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Scans & Ports


BoBennett

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Does anyone have a preference for an all inclusive scan. I prefer a PET. It seems that they all leave something out so you must get a few different to be conclusive in all areas. I see my Onc today and we are going to discuss new scans.

My arm veins are beginning to have trouble. Also does anyone have any thoughts on port a caths.

Thanks

Bo

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Hi Bo,I don't have the choice of Pet vrs Ct.I still get Ct scans every 3 months at the VA in Pgh. Pa.They seem to be fine for me.When I asked they said this was their method of choice.(due in part to the false positives etc. on other scans.)So far any progressions of the disease have been caught very early & some form of treatment administered.

I never in my life had trouble with any nurse ever finding a vein for bloodwork.Ever since completing chemo on 12/23/03 there is a 50/50 chance every time I give blood they have to dig & shove & keep saying I'm sorry,I'm sorry,I'm sorry,while I'm clenching my teeth and squirming in the chair.Even now that I'm on blood thinners they still have trouble probably 25% of the time.

I get bloodwork 1 or 2 times a month depending to moniter my PT (coumidin adjustments).I choose to just have it done via the needle.However if I ever need to do more chemo I will have a port installed for that the next time.

It is my firm conviction that the chemo really messes up your blood along with other things.It' been almost a year since I had chemo and my blood problems continue.However on the flip side I have been stable since Jan 04.

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No real information here except what we experienced personally.

My dad did not have a port. It was easy enough finding viens until about 6-8 months in....by then his veins were shot...and it was so painful to watch him get his blood drawn and the chemo 3-4 times a week. Several times in the hospital the techs and nurses couldn't find veins and the pain on his face is something I will remember for the rest of my life. His thin arms were black and blue and it was horrible just watching, I can only image the pain my hero went thru.

I know some folks have had success without a port, and others have had a few complications with a port....but my dad always regretted not getting one. And I always regretting not pushing harder for him to go ahead and get it.

Other's will have better advice for you. Good luck.

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Bo,

I have my port in the left side of my chest. It's under the skin and the little tube snakes up into the left internal jugular. I can just barely see it under the skin in my neck, and sometimes it does feel a bit odd when I move my neck a certain way. All in all having the port has made life much easier. Curing chemo it allowed me to have my hands free, and it has been a real blessing during blood draws. Also came in real handy when I was having minor surgical procedures a few months ago. I go once a month to have the thing flushed since I'm not on conventional chemo now. I chose to keep the port because it isn't causing me any problems right now. Just remember if you have one of these things you should take antibiotics if you are having your teeth cleaned.

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My arm veins are beginning to have trouble. Also does anyone have any thoughts on port a caths.

Thanks

Bo

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Bo :

Try to get an idea from your med onc how much longer he intends to keep you on Gemzar. If your peripheral veins are collapsing or badly sclerosing or if the Gemzar pain is intolerable ( and tx is expected to be prolonged ) you may have no choice but to get a central line. About 40% of the Gemzar patients at my wife's clinic have a central line out of necessity due to vein damage and / or pain at the infusion site. The rest of the patients, including my wife, either do nothing or take a pain med and / or use a heating pad as needed when receiving Gemzar. No vein problems or related complaints with any of the other drugs. With chemo, CBCs and contrast media my wife seems to be getting poked all the time. But, there's been no problem finding veins as everybody has been careful to alternate arms, hands, etc. Good technique makes a huge difference also. One bad tech can really mess up your veins. You've got to take control in this area. The good lab techs and OCNs get it right on the first try.

Good luck.

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Bo,

I have always had great veins, but the chemo made it hard for them to hold the catheter for the contrast dye for CT scan. I am very glad I had the port, and still do.

I was diagnosed in April 2000, at NIH, which I would not consider a backward place. I didn't start with PET scan, I started with CT and MRI. I asked the doctor in August this year why I haven't ever had a PET since every one here seems to swear by them, and he told me, why bother? you didn't have a pre-surgical PET, so there is nothing to compare it to. I also got the impression, only an impression, mind you, that he didn't think a PET would add much.

Anyway, good luck, Bo, and Happy Holiday!'

MaryAnn

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John also has a port. At our cancer center the nurses really push them. They do not like sticking people. John found out the hard way why ports are needed. His vein leaked and the chemo went into his hand and they had to give him about 13 injections in that area to neutralize the chemo. He is very happy with his. If you decide to get one, there is a creme you put on to numb the area and you won't feel anything when you go for treatment. The port is sometimes tender at first and the creme helps. They may put you on a blood thinner as there is a risk of blood clots with a port.

Good luck~

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Bo,

I had a port put in prior to starting chemo over a year ago and I must say, "I love my port!" (this is an inside joke if you have seen Julia Sweeney's movie "And God said, "Ha!" about her and her brother's experience with cancer).

Seriously, I really am glad that I have one. Every blood draw, CAT scan contrast infusion, and chemo is just one very small stick and I never have to worry if they're going to find a vein or not. I would recommend one to anyone dealing with cancer.

Jane

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And from another aspect ...

I didn't have a port, because where I'm treated they don't like to do them unless they are necessary. My veins held up well, but I wasn't getting stuck that much really. I got the Carboplatin IV about once every 3 weeks or so, but took the Etoposide orally for 10 days each round. When I'd go for chemo, they'd draw my blood and use the same site for the Carboplatin IV, so in 4 rounds of chemo, I was only stuck 4 times. If I'd had any trouble, they would have been very willing to put in a port, but I just didn't need one.

Since diagnosed in June, I had 6 scans - yikes! 3 CT, 3 PET. Interestingly, the CT scans showed mass -- as in the size of the initial tumor and as it decreased in size, but continued to show "something" that turned out to be some scarring from radiation. The 1st PET scan showed uptake exactly where the CT showed the problem areas. The 2nd PET scan showed significant resolution, and again jived with the CT results. The last CT still showed the scarring, and the PET scan I had just after that showed NO uptake anywhere except for minor "expected" uptake.

It's difficult to say *this* or *that* is the way, I guess, since we all seem to be so different in our experiences!

Di

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I initially thought that having the port put in, I would be considered a "sicky". I went for it anyways and didn't look back. The only drawback with the port is how much medical waste there is each time they use it or have to just flush it out. Sometimes I feel guilty about that....but it is still worth it.

I did however get mine out about a month ago, since I am done with chemo (hopefully forever). The day they took it out, they tried to get an iv in 3 different times before they were successful - Let me tell you if I could have ran I would have.

Since it has been taken out, I have had about 50/50 chance of getting stuck more than once - my suggestion is if you have one, keep it in awhile.

ON THE PET SCAN VS. CT, I have had aobut 6 ct scans and 1 pet scan. The CT scan was much better viewing problem areas for me than the pet. Prior to my surgery I had a pet and was told that there was only 1 tumor in my left lung, the pet scan agreed with it. Once I had surgery they found 21 lymph notes positive that didn't show up on the pet. I had contradicting responses from my doctors as to why - 1 said that a few people just don't respond to the pet scan and give false negatives, the other said that the spread was too new to be detected.

Either way, I am not crazy about having the radioactive glucose involved with a pet so CT it is for me.

Wendy

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My arm veins are beginning to have trouble. Also does anyone have any thoughts on port a caths.

Thanks

Bo

//////////////////

Bo :

Try to get an idea from your med onc how much longer he intends to keep you on Gemzar. If your peripheral veins are collapsing or badly sclerosing or if the Gemzar pain is intolerable ( and tx is expected to be prolonged ) you may have no choice but to get a central line. About 40% of the Gemzar patients at my wife's clinic have a central line out of necessity due to vein damage and / or pain at the infusion site. The rest of the patients, including my wife, either do nothing or take a pain med and / or use a heating pad as needed when receiving Gemzar. No vein problems or related complaints with any of the other drugs. With chemo, CBCs and contrast media my wife seems to be getting poked all the time. But, there's been no problem finding veins as everybody has been careful to alternate arms, hands, etc. Good technique makes a huge difference also. One bad tech can really mess up your veins. You've got to take control in this area. The good lab techs and OCNs get it right on the first try.

Good luck.

P.S. To put it another way, if you get a central line do it because YOUR circumstances warrant it not because it's the thing to do or it's being done for someone elses convenience. I know patients that got a central line because they needed one and they are quite pleased. I know other patients that were talked into it without any immediate need and they regret rushing into it. For example, my wife doesn't need a central line at this time but if her circumstances change and the procedure is warranted her med onc can get her into a local general surgeon on short notice with no interruption in her treatment. They do this all the time.

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Bill, the one down side to putting in a port in the middle of therapy is that it does require minor surgery including two incisions. I have had a couple of patients who developed wound infections who had them done during chemotherapy and I think that if we had just put it in at the start when the immune system was not compromised by the treatment, we would have avoided that problem.

I usually defer to my chemotherapy nurses when recommending a port. If my chemo nurses think a patient is going to have problems with their veins, they almost always do and we end up putting the port in mid treatment. While this can be done, it is not optimal and so I usually encourage those patients to get the port in up fron to avoid unnecessary pain until we get the port and unnecessary risk when putting the port in.

My $.02.

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Thanks all for the responses. There never is an easy solution. By the responses and what my Onc said I think I’ll opt for the CT. I was initially thinking the PET would indicate more and maybe it would but considering the first 2 didn’t show any other sites maybe I’ll wait for that one and concentrate on the lung thing

Yea Fay, my nurses talk up the port a cath beneath the skin on the chest, and the Onc defers to the nurses for their opinion, they think they are worthy of having.

It seems crazy to worry about minor discomfort in the face of it all but who knows. I have not talk to anyone who has a port a cath that is bothered that they got one. They are all glad they did. I won’t get scans for another month I think I wait to decide by the scan. That is if my primary sets me up, I asked him to a month ago and have heard nothing.

Yea Frank it’s a digging thing followed by sorry, sorry. Oh well they do their best. As you said there is a flip side and I’m darn glad there is.

Bo

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Hi Bo,

Just one more thought. If they can't put in a port during chemo, maybe you could have a PICC line put in. Steve has had two - one for four months, then removed for two months, and then a second put back in for six months when chemo was restarted. You have a small tube protruding from your forearm, which is easily covered with a sleeve. The downside is that it must be cleaned and redressed weekly. The upside is no pokes at all after it is installed and no vein problems. Steve was really happy with his. (He had been scheduled for a port installation the second time but was too ill for the surgery.)

Re: scans. Steve has had multiple CT's, MRI's, and two PET's. We were told that the CT's were best for identifcation of tumors, but the PET's would show if they were actually alive or simply necrotic tissue. We were also told that PET's were not good for brain tumors - hence the need for repeated MRI's.

Good luck.

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Bill, the one down side to putting in a port in the middle of therapy is that it does require minor surgery including two incisions. I have had a couple of patients who developed wound infections who had them done during chemotherapy and I think that if we had just put it in at the start when the immune system was not compromised by the treatment, we would have avoided that problem.

I usually defer to my chemotherapy nurses when recommending a port. If my chemo nurses think a patient is going to have problems with their veins, they almost always do and we end up putting the port in mid treatment. While this can be done, it is not optimal and so I usually encourage those patients to get the port in up fron to avoid unnecessary pain until we get the port and unnecessary risk when putting the port in.

My $.02.

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Joe :

This morning I had an opportunity to ask two of my wife's OCNs a couple of questions since, as you and others have stated, the OCNs call the shots on this subject. As I expected, both OCNs stated that they have no pre-chemo screening plan to determine vein risk. Just a common sense approach. Other than obvious vein problems, including pre-existing vein problems that are brought to their attention, they commence chemo via a peripheral vein and deal with any vein issues as they arise, including having a port-a-cath implanted if warranted. They state that based on their experience other OCNs in this community use the same common sense approach. Consider Bo, the poster that started this thread. He started chemo eight months ago. Apparently without any concerns about his veins at least in the beginning. Also, as I previously stated, my wife doesn't have ' good ' veins but she's had no real problems. Two small bruises in 6 months. Good lab techs and good OCNs with good technique make a huge difference. If she runs into peripheral vein problems at some point in the future she will definitely consider a port-a-cath. Regarding risk of infection, both OCNs acknowledge the risk but consider the risk of infection due to implantation, before or after starting chemo, a minor concern compared to the much greater risk of infection over time ( esp. beyond 6 months they say ) with established central lines. They continue to say that a port-a-cath is a good idea IF a patient develops peripheral vein problems. Also, they added that patients expected to undergo long term Gemzar tx are advised to consider a port-a-cath. They have patients that have been on Gemzar for 2 + years . Also, some additional info for those of you considering a port-a-cath. The three most common patient complaints according to these experienced OCNs are episodic oozing / bleeding from the implant site, discomfort with the implant ( moreso with thin patients ) and the hassle ( mainly waiting time ) to schedule routine blood tests thru the oncology dept. ( since the hospital outpatient lab can't draw blood from a port-a-cath ). They told me that becasue of this restriction several patients with port-a-caths still use the o/p hosp. lab and a peripheral vein for their routine weekly blood work.

I hope that some of you potential port-a-cath patients find this info helpful.

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