What is a VAD or Porta Cath?

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

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I have had my Port for going on 4 1/2 years ow and absolutely and very happy I had one put in. They have always had a hard time trying to start an IV on me, so my Oncologist felt a Port was going to be much-needed and I totally agreed.

I'm currently off treatment and doing well, so I could have it removed, but I do not want to, for fear that will be a jinx and IF I had it out, then I'd end up with progression and then need to have another port installed. NO thanks, I'l happily keep this one and it's still working great. They use it for all my lab draws, for the contrast for scans and most recently had MOHS surgery and Reconstruction and they used it during the time I was in the OR (Anesthesia and IV Fluids etc.). They have now trained the IV Therapy nurses to access ports too which I think is wonderful. . Prior to that the only ones who would touch it, were the Oncology Nurses.

I'm very happy they are using it more and use it any time I can. If it's not accessed, I do go in for Port Flushes every six weeks. To me a port is a blessing and I can not imagine going through treatment without one.

Lisa

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I have had my Port for going on 4 1/2 years ow and absolutely and very happy I had one put in. They have always had a hard time trying to start an IV on me, so my Oncologist felt a Port was going to be much-needed and I totally agreed.

I'm currently off treatment and doing well, so I could have it removed, but I do not want to, for fear that will be a jinx and IF I had it out, then I'd end up with progression and then need to have another port installed. NO thanks, I'l happily keep this one and it's still working great. They use it for all my lab draws, for the contrast for scans and most recently had MOHS surgery and Reconstruction and they used it during the time I was in the OR (Anesthesia and IV Fluids etc.). They have now trained the IV Therapy nurses to access ports too which I think is wonderful. . Prior to that the only ones who would touch it, were the Oncology Nurses.

I'm very happy they are using it more and use it any time I can. If it's not accessed, I do go in for Port Flushes every six weeks. To me a port is a blessing and I can not imagine going through treatment without one.

Lisa

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Thanks for sharing. Great info. Totally get the jinx thing 😏

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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

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Congratulations Lisa! You really went through "the mill" with all your cancer spreading and brain tumor to boot! Your attitude is definitely one of a survivor and I wish you the best for the next decade or more. I am 10 years stage 4 met melanoma where a tumor was removed along with 1/5 of my lungs . Went through 5 years of up s and down and more biopsies and then went NED to Stable and back to NED. Keep fighting , it is worth it all. Marilyn

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Marilyn,
Thank you! I had an amazing oncologist who I absolutely adored and it was her treatment plan that got me where I am today. The sad part is that she no longer practices here, but the good news for Dana-Farber patients is that she's now is on staff at the Dana-Farber South Shore Hospital and I would go to her in a heartbeat if it wasn't just way too far away. I still miss her very much and I'm very thankful for everything she did for me. The day she told me she the wonderful news about her new career opportunity we both cried, but I was also very happy for her to move forward in her career and so thankful she had been there when I needed someone like her the very most.

I also went to Dana-Farber in Boston for second opinions but then chose to have my treatment close to home, because making a commute into Boston was just too taxing and challenging especially during the winter.

I hope that we will all continue to do well and can beat this miserable illness.

I also just went through MOHS surgery for basal cell skin cancer on my upper lip and lip and then had to have reconstruction which thankfully turned out pretty well. I'm still healing, but considering they had to take almost half my upper lip, I'm shocked at how it's looking. Better than I expected and it's only been five weeks now. Hopefully that is the last of dealing with cancer for me for a while.

I think it's very important to try to keep a very upbeat and positive attitude and to really be determined to beat this disease.

Best wishes for continued success....
Lisa

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