~Pain Well Controlled And Then Bammmmm!!~

Believe51 · 05-19-2009, 10:01 PM

Bone mets have always plagued Mighty Oak since day one, both lytic and blastic lesions. Recently some may remember that we had the pain overcome Ed and get ahead of him. Thanks to you Angels we were set on the right path after a long struggle. Pain management was well controlled for some time and Ed would have sudden 'attacks' that lasted days but were still controlled. No matter how well controlled though, there is always pain.

He started out with more than usual pain 2 days after treatment and this time it blew him out of the water. At first we thought it was the side effects of the Ixempra treatment, but quickly realized that it was not. This time it was the most pain he has ever had in this journey. He could not manage with the medication he had and he has some heavy duty drugs. The way he was falling asleep was 'passing out' and for no more than 15 minutes because the pain would wake him up again.

I cried this morning as I called the doctor and begged for something stronger. I miss my husband! They sent in an emergency 3-day supply for him and I picked that up and administered a magic pill all in record time of 30 minutes (Oh yeah, who's the girl?? hehehe). I will travel early tomorrow to get the prescription and get that filled. He is my good 'ole boy again acting real crazy once more....whew.

Please if anyone has had any kind of pain issues like this make sure that you have something that will kick butt for that breakthrough pain in a pinch. If we were allergic to bees we would have a kit in the car right?....and maybe we would never need it. Not all of us will have the kind of pain that he has but there are cases. Please be ready, especially because we were ready and used up our backup drugs but still needed more. The amount of drugs he needs to control this pain is ridiculous. I feel sometimes like I am so selfish to encourage him on. We once again talked about stopping treatment possibilities....but not now.....

Right now we plan on beating the living DNA right out of those repulsive cells. We are here to make history and it starts now!! First Ixempra went as well as any other chemo but not a complaint...so like Mighty Oak. The only complaints were pain. We have it controlled and we are focusing on the plan.>>Believe51

SoCalGal · 05-20-2009, 12:00 AM

Gosh Marie, I don't know where you get your strength but I'm glad that you seem to always rise to the occasion and do what needs to be done. I hope that Ed gets some well-deserved relief and that you get some peace of mind once you see that he's comfortable. You are an angel!
Flori

WomanofSteel · 05-20-2009, 07:06 AM

Marie, you just keep doing what you are doing. Ed has his own personal angel. I hope he is feeling more comfortable quickly with the new meds.

Darlene Denise · 05-20-2009, 10:51 AM

Marie: Has Ed ever used Fentanyl patches? I found the constant delivery of pain meds from the patch and then just using the other pain meds when it really spiked to be of great benefit. If it is really that bad, how about a IV pump at home?

Just some thoughts, I wish Big Ed total RELIEF ASAP!

Darlene

Believe51 · 05-20-2009, 02:44 PM

Hello my Princess', I managed to get his pain under control but the scary part is that he is on the Fentanyl patches, the highest dosage of percocet, the highest dosage of Oxycontin...and so on. Although I am scared about the amount of medication he is on but it is the only way he can live. We will be discussing the IV though and I so thank you for mentioning this, I have been tossing this around.

Anyway he is smiling and laughing just like the OakMan I know and love. As far as treatment goes, this may be too soon to tell but he is tolerating it well. Again it has only been one treatment and I will post more details seperately for anyone that will be exploring this drug. His appetite is not what I would like to see but he is eating. Since treatment we have been out to eat several times for whatever his urges are since it is hard to cook so last minute. This does not help my diet and the reason I have gained some weight during this journey, but I have recently lost weight though 'cause I am working it, working it hard (hehe).

Still have to investigate the next course of drug for these attacks. Hopefully this will help for now until treatment starts to work. Thanks for calling me an Angel but I feel like just the opposite. I feel like a demanding haunt and probally will remain feeling that way until he says 'uncle'. But.......right now it is not that time. Right now we are staring in the face of cancer and reminding it that it is not welcomed here. He will fight down this beast once more and like I said, we will make history, for he already has and we are not done yet. And Flori, we will not write the ending (wink).>>Believe51

Joan M · 05-20-2009, 08:40 PM

Marie,

I've hear of breakthrough pain and I'm glad that Ed's pain is now under control again.

He seems to be tolerating the Ixempra well, and I'm praying that it works for him.

Joan

Rich66 · 05-20-2009, 09:00 PM

Maybe you already exhausted this site:

http://www.cancer-pain.org/treatments/breakthrough.html

Rich66 · 05-20-2009, 09:41 PM

http://professional.cancerconsultant....aspx?id=43054

http://www.mbcnetwork.org/blog/?p=167

http://www.renalandurologynews.com/D...rticle/136212/

Since approved for renal cancer, maybe off-label use?

ElaineM · 05-20-2009, 09:42 PM

Aloha,
I am glad Ed's pain is controlled for now. You are an angel. Just keep doing what you have been doing. Ed is a lucky man. He sure knew what he was doing when he picked you !!!!!!

hutchibk · 05-20-2009, 10:37 PM

Wow. I am so glad that Ed has you - what a champion. I can't even relate to the pain you are describing, but a dear friend of mine had that type of pain from bone mets, and she too had to call in the "big guns" ~ Best wishes to Ed...

Rich66 · 05-20-2009, 11:15 PM

http://her2support.org/vbulletin/showthread.php?t=39422

pattyz · 05-21-2009, 07:04 AM

Marie...

I'm so relieved for you both to get Ed' pain under control in whatever way that works! The consequences and 'side effects' of pain, on a scale of 10+, become devastating and can fast head to the 'throw in the towel' thoughts...

I did not want to ask before as your hands, heart, mind were overdosing: Did you receive my em w/ "Last Options" info??

Did Ed have his MRi yesterday? I could see why not, if it was postponed.......

hugs with hope to you both, dear.

xoxopattyz

alicem · 05-21-2009, 07:04 AM

Hi Marie, just checking in to let you know I am thinking of you and Ed. You are both so inspirational. Sending lots of prayers and hugs your way.

Shobha · 05-21-2009, 08:08 AM

Marie,

You really are a pillar of strength! My prayers are always with you and Ed.

hugs,
shobha

juanita · 05-21-2009, 05:04 PM

can't give you any suggestions but want to say i'll say an extra prayer for y'all that you can get this pain under control.

Lani · 05-21-2009, 06:01 PM

new nasal spray formulation of drug for cancer breakthrough pain
Fentanyl Pectin Nasal Spray Offers Fast Relief of Breakthrough Cancer Pain: Presented at APS
[Doctor's Guide]
SAN DIEGO — May 12, 2009 — The use of fentanyl pectin nasal spray rapidly and effectively combats episodes of breakthrough cancer pain among patients who are tolerant of opioid medications, researchers reported here at the 28th Annual Scientific Meeting of the American Pain Society (APS).
"Treatment of breakthrough cancer pain represents an unmet need in therapy for patients with advanced cancer who sometimes experience periods of intense, debilitating pain that can not be predicted," said Allen Burton, MD, Department of Pain Medicine, University of Texas M.D. Anderson Cancer Center, Houston, Texas.
Dr. Burton and colleagues tested the use of fentanyl pectin nasal spray among patients who were recruited for a randomised, placebo-controlled, double-blind, crossover study conducted in the United States, Argentina, and Costa Rica.
The study analysed use of the treatment in 659 breakthrough cancer pain episodes, 459 of which were treated with the fentanyl nasal spray and 200 of which were treated with a placebo spray.
After a 10-day screening period 83 patients entered the 2-week titration period, and 76 patients completed the 2-month study.
"In some cases, the patients experiencing breakthrough pain were able to get relief within 5 minutes using this nasal spray," Dr. Burton said at his poster presentation on May 8.
He said that breakthrough pain typically can last up to about an hour, and standard rescue mediations can take most of that time to become effective. Breakthrough cancer pain often occurs even though patients are already taking opioid medication for chronic pain caused, most often, by cancer that has metastasised to bone