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(2 replies, posted in Pain Management)

Has anyone used a TENS unit for pain management with their cancer?  Have a lot of lower back and abdominal muscle pain from my body trying to overcompensate for the pain caused by my abdominal and rib age tumors. Ironically, though I'm on mscontin and msir for the cancer pain, those drugs do very little to help with the muscle pain, which I'm self-treating with Tylenol and Advil.

Anyway, for my birthday, my mother bought me a small TENS unit and we're still trying to figure out how to use it or if it will even be effective for helping with this muscular pain.

Has anyone out there used one of these things to help with pain management? Any suggestions for use? We've googled this from one end of the Internet to the next and have yet to find a resource that's human-readable for us non-medical types. And before I spend a lot of time trying to figure this out, I thought I'd see if anyone here had any experiences to share.

Many thanks!

-Q

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(20 replies, posted in Introductions!)

Oh, and I forgot to mention that I celebrated my 44th birthday on Jan 4. It may well be my last, and we had end helluva party just in case, but there's also reason to hope that I will live to see 45...

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(20 replies, posted in Introductions!)

I was finally able to get in to see Dr. Javli at MDA, and it was sort of a mixed blessing. In early December, I broke a rib leaning over in the car to pick something off the floorboard (second such time I've had a rib break under similar circumstances) and the pain from that injury coupled with "new" breakthrough cancer pain, and I ended up flat on my back for a little over 6 weeks. In that time, I was finally able to get in to see a pain management specialist, and we've only in the last couple of weeks been able to get the pain under control.

Traveling to Houston from Denton (where I live, just north of the DFW area) was a trying experience with the adjustments to the pain management not quote worked out. But I was able to make it through a single day of tests and meetings instead of spreading it out over several days.

First, Dr. Javli told me that I was already in "overtime" for this cancer, meaning that in his opinion based on the spread of the cancer when it was discovered, I probably should have been dead back in November. So I guess in a way I've already beaten the odds. But in his mind, since we are already in overtime, let's make the most of it.

I laid out three goals I had for working with him and the center at MDA:

1. I want to get the pain management under control.
2. I want to restore a good quality of life for the time I have remaining.
3. I want to be able to comfortably make several trips that we have planned overe the next 6 months.

He said that he felt my goals were very reasonable.

Given my poor response to the previous chemo treatments I've had, he said that conventional chemo is probably no longer worth pursuing. He sent my tissue samples off for further gene testing and started me on Tarceva while waiting for the results of those tests (I had not been taking any chemo in the 6 weeks between my last CT scan, which showed 12 new nodules in my right lung). He felt that I would tolerate the Tarceva well, and there was a good chance that it would match the treatment outlined once the gene tests came back. And in another blessing, we didn't have to fight insurance to get them to cover the Tarceva medication.

I've been on Tarceva for a week now, and I'm only just now seeing the signs of the beginnings of a rash on my chest. I've not had any diarrhea or any of the other symptoms sometimes seen with the drug. As to whether it's helping, we won't know until we do another set of scans. He specifically mentioned that the scans done at MDA will be used as a baseline for tracking treatment going forward.

Though my local oncologist isn't apparently vey pleased with the choice to go on Tarceva, I've asked him to get with Dr. Javli and discuss things doctor to doctor and not rely on me as a middle man to translate or convey messages between them.

Dr. Javli did order a bone scan that I need to get done this week to see if the CC has already spread into the bones which he suspects it has. (My broken rib has not shown up on any scan or x-ray anywhere, so I'm sure they think I'm identifying the ne breakthrough pain as cancer and not a broken rib; I maintain it's broken as I felt and heard the snap when I leaned over and it broke.) There is a tumor growing in that area, however, as I can feel the growth between my skin and the rib. Yuck. I also have another area that is starting to develop a similar pain, and I will go back to my local pain mgmt doctor and see if another round of nerve block injections would be increasingly effective or not.

I've felt better over the last few days than I have since I broke the rib on Nov 30. I have hope that I can resume a good quality of life that will allow me to make these last trips, including the Alaskan cruise n June that was supposed to be our 20th anniversary present, but we having to take it early. Last night was a bit of a setback in terms of pain, but I think it was an anomaly and not a sign of things to come.

So there's my latest update. Crossing my fingers that my QoL continues to see daily improvements and my strength and stamina, or what I can recover of those, will improve as well.

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(20 replies, posted in Introductions!)

Lainey -

Thanks for the reply. I do happen to think that Anna and I make a cute couple.  smile

As far as the nausea goes, I was taking just about everything they could give me to manage the nausea. I was wearing a Sancuso patch, was taking Zofran twice a day, Phenergan twice a day, not to mention the three days of Emend at the start of the treatment, along with whatever antiemetic and steroids they pumped into me as part of the infusion. I have always had bad nausea reactions to medications. Basically, if nausea/vomiting is listed as a side effect, even if it only happens to 1 in a million patients, I'll get sick. It was funny to read some of the antiemetic meds side effects, too - some of them point out that the antiemetic can cause upset stomach. Ha. Kinda counter-intuitive, isn't it?

So yes, they were throwing everything at me to try to combat the nausea, but it just wasn't effective. Some of the meds I just flat couldn't take. Reglan and Ativan both mess with my head something fierce and put me into an immediate panic state for hours until the medication wears off. Yes, there are some things worse than vomiting.

I'm sure it also didn't help that I was only a month out of surgery recovery and my body was really, really weak. That's why I'm hoping that I'll do better with the Taxol.

I'm also fortunate in that none of my tumors are or have been very large. The largest one I have now is just under 2cm in size. The tumor they pulled from my liver was only about 4cm in size. So we did catch the CC "early" in that I didn't have a tumor the size of a grapefruit or orange, but it had already spread to multiple locations including a couple of lymph nodes.

I'm not expecting that MD Anderson will have a miracle cure for me, I just want to get some of my quality of life back and hopefully extend the quantity a bit, too.

-Eriq

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(20 replies, posted in Introductions!)

It's hard to believe that it's taken me nearly 6 months to find this site. Given my background in online discussion boards and mailing lists, I somehow didn't think to look and see if there was anything like this for my cancer until within the last couple of weeks.

My name is Eriq Neale, I live in Texas, and I was diagnosed with CC back in March. I started having unusual abdominal pains in mid-January and finally went to see my doctor towards the end of February, because I was schedule to go on a week-long trip and wanted to see if he could do something about the pain while I was on the road so I wouldn't be uncomfortable while traveling. He did some blood work and found some liver enzymes that he thought were a little suspicious (on the high side of normal). He scheduled me in for a CT, which I had done on a Thursday (I was scheduled to leave town on Sunday). He called me Thursday afternoon to tell me that the CT showed something in my liver and he wanted me to have an MRI to get a better idea what was growing in my liver. He says that he arranged to have the MRI done the next day because he didn't want this to be "hanging over me" while I was traveling, but I think he saw something in the CT scan that scared him enough that he wanted the diagnosis ASAP. I had the MRI done the following morning. I got a call that Friday afternoon that they were concerned the growth might be cancer and that he wanted to schedule me for a biopsy ASAP. I cancelled my trip and scheduled the biopsy for the following week. The next night, Saturday, the abdominal pain got really intense and I started getting really nauseous, so we ended up going to the ER late that night. I got checked in for observation, and the hospitalist assigned to my case arranged for all kinds of tests to be performed. I'm probably fortunate that I did get checked into the hospital, as all those tests happened within the next two days, instead of having to schedule them as outpatient procedures. My EGD came back clean, as did the colonoscopy. Two days later, the day I was originally scheduled to have the biopsy, I had a PET scan done, and that's when the hospitalist confirmed that the tumors were likely cancer, as the PET scan showed several areas of likely cancerous growth, including a spot on the outside of the colon. I had the biopsy done the following day, and the pathology showed the tumor was likely from an upper-GI tumor, though none had been found.

We scheduled a procedure with a surgical oncologist at Methodist in Dallas to do a liver resection to remove the tumor from my liver as well as to clean out the other obvious cancerous growths in my abdomen. I had the surgery at the end of March. When he cut me open, he removed several cancerous growths that had shown up on the scans, but also saw small tumors on the underside of my diaphragm. Without major reconstructive surgery, he couldn't do anything about those tumors, so after completing the rest of the procedure successfully, he recommended that we follow up with chemotherapy. "Aggressive chemotherapy" in his words, because I was "young and in good physical health."

We started chemo at the first of May and started on Cisplatin and Gemcitabine. That next six weeks was probably the worst of my life. I lost 35 pounds because I couldn't eat thanks to the nearly-constant nausea. I couldn't move, I had to sleep in a trundle bed simply because we could lay it close to the floor so I could roll out of it and crawl into the bathroom to throw up. I tolderated the chemo so poorly that after two complete cycles, I was switched over to oxaliplatin, which did little to improve the symptoms. At the end of July, I stopped those chemo treatments and had another CT scan. Unfortunately, it showed continued growth of tumors in my abdomen, though the growth was very small. I started taking Xeloda in August, and my quality of life came back almost immediately. it wasn't a walk in the park on the Xeloda, but I never had any nausea, and I was able to start eating regularly and start regaining my strength. I also finally fully recovered from the liver surgery during that time, so I was definitely feeling better.

Unfortunately, the scan we did in November still showed continued growth of the cancer, so we're taking a two-week break and will be starting on Taxol next week. I'm told that it's well tolerated by chemo patients, but I'm not looking forward to it based on the reading I've done on Taxol, some of which ultimately led me to this site. Also, I broke a rib about 3 weeks ago, so I'm dealing with lots of additional pain meds, and i've basically spent the last two weeks flat on my back in bed. I'm hoping that I'll get some sense of "normalcy" back when the rib heals and I can cut back on the pain meds.

I'm trying to get in to MD Anderson and see if they have any other thoughts about my prognosis or additional treatments they might be able to offer. Unfortunately, I decided to wait until nearly Christmas to contact them, and they've been really, really slow about responding.

I have been keeping a journal over at Caring Bridge: http://caringbridge.org/visit/eriqneale
That has helped me cope with a lot of what I've been going through, as well as keeping our friends and family up to date with the latest information.

I'm looking forward to learning my way around here and finding out more about how people are living with this kind of cancer, what works and what doesn't as far as treatment, and anything else that might help me better deal with this strange (to me) disease.

Thanks for having this area for us to come to. I'm anxious to see what I can find here, as well as how I can contribute...

-Eriq