Uterine Stage 1B Clear Cell/Serous - Neuropathy

ediegram

Hello Everyone,
I am reaching out to for my Mom who was diagnosed with Stage 1B Uterine cancer. Her pathology showed clear cell and serous cells. She had a full hysterecotomy - lymph nodes, washings all were clear. This is the good news!

Her Dr suggested a 6 treatment as a preventative of Taxol and Carboplatin. She just completed her 2nd treatment. After the first treatment, about 3 days after, she started having the Neuropathy symptoms. Her legs ache in the worse way and she isn't getting much sleep AT ALL. The symptoms lasted well into the 2nd week after treatment. She is beginning to have the same symptoms after the 2nd treatment, so looks like this may be the same. Only difference is she is much weaker this time. She has tried several sleep aids, and nothing seems to work. At best, she might get 2 hours of sleep, will wake up and take another pill for another 3 hours of sleep. She is also 76 years old.

Do any of you have any suggestions for the leg achiness? I believe most of this is a result of the red blood cell booster that she gets after treatment. Her treatments are on Tues, and the Dr has her come in for fluids only on Thur/Fri. The shot is given Friday. Any suggestions for sleep and rest?

Thank you all so much in advance!
Edie

cleo

Aching legs
Edie there is some very good information on the thread of 3/20/11. It certainly gave me a great deal of help.

lindaprocopio

cleo said:

Aching legs
Edie there is some very good information on the thread of 3/20/11. It certainly gave me a great deal of help.

The sleeplessness is probably steroid-induced, & normal.
Your mother is probably receiving significant doses of steroids with her chemo to help ward off nausea, etc. (sometimes given in the IV right before chemo, usually as a part of the little cup of pre-meds she takes right before her chemo infusion). We call it "hampster days" here because there are usually 3 nights where the steroids keep you awake and scurrying around all night like a nocturnal animal. You should mention it to your mother's oncologist, but please know that it is perfectly normal and that your mother should be able to sleep after the steroids work their way through her system. She should rest, but I know I could never SLEEP for 3 days, and didn't even bother with sleeping pills, since sleep always returned once the steroids wore off. Encourage her to drink 64 ounces of water and decaffienated tea daily to push the lingering drugs out of her system.

The neuropathy may disappear after she finishes carbo/taxol; I know it did for me. If it is just minor toe and finger tingling, I wouldn't be too concerned. If it is throbbing pain or more pervasive, though, do mention it to her oncologist. Is she getting a Nuelasta shot the day after her treatments? Those are famous for causing bone pain, again last ing only a couple of days and no permanent damage done. ((((Hugs))))

ediegram

cleo said:

Aching legs
Edie there is some very good information on the thread of 3/20/11. It certainly gave me a great deal of help.

3/20/11
Thanks so much. I just read all of the post and asked my Mom to check w/her Dr for the supplement.

ediegram

lindaprocopio said:

The sleeplessness is probably steroid-induced, & normal.
Your mother is probably receiving significant doses of steroids with her chemo to help ward off nausea, etc. (sometimes given in the IV right before chemo, usually as a part of the little cup of pre-meds she takes right before her chemo infusion). We call it "hampster days" here because there are usually 3 nights where the steroids keep you awake and scurrying around all night like a nocturnal animal. You should mention it to your mother's oncologist, but please know that it is perfectly normal and that your mother should be able to sleep after the steroids work their way through her system. She should rest, but I know I could never SLEEP for 3 days, and didn't even bother with sleeping pills, since sleep always returned once the steroids wore off. Encourage her to drink 64 ounces of water and decaffienated tea daily to push the lingering drugs out of her system.

The neuropathy may disappear after she finishes carbo/taxol; I know it did for me. If it is just minor toe and finger tingling, I wouldn't be too concerned. If it is throbbing pain or more pervasive, though, do mention it to her oncologist. Is she getting a Nuelasta shot the day after her treatments? Those are famous for causing bone pain, again last ing only a couple of days and no permanent damage done. ((((Hugs))))

Thanks!
I sure hope it disappears! She is 76 and already having some problems walking. She hasn't had any numbness really, it's mainly bone and joint pain which I hope is from the Nuelasta and will go away completely.

Thanks both of you for your replies! This is a difficult journey that I am experiencing with her, I never realized how many people are effected by this terrible disease. You are all champions to me

Edie

sleem

Neuropathy
MD Anderson Dr. put me on to B6 tablets a day for Neuropathy. It helped me and I continue to take 1 per day 2 years after chemo.

Northwoodsgirl

Edies Mom
So much of what your Mom is experiencing is "normal" for the chemo she is taking. Remember she has just had surgery and now chemo. Make sure that her magnesium levels are not too low. I would have leg pain but about after my 3 round of chemo they gave me IV magnesium and my leg pains got better. Please advocate for your Mom if she needs help with symptom management. Call the nurse practioner of her gyn/oncologist surgeon and tell them the specifics of symptoms and pain level. Maybe she needs some Ativan for anxiety to help her sleep also. Yes, the steroids pre chemo give you an energy buzz for a few days after chemo and can change sleep pattern. Please keep in touch with this board so we can help you help our Mom with her fight against cancer.
Lori

bots

Northwoodsgirl said:

Edies Mom
So much of what your Mom is experiencing is "normal" for the chemo she is taking. Remember she has just had surgery and now chemo. Make sure that her magnesium levels are not too low. I would have leg pain but about after my 3 round of chemo they gave me IV magnesium and my leg pains got better. Please advocate for your Mom if she needs help with symptom management. Call the nurse practioner of her gyn/oncologist surgeon and tell them the specifics of symptoms and pain level. Maybe she needs some Ativan for anxiety to help her sleep also. Yes, the steroids pre chemo give you an energy buzz for a few days after chemo and can change sleep pattern. Please keep in touch with this board so we can help you help our Mom with her fight against cancer.
Lori

Taxol induced neuropathy
Edie, I was 71 when I was diagnosed with exactly the same stage and grade of uterine cancer as your Mom. Also all of the 38 lymph nodes they took and the washings were clear. I was told that when you are older, chances are the neuropathy will not completely go away, and my doctor said that if the neuropathy was too bad, he would stop the chemo after three. I started to have the numbness in my toes and pain in my legs as well as some numbness in my arms and fingers. My oncologist did stop the treatment after the third chemo. Ovarian cancer research shows that there is more chance of recurrence with only three chemo treatments but that length of life is not increased with more chemo. I still have numbness in my toes and some leg pain as well as slight numbness in my fingers. I am so glad I did not continue with the chemo. My last chemo was in September of 2009. I saw my oncologist Monday and have no signs of recurrence so far.
Bots

Pat51

Achiness In Legs
I think that the aches that your Mom is having in her legs is from the Neulasta shots. I am currently taking carbo/taxotere. I am also getting Neulasta shots given 24 hours after each treatment. I have leg and bone pain. I also have back pain. My oncologist prescribed vicodine for the pain. It really helped a lot. My doctor suggest Tylenol PM or Benadryl to help me sleep when necessary.

I am also having a hard time with the treatments so I can identify with how your Mom is feeling. I am usually down for 7-12 days after treatment, then another few days to gain strength. I am better just in time for the next treatment.

I hope that your Mom starts to feel better soon.

Pat

ediegram

bots said:

Taxol induced neuropathy
Edie, I was 71 when I was diagnosed with exactly the same stage and grade of uterine cancer as your Mom. Also all of the 38 lymph nodes they took and the washings were clear. I was told that when you are older, chances are the neuropathy will not completely go away, and my doctor said that if the neuropathy was too bad, he would stop the chemo after three. I started to have the numbness in my toes and pain in my legs as well as some numbness in my arms and fingers. My oncologist did stop the treatment after the third chemo. Ovarian cancer research shows that there is more chance of recurrence with only three chemo treatments but that length of life is not increased with more chemo. I still have numbness in my toes and some leg pain as well as slight numbness in my fingers. I am so glad I did not continue with the chemo. My last chemo was in September of 2009. I saw my oncologist Monday and have no signs of recurrence so far.
Bots

Bots,
It's so nice to meet someone else that has the same cancer/stage that my Mom has! There really aren't many that I have seen with Type II.

Mom hasn't had much of the numbness that a lot of people mention. This past week her toes felt a little numb after treatment, but that went away after one day. It sounds like the shot she gets is the source of her discomfort.

A friend of mine said that her mom swore by aloe vera juice while going through chemo. I have read that it promotes good cell growth and is great for your digestive system. Was wondering if anyone else has heard of this benefit as well? Mom called her oncologist and they told her it was fine, that there are good health benefits from this!

Thanks everyone for your support!!!

Songflower

Pat51 said:

Achiness In Legs
I think that the aches that your Mom is having in her legs is from the Neulasta shots. I am currently taking carbo/taxotere. I am also getting Neulasta shots given 24 hours after each treatment. I have leg and bone pain. I also have back pain. My oncologist prescribed vicodine for the pain. It really helped a lot. My doctor suggest Tylenol PM or Benadryl to help me sleep when necessary.

I am also having a hard time with the treatments so I can identify with how your Mom is feeling. I am usually down for 7-12 days after treatment, then another few days to gain strength. I am better just in time for the next treatment.

I hope that your Mom starts to feel better soon.

Pat

Leg Pain
There are different types of neuropathy; I have the type that is very painful in my toes and fingers. I do not have numbness or tingling. I found lyrica to be a wonder drug for me. I also took the carbo/taxol with a week of steroids. With that I had to take a sleeping pill. Also, ativan is used for cancer patients. It does not hurt the liver and is a benzodiazepine. Yes, over time it can be addictive. I have never had any problem coming off it at all. I had to take a pain med during treatment as mine was so severe. But I took agressive treatment for breast cancer 11 years ago and that is cumulative with damage to my nervous system.

Years ago women were hospitalized for three days with carboplatinum. My Doctor told me that sometimes if you have a hard time with that you might have to take the ativan every two hours! I ended up taking it every four until I got through it. Years ago, they hospitalized you and kept you sedated and now we go home. With that info I can see where she feels the ativan is needed.

Neuropathy peeks and six months after chemo and then gets better. After a year it usually is what your are left with. But I am happy to say that mine is getting better. The other thing we need to make sure is that your mother's leg pain is not vascular. Does she get up at night and stretch her legs? That could be coming from a blockage in a blood vessel and she needs to evaluated and treated by a vascular physican.

Your friend, Diane

ediegram

Songflower said:

Leg Pain
There are different types of neuropathy; I have the type that is very painful in my toes and fingers. I do not have numbness or tingling. I found lyrica to be a wonder drug for me. I also took the carbo/taxol with a week of steroids. With that I had to take a sleeping pill. Also, ativan is used for cancer patients. It does not hurt the liver and is a benzodiazepine. Yes, over time it can be addictive. I have never had any problem coming off it at all. I had to take a pain med during treatment as mine was so severe. But I took agressive treatment for breast cancer 11 years ago and that is cumulative with damage to my nervous system.

Years ago women were hospitalized for three days with carboplatinum. My Doctor told me that sometimes if you have a hard time with that you might have to take the ativan every two hours! I ended up taking it every four until I got through it. Years ago, they hospitalized you and kept you sedated and now we go home. With that info I can see where she feels the ativan is needed.

Neuropathy peeks and six months after chemo and then gets better. After a year it usually is what your are left with. But I am happy to say that mine is getting better. The other thing we need to make sure is that your mother's leg pain is not vascular. Does she get up at night and stretch her legs? That could be coming from a blockage in a blood vessel and she needs to evaluated and treated by a vascular physican.

Your friend, Diane

Still Weak
Mom was doing a lot better after IV fluids.. but yesterday she was very weak. I work from home on Tue/Fri so I work from her apartment to help out and walk her dog for her. I picked up lunch (nothing wrong with her appetite! Praise the Lord!). I am going to try and find the supplements for her to start taking. I have heard B6 and also L-Glusamine?

How do you all handle the weakness? She's sleeping better but is just very tired.

RoseyR

ediegram said:

Still Weak
Mom was doing a lot better after IV fluids.. but yesterday she was very weak. I work from home on Tue/Fri so I work from her apartment to help out and walk her dog for her. I picked up lunch (nothing wrong with her appetite! Praise the Lord!). I am going to try and find the supplements for her to start taking. I have heard B6 and also L-Glusamine?

How do you all handle the weakness? She's sleeping better but is just very tired.

Neuropathy from Taxol/Carboplatin


My integrative doctor prescribed one teaspoon of glutamine in a glass of water three times a day starting the day before chemo and during the first four days of chemo to prevent, or at least lessen, neuropathy. After three rouds of carbo/taxol, following this regime, I had no numbness and tingling at all. Several nutritionists also recommend 400 milligrams a day of vitamin E succinate--but it must be succinate (dry form of E), not tocopherols.

Once she is finished chemo, not sure that glutamine will help that much but what might are alpha-lipoic acid (400-600 mgs a day) and adequate B-12 and vitamin D blood levels. B-12 should be at least 500 and if lower, she should take B-12 lozenges under her tongue (sublingual tablets) twice a day of 1,000 mcgs each. Best form is METHOcobalamyn. Her vitamin D level should be at least 40; if lower, she should take two to three drops a day of LIqui-D on a spoon until her levels come up. You can buy it online and i's more absorbable than capsules.

There is also a product called "Nerve Support Formula" that you can find online comprised of a derivative of vitamin B1 along with another B vitamin; people with longstanding neuropathy claim to have been helped considerably by it.

Finally: the best web site on neuropathy I've seen is Life Extension's. Just google their name along with "peripheral neuropathy" and you'll see their suggestions. Their board of directors are all bonafide doctors and researchers, many of them prominent.

Best,
Rosey R