SoCalGal feeling So-so
 

After 40 mg premeds of prednisone today, plus 800 mg advil a couple times with some tylenol in between, sciatic pain is finally quiet enough for me to sit and write and update.

It's been very tough. Finished rads to L1 on 1/20/16. Markers dropped a week later, that was encouraging. But I had migraines, nausea, extreme fatigue and the beginning of an escalation of sciatic pain which is still bad. I've had an MRI, two epidurals which worked but wore off in a matter of days. I've done the medrol dose pak, which helped until the dose was down under 12 mg.

Pain is unmanaged and high. All day long 6-8 never quiet, except right now it's pretty good. Starting my treatment again tomorrow. Haven't had an infusion since December 2015 due to rads starting in Jan 2016. Then weeks of fighting with insurance who approved then revoked then partially approved. I hate them so. Meantime, it got straightened out, along with Genentech's help, patient access to care or something like that.

My options as I understand them are:
1. try a stronger NSAID during the next couple weeks to see if once L1 rads
calm down and stop creating so much inflammation, the L5 nerve will resolve.
2. try a lyrica (if insurance will approve) or Celebrex while I'm waiting the couple weeks,
3. get a surgical consult in the meantime, understand more of my options.


I haven't been able to leave the house, either sick after rads, or resting out the epidural pain, ice, heat and allowing time to heal, or this week tried to do a couple of errands but pain is just off the charts. I did try percoset which made me anxious and itchy and then the next day I had (have) a huge open wound on my recon breast (not cancer side) which is an infection most likely due to so many steroids of late. So I'm on strong antibiotics for 10 days.

Tomorrow will speak with NP and see what her input is - my physiatrist has made his suggestions and had his nurse call me today to discuss ways to knock down the pain and try to get it managed. I also was given NORCO, but I'm too scardo to try. Not loving the feeling from the opiates.

Any input, insight, suggestions are welcome and appreciated. So far 2016 is off to a bang. Would prefer a bang-bang.

Re: SoCalGal feeling So-so
 

You have been through just too much to imagine. I'm also in So. CA. so please let me know if you just want someone to clean your house or drop off some meals. I can't offer any suggestions regarding your treatment, but I can offer help from a fellow cancer survivor. You're definitely in my thoughts and please realize it helps me to help you in any way.

Re: SoCalGal feeling So-so
 

Sending hugs. I'm so sorry to read of your pain.

My only thoughts are maybe craniosacral massage to the surrounding areas can open things up to keep tissues flowing and moving. I have been doing craniosacral massage weekly, focused on the rads treated area at the back of my head. My neuro-onc commented last week that she was surprised I didn't have more swelling as the posterior fossa cavity is such a contained space. I told her that I heard her concerns and so I added external therapeutic massage. I can only suppose that the support was helpful. An osteopath might be an alternate practitioner who can help with this.

The other idea is that maybe acupuncture might help. I fell going down the stairs to let my car out early one morning and deactivated a whiplash injury to my spine that was really painful. I happened to be going for weekly acupuncture at the time for infertility related stuff. When I told him what I was dealing with he did some needle work in my mid back and the pain went away. I still needed chiropractic care but the acupuncture worked better than aspirin at reducing the inflamed painful feeling.

I hope these ideas are helpful to you. Keep us posted on your recovery.

Ann

Re: SoCalGal feeling So-so
 

Damn, sorry to hear about your back pain. I hate narcotics, too and have found Aleve works better than Advil for me.

I have also done acupuncture for my back (L4-L5) and it does alleviate the pain. Just something to think about. Epidurals did nothing for me for me.

I'm not a "hugger" but hugs to you and hope they come up with something to help with the pain

Janis

Re: SoCalGal feeling So-so
 

celebrex IS an NSAID, too,so cannot be mixed with other NSAIDs without substantial risk of Side Effects

How about a TENS machine? Electrodes are placed " between the pain & the brain," working by the gating principle ie your brain cannot register 2 simultaneous incoming pain/vibration/slight pain/tickles to the same degree so it senses less pain--think of biting your finger to relieve the pain of a stubbed toe!

A TENs is about the size of an old-fashioned transistor radio and you can turn it on and off and adjust it at will YOURSELF 24 hrs a day (vs leaving your house for accupuncture) which works in a similar but different fashion it seems. The only side effects could be a rare rash to the adhesive used with the electrodes & their are vest-like solutions if that occurs.

PTs usual instruct in TENs machine usage.

If your wound hadn't broken down warm water pool therapy might have unloaded your spine and relieved whatever pain came from your weakened bone rather than your spinal cord or nerves-- none for now, though!
Once you are healed you might want to check into UCLA warm pool on Veteran--used to be $5 a pop around 20 years ago, no prescription needed

Remember cyberknife may remain an option for you (depends how many rads given to what area so far as I understand it) if any additional rads needed-- have seen even more papers on how it avoids cord inflammation.
Hope some of this helps...
Hang in there!

Re: SoCalGal feeling So-so
 

xxxxxxxxxx

Re: SoCalGal feeling So-so
 

Flori,

I am so sorry to hear of your pain and continued struggles! I agree with Lani's suggestion of a TENs unit and I would ask for an eval with a pain management specialist. In the short run, opiates do make you feel sluggish. I hated them, too. However, the pain is clearly debilitating and dominating your life. It is interfering with your ability to even modestly enjoy life. I think I would take the NORCO and see if it gives some relief. If your pain is managed you can see more clearly through the forest to find a path through the treatment. The hope is that the rads will be effective and when the post-treatment inflammation subsides you will be able to go onward pain free.

Hang in there, Flori! I wish I could give you a hug. I'll send one cross country via cyberspace now! Thanks for the update. I have been worried about you.

Re: SoCalGal feeling So-so
 

So sorry your in pain. You have amazing inner strength. Please know I am praying for you. :)

Re: SoCalGal feeling So-so
 

Flori,
Sorry to hear your news. Just seconding Laurel's comments - the pain management must be your priority at the moment. I hope things turn around for you; you certainly deserve a break!
Thinking of you..... Pam

Re: SoCalGal feeling So-so
 

Flori, I was really hoping to hear that you were much, much better. I have nothing to offer but my continued prayers and love. You are stronger than you know and have given me more hope than I can repay.

Re: SoCalGal feeling So-so
 

First of all, much gratitude for all the love and support and good ideas. I have a tens machine, will give it a try.

Got my infusion yesterday, all 3 drips plus xgeva. And got a shot of toradal which took pain away for the day. Trying aleve as suggested - pain is around 4-5 steady which is better than the 7-8+ but not quiet enough.

Also considering medical marijuana. Any input for pain? I think tincture is preferred. Open to input - I'm not a big fan of this idea but am desperate for relief. AND Dr gave me Lyrica to try - read side effects and they're pretty scary. Not sure I am brave enough to try this shit. Suddenly I'm taking a zillion meds. Not happy.

GOOD NEWS - cea and ca 15-3 came down significantly!! Nice to know radiation was effective. Now I've got to get sciatic pain way down. I'm also going to get a surgical consult in case pain does not resolve in a couple more weeks.

Okay. Hit me with your best pot, fire away!! (Already heard of speedweed.com).

Re: SoCalGal feeling So-so
 

Flori,

That is so funny you went to the Marijuana route. I almost suggested it, but then hesitated because of the continued stigma! Silly, really. I have a friend who played alot of hockey which as you know leaves a person battered and scarred. He gets the liquid through the grapevine from CO. as it is not legal here yet and swears by it. He once told me a single drop under his tongue does the trick like nothing else. I asked if he got a buzz from it, but he says the THC is removed in the processing, so buzz-free. That seems a slight shame to me, but then I grew up in the 70s! He said he experiences no side effects and has been using it for a few years. For him and his broken down body it has been an absolute God-send.

I personally feel that pain is a game changer. It just ruins everything! If you can get it under control, life dawns so much brighter. I say GO FOR IT!

Re: SoCalGal feeling So-so
 

Hi Socalgal,

If your bone pain continues, I would look at Kadcyla. It really was good at knocking out the bone mets that I had. I tried CBD oil (Charlottes web) - it did make me high, despite not containing any THC. I went and registered as a patient at Caring Realm www.theroc.us - got a user name and password. Once you have done this you can go to their sister site and purchase CBD oil. I believe this is the cheapest way to do this. You can either buy online or go to an actual store.

Please let me know if you want any further info.

waterdreamer

Re: SoCalGal feeling So-so
 

Thanks water dreamer. L5 Pain is not from cancer but I think it's from inflammation from radiation to L1 in January. Hoping it magically improves over next 10 days. Otherwise will take my MRI and get a surgical consult.

And thanks everyone for good ideas and encouragement. I hope I get my life back and this pain resolves.

Re: SoCalGal feeling So-so
 

SoCal Girl

With that Prednisone plus NSAIDS you have to think of the stomach. Perhaps you should add a proton pump inhibitor to prevent damage. You can buy prilosec OTC but you should talk with the doctor first.

Paul

Re: SoCalGal feeling So-so
 

I admire your strength through all the pain you're in right now and what you've been through. I can't help you in anyway aside from including you in my daily prayers. Just keep on fighting and I'm sure you'll get wherever you'd like to be.

Re: SoCalGal feeling So-so
 

I too put a plug in for kad./t dm-1 . to prevent more reocc., keep an eye on the ont380 and kad trial . moving on to phase ii after very strong results on her2 brain mets. enrolling 180 pts this yr in phase ii

Re: SoCalGal feeling So-so
 

Flori,

I'm so sorry you're suffering so much. I love you and I want the best for you.

Amy

Re: SoCalGal feeling So-so
 

Well it's been 58 days, 15 hours + 48 minutes since I finished rads to L1 and pain took over my life. And by life I mean I live on an ice pack on my couch. Sheesh.

MRI shows I need small surgical fix - spinal closure down to a pin hole at L4-5 along with a herniation plus adjacent facet has a synovial cyst. After 4 opinions from all the big-wigs around town, I'm going with the most experienced and the one who will do the least work "while he's there". All 4 were surprised by my physical strength so I take that as a good sign. I personally have never felt worse. Pain meds are not my friend. Pot did not help without THC and then I was crazed AND still had pain. I have tried at least 8 combos of anti inflams plus pain meds. So - for now I can deal with pain for another week. Had to be 28 days post Avastin. One night in. My son flying home to help. Daughter will stay in hospital so I can't ask for anything more. I want to get this behind me so I can walk again without being hunched and gasping from pain.
And I need to get back to my infusions. So far 2016 sucks.

Re: SoCalGal feeling So-so
 

Oh Flori,

This just hit my email and I stopped working to check it hoping for good news. Now I am in tears for you. Flori, I am so, so very sorry you are suffering. I promise to pray extra hard for you and that this upcoming surgery does the trick. You know I always ask that you are completely healed.

I have no doubt that the docs are amazed by you. I know I am! The weariness in your fightin' voice worries me, but I realize even a dynamo like you will become exhausted by continued pain and adversity. Thank God for your wonderful children coming to be at your side to help! Be strong, dear Flori.