Hi, In Sept. 2017 I was diagnosed with ovarian cancer, high grade serous carcinoma 3C. I had surgery and completed 18 weeks of Carbo/taxol and weekly blood draws without a port (at my doctor’s suggestion). I have had a reoccurrence and am receiving Carbo/doxil once a month and a monthly blood draw still without a port. Inserting the IV is becoming more difficult and painful. I have requested a port and my doctor has agreed if I want it. I only have three more monthly chemos scheduled , maybe more if my CA125 doesn’t come into the normal range. Then I will begin a PARP with weekly blood draws for 3-6 months, then monthly blood draws. I will need to drive one hour to the hospital for the weekly blood draws through the port because it needs to be done by an RN. Blood draws through the port cannot be done by a technician at a local lab. Should I get the port considering I may have more than three chemo treatments left and possibly 3-6 months of weekly blood draws going to my nearest hospital one hour away?
Should I get a port?: Hi, In Sept. 201... - SHARE Ovarian Can...
Should I get a port?
Hi Christine, in my experience I am glad to have port put in. I received chemo before surgery,no port, my veins were very small. After surgery I had port put in for chemo again. It is great for bloodwork as well as Catscans. I have not had chemo for almost 2 years,but am now on Zejula for 2 years. I am glad to have port. It is a pain if you have to go to hospital,not too many RNs know how to access it. Everyone is different but I hope this helps. May I ask where you get chemo? My doctors have a lab and chemo in same place. Keep the faith.
Thank you for your reply. My oncologist in Newport Beach, CA. used to have his own chemo room, but he recently closed it and his patients go across the street to The hospital to receive chemo. Another reason I’m considering a port is a nurse navigator and chemo nurses have told me that Doxil is an irritant and can cause burns if it leaks from the vein because the IV has not been inserted properly. I had confidence in the chemo nurse at my oncologist’s office that I went to for 18 weeks. Now that I get various chemo nurses at the hospital I realize they have varying skill levels. I’m afraid of getting chemo through an IV into my veins now because of the toxicity of doxil and the varying skill levels of the nurses. The chemo nurses have told me a port is better for receiving the chemo. My doctor doesn’t seem to think a port is that important. How often are you getting blood draws on Zejula?
I started on Zejula in May 2018. Had bloodwork every week for a month or two,then every 2 weeks for a month or so,and now once a month for the last year. Talked my doc into 6 weeks for bloodwork and visit since Nov. They keep a close look on you in beginning to make sure your blood levels are good. So far I have been lucky with no real side effects, dry mouth, little tired but nothing major. I started on 300mg from the start. Some women on this site could only tolerate 200 or 100. Hope this helps.BTW, I have same OC since 2013.
Why in the world did your doctor tell you not to get a port?
Hi Christina
I have had my port now for almost 3 years. I drive about an hour to the hospital every week. I was diagnosed with stage 4B Ovarian/tubal cancer. There is not a chance that I could have gone through all the chemo I have had in the past 3 years without the port. The chemo clinic nurses and all related personnel are awesome. I have only good to say about having the port. Since you are having problems with your veins take it into consideration if a port would be good for you at this time. I will say a prayer for you.
Bev 21
Thank you for your replies. When I started my first round of chemo after my surgery two years ago, my doctor said my surgery was very long and he didn’t want me to have another surgery to insert the port. He told me I had good veins and to try intravenous chemo first. I managed the 18 weeks and all the blood draws. This time it has not been easy, so I asked again. The surgery for a super port is scheduled for Monday and all of you have confirmed that getting a port is the right decision . I too will not be as anxious walking in to get the chemo treatment. And I need to accept that an hour drive for the blood draw is something I need to do. The hospital offers daily classes in exercise, nutrition, art, spirituality , so I will plan to take a class on days when I need to have my blood drawn. I will be doing something special for myself. Thank you for your encouragement and prayers, ladies.
Good decision. You won’t be sorry you decided to get the port. The surgery is a minor procedure compared to your other surgery. My port bugs me now and then if I bump it but I have no intention of having it out. It’s my safety net in case I ever need chemo again. I still get blood draws every 3 months plus CT with contrast, for which they use the port.
I’m really glad that I got the port. The surgeon who put it in, my oncologist’s associate, told me before the surgery that it is a safeguard against chemo leaking from the vein or a mistake happening while inserting the port. She gave several reasons validating having the port. I wish I had been told this early on when I went through my first round of chemo. How long have you been off chemo? Are you on anything maintenance ?
To catch 910, oops I meant the surgeon told me the port is a safeguard against a mistake being made while inserting the IV
I finished chemo in October, 2018. Then I began the Athena clinical trial with two drugs.
Although it is a blind trial, it seems likely I was getting at least one if not both drugs (versus placebos) based on my side effects. The two drugs were Rucaparib and Nivolumab. After 8 months I was taken out of the trial due to very severe, worsening side effects. I had intractable severe nausea and lost quite a bit of weight. I was so weak I was having episodes of falling. I was too sick to drive or really do much of anything, even in my own house.
I eventually began to improve once they discovered the right combo of anti-nausea meds. Compazine and Zofran were not working, but I began to get better once I was prescribed Phenergan, and of course most importantly as the trial drugs gradually got out of my system. It took longer than I thought it would!
I have regained most of the weight I lost and am able to function normally now. My only lasting issue is having loose stools, for which I am now seeing a GI doc. (I hope to be able to get a colonoscopy soon, but cardiac clearance is still pending.)
I am on no meds currently for my cancer. Due to the trial protocol, however, I am being seen by the oncologist and having labs and CTs every 3 months.
Good luck in your new normal. It seems this diagnosis has as many stories as there are patients, and everyone has a slightly different experience. I'm trying my best to enjoy every day as I know things can change on a dime.
I’m so sorry you had such a hard time with the meds in that clinical trial . Your attitude is wonderful. Yes, we always need to live each day to the fullest!
christine2 my experience has been the same as Hidden . Nothing but positive. I've had a port from the start (since January 2016). I've NEVER had an issue with it. I'm at 4 years now and in the 4 years the longest I have gone w/o a blood draw is 8 weeks. I can't imagine a vein being accessed every 6 weeks. They give you lidocaine gel to apply to the port so the needle going in isn't painful. Even when I forget to put it on, the pain is no worse than them accessing a vein. I had a recurrence in 2018 and was thankful I still had my port. It was one of the oncology nurses who do the blood draws who advised me to keep it in because of how often they would be doing blood work. I'm glad I listened to her. They can also use your port if you do CT scans with contrast. The main thing to know about a port is that it needs to be flushed with Heparin to keep the blood in the line from clotting. If you go 8 weeks between blood draws you have to go get it flushed at about 6 weeks max. Do it. You won't regret it.
Thank you, you have really helped me to see the value of a port. I’m glad it has made your life so much easier!
Concur the port is the way to go. Sooo much easier
Yes! My port has made such a difference- no longer quaking in fear as walking into hospital. Just make sure you get a power port or equivalent so that contrast dye can be put through it.
Hi Christine2,
I’d like to share my experience with my port for you to think about. I’ve had my port in for 5 years, used it for 4 of those years for chemo only, due to 3 reoccurring cancer. Highly recommended it for taking chemo but my port has never been used for blood draw because it never would let nurses draw blood. It would flush great for chemo but not to draw blood. I wished it would but it doesn’t. I am on maintenance Rubraca and still have to get monthly lab.
God Bless
Patsy
Thank you for telling me this . Do you know why blood cannot be drawn through it? Is it a malfunction? Is it a Power Port?
I had one instance when the nurse couldn’t draw back from the power port. She simply put me in Trendelenburg position (head lower than feet) and the presumed little flap-shaped clot coated opened up and they could then draw blood. Nurses are very resourceful.
Hello Catcher910, thanks for the info I’ll let my chemo nurses know this. I’m do for a port flush soon. Again thank you.
Best to you always
Patsy
Hi Christine, yes it is a Power Port. I’ve always been okay going to lab for blood draw, the port worked wonderful for chemo and it still flushes good so we left alone instead of another surgery to change port. The chemo and lab nurses feel it’s deep and laying up against something. Least that’s what they told me. Hope this helps. If I had it to do all over again I would still want a port it’s so much better.
Best to you! Patsy
I’m sorry you had to experience this. How is the Rubraca working for you? How long have you been on it? Are you having side effects?
Hello again Christine2, I’ve been on Rubraca 16 months now, so far it’s keeping my CA125 at 4.0 sometimes it will go to 6.0 but then back to 4. I have no complaints at all as to side affects. I do get tired some but when my body says lay down I do. If I miss a meal or when it gets time to eat I can tell because I get a little sick feeling in stomach, but soon as I eat it’s gone. I’m taking 1200 mg daily. Keep me updated on your decision as to get port. Have you tested positive for Brac mutated gene?
I’m going ahead tomorrow with the surgery for the port! I will have the port in time for my next chemo on Thursday (: Yes, I am BRCA 1 positive. I understand some PARPs work better than others for BRCA. Is Rubraca one of them? Are you BRCA positive? It sounds like you are responding very well to it and with no side effects.
By the way, my name is Patsy too.
Thinking of you this morning, pray things going well with port surgery.
Patsy from TN.
Yesterday’s surgery was a breeze. I don’t have any pain or discomfort, just a little tired probably from the anesthetic. I’m looking forward to having the port put to use at Thursday’s chemo.
Thank you for your prayers. God is good.
Patsy
Wonderful, now when you use the port they will ask if you want the numbing spray. I don’t use it just relax take a deep breath and it’s over. Nothing to it.
Praying your chemo goes well. Yes God is good and always with us!!
Patsy
Oh, I didn't know about a numbing spray. I received a pamphlet with my port, it said the first time it’s used might be a little more painful. I wonder if I should use a numbing spray the first time? My doctor told me the steri strips that are covering it from the surgery may still be on when I go to chemo Because only three days will have passed. She said they can keep the Steri-Strips on and just stick the needle through the strips. ..
Ask your chemo nurses about it, I call it numbing because it does numb it but it like a freeze spray. I used it my first only I wasn’t fond of it but some ladies prefer the spray. You should at least try both ways to see what you like.
Good luck 😊
Ok, I’ll inquire about the numbing spray. Why didn’t you like it?
It was to cold and uncomfortable. So the one little stick feels much better. But that’s me.
Good luck
Put lidocaine gel on your port about an hour before they access it. You don't or barely feel needle going in. They should have given you a script for the gel.
This is all new to me! Who gave you the script for the gel?
Yes I am Brac 2 positive, I was cancer free from breast cancer for 28 years and then it hit me in 2014 with cancer tumors in both fallopian tubs that’s when I found out I was Brac positive. It has came back twice since 2014 once in liver and once in spleen. After finishing chemos again Dr. immediately started me on Rubraca. And now 16 months free, thank the Lord. I wish you the best Patsy, You will love the port. Hang in there we are strong ladies and you have great support with this group. My name is Patricia but family always called me Patsy. Small world I live in TN.
God Bless
Patsy, you have really been through it from what I just read. I am so sorry you have had to experience both cancers caused by being BRCA positive. Mine is only Ovarian and I do MRI/mamo alternating every 6 months. No issues there. I too am a believer and it's only been many prayers by many people and my faith that has sustained me through this unknown territory. I seems you have a strong faith as well! God bless you and I pray for continued healing for you! Liz
Hello Liz, thank you for your kind words you put a smile on my face and in my heart. I’m sorry we are in this group but so thankful this group is here. I too would not of made it through this if not for the Lord giving me the peace knowing He is by my side plus Prayers from family and friends. He still has us here for a reason.
I go once a month now for blood draw and check up changed to 6months now. Then CT/Cat scan yearly. I had blood draw today waiting results, but as always God gives me peace with that too!!
God Bless you and your family and continued healing for you too.
Patsy
Hello Lobster2, I too am BRCA positive. I have ovarian cancer and do alternating MRI/mammo every six months. Is it possible to use the port for MRI with contrast while lying face down for the MRI? I too am a believer and agree with you and Patsy from TN. That our faith has carried us through this. God bless, Patsy from CA.
It's always great to connect with other Christians. I don't know what people do w/o a faith to sustain them. It's what got me through the hard days when I was first diagnosed in 2015 and chemo in 2016 and when I was told the cancer was back in 2013. christine2 for my port numbing I have a lidocaine gel I rub on it an hour before access. I saw some other replies of a numbing spray (I've never used that). My oncologist prescribed the lidocaine gel. They have used my port for all my CT with contrast (last time I had a CT they said I no longer have to drink that stuff before-hand) and I believe they used it with my breast MRI though I'm not 100% sure of that. How did 1st use of your port go?
Thanks for the info. My first port experience was wonderful . The chemo nurse removed the steri-strips from port surgery three days pryor even though the surgeon said they would access the port going through the strips. I hope it was ok to do that. Then she sprayed it with a cold numbing spray and inserted the needle. I didn’t feel a thing. After chemo she applied new steri strips. I learned I can go an hour early for my next appointment to have my blood test taken through the port. It will take an hour to process the results, but it will save me a day of driving an hour both directions to have the blood test taken through the port. God is good. The answer to this problem was there all along, it just needed to be revealed.
I don’t think I answered one of your questions. You asked if Rubraca was one of the PARPS for Brac positive. It’s my understanding that Rubraca is for patients that are positive for Brac 1 or Brac 2.
I have a port and I love it. I tried the chemo without it for the first two infusions, but quickly realized that the soreness in my arms was more of a problem than anything. I'm so surprised that your doctor recommended going without it. I am also on a PARP-inhibitor and have to do weekly blood draws. I get my blood draws locally in the usual way. I would also have to travel some distance to get the blood draw using the port, but there is no need. You can still do it with the IV. But I'm keeping my port just in case. I also had a recurrence 6 years after my first diagnosis and I just feel that it is worth being prepared.
Any lab should be able to do a CA 125. Look around. This is too stressful for you. I had the same experience and an on Zejula forever. My CA125 is still elevated but CT is clean. My doc treats for CT not numbers. This whole business is stressful. Do whatever it take to stay calm.
Yes, it is stressful receiving chemo because of a high CA125 with a clear CT scan. How high is your CA125? How long have you been on Zejula and has it kept your CA125 stable?
Well, if you are finding IV therapy painful then you can get port. Yes, it is quite tiring to travel on a weekly basis but I think better than coping up with more pain during IV therapy.
True!
Aloha Christine! My power port has been great! I can swim and do anything with it. It's hardly noticeable not even a scar, just a small lump. I've had my port for almost 6 years. I'm on my third reoccurrence. I've had to have blood draws sometimes as much as weekly due to low blood counts. Also, I have them access my port when I have scans. You go into the chemo clinic before your scan and they'll access it for you, that way the scan people don't have to find a vein. The port is so much more less stressful than trying to find veins especially when you don't get super experienced people. Wishing you the best!
Hi Canoer, It’s great to hear that your port has worked out so well for you . I was wondering about being able to swim with it because we have a pool. Thank you also for the tip about going into the clinic before a scan to have them access it. A bad experience a couple weeks ago by an inexperienced CT technician is what prompted me to get the port. I don’t quite understand, the chemo clinic inserts something into the port then the CT dept. follows up with what? Can you please explain?
I had 18 rounds of chemo in 14 weeks. Since I had to have fluid drained from a lymphocele that finally 4 yrs later shrunk. But IV for cat scans etc. I didn't do a port for blood the first time but if I have to do chemo again I will do a port. Now they have trouble hitting my veins, can be painful at times. Best wishes whatever you choose. Liz
I decided on the port and had the surgery Monday . My first chemo using the port was yesterday, it was so easy. I regret that I didn’t have it when I had eighteen weeks of chemo two years ago . I should have questioned the doctor’s comment that I didn’t need it at that time. Yesterday’s chemo nurse confirmed what others told me that doxil can cause burns if it leaks and it should only be delivered through a port. Having the port for yesterday’s treatment relieved a lot of anxiety.
Wonderful, that's my plan for if my chemo returns. I wish you all the best. Liz
Hello to everyone who replied to my question a month ago, “Should I get a port?” Here is an update. I had the port implanted Feb. 10,2020. It was a simple procedure and I had a good experience receiving chemo through the port 3 days later. Two and a half weeks later my port got infected and four weeks after it was implanted the port was removed. This was three days ago. I spent two days in the hospital receiving intravenous antibiotics. I’m home now taking antibiotics until the infection in gone. Chemo that was scheduled for tomorrow is cancelled until the infection is cleared up. I will need to finish the chemo treatments Intravenously. I am not going to have another port put in for fear that it will get infected also. I don’t think what happened to me is an experience that most people have. I’m saddened that this occurred.
I am so sorry - you have been really unlucky. Good luck with the rest of the treatment.
I didn't get a port because I work with horses Dr suggested not too. I will really have to think about it if cancer returns. It looks so much easier I've been a hard stick since messing up my veins. Sorry this happened, thanks for letting us know. Liz
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