starting second round
Comments
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forgot something
I forgot they also said constipation was a main side effect but again if followed their regime they have then should be/hopefully minimal and managable. But it's all sort of scary when they never really know what will happen to a person, be it easier or harder or something new. But you just have to make a choice and go with it as need to feel doing right in your mind.0 -
Clinical trialmisspokey said:forgot something
I forgot they also said constipation was a main side effect but again if followed their regime they have then should be/hopefully minimal and managable. But it's all sort of scary when they never really know what will happen to a person, be it easier or harder or something new. But you just have to make a choice and go with it as need to feel doing right in your mind.
Hello Misspokey,
I'm so sorry to hear about your recurrence. Unfortunately, that is just the nature of this horrific disease. I was in a Doxil clinical trial a couple of years ago, and was very disappointed that I didn't get the "new drug" arm..........I hope you do!!!!! Doxil and it's side effects can be pretty difficult.
My doctor has me take Senokot when taking the chemotherapy. Plus, I try to eat lots of fresh fruit and vegetables which also are loaded with fiber. Also, if you find it hard to eat so much fiber, there are wonderful products in the health food stores. For example, I take a tablet that is a blend of tons of different vegetables.......like an insurance policy.
Please keep us posted to how you are doing, etc. Take good care, MM0 -
good newsMichaelaMarie said:Clinical trial
Hello Misspokey,
I'm so sorry to hear about your recurrence. Unfortunately, that is just the nature of this horrific disease. I was in a Doxil clinical trial a couple of years ago, and was very disappointed that I didn't get the "new drug" arm..........I hope you do!!!!! Doxil and it's side effects can be pretty difficult.
My doctor has me take Senokot when taking the chemotherapy. Plus, I try to eat lots of fresh fruit and vegetables which also are loaded with fiber. Also, if you find it hard to eat so much fiber, there are wonderful products in the health food stores. For example, I take a tablet that is a blend of tons of different vegetables.......like an insurance policy.
Please keep us posted to how you are doing, etc. Take good care, MM
I got good new, I got the 'arm' for the EC145 trial. They are quite excited about it as seeing good results here so far. I've voiced my concerns on the sides but they say they've seen here, if patient follows their regiment then are minimal. Such as using Udderly Smooth quite a bit to hands and feet, not wearing the high heel shoes for long periods of times, taking breaks off them, using the cool gel packs, etc. Also the research nurse gave me the regiment list to follow for the consitapation problem, which consists of several different things and working up if doesn't work. I have been generaly trying to eat quite a bit of fruits and veggies, which now is a bit better with all the fresh ones, but as you probably know, don't all days. Sometimes now not really feeling 'hungry'. Probably this stuff growing. I've toyed with idea of going to Mexico to Hoxsey or to Equador for alternative but then thought with this bulge and the uncomfortableness going this way again for now. Also feel a little more comfortable with drs and nurses right here close and there sounds like you go every 3-6 months or so. Not sure if can do the strictness of the diet, which some say you just do it, makes you better. I agree but sometimes easier said than done if they haven't done it. I've read some of the sides here that didn't sound so good and relayed my concerns to dr and research nurse and also my gyn/onc dr, and they all have said that here they haven't heard of too much bad, if prepared and work with it. They feel here this institute, Willamette Vally Cancer Institute (Eugene, OR), they are a bit more 'holistic' working with patients. I don't know, I just hope they are right as had felt pretty good before this number and then 3 days later found the bulge. Now don't know if it is stuf inside or some of mind thinking more but not real keen on going 6 months of not feeling good. They said now 'not quite like walk in the park' but much better feeling that with the Taxol/Cisto I had as the IP was the bad one. I did really pretty good on it, I felt off some but not what could have with the premeds, and was able to make it through all 6 cycles. Hopefully my age is helping, 48 (almost) and generally good health. But nothing if for sure. Thanks for your imput.0 -
Your good newsmisspokey said:good news
I got good new, I got the 'arm' for the EC145 trial. They are quite excited about it as seeing good results here so far. I've voiced my concerns on the sides but they say they've seen here, if patient follows their regiment then are minimal. Such as using Udderly Smooth quite a bit to hands and feet, not wearing the high heel shoes for long periods of times, taking breaks off them, using the cool gel packs, etc. Also the research nurse gave me the regiment list to follow for the consitapation problem, which consists of several different things and working up if doesn't work. I have been generaly trying to eat quite a bit of fruits and veggies, which now is a bit better with all the fresh ones, but as you probably know, don't all days. Sometimes now not really feeling 'hungry'. Probably this stuff growing. I've toyed with idea of going to Mexico to Hoxsey or to Equador for alternative but then thought with this bulge and the uncomfortableness going this way again for now. Also feel a little more comfortable with drs and nurses right here close and there sounds like you go every 3-6 months or so. Not sure if can do the strictness of the diet, which some say you just do it, makes you better. I agree but sometimes easier said than done if they haven't done it. I've read some of the sides here that didn't sound so good and relayed my concerns to dr and research nurse and also my gyn/onc dr, and they all have said that here they haven't heard of too much bad, if prepared and work with it. They feel here this institute, Willamette Vally Cancer Institute (Eugene, OR), they are a bit more 'holistic' working with patients. I don't know, I just hope they are right as had felt pretty good before this number and then 3 days later found the bulge. Now don't know if it is stuf inside or some of mind thinking more but not real keen on going 6 months of not feeling good. They said now 'not quite like walk in the park' but much better feeling that with the Taxol/Cisto I had as the IP was the bad one. I did really pretty good on it, I felt off some but not what could have with the premeds, and was able to make it through all 6 cycles. Hopefully my age is helping, 48 (almost) and generally good health. But nothing if for sure. Thanks for your imput.
Hello misspokey,
Such wonderful news....you getting the new drug!!! Congratulations! I didn't realize that they do the new drug along with Doxil, that's very interesting. When do you start?
Do you have to have an EKG before each treatment? How often are your treatments? Every few weeks?
When I was in a clinical trial with Doxil versus another new drug, I had to take the Doxil, and had to have an EKG before each treatment. I can't exactly remember how often the treatments were.
Please let us know how you are doing with the new drug. Who knows, it could end up being the regimen that the rest of us might be on some day.
Do you have family to help take care of you when you're not feeling so good? I sure hope that you tolerate all this well and it knocks the "monster" into remission!!!
Take good care,
MM0 -
Hope
Dear Miss Pokey, I am sorry to read of your recurrence but know you will hear from lots of women dealing with or have dealt with a recurrence, and they will give you much hope. I am a 6yr 9month survivor here and still going. Sending lots of hugs ♥ prayers your way.
Isaiah 40:31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.0 -
treatment started Sept. 9MichaelaMarie said:Your good news
Hello misspokey,
Such wonderful news....you getting the new drug!!! Congratulations! I didn't realize that they do the new drug along with Doxil, that's very interesting. When do you start?
Do you have to have an EKG before each treatment? How often are your treatments? Every few weeks?
When I was in a clinical trial with Doxil versus another new drug, I had to take the Doxil, and had to have an EKG before each treatment. I can't exactly remember how often the treatments were.
Please let us know how you are doing with the new drug. Who knows, it could end up being the regimen that the rest of us might be on some day.
Do you have family to help take care of you when you're not feeling so good? I sure hope that you tolerate all this well and it knocks the "monster" into remission!!!
Take good care,
MM
My treatments started the 9th. Have Doxil every 28 days, EC145 3 days every other week. CT is at 6 weeks and Echo at about 1/2 mark. Family helps greatly. Glad I don't have to work as am so slow getting stuff done around here I need to do. Motivation is sort of there but then start one thing, go to another. Spend too much time on computer, get confused about what read of what to do, not eat, take it all in and doesn't leave you much. So far treattmens not too bad. Constipation biggest problem but not bad with senna and stool softener. Feel full most of time and some pains but never quite sure if is from chemo or weather or from sitting in chair wrong or not excerising so much. Weather already playing some into it as harder for me to get going when dark earlier/later, gloomier days coming, cooler, etc. Didn't like the real hot but don't like to go out to feed squirrels and birds in rain or to do yard work. So many things to do, so little time and/or ambition. Then wonder if just getting lazy? Trying not to take advantage of condition but still hard to get up and move it. Start next treatments next week, dr on Mon with blood and urine test and EC145, then the EC on Wed and Fri. So quick compared to the other treatments, much better if just does the trick. Time will tell. Will be glad to get the new CA125 to see if going down any, which I know sometimes isn't always a factor but does sound good. They gave me one and it was higher but then again that was the one at the research place which can be different then at the center I go to. Will try to check in from time to time to keep posted on progress.0 -
EC145misspokey said:treatment started Sept. 9
My treatments started the 9th. Have Doxil every 28 days, EC145 3 days every other week. CT is at 6 weeks and Echo at about 1/2 mark. Family helps greatly. Glad I don't have to work as am so slow getting stuff done around here I need to do. Motivation is sort of there but then start one thing, go to another. Spend too much time on computer, get confused about what read of what to do, not eat, take it all in and doesn't leave you much. So far treattmens not too bad. Constipation biggest problem but not bad with senna and stool softener. Feel full most of time and some pains but never quite sure if is from chemo or weather or from sitting in chair wrong or not excerising so much. Weather already playing some into it as harder for me to get going when dark earlier/later, gloomier days coming, cooler, etc. Didn't like the real hot but don't like to go out to feed squirrels and birds in rain or to do yard work. So many things to do, so little time and/or ambition. Then wonder if just getting lazy? Trying not to take advantage of condition but still hard to get up and move it. Start next treatments next week, dr on Mon with blood and urine test and EC145, then the EC on Wed and Fri. So quick compared to the other treatments, much better if just does the trick. Time will tell. Will be glad to get the new CA125 to see if going down any, which I know sometimes isn't always a factor but does sound good. They gave me one and it was higher but then again that was the one at the research place which can be different then at the center I go to. Will try to check in from time to time to keep posted on progress.
Haven't heard of EC145. Is it a chemo?
Hope it it good for you.
Hugs, Kathleen:)0 -
EC145kayandok said:EC145
Haven't heard of EC145. Is it a chemo?
Hope it it good for you.
Hugs, Kathleen:)
I guess it is considered that. It's a new experimental drug so I'm on clinical study. I get lost when I ask how many are on it, if that's in US or area or what. Then I ask if going well, thought they said yes to start with, then when they related the half dozen or so, got lost again. Maybe it's half dozen area for this center, that they personally know. It's a small syring push so with the two premeds and saline takes about 45-60 min. if all goes well and they keep on it. Very quick compared to what had in past. I have the Doxil and it on Day 1, then 3 times a week, every other week,have just EC145. Then day 28 start over with Doxil. It also comes with it's share of sides but maybe not quite as many as Doxil. Main ones with it are the constipation and I belive the white blood count. There again I sometimes forget which one goes with which drug. All I know is they were pretty excited I got to try it as have hopes for it but with anything new, don't know all the sides and again, each woman is different how things work or react on them. Hopefully it will do the trick. Sounds like I'll find out at the 6 week mark with new CT. If stable or better then can stay on it (unless company pulls me off for some reason or another). I believe it's suppose to attack the folic acid that is around the cell, so that Doxil can kill the cell easier or better. So needless to say I have to stop taking my multi vitamin with the folic acid as well as some of the 'better' cereals I found with multi grain and less sugars as they have it added to them. Also, saw my stand by of Ensure has it too so that's out but eating ok right now, not like with Cisto/Taxol IP had before. We'll see and keep informed as I can.0 -
Doxilmisspokey said:EC145
I guess it is considered that. It's a new experimental drug so I'm on clinical study. I get lost when I ask how many are on it, if that's in US or area or what. Then I ask if going well, thought they said yes to start with, then when they related the half dozen or so, got lost again. Maybe it's half dozen area for this center, that they personally know. It's a small syring push so with the two premeds and saline takes about 45-60 min. if all goes well and they keep on it. Very quick compared to what had in past. I have the Doxil and it on Day 1, then 3 times a week, every other week,have just EC145. Then day 28 start over with Doxil. It also comes with it's share of sides but maybe not quite as many as Doxil. Main ones with it are the constipation and I belive the white blood count. There again I sometimes forget which one goes with which drug. All I know is they were pretty excited I got to try it as have hopes for it but with anything new, don't know all the sides and again, each woman is different how things work or react on them. Hopefully it will do the trick. Sounds like I'll find out at the 6 week mark with new CT. If stable or better then can stay on it (unless company pulls me off for some reason or another). I believe it's suppose to attack the folic acid that is around the cell, so that Doxil can kill the cell easier or better. So needless to say I have to stop taking my multi vitamin with the folic acid as well as some of the 'better' cereals I found with multi grain and less sugars as they have it added to them. Also, saw my stand by of Ensure has it too so that's out but eating ok right now, not like with Cisto/Taxol IP had before. We'll see and keep informed as I can.
Hey Misspokey, I am new to this site as well, but I just wante to let you know that I too have been on and is on again on Doxil. My first set of Doxil treatment had caused me to blister really bad. I had it on my back and on top of both of my foot. My Dr. had taken me off of it until most of the blisters had cleared up, then was put back on Doxil but on a lesser dose and farther apart such as 4 weeks. It had worked and had dropped my CA125 done to 7 pts. 10 months later it came back. I am again on Doxil but on the lesser dose and at 4 weeks apart. Some how or another the cancer is causing alot of pain around my belly area, so they put me on Oxycodone to help me deal with it. However, this medication along with Doxil causes constipation (not to mention it makes me sleepy alot) and the Dr. had given me Senna, but I had to play around with how much I took for it to work. Well, I kinda ran out of pills and didn't have the money to get it refilled, so a friend had given me this bottle called "MiraLax". It is a stool softner and helps with constipation at the same time. This had really worked for me, because thanks to the constipation, I now have hemhorids. This "MiraLax" really helped me and had lessen my hemhorid problem as well. I truly Praise God for that.
Do take care and let us know how you are doing.0 -
EC145 phaseMichaelaMarie said:Your good news
Hello misspokey,
Such wonderful news....you getting the new drug!!! Congratulations! I didn't realize that they do the new drug along with Doxil, that's very interesting. When do you start?
Do you have to have an EKG before each treatment? How often are your treatments? Every few weeks?
When I was in a clinical trial with Doxil versus another new drug, I had to take the Doxil, and had to have an EKG before each treatment. I can't exactly remember how often the treatments were.
Please let us know how you are doing with the new drug. Who knows, it could end up being the regimen that the rest of us might be on some day.
Do you have family to help take care of you when you're not feeling so good? I sure hope that you tolerate all this well and it knocks the "monster" into remission!!!
Take good care,
MM
Hi. Checked with Dr. yesterday and he said EC 145 is a phase 2 drug. I didn't recheck but thinking why I'm at phase IV now is either because it did come back and as quick as did or because was considered plumonary, spot on one lung. Hear all these things makes sense at time and don't jot all down then forget where heard or how said or applied. They said sounded like either a few weeks or a couple doses of the Doxil I should (hopefully) see the bulge start shrinking, but that with the EC it should be sooner. That is if it works on me. Have another EC tomorrow and then on Fri. then off a week. Starting the constipation troubles so doubling the Senna and stool softenter, plus the fruits and veggies, see if that helps. Seemed to last time when I did it, so this time going to each day of this week and a few after until back to normal. Maybe next time will start on the day of first treatment, not wait until day after. Am glad so far I am more able to do things around house to help out, chores and my projects although so many are coming on as I'm so behind in mine with all this time spending on computer checking things out and then playing some games-bad, takes time. Then the fall leaves are starting and need to do things to prepare for winter.0
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