Intraperitoneal ports - failed twice before chemo

Alwayslearning

Hello all,
My initial chemo treatment plan for high grade serous carcinoma (Stage IIIC) post surgery was via the IP port with Paxlitaxol and Cisplatin. I had the first IP port inserted during my surgery in February. Sadly it had to be removed after two weeks as the catheter moved and was hitting my diaphragm causing intense side and neck pain. A new IP port was inserted by an Interventional Radiologist on March 21st. Sadly a week later it too had to be removed as the catheter was causing excruciating abdominal pain and I could hardly walk. My body clearly does not like foreign objects like IP ports.

I'm curious if anyone has had similar experiences with the IP ports? How was your chemo plan adjusted? We will learn our revised 'non-IP port' chemo treatment plan in a few weeks but I'm a bit anxious in the meantime knowing the preferred plan of attack is no longer viable.

Thanks. There's always so much to learn.

Strongwoman

HI @Alwayslearning and welcome to the forum.  I have not had an IP port but had one in the chest that behaved in a similar manner. My body as well does not like foreign objects in it.  I have since had mine removed.  
There are other options out there and am sure your team will discuss them with you.  Is a PICC line an option for receiving treatment for you?  Is there an oral medication that would do the same thing?  
I can empathize with the anxiety piece of it. I think that at times when things don't go "as planned" we can often feel pretty deflated and that our bodies are 'giving up' even though we aren't emotionally/mentally or physically ourselves.  It is like we are fighting with our own bodies and wanting to 'will' them into doing or acting the way we want them to.  It is frustrating at times and can cause feelings of sadness.  Fortunately, we are all unique and not text books. I say it that way because how boring would the world be if we were all wired the same way?  Be patient and kind to yourself.  I am positive there are options out there and they will reveal themselves soon to you and your team.  You will then know what to do and these feelings will go away.
I wish you the best on your journey and thank you for sharing your story with us.  

Alwayslearning

Hi @Strongwoman,
I'm not sure a PICC line will be an option as the IP port is designed to deliver the chemo meds directly into the abdominal area. I will learn of options, if any, at my next appointment in mid April. I do appreciate the advice to be patient and kind to myself. It's hard at times to not be in control however I know I am surrounded by a great healthcare team so know I need to put some trust and faith in them. The waiting game becomes the issue sometimes.
If anyone else out there has had any IP port challenges I'd still love to understand their journey.
Thank you for providing this forum!!!

Strongwoman

Yes, that is what the IP port is meant to do.  I am curious if they will offer something instead if that is not an option and they can't find a work around for you. 
Will be interesting to see what they do @Alwayslearning
Being patient and kind to ourselves is one of those things that takes time.  Taking time to pause is good.  Breathe.  You got this....it will all come together soon. 

leanfries

@Alwayslearning
Stage 3b high grade serous here! 
My IP port also failed & I still have it in. Was inserted with my surg in Aug/23. When it went to be accessed for treatment, it was rocking & rolling & there was a bit of swearing from the nurses. Thought they had it, chemo leaked all over me. Went home in a hospital gown with my clothes in a biohazard bag. 

Anyhoo, new treatment was bevacizumab maintenance chemo every 3 weeks at CancerCare. Keep at it until at least Aug of this year. I have no side effects from it tho there are some silent ones. It’s a short treatment time to receive it. There’s always something up their sleeves. Don’t fret! Keep thinking positive & hugs to you. 🩵

Leanne

Strongwoman

OMG @leanfries I can't imagine them saying "here are your clothes that are now a biohazard".  Did they tell you what to do with them once you returned home?  How did they clean it off of you?  Probably was not funny at the time but when you look back now what does it look like for you?  
Glad they had something else to offer you and that it is working for you.  Thank you for sharing your experience. 

leanfries

@Strongwoman
Omg!! It was so funny! You have to picture me with my bald head, a hospital Johnny, luckily my sweatpants were not touched so had those on, 2 large bandages on each arm as I didn’t have my Power Port then, hospital bracelets, & no bra walking down the street at the busiest hospital complex in MB. No one batted an eye 😆
I can’t remember now which drug it was but the nurses said it was lucky not the other one. While this all was going, someone had a reaction in another area so I was left to my own devices for awhile. I understand, I had a chemo reaction back on my 2nd treatment but I was LEAKING!! 😆😆😆
They just washed me up with soap & water. Didn’t tell me what to do with my clothes but I just washed them later by themselves. We live 2 hours away & after all that, I was hungry so we stopped for a bite. Luckily, my hubby had a hoodie in the car so I changed in the car out of the gown & went for supper hairless & braless. 

Since no IP chemo, I heard the next day from the oncology team that it would be the maintenance drug & I could have it at our own beautiful CC with all my favorite nurses. 

I’m possibly facing a recurrence already. Was just done reg chemo in Dec. I am having lower pelvic crampiness at times so waiting on CT in a few weeks, my CA125 is slowly climbing. Until then & a new plan, life goes on. Think positive & enjoy things. 🌻

Strongwoman

OMG that would have been both a sight and an experience. I am glad you can look back at it and laugh about it.  That is awesome @leanfries I am sorry to hear about the CA125 climbing and the recurrence.  It is hard when we hear those words.  I will look forward to hearing what your new plan is.  I know you will choose what is best for you and what you would like to do.  In the meantime, you are right.....Enjoy what we can!! 

Alwayslearning

@leanfries you have certainly had a journey!
Thank you for sharing. I hope they get you back on track with a new plan. Wishing you nothing but success. As you said, they always have something up their sleeves.

Strongwoman

@Alwayslearning I wanted to check in with you to see if you have been able to discuss how you will proceed with treatment re: IP Port and what they have offered due to what has occurred for you. Were you able to discover any info yourself to present to your team? How are you doing with it all, currently. Let us know when you have time and are ready to share.

Please take care and know you are not alone in this journey. 🤗

Alwayslearning

Hi @Strongwoman,

We are proceeding with I/V treatment using Paclitaxel & Carboplatin. My Gyn Oncologist said that there are many places that don't even offer the IP Port option. It was the option she initially wanted to use with me as I had so much disease in my abdomen pre surgery however, as the ports do not like my body, this was the option we proceeded with. She reassured me that this combination is still a positive route forward. Plus after my final chemo (6 treatments) I am a candidate for the PARB Inhibitor (Olaparib) due to my BRCA-2 gene mutation and will transition onto that.

Interesting, I have a friend who is an Gyn Oncologist in the U.S. and he confirmed that IP Port is not typically a treatment option offered in the USA.

I'm two infusions down now with 4 to go! Boy and I learning a lot along the way.

Thanks for following up.

leanfries

@Alwayslearning

YAY! Any forward motion in treatment is great. I had the pac/carb combo for 9 txs. It’s not bad. You won’t be doing cartwheels for the week after but that’s ok. I ended up with foot & hand neuropathy but it’s coming back slowly. Keep on going!! You’ll get there!! 🩵

Leanne

Strongwoman

Hi @Alwayslearning Thank you for letting us know how you are doing and how they thought it best to proceed with you. I know when I had my surgery, I had read about the IP chemo and it was not even offered to me at the time either and I was 3C at the time. Makes sense if your Oncologist is indicated it is not done at every hospital.

Thank goodness there is an alternative treatment for you as well that is to work as well as the IP. How is the chemo going this time? You mentioned you "have learned a lot along the way". If you are up to sharing how this is affecting you, we have some great listeners and they may have some tips/tricks for you along the way as well. It is interesting to see that you are almost at that half way mark which seems to be a pivotal moment when we are undergoing chemo. One can see that light at the tunnel coming but yet it still seems a little further away than we would like. Looks like there is a plan in play for after the chemo as well which is great.

Keep up the good work you are doing to manage through your treatments. We will all be looking forward to some updates along the way.

Take care.💕

Alwayslearning

Hi @Strongwoman My 2nd infusion was a long process (6.5 hours) however they've told me to expect that going forward because of two things; firstly, time needed to infuse me with pre-meds prior to the Pac/Carb combo, and secondly since I've reacted twice to the Pac (Tx2 was 90% better than Tx1 however I still got a small rash/itchiness on my upper abdominal area), so they have to start with a very slow drip and gradually increase it. Additionally if I do react, they have to stop the Pac altogether until the rash goes away (plus they amp me up with some additional antihistamines).

My top learnings so far:

1. Ice packs during chemo may help??? I'm using ice packs on my hands and feet. Whether it's myth or voodoo, my PN reaction post infusion was 85% less than Tx1 (note that they also decreased my Pac/Carb by 10% so that likely contributed too but who knows if the ice also helped), Additionally I started taking vitamin B12 which helps with supporting healthy nerve cells.
2. Ginger is my friend. I have ginger candies on hand everywhere I go now (Kerr makes one that we found at Walmart in the candy section and Gin Gins in chewy or hard candy format. I also have Ginger Gravol. They are very helpful with managing nausea during my days post chemo (my nausea seems to subside by day 6 post chemo). I do have nausea meds (Emends tripack, Ondansetron and Olanzapine). I try not to take the Olanzapine as it can cause constipation which is my forever enemy,
3. Senokot S is my BFF. I take 2 at night before bed the night before my chemo and then for the two nights following chemo. Then I decrease to 1 or 1.5 a night to help with constipation. It has been very helpful. Plus I've started drinking 3/4 cup of prune juice a day. I used to take 1 tablespoon of Metamucil daily and eat bran at breakfast but have been told to avoid that right now as there is a fine balance between fiber/bowel blockages/constipation. I did try Restoralax once and it made me super nauseous so I'm avoiding that going forward unless absolutely necessary,
4. Document your post chemo reactions. This may not be for everyone however I have kept track in my NOTES on my iPhone of how I'm feeling, side effects, how my bowels are moving, exercise I'm getting, energy level etc. This has been SUPER helpful. I was able to summarize my side effects from Tx1 to review with my Doctor (see attached picture). Plus it helped me to understand what to expect for future infusions.
5. Drink water. I try to drink no less than 6 cups a day plus any other liquids e.g., tea, milk. It helps with the bowels.

Sorry for the long response. If they help one other person, than that is fantastic. Of course I continue to learn along the way and love reading other people's posts. They help provide context in what can be a very scary time.

Strongwoman

@Alwayslearning Thank you for sharing your detailed journal and experience. I, too found ginger chews very helpful when I was undergoing chemo. Looks like you are resting when you should and figuring out your eating. Avoiding constipation is a key for many of us.

Looks like the ice packs are helping you and that is fantastic. Whether myth or truth, only way to find out is to try it yourself and see how it applies to you.

Take care of you and reach out to chat anytime or to update us. 💕

leanfries

@Alwayslearning

I am so interested in your journey as it definitely relates to mine in many ways.
I had 3 pac/carb txs pre-surg as I also have a neuroendocrine pancreatic tumour. At first they thought it was a metastasis but because they started my treatment so fast, there was no time to biopsy it to find out it’s not related. Anyhoo, it made my surgery easier. On my 2nd tx, I had a reaction to the paclitaxol. Oxygen dropped, BP spiked, red as a beet, drenched with sweat, etc. Got a shot of epi & we managed to finish the infusion very slowly. I spoke with the chemo allergist & we decided it was the carrier in the suspension that I reacted to so was switched to albumen-bound pac. Also called Paclitaxol NAB. No reaction, much shorter treatment time. I think it’s more expensive? so not regular line of tx. BUT again, there’s alternatives!!
I had terrible leg & joint aches the week after treatment. Luckily very little nausea. Very tired but insomnia. Constipation I still battle now & then. You can get neuropathy in your bowel too. The neuropathy would always come & go too. At the end it came & stayed unfortunately but that’s ok. My chemo brain is pretty wild some days. Do a lot of charades. 😆. I wish I had known about icing my hands & feet at the time. I’ve done some research on it & it seems positive.
You’re doing great! Keep going! 🩵

Leanne

Alwayslearning

Hi @leanfries - I've connected with someone else who had a similar Pac reaction to you. It must have been scary. Thanks for the info on Paclitaxel NAB. I've never heard of that however as you said, there are alternatives! See, I've learned once again! 😉

Sorry to hear you've had the leg & joint aches too and don't get me going on the constipation. Ugh. I wasn't aware of neuropathy in the bowel. Oh joy! You mentioned your neuropathy has stayed. Is in in your legs? I'm sorry you've had that as a lasting impact.

I appreciate you sharing and your positive words. Stay strong!