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Finally

andreae
Posts: 238
Joined: Sep 2003

Hi everyone! So I finally got a second opinion. Overall, I did like the doctor - he is a specialist in young adult's with cancer. He will try to get me onto a clinical trial, but if they are all closed he's going to start me on Xeloda and oxaliplatin on Monday. Oh, and the PET scan indicated that I do have mets. in my lungs but there wasn't any hot spots in my pelvic region or my liver, so that was encouraging. Since my veins are non-existant, he suggested a pique line, but I refused because I had one before when I was doing 5FU a la fanny pack and I hated it. No easy bathing, no swimming, no tank tops... NO WAY! He then went on to say that perhaps a better alternative would be the Porto-Cath. Does anyone have any experience with the Porto-Cath? I'm pretty much sold on it but my mother is concerned about risks and maintainance. The only thing that I didn't like about the encounter was how sad the doctor looked. I HATE THAT. When the professionals begin to look dejected and start talking like I'm already dead and buried, well, it really eats away at my morale. The opiniating doctor also asked if I could "psychologically handle more treatment". Argh. I do not need their sympathy or pseudo-psychology, I need their medical expertise. I can handle my own "psychological state" thank you very much. They also treat me like a baby. When I was first diagnosed they actually asked me if I knew where my anus was? I'm 21, not 2. Anyways, I told my doctor that I realized my situation was serious, and while my goal for treatment was to extend my life for as long as possible while preserving a decent quality of life, I'm also open to the possibility of a miracle. Basically I told him I'm ready to fight and, if he wants to treat me, he better be on my side - I guess I'm getting pretty aggressive in my old age. Sorry for the long message, but in brief, I'm wondering if anyone has feed-back on 1) Porto-Cath 2) Xeloda or oxaliplatin and 3) how to deal with weepy doctors. Thanks.

Lisa Rose's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

Goodmorning Andreae ,

It I ever get to the point where I need a second
opinion I'II have to come to you . Looks like
you have all the ground work done. Good Job Andreae ....

I had a a porto-cath and if I ever have to do it again I'll have another . It will make treatment 100% easier on you . No looking for veins or worse yet when your almost finished your treatment the vein colllapses and having to start all over again. I DON'T THINK SO ....

As for the long term care Stacy could answer those questions , as I had mine removed after treatment was complete .

Forget The Weepy Dr,
Lisa

WLawrence
Posts: 6
Joined: Mar 2003

I have had one for about a year. It is the greatest thing sliced bread. The only thing you have to do is get it flushed once a month. of course you will have to have minor surgery to install it. There is no restriction your activities.
Walter

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Andrea,

I do have the port a cath. My treatments were over July 2002, and I still have it implanted. I plan to get it removed on my 5 yr clear anniversary, "just in case." As far as maintenance, you don't even see it. It's about the size of a watch dial under the skin, near the collarbone. Nothing sticks out or anything, and nobody even knows I have it. It gets flushed once every 3 months, and is totally painless. Takes all of 7 minutes tops to have done.

Hope I helped,

Stacy

KrisS
Posts: 232
Joined: Apr 2003

Andreae-

I have had my port since June '02 and love it. Despite the nurses telling me that usually they are put in under sedation, I had a cheerful interventional radiologist who didn't mind doing it under local anesthetic. I went right back to work. One thing, I am pretty thin, and he told me if they run the catheter over your collarbone, if you are thin, it can be uncomfortable. If you are heavier, then they do run it over your collerbone without problems. Since I am thin, you can see mine under the skin but it is no big deal. The one concern is if they get infected. Oncology nurses are trained to do a very careful cleaning of the skin over it. Other nurses may not have so much experience with them, and I always watch to make sure they are careful with the care.

When they give contrast for a CT scan they still will want to put in another IV catheter, because many of the ports are not designed to tolerate the rapid injection of contrast necessary to visualize the liver well.

As for doctors- remember they don't know you well. People come to them with all sorts of ranges of emotions, and sometimes are too afraid to talk about their fears. Oncologists do have to address such issues. There are people who are depressed enough that they need antidepressants. Others lack the tenacity to keep fighting, even if they have a very minor setback, and need other support. I am a pretty upbeat and matter of fact person. I think it took my oncologist a while to realize that it was not a "front", but really how I am. I developed a really good relationship with him once he knew me better.

As for being treated as though you are unknowledgable- once again they don't know you well yet. A little gentle ribbing about how they are treating you sometimes lightens the mood, as well as making them realize that you do have a clue. There really are adults who are incredibly unknowledgable about their body, the generalities about treatment etc., and don't want to know more. I met a person on a clinical trial for metastatic colon cancer who could not tell me the names of any of the previous drugs she had been on for the last year! On the other hand I have met people, like those here, who have become incredibly knowledgable about every detail of their disease and treatment.

As for the sadness, I think it is natural for doctors when they encounter people with a disease as tough as what we have, and we are younger than they are. It does not necessarily mean that they are ready to give up on us, however. I think being cheerful, and occasional humorous, kept them from staying in that mode with me.

I have had 10 doses of Oxaliplatin/Xeloda since June. It has been quite tolerable. I am a bit tired the first 5 days. I get irritation of my hands and feet on days 4 and 5 post Xeloda, which got much better when my onc reduced my dose.

I have the common oxaliplatin cold induced neuropathy which is annoying the first 4-5 days. If my hands get really cold, they tingle so badly that I can have trouble picking up small objects. Oven mitts come in handy when taking stuff out of the freezer. I just bought super duper ski gloves for this winter. Drinking/eating cold stuff at that time is like eating Pop Rocks. The signs that I get from cold exposure go away as soon as hands, mouth warm up- just annoying while it is happening.

The big concern about oxaliplatin is a more long lasting neuropathy that might limit their ability to give it, even if it is working on the tumor. My oncologist is trying giving me infusions of calcium/magnesium before and after my oxaliplatin, since there have been some preliminary reports in Europe that this may help reduce the incidence of neuropathy. Although it is not standard treatment, I lobbied for it, because oxaliplatin is the only thing that is working for me.

I used to get queasy (although I almost never have vomited) 2-3 days after oxaliplatin. There are a variety of antiemetics available, and I tried a variety of them before hitting on the right combination to eliminate even that queasy sensation without making me too tired.

Best wishes,

Kris

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

andreae -

YOU ROCK!! You are my hero! You are the epitome of attitude. I wish everyone had your spunk.

I don't really have anything to say about a porta cath, Xeloda or oxaliplatin, and as far as weepy doctors... I could tell you about the urine specimine/apple juice "incident" - that made my doctor cry.

I had recently had my catheter removed and they were taking incessant urine samples. I guess as a way to spur on the urine production they kept bringing me apple juice. Now, I like cider, but I HATE apple juice and I told them they could quit bringing it to me. Being good Government employees, they didn't listen to their patient. So... next time I got the apple juice and a urine specimine cup, I poured the apple juice into the specimine cup. Oh, but did I stop there? no...

When the nurse came in to take the cup, I mentioned that it looked a little cloudy. She agreed. I opened the top and told her it seemed to have a funny smell. She was curious. Then I took a big swig and told her it tasted funny, too. I thought they were going to call a code on her. When I told my doctor the story, he cried.

Anyway...

I didn't have veins either, but I refused to get a porta-cath (that's what they recommended for me, too - sub-clavian). I think it was denial. I endured up to 90 minutes of digging with needles while they tried to palpate a vein for my chemo. Fortunately, I was done with my treatments about the time I decided I really did need a porta-cath. Had I had to go one more round, I probably would have had it installed.

Sorry I couldn't be any more help, but - as always - everyone else gave you the good scoop. I'm just chiming-in as usual.

Be well and ROCK ON!

- Bob

P.S. No, they never brought me apple juice again. (I knew the question was burning in your mind).

andreae
Posts: 238
Joined: Sep 2003

Bob - YOU ARE SO MUCH FUN. If the world had more ppl. like you... well, it sould defitely be a more exciting place!

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