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Mom's Pain


Annie01

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Hello,

My mom has a pain in her butt--literally, and I swear it's not me! :wink:

The pain was mild prior to her diagnosis of Stage IV NSCLC (squamous cell) in early March. A "hot spot" at the site of her "butt pain" showed up on the initial PET scan, but the thoracic surgeon, her oncologist and an ER doc have all looked at the PET scan and all agree it doesn't appear to be cancer, but they don't really know what it is--perhaps arthritis. They don't seem concerned about it--obviously, their focus is the cancer.

She started IV chemo treatments of carbo/taxol about 10 weeks ago--one treatment every 3 weeks--and the pain has become worse since chemo started--severe enough one time to go to the ER on a weekend. She has a prescription for what amounts to Vicodin (hydrocodone5mg/APAP 500mg) which helps some, but she says the pain is a 7 on a scale of 1 to 10, with 10 meaning--take me out and shoot me. I think that's pretty high.

Does anyone have any thoughts about this? Has anyone else experienced this? Should she be more assertive with the doctor in trying to figure it out?

Thank you.

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Annie-

I am so sorry that your mom is experiencing this type of pain. Just going through chemo is bad enough.

I definitely think that she should EXPECT her docs to figure out what this pain is from - 7 on a scale of 1 to 10 is totally unacceptable. And saying maybe its arthitis is unacceptable, too. They need to run more tests or refer her to another doc to find out what is going on. Believe me, I have been down this road and had to demand more tests - once it turned out to be a blood clot and the next time a hip met. Doc was going to just "assume" the pain was from chemo. She MUST be proactive in her treatment!!!

Sending lots of prayers that she begins to feel better soon.

Hugs - Patti B.

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I agree that her doctors should be more diligent in finding the root of and easing her pain. That should be number 1!

I don't know if this will be relevent, my dad had severe lower back pain for a while before and even after his diagnosis. The docs focused on his lung and the known site of metastasis, chalking up the back pain to arthritis and "age" (he was 63!) and inactivity since having bad effects from chemotherapy and not being very active anymore.

Long story short a LONG overdue bone scan revealed spinal mets. I wish they would have found it earlier and he hadn't had to go thru so much pain for so many months. Radiation eliminated 90% of his pain though.

I'm not saying your mom has mets, I'm just saying that it's vigilent to be your own advocate and insist on the care you deserve. Even if they can't determine the cause of her pain, they should be exercising better pain management for her.

I am wishing your mom some comfort and a solution to her pain soon.

Keep us posted and I'll keep her in my prayers.

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Hi Annie. Yes I think for sure you need to be more agressive on following up on the source of the back pain. If a hot spot showed up on a PET then that is very suspicious. The back is a very tricky place. And, the pain can get worse very fast, as I can attest to.

I have finally had successful radiation treatments to my back that have relieved the pain signficantly. So it can be helped, and your mom should be helped, nobody should be living in that kind of pain.

Please give your mom my best and I hope you get things figured out. Keep us posted.

Sandra

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I agree totally with all the previous advice, especially about being proactive.

A pain in the area you mention cannot ever be taken lightly. There can be a number of physical reasons for that issue.

Not that this is a subject related, but when Bill and I were in the Cancer Center the other day, a woman who was with her father told us something that scared the bejeebers out of me.

She said that she watches everything being done during her father's treatments because they went home one day and later were informed that none of the bags of chemo drugs had ever even entered her Dad's veins. Needless to say, they went the next day to do that procedure over again.

She said, "We didn't know, but we NOW know what to look for." They were new to the cancer diagnosis.

Yes, be proactive. Ask questions. Don't be wary to query. It's your Mom's life.

Hope you find out what the cause of your Mom's pain is. Praying that your Mom finds comfort soon. Good luck to you both.

Barbara

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Annie,

I developed shingles during my chemo. They are very painful. At first they are just a deep sharp/dull pain, then mine turned in to these ugly scabbie things. They started in the small of my back way down low then went on across my butt! Just a thought!

Dana

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Hi Annie,

My mother was diagnosed with a spot of cancer in her buttock area when her PET showed it there. She also had adrenal glands show up "hot" too but the Dr.s never were concerned with the areas. I was concerned about every little millimeter of it but maybe from their point of view looking back at my mothers spread of cancer they were more concerned with the major areas concerning organs, etc. Things that would be more life threatening to her. So maybe that is why they are putting you off with it. To me it seemed like I wanted to talk about every detail and the DR. wanted to get to other things. Looking back the things I was concerned with weren't life threatening to her as much as other areas in the body. Hope this helps and maybe thats where they are coming from but if her PAIN is there and PERSISTS you must fight on for relief maybe ask about getting the spot radiated etc. I had to fight on for my mother to get her shoulder radiated after 4 painful sorrowful weeks I watched my mom go througth not knowing that was an option for her.

Best of Luck to you

and you are in my

prayers-

Marci

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He probably needs a bone scan to determine once and or all whether the pain is from cancer or from arthritis. A year ago my mom was told that her lung tumor was stable from CT scan, but she was complaining about pain in her back and hip and the Dr. ordered a bone scan and they discovered new mets to her spine and pelvis. I don't want to frighten you, but if there is a met there, you need to know sooner rather than later. Radiation can zap those babies and bring significant relief from pain. Mom is doing well now, but I shudder to think what might have happened if we had waited another 3 months for the next set of scans.

Susan

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