Update from Lou Ann
chemo round #30 complete today. More tired from the trip 5 days in a row than the actual chemo so far. Topotecan infusion was only 30 minutes with only one premed, Decadron. So far almost no side effects, waiting to see what next week brings. So hoping it works at leasty to keep me stable. I had my 1st pain free day today in about 6 weeks. yesterday a cousin asked if I might have a bladder infection. went to my GP and I do have a mild infection. Doc gave me an antibiotic. I not know if it was the antibiotic or the morphine extended release tablets that worked, but my back is not hurting. And I don't care which it is. Hugs and prayers to all of you. Lou Ann
Comments
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Hooray for Lou Ann!! So
Hooray for Lou Ann!! So happy to hear you have no pain and I hope it lasts.
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I'm glad you at least you had
I'm glad you at least you had one day of being pain free. Hopefully it's the start of many, many more days!
(((Lou Ann)))
Love,
Eldri
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Lou Annmolimoli said:great news
Lou Ann, My heart is glad for your good news. The sun is coming out.
Moli - giving thanks for no pain and hoping for NED.
That is great news! I hope you continue to have an "easy" time with this chemo.
Pain free has to be a huge relief for you. Let's hope it stays that way!
Love and Hugs,
Cindi
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Lou Ann I am gladncg007 said:Great news and hoping the
Great news and hoping the pain free continues!
nancy
to hear that you have finally gotten relief from the back pain. No one should suffer like you have for 6 weeks. I hope all continues to improve for you with treatment.
Warm Wishws,
Cathy
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Lou Ann
I had UTI's all through my chemo. As soon as I got off the antibiotic, I developed another one. My oncologist sent me to a urologist to see if something else was wrong. I had a cystoscopy, but no kidney stones were found. They were also looking for a "communication" (hole) between my urethra and vagina or even one between my vagina and my digestive tract, but none was found. I usually have two or three UTI's every year anyway. I guess the constant ones I had during chemo must have been from my immune system being compromised by the chemo. Hope you don't get another one after you treat this one.
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My firstpinky104 said:Lou Ann
I had UTI's all through my chemo. As soon as I got off the antibiotic, I developed another one. My oncologist sent me to a urologist to see if something else was wrong. I had a cystoscopy, but no kidney stones were found. They were also looking for a "communication" (hole) between my urethra and vagina or even one between my vagina and my digestive tract, but none was found. I usually have two or three UTI's every year anyway. I guess the constant ones I had during chemo must have been from my immune system being compromised by the chemo. Hope you don't get another one after you treat this one.
I though I just had bladder irritatiton, but messaged my drs nurse Friday, she replied that I was to get a UA just to make sure it wasn't a UTI. Messaged my primary dr's nurse for the UA, she set up a lab that I could do on my lunch hour, later in the day, logged back in to my portal and found it was indeed a UTI. They had already sent the pharmacy a prescription, and I'm doing much better today (well except for the mouth sore). I'm hoping I don't follow up with more. Thanks for the knowledge.
On the other hand, isn't technology great. I didn't have to wait on the phone for any of this. Patient portals with doctors seem to get as much done as playing phone tag. Hugs Nancy
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Nancyunknown said:My first
I though I just had bladder irritatiton, but messaged my drs nurse Friday, she replied that I was to get a UA just to make sure it wasn't a UTI. Messaged my primary dr's nurse for the UA, she set up a lab that I could do on my lunch hour, later in the day, logged back in to my portal and found it was indeed a UTI. They had already sent the pharmacy a prescription, and I'm doing much better today (well except for the mouth sore). I'm hoping I don't follow up with more. Thanks for the knowledge.
On the other hand, isn't technology great. I didn't have to wait on the phone for any of this. Patient portals with doctors seem to get as much done as playing phone tag. Hugs Nancy
They can give you a rinse for your mouth sores. I only had one and it was painful!
You may already know this but didn't want to assume and then you stay in pain for nothing!
Love and Hugs,
Cindi
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Must be the weekunknown said:My first
I though I just had bladder irritatiton, but messaged my drs nurse Friday, she replied that I was to get a UA just to make sure it wasn't a UTI. Messaged my primary dr's nurse for the UA, she set up a lab that I could do on my lunch hour, later in the day, logged back in to my portal and found it was indeed a UTI. They had already sent the pharmacy a prescription, and I'm doing much better today (well except for the mouth sore). I'm hoping I don't follow up with more. Thanks for the knowledge.
On the other hand, isn't technology great. I didn't have to wait on the phone for any of this. Patient portals with doctors seem to get as much done as playing phone tag. Hugs Nancy
for UTI's. I did indeed have a UTI only it wasn't a bladder infection, it was a kidney infection. Yikes! Ended up in the ER Thursday night getting IV antibiotics, pain meds and then anti-nausea stuff. By the time I left the ER, I actually felt worse than when I went in. Luckily, the next morning I felt better, but... I'm getting Cipro. Has anyone had this stuff? After I got home and pulled out the pamphlet for this stuff, I found out that one of the potential side effects is tendon rupture or tendonitis. And this could occur months after taking it. What?!! If I had known that before they began pumping it into me, I might have asked if they could give me something else. Guess I won't be doing a lot of exercising for the next few weeks. Don't really want to complain, but it's also wreaking havoc with my digestive system, just as things were getting back to normal. I know antibiotics can be wonderful, but I hate what they can do to your body while they're working.
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I hope you are much betterEditgrl said:Must be the week
for UTI's. I did indeed have a UTI only it wasn't a bladder infection, it was a kidney infection. Yikes! Ended up in the ER Thursday night getting IV antibiotics, pain meds and then anti-nausea stuff. By the time I left the ER, I actually felt worse than when I went in. Luckily, the next morning I felt better, but... I'm getting Cipro. Has anyone had this stuff? After I got home and pulled out the pamphlet for this stuff, I found out that one of the potential side effects is tendon rupture or tendonitis. And this could occur months after taking it. What?!! If I had known that before they began pumping it into me, I might have asked if they could give me something else. Guess I won't be doing a lot of exercising for the next few weeks. Don't really want to complain, but it's also wreaking havoc with my digestive system, just as things were getting back to normal. I know antibiotics can be wonderful, but I hate what they can do to your body while they're working.
I hope you are much better today Chris. I'm with you, I read side effects before I take anything these days. In fact, the Gabapentin(sp) that my Radiologist gave me to try for my vulvadynia has Dementia listed as a side effect. My Mom had Alzheimer's so I opted not to use it. Way too afraid of anything that can impact my brain if I can avoid it.
Speaking of stuff occurring later.... My neuropothy is getting more painful now as my numbness is wearing off. My toes, heels and the top of my left foot hurts like crazy. I can't put any pressure on to top of my foot and stretching my achiles tendon really hurts. My legs are also more achy now. I have been using the elyptical instead of the brisk walking I was doing in hopes that would be easier on them but it doesn't seem to make a difference. On a good note: my breathing has improved a lot and I can go 20 minutes at 4.5 - 5.0 MPH. That is huge progress! I should post this on the chemo thread! Copy Paste in the works!
Love and Hugs,
Cindi
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Cindi, I'm the same way - ITeddyandBears_Mom said:I hope you are much better
I hope you are much better today Chris. I'm with you, I read side effects before I take anything these days. In fact, the Gabapentin(sp) that my Radiologist gave me to try for my vulvadynia has Dementia listed as a side effect. My Mom had Alzheimer's so I opted not to use it. Way too afraid of anything that can impact my brain if I can avoid it.
Speaking of stuff occurring later.... My neuropothy is getting more painful now as my numbness is wearing off. My toes, heels and the top of my left foot hurts like crazy. I can't put any pressure on to top of my foot and stretching my achiles tendon really hurts. My legs are also more achy now. I have been using the elyptical instead of the brisk walking I was doing in hopes that would be easier on them but it doesn't seem to make a difference. On a good note: my breathing has improved a lot and I can go 20 minutes at 4.5 - 5.0 MPH. That is huge progress! I should post this on the chemo thread! Copy Paste in the works!
Love and Hugs,
Cindi
Cindi, I'm the same way - I read the side effects of everything. I took the Gabapentin for the night foot pain. The muscles around my eyes had been spasming from chemo but the Gabapentin made it a LOT worse. I looked up side effects and sure enough, muscle spasms of the eyes were listed. But, the good thing was that as soon as I stopped taking it, ALL the spasming stopped so.....I guess it cured that - LOL!! I know even asprin can kill but after what we've all been through with side effects of chemo, I don't think we can be too careful! I just looked again at Taxotere to see if losing fingernails is listed and I see it now is along with permanent hair loss - but they didn't add that until December of 2015, after I was done. Who knows what the long term side effects of this stuff is or when used in combination?
Love,
Eldri
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GabapentinEZLiving66 said:Cindi, I'm the same way - I
Cindi, I'm the same way - I read the side effects of everything. I took the Gabapentin for the night foot pain. The muscles around my eyes had been spasming from chemo but the Gabapentin made it a LOT worse. I looked up side effects and sure enough, muscle spasms of the eyes were listed. But, the good thing was that as soon as I stopped taking it, ALL the spasming stopped so.....I guess it cured that - LOL!! I know even asprin can kill but after what we've all been through with side effects of chemo, I don't think we can be too careful! I just looked again at Taxotere to see if losing fingernails is listed and I see it now is along with permanent hair loss - but they didn't add that until December of 2015, after I was done. Who knows what the long term side effects of this stuff is or when used in combination?
Love,
Eldri
I have been taking Gabapentin for over a year due to the neuropathy; the alternative is just too much pain. About 1/3 of my feet from toes back is numb but with lots of pain. If I miss a dose I really know it. I don't like taking anything more than I need but!!! I tried Lyrica and that was a disaster. About the only thing that really helps is a warm blanket on my feet. I am sitting at the computer with a hotpad on the floor turned on low. I just discovered doing this and it is great. Necessity is the mother of invention. I'm two years post chemo and the feet do not get better. Not significantly worse but are definitely the gift that keeps on giving from chemo. I also have a really sore and sometime swollen spot on the top of my left foot. Other than that I'm fine and feel good. No dementia just short term memory called CRS(can't remember sh&*)
Joanne
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Joannejoannewtta said:Gabapentin
I have been taking Gabapentin for over a year due to the neuropathy; the alternative is just too much pain. About 1/3 of my feet from toes back is numb but with lots of pain. If I miss a dose I really know it. I don't like taking anything more than I need but!!! I tried Lyrica and that was a disaster. About the only thing that really helps is a warm blanket on my feet. I am sitting at the computer with a hotpad on the floor turned on low. I just discovered doing this and it is great. Necessity is the mother of invention. I'm two years post chemo and the feet do not get better. Not significantly worse but are definitely the gift that keeps on giving from chemo. I also have a really sore and sometime swollen spot on the top of my left foot. Other than that I'm fine and feel good. No dementia just short term memory called CRS(can't remember sh&*)
Joanne
Hilarious! I think all chemo users understand that one and joined the CRS club at some point!
I'm sorry to hear your feet still hurt though darn it! Two years is a long time for side effects. I hope it goes away.
I'm going to try the heating pad and see if that helps me. Thanks for the tip!
Love and Hugs,
Cindi
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Cipro is the antibiotic my GPEditgrl said:Must be the week
for UTI's. I did indeed have a UTI only it wasn't a bladder infection, it was a kidney infection. Yikes! Ended up in the ER Thursday night getting IV antibiotics, pain meds and then anti-nausea stuff. By the time I left the ER, I actually felt worse than when I went in. Luckily, the next morning I felt better, but... I'm getting Cipro. Has anyone had this stuff? After I got home and pulled out the pamphlet for this stuff, I found out that one of the potential side effects is tendon rupture or tendonitis. And this could occur months after taking it. What?!! If I had known that before they began pumping it into me, I might have asked if they could give me something else. Guess I won't be doing a lot of exercising for the next few weeks. Don't really want to complain, but it's also wreaking havoc with my digestive system, just as things were getting back to normal. I know antibiotics can be wonderful, but I hate what they can do to your body while they're working.
Cipro is the antibiotic my GP put me on and the chemo nurse on Friday said that is a common one for bladder infection. So sad this had to hit you too. Certainly isn't any fun. Hugs and prayers, Lou Ann
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Nueropathy ]]TeddyandBears_Mom said:I hope you are much better
I hope you are much better today Chris. I'm with you, I read side effects before I take anything these days. In fact, the Gabapentin(sp) that my Radiologist gave me to try for my vulvadynia has Dementia listed as a side effect. My Mom had Alzheimer's so I opted not to use it. Way too afraid of anything that can impact my brain if I can avoid it.
Speaking of stuff occurring later.... My neuropothy is getting more painful now as my numbness is wearing off. My toes, heels and the top of my left foot hurts like crazy. I can't put any pressure on to top of my foot and stretching my achiles tendon really hurts. My legs are also more achy now. I have been using the elyptical instead of the brisk walking I was doing in hopes that would be easier on them but it doesn't seem to make a difference. On a good note: my breathing has improved a lot and I can go 20 minutes at 4.5 - 5.0 MPH. That is huge progress! I should post this on the chemo thread! Copy Paste in the works!
Love and Hugs,
Cindi
I didn't have any problems with nueropathy until I was completely done with my 1st 6 rounds of chemo. Now it doesn't want to go away. I have had some success with the GabapentiN if I add Lorazapan to it. I was given that in September when I had the bowel blockage for severe nausia and throwing up. It did nothing for the throwing up, but my feet stopped hurting. Since I am not on Taxol or Doxil anymore I am hoping I will get a break in the Nueropathy department, but it is still to early to tell. Hugs and prayers, Lou Ann
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LOL, Joanne!! I also havejoannewtta said:Gabapentin
I have been taking Gabapentin for over a year due to the neuropathy; the alternative is just too much pain. About 1/3 of my feet from toes back is numb but with lots of pain. If I miss a dose I really know it. I don't like taking anything more than I need but!!! I tried Lyrica and that was a disaster. About the only thing that really helps is a warm blanket on my feet. I am sitting at the computer with a hotpad on the floor turned on low. I just discovered doing this and it is great. Necessity is the mother of invention. I'm two years post chemo and the feet do not get better. Not significantly worse but are definitely the gift that keeps on giving from chemo. I also have a really sore and sometime swollen spot on the top of my left foot. Other than that I'm fine and feel good. No dementia just short term memory called CRS(can't remember sh&*)
Joanne
LOL, Joanne!! I also have some of that CRS - I've become the queen of lists (then I lose my list). I am lucky - both my feet, especially my toes, are numb which really affects my balance but most of the pain is gone. My left hip is what is still bothering me. Between the balance issue and the pain in the hip, I am VERY careful when I walk especially when I first get up or there's ice. As you said "the gift that keeps on giving from chemo."
Please keep posting!!! It's so inspiring that you have gone to NED and are living a good life. I NEED to see what is possible.
Love,
Eldri
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