Pain, pain, pain, pain, pain

blainejennifer

Before I started Doxil about two months ago, I was doing well on 15 mg. Oxycontin two times a day.

But, the day after my first Doxil infusion I felt great, so thought I'd go out into the garden and do something about the mulch situation. After about the third bag of mulch, I had to stop. Something felt "off" in my back. By that night, my lower back really hurt.

And, I've been in pain since. It was really bad at first - throbbing lower back pain that didn't resolve until I'd gobbled down about triple the Oxy I'd been on. In about two weeks, it got slightly better, but it hasn't improved much from there.

According to the NP, where I have pain isn't where I should, as per a recent CAT scan. This pain seems to involve my hips and lower back, and gets worse when I walk. My TMs are not rocketing skyward. Granted, they did go up to about 250, which is why I had to switch to Doxil from Halaven.

She has recommended that I stay on increased level of meds, which is a lot! 30 mg Oxy three times a day, with an extra 20 mg of Oxycodone for break through pain, which I do end up using most of the time.

I get to spend about an hour and a half in an MRI on Tuesday, to investigate what is going on. I'm hoping this isn't progression, but if it isn't, what the heck could it be? If it is progression, there is talk of radiation. If it helps, yes please.

Sorry if I'm rambling. I feel doped up. The Oxy is great for pain relief, but it gives me a headache, a wonky stomach, and the blues. I'm weepy and grumpy. Haven't felt this gross since I was first diagnosed.

I'm using alternating heat and ice on my lower back, and doing stretches for tight hip flexors, etc.

In your experience, how long will this last? I'm trying to be stoic, but this sucks. Thanks for reading to the end of this rant.

RosesToeses

I'm so sorry, how terrible!  Have they done a PET or bone scan to rule out mets?  

If it's not mets, I think I'd talk to my primary and see about a referral to a back specialist/orthopedist or possibly a palliative care/pain doctor.  Maybe this is because I hate oxy and the things it does to me, but the idea that the solution is just more opioids seems really wrongheaded to me.  If it's not mets, I'd want to see about nerve blocks or muscle relaxants.  If it is mets and doxil is taking too long, all I can say is I had radiation therapy to my hip and the pain relief was nearly miraculous.  Not all areas are suited to RT, but I'd want to talk to a radiation oncologist about it before ruling it out.  Either way, the idea that you should just triple your dosage seems like it should be a last resort, not first.

susan_02143

Ugh. I truly hate to read this! I can't imagine tripling your Oxy RX so quickly. At the risk of sounding trite, please make sure that your medical team isn't just looking at this through the Cancer Prism, but also considers that it might be that you had a "normal" response to moving your body. As my oncologist says "we have to look through the Cancer Prism, but sometimes it is just something else."

I have no personal experience with this type of pain, but when my upper back went "wacko" a good PT person was a godsend.

*susan*

cling

Jennifer, sorry to see you in such pain. Have you seen an orthopedic doctor? Could it be from broken bone

Kandy

Jennifer, I'm so sorry you are dealing with such pain issues. It sucks. I'm another one that takes high does of oxycodone and OxyContin. I really don't have side effects from using them but to get up to where I am have been a slower process than tripling. I think at this point you will have to wait and see what the MRI shows and then make decisions accordingly. The good thing is mri is so much more sensitive than CT is, so it should give you an answer. The other nice thing is even if it's not cancer but let's say a disc in your back is messed up, it will show that too. I will be thinking and praying for you and hoping for the best

blainejennifer

I had the MRI today, and it turns out that my L1 vertebra has collapsed. Plus, there's just a wagonload of arthritis in the cervical and lumbar region. On the happy side, even though the MRI took almost two hours, it was fairly comfortable, and passed quickly (with a little help from Dr. Ativan).

Tomorrow, I will find out if I am a suitable candidate for radiation therapy. That area might not have active cancer - they have to cross-reference it with the PT/CAT scan.

If it is actively cancerous, good luck finding a surgeon who will take it on. At least, that's what I thought the nurse was implying. Will confirm tomorrow. Maybe she was referring to finding a surgeon here in my small town - I'll bet that's it.

I'd love to hear from anyone who has dealt with spinal surgery. I've had an easy run, so far, and I should have been better prepared for something like this to happen.

Off to go holler at the menfolk. I am tired of living in a sty, and we need to deal with that.

dsyoung53

Hi Jennifer,

When I was first diagnosed, I had severe back pain and was diagnosed with a collapse T10. I had a vertebraplasty which is a procedure where they inject glue into the vertebrae to stabilize it. It was all done through interventional radiology with twilight sedation. Then 10 days of radiation. That was in 2010. Other than the liver mets I have, I have hardly any back pain, just from arthritis. The pain relief was immediate after the vertebraplasty and radiation.

Hang tough, you'll get through this.

Diane

RosesToeses

Jennifer, so sorry about what it is but glad you have answers.  Hope you get relief soon and find an excellent doctor out of town.  Hugs!

blainejennifer

Diane,

Thanks for the information! I'm talking to a radiologist today, and will ask why they appear to be heading to radiology first, with - possibly - the vertebraplasty after.

The best part is that it looks like I won't be in pain forever and ever. Yes!!

blainejennifer

Roses,

Out of town docs are probably the guys that will be handling the vertebraplasty. Have you had any experience with traveling for care? I haven't, and that part is a bit scary. You know, coordinating accommodations for the spouse/kid, and taking care of the critters.

Luckily, I should be traveling only about 2 hours.

Many thanks,

Jennifer

blainejennifer

I have a plan of treatment!

My collapsed vertebra is L1, and I have some active cancer in the lumbar vertebrae above them. So, even though I feel the pain in my sacral vertebrae (which don't light up at all), starting Friday (planning session), I am going to do a five day radiation treatment for those "shiny" vertebrae.

As an experiment, I just took a hilly walk. That usually makes my hips and lower back very painful, and it did this time too. Instead of icing the lower back, I iced the lumbar/lower thoracic back to see if it mitigated the pain. It did. Icing where I felt no pain helped to relieve the areas I had pain. Freaky.

Maybe the radiation will work. And - as the Doc said - it's never a bad idea to quell bony spinal cancer.

Jennifer