Personally, not really. I struggle with fatigue- but I’m on a lot of meds and in combination with all of my medical issues that’s normal. But as far as side effects such as others have mentioned, no- not at all.
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I take it and it makes a significant difference in my pain level. It does more for me than morphine, oxycodone or MS Contin (and tons of other meds). I hate when people make statements like “it does nothing for pain”. Because while it may not work for THEM in helping with their pain- it may work different for a different patient. It has helped me a lot and makes a HUGE difference in my pain level. I’ve taken it for years and can’t see not taking it.
I’m sorry for the delay in responding @clavallee2 My aunt has this- she was diagnosed in September of 2018 and she actually just finished her final round of chemo this month. She’ll have an MRI on Wednesday to check the brain tumor, but the last scan showed that it seemed to be gone (or as the specialists said, it’s no longer measurable). She went through 19 rounds of high dose Methotrexate and Rutiximab. As @mepowers mentioned this treatment had to be administered as an inpatient in the hospital. For my aunt it usually required at minimum a 6 day stay and sometimes up to 2 weeks. It just depends on how long your body takes to clear out the Methotrexate chemicals. They keep you until the chemicals get to a low enough level that it’s safe to leave. My aunt’s brain tumor was right on her brain stem so surgery wasn’t an option. It’s been a tough journey for us and we’re still trying to figure out how to live with this new normal. My aunt has a lot of brain impairments caused by the tumor, but hasn’t accepted them and it’s been a bit of a nightmare. But we’re grateful she’s doing so well. If you have any questions- I’d be happy to share our experiences.
I’ve personally found Gabapentin to worked really well for me. I’ve been on it for years for complex regional pain syndrome. I’m on a large combination of medications (for not just CRPS, but my heart and other issues) but the Gabapentin is one that I can definitely tell makes a big difference if I happen to miss a dose. I’m on a large amount 1200mg 3x day. So I definitely disagree to those that say it doesn’t do anything for pain. Because while it may not have worked for one patient, another patient may have a really good response to it. Each of us is different- we have different conditions and our bodies react to each medication in unique ways.
My Medicare/Medicaid coverage wouldn’t cover the program when I went through it (this was 10+ years ago). I ended up paying for it out of pocket. There are some financial assistance programs that you may be able to apply for through the Mayo Clinic and Saint Mary’s Hospital that could help though.
@2thames I’m guessing you’ve probably already gone through the program since this was posted a while ago. I went through the program ages ago (10+ years). I stayed at quality inn & suites during my stay. The price was reasonable and they have mini suites with separate bedroom/living areas which is so nice for days when I felt sick. I could lay in bed but my mother could be in the living room or Kitchette and not disturb me. I’d also recommend contacting your insurance company. I’m currently here at the Mayo for treatment and my insurance (United healthcare community plan) is covering my hotel. However during my previous trips I was with blue cross blue shield, they didn’t cover anything.
My aunt has Primary Central Nervous System Lymphoma. She was diagnosed in Nov. of last year. The tumor was located right above the brain stem. She’s gone through 14 rounds of high dose chemo (methotrexate and rotuxin) and it seems to have gotten rid of the tumor (two months ago the Oncologist said the tumor was no longer measurable). The tumor caused serious changes in her- safety awareness, impatience, anger, refusal to listen to doctors, etc. Plus things like left sided weakness, memory problems, difficulty talking/communicating, difficulty doing really anything complicated. She’s a completely different person now. The doctors have said that she’s unable to be alone so my mother and I take turns staying with her as her caretaker. Is there a possibility of these issues improving? Or are they permanent? While she had the tumor we could see marked improvements as it got smaller during each round of chemo. But now that the tumor is gone I’ve stopped noticing any other improvements. I know the tumor caused damage while it was in the brain. Does that damage remain? Also as a 2nd question- I’m not sure if you’d be addressing treatment questions or just tumor questions. She was doing really well with her treatments. She did chemo every other week for 8 rounds then she was switched to one round per month (it usually lasted about 1.5 weeks). Each month we would see slight improvements neurologically. However two months ago she drastically got worse instead of better. It was like we went back 4 months in reverse. The next month the same thing happened instead of an improvement she seemed to get worse (balance was worse, more issues talking, more confusion and hallucinations). The doctors did scans and said it wasn’t the tumor returning but felt it may actually be that the methotrexate was affecting her neurologically. Have you heard of this? And if so how do you treat this? Do you continue treatment as scheduled or do you alter treatment?
Thank you so much for your advice/info