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Chemo Questions...Newbie
Hi everyone. My Mom, age 64, was diagnosed with stage 4 ovarain cancer. She had a complete hysterectomy on October 2. There were tumors on both ovaries. One was roughly lemon sized, the other was a little smaller. The larger tumor had begun to grow into the uterus. Before the sugery and diagnosis, she had constant GI symptoms; bloating, gas, cramps, for three years. She went to the Dr's about 6 months after these symptoms began, had a pelvic exam and cat scan. Nothing showed up then. A diagnosis of Irritable Bowel Syndrome. Over time, she lost weight, and her fingers began 'clubbing'. The GI symptoms got so bad, that I finally convinced her to go back and see a different doctor. An untrasound and cat scan showed the tumors. She had surgery 4 days later. There were cancer cells in her abdominal lymph nodes, but none on any other abdominal organs. A chest x-ray showed blood clots, and possible small 'nodules' in her lungs. The doctor thinks the cancer has spread there. No biopsy done to determine that for sure though. She was a heavy smoker for most of her life, so that is something to consider.
Today, she began chemo therapy. She's getting Taxol and Paraplatin. The doctor said that she will feel tired and weak for a while. We asked about her getting nausea/vomiting as well, and the doctor said; 'No, she will be fine'. He said this more than once. I've read about these drugs, and that is listed as a probable side-effects, among numerous others. I don't think that he's being straight up honest, as this was one of my Mom's worst fears, is not being able to eat, and feeling deathly ill. It is mine as well. She had gained 12 pounds since the surgery, and I'd hate to think that she's going to lose it all again, and then some. She isn't big to begin with..never was.
So, I asking anyone with experience, and has been through, or going through this, what we can realisticly expect.
If she is going to have nausea/vomiting, how long after the chemo is administered does it usually start? So far, she's OK, but it's only been a few hours. Does it get worse with each treatment? She's supposed to get a total of 6 treatments, over a couse of six months (Once a month). I've read a few other topics, and I've seen the CA 125 blood test mentioned alot. If they did this test on my Mom, the docotor never told us the number, or even mentioned if he ever did the test. I will have to find this out.
Any information anyone can give us will be deeply appreciated. I am brand new to this, and I'm very worried and scared for my Mom. Thanks.
Today, she began chemo therapy. She's getting Taxol and Paraplatin. The doctor said that she will feel tired and weak for a while. We asked about her getting nausea/vomiting as well, and the doctor said; 'No, she will be fine'. He said this more than once. I've read about these drugs, and that is listed as a probable side-effects, among numerous others. I don't think that he's being straight up honest, as this was one of my Mom's worst fears, is not being able to eat, and feeling deathly ill. It is mine as well. She had gained 12 pounds since the surgery, and I'd hate to think that she's going to lose it all again, and then some. She isn't big to begin with..never was.
So, I asking anyone with experience, and has been through, or going through this, what we can realisticly expect.
If she is going to have nausea/vomiting, how long after the chemo is administered does it usually start? So far, she's OK, but it's only been a few hours. Does it get worse with each treatment? She's supposed to get a total of 6 treatments, over a couse of six months (Once a month). I've read a few other topics, and I've seen the CA 125 blood test mentioned alot. If they did this test on my Mom, the docotor never told us the number, or even mentioned if he ever did the test. I will have to find this out.
Any information anyone can give us will be deeply appreciated. I am brand new to this, and I'm very worried and scared for my Mom. Thanks.
Robin,
I am sorry that your mom is having to deal with all of this. The cancer is bad enough. Nobody should ever have to worry about how they are going to pay for the treatment they need. The breast and cervical cancer program here is how I got my help. I went to them before my cancer had been pinpointed. And they still contact me every year when it is time to update. I give the papers to my Dr and he takes care of it.
Yes a public aid card here in IL is called a medicaid card. The local Deptartment of Human Resources can help. Also you can try looking on the internet as there are places that do help with medical costs.
It is good to hear that you mom was able to fix dinner on Thanksgiving and to enjoy the day. Hopefully the side effects from the chemo will gradually ease up for her as she gets further into her treatments. But if the nausea gets too bad, have her call her Dr and he will prescribe something for her. Tell her to hang in there.
Chris
I am sorry that your mom is having to deal with all of this. The cancer is bad enough. Nobody should ever have to worry about how they are going to pay for the treatment they need. The breast and cervical cancer program here is how I got my help. I went to them before my cancer had been pinpointed. And they still contact me every year when it is time to update. I give the papers to my Dr and he takes care of it.
Yes a public aid card here in IL is called a medicaid card. The local Deptartment of Human Resources can help. Also you can try looking on the internet as there are places that do help with medical costs.
It is good to hear that you mom was able to fix dinner on Thanksgiving and to enjoy the day. Hopefully the side effects from the chemo will gradually ease up for her as she gets further into her treatments. But if the nausea gets too bad, have her call her Dr and he will prescribe something for her. Tell her to hang in there.
Chris
Bless your Mom!
I am appalled to think that the doctor did not prescribe any meds for nausea to take home! I would not have made it thru the side affects without Ativan!
I would advise that your mom ask the doctor for a prescription anyway so she can have the option to take it or not....no one should have to suffer anymore than necessary...
And with each treatment the fatigue & weakness get alittle rougher...the Ativan would help relax your mom.....tell your mom its ok to lay in bed and rest...If I ignored what my body was telling me after chemo, I would feel worse!
So if I didn't "feel right" when I woke up in the morning, i.e.,,fatigue, nausea, shaking, weakness, I would just take an Ativan, (sometimes 2!) and sleep most of the morning til the early afternoon til I felt better.
NO Driving either! I would just cuddle in bed and watch a funny movie or sit at the computer.
sometimes the chemo meds would "wire me up"...like I couldn't sleep...sometimes I'd be a chatter box and my mind would race! And then also about 3-4 days after chemo, I would get the blues....I mentioned it to my doctor and she put me on an anti-depressant...I have since weaned myself off of it... I'm glad I took it because at one point when I was depressed, I wanted to stop my chemo!
I finished chemo in July and doing pretty good so far...
My prayers are with you and your Mom & Family....your mom should be very proud to have you as a daughter!
Much love
Ana
I am appalled to think that the doctor did not prescribe any meds for nausea to take home! I would not have made it thru the side affects without Ativan!
I would advise that your mom ask the doctor for a prescription anyway so she can have the option to take it or not....no one should have to suffer anymore than necessary...
And with each treatment the fatigue & weakness get alittle rougher...the Ativan would help relax your mom.....tell your mom its ok to lay in bed and rest...If I ignored what my body was telling me after chemo, I would feel worse!
So if I didn't "feel right" when I woke up in the morning, i.e.,,fatigue, nausea, shaking, weakness, I would just take an Ativan, (sometimes 2!) and sleep most of the morning til the early afternoon til I felt better.
NO Driving either! I would just cuddle in bed and watch a funny movie or sit at the computer.
sometimes the chemo meds would "wire me up"...like I couldn't sleep...sometimes I'd be a chatter box and my mind would race! And then also about 3-4 days after chemo, I would get the blues....I mentioned it to my doctor and she put me on an anti-depressant...I have since weaned myself off of it... I'm glad I took it because at one point when I was depressed, I wanted to stop my chemo!
I finished chemo in July and doing pretty good so far...
My prayers are with you and your Mom & Family....your mom should be very proud to have you as a daughter!
Much love
Ana
My Mom is still doing OK. That fatigue/weakness hit her yesterday. She spent most of her time resting in bed. If she got up and try to do some light housework, she would feel worse and get some nausea too. She's slightly better today, but it's getting on her nerves. I told her that this is typical for chemo, and to be patient. Her next round is on Dec 17. I just wanted to keep everyone posted, and maybe give some others just starting out with this some encouragement. We need all the support we can get.
Thanks for the info. It sounds like a helpful drug. As for the cost of treating the cancer, I know it's expensive. I've looked under every rock and stone I could for finicial help during my Mom's 6 week recovery from the surgery. Her oncologist refered her to Medicaid, and a program that only covered breast and cervical cancer. They are over income for some of the programs offerered here, other programs don't cover ovarian cancer. There is no 'public' aid here, unless it's the same thing as Medicaid. I have been working with a wonderful, wonderful woman from the American Cancer Society. She too has been digging for possible resources for us, and hasn't come up with anything that I didn't find and try myself. It's very, very frustrating. I just hope that this doesn't stop her from getting the treatments. The oncologist should have told her about any additional needed drugs prior to starting the chemo! Duh! They can't prepare for what they don't know about. Not that they could dig up $36,000 for this drug even if they did now. They could sell their trailer, car, land, and everything else they own, and it still would not come to 36 grand. They barely qualified for the loan for just the 6 rounds of chemo. We are a rich family when it comes to love, but poor when it comes to material things like money. Sorry, I'm complaining and rambling...
On a positive note, my Mom still made her usual, delicious Thanksgiving feast today. We all ate too much, and laughed even more...Lol. At least she was able to do it. She's still feeling great, and had no problem cooking all day. She told me to 'get out from underfoot' when I wanted to help :) It was bitter-sweet for me, and I'm know I wasn't the only one wondering if this was our last Thanksgiving with her. Trying not to think about that possiblity. Thanks again, and I'll keep posting here. Hope everyone had a great Thanksgiving.
On a positive note, my Mom still made her usual, delicious Thanksgiving feast today. We all ate too much, and laughed even more...Lol. At least she was able to do it. She's still feeling great, and had no problem cooking all day. She told me to 'get out from underfoot' when I wanted to help :) It was bitter-sweet for me, and I'm know I wasn't the only one wondering if this was our last Thanksgiving with her. Trying not to think about that possiblity. Thanks again, and I'll keep posting here. Hope everyone had a great Thanksgiving.
Robin,
The shot that her Drs are referring to is probably Neulasta. If they say that she needs it then she probably does. Chemo affects the bodies abilities to manufacture white blood cells which fight off infection. If the count gets too low then she becomes more susceptable to colds and flu. Also if the count is too low, they will delay treatment until it has risen. So if there seems to be a problem, Neulasta is given 24 hours after chemo treatment. I started recieving mine after my second treatment and and had one after each one until I was finished.
If your parents do not have insurance to help and do not qualify for medicaid, you might suggest to them to apply for public aid. Fighting cancer is not cheap and you never know when something else may come up. There is always blood work, scans, Drs visits, etc. She may be able to talk to her Dr about where she can turn to for additional help.
Chemo has come a long way in the last several years. Now pre meds are given to help fight the nausea and vomiting. As someone else said, all chemo has its side effects but how we each react to it is hard to tell. Also it is harder when you first start it. Gradually your body begins to adjust to it and the side effects tend to ease some. Most people do pretty good on it. But if she should develope bad side effects, let her Dr know and they may be able to come up with something different to help her. I also have 3 grandchildren and there have been times that they have come with me to recieve my treatments.
I wish your mom the very best and hope that the chemo is not too hard on her.
Chris
The shot that her Drs are referring to is probably Neulasta. If they say that she needs it then she probably does. Chemo affects the bodies abilities to manufacture white blood cells which fight off infection. If the count gets too low then she becomes more susceptable to colds and flu. Also if the count is too low, they will delay treatment until it has risen. So if there seems to be a problem, Neulasta is given 24 hours after chemo treatment. I started recieving mine after my second treatment and and had one after each one until I was finished.
If your parents do not have insurance to help and do not qualify for medicaid, you might suggest to them to apply for public aid. Fighting cancer is not cheap and you never know when something else may come up. There is always blood work, scans, Drs visits, etc. She may be able to talk to her Dr about where she can turn to for additional help.
Chemo has come a long way in the last several years. Now pre meds are given to help fight the nausea and vomiting. As someone else said, all chemo has its side effects but how we each react to it is hard to tell. Also it is harder when you first start it. Gradually your body begins to adjust to it and the side effects tend to ease some. Most people do pretty good on it. But if she should develope bad side effects, let her Dr know and they may be able to come up with something different to help her. I also have 3 grandchildren and there have been times that they have come with me to recieve my treatments.
I wish your mom the very best and hope that the chemo is not too hard on her.
Chris
Thanks again. I just spoke to my Mom, she's still feeling OK. I know that it takes a few days for any side effects to begin. I have another question. While she was getting the chemo yesterday, the nurse told her that she would have to have a shot as well, to protect her white blood cells. BTW, it would cost $6,000! She said that she was going to make a phone call, to see if my Mom could get it for free. Then, they never mentioned it again while my Mom was there...grrrr! My parents only have hostpitilzation insurance, and were turned down by Medicaid. My Mom isn't old enough for Medicare yet, so they had to borrow the money for the chemo treatments. My Dad has always been self-employed. $1,500 up front for each treatment. Then they spring this onto her, while she's getting her first treatment. They borrowed just enough to cover the $1,500 each time, so obviously they don't have an extra 6 grand sitting around. My Mom is very upset, the last thing she needs. I can't wait to call them tomorrow!
Does anyone know what this shot is, or when, during treatment, is a patient is supposed to receive it? I would think at the beginning, if it's supposed to protect your white blood cells. I'm calling tomorrow, but I was wondering if I could get some info here before then. I hope that everyone has a happy Thanksgiving :)
Does anyone know what this shot is, or when, during treatment, is a patient is supposed to receive it? I would think at the beginning, if it's supposed to protect your white blood cells. I'm calling tomorrow, but I was wondering if I could get some info here before then. I hope that everyone has a happy Thanksgiving :)
Welcome to the group,I'm sorry about your Mom. This disease and treatments affect us all differently,but why your Onc would rx a med for breakthrough nausea I don't understand!! I go through 3 different rx's a month for nausea,and they also give me some at treatments.. but I'm on a different chemo that your Mom. I would definetly ask about the ca-125, but also keep in mind since your Mom has just had the surgery and the ca-125 reacts to any inflammation it may be elevated,so that might be his reason for not having one done at this time. The ladies on this site will help you and your Mom as much as possible,so please feel free to ask anything of us. ~~~~Joanne
Thanks so much. Today was her very first round of chemo, and they didn't do any preliminary blood work before they gave it. I told her to expect that, and she questioned them when it wasn't done. The nurse said that she will have blood work done each time after today, to check liver, kidney functions, blood counts, prior to further treatments. This irks me. I'm definitely calling them Friday. Not a single person in the hopsital after surgery, or now during chemo has mentioned the CA 125 test to her. I find this hard to swallow, since it's obviously an important test. I will find out, however.
I had that same thought, teddyboy, about primary lung cancer. I haven't said this to my Mom, but it crossed my mind. Especially since she smoked most of her life. However, the oncologist said that the chemo will get the nodules (There's two small ones they say). They are in an inoperable location too, he added. The OR nurse also said that since the scans are so sensitive, that they show scar tissue, or small pockets on inflamation, that can look like nodules, but turn out to be benign. So, who knows, the only was to know for sure is a biopsy.
I know that she will have side-effects. I just hope that they are manageable, and that she won't feel like death. I really hope that the doctor and nurses know what they are talking about when it comes to the side-effects. I just don't want to see her suffer. We are a very close family, and my three kids adore her and their grandfather. It's so nice knowing that we aren't alone, and I'm so glad that I found this forum :)
I had that same thought, teddyboy, about primary lung cancer. I haven't said this to my Mom, but it crossed my mind. Especially since she smoked most of her life. However, the oncologist said that the chemo will get the nodules (There's two small ones they say). They are in an inoperable location too, he added. The OR nurse also said that since the scans are so sensitive, that they show scar tissue, or small pockets on inflamation, that can look like nodules, but turn out to be benign. So, who knows, the only was to know for sure is a biopsy.
I know that she will have side-effects. I just hope that they are manageable, and that she won't feel like death. I really hope that the doctor and nurses know what they are talking about when it comes to the side-effects. I just don't want to see her suffer. We are a very close family, and my three kids adore her and their grandfather. It's so nice knowing that we aren't alone, and I'm so glad that I found this forum :)
With regards to the lung nodules my mom discovered the same thing in a ct scan. Her doctor at said it is not common for ovarian cancer to spread to the lungs and that it would be a good idea to have the nodule biopsied. He was right because it turned out to be a primary lung cancer. I do not tell you this to make you worry, but rather to let you know so you can ask questions or get a second opinion. I will be thinking of you.
Hello Robin,
I am so sorry you and your mother are going through this. It's not an easy thing to have to deal with, for the patient or the caregiver. But, it is do-able!
In regards to the CA 125 count, your Mothers oncologist will have these results. It's not a question of "if" they were done, they most definitely would have been. They would have done blood tests prior to surgery and then again after surgery.
Then prior to starting chemo they would have been done again, that number would be used as a starting point for the chemo. Prior to each round of chemo, a new blood test will be taken so they can check not only her CA 125 count but also to obtain other vital information.
The CA 125 count is generally used as an indicator of how well the chemo is working. I say generally because for a lot of us, myself included, the CA 125 is a very good indicator on how the chemo is working. However, for some times the count isn't always a good indicator. But a pattern will emerge and it will soon become obvious if it is for your Mother.
I agree with Maggie, you and your Mother have every right to ask as many questions and obtain as much information/ knowledge from the oncologist. I know some oncologist's can be dismissive and think that it's a "need to know" only basis's. And for some women that works, but if you chose to be informed and want to know exactly what is going on and why certain things are being done or not done, you have every right to question the oncologist and get answers. I believe if we need to be our own advocates and be as informed as possible so we can make informed choices about our treatments.
There are always side affects with chemo and again as Maggie said, some your Mother will get, some she wont. I sincerely hope she has as few as possible.
You might want to look into the Cancer Council Association and see if there is a branch near you. Or rather where your Mother will be going for treatment. Some of them offer great support to cancer patients and their caregivers. IE: The Look Good, Feel Good programme is one, there are places that offer wigs and hats etc to cancer patients and it can be a good way to connect with other ladies in similar situations.
I wish you and your Mother all the very best and I hope she does well on her chemo, just remember to take good care of yourself during all of this.
Kindest regards.....Janet
I am so sorry you and your mother are going through this. It's not an easy thing to have to deal with, for the patient or the caregiver. But, it is do-able!
In regards to the CA 125 count, your Mothers oncologist will have these results. It's not a question of "if" they were done, they most definitely would have been. They would have done blood tests prior to surgery and then again after surgery.
Then prior to starting chemo they would have been done again, that number would be used as a starting point for the chemo. Prior to each round of chemo, a new blood test will be taken so they can check not only her CA 125 count but also to obtain other vital information.
The CA 125 count is generally used as an indicator of how well the chemo is working. I say generally because for a lot of us, myself included, the CA 125 is a very good indicator on how the chemo is working. However, for some times the count isn't always a good indicator. But a pattern will emerge and it will soon become obvious if it is for your Mother.
I agree with Maggie, you and your Mother have every right to ask as many questions and obtain as much information/ knowledge from the oncologist. I know some oncologist's can be dismissive and think that it's a "need to know" only basis's. And for some women that works, but if you chose to be informed and want to know exactly what is going on and why certain things are being done or not done, you have every right to question the oncologist and get answers. I believe if we need to be our own advocates and be as informed as possible so we can make informed choices about our treatments.
There are always side affects with chemo and again as Maggie said, some your Mother will get, some she wont. I sincerely hope she has as few as possible.
You might want to look into the Cancer Council Association and see if there is a branch near you. Or rather where your Mother will be going for treatment. Some of them offer great support to cancer patients and their caregivers. IE: The Look Good, Feel Good programme is one, there are places that offer wigs and hats etc to cancer patients and it can be a good way to connect with other ladies in similar situations.
I wish you and your Mother all the very best and I hope she does well on her chemo, just remember to take good care of yourself during all of this.
Kindest regards.....Janet
Thanks so much for your response. I just spoke to my Mom. They have to make an hour and 20 min trip one way to get the chemo treatments. We live in an remote, urban area, and have to travel to 'civilization' to get treatments. She's still feeling good, so far. Here's how her day went. There were several nurses monitoring her while she was getting the medication. They loaded her up with antihistamines and anti-nausea drugs while she was getting the chemo. My Mom asked for anti-nausea meds to bring home, and the nurse said that she gave her alot during treatment, and that she would be very surprised if she gets nausea at all. So, they didn't send her home with anything. There were several other women there with her, also receiving chemo, (the same kinds) and my Mom passed the time talking with them. That did her a world of good, to talk to someone who is walking the same road as she. A few of them have been receiving chemo off and on for years. Some were bald, some weren't. It's funny how some people lose their hair, and others don't. However, each of them have had a more or less positive experience with the chemo, and it's side effects. None of them have had major nausea/vomiting from it, so that encouraged my Mom (and myself). Their main complaint is the extreme fatigue/weakness that hits about 3 days afterwards. That, and going bald, we can deal with. I just hope and pray that my Mom does as well as these other ladies.
A definitely going to contact the Dr's office and get some more answers. Ex- the CA 125 tests, if it was done for my Mom, and what the number was, among other things.
My Mom already takes various supplements, and had quit smoking, so she says. I hope she isn't lying & sneaking them. She dosen't drink, or do drugs... none of us do. She cooks homemade healthy meals, always has. Smoking was her only vice. She has never been overweight, and also dosen't have high-blood pressure, high cholesterol, diabetes, etc, like a lot of older people do. So, that will hopefully help her in the long run.
There are no support groups here in 'NoPlaceVille', so I've been searching the internet for information. I am concerned now about myself, as I have a history of ovarian cysts, and probable endometriosis (Never had the laproscopic surgery to confirm this). I'm only 37, but I'm going to start being more vigillant anyway.
Thanks again, and any other info you can give me will be appreciated.
A definitely going to contact the Dr's office and get some more answers. Ex- the CA 125 tests, if it was done for my Mom, and what the number was, among other things.
My Mom already takes various supplements, and had quit smoking, so she says. I hope she isn't lying & sneaking them. She dosen't drink, or do drugs... none of us do. She cooks homemade healthy meals, always has. Smoking was her only vice. She has never been overweight, and also dosen't have high-blood pressure, high cholesterol, diabetes, etc, like a lot of older people do. So, that will hopefully help her in the long run.
There are no support groups here in 'NoPlaceVille', so I've been searching the internet for information. I am concerned now about myself, as I have a history of ovarian cysts, and probable endometriosis (Never had the laproscopic surgery to confirm this). I'm only 37, but I'm going to start being more vigillant anyway.
Thanks again, and any other info you can give me will be appreciated.
Shame on her doctor, and mine and many others. She will have side effects to the chemo. We all do. Some are affected more than others. My advice is to start doing some research about supplements and just make sure she eats as much as she can. Your doc should have prescribed some anti nausea meds, but if not then contact your nurse and make inquiries. She should not be smoking, using alcohol (imagine what her liver is filtering out right now!) or processed foods. Keep her sugar intake as low as possible, cancer loves glucose! I had relatively light side effects on the first course of carbo/taxol. I stayed ahead of the nausea by keeping food in my stomach all the time. And I took the meds before I started feeling bad, it is hard to catch up.
Start keeping records of the CA125, CTscans and any info you can get. If your doc is not forthcoming, you will need to ask questions, don't let them put you off. Try to think of it as "he/she is your employee". If you don't feel you are getting the info, start asking other patients about other docs, treatments, supplements, yoga, mind body work - meditation, visualization, therapy.
Find a local support group, if your mom won't or can't go, you should. You are going to need all the support you can get if you want to be a good caregiver. Take good care of yourself so that you stay strong. This is a great forum and you will find lots of support and answers here, you just need to be like a dog at a bone and work hard to research and get as many answers as possible. This is an ugly disease, but you can do things that will support her as she goes through treatment. Don't give up!
Start keeping records of the CA125, CTscans and any info you can get. If your doc is not forthcoming, you will need to ask questions, don't let them put you off. Try to think of it as "he/she is your employee". If you don't feel you are getting the info, start asking other patients about other docs, treatments, supplements, yoga, mind body work - meditation, visualization, therapy.
Find a local support group, if your mom won't or can't go, you should. You are going to need all the support you can get if you want to be a good caregiver. Take good care of yourself so that you stay strong. This is a great forum and you will find lots of support and answers here, you just need to be like a dog at a bone and work hard to research and get as many answers as possible. This is an ugly disease, but you can do things that will support her as she goes through treatment. Don't give up!
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