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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-10-10 05:57
Subject: [cancer] Pain
Security: Public
Tags:cancer, health, personal

Fairly productive for a while yesterday, and a good GI day by my current standards, but most of what happened yesterday was swept aside by pain.

Neulasta is a drug given to me (at $7,000 per dose, retail price) the Monday after each chemotherapy session to bolster my immune system. The reason I had to delay a chemo session last month was because we’d omitted the Neulasta in hopes of spreading it out to every other session. We all know how that turned out. This stuff works.

I’m not clear on the pharmacological mechanism of Neulasta, but basically it gooses the bone marrow. One known side effect of Neulasta is so-called “Neulasta hips”, pain in the hips that occurs some days after the injection. The hips, pelvis and thighs are the largest concentrations of bone marrow, so whatever Neulasta is doing, it’s doing the most of it there.

Frankly, they may as well call it “Neulasta inquisition”. Or “Neulasta red hot poker up the ass”. Because calling it “Neulasta hips” makes this pain sound kind of cheery and cute. A minor affliction, on a par with a regrettable spread of acne across an adult face.

This was pain on a level I’ve rarely felt outside of surgical recovery or ER-grade trauma. Much, much worse than prior Neulasta cycles. It begins as an sharp ache in the lower back and hips. The ache is positional, and if I remain fairly still, doesn’t bother me much. This feels a bit like a combination of osteoarthritis and classic lower back pain.

Yesterday evening I passed beyond that. The back-and-hips ache flared to a 6 or 7 on the pain scale. The muscles across my lower back spasmed continually. My thighs felt as if they’d been beaten with a broomstick. I got sympathetic pains in my biceps, as if a very strong person were clamping their hands on my arms. I was both sweaty and chilled, and experienced a headache as well as pain-induced nausea. It didn’t matter what position I sat or lay in, or how still I held myself, this pain pulsed through my body over and over and over. The pain was so overwhelming I could not read, could barely think, and kept weeping and moaning from the intensity. At one point my lower GI insisted on a trip to the toilet. You can imagine the sensation of passing stool while all this is going on. Two Tylenol Extra Strength didn’t even begin to touch it. I went to bed, but of course could not sleep for the pain.

After about two hours of this, it faded sufficiently for me to fall into an uneasy, difficult sleep.

Oddly, pain is rarely a feature of my cancer experience. I’ve never had any pain at all from the disease directly. With the exception of the drug-mediated post-operative environment, the treatments have produced all manner of sensations and difficulties, but never pain.

Except for this. Neulasta hurt me so much yesterday it was frightening. I have five more of these to look forward to. Skipping Neulasta is not an option, as my immune system crashes out. I need this to stay fit for chemo. But good God, it hurt. Pain, crying, please-I’ll-do-anything-you-say-just-stop hurt.

Cancer sucks.

Originally published at jlake.com. You can comment here or there.

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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2011-10-10 13:38 (UTC)
Subject: (no subject)
Oh, we're going to have a big talk this Friday, me and my onc. The basic problem is my non-opiate pain reliever options are pretty limited -- even then, like I said, two Tylenol Extra Strength did squat last night -- and I really, really, really don't want to take opiates because of their catastrophic effect on my lower GI.
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markbourne
User: markbourne
Date: 2011-10-10 13:33 (UTC)
Subject: (no subject)
What casacorona. Especially about hoping it ends soon. Serious sympathies, pal. ::Sigh and flailing arms::
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fledgist
User: fledgist
Date: 2011-10-10 13:38 (UTC)
Subject: (no subject)
I agree with casacorona. Pain hurts, and if it can be moderated or relieved then get something to moderate or relieve it. Sleep is the great healer, and you need it, it seems to me.
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Amy Sisson
User: amysisson
Date: 2011-10-10 13:53 (UTC)
Subject: (no subject)
Oh wow, I'm so sorry about this. I hope they can find a way to provide you some relief.
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torreybird
User: torreybird
Date: 2011-10-10 14:51 (UTC)
Subject: (no subject)
:-( Agreed with casacorona: pain management is essential to health.

If pain meds aren't an option (which I sincerely hope they are), does hypnotherapy, guided meditation, holotropic breathwork, etc. do anything for you? I never put much stock in them until nothing else worked - and then was pleasantly surprised.
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adelheid_p
User: adelheid_p
Date: 2011-10-10 14:57 (UTC)
Subject: (no subject)
I understand this is quite a difficulty. I agree that pain isn't good for your healing/immune system. I know you've experienced strong adverse effects with the kind of pain meds that would address this. I hope that you and your doctors can find a solution to this for you.
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Jay Lake
User: jaylake
Date: 2011-10-10 15:35 (UTC)
Subject: (no subject)
I'm okay today, just some twinges. As awful as it was, the pain was transient.

As for the non-opiate pain relievers, they get pretty wormy about it over at my hospital. I think I need to come in armed with some research. Because shutting down my lower GI for 3-4 days of horrid constipation is not the answer to 3-4 hours of transient pain, however terrible the pain is.
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adelheid_p
User: adelheid_p
Date: 2011-10-10 17:36 (UTC)
Subject: (no subject)
So, they won't take your word for it that if you take the opiate pain pill, you get constipation? They think that you're mistaken or that something else causes the constipation? I mean, you're choosing severe pain over this and this is serious stuff. What does it take to convince them? Is there any other doctor who you can talk to who could get them to take this seriously? Could your therapist?

Maybe you need to go occupy the hospital while you go through this and they will see that you mean business. What the heck does it take for medical professionals to believe what someone is enduring is real?
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Jay Lake
User: jaylake
Date: 2011-10-10 17:40 (UTC)
Subject: (no subject)
My docs listen to me. And they are very clear on the opiate-GI connection for me. The problem is every time we've discussed non-opiate pain relief in the past -- for severe pain, specifically, such as post-surgical recovery, and now this -- they've essentially said, Ibuprofen or Aceteminophen, pick one. And those two simply aren't tall enough for this pain spike.
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adelheid_p
User: adelheid_p
Date: 2011-10-10 19:45 (UTC)
Subject: (no subject)
I'm glad that they do listen. That is so important. Is there a pain specialist that you can consult? Is the problem an interaction of other stronger pain meds with the chemo or other medications, physical issues that is the problem or simply that no other pain meds exist for pain that will help?
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Jay Lake
User: jaylake
Date: 2011-10-10 19:51 (UTC)
Subject: (no subject)
I'll be talking over all this with my oncologist on Friday. The problem is that all the stronger pain meds are opiate based, and opiates absolutely wreck my lower GI. (To the point where in the past I've been hospitalized for opiate-induced constipation.) So we do everything we can to avoid using them in any way, shape or form.
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scarlettina: Hug
User: scarlettina
Date: 2011-10-10 16:09 (UTC)
Subject: (no subject)
Keyword:Hug
Oh, honey, I'm so sorry. God, that's awful. I'm with casacarona on this. I totally support your talking to your doctor about pain meds of some sort. Either that, or something that will let you sleep through the pain. I know you'll hate to lose the hours but, at the same time, I'd rather see you sleep through the pain than suffer through it.

::hug::
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Jay Lake
User: jaylake
Date: 2011-10-10 16:11 (UTC)
Subject: (no subject)
The sucky part about sleeping through it is that's my 'good' weekend lost. Sigh.
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mlerules: KITTEN CUTENESS
User: mlerules
Date: 2011-10-10 16:15 (UTC)
Subject: (no subject)
Keyword:KITTEN CUTENESS
So sorry to hear this. Mebbe docs can prescribe extra pain-relief to counteract this? *hugs*
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threeoutside
User: threeoutside
Date: 2011-10-10 16:39 (UTC)
Subject: (no subject)
I'm so sorry you're going through this. *hugs* dood.
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Kari Sperring
User: la_marquise_de_
Date: 2011-10-10 17:07 (UTC)
Subject: (no subject)
I am so very sorry to hear this. I hope it never gets to this level again.
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kellymccullough
User: kellymccullough
Date: 2011-10-11 03:25 (UTC)
Subject: (no subject)
Just a note on the sweaty and chilled phenomena. I had a truly nasty round of that two years ago when I contracted some sort of stomach virus that made a good run at killing me off. Pain made me sweat and the evaporating sweat put me into the borderlands of hypothermia. Blankets only helped for a little while before they got saturated and stopped keeping me warm. After a day or two of this it occurred to my wife to bring me a lightweight electric blanket. The combination of the thinness of the blanket and the built-in heat source made it self drying on a very short time scale and after that I stayed both warm and dry. It really made a huge difference.
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jenntheamazon
User: jenntheamazon
Date: 2011-10-11 03:46 (UTC)
Subject: (no subject)
Oh God, Jay! I'm sorry! I've experienced pain close to a 6 or 7, but to have to go through this weekly? That's just wrong. I wish there were other options to keep your immune system happy, but until then, let me lend you a perverbial shoulder to cry on. Stay strong Jay. Don't be afraid to let out a scream now and then to help you through it all. I've done it. Screaming can work wonders when your in pain.
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That Which Fights Entropy: me with scarf
User: amberite
Date: 2011-10-11 08:01 (UTC)
Subject: (no subject)
Keyword:me with scarf
Yipes. I am so, so sorry. I've had pain at that level - some recently - and it sucks.

*hugs*

Now, to the INFORMATIONMOBILE!

Two potentially useful pieces of advice on opiates:

* Not all opiates are created alike, so it might be good to make a list of what you have tried and found problems with. There may be other, obscure ones out there (or non-opiate or semi-opiates - tramadol for example apparently has an effect on opiate receptors but that's not its primary mechanism of action, and there are a few others out there like that, that aren't typical in their effects) that they can try.

* Then, there are also alleviation strategies for constipation. Some are opiate-specific and some are not.

I can give my personal experience with a non-specific strategy: I have problems with chronic constipation as a result of the medication regimen that keeps me more functional than I've ever been otherwise, and OTC laxatives only caused discomfort, so I did a bit of research to find out what the clinical standard is for chronic constipation. Lactulose is apparently the shiznit, I went to my doctor to ask for it specifically and got weird looks followed by a prescription, and I have discovered that, indeed, it works way the hell better than anything on the OTC market, with little to no discomfort. It works osmotically, and is often specifically prescribed to patients taking opioids long-term.

Wikipedia is also telling me that there are some delivery systems which prescribe an opioid along with an opioid blocker in such a way that allows the opioid to cross the blood-brain barrier but not the opioid blocker - like this - so as to prevent constipation but not the centrally acting analgesia. It apparently reduces but does not kill the pain relieving effect of opioids (since *some* of that is happening peripherally) but stops the GI effects entirely (since *all* of that is happening peripherally.)

Other potentially useful pieces of information:

* The big doggy NSAID, ketorolac, is probably what they are avoiding using on you - it's a standard for serious business pain when opiates can't be used, but it has a lot of scary side effects.

* Drugs that act on GABA receptors: these include benzodiazepines and some anticonvulsants that are typically used for neuropathic pain. (Gabapentin, pregabalin.) These often have some level of muscle relaxant effect and have sleepiness as a side effect. I know you already have a benzo in your regimen, so from that, I can gather that this kind of thing is not automatically contraindicated in your case.

Hope this helps! And hoping to see you soon.

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Jay Lake: cancer_tumor
User: jaylake
Date: 2011-10-11 13:07 (UTC)
Subject: (no subject)
Keyword:cancer_tumor
Thank you very much for this. Need to parse and process it carefully before I see my onc on Friday.
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That Which Fights Entropy: me with scarf
User: amberite
Date: 2011-10-12 00:59 (UTC)
Subject: (no subject)
Keyword:me with scarf
You're welcome. I hope this is of some use to you!
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Eposia
User: eposia
Date: 2011-10-16 04:15 (UTC)
Subject: (no subject)
Very unhappy to hear you've come over to my side of the cancer symptoms park (pain pain and more pain). It took the better part of two months for my doctors to realize that I hypermetabolize opiates and therefore have to be on doses that would probably literally kill a horse. thankfully I have a genius for a MedOnc so when the pain specialist excused himself from the case due to his uncomfortableness in prescribing what I needed, my MedOnc told me that "I was the captain of my pain regimen" since I had shown him no signs of mental incapacity (I'm also quite lucid on opiates, another side effect that continually freaked them out) and we'd work together to figure out how much I needed to function and when and how much to ramp down. it's been bliss to work with a doctor who finally understands my medical weirdness. I know that opiates have the opposite effect for you but I hope that with the other info in this thread you can find something that does help, because bone pain is NO JOKE. SRSLY.
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