Uterine Papillary Serous Carcinoma (UPSC): any others here???

pjba11

Thank you
Thank you both for your kind words and understanding. Tammy has her service set for 11:00 today. We have had terrible weather. -40 wind chill and 10 inches of new snow. My husband has the snow blower out to do our farms and the roads between. Our office in town is still snowed in. Nasty day. But the sun is shining bright. Our daughter is waiting to slide on the tall snow pile her dad put up for the kids to play on. No school today. Christmas baking is done!! At least we had something fun to do while were had a storm. Hope you are all feeling well and God Bless.

lindaprocopio

Marge's 'liver' blood test today??
Doesn't Marge have her blood work today to see if her high liver count came down? She is in my thoughts and prayers today, as is Peggy with the funeral. Everyone has been so absent from here, and although I hope it is because the Christmas rush is on, I worry that each of us is dealing with some private demons and doesn't want to bring down the others. My cough lingers on, but I have no fever and can sleep at night if I take a Muscinex (sp?). I have been a little light-headed and am trying not to drive much as I can tell I am 'off' a little. And I'm battling with Hershey Medical, as they mis-coded my surgery and left me with another uncovered $4,000 bill. I have been emotionally pretty fragile, in a way I don't like, with self-pity creeping in as I miss my grandchildren but they are busy with Christmas activities and, although they are very sweet to me when they see me, I know that they are happier to be running to the mall and going to holiday parties and I totally understand and agree. But the "poor me's" seem to be creeping in a little bit each day. I always have LOVED Christmas, but now I understand why so many people get blue at Christmastime. Anyhooooo, I am mixing up a batch of chocolate chip cookies and plan to dip chocolate covered pretzels this afternoon. That should cheer me up! That, and shaking this damn cough.

Deanna: you look so gorgeous and happy in your photo! I love that 'spot color' effect on black-and-white photography!

pjba11

tis the season
Sorry to hear you are not quite as good as you would like to be. We HAVE had a quiet time here on our site. I also emailed all of you last week and did not hear if anyone got that. My email on Yahoo was messed up for a few days so it may have all gone into the junk mail trash cycle. We should somehow come up with a back up plan that if any of us end up in the hosp. etc that someone could come on line and tell us so we could send flowers or cards. (I hope we hear from Marge.) How is your hearing Linda? I noticed with my chemo when I felt a little 'off' it was my hearing. Chemo does have that side effect very often. I also have a left over 'chemo cough'. My lung Dr. says it is now classified as a nuisence (sp) cough. We have had a lot of flu bugs here in Mn. Now with our BRISK weather maybe the air will be debugged a bit. I have to go to SD Monday to see my dad and take him lots of baked things. He will be coming to Mn for Christmas day too. I kept my 1 year old grandson overnight Saturday. He loves the tree. He was so good about not touching the decorations. He would put his little nose right up to them but after we told him no he did not touch them with his hands. I really complimented his mom when I took him home at what a great job she is doing to have him mind us so well. My oldest grandson is 17 and he was supposed to have his concert at school tonight.... no school. I would think they would not have the concert either. Hope to hear how all of you are doing. My thoughts and prayers are with you many times a day.

deanna14

pjba11 said:

tis the season
Sorry to hear you are not quite as good as you would like to be. We HAVE had a quiet time here on our site. I also emailed all of you last week and did not hear if anyone got that. My email on Yahoo was messed up for a few days so it may have all gone into the junk mail trash cycle. We should somehow come up with a back up plan that if any of us end up in the hosp. etc that someone could come on line and tell us so we could send flowers or cards. (I hope we hear from Marge.) How is your hearing Linda? I noticed with my chemo when I felt a little 'off' it was my hearing. Chemo does have that side effect very often. I also have a left over 'chemo cough'. My lung Dr. says it is now classified as a nuisence (sp) cough. We have had a lot of flu bugs here in Mn. Now with our BRISK weather maybe the air will be debugged a bit. I have to go to SD Monday to see my dad and take him lots of baked things. He will be coming to Mn for Christmas day too. I kept my 1 year old grandson overnight Saturday. He loves the tree. He was so good about not touching the decorations. He would put his little nose right up to them but after we told him no he did not touch them with his hands. I really complimented his mom when I took him home at what a great job she is doing to have him mind us so well. My oldest grandson is 17 and he was supposed to have his concert at school tonight.... no school. I would think they would not have the concert either. Hope to hear how all of you are doing. My thoughts and prayers are with you many times a day.

Hello Ladies!
Sorry to be so quiet. I had a really busy weekend and now I am exhausted, but having a relaxing day today.
Peggy, I didn't get an email, so maybe it did get caught up in your junk mail. I've been wanting to ask you if you ever had any shortness of breath with radiation? It mostly comes when I am really tired and it scares the crap out of me. I don't have my next treatment until Wednesday and I guess I will ask the doctor. I don't know, maybe I'm coming down with something. It is soooo scary to develop a new symptom...
I'm happy that you had a good time with your grandson.
Linda, thank you for the compliment on the picture. It sounds like you are feeling pretty good after chemo #2. I sure hope Marge is doing okay, she hasn't posted much lately.
I've got a countertop full of baking goods and need to get busy. Can't seem to find the energy. I will be happy to finish up my radiation next week, maybe I will begin to get some energy back. Then it is on to chemo in February.
You girls take care. You are in my thoughts and prayer. Love and hugs.

deanna14

deanna14 said:

Hello Ladies!
Sorry to be so quiet. I had a really busy weekend and now I am exhausted, but having a relaxing day today.
Peggy, I didn't get an email, so maybe it did get caught up in your junk mail. I've been wanting to ask you if you ever had any shortness of breath with radiation? It mostly comes when I am really tired and it scares the crap out of me. I don't have my next treatment until Wednesday and I guess I will ask the doctor. I don't know, maybe I'm coming down with something. It is soooo scary to develop a new symptom...
I'm happy that you had a good time with your grandson.
Linda, thank you for the compliment on the picture. It sounds like you are feeling pretty good after chemo #2. I sure hope Marge is doing okay, she hasn't posted much lately.
I've got a countertop full of baking goods and need to get busy. Can't seem to find the energy. I will be happy to finish up my radiation next week, maybe I will begin to get some energy back. Then it is on to chemo in February.
You girls take care. You are in my thoughts and prayer. Love and hugs.

Marge
Marge, are you out there? After reading your post from last week again, do you think that your ankle pain was from the radiation? I've noticed that my feet have been hurting often, just aching a lot, also my legs and hips. I thought maybe the leg and hip discomfort was from the position they have you lay in. I've also had the foot pain in the past, but haven't had it for a long time. Never thought about it possibly being related to radiation. Are you by any chance having any shortness of breath?

pjba11

shortness of breath
Deanna; I like your pictures. It is fun to see the different personalities. I am trying to think of how to answer your question on shortness of breath during radiation. I had a type of 'weakness' when I had internal radiation. Similiar to getting the flu.. maybe. I had a all over weakness, a type of shortness of breath. It would come and go especially when I would stand up suddenly. I was told later that it could have had more to do with my getting 'peanut butter' poisoning. ( I ate a whole jar + of the recalled Jiff while in radiation causing salmanella poisoning.) My radiologist thought I was reacting to the radiation until the news announced the peanut butter recall. I had been so sick that all I was eating was the peanut butter and that was making me worse! Is this shortness of breath something that could be stress realated? When my daughter has any emotional trama she has a lot of trouble breathing. I know what you mean about the new symptom thing. I still have any new unexplained 'twinge' start a mini anxiety attack. Especially when I feel something going on with my lungs where the Drs are doing a 'watchful waiting' on both sides because of 'spots'. I also just had my right arm Xrayed because of shooting pains. My cuff may be tearing. It had a minor tear before on one of my MRI results, but may have repaired itself. I also have osteo going on. Shoveling snow may have aggravated either problem. 2 months ago they had to X ray my foot. Arthritus again. My back was x rayed before that due to radiation changes in my lower spine..... Any of these things should just be expected as I get older, but because of our cancer diagnosis any of these things trigger a lot more awareness than most 'normal' people feel. My doctor is so patient and says it is all to be expected from the aggressive treatments I have been through. She encourages any new pains to be totally investiaged so that the stress levels stay down. We know that we can not rely on my CA125. I appreciate her judgement totally. Hope you get your answers too. Nothing should be overlooked at this stage.

deanna14

pjba11 said:

shortness of breath
Deanna; I like your pictures. It is fun to see the different personalities. I am trying to think of how to answer your question on shortness of breath during radiation. I had a type of 'weakness' when I had internal radiation. Similiar to getting the flu.. maybe. I had a all over weakness, a type of shortness of breath. It would come and go especially when I would stand up suddenly. I was told later that it could have had more to do with my getting 'peanut butter' poisoning. ( I ate a whole jar + of the recalled Jiff while in radiation causing salmanella poisoning.) My radiologist thought I was reacting to the radiation until the news announced the peanut butter recall. I had been so sick that all I was eating was the peanut butter and that was making me worse! Is this shortness of breath something that could be stress realated? When my daughter has any emotional trama she has a lot of trouble breathing. I know what you mean about the new symptom thing. I still have any new unexplained 'twinge' start a mini anxiety attack. Especially when I feel something going on with my lungs where the Drs are doing a 'watchful waiting' on both sides because of 'spots'. I also just had my right arm Xrayed because of shooting pains. My cuff may be tearing. It had a minor tear before on one of my MRI results, but may have repaired itself. I also have osteo going on. Shoveling snow may have aggravated either problem. 2 months ago they had to X ray my foot. Arthritus again. My back was x rayed before that due to radiation changes in my lower spine..... Any of these things should just be expected as I get older, but because of our cancer diagnosis any of these things trigger a lot more awareness than most 'normal' people feel. My doctor is so patient and says it is all to be expected from the aggressive treatments I have been through. She encourages any new pains to be totally investiaged so that the stress levels stay down. We know that we can not rely on my CA125. I appreciate her judgement totally. Hope you get your answers too. Nothing should be overlooked at this stage.

Thanks Peggy.
I will ask them, but I get so afraid that they will find that the cancer has spread. I don't know if that is rational or not, and I know that if it has we need to know. I guess it could be emotional, but it has only been happening since about the third week of radiation. Which still does not exclude some sort of "panic attack." I feel like I am so paranoid... every little ache, etc. scares me. I feel like a nut! Thanks for listening and understanding.

deanna14

pjba11 said:

shortness of breath
Deanna; I like your pictures. It is fun to see the different personalities. I am trying to think of how to answer your question on shortness of breath during radiation. I had a type of 'weakness' when I had internal radiation. Similiar to getting the flu.. maybe. I had a all over weakness, a type of shortness of breath. It would come and go especially when I would stand up suddenly. I was told later that it could have had more to do with my getting 'peanut butter' poisoning. ( I ate a whole jar + of the recalled Jiff while in radiation causing salmanella poisoning.) My radiologist thought I was reacting to the radiation until the news announced the peanut butter recall. I had been so sick that all I was eating was the peanut butter and that was making me worse! Is this shortness of breath something that could be stress realated? When my daughter has any emotional trama she has a lot of trouble breathing. I know what you mean about the new symptom thing. I still have any new unexplained 'twinge' start a mini anxiety attack. Especially when I feel something going on with my lungs where the Drs are doing a 'watchful waiting' on both sides because of 'spots'. I also just had my right arm Xrayed because of shooting pains. My cuff may be tearing. It had a minor tear before on one of my MRI results, but may have repaired itself. I also have osteo going on. Shoveling snow may have aggravated either problem. 2 months ago they had to X ray my foot. Arthritus again. My back was x rayed before that due to radiation changes in my lower spine..... Any of these things should just be expected as I get older, but because of our cancer diagnosis any of these things trigger a lot more awareness than most 'normal' people feel. My doctor is so patient and says it is all to be expected from the aggressive treatments I have been through. She encourages any new pains to be totally investiaged so that the stress levels stay down. We know that we can not rely on my CA125. I appreciate her judgement totally. Hope you get your answers too. Nothing should be overlooked at this stage.

Thanks Peggy.
Oops, double post. Sorry!

pjba11

we are as normal as normal can be and still have this!!
You are not supposed to let yourself feel like a 'nut' when you have genuine concerns about your health. Your emotional health is just as important as the rest of you when you have this battle to fight. The unknown has more power than the known. Keep your power where you use it against this battle. My neighbor was just here. Her sister in law who is in her 50's was diagnosed this fall with a lung disorder. The lung did not have cancer, but they did find cancer in her thyroid. They said no problem.. very curable. They then removed a non cancerous tumor from her lung, when she went back to have her lung follow up exam she asked her oncologist 'now that her lung was fine.......... what about the cancer in the thyroid?' Can you beleive her DR. said, "oh, that's right I forgot about that." Now it has spread from her thyroid to her bones and brain. This is the horror story that happens when we do not 'ride' these Drs. It should not be necessary. We are already fighting for our lives, but we need to make the medical profession stay on track. It is too easy to just say 'they will let us know ' ..........even if you are very afraid Deanna you have to have the earliest detection there is to beat this. Stay ahead of it. You know your body / how the changes feel. Challenge and follow up on any changes. Your Doctors are paid very well to take care of you. MAKE THEM DO IT RIGHT!!! They can not do that if you do not tell them what is going on or ask them to tell you what is going on. No question is too small when the worry starts!! Let them take care of you and if they don't ..... make them!!!! Stay tough it will keep you winning this battle. Do it for all of us too!!!!

lindaprocopio

If anyone hears from Marge off-board, please email me!
I will email Marge and see how she made out with her blood work today, and if I hear back, I'll email each of you. Deanna, chemo causes a pain very similar to arthritis about the 4th & 5th day after each round, and then it goes away until the same time the next round,...at least for me, so far, after 2 rounds. If radiation also causes that type of pain, I can see why our oncologists aren't trying to do chemo & radiation concurrently. (although I would LOVE to speed up this endless 8 months of treatment, and be done with all the doctoring!!) Maybe they will reconsider doing both simultaneously with Marge if she is suffering too much. Your shortness of breath seems like the same kind of 'scary' as my light-headedness. A few days ago I started getting this tiny tingling that you feel just before you pass out (almost like hyperventilating, but not as dramatic.) I haven't actually blacked out at all or even swooned, but it feels as if I could if I don't sit down. It makes me afraid to drive. But now when I feel that strange weakness, I drink a Boost and that seems to make it stop. I am in my predicted mid-round 'low blood count' week, and I have that cough. But I DO call my oncology nurse with every symptom to get it on my record, and she always has the oncologist call me back to let me know at what point I need to get my butt in there. I haven't had to go in between rounds yet, but it hasn't stopped me from phoning every few days if I am worried about any new symptom. Please don't hestitate to call your oncology nurse. They need to know what's going on. I'll let you know if I succeed in reaching Marge. I may even have her phone number somewhere. What time zone is she in?

shortmarge

lindaprocopio said:

If anyone hears from Marge off-board, please email me!
I will email Marge and see how she made out with her blood work today, and if I hear back, I'll email each of you. Deanna, chemo causes a pain very similar to arthritis about the 4th & 5th day after each round, and then it goes away until the same time the next round,...at least for me, so far, after 2 rounds. If radiation also causes that type of pain, I can see why our oncologists aren't trying to do chemo & radiation concurrently. (although I would LOVE to speed up this endless 8 months of treatment, and be done with all the doctoring!!) Maybe they will reconsider doing both simultaneously with Marge if she is suffering too much. Your shortness of breath seems like the same kind of 'scary' as my light-headedness. A few days ago I started getting this tiny tingling that you feel just before you pass out (almost like hyperventilating, but not as dramatic.) I haven't actually blacked out at all or even swooned, but it feels as if I could if I don't sit down. It makes me afraid to drive. But now when I feel that strange weakness, I drink a Boost and that seems to make it stop. I am in my predicted mid-round 'low blood count' week, and I have that cough. But I DO call my oncology nurse with every symptom to get it on my record, and she always has the oncologist call me back to let me know at what point I need to get my butt in there. I haven't had to go in between rounds yet, but it hasn't stopped me from phoning every few days if I am worried about any new symptom. Please don't hestitate to call your oncology nurse. They need to know what's going on. I'll let you know if I succeed in reaching Marge. I may even have her phone number somewhere. What time zone is she in?

Sorry haven't been around...

I wasn't sure whether the radiation or the chemo was kicking my butt this time. But now I know its both. I woke up this morning feeling really good and went for my last radiation treatment today and I went back to work. Stayed for a couple hours went home and took a long nap. I ache, my arms ache, my legs ache and I am getting frustrated. Trying to wrapped my grandchildrens presents and I just don't have the energy. I gave blood today too but haven't heard anything. But at least the radiation treatment is done!

Hugs to all I'm going back on the couch, hopefully I can stay awake and watch the football game. GO EAGLES!

MIND, BODY AND SOUL WE WILL KICK CANCERS BUTT!!!!!!!!!!!

lindaprocopio

((((Marge))))))
I was worried about you, kiddo. Glad the 'double-whammy' is over for you! You are a strong woman to be able to do those two treatments simultaneously. But your suffering will keep me from pressing my oncologist to start my radiation during my chemo, unless my CA-125 goes back up again. Please let us know when you get your bloodwork back. Tomorrow will be a better day. ((((Marge))))

PS: My husband is a lifelong die-hard Eagles fan, too.

pjba11

Marge Job well done!!
So glad you have that milestone behind you. Hope your energy levels rise so you can enjoy the presents you did wrap when they unwrap them!! Keep up your spirit you have already come a such a very long way. God bless you.

deanna14

pjba11 said:

Marge Job well done!!
So glad you have that milestone behind you. Hope your energy levels rise so you can enjoy the presents you did wrap when they unwrap them!! Keep up your spirit you have already come a such a very long way. God bless you.

Marge!!
I was getting worried about you, girl! I hope that each day gets better for you now that the internal radiation is over. I don't know how you have done both at once. The radiation onc. told me that the side effects of internal radiation were less than external radiation. I'm not sure I agree with that, or maybe it is the cumulative effect of the radiation. I have been feeling like I was run over for the last couple of days and I haven't had a treatment since Thursday.
Congrats on finishing that stage of treatment! That's a milestone in my opinion. I have internal tx. #2 on Wednesday and the final one next Tuesday and I will be completely finished with radiation. Yippee! I pray that your liver tests are back to normal!
Peggy and Linda, I hear you... I will call the doctor's office tomorrow, first thing. I'm not sure which one to call for sure, radiation onc. or gyn. onc? I guess I will start with the rad./onc. since he is the one actually giving me treatments right now.
We are supposed to get a couple inches of snow tonight... I'm so excited, I hope it snows a lot! Most winters I don't want it to snow, since I have to get up and drive to work. Since I get to stay home and look out the window at it, I'm excited.
It's beginning to look a lot like Christmas....
Love you girls. Hang tough.
Ditto Marge... Mind, Body and Soul, cancer's butt is ours!

lindaprocopio

Journaling & recording this whole experinence
All my life I have kept diaries and journals during stressful times in my life. Does anyone keep a journal to capture how you are feeling throughout this whole experinence? That was recommended from so many people before I had my surgery, that I did start recording everything I was thinking and feeling in a journal,...initially. And, because I have always taken 20 to 50 photos a week ever since my granchildren were born, I took photos of my big scar and bald head as another way to chronicle this whole journey. Just for me, a therapeutic exercise.

So, I was wondering if any of you are journaling also. And I need to confess something and get your reaction. I found that once I started posting here almost daily, I have no motivation to record anything in my journal, as my journey is recorded here. My confession is that, a couple weeks ago, I cut-and-pasted this whole thread into a Word document that I keep in the 'Personal' file of my home computer. I thought initially I'd use it as a reference so that I could 'catch up' in my journal. About once a week I cut-and-paste the new posts and add them to the bottom of this very lengthy saved document.

Do any of you feel your privacy is violated in any way by that? If so, I can delete it. (I guess I figured we've already opened up our stories to the internet, but if it makes any of you feel wierd to have your posts stored also in my computer, please tell me.) It just takes the place of my Journal, recording for me this critical time in my life in a much more vibrant way than my own scribblings ever could by themselves. I'd be happy to email you the document for your own files. It's fun because the older profile photos are on it, and then they change as I paste in the new stuff. Maybe when we are all out of treatment and NED, we can negotiate with the webmaster here and publish our stories in a book and all get rich (share and share alike!) and help others with cancer to keep the faith!

pjba11

you are so funny!!
If you think this part of my life is interesting.......? You are welcome to share all of my sad tales. I do not feel threatened in the least. Hope you are feeling good.

deanna14

pjba11 said:

you are so funny!!
If you think this part of my life is interesting.......? You are welcome to share all of my sad tales. I do not feel threatened in the least. Hope you are feeling good.

I'm in...
It does not bother me at all. If you get rich remember your new friends! I'd have to pay medical bills with it anyway... haha. I'm glad you are posting more Linda, it must mean that you are feeling good. I sure am hoping that Marge gets to feeling better soon.

deanna14

deanna14 said:

I'm in...
It does not bother me at all. If you get rich remember your new friends! I'd have to pay medical bills with it anyway... haha. I'm glad you are posting more Linda, it must mean that you are feeling good. I sure am hoping that Marge gets to feeling better soon.

Neuropathy
I just found this post on the "long term side effects of treatment board." I thought it was pretty educational, just thought I would share. Many of the posts talk about equal amounts of B vitamins to combat neuropathy.


Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

shortmarge

deanna14 said:

Neuropathy
I just found this post on the "long term side effects of treatment board." I thought it was pretty educational, just thought I would share. Many of the posts talk about equal amounts of B vitamins to combat neuropathy.


Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

Feeling Better
Linda, doesn't bother me a bit to record your journey. My daughter and I are doing it through pictures.

Deanna, the Oncol nurses ask alot of questions before your chemo treatment and one is if you having tingling in your hands or feet. They also ask if you have ringing in your ears and if you have a hard time buttoning buttons. The bottom of my feet feel a little prickly this time.

I'm feeling much better today, don't feel so beat up.

Hope all is well with you. Hugs!

FLY EAGLES FLY!!!!

lindaprocopio

Pretty scary reading, but the message is clear.
Deanna: That's a pretty scary description of neuropathy as a side effect to chemo, but I think the overriding message in the information is that EARLY disclosure of any neuropathy symptoms is tremendously important. When you are in chemo, they assign an oncology nurse to you to call whenever you have the tiniest worry or symptom. They give you an 'Oncologist On Call" number for nights and weekends, so that you have someone you can reach 24/7. And you'll have lots of opportunity to share EVERYthing before each round of chemo.

The way my chemo days go; first I'm called in to have my blood drawn by the phlebotimist and then sent back to the community Waiting Room. Next they call me in for vitals, and the oncology nurse quizzes me on any new or progressing side effects while she weighs me and takes my blood pressure. I volunteer every little worry or twinge I had in the past 3 weeks. She types everything I say into the computer. I go back to the waiting room until they call me to talk with my chemo oncologist. He goes over my labs and vitals with me and answers all the questions I have collected since I saw him last, and he makes the decision about the day's chemo based on all the new stuff in the computer in my file. They will adjust your chemo cocktail if they need to react to any side effects. After another short stint in the waiting room, you're called in for your chemo. My chemo drip takes 3 1/2 hours, so all told, I am there for 6 hours. I'm sure that you will make some great friends during chemo, as everyone has hours to kill and you are all together, and everyone shares their stories and worries. Many of the people will be on the same schedule as you are and you'll see them in the waiting room and can 'save a seat' for a chemo buddy to get their drip beside you. It's not really that bad. Nothing I'd want to go through over and over, but nothing I would be afraid to go through more than once if I needed to.