Got Port today..... start chemo tomorrow
I noticed someone else on here just started chemo so a lot of my questions were answered thru them. I do have a few others though. 1. How soon after chemo starts do you notice it is working?...or do you notice? I have a cough due to nodules in lungs and wondered if my cough would die down some and if so...when. 2. Can you take pain pills while on chemo? ..... like hydrocodone (vicodin)sp? 3.How many treatments are considered a normal "round"? and does a CT scan usually follow? 4. What the heck are CEA's or whatever ya'll talk about that you count all the time that go up and down??
I am not scared at all of getting the chemo. I am soooooooooo looking forward to it so I can get something in this body to help me fight. I also made tomorrow my start date for a new way of eating. Then as always I will continue my research on a doctor or facility or trial that can accomodate my needs to fight this monster.
Peace!
Jennie
Comments
-
Answer your questions
Hi, Jennie
I never felt better after doing chemo, so that's a hard question to answer. It was actually hard for me to tell if it was working - we went by the blood counts, the CEA and CA-19 markers.
The CEA is the tumor marker that measures for liver cancer. 0-2 for nonsmokers 2-5 smokers
6-above is indicative of activity. Mine were as high as 19.2 at one point.
The CA-19 is another marker test that they use for the pancreas. Anything over 37 is considered indicative of activity.
You should be able to take pain pills while you're doing chemo. They're flooding your liver with all of that other chemical mess. Probably check with the doc to make certain there would be no interaction.
And anytime you take the infusion, you've done a "round."
Not sure what chemo you'll be doing but you are approaching it with a positive attitude, and that's good. It's rough though, I won't lie to you. I was sick 4 or 5 days after each treatment and missed a couple of days work during each cycle.
Your white cell count will go down, but that's the chemo talking. Keep an eye on your platelet level - if it gets too low, you'll have to wait to build up before they will treat you again. Over time, you may develop ITP, which means your immune system has been compromised. Your platelets will stay low from then on and not be back the way the rest of non-cancer people are. Normal range 150,000-450,000. Mine dropped as low as the high 40's...and bounce between 50-80,000.
There is a new drug called Nplate that is supposed to raise platelet counts to do chemo; that could be an option if you get to that.
Stay positive, be your own advocate, question the doctor, and get a 2nd opionion if something sounds wrong. I did all of those and am still here after 5-years of fighting my monster.
I wish you the best. I hope some of this info will help you. Wish I had found this forum way earlier.....I just stumbled into it a few days ago. It's really great.
-Craig0 -
On Your Mark...
Get Set, Go!
Jennie, I don't know if you really "notice" that it is working. It's not like it is a plant that you stop watering and you see it die. At least that wasn't my experience. Generally, the chemo gradually makes you feel a little shittier each time. You may have the tingling with the fingers, you may not. If you are on the Oxyaplatin you more than likely will.
I believe you can use pain pills but if the chemo makes you constipated which it can do (one can either get corked and not go or unplugged and watch out) the pain meds can make the constipation worse so it's a balancing act.
The CEA is a marker that is in your blood that is used at times as a reference point to your cancer and how your treatment is going. I don't think I ever had a CEA over 10 while some people have it in the hundreds and they are NED now and I'm not so don't put too much "cred" into the CEA. With me, mine is 1.8 now but if were to do to 3, I'd know stuff was growing. In someone else it might be totally meaningless. Isn't this great, you get all this info and there often isn't anything useful that comes from it. You will have to see what it all means to YOU and how your body reacts.
My protocol called for CT scans every 2 months. I don't know if that is written in stone with everyone or what. It is for me at this point. At some point when I get the all clear or stable sign they would stretch out the scans to every 3 months, then 6 then yearly etc.
The great thing is that you are pumped up and ready to kick some ****. That's the way to handle it. You can do it. We're here to support you but YOU'VE got to do the grunt work Jennie
hugs
-phil
PS: One other thing, in the over 180 rounds I have never had to miss one due to low blood counts. They always tell me that my blood work is perfect. That's me. I don't know why it is, but it is. Probably because I'm a **** or something
;-)0 -
Something else......PhillieG said:On Your Mark...
Get Set, Go!
Jennie, I don't know if you really "notice" that it is working. It's not like it is a plant that you stop watering and you see it die. At least that wasn't my experience. Generally, the chemo gradually makes you feel a little shittier each time. You may have the tingling with the fingers, you may not. If you are on the Oxyaplatin you more than likely will.
I believe you can use pain pills but if the chemo makes you constipated which it can do (one can either get corked and not go or unplugged and watch out) the pain meds can make the constipation worse so it's a balancing act.
The CEA is a marker that is in your blood that is used at times as a reference point to your cancer and how your treatment is going. I don't think I ever had a CEA over 10 while some people have it in the hundreds and they are NED now and I'm not so don't put too much "cred" into the CEA. With me, mine is 1.8 now but if were to do to 3, I'd know stuff was growing. In someone else it might be totally meaningless. Isn't this great, you get all this info and there often isn't anything useful that comes from it. You will have to see what it all means to YOU and how your body reacts.
My protocol called for CT scans every 2 months. I don't know if that is written in stone with everyone or what. It is for me at this point. At some point when I get the all clear or stable sign they would stretch out the scans to every 3 months, then 6 then yearly etc.
The great thing is that you are pumped up and ready to kick some ****. That's the way to handle it. You can do it. We're here to support you but YOU'VE got to do the grunt work Jennie
hugs
-phil
PS: One other thing, in the over 180 rounds I have never had to miss one due to low blood counts. They always tell me that my blood work is perfect. That's me. I don't know why it is, but it is. Probably because I'm a **** or something
;-)
I was just looking at this port thingy. There is a small piece of gauze at the top which I am assuming is the actual round port section.... then about 1.5 inches down there is a larger gauze pad and I can see where a little blood came from there..... my question? what the heck is the larger gauze pad????? I thought they just cut you once and slid it in?0 -
CA 19-9Sundanceh said:Answer your questions
Hi, Jennie
I never felt better after doing chemo, so that's a hard question to answer. It was actually hard for me to tell if it was working - we went by the blood counts, the CEA and CA-19 markers.
The CEA is the tumor marker that measures for liver cancer. 0-2 for nonsmokers 2-5 smokers
6-above is indicative of activity. Mine were as high as 19.2 at one point.
The CA-19 is another marker test that they use for the pancreas. Anything over 37 is considered indicative of activity.
You should be able to take pain pills while you're doing chemo. They're flooding your liver with all of that other chemical mess. Probably check with the doc to make certain there would be no interaction.
And anytime you take the infusion, you've done a "round."
Not sure what chemo you'll be doing but you are approaching it with a positive attitude, and that's good. It's rough though, I won't lie to you. I was sick 4 or 5 days after each treatment and missed a couple of days work during each cycle.
Your white cell count will go down, but that's the chemo talking. Keep an eye on your platelet level - if it gets too low, you'll have to wait to build up before they will treat you again. Over time, you may develop ITP, which means your immune system has been compromised. Your platelets will stay low from then on and not be back the way the rest of non-cancer people are. Normal range 150,000-450,000. Mine dropped as low as the high 40's...and bounce between 50-80,000.
There is a new drug called Nplate that is supposed to raise platelet counts to do chemo; that could be an option if you get to that.
Stay positive, be your own advocate, question the doctor, and get a 2nd opionion if something sounds wrong. I did all of those and am still here after 5-years of fighting my monster.
I wish you the best. I hope some of this info will help you. Wish I had found this forum way earlier.....I just stumbled into it a few days ago. It's really great.
-Craig
Hello.
I'm interested in your mention of the fact that your doctor routinely uses the CA 19-9 test. My husband's oncologist also orders that test. We are in a war with Anthem/Blue Cross about coverage for that test. Does your insurance cover you for the test for colon cancer?
Hope all of your test results are perfect!
Thanks.
Hatshepsut0 -
Not sure what the larger...idlehunters said:Something else......
I was just looking at this port thingy. There is a small piece of gauze at the top which I am assuming is the actual round port section.... then about 1.5 inches down there is a larger gauze pad and I can see where a little blood came from there..... my question? what the heck is the larger gauze pad????? I thought they just cut you once and slid it in?
gauze pad is. My husband just had the entire area covered with gauze. He didn't have any pain, ever from the insertion of the port. As far as the chemo, it seemed to affect him differently than most. He was so sick that first day, he could barely stand up & he was totally jaundiced. But almost immediately after the treatment, he started feeling better. He has not gotten sick at all, and that so surprised me that I finally asked if he was getting the full dosage. The staff at his cancer center were truly surprised at how much better he looked at his 2nd treatment, and his doctors could tell that the treatments were working because his live shrunk a great deal, the jaundice cleared up, and his energy level was much, much better. As far as the white blood count is concerned, he is given a shot of Neupogen after the 46 hr pump is removed, and that ensures that the white blood count stays in a healthy range.0 -
Best of luck to youidlehunters said:Something else......
I was just looking at this port thingy. There is a small piece of gauze at the top which I am assuming is the actual round port section.... then about 1.5 inches down there is a larger gauze pad and I can see where a little blood came from there..... my question? what the heck is the larger gauze pad????? I thought they just cut you once and slid it in?
Jennie:
Best of luck to you. I agree with others who have posted that you (and your immune system) will greatly benefit from a positive attitude. Perhaps that is not medically provable, but it has been my experience that it works.
There was a lady ("Kanort" on this board) who used to post here who had the idea that you should assemble a "healing bag," a collection of small items that you keep close while you are fighting this awful disease. The items in your healing bag remind you to fight and remind you of the number of people in your life who are pulling for you. I sincerely hope that Kanort is healing. I thought she had a great idea. On her "About Me" page she wrote:
"My Healing Bag!
A friend once called me a butterfly, fluttering through a cancer center chemo room, briefly and gently touching the lives of patients captive to tubes, chemicals, and machines. I like to believe that this "butterfly effect" is my effort to start a ripple of caring and support that will reach from one person to another, to another. I know that sometimes a single small act of kindness is the only positive event that a cancer patient, or survivor, or even a caretaker may experience for days. Words are powerful, and I am a word person. These words may be engraved on a stone, a charm, or a small pocket token, but I choose words that are appropriate, place them in a small bag, and give them to newly diagnosed cancer patients. So “Hope” becomes a tangible object you can touch; "Dream" comes in a form you may visualize. "Believe," my favorite word of all, is always included in my “Healing Bag” along with a small, red, glass heart. Someday, I hope cancer survivors find a way to create a few new words to express the feelings that only other survivors can understand. We already reach out to each other with our support groups, camps, meetings and conventions. I would like to see language that expresses the simultaneous feelings of hope and fear, belief and disillusion. I could engrave these new words on stone, hold them in my hand and know that there are other people on this planet who understand my heart. "
Kanort is correct. Words are very powerful. I hope you will assemble a collection of powerful healing words that will give you comfort as you fight and heal.
Hatshepsut0 -
Portidlehunters said:Something else......
I was just looking at this port thingy. There is a small piece of gauze at the top which I am assuming is the actual round port section.... then about 1.5 inches down there is a larger gauze pad and I can see where a little blood came from there..... my question? what the heck is the larger gauze pad????? I thought they just cut you once and slid it in?
My larger gauze was the port itself. The smaller one for me is where there was a tube, I assume that is the tube that is in the artery and leads to the port. I have the Power Port and a nurse in oncology just told me she loves that one. I wish you luck tomorrow.
I took pain pills (vicodine) on chemo. Actually just took one. I had to quit my Motrin 800 because it contains aspirin and that I'm not supposed to take.
Continue to look for that third, fourth or fifth opinion and keep the chemo going. You are approaching this with a very proactive stance and that is good.
Kim0 -
Jennie
Everyone is different. Some rounds I start feeling the effects around day 3 (I go 5 days in a row) Others, like this week, I was nauseous day 1. I am always the worst the 3 days after treatment ends. But that's me...not you. Also, I take Vicodin regularly. It does cause constipation, but I am allergic to almost all pain meds, so it works for me.
The gauze you see is probably covering the incision. It will come off. The port is under your skin.
Rounds vary. Some folks get one infusion a week or every two weeks. That's a Round. I get 5 in a row, then 3 weeks off. My 5 days are considered 1 Round.
CT scans are done when the doctor orders, sometimes every 3 or 6 months, sometimes more often if they are monitoring something. Ask your doctor what they have in mind for you.
You can do this! Many hugs, Vicki0 -
numb....VickiCO said:Jennie
Everyone is different. Some rounds I start feeling the effects around day 3 (I go 5 days in a row) Others, like this week, I was nauseous day 1. I am always the worst the 3 days after treatment ends. But that's me...not you. Also, I take Vicodin regularly. It does cause constipation, but I am allergic to almost all pain meds, so it works for me.
The gauze you see is probably covering the incision. It will come off. The port is under your skin.
Rounds vary. Some folks get one infusion a week or every two weeks. That's a Round. I get 5 in a row, then 3 weeks off. My 5 days are considered 1 Round.
CT scans are done when the doctor orders, sometimes every 3 or 6 months, sometimes more often if they are monitoring something. Ask your doctor what they have in mind for you.
You can do this! Many hugs, Vicki
High
How long will that cream make your port stay numb after you apply it? They are taking blood at 7:45am and chemo ain't till 9:30am...... will I still be numb for the chemo prick??? I like that word... lol ... I told ya... I am a big wuss
J0 -
Hi, Idleidlehunters said:numb....
High
How long will that cream make your port stay numb after you apply it? They are taking blood at 7:45am and chemo ain't till 9:30am...... will I still be numb for the chemo prick??? I like that word... lol ... I told ya... I am a big wuss
J
I used to have them use a "cold" freeze spray before they put the needle in.
Another trick is to have them count 1-2-3 and on #3, breathe in deeply while they insert the needle - it's not too bad and quicker. You get used to it.
And one other note, you have to get your port FLUSHED every 30 days to prevent clotting. My very first one clotted and had to be pulled out.
A couple of years later, I had my new one inserted into the same spot and I have them maintenance it each month. They draw a little blood to get a good return, and then they flush it with heparin. Please make sure you do this.0 -
Hi, HatshepsutHatshepsut said:CA 19-9
Hello.
I'm interested in your mention of the fact that your doctor routinely uses the CA 19-9 test. My husband's oncologist also orders that test. We are in a war with Anthem/Blue Cross about coverage for that test. Does your insurance cover you for the test for colon cancer?
Hope all of your test results are perfect!
Thanks.
Hatshepsut
Yes Blue Cross/Blue Shield covers 75% of the test and I pay for the other 25% out of my own pocket.
SundanceH0 -
I've putSundanceh said:Hi, Idle
I used to have them use a "cold" freeze spray before they put the needle in.
Another trick is to have them count 1-2-3 and on #3, breathe in deeply while they insert the needle - it's not too bad and quicker. You get used to it.
And one other note, you have to get your port FLUSHED every 30 days to prevent clotting. My very first one clotted and had to be pulled out.
A couple of years later, I had my new one inserted into the same spot and I have them maintenance it each month. They draw a little blood to get a good return, and then they flush it with heparin. Please make sure you do this.
...the cream on 2 hours before the treatments and it still stayed numb, you just have to make sure not to "rub it in" but "Glob it on" thickly" and put some cling wrap on top of it, to keep it off your shirt, then when the nurse, wipes and cleanses the area down, I still don't feel her even wiping, because it's so numb.
I usually start bouncing back about 4 days after treatment, otherwise, I just take it easy the first few days after I get unhooked, don't push yourself, I couldn't even go back to work because it wears me out alot, and I had to quit my job.
So far, I've had no problems with my port, I've had it since January, and had to get it declotted a couple times, when there was no blood return, or they couldn't get blood, yet they were able to administer meds, with just a shot of some kind of medicing they put in my port, and sat the needle there for 2 hours, and haven't had a problem since!
Good luck girl, you'll be just fine, you'll see!
Hugsss!
~Donna0 -
blood drawidlehunters said:numb....
High
How long will that cream make your port stay numb after you apply it? They are taking blood at 7:45am and chemo ain't till 9:30am...... will I still be numb for the chemo prick??? I like that word... lol ... I told ya... I am a big wuss
J
Every place is different, but where I went they never drew my blood through my port, if I was scheduled for chemo and needed blood, then it was done at the time they prepared to hook me up for chemo, so I only got one poke. Other wise my blood was drawn as normal from my arm.
I never had anything to numb the port site before chemo, so I can't tell you how long it will stay numb, it really is not as bad as you think it will be. It really isn't any different then getting a shot, I think getting a real IV is worse by far then being hooked up to the port I had.
Debbie0
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