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Question about Chemo "Port"

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

Hi my friends. I wanted to ask you about the chemo port that will be put in my neckbone I think my doctor said. He said it will be in me the whole time of treatment but that only the first week and last week it will have the chemo going through by needle. He said I will have 25 sessions of radiaton. Does that sound like anything some of you had? Is it weird to have the chemo port in your body and after it comes out is there a scar? I was wondering about infections while it's in there.

RoseC's picture
RoseC
Posts: 509
Joined: Jun 2011

Hi Chris,

My chemo port was inserted into the fleshy area under my left collarbone. It was done on an outpatient basis - light anesthesia, didn't hurt at all. Maybe a little sore for a day or two, but no pain. I didn't have any infection.

I had 30 radiation treatments - Monday through Friday for six weeks. The chemo was administered on weeks 1 and 5. This is standard treatment for anal cancer.

The chemo medicine comes in a fanny-pack-type-thing with a small pump in it that you can wear either around your waist or across your chest. The nurse will run a very narrow tube from the fanny pack into your port and that's how the chemo gets into your body (inside your body, there's another teeny tube that goes from the port into one of your arteries).

Most times they apply a little lidocaine to the skin atop the port to prevent that prickling sensation, then they'll insert the tube through a needle into a plastic center area in the port. The needle comes back out and only the tube is left in your port. Ask them to show you the port before they install it and you'll see that plastic center area.

It all sounds very confusing but is actually not bad at all. You'll carry the fanny pack around for 4-5 days till all the medicine is gone. It's a bit awkward but not painful. After the 4-5 days, the nurse will remove the tube and you're on your way!

Yeah, it feels kinda weird to have that port in there - but it's not painful or anything, just weird. :)

Edit: The port stays in till you're finished treatment, actually a little longer. After it's removed, it does leave a small scar and possibly a small indented area in your chest, but it's not very noticeable at all.

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

thanks for explaining it to me i really appreciate it

mp327's picture
mp327
Posts: 3075
Joined: Jan 2010

I had a chemo port and had absolutely no problems with it. The procedure to insert it was not bad at all and just a little pain and discomfort afterwards. I had it under twilight anesthesia and it was fine. Yes, it will leave a scar. My interventional radiologist put mine in and also removed it using the same scar line and he did a wonderful job. It's not all that noticeable.

Since you are receiving 25 radiation treatments, having chemo on the first and last weeks makes sense. I had 30 treatments, so my chemo was done on week one and week five.

Having the port is a good thing, as chemo can really damage the veins. I would recommend asking for a prescription for Lidocaine cream which you can rub on the port area one hour prior to getting stuck, which will numb it up and you'll barely feel the stick! I really missed not having my port when having blood draws after it was removed because it was painless.

Infections can occur, but I was given a course of antibiotics to take after the procedure. They will also periodically flush your port to keep it in good working order, which just involves an injection of saline and sometimes Heparin.

It's really not bad at all, so please don't sweat this!

AZANNIE's picture
AZANNIE
Posts: 395
Joined: Mar 2011

Welcome to the discussion group, but sorry you have to be here, too. As you've found out there is a wealth of information here. Wish someone would compile all the information and distribute it to medical oncologists and radiation oncologists to give to patients!
RoseC and mp327 described their experience with the port very well. Mine was "installed" in March and I still have it. I'm almost 4 months post treatment and hope to have port removed after next P.E.T. scan. I attended a "chemo class". The chemo nurse explained the chemo and even showed me the port a cath. Mine is under my right collarbone. Before my port was accessed the nurse sprayed some numbing spray on it, but the lidocaine cream sounds like a great idea. You just have to remember not to go anywhere without your fanny pack while you're tethered to it. At night I would put the fanny pack on the bed beside and one time I almost got out of bed without the pack...
I had 30 radiation treatments and chemo on 1st and 5th week. The port isn't a problem and doesn't bother me.

7243
Posts: 223
Joined: Feb 2011

Hello Chris ... Sounds like your on your way now! I had a Bard PowerPort placed surgically. This is actually the best way to go (my opinion) and decreases the likelyhood of infection given it is covered by your skin and flesh. Mine was done under sedation and although it hurt after for a day or two, it was not so bad. It is under your skin like our other friends said and it is accessed for your chemo and blood draws, when necessary and can actually be used for your scans when contrast is needed. They put the "super-glue" type closer on it so no stitches need to be removed. However each place may handle this differently. I had a nurse practitioner put mine in ... she was terrific and given this is her full-time gig ... she was terrific. It is done under fluroscopy/x-ray for safety and immediate feedback on the correct placement.

At the cancer center where I had care, they would "freeze the skin over the port with cold spray (if I wanted it) and numb it with lidocaine" ... this all helps when you're feeling like a pin cushion! Once that bugger is healed you can shower with it.

Very likely they will give you the Mitomycin in one infusion on the first day of your first and fourth treatment week and send you home with the 5 FU on a pump that looks like a grenade in a "fanny pack". You'll need plastic shower guards to place over the connection site to your port when you take a shower. I found it a bit difficult to sleep with the fanny pack, so I hung the pump in the pack at the head of my bed. That worked for me and I hung it on a hook in the shower in the fanny pack. Just some ideas.

I had the port removed after my 1st 3 month follow-up/assessment of response to treatment was "all clear". I have a small scar and it hurts from time to time ... like most scars do. It's my badge of honor and you can hardly see it.

As for the chemo ... I took the anti-nausea meds as prescribe and had no nausea or vomiting ... sort of malaise feelings only. I had mouth sores and used "biotene rinse and a portable spray" I carried with me all the time. Force fluids .... and I mean a lot of water. Many liters per day. Chemo is tough on your kidneys ...

As for radiation ... I had 29 treatments. This is different for everyone based on stage. The chemo is the same 1st and 4th weeks (although dose is based on your weight...the chemo pharmacists calculate this). You're stage is early as I recall. So the number of days (or fractions) of radiation and the dose is dependent on the size of your tumor. They generally treat the tumor, canal and "at risk" lymph nodes" ... the ones this cancer generally goes to if it decides to travel. This is a nice safety thing. See the NCCN guideline for all this information. This treatment is the standard Nigro Protocol, named after the wonderful physician who did the research so that folks like you and me have this option vs. what used to be the standard of care ... Abdominal Perineal Resection or APR ... AKA huge surgery with permanent colostomy. Found early, Anal Canal cancer can generally be treated with this combined chemo-radiation approach.

NOTE: This is all my experience and opinion and you should always ask your oncologist and radiation oncologist their opinion and guidance.

Chris ... for me it was the "cumulative" effect of the treatment that was difficult. What I mean is by the last radiation therapy session I was "worn out emotionally and physically". The fatigue was almost debilitating for me, however over the months I returned to normal ... 9 months out now. This treatment takes a tool ... however, you are young and healthy like me, and should go into this with confidence you will do well. Small frequent meals, a daily walk, meditation or prayer (or whatever you do to tend to your soul) will help. Tryo to Go out and do things with your friends and family as long as you can .... continue to live as "normal" a life as possible. Try not to "become" this disease ... try not to give it that power, although I really know how hard that is. I say that because I did give it that power and that is the thing I would do differently in retrospect. Give into your fatigue and emotional lows when you must ... try not to let it "have you". Okay enough on that. Perhaps, if you're currently not, share this blog with your sister since it sounds like she's going to be a big part of your treatment and recovery ... "your care giver". And perhaps she'll want to attend a care-givers meeting to learn how to assist you best? Just a thought. My husband was the best, however watching me go through this took a different toll on him.

Hope this is helpful! Take good care dear friend .... Thinking of you. Keep us informed.

Phoebesnow
Posts: 451
Joined: Apr 2011

I had a picc line, which was removed the day of my last chemo. This worked for me as I am a surfer and also I do a lot of physical work.

z's picture
z
Posts: 1267
Joined: May 2009

Hi Chris, yes your getting the standard treatment for anal cancer. I still have my port, and I completed tx on 6-30-09. I kept mine because of pre cancerous polyps in a colonoscopy. After April of 2012 on my 3 year colonoscopy I will have the port removed after finding all is well in there. I have had no issues at all with my port, and I forget its there. You have been given great advice. I wish you well, and keep us posted. Lori

Phoebesnow
Posts: 451
Joined: Apr 2011

I would like to know what chemo they are planning on using and how often it will be administered. There seems to be some differences here and I am not sure why. I had 5fu administered thru a fanny pack mon-fri, week 1and 4, I also had mitomycin administered in the first week and again in the fourth week.

I would be interested to know who did not have that second infusion of mitomycin and what there prognosis is.

RoseC's picture
RoseC
Posts: 509
Joined: Jun 2011

I had Mitomycin both times, but because I had mouth sores after the first chemo treatment they reduced the amount of mitomycin on the second round (although I don't know how much it was reduced by).

I'm three years out now - doing fine. I have my three-year dre coming up on Tuesday - I expect all to be fine but will post results after the exam.

mp327's picture
mp327
Posts: 3075
Joined: Jan 2010

I believe the NCCN guidelines recommend Mitomycin/5FU in weeks one and five, with the Mito given in one infusion on day one and day 29. The 5FU is usually delivered via pump over a 96-hour period on days 1-4 and 29-32. The dosage for these drugs depends on several factors. Some people only get one round of Mitomycin, due to it's toxicity or just the physician's decision. Also, in any patient who is HIV+, Mito dosage may be reduced. As for radiation treatment, the number of treatments is determined by stage of the tumor, with the maximum dosage of radiation one can receive being 59gy. Anything more than that leads to necrosis of the anal area, which can lead to infection and necessitating permanent colostomy. Most or all of this information is available in the NCCN guidelines, which I encourage everyone to view and print out.

z's picture
z
Posts: 1267
Joined: May 2009

I only had one infusion of mito, on the 1st chemo week. My oncologist feels that mito is very toxic, and only wanted me to have 1 infusion. I completed tx 6-30-09 and am showing ned, to date. Lori

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Me too Z...Just one infusion of mito...I finished treatment 8/14/08......And i had a pik line...

7243
Posts: 223
Joined: Feb 2011

I hope I didn't create confusion with my response ... I had the standard protocol of Mitomycin and 5 FU on per NCCN guidelines and drug administration guidelines. With HIV and other chronic illnesses, this may be modified to compensate for risk ... standard of care is one thing, personalized care based on evidence is the job of the physician, so things certainly are tailored based on patient circumstances.

As for how to administer the chemo ... each of us should get an informed consent and make a decision as to what would work best for our life and lifestyle. I selected the port after having the choice between IV, PICC, or PORT. Also ... some folks have patients come in daily for 5 FU infusion vs. the pump ... there are many ways to "skin a cat" safely and reach the same end point. Sometimes we have choice, sometimes not. These agents are generally given "centrally" as they destroy tissue if the infiltrate outside of the vessel.

That being said some folks actually have their chemo through a regular IV as this is a relatively short duration chemo. It is all subject to the practice pattern at the cancer center or treatment center you go to as I understand.

Activity is not limited with a port placed under the skin....except for the 1st couple days after insertion ... and it can be used right away. And I wanted something that decreased the likelyhood of infection given this is a central line.

Chris .... google; PICC line, Bard PowerPort as examples.

The NCCN guideline is the best reference re; chemo and radiation. And your physician.

Sorry if I confused the issue ....

Angela_K
Posts: 374
Joined: Jan 2011

30 rounds of radiation
1 dose of mitomycin the first day and 5FU for the remainder of the first week and then final week of treatment. No second dose of mitomycin. Prognosis is excellent. Stage II or possible IIIB.

mxperry220
Posts: 368
Joined: Mar 2011

Chris,
I wore my 5FU pump pack 24/7 for 4 days for two seperate weeks. I think this is the normal chemo process for the 5FU. I placed the pump pack outside my shower door when I took a shower (no big deal). I placed the pump pack on the bed opposite where I was sleeping.

They also administed the mytomycin 2 times through the port in my chest (no big deal). There was no pain.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Chris, Most people have a port but my dr wanted me to have a PICC Line. The PICC line is inserted like a IV but in the upper part of your arm. I was scared to death but the procedure was OK. They deaden the area just like they do when you receive an IV. I really did not feel anything but pressure when he was inserting the line. If you check out a PICC line instead of a port and decide on the PICC, make sure they do not attach the line with stiches. There is a sticker that sticks to your skin that will hold the line. The best thing I liked about the PICC was when it came time to take blood test, they could pull the blood out of this line. I was not stuck one time with a needle throughout my whole treatment. I even had to go into the hospital and they administered everything through the PICC line.

I had 33 radiation treatments with my chemo on the first week and the 5th week. I carried the fanny pack like everyone else. I ended up carry the fanny pack in a draw string back pack which was easier for me.

Remember to research and ask questions on line. It is so much easier for your mental attitude to know what to expect so when the doctors are telling you stuff you can ask questions. This alone got me through a lot of scary times. Remember we are here to help everyone who has to come to this site and go through cancer as we have.

Have they told you what type of cancer you have? Have you had a PET scan yet? If so pleaSe let me know. Talk to you later and hang in there. :o) Cindy

azgal
Posts: 31
Joined: Oct 2011

My chemo rounds were inpatient at the hospital for a week each time, 96 hour drip each time, so I never had chemo at home. I started the chemo drip via an IV line, then was switched to a chest port almost immediately after starting the drip. Most install the ports under at least twighlight sleep, but mine was installed in an emergency situation without anesthesia, which I mention only because even then it was very doable. I am sure you will come through it just fine. :) My chest was tender at first and bruised for a few weeks but I got used to it being there after the initial soreness wore off.

The port is always kept covered to help prevent infection and they are very careful about that. If you have tape or latex allergies let them know that upfront and they will use a product you are not allergic to.

If you're a side sleeper, making sure they install the port on the side you DO NOT prefer sleeping on is worth it's weight in gold for sleeping comfort. I avoided that side for a while but eventually could sleep on the port side, too. The port left a quarter-ish size scar with a thin line running in the middle of it from edge to edge of it, and all faded over time, and the neck scar is almost unseen, just a very short, tiny, tiny, thin line. The pokes to access the port are big pokes with a thicker than average needle but they're very quick pokes and the skin is numbed first. I wish my doc had agreed to go with the port to begin with, so I think you're fortunate that your doc is going the port route from the get-go.

There is the "gold standard" treatment for anal cancer that your doctors should be following. Are the radiation and medical oncologists well experienced in treating anal cancer and are they working with others on the team that are highly experienced (like those that will be mapping for radiation), or are your docs at least consulting top docs and if so who are they, which, along with getting expert second opinions for proper staging and mapping, is extremely important. How many anal cancer patients have they treated in the last 2 years, the last 12 months? what are their stats? and so forth. Are they doing combo PET/CT & MRI for accuracy? Do they offer, and are they experienced in, both IMRT radiation and 3D radiation and which are they suggesting as best, and why? How many patients have they treated with each type and what is their stats over 2-3-5 years and beyond for each type?

Quickly educating ourselves, getting second or third opinions, asking questions like you are, thoroughly questioning doctors about their anal cancer treatment experience and suggested treatments, and literally fighting for our life to receive what's best for us in the midst of everything that's going on can seem overwhelming, but this is the very time we need to take charge of our care (we are in control of that and have every right to be) to ensure we receive the best possible staging and treatment.

The average anal cancer patient that has done their research and is connected to a knowledge base of those with anal cancer has more experience and knowledge about anal cancer than the average Oncologist. Sometimes we need to inform them of the best options.

It's great that you're asking questions. Never stop. :)

azgal
Posts: 31
Joined: Oct 2011

edit....Finally figured out we can PM and how to PM. Chris, you have a PM.

RichardSF
Posts: 2
Joined: Nov 2011

I didn't have a port put in, so I'm not going to reply to your specific question on here: I think others have done that: (I had chemo, 5FU and Mitomycin, straight into the vein in my arm, in the oncologist's office - but that was 21 years ago).
I'm hiv+, and was at the time in 1990, so that complicated things too.
I've just discovered this group/forum, which is a wealth of cancer support, as well as the Yahoo anal cancer group, http://health.groups.yahoo.com/group/anal-cancer/ There are several men who've had anal cancer there.
If you have specific questions about male 'stuff' please feel free to send me a message.
As scary as this diagnosis is, it is treatable and curable: and you will get through it.

~Richard

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

i will definitely join that group...i have been so lucky to have so many wonderful people comment to me but i am sure i havent thanked each person because I dont seem to get notices when people comment...so sorry to all of you that have commented and helped me and i didnt personally thank you

azgal
Posts: 31
Joined: Oct 2011

It's wonderful to have you here!
Thanks so much. :)
aka: Aurora
xox

Phoebesnow
Posts: 451
Joined: Apr 2011

Welcome.

Angela_K
Posts: 374
Joined: Jan 2011

My port gave me no trouble and I hardly knew it was there. The scar is minimal and in my opinion, a beautiful badge of courage. :)

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