Hello all, would you please help me with your pros and cons of IV versus Venous Port

Susiemaccancer

Hello all, first of all, I want to thank those of you who have helped me so far on this frightening experience of endometrial cancer. It is very very comforting and extremely helpful hearing other's stories regarding their experiences. You all have showed great courage faced with this disease.

I begin my 6x Chemo sessions next week. The option was presented to have the drugs administered via IV or via a Venous Port. I have read today that the Taxol is very caustic and injurious to veins and skin and now I'm worried that my veins will collapse from the toxicity of that drug. I am 71years old, somewhat healthy, and haven't abused my veins other than an annual blood draw.

As you well know, this experience is one worry after the other after the other and I find the best responses from this focus group.

Does anyone have any first hand knowledge or opinion on which method (IV or Venous Port) they prefer or which to avoid, and for what reason/s. I'm finding that sometimes there isn't one clear path. I thank you in advance for your help again. Regards, Susie

anne609

After doing quite a bit of reading, I opted for having a port placed to avoid trashing my veins with Taxol. The time it takes for the pre-meds, Taxol and Carboplatin also means that the veins would be subjected to the toxicity over several hours. And while the nurses are very experienced in placing an iv, there is always the risk that there could be slippage and that some of the drug would go into the surrounding tissue. I can't say that having the port is great — it took mine longer to heal that predicted and it creates a lump and interferes with my preferred bra — but I am definitely glad I did it. And I'm a few years senior to you and have recently completed my sixth round of chemo. I plan to keep the port for at least the next several months and will use it for immunotherapy infusions to keep it viable. Good luck with your chemo and with your port/no port decision.

Susiemaccancer

Hello Anne609, I am very happy that you have completed your sixth round of chemo: congratulations and what an achievement! To have that in the rear view mirror must give you a boost of confidence for sure!

Thank you for your comments and your "I am definitely glad I did" statement. They are very helpful to me in my decision making. I have witnessed first hand with family members when blood draws don't go well and hematomas form under the skin. I realize the Oncology nurses are pros, BUT 6x chemos means at least 12 pricks that have to go flawlessly. I wished that I had thought of asking sooner because my first chemo is Tuesday, the 16th and I will not have adequate time to have the port placed by then. I will shoot for my second session for the port, fingers crossed. Anne609, thank you for replying to me and I wish you all the very best in the future.

Regards, Susie

anne609

https://csn.cancer.org/discussion/comment/1724500#Comment_1724500

Hello Susie - Yes, I am pleased that I completed the 6 rounds and had a "clean" CT Scan. But I know that this is a very persistent form of cancer so am cautiously optimistic. I will say that the interventional radiologist who placed the port clearly stated that it was ready for immediate use. So if your oncologist can get you an appointment before your next round, the port would definitely be ready for use.

I did have an iv used this week for the first round of immunotherapy and it was interesting because the iv was placed in my forearm. When asked, the nurse explained that it is standard placement for chemo because it doesn't move (unlike the crook of the arm or the back of the hand) and the goal is to make sure there is no movement of the needle once placed.

Susie, I wish you the best as you start your chemo journey and I'm sure the nurse will applaud your decision to have a port placed. Best, Anne

NoTimeForCancer

I had 6 chemos, with radiation in between the first and last three. I did not get a port and I remember after the first chemo saying to the nurse, "we'll have to remember that (location) for the next one!" and she shook her head no, which I didn't understand. Of course I know now that chemo makes your veins hard, and for #3 they had to call the IV Team. That really sucked.

When I told my doc about the IV Team we talked about a port, but I was lucky the break with my radiation probably helped it recover some and I was able to get through the last 3 without needing the IV Team again.

I would probably re-evaluate getting a port, and have that conversation with any friend or family who asked.

Susiemaccancer

Morning NoTimeForCancer,

Thank you for your reply and experience.

I am very glad that you indicate that your Chemo visits are behind you. What a great relief that must be! Congratulations!

My husband keeps reminding me to plan for the long term and that does help shift the ongoing negative bias in my head. You all have gone through this challenge, and have come out on the other side, and I hope to join the ranks of these many courageous women.

After Anne609's conversation, I quickly messaged my Onc office and asked for a port. I anxiously await their reply. Knowing that your veins become hardened was not explained to me during the Chemo teaching session. I just hope that the artery/vein that the port goes into doesn't become hardened and unusable. But, I have not heard of that happening.

Never having personally gone through this challenge (been pretty lucky in my 71 yrs to have stayed healthy, no meds for anything), I find that this journey involves one challenge after the other and the decisions don't seem to get any easier and there's no clear cut approach. And everyone's body reacts differently.

BUT, One thing that makes this journey easier is the willingness and thoughtfulness of other women who have been here and are gracious enough to share their story with me. It absolutely lightens my heart! Phew!

All the best for a bright future, NoTimeForCancer! Let's look forward to a brilliant show of Autumn colors,

Regards, Susie

NoTimeForCancer

Susie,

It is overwhelming when presented with it all. Your husbands outlook is spot on. This is a journey and it means steps all along the way.

Good luck on Tuesday. I promise you, you will surprise yourself in this journey.

bibliophile

It looks like you have already formed an opinion, but I just wanted to add my voice to the pro-port side. My oncology nurse kindly and openly discussed all the pros and cons of both, but said that after seeing so many patients and having seen both options in practice, did encourage me to get a port. I did so and have not regretted it. I have bad veins that are hard to find anyway and the port just makes it such a quick and easy experience each time. They can also use it for blood draws, which have historically been difficult and painful for me. It looks like your first treatment is supposed to be today. Wishing you the best possible outcomes!

Susiemaccancer

Dear bibliophile

Once again, I am overwhelmed by the replies and so comforted by them. Thank you☺️

Yes today, first Chemo, so just waiting to start the First Rodeo.

Thank you for your thoughts on this day. And most of all thank you for your thoughtful guidance.

Having this web lifeline, was something I didn't know I needed, until I really needed it!!

Thank you very much and enjoy the rest of your day! All the best, Susie

Susiemaccancer

Ps I initially noticed your sign on...any light hearted book recommendations that will uplift me during the Infusion times? Thank you

bibliophile

What kind of books do you most like? I love mysteries, science fiction, and non-fiction, but I read lots of different genres. Right now I have been reading Josephine Tey. She is a "tea cozy" mystery writer from the '40s in the vein of Agatha Christie. I also read a great autobiography by Kevin Mitnick who was at one time on the FBI's most wanted list as a hacker (but he didn't do it for criminal purposes, just curiousity). It was an interesting, easy read. Hoping things go well for you today! Would love to hear from you again! Feel free to private message as well if you just want to talk. 😊

Forherself

https://csn.cancer.org/discussion/comment/1724531#Comment_1724531

That is a good question. Enchanted April, Pride and Prejudice, A series by Mary Stewart about King Arthur and Merlin, The Enchanted Cave. I did not have chemo so cannot comment on the port. Just mostly reading here women were glad they had one.

Susiemaccancer

https://csn.cancer.org/discussion/comment/1724501#Comment_1724501

https://csn.cancer.org/discussion/comment/1724499#Comment_1724499

Hello Anne609, thank you again for your feedback which I regard as a true indication of what we women are truly experiencing and not influenced by any medical staff (although my medical staff is very dedicated to women's health, and are trying their best with their available, but limited, "tools").

One question, please. You mentioned that you were following a path for immunotherapy? Your genetic testing revealed protein(s) that can be strengthened to improve your long-term healthy status? I am just curious and I hope this question isn't too prodding. I was tested, via OmniSeq Insight by Labcorp, for marker findings. Unfortunately POLE mut was not detected, which, I think, was the protein my gyno onc was looking for as a good sign. But, I believe that your markers are conducive to immunotherapy and I am hopeful that this will be helpful to you. Continued best wishes to you and thank you again for your guidance. Regards, Susie

Susiemaccancer

Hello bibliophile and Forherself,

It is amazing how you can bring a smile to my face this morning! Thank you for your reading recommendations.

I enjoy non-fiction, and love mysteries (love all Agatha Cristie, John le Carre). I will start with Josephine Tey and then work my way to Kevin Mitnick's book. I was getting tired/annoyed of stories about broken women who had to deal with horrible experiences before they prevailed at the end; "Girl on a Train", "Where the Crawdads" sing.

I look forward to your suggestions, thank you very much. And of course, best wishes for our collective, continued best life. Regards, Susie😊

anne609

https://csn.cancer.org/discussion/comment/1724556#Comment_1724556

https://csn.cancer.org/discussion/comment/1724556#Comment_1724556

Hi Susie

The immunotherapy I am on is Keytruda (pembrolizumab ) and I have been on it since my first chemo the end of April and will be on it alone (assuming no major side effects and no recurrence) once every 6 weeks for two years. I do not have a mismatched gene protein (which would be noted as dMMR) and which is most responsive to Keytruda. Because one of my lymph nodes had a small area (less than a cm) of cancer, it was classified as Stage 3C which is deemed automatically eligible for immunotherapy therapy.

I did not have OmniSec testing.

I hope that round one of chemo went uneventfully for you. Best, Anne

Susiemaccancer

Hi again, Anne,

Thank you for your quick and informative reply. I see too, that my genomic variance would lend itself to Keytruda. But my gyno onc dismissed my questioning her about immunotherapy when we looked at my OmniSeq results together. Rather, she underscored only the chemotherapy route, as my option. I will discuss this immunotherapy more in detail with her now that I am on her chemotherapy plan and will request that she provide me with more insight as to her decision-making on this immunotherapy option.

Once again, thank you for sharing your story with me. My chemo went well, a little blip with the beginning of Taxol, but we caught it early (my nurse, Kat, is the most highly trained nurse that I have ever encountered, I lucked out the first time!). Anne, best wishes, hope you are experiencing these wonderful late summer days where you are. Best regards, Susie

anne609

https://csn.cancer.org/discussion/comment/1724562#Comment_1724562

You are most welcome. I will say that my doctor participated in the clinical trials for Keytruda (which was approved for use in treating endometrial cancer in 2024, I believe).

And I recall that the first use of Taxol is titrated to see if the patient will have any immediate side effects — I believe my blood pressure was taken every 15 minutes, for example. My experience was that all of the Infusion Center nurses were outstanding — very knowledgeable and happy to answer questions and extremely competent. Each of the nurses who was involved in my treatment had several years of nursing experience and made a decision to participate in the training and hours to qualify as an oncology or infusion nurse. I met several who had worked in oncology units and made the shift to infusion.

Glad your first round was uneventful and hope that your doctor understands that being dismissive is not a useful strategy. As you've seen, most patients have done/will do their research and expect to be taken seriously by their physicians! Best, Anne

anne609

Hi Susie

Just wondering if your doctor got you an appointment for port placement and if you've had any further discussion re immunotherapy. Hope all is going well with you. Best, Anne

Susiemaccancer

Hi Anne,

Thank you for the shout out! Good to hear from you! Hope all is well with you!

Yes, had my port placed on Monday: Ouch! So glad that it is now Thursday and I am recovering. No need to elaborate on the process but very glad to have that behind me. Now, as with you, looking forward to a less vein-tramatizing Infusion schedule.

10 days after my 1st chemo, I had a follow up with my gyn-onc where I prioritized the top 3 side effects (very low BP, very painful joint pain and neuropathy in legs/toes), and asked about my initial issue with the Paclitaxel. The Infusion staff, following my onc orders, did lower the volume (titrated) and apparently this allowed my infusion to continue. My gyno-onc mentioned that most "issues of rejection" come from the Cremophor EL that is used to administer the Paclitaxel. She mentioned that if I have repeat issues, that Abraxane (nab-paclitaxel) can be substituted. I cannot find any info as to which version of paclitaxel is most effective. Obviously, I would prefer the most effective drug, if I am going through this process. My next infusion is Tuesday so I will find out soon enough how I will respond.

I did not discuss the immunotherapy topic yet. It is on my agenda for my follow up after my 3rd infusion.

I do want to thank you again for helping me along this multi-stage journey. I have mentioned to my buds that it is because of your and others' contributions that I was able to feel remotely human through this.

Would you like to share any experiences with your Immunotherapy sessions? Hoping you are feeling well and taking in these wonderful early Autumn days. I always appreciated the change of seasons but maybe more so now. Cheers Anne, best regards, Susie

anne609

Hi Susie

I don't have any information on the nab paclitaxel vs the more traditional version — but your doctor should be able to opine (or you, of course, could consult with Dr. Google!). My doctor recommended taking one Claritin (active ingredient is Loratadine 10 mg) and 2 Extra Strength Tylenol once a day for bone pain and, oddly enough, it works. Apparently the bone pain is due to the release of histamines and the loratadine/acetaminophen combination is effective.

After my 3rd chemo round, my ANC (absolute neutrophil count) dropped so low that there was a question of continuing with round 4 on schedule. Fortunately, by the morning of the 4th round, it had recovered enough but after that I received an injection of Neulasta (which is a growth factor that stimulates the bone marrow to produce more neutrophils). It is also notorious for bone pain — but I took the Claritin/Tylenol combo the evening before and for the next 3 evenings and was just fine. You might ask your doctor about this.

With respect to the immunotherapy, I have had one round. The infusions are 6 weeks apart so will have the next in 2 1/2 weeks. I had no reactions — but I have been on the same immunotherapy at a lower dose all the way through chemo so really didn't expect any.

I am enjoying the weather — with just a few exceptions (generally the day of chemo), I walked at least 1.5 miles every day and am now walking closer to 2.5 so I very much appreciate the cooler temperatures.

Hope you continue to do well — and did your doc give you lidocaine cream to put on the port to numb it before your chemo round 2? Best regards, Anne

Susiemaccancer

Hi Anne,

Great to know about this joint pain relief solution: I have just messaged my onc team to ask them for their approval. Great to know that you found relief with it. I am somewhat hesitant to assault my kidneys with other drugs during the chemo but the pain is just so intense that I am willing to make this exception.

And thank you about your ANC drop information. I will discuss this with my Infusion nurse next Tuesday, just to get ahead of any obstacles that may delay my Infusion schedule. I truly appreciated your insight!! Thank you!!

I am thrilled that you are out there walking and increasing your range. I am so lucky to be very close to a wonderfully secluded, yet maintained, park area where I can walk as much or as little as I want. It is truly a blessing amidst all the things that I cannot control.

Anne, enjoy the weekend and once again, many thanks for your thoughtful guidance: it is priceless to me.

Regard, Susie