miserable folfox treatment # 6
Comments
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Louis
I am sorry you had this crummy experience. Do you have community nurses in your area who can come to disconnect you? I have a community nurse who comes weekly, + on disconnect day she disconnects me, so I don't have to back to my cancer centre. It is an excellent service. I live in Canada, but I have read on hear of Americans making use of this type of service also.0 -
Ahhh Lou
Gosh dang it, why do they do things like that to us??? For their convenience. Damn it.
{{{{hugs}}}}
I feel so bad for you.
Oh, I also want to mention, here at Dominican Hospital, if you aren't done with your infusions by the time the chemo nurses go home, they send you upstairs to the inpatient unit
where they have a qualified nurse on duty to disconnect you, since the inpatient is open 24/7.
Winter Marie0 -
Our thoughts and prayers are with you Lou
Our thoughts and prayers are with you Lou!
I go in tomorrow for #7 FolFox. Chemo is a scary thing. Be honest with your doc and ask to take a week off! I did between 5 & 6. I had to tell the Doc that my good attitude did not mean that I am not hurting and/or sick.
Best Always!~ mike0 -
Lou, im thinking about youAnneCan said:Louis
I am sorry you had this crummy experience. Do you have community nurses in your area who can come to disconnect you? I have a community nurse who comes weekly, + on disconnect day she disconnects me, so I don't have to back to my cancer centre. It is an excellent service. I live in Canada, but I have read on hear of Americans making use of this type of service also.
Lou, im thinking about you and know how aggrevating this is with each round with a different set of frustrations with nurses, docters, treatment, schedules, and symptoms.
Everyone here will help you get thru this Lou.
I can say during the chemo treatments i had which was 5 days a week using 3 chemo meds plus tylenol, anti nausea meds, and fluid bags, the scheduled rate of delivery for all was 4 hrs. Well when i saw the drip from each of the chemo bags go drip........ drip...........
drip............. i said no way and adjusted the valve to open wider as the treatment progressed. soon the drip went drip..drip..drip,drip drip drip and got done with the treatment for that day in 90 min. I thought i was cutting the lingering delays to my advantage so i can leave the chemo lounge in record time. At first it seemed tolerable but gradually it only made symptoms worse and intensified them as i had 24 treatments.
I now highly suggest to other cancer survivors to go with the flow and sit back, relax, and march in line. I had to be different and play to the drum beat in my "DO IT MY WAY MIND". Not one of my of better moves. Go ahead I deserve to be lambasted and denounced. did i really say that0 -
Lou!
HUGS, HUGS, HUGS to you! I can really feel your frustration.
My FOLFOX #5 hit me so hard I almost sleep 6 days straight. the alternating constipation/diarrhea put my adheshions and hernia through hell and the pain was the worse. The cramping was tearful and I almost went to the ER over the weekend because I didn't think I could take it anymore. My fatigue was intolerable, none of my nausea meds worked, I actually threw up for the first time since starting chemo, I just wanted to die .... and I have to admit that I said to myself "this is it ... I can't do this anymore if I have another round like this". Then something so nice happened. I got a text followed by a phone call from one of my CSN buddies ... Thank you Gail ... and she gently told me that I could do this and reminded me that my semi-colon family who knows what I am going through was really here supporting me. I just want to let you know Lou, that I am really here supporting you.
I know how tough this is for you and I am so sorry that you are having these rough times. My infusion rate is at 6 hours now and I can't imagine how I'd feel if my rate was rushed. I'm sorry that happened to you, Please hang in there. HUGS0 -
Awww Lou!AnneCan said:Louis
I am sorry you had this crummy experience. Do you have community nurses in your area who can come to disconnect you? I have a community nurse who comes weekly, + on disconnect day she disconnects me, so I don't have to back to my cancer centre. It is an excellent service. I live in Canada, but I have read on hear of Americans making use of this type of service also.
You come here any time and just let off steam... rant, yell, curse, and do whatever you have to do to release some of that anger that is so justified against that totally inhumane treatment you were given. And please, make sure you tell your oncologist. For starters, all chemo nurses, except MAYBE for the brand new student nurses, know how nasty the FOLFOX can be if it is given too quickly. Ya, the four hours is and can be very boring... on the other hand, the slower you get it, the easier it seems to be to absorb and not get too sick. The oxi is still nasty and if you are going to react to it, you will still react... but not as bad as you will if it is given too quickly. I can't imagine them having give you it so quickly... and all because it was closing time?? And the one nurse says it "shouldn't cause any problems"??? when she would know darn tootin' well that FOLFOX is known to be rough for most people!! Grrrrrr!
As for taking the pump off when and flushing the port... I think next time you should DEMAND that a homecare nurse come out to your home. I'm not sure where you live and I'm just assuming that you do have community healthcare nurses. Like Anne mentioned above... these nurses are more angels! They are fully qualified Registered Nurses (RNs) who choose to to homecare nursing rather than working out of a hospital. Their patients are all patients who are at home.
I, also live in Canada, and this is a standard service... for all kinds of patient issues. Whether it's dressing changes from surgical wounds once you have gone home, or in our case, unhooking the pump and flushing the port with saline solution. Hehe... I usually was feeling pretty darn good for the 48 hours while I was on the pump (although I hated the inconvenience of having to carry it around), so this one time I was telling the homecare nurse... you know, I really, really need to be at the theatre office next time we need to be unhooked and the office is in the middle of Stanley Park (it's an outdoor theatre and we have an office right there at the theatre). So she said "I've got your cell number, how about if I call you when I'm heading over to unhook your pump, and you can direct me to where in the park you will be?" Sure enough, she did this, she came into the office, we cleared my desk so she could set up her "sterilized" area, she unhooked the pump and we but it in a bio-hazard bag, of which I took with me when I left for the day... and I would return the empty pump to the chemo unit the next time I went in to be hooked up again.
So, in case you have this service and you just aren't aware of it... ask your oncologist (he/she would have to set up the request for it). There is no way when you are feeling like crap that you should have to figure a way to get yourself back into the chemo unit just to be unhooked.
Cheryl0 -
Hang in there Lou!
Lou,
You can do this!!!! I am so sorry this one hit you hard and they pushed it through you. What were they thinking???? You are already half way done and you can start counting down to the finish line. Hang in there!!! You are killing cancer cells so you will be cancer free soon. We are here for you. Take care and get some rest.
Big hugs,
Sara0 -
This comment has been removed by the Moderatorsasjourney said:Hang in there Lou!
Lou,
You can do this!!!! I am so sorry this one hit you hard and they pushed it through you. What were they thinking???? You are already half way done and you can start counting down to the finish line. Hang in there!!! You are killing cancer cells so you will be cancer free soon. We are here for you. Take care and get some rest.
Big hugs,
Sara0 -
Gracie, my Med onc and medunknown said:This comment has been removed by the Moderator
Gracie, my Med onc and med onc nurse combined have 30 yrs experience together (nurse had 17 yrs in 2008) and I was very happy with her and my DR. The symptoms I had from chemo treatments were present and intense even when the rate of chemo IV bags were set for 3 and half hrs. She checked the line and bag every 30 min or more, took my blood pressure every 30 min, took my blood just before and after treatments, asked how i was doing throughout, and made sure as soon as one bag of meds were empty, another was immediatley replaced. Ive been in remision for over 2 yrs with scans that began every 3 mo to every 6 months and monthly blood tests. I cant calculate what difference the accelerated rate of drip of chemo contributed but the onc nurse staff of 3 incl the senior onc nurse didnt feel it posed any more risks. Once in a while nurse would slow rate down but didnt insist on it.
I had cisplatin, bleomycin and etopiside, 4 rds x 24 treatments0 -
Lou, I feel your pain
Folfox 7 was my last chemo session, because of issues. Monday was chemo drip and I would leave there and come back Wed about 10 am to have pump taken off. After I left on Monday, I noticed a blood return in my line so I called, long story, but they messed with pump, seemed OK, got home (still Monday)noticed if I laid down, no blood in line, so I just went to bed. When I got up Tuesday morning, pump was empty. So I did 48 hours in less then 24. Went in, could tell there was some concern, but they took pump, sent home. When I got home went to bed and don't remember much about the next 24 hours, I really should have gone to the hospital, but thought, well this what chemo is. (Hadn't found this site yet).
Long story, I was really sick, had scans and brain MRI because I was not speaking right, falling. They put me in hospital for 10 days. Onc said no more chemo, I was having a really bad reaction. It took 3 mos before I started to feel better. I am convinced that it was so bad because of the fast infusion, but no one will go there. I did recover, have been ned, but have terrible neuro issues and I am not the same person I was before chemo. So be sure your onc knows what happened, it can be dangerous. There was a lady in who increased her chemo flow and the nurses had a fit because they said it was dangerous to do that and spoke to her about it. Most people have an easier experience with chemo, but I could relate to your pain. What I have learned from this site, has enpowered me. If I have to do it again, I won't be the same nice old lady....Good luck, just wanted to let you know you weren't alone with your pain..Pat0 -
To avert any problems with pump and potential snowstormsLifeisajourney said:Lou, I feel your pain
Folfox 7 was my last chemo session, because of issues. Monday was chemo drip and I would leave there and come back Wed about 10 am to have pump taken off. After I left on Monday, I noticed a blood return in my line so I called, long story, but they messed with pump, seemed OK, got home (still Monday)noticed if I laid down, no blood in line, so I just went to bed. When I got up Tuesday morning, pump was empty. So I did 48 hours in less then 24. Went in, could tell there was some concern, but they took pump, sent home. When I got home went to bed and don't remember much about the next 24 hours, I really should have gone to the hospital, but thought, well this what chemo is. (Hadn't found this site yet).
Long story, I was really sick, had scans and brain MRI because I was not speaking right, falling. They put me in hospital for 10 days. Onc said no more chemo, I was having a really bad reaction. It took 3 mos before I started to feel better. I am convinced that it was so bad because of the fast infusion, but no one will go there. I did recover, have been ned, but have terrible neuro issues and I am not the same person I was before chemo. So be sure your onc knows what happened, it can be dangerous. There was a lady in who increased her chemo flow and the nurses had a fit because they said it was dangerous to do that and spoke to her about it. Most people have an easier experience with chemo, but I could relate to your pain. What I have learned from this site, has enpowered me. If I have to do it again, I won't be the same nice old lady....Good luck, just wanted to let you know you weren't alone with your pain..Pat
last winter while doing FOLFOX I insisted that my girlfriend and myself be taught not only how to unhook pump from picc line (my port had stopped working so a picc was put into arm instead)but how to flush the lines as well. We were give a number of Heperin and saline solution vials for that. This came in handy after one snowfall and saved me hassle of getting car service to cancer center on chemo off week for flush only visit of 10 minutes. Did this for awhile until someone ratted it out to head nurse who said we weren't supposed to be doing flushes at home.......
again, effects get heavier with each additional dose of oxi.........steve0 -
Lou feel so sorry for your issues but hang there!coloCan said:To avert any problems with pump and potential snowstorms
last winter while doing FOLFOX I insisted that my girlfriend and myself be taught not only how to unhook pump from picc line (my port had stopped working so a picc was put into arm instead)but how to flush the lines as well. We were give a number of Heperin and saline solution vials for that. This came in handy after one snowfall and saved me hassle of getting car service to cancer center on chemo off week for flush only visit of 10 minutes. Did this for awhile until someone ratted it out to head nurse who said we weren't supposed to be doing flushes at home.......
again, effects get heavier with each additional dose of oxi.........steve
not always is going to be like that , probably next round will be easer !.
Just think it cures!.
Hugs!0 -
Unhooking pump at homecoloCan said:To avert any problems with pump and potential snowstorms
last winter while doing FOLFOX I insisted that my girlfriend and myself be taught not only how to unhook pump from picc line (my port had stopped working so a picc was put into arm instead)but how to flush the lines as well. We were give a number of Heperin and saline solution vials for that. This came in handy after one snowfall and saved me hassle of getting car service to cancer center on chemo off week for flush only visit of 10 minutes. Did this for awhile until someone ratted it out to head nurse who said we weren't supposed to be doing flushes at home.......
again, effects get heavier with each additional dose of oxi.........steve
Hey Steve,
Something you said caught my eye. The head nurse said you weren't supposed to be doing flushes at home... was that because she didn't want you to be doing them yourself, or a family member/friend who wasn't "professionally" trained to flush out the port or was it for some other reason? I know I got mine done at home after every session. I was feeling fine and weather was certainly not a problem up here, but it is standard practice that a home care nurse would come and unhook the pump, do the flush and put the pump and bits into a "bio hazard" bag, which I would then take back to the chemo unit and give to the chemo nurses when I next when in to be infused. I realize that the bio hazard bag was necessary in case it ever inadvertently got thrown out into the public trash system... but what was this head nurse's fear of having the port flushed out at home?
Now that I think of it, I have a couple of options. I could have gone back to the chemo unit, but I avoid the place as often as I can ... least of which, there is no parking except in the pay parking lot where they charge outrageous fees to park there. Or, I could go to one of the public health walk in clinics... there's one a block from where I live. Or I could have a public health nurse come to my home, which is what I did. We always set a time since the pump had to be unhooked at the time it became empty... so I always had to call to tell them what time the pump was started and then they'd make sure someone was at my place 48 hours later... whether that was the morning, afternoon, evening, weekday or weekend, holiday or not. So I'm not sure why this head nurse of yours got so upset... unless it had nothing to do with the flushing, it was the fact if you are unhooking yourself and flushing the port... what's stopping you from unhooking yourself too early
Cheryl0 -
Just caught this now, Cheryl:CherylHutch said:Unhooking pump at home
Hey Steve,
Something you said caught my eye. The head nurse said you weren't supposed to be doing flushes at home... was that because she didn't want you to be doing them yourself, or a family member/friend who wasn't "professionally" trained to flush out the port or was it for some other reason? I know I got mine done at home after every session. I was feeling fine and weather was certainly not a problem up here, but it is standard practice that a home care nurse would come and unhook the pump, do the flush and put the pump and bits into a "bio hazard" bag, which I would then take back to the chemo unit and give to the chemo nurses when I next when in to be infused. I realize that the bio hazard bag was necessary in case it ever inadvertently got thrown out into the public trash system... but what was this head nurse's fear of having the port flushed out at home?
Now that I think of it, I have a couple of options. I could have gone back to the chemo unit, but I avoid the place as often as I can ... least of which, there is no parking except in the pay parking lot where they charge outrageous fees to park there. Or, I could go to one of the public health walk in clinics... there's one a block from where I live. Or I could have a public health nurse come to my home, which is what I did. We always set a time since the pump had to be unhooked at the time it became empty... so I always had to call to tell them what time the pump was started and then they'd make sure someone was at my place 48 hours later... whether that was the morning, afternoon, evening, weekday or weekend, holiday or not. So I'm not sure why this head nurse of yours got so upset... unless it had nothing to do with the flushing, it was the fact if you are unhooking yourself and flushing the port... what's stopping you from unhooking yourself too early
Cheryl
I really don't recall why they stopped us from flushing picc at home(one reason might have been I did not mind dressing/bandage NOT being changed at flushtime as girlfriend was not trained for that and headnurse felt it should be changed weekly, including the tiny clips, which made me nervous even when done by chemo nurse).....Never thought anything of discarding empty flush vials with trash--never thought of bio hazard!!!! Being this was winter time and I still hurt from surgery, besides hurt chemo was doing to me, I felt it more practical to do flush by girlfriend at home than use car service to and from cancer center for a ten minute procedure--took more time getting clothes off to make arm avaiable than time it took to flush and change dressing-can't move that quickly anymore). Chemo nurse showed GF what to do, let her flush me that day at center and that was that for about 4 weeks....
I never had need to unhook myself from pump tho I felt i should know how in case I did......Maybe it had to do with cancer center's insurance, if something were to happen at home, would they be held at fault?
In any event,I hope I never have to this again!!!!!!!
.....steve0 -
Thanks
Thanks everyone...sorry I can't respond to everyone just have been too sick with massive diarehea that I have never had and abdominal pain (stomach cramps) Fingers are hurting very bad with any degree of cold. I can't eat and have lost 12 pounds. I have folfox #7 on Monday if Platelets let me. This is about three days sooner than normal but they are trying to get me back on schedule after a 10 day delay. I kind of smile when someone says they have ONLY so many folfox treatments left. I look at it as I have too many treatments left even if it was just one. Good news did come my latest CEA is still below 1. After surgery it was 2.3 from 14.6 and has remained below 1 these last four months. Hope you are all doing well! Hugs Lou0 -
My husband and I were taught
My husband and I were taught by the visiting nurse to disconnect, flush and add heparin. She did it for the first 4 times, then we did it. We got good at it, even did it in a Wendy's parking lot once! It may vary by state or medical center whether they let you do this, but it helps to get rid of that pump! (Stage IV colon; 6 mos. FOLFOX plus Avastin ending Sept. 2010; CT scan on Monday).0 -
I think you're nurse is very
I think you're nurse is very cruel and dent emphasize with us cancer patients. If that happened to me I will really raise hell. I'm lucky because I'm also health professional and I dint think they would ever do that to me because they are usually more careful with us. But I really feel sorry for you because my ist oxaplatin infusion was very painful and I had to extend my drip from 4 hours to 6 hours and it was way before closing time but they extended their time and I just bought them dinner. My care givers are very understanding and so caring. I'm praying that this dent happen to you again. Next time demand professionalism and care from your nurse and maybe you can complain to your doctor. Godbless you!0 -
This comment has been removed by the Moderatordjm_2010 said:I think you're nurse is very
I think you're nurse is very cruel and dent emphasize with us cancer patients. If that happened to me I will really raise hell. I'm lucky because I'm also health professional and I dint think they would ever do that to me because they are usually more careful with us. But I really feel sorry for you because my ist oxaplatin infusion was very painful and I had to extend my drip from 4 hours to 6 hours and it was way before closing time but they extended their time and I just bought them dinner. My care givers are very understanding and so caring. I'm praying that this dent happen to you again. Next time demand professionalism and care from your nurse and maybe you can complain to your doctor. Godbless you!0
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