Pain from spinal mets

[KarMel]

So, I have been having left arm pain, weakness, numbness. Needing high doses of pain meds. Got my MRI this week. It is a tumor between c7 and t1, pushing on cord . Not a ruptured disc. So I have started radiation to alleviate pain. Will take two weeks roughly. In the meanwhile...stronger meds as needed.

Trying to find the happy place where pain gone but dont feel like a zombie.

[Kathryn in MN]

I won't do radiation to my spinal mets again. I'm sticking with the STAR Ablation from here on out. I'm going to use it for any bone mets that I can. I've done both radiation and RFA. There are lifetime limits to radiation, plus it causes severe fatigue and causes nausea and vomiting for me (vomiting controlled by Zofran but I still deal with the nausea). RFA is so much less dangerous to the body and is just a one day out patient procedure. I'm not spending day after day going to radiation again if I can avoid it. (Been through two months of daily radiation in 2011 and two weeks of daily radiation in 2012.)

Fentanyl patches helped keep my pain level better, but it still wasn't great until doing RFA.

http://dfineinc.com/

[KarMel]

I won't do radiation to my spinal mets again. I'm sticking with the STAR Ablation from here on out. I'm going to use it for any bone mets that I can. I've done both radiation and RFA. There are lifetime limits to radiation, plus it causes severe fatigue and causes nausea and vomiting for me (vomiting controlled by Zofran but I still deal with the nausea). RFA is so much less dangerous to the body and is just a one day out patient procedure. I'm not spending day after day going to radiation again if I can avoid it. (Been through two months of daily radiation in 2011 and two weeks of daily radiation in 2012.)

Fentanyl patches helped keep my pain level better, but it still wasn't great until doing RFA.

http://dfineinc.com/

Can Yu explain difference if it is not too much trouble? If the RFA is not available locally, I don't feel like traveling. The radiation center is literally two blocks from my home. Very convenient, except for taking to weeks.

Thanks,
Karin

[abuttigi]

So sorry to hear about the mets, Karin.

My dad's bone mets were in his humerous (no idea how that's spelled), but we used icy-hot patches to hold him over until the radiation. That and morphine. He also liked the hot water bottle a lot, that seemed to help.

Sorry I don't have any more tips, but I'm thinking and praying for you.

Hugs,

Angie

[KarMel]

So sorry to hear about the mets, Karin.

My dad's bone mets were in his humerous (no idea how that's spelled), but we used icy-hot patches to hold him over until the radiation. That and morphine. He also liked the hot water bottle a lot, that seemed to help.

Sorry I don't have any more tips, but I'm thinking and praying for you.

Hugs,

Angie

Angie... You and your dad and I apparently are on the same vibe...I use liquid morphine, icy-hot, and a corn hot pad.... Corn kernels sewn into a cotton bag which can be heated up in the nocrowave and is a great heatIng pad.

Hope all,is going well. Classes good? still getting thru basics?
Take care, you and your mom remain in my prayers... And your sister too!

Karin



Edited for spelling

[abuttigi]

So sorry to hear about the mets, Karin.

My dad's bone mets were in his humerous (no idea how that's spelled), but we used icy-hot patches to hold him over until the radiation. That and morphine. He also liked the hot water bottle a lot, that seemed to help.

Sorry I don't have any more tips, but I'm thinking and praying for you.

Hugs,

Angie

Angie... You and your dad and I apparently are on the same vibe...I use liquid morphine, icy-hot, and a corn hot pad.... Corn kernels sewn into a cotton bag which can be heated up in the nocrowave and is a great heatIng pad.

Hope all,is going well. Classes good?morvstill getting thru basics?
Take care,bayou and your mom your remain in my prayers... And your sister too!

Karin

Great minds think alike! I'm good... I'm in the cardiovascular domain now. I thought I would hate it but I'm actually enjoying myself. Trudging through board questions too.... whoopee. Thanks for asking

[Rob in PA]

Karin,
Sorry to hear about your spinal mets. Your symptoms sound like a problem I've been having recently. My arms are sore from shoulder blade down to elbow...but it comes and goes. Sometimes it will be sore for days and then some times I'll go for days and it won't bother me.

Once bone mets start, does the pain ever subside and come back intermittently? Or is it a constant pain/soreness once it gets established? Anyone else with mets please chime in as well please. I have PET/Ct scan in four weeks. Thanks Karin, and good luck with the radiation. Hope you handle it well.

Rob

P.S. One thing I noticed is that if I arch my back (with chest pushed out) and push my shoulders back, I can feel my upper spine cracking kind of like when I used to go to chiropractor. Once I do that, the pain subsides for a while. Could this just be joint damage from years of radiation? This is driving me crazy and Karin's post hit home with me.

Thanks.

[KarMel]

Karin,
Sorry to hear about your spinal mets. Your symptoms sound like a problem I've been having recently. My arms are sore from shoulder blade down to elbow...but it comes and goes. Sometimes it will be sore for days and then some times I'll go for days and it won't bother me.

Once bone mets start, does the pain ever subside and come back intermittently? Or is it a constant pain/soreness once it gets established? Anyone else with mets please chime in as well please. I have PET/Ct scan in four weeks. Thanks Karin, and good luck with the radiation. Hope you handle it well.

Rob

P.S. One thing I noticed is that if I arch my back (with chest pushed out) and push my shoulders back, I can feel my upper spine cracking kind of like when I used to go to chiropractor. Once I do that, the pain subsides for a while. Could this just be joint damage from years of radiation? This is driving me crazy and Karin's post hit home with me.


Thanks.

I had pain like this for almost 10 years. My chirtoptacter And massage therapist always worked it within a couple weeks. Plus , I had stretches and exercise to do inbetween. It would flare up once or twice per year.

So this time, when four weeks of twice weekly treatments were not helping, and it was getting worse, then the idea of a spinal met , as well as a ruptured disc, hit me.

[clarabelle64]

Dearest Karin, I hardly know what to say to you....I'm sorry you are having such pain and I wish I could help.......if I was able I would stay with you until you told me to go......my prayers are with you and I often think of you my dear......when I think of my darling Debs you also come into my mind as you were both diagnosed within a month and you were so kind to me when I stumbled, blind with worry and grief onto this Colonclub website....I will never forget your gentle, understanding kindness to mewhen you had your own worry to deal with.......the Lord is beside you Karin, walking with you every step of the way.......love and every blessing to you ....
Clarabelle XXXXX

[Kathryn in MN]

I won't do radiation to my spinal mets again. I'm sticking with the STAR Ablation from here on out. I'm going to use it for any bone mets that I can. I've done both radiation and RFA. There are lifetime limits to radiation, plus it causes severe fatigue and causes nausea and vomiting for me (vomiting controlled by Zofran but I still deal with the nausea). RFA is so much less dangerous to the body and is just a one day out patient procedure. I'm not spending day after day going to radiation again if I can avoid it. (Been through two months of daily radiation in 2011 and two weeks of daily radiation in 2012.)

Fentanyl patches helped keep my pain level better, but it still wasn't great until doing RFA.

http://dfineinc.com/

Can Yu explain difference if it is not too much trouble? If the RFA is not available locally, I don't feel like traveling. The radiation center is literally two blocks from my home. Very convenient, except for taking to weeks.

Thanks,
Karin

RFA doesn't do any damage to your body like radiation does. I had IMMEDIATE pain relief. I was a little sore from where they put the probe in for a few days after the procedure, but my pain level overall was lowered so much as soon as the procedure was done. I immediately went off all pain meds! If you go to their website at the link I posted, you can see how the procedure is done. They use radiofrequency ablation to kill the tumor (very targeted high heat), rather than radiation. You can have it done repeatedly, whereas with radiation there is a lifetime maximum. When you get radiation, you might get too much to areas that really don't need it - and then later you cannot have radiation to that area when you need it - like what happened to me. I have a big area that can never have more radiation, so if I have node tumors or other problems that can't be surgically addressed or treated in another way, I am S.O.L. With RFA, you don't have that problem. I plan on fighting this a lot longer, and may be in a situation where I do need radiation somewhere again at some point - I would rather save the radiation for when I can't do anything else.

In my case, I have a tumor at T5 that already had lifetime maximum radiation just because it was in the field of radiation when a year earlier I had radiation to upper abdominal nodes, plus a node on my esophagus. They tried to do radiation to 1/2 of T6 last summer (the other 1/2 of that vertebrae had max radiation just like T5 did earlier). Laying in the machine was so hard with the back pain. Then top that with extreme fatigue and nausea (Zofran kept me from vomiting, but I still had a lot of nausea), and it wasn't fun. Also for some reason the high doses of radiation made me an emotional mess - I felt like crying a lot - worse than being pregnant... The STAR Ablation was just a one day thing, with immediate pain relief, and without all the side effects and permanent damage that radiation does. One other plus - when they do radiation to a bone met, and don't do anything to reinforce the bone, it is still high risk for a fracture - just as it is when you have the tumor. With this procedure, if you check the StabilT procedure, they do that afterwards, and insert the cement glue to give the vertebrae strength again - no risk for fracture. They use this part for people that have spinal fractures, with great success.

I didn't know about the RFA options until after I went through radiation that did help my collarbone and shoulder mets, along with my mets at T1 and T2, but didn't help my biggest most painful issue in my back at T6. (My shoulder was really bad, and after 5 tx of radiation it was much better, but now I have radiation damage which limits my mobility and strength in that shoulder and arm.) From here on out I will pursue the RFA first, and only consider radiation if RFA can't be done and radiation can.

[Kathryn in MN]

If they haven't started you yet, ask about getting Xgeva shots, or the IV (forget the name of the drug) version to help strengthen your bones. I do the shots - less time in the infusion room that way.

[Kathryn in MN]

Karin,
Sorry to hear about your spinal mets. Your symptoms sound like a problem I've been having recently. My arms are sore from shoulder blade down to elbow...but it comes and goes. Sometimes it will be sore for days and then some times I'll go for days and it won't bother me.

Once bone mets start, does the pain ever subside and come back intermittently? Or is it a constant pain/soreness once it gets established? Anyone else with mets please chime in as well please. I have PET/Ct scan in four weeks. Thanks Karin, and good luck with the radiation. Hope you handle it well.

Rob

P.S. One thing I noticed is that if I arch my back (with chest pushed out) and push my shoulders back, I can feel my upper spine cracking kind of like when I used to go to chiropractor. Once I do that, the pain subsides for a while. Could this just be joint damage from years of radiation? This is driving me crazy and Karin's post hit home with me.

Thanks.

The pain from bone mets does not go away - it gets progressively worse. The only help the chiropractor gave me was a bit more range of motion in my right arm (shoulder mets). I was getting frustrated because I kept going to him and he wasn't really helping me. He'd been able to help my back and neck issues in the past, but not anymore. The pain kept getting worse. Then the PET scan showed my bone tumors to right clavicle, right shoulder, T1, T2, T5, T6. While I didn't like hearing I had bone mets, I was relieved to finally know why my pain was so bad. I wasn't sleeping at night - couldn't get comfortable no matter what I did - couldn't sleep on my right side due to the shoulder, but my back still hurt really bad when I tried my left side. I'm not a back sleeper, and it hurt to lie on my back anyway. The radiation helped a lot, but with my pain at T6 I was miserable. I was glad to find the STAR Ablation system (just approved by the FDA last summer) to help me. I have my life back! I really couldn't do much of anything due to that tumor - lifting, bending, twisting - all hurt a lot. Even on pain meds and with my incredible new adjustable bed I wasn't sleeping well. (Before the bed I wasn't sleeping more than 15 minutes at a time from sheer exhaustion. After the bed I at least got longer chunks of sleep, and could find positions that really helped my pain when I was awake too.)

Your situation really does not sound like bone mets to me. With cancer anything is possible, but I really doubt it. It isn't a "soreness" but a constant pain. Nothing like having sore muscles, etc. Your PET will let you know for sure.

[Rob in PA]

Thanks Kathryn, and thank you for being our "go to" gal for STAR ablation. Even though I was very pleased with my SBRT results, I'm definitely feeling the side effects from it. I'd do it again (SBRT) in a heartbeat....but it's nice to know about the STAR ablation procedure if that is an option along with/or instead of SBRT.

Karin, you should probably look into RFA even though the radiation center is only a couple blocks away. I've had radiation twice now and feel like i've aged 20 years from it. I'm thankful for it, but it is what it is....nasty stuff.

Enjoy the weekend everyone!

Rob

[doublebeats]

My husband is suffering from a sacral spinal mets and even high doses of pain meds aren't making him comfortable. He's had the max lifetime radiation dosage for this area...we live in Ontario, Canada and I'm trying to find out whether the STAR ablation is available here, as mentioned by Kathryn. Does anyone know? I emailed the company Kathryn provided the link for, but have not received a response. Thanks for any help anyone is able to give us!!