downer and a terrible failure at mind over matter, this really seems impossible at times.

Monday they told us no solid foods just clear fluids. She's doing mucelax laxitive. She can't try to physicaaly move things b/c radiation burns. She hurts terribly when peeing, thought doing it in the tub of water might be an idea but initial hit if water is equally as bad. She just uncontrollbly shakes from pain.

Oh, she's had 4 consecutive days off radiation, go back tomorrow, still 9 left.

Re: Bad Nights

Posted: Wed Jun 18, 2008 2:20 am
by wamo
I can hear your worry and pain in your message.... take a deep breath and know you are doing all you can to help your mom...

My husband had rectal cancer and 6 weeks of radiation everyday M-F.... he tolerated it well until about 3/4 of the way through. He had the excruciating pain, uncontrollable shaking / shuddering from the pain when he tried to go to the bathroom. He also was on oxycodone... and as long as he wasn't driving he could have 2 every two hours... but sometimes that just isn't the right pain med for the pain receptors that are experiencing the pain. I would first ask onc if there was another thing to try... at one point they had him taking Motrin and Oxycodone and that helped a lot when he had a rectal abscess.

Now this is really KEY..... SITZ BATH SITZ BATH SITZ BATHSSSSSSSSSSS. No one ever told us this would help despite our reporting in of his horrible pain from treatment. I got on the computer one night and saw a couple of references to do sitz baths to relieve the pain. My husband could have kissed my feet.... he said that was the ONLY thing that helped him. It was still tough and painful but frequent sitz baths helped over all with all of it. Basically, warm water in the tub, no soap... and you only need enough for the water to go just under your bum area... not a full on bath, I'd say 4 inches max water height. He couldn't believe none of the doctors ever mentioned something like this might help and boy did it! So at least try...

It sucks, no doubt. And being a caregiver myself, it is the hardest thing in the world to watch someone you love in that much pain. I used to worry about how much pain meds and would he get addicted, etc. One time my pharmacist told me (we have become good friends since I see him so much) that when someone has cancer those concerns become secondary... your priority is to help them through their pain. So don't worry too much ok.
Hang in there I know it feels like how can I do this another day sometimes, but you can and you will get through this time.

Re: Bad Nights

Posted: Wed Jun 18, 2008 3:20 am
by momsCancer
Did your husband lose it and say to leave him alone at points. It's 3am, 1 hr before next dose of oxycodone and her pain level is bad and climbing and anxiety through the roof. She wanted me to leave her alone, she was going to lay on towels on kitchen floor. I convinced her to get backin bed but that I'd stay in living rm to give her space. She's out of her head, I can't reach her. She thinks she is blocked and can't get relief. She hasn't had food for 2.5 days. she had enough liquids the past 2 days. Can I give her Lorazapam anxiety pill 2 hrs early.

Re: Bad Nights

Posted: Wed Jun 18, 2008 4:46 am
by wamo
Yes he did ask me to give him space in a sense... he couldn't talk for a while after bathroom attempts.... it would come on suddenly too be watery yet took all he had in him just to get it out... infact it was like his body was forcing him to push even though he didn't want to (he also has hemorrhoids). All I can do is relate what happened with us, I am no doctor and certainly don't want to act like I am one. So I have no idea if you should give that anxiety pill early or if that is a really bad thing to do.

With our insurance we have a phone number to an advice nurse and if you have that too, I would call the heck out of that thing and let her know your mom's pain meds level and the pain scale rating she is at 1 being no pain and 10 being worst pain you could ever imagine. Let them guide you on all your worries. If you don't have that, perhaps you have a 24 hr number for oncology... there is probably an on-call oncologist always available. You would just call your cancer center and they would either give you a number to an advice nurse or page the oncologist or however they work it. You should not feel that you are alone in this. Make those calls describe everything and they will let you know if yes that is normal or is this happening also or get her to ER now or see oncologist first thing in the am or whatever is appropriate.

But bottom line is take the pressures off of you. Your mom knows you are available to her, be close but give her space if that is what she needs to deal with this. We all have our ways of dealing with pain and feelings of desperation. This is cancer.... it is ugly at times. Stay on it enough so you are comfortable in knowing that you have asked all of the right questions and so on...

I wish I could do more to help you and your mom. I am sorry for all that you both are going through.

Re: Bad Nights

Posted: Wed Jun 18, 2008 4:50 am
by momsCancer
Okay, at 4:00 when I brought her the Oxycodon she apologized. I told her it's okay, she has a right to lose it and be upset and angry. I felt her, she was burning up. Took her temp and it was 101.28. Called the nurse on call, gave 2 tylenol and started antibotic that she has if temp goes above 100. She's had pain pills, anxiety pill (20 minutes early). I'm wondering if there's no constipation only the feeling of it b/c she's so messed up inside from the radiation. Burnt, inflammed, swolen and that's what's making her think she's constipated. She hasn't eaten in 2.5 days. She had plenty of fluids the past 2 days. Yesterday with IV and today drank over 2 pints. She hasn't passed hard stool today only diarrhea. She had 2 mirclax ( stool softener) and a couple of suppositories. Anxiety back down (I told her temp was 100), pain pills in effect, back in control Thank you :)

Re: Bad Nights

Posted: Wed Jun 18, 2008 4:58 am
by momsCancer
Thank you so much for being there. I think we are okay and back in control. I might sound totally losing it when posting but I really try to put game face on for her; calm and never tears. Whle I think I pull it off pretty good, I don't know. It's really hard to know what to do when her anxiety and pain are thru the roof. I try to give her space but at the same time worry that getting in and out of bed on pain med and total exhaustion, she's going to collaspe or something. I just try to be where she can't see me but close enough to know what's going on. I wish I was a nurse and had more exp with all this. I just don't know when it's really serious or not. This thing is really a rollercoaster ride. It helps so much with ya'll there. Thank you, thank you, thank you.

Re: Bad Nights

Posted: Wed Jun 18, 2008 7:16 am
by Joy
I had radiation for rectal cancer and I can tell you it is no picnic. The worst side effects that I had was the constant feeling that I had to have a bowel movement. There is a name for this (can't remember) but essentially it is where the colon/rectal area goes into spasms. I would have 40+ BM's per day which most of the time was only a very little amount, ---- I eventually ended up sitting "full-time" on the toilet. I was given a prescription for clonazepam (sp) which seemed to help with calming down the spasms. I also had really bad radiation burns on my butt which extended up to my tail bone (to this day I still have tenderness) and honestly nothing really helped me with this. My radiologist gave me a 1 week vacation from radiation becaause I was having severe symptoms.

Oh I almost forgot I sat in the sitz bath. It is a small basin which fits over the toilet and you fill with warm water.

I am sorry I do not have any suggestions for your Mom except to tell you (YES) her symptoms are very similar to what I experienced... constantly feels that she has to go!!
My heart goes out to her....and you

Re: Bad Nights

Posted: Wed Jun 18, 2008 8:41 am
by momsCancer
Joy, I put a call into the onc nurse requesting the spasm perscription. I really don't think she's constipated. She goes to the bathroom diarrhea easily 30 to 40+ times a day. I had bladder surgery and had bladder spasms and that is exactly what it sounds like. It comes in waves, she can't control diarrhea to get to the toilet, even on oxicodon pain is easy 8 and climbs the last hour before she can take the next dose. We tried sitz bath on the toilet but it didn't work for her b/c only her bottom was in the water not the front part. Seems like the radiation affects the front part of mom, not so much the back. Her bottom is tore up from the diarrhea and straining. Anyway, she gets the equivalent of sitz bath in the tub. I drop the water level to below really bad areas and then take a pitcher and continually pour a steady slow stream of water to clean. The water initially hurts (when she first gets into the tub) but then is okay and afterwards once she's back in the bed, she says it feels better. I pray the onc prescribes the spasm med., I think that's exactly what she has. Thanks so much!

Re: Bad Nights

Posted: Wed Jun 18, 2008 8:43 am
by momsCancer
One more thing, she took the shot to help her white blood cells ($4000.00 shot) on Friday. She's complaining about pain in her lower back and hips. Do you think it's from the shot? If so, how long will it last?

Re: Bad Nights

Posted: Wed Jun 18, 2008 9:08 am
by Joy
I don't know about the "shots" I never had them. If my memory serves me I am sure that I read somewhere on the Forum that bone pain is one of the major side effects.

I am sure that someone will "jump in" and give you the info on the shots.
When I was going through Chemo my very loving daughter travelled 3 hours each way every week-end, and on her days off work (with grand-daughter and dogs in tow) to look after me and give her Dad a break. She was wonderful to me. My son lives only a few minutes away but he was in denial that I was sick....thank God for daughters!!!

Your Mom is very lucky to have you in her "corner".


Re: Bad Nights

Posted: Wed Jun 18, 2008 10:58 am
by bradyr
no you don't have to wait the 4 hours - you were perscribed 1-2 every hours - even 3 every 4 hours or 2 every 3 hours is not a big change (only when it comes to how many pills you are getting in perscription at time - you need to tell you doctor, so they can provide more pills at the increased dose)

I'd also recommend taht you ask your doctor for a seperate perscription for Oxicotin - to take 1 or 2 at night as a back-stop to the short-acting oxicodone. I find I need both. the oxicotin isn't as powerful (to me as the oxicodone, but if I take one or too right before beed (independantly of hte oxicodone) then whenthe oxicodne does wear off, it's not as Abrupt (and when the oxicodone wears off, it's light turning on a light bulb - it's wears off that quick)

another drug that help is over hte counter - are your mothers kidney's in good shape - if so taking a couple of advil at night may help in additon to the othedr pain pills. It is an anti-inflamitory and your mother's skin condition is definitely serious inflamation. I mention the kidney becuae taking Advil long term (regularly for more than 2 or 3 weeks) is not good if the kidney's are question able. I woud not take Aleve as it's ok on the kidney but makes the skin more senstive to longer wave radiation, such as UV and Xray - clearly not something you want too. There is Tylenol as well, but I don't think it's as strong and it's major side effects are on the liver, which I think she should avoid as colon cancer likes to attack the liver and I think anything that make the liver weaker is a bad idea.

run all this by the doctors or doctor's nurse, but I'm sure they will take as many pain pills as necessary to control the pain.

at my peak I was taking 6 oxicotin and 3 oxicodone every 3 hours and I was still able to think, walk around and function, and I was told I was not near the upper danager limit of overdose.

Re: Bad Nights

Posted: Wed Jun 18, 2008 11:02 am
by bradyr
two shots you could be talking aobut - one is to up the white cell count - yes it causes some discofort in the bones as the bone marror goes into overdrive - I take this - this wouldn't seem at all realated to the pain caused the radition as we have disucssed extensively in the other thread on your mohter

the other shots that cause bone pain are the shots that promote bone growth (such as in osteoprose cases) I take this too becuae my bones are weak from the cancer in the bones. they also cause bone pain, but also this seems unrelated to the primary pain, that from the radation treatmetn inflamation of the her skin.