Chemotherapy for Stage IV
Comments
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If I know I am going somewhere for a test I go by the onc offie and have them access my port ahead of time. I have had some nurses really make me miserable trying to stick it-which kills me-mine sticks way out of the skin. You can even see the 3 dots that identify it as a power port-and they still manage to miss it. They will not put the isotope for a Pet scan thru the port. They are afraid it could get stuck-and that little sucker is why the Pets are so expensive-or that's what they tell me.
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My chemo nurses do the accessing. When I had a MUGA scan they told me to let them know ahead of time and they could get someone in to access the port. I was in the er for suspected heart issues a year ago (side effect of gemzar) and they wouldn't use the port. In 1987 I had a Hickman catheter instead of the port. It served its purpose but I prefer the port under the skin over tubing hanging out of my side that had to be flushed at home and re bandaged every night!
Ronnie Kay, your GD sounds like a sweetheart!! What a treasure! I wrote to story people and asked their permission to use the quote. It suits me to a T. Every day is a gift and that is a sentiment I'm sure is shared by all my chemo buddies!!0 -
Hi, Ladies..Hope everyone is doing good. Speaking of ports. I had my 2nd one put in 11-26 because they took the 1st one out when I had my right mx in June. Well this port had not healed right and was still causing me alot of pain. I went last week to get it checked out and the surgeon wanted to redo it. Well, I get up there Friday morning and they take me to the operating room and my dr says this is just going to hurt a lil bit. (No meds or anything) And I thought this doesn't sound good. He starting sticking the numbing shots in it and they hurt like heck. They had to adjust it and try to pull what skin was left from mx over it to restitch it. And then after all that he said it may not work and we may have to put it somwhere else. I did not think that they liked to put the port on your left side because of rerouting to your heart. Has anyone else heard of this? I had also heard that your port could cause difficulty with breathing. And I have been sob for about 3 weeks. Now I am breathing better. I don't know if it was the port or the chemo as I had no chemo last week or this week. Anyway, I sure hope the port heals up and back to chemo next week. Hope everyone has a wonderful evening and no SE from chemo.
Hugs!
Terry
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My port is done by the chemo nurses, but when I was in the hospital the RN did it of course the Lab Techs can't or not allowed.
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Glenna..you are so right. Everyday is truly a gift and that is why we call it the Present.
Terry
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Terry...sorry to hear your port story...it had better work
I don't think they'd have let you go if it didn't show that it'd work (mine do xrays to make sure). I've been told that there's never a reason to have a procedure be painful..and I really can't think of any time that it was. Maybe they could've used a very small amount of conscious sedation drug? If there's a next time, I hope you can ask for something Dr said if they're unable to put the port in the same spot, they go for the area in between the breasts (cleavedge area) for good access to the heart. I have the power port, like Glenna, which does stick out. Dr said that since he was putting it in the same spot it'd been before, I would have swelling and bruising due to working through scar tissue. I did, but 3 weeks later the bruises are gone and the swelling's going down, just not enough to see the dots. Luckily I've never had anyone miss the spot! It bothered me for the first couple weeks when I'd take deep breaths, but that subsided. Hoping treatment goes well & port's perfect! 0 -
tlangston07 - I had a power port put in for the first time 3 or 4 years ago and it is on the left side. I have never had any problems with it and have not heard they did not like to put them on the left. Maybe someone else can tell you more about that.
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This discussion of power ports got me surfing. Is it true that the contrast for ct scans can be administered through the port or am I getting mixed up between the drinkable contrast and the IV one during the scan?
That would make me get one for sure. Still on pill form chemo so haven't considered this procedure.0 -
Chickadee - They can use the power port for the constrast in a CT scan. They have used mine ever since I have had it in. When they scan they do a scan first, then inject the dye and scan again, don't know the reason for doing it both times but that is how mine is done. I do know it has to be a "power port" that some of the old ones are not power ports and can not be used for the dye. Before I had the port put in and had a CT scan they could not find a vein and ended up using one on my index finger and told me when they put the port in to make sure it was a "Power" port, so I mentioned it to the doctor putting it in and he said that is all they use anymore so some people that have had their ports for years may not be able to have them used for that.
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My first port was placed on the left side at the same time I had a right mastectomy which was in 2000. If port is being placed at same time as mastectomy, that may make a difference as to what side they place it in. My new port (power port) was placed on the right side. The newer ports are different than older ones.
Not all nurses can access it (they need certification). Onc nurse left a lead in the port for radiology, so radiology did not actually access it. It was the dye that was injected into the new "power port," for my CT scan on Monday. The CT tech told me that older ports could not take the pressure that the CT scans inject the dye. That dye is injected by the CT scan machine itself. However, the flushing of the port after the scan was injected by the CT tech via syringe. I then went back to my onc office and the nurse there removed the lead and de-accessed the port.
Tip from onc nurse: The onc nurse explained to me never to let anyone flush or inject anything into the power port with a syringe under 10 cc. A 3 cc syringe has much more pressure than a 10 cc syringe. The surgeon who placed my new port gave me an instruction book which said the exact same thing.
Terry: I hope they are able to get to the bottom of your port issues soon. Good thoughts to you.
Jean
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Just to clarify, the contrast you drink before a CT.....do you still have to drink that in addition to the port administered contrast?
My CT's involve both processes. Drinking about an hour before and then the IV administered as the CT is humming.
I'd love to get rid of drinking that yucky stuff along with avoiding all the vein hunting every 3 months.0 -
Chickadee - I have never had to drink the yucky stuff so I don't know what that is used for, I am sure the yucky stuff and the IV stuff have their own purpose, just do not know what they are
, sorry I can't help with this one.0 -
Sorry, Chick, but you would still have to drink the yucky stuff.
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Awe shucks.
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Well, looks like this is the next thread for me. I'm starting Doxil tomorrow. Onc says its a strong cancer fighter while somewhat gentle (as chemos go) on the body. All I know so far is that I'm not suppose to lose my hair and I don't need a port. Anyone else been on this? I wouldn't mind hearing your story so I feel like I'm going into this somewhat informed.
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http://chemocare.com/chemotherapy/drug-info/doxorubicin-liposomal.aspx
I'd want a port, for sure.
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I had a power port in the begining they did do the contrast in it. but it got infected and had to take it out. if i am ever on iv chemo again i sure hope i can get another my veins always take multiple sticks. wishing everyone lots of love joy and blessings
chris
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Thanks ya'll for all the info..mine is also a power port and with the skin so thin you can see the dots. I will find out Monday if it gets to stay.
Chick-I have scans tomo and they already gave me the great stuff to drink plus I get the contrast.
Frapp- I don't know anything about Doxil but hoping it works great for you..Woohoo on not losing your hair. Mine is just growing back from my 1st chemo. So far on on the gemzar/carbo I haven't lost it yet.
Hugs!
Terry
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The CT scan I had Monday was done right after my chemo drip because of chest swelling, so I did not have to drink the yucky stuff. The CT scan I had before Monday's, I did have to drink the stuff. They have a new drink that is not like "chaulk." It was more like flavored water and came in a bottle like bottled water. It was much easier to drink that the chaulky liquid.
Onc called last night with the results of the CT scan......more nodules and rising tumor markers. I had just started my 3rd month of weekly Gemzar. He will discuss more with me at Monday's appointment but said he has seen enough to know that Gemzar is not working. He is thinking about starting me on Abraxane, but wants to discuss this with his colleagues.
What is Abraxane like?
Jean
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Hi Judie, I started Abraxane on Monday and I'm sick as a dog, gi track is inflamed, cramps since Tuesday "d" which I call "dragons breath" is at #13 so far. I feel ill.
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For my last two CT scans I had to drank the "smoothie" at home an hour before leaving for my scan. That stuff make me gag and almost vomit! I asked if there was any alternative to the smoothie and they said YES there was a water based one that I could drink at the scan center and then leave for an hour and a half to two hours and come back and have my scan. I will definitely try that next time!
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RonnieKay, I have bone, lung and skin mets on my left shoulder and left chest. I just finished my 2nd cycle of Halaven and my skin mets are showing dramatic shrinkage. Several of the nodule on my chest are gone and the ones on my shoulder (which were much larger than those on my chest) have shrunk to half or less. I get TM drawn today and will have the results next week.
Regarding ports, even with numbing cream, accessing my port is more painful than a vein stick, so I only have them access my port when I'm getting chemo or if I'm an in-patient in the hospital. When they do labs and CT scans, I have them use a vein.
Jan
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gemzar didn't work long for me either and then I went ot taxotere...
Sandy
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I had great results with doxil, unfortunately SE's caused my onc to discontinue. I really suffered from hand and foot syndrome. Feet peeled, turned purplish, itched, and of course neuropathy. I hate having to stop a chemo that is annihilating my cancer. Hope the taxol has the same effects on the cancer. So far SE's have been negligible. I never have a problem with the port. No pain at all. Guess I'm one of the lucky ones.
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Adriennek here, saying Hello to all you caring Sisters
I had a mastectomy January of '92, no nodal involvement. Doctors at the time said I required no chemo or radiation. Mammograms every year - no problems. Two years ago I began to have painful backaches but thought nothing of them, having the attitude that we all get backaches.
Nov of 2011 I got an xray then an MRI which showed only bone metasasis but thoughout my body! Too much to radiate beyond 10 rounds on my left pelvis for severe pain. Stage 4 TNBC. I don't understand the info that many of you give below your names. All I know is that I got a port on the right side & got Ixempra & Xometa every 3 wks with no SEs except for tiredness. I was depressed & thought I was going to die any minute. The port stuck way out & was replaced by a doctor in Seattle by one on the left. It sticks out too but otherwise is not bothersome. The scar on the right healed slowly but is ok now.
I moved from Seattle area to Portland OR area & a new doctor. After 9 months the Ixempra stopped working. There's a little fluid in the lining of one lung & a "spot" near my heart now. I'm on my fourth round of Xeloda, 2 weeks on & a wk off. I was afraid of it due to all the SE warnings but am tolerating it well, physically. People tell me I look wonderful, which is nice but emotionally I am not so sure. My doc tells me Xometa is not as important now, just once a month via the port. Also to clear it out.
I must say I'm surprised that so many of you have had problems with your ports. I have had no problems with infusion of Ixempra or Xometa. (Xeloda is pills.) My doc called a few weeks ago & said I'm "stabilized". How is that different than "remission"? I'd appreciate your thoughts and info. Thanks!
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Hi Adrienne: Welcome! I don't know if I can answer your question about stable vs remission right or not. To me, stable would mean no area of concern is worsening. (That's good news for you!). Remission would be areas of cancer are shrinking back. I hope someone else can clarify that for us as I am really not sure. I read the term "NED," and know that it stands for no evidence of disease and I never understood (for stage IV people) how there can be NED. Maybe someone can shed light on that for me too.
I started Abraxane on Monday for new nodules in lung and rising tumor markers. My port is working beautiful and I am happy to have it. Three weeks on and one week off for the Abraxane. Hoping this one does the trick for me. The road is getting a bit long to find the right one.
JCB: I have skin mets too. So far, none of the chemos have affected them.
Frapp: I've not had doxil. Sorry I can't add anything for ya.
Jean
Jean
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Sandy - how is the Taxotere working for you? Or is it too soon to tell? I don't see much Carboplatin(sp) being used...jes curious why that is.
Adrienne - have to agree with Jean - I was IV w/bone mets from get go. Had chemo TCH (Taxotere, Carboplatin, Herceptin). Have been NED for 15 mos. Still doing herceptin every 3 weeks and an Xgeva shot every 6 weeks. My onco says it's the Xgeva keeping my bone mets in check, and herceptin keeping the ILC in check. Plus, of course, am on AI's, aromasin nightly. My thot is,,,,NED, or Stable, means the tx is working but the cancer/tumors are too small to be seen by scans. I believe it is there, and will always be there. I LOVE to hear NED...it's better than the alternative. Remission to me means pretty much cured and I kno that is not possible for IV's, so I don't like to use that word. Case in point, recent talk with my daughter (41 yoa) she thinks I am cured/in remission. She is having a hard time wrapping her mind around all this. Can't say I blame her...but maybe someone else has another explanation of those terms.
Jean - praying they can find something to help with the skin mets (((Jean)))!
Hi Glenna!! still praying the Taxol will work for you. When will you kno if it is?? I too have been lucky with my port. I jes can't imagine not having it. I prolly sed that already..saweee! But...I dont' think mine is a power port like some of you mentioned. NO one accesses it Xcept the chemo girls. No dyes, no neuclear junk...nothing. Only labs and chemo in my port. I am also thankful I have a good vein on my left arm for my scan iv's. :-)
Love, Prayers, Positive energy...to all...always!!
Sue
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Well Mema not sure...it is ok, 3 rounds, starting 4th on Wednesday....SE's include eyes watering so far, nausea, nose bleeding when I blow it and nose running......other than that ok.....
Thanks for asking.
Sandy
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I mentioned NED to a clinical trial nurse once at MDA and she said that would not be technically correct because the damaged areas of bone mets would always show up on scans. Remission and NED do seem to be compatible terms but I think NED might be a better expression because we know it doesn't mean cured.
We dance with the stable boy, Reggie and NED........I suppose one more fella on the floor couldn't hurt......Remy? I don't know.....hmmm. Remy could be the bandleader!0 -
Hi Ladies..well I had to have a new port put in on the left side last wed and started adriamycin on thurs. So far no really bad side effects. My legs hurt and a little nausea, but I can handle this. Praying it doesn't get worse.
Hugs!
Terry
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