What is a VAD or Porta Cath?

Lisa ...Yeah I totally love getting chemo and blood work thru my single port ...the only thing I cannot get is ct scan fluid. AND...no one started using the port for blood UNTIL I got to the Dana Farber ...that was October 2018 ...so from Feb 201seventeen to Sept 2018 I had to have blood sticks ...now MGH does blood and chemo with the port.
If a doc recommended not to do it however I would definitely go with doc's advice.
S

Luckily at my hospital they have it set up so that when I go in for a CT Scan, I start in Oncology and the nurses access the port, so that it's ready. Then when it's time for the scan, they come down to Radiology and hook up the "Contrast" to my port. (The CT Scan Tech, can not touch it). They then de-access me right after the scan is over.

THis latest surgery was the first time EVER that it was used for anything other them chemo and/or by anyone other than an Oncology Nurse. It's new "here" for them to be training the IV Therapy nurses to access ports too. I was very happy when I was in Pre Op and they told me they could use my port. I'll happily have them use my port any day over trying to start an IV.

IF any of my docs had advised against a port I clearly would not have had one, but that was never the case, they all actually recommended it. I have Stage IV cancer and that too may be why they think it's best since my cancer is not curable and i'll be in some form of treatment forever.

Lisa!
Hey girl.
I like this plan. Hooking you up by onc nurse and then doing the CT scan thing. I am going to look into this.
You said you are stage 4 and incurable and in treatment forever ... TODAY ONLY kid....things they are a changin'...
For all of us it can all change tomorrow or next week or next month so we have to hang tough.
Do you care to share where your cancer was found?
I had ..I am NED... it on my liver surface, colon surface, peritoneum, ovary, fallopian tube, uterus, and a 12 x seven tumor was removed...could have been more in Oct 2016 bc surgery was not till Feb seventeen.
I never thought I would be NED and I am and have been for quite some time.
I also had nineteen lymph nodes removed and they were all cancer free....wheeee.
I just wonder how they go from 3c to 4.
Later gator.
x
S
TEAL strong

Hi Sandra
Thanks for the kind words and of course the inspiration. I definitely feel that there is a chance that I can beat this thing and I am definitely never going to give up I have said that since day one even though we all know that at this point in time we do not have a cure for stage 4 although I do think we are getting closer and closer.

I cancel is actually found quite accidentally after I had a sudden onset of what I thought was severe vertigo. It came on in a matter of two days just four weeks after I had had hip replacement surgery. Because I had had lab work and a chest x-ray for all of that I never in a million years would have dreamed I'd find out 4 weeks later I had stage 4 lung cancer. After the second day of the vertigo like symptoms I went to see my primary care doctor and as soon as he did the neurological exam I clearly knew I was failing so he sent me directly to the hospital for an urgent head CT and they found a brain tumor. It was a major shock and within an hour I was losing my voice in the use of my right arm and my right hand. I was immediately transferred to a larger sister hospital's neurological unit and spent the next week they're having several tests. By the end of that time it had been determined that the brain tumor was a met from stage 4 lung cancer. They also found a pulmonary embolism despite the fact that I never had any type of chest pain, no cough no discomfort no shortness of breath and of course those clear chest x-rays just one month before.

I have had gamma knife for the brain met and then moved on to chemo, which was carbo and alimta and was on that for several weeks and actually reached NEDI that first summer. Unfortunately by October a rroutine chest scan found that the main tumor had returned and it was very aggressive so they quickly sent me for 10 rounds of radiation while waiting for insurance to approve immunotherapy which by then had just been FDA-approved. I went on opdivo in December of 2015 and was on it for the next nine months and it worked amazingly well. I did have side effects and ultimately develop pneumonitis and had to stop it but by then the tumor was gone and has been ever since. I've now been off treatment for over three and a half years and continue to be stable with no signs of any new cancer. I feel very lucky and hope to see you this way a very long time. I do have the KRAS
mutation and hope that something will come soon for that.

Wishing you all the very best

LISA -
Holly Maccaroni ...you are the luckiest girl ever...and SO BRAVE.
What a story...what a treatment...what a miracle that you are NED and have been for several years.
Thank you for writing ... I think somehow I got to you from ovarian cancer... I did not hear you mention ovarian at all...
You are an INSPIRATION FOR ANY PERSON with cancer.
TEAL strong
Sandra

Lisa, you have a great system for accessing your port. I had nothing but trouble when getting a CT because the nurses at the local hospital were not properly trained and kept saying my port was not working and then making me get the CT fluid through a vein which they had trouble accessing also. Pure incompetence, So I have to have my scans on a Tuesday when my oncologists nurse is here and she accesses the port and then I go to the scan area. She just rolls her eyes when I tell her about my ordeals with the CT techs. The last time I went in the male tech was making eyes at one of the nurses that came in and he forgot to close off something on the rubber tubing and when the scan started all the fluid went all over me, ran down my back and into my hair. The stuff is similar to super glue. I started screaming and they shut down the machine. Then they said :Oh we have to check with the head radiologist to see if we have to repeat this." I said, Seeing this went on me and not in me I"m sure you do. So from now on I am going to another hospital for my scans and when I tell my oncologist about this I'm sure he will make some calls to the CT department. I've had my port for 5 years and had no issues. The only thing I wish I would have had it put on my left side instead of right side.

I do feel very fortunate that they do have the oncology nurses work with CT directly now. It wasn't always this way in in the first year or so I did have to go and have them start an IV which seems silly considering I had a port. That's when I began asking more and more questions about it and one day I asked one of the oncology nurses if I could just go up there first have them access to my poor and then go to CT and they said yeah let's talk about this and soon after that it began to happen. I also have my care in a very small community hospital so there is more flexibility than it would be in a very large center and I'm sure that makes a difference to a degree.

I also would only want my port accessed by someone who is trained and who is very good at doing it because we all know it is a high risk of infection if it's not done properly. and I certainly don't want to end up with an infected pore that I need to have removed.

I hope over time they will continue to train more nursing staff to access ports because there certainly are many of us that have them and since we do have them they should be able to be used in our care as much as possible.

Hopefully you won't have any further bad experiences.

Hey Charles,

I have a port-a-cath by recommendation of my gyn/oncologist. I am so glad I had one put in! I am what they call a hard stick, and it has come in very handy with chemo and blood tests. I even slept during the entire procedure of having it put in and have never had any problems with it.

If anyone I know ever mentions being diagnosed with cancer and will be going through chemo I will tell them to ask their doctor about getting a port put in if the doctor doesn't mention it.

This is such an informative conversation! Thanks for sharing the details... If nurses had trouble accessing my veins more often I would probably be asking for a port! During frontline, there was just one nurse in the chemo room who was terrible at it, and after patiently dealing with her once, I decided that I never would let her try to stick me again. She clearly hated doing it, and she was panicky. Next time she was assigned to me, I asked her very quietly and warmly if so-and-so could perform the stick and she said okay. I think she was relieved... Another nurse who had just transferred from another department to oncology was out of practice and messed it up the first time, so when she was assigned to me weeks later, I asked her if she thought it would be a good idea to have someone else do the stick. She got a very determined look on her face and said no, she could do it. And she did it perfectly. So I guess she just needed practice. I appreciated her attitude. So, I just didn’t want to leave anyone with the feeling that there were no bumps in the road. These chemo sticks were generally in the forearm, not an easy place, because I needed to ice my hands. Routine blood draws from the elbow that were done by the phlebotomists were never a problem, but it was a big hospital with a bunch of people (Phlebotomists) who just do blood draws all day long every day. (During one CT stick, the nurse seemed nervous, but she got it the first time.)

I have several friends who are nurses and (even before I had cancer), they knew that whenever I needed an IV, (for surgery etc) it was always difficult and I would suffer with multiple sticks until someone would finally get it in. It was no fun and I'd end up with black and blues all over my arm/hand. They advised me to always "warn" everyone that I'm a "difficult IV" and to always ask for a nurse from "IV Therapy" to do my IV's. That information was so helpful to me and I always tell them now. Of course, I have a Port now, so no need for many IV's, but just know who to ask can be beneficial. I would HOPE that anyone working in Oncology would be "very well" trained in IV's as much so as an IV Therapy nurse. We are doing through enough in this battle, no need to have to deal with multiple needle sticks and bruising etc., as well as the potential for infection etc. When in doubt, speak up and ask for someone who does IV's all day long!!!
Lisa