OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Intraperitoneal ports - failed twice before chemo
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.
Comments
-
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.
0 -
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!!!0 -
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. 0 -
@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. 🩵
Leanne0 -
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.0 -
@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. 🌻0 -
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!! 0
-
@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.0 -
@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. 🤗
0 -
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.
0 -
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
1 -
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.💕
0 -
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:
- 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.
- 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,
- 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,
- 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.
- 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.
0 -
@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. 💕
1 -
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
0 -
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!
1 -
Thought I would check in and see how treatment is going for you @Alwayslearning I think you would be getting near the end of your current treatment. That would be nice for you. Glad the icing of the hands and feet is working so well. Thanks for documenting and sharing that with us all. Hopeful that will help someone else down the road.
Yes, the side effects can be lasting for some. Sorry to hear that neuropathy in the bowels is one of them for you.
@leanfries Thanks for sharing your lasting effects so that others know it is normal for some as well. Hope your journey is going well too.
Take care
0 -
Hi @Strongwoman - thanks for checking in. My 3rd (of 6) infusions was supposed to be last Monday (May 5th) but was deferred to May 13th as my neutrophil count was way too low. It sucked because I felt great!!
I'm on track now for May 13th however I'll now be getting an injection of Lapelga as part of my treatment going forward. It helps to increase the growth of your white blood cells. You have to wait at least 24 hours after the infusion before you can have the injection. More learnings!!
I'll post mid next week on progress post this infusion.
0 -
@Alwayslearning Ugh the Lapelga shot……word to the wise…..my gf warned me and it helped. It takes a few days to kick in and then watch out! It felt like my joints were so sore from the inside out. Deep and achy for days and I felt tired and yicky for a couple of days. As long as you are prepared for it, meaning to expect it, you just have to ride it out. Don't plan to much when it hits because it isn't pleasant. I know they do a lot of good and help its the side effects that kick our butts!
I am glad you are feeling well despite the neutrophils being low. Good for you! Keep up the great work you are doing. I look forward to your next post.
Take care💖
0 -
Thank you @Strongwoman for the Lapelga pre-warning. I appreciate the heads up. I had read about the joint aches however hearing from someone with experience is always so much better than the medical warning documents. I'll add to my learning toolkit!
0 -
Your welcome! Warnings or what others have experienced can give us a head's up as to what may come or what to expect. All the while we can hope it won't be like that but if it is, to know it is normal and associate back to the shot is important especially since the side effects are delayed ones. Anything to help a fellow Teal Sister navigate their journey as easily as they can.
Keep us posted as to how things go for you in the coming weeks. 🤗
0 -
Hello @Strongwoman ….thought I'd provide an update on my journey. Thanks for the pre-warnings about Lapelga. I had the injection 2 days post my chemo and I felt the effects of it the day after. It wasn't as bad as expected however I definitely have the additional joint pains and they were interesting and different from chemo joint pain. I described it as feeling like a cartoon character who had the anvil dropped on them and flattened. That only happened for a few days thankfully. My chemo joint aches/pains typically arrive and stay for Day 4-6 post chemo. With the addition of the Lapelga shot, I experienced joint aches/pains, at times like jabs and spasms, mainly in my shoulders, neck and lower back/spine from Day 4-9 post chemo. All manageable by XS Tylenol. By Day 10 post chemo the pains dissipated and I only had the occasional minor joint ache. I was back in my gym doing light weights and treadmills walks by day 14 post chemo!
On a good news front, my CA-125 level has continued to drop from 216 pre-surgery, 67 post surgery, 23 post chemo 1 and 22 post chemo 2 to 19 post chemo 3. Yeah!!!
Also, with the addition of Dexamethasone (steroid), Benadryl, Famotidine and Hydrocortisone Sodium Succinate prior to starting my Paclitaxol & Carboplatin infusions on Tx#3 I experienced also NO peripheral neuropathy post chemo.
On Monday, I had chemo infusion 4 (of 6) so will self-administer the Lapelga shot tomorrow (Wednesday). Will track side effects again and see what happens this time round. Let's see if my learning of how to administer an injection work😁. Additionally, I received the same premeds prior to the infusion so hoping for no PN again.
0 -
@Alwayslearning Thank you for the update! I am thankful that it looks like the treatments are working and your CA 125 levels are dropping accordingly as well. That is such great news!
As for the Lapelga shots, I am thankful that you did not find them that bad and hope that is the case this next time around too. Good thing is, you know what to expect and that is the main thing. The exercise you are doing is probably helping a lot too. Good for you. Keep up the great work!
1 -
Hi @Strongwoman,
I've managed my way through three Lapelga injections and I've now completed my six chemo treatments, and I've rung the Bravery Bell. Yippee. I will get the results of my post chemo CT scan and bloodwork later this week. Hoping for nothing but positive news. Thank you for all your support!! I've learned so much and of course, continue to learn along the way.
Always Learning
1 -
OMG @Alwayslearning that is ah-mazing! You made it through to ringing the Bravery Bell!!! How did that feel the day you did that? Pretty surreal eh? Seems like you just started and then like it is lasting forever then blam it is done and over before we know it. So happy for you!
Awaiting test results later this week can be tough but the day will be here soon enough. How are you feeling about it all? I am hoping nothing but positive news for yourself as well. Your welcome and it has been my pleasure helping you through this part of your journey. I will continue to be here as you find out what the next parts are and anything that comes up with that for you. Whether that be emotional/mental issues or delayed physical symptoms. All good. All normal. What are you planning to fill your days now that some of them won't be filled with appts and then based on how one is feeling? Any ideas? I will give one tip, try to spread them out so you don't fatigue yourself and it is always nice to have some alone time too in there. To process all that is happened and where things are headed next. Time to find out what your new "norm" will be and how you will navigate it.
Thank you for the update and hope you continue to update as your results come in and are ready to share them with us.
Take care and glad you have found this site helpful in your own journey of healing. 💕
0 -
Hi @Strongwoman …ringing the bell felt great. My husband, son and daughter-in-law were there by my side which made it even more special. I'm starting to get myself back into an exercise routine albeit a bit slower than I'd like (my muscles are definitely not happy) but I'm taking it slowly. I try to walk 15-30 min daily however it's the loss of muscle toning that is the worst. I remind myself it's been 8 months so give myself patience with another 8 months to build myself back up.
I will post once I've had my oncologist meeting tomorrow. I do know that my next step is on to Lynparza (I have the BRCA-2 mutation), of which we will find out more tomorrow. I'm already set up with all the $$$ support for the medication. Now to get info on dosage, managing side effects, monitoring protocols etc. More to learn!!
Thanks for all your continued support,
Always learning
0 -
@Alwayslearning You are headed in the right direction and with the right attitude/timeline. It took time to get you where you are so expect that and maybe a little more to get you back to where you were. Be kind to yourself and keep up with the daily work. You will get there, albeit slowly but surely! The tone will come with time and persistence. So happy that you were able to share your "bell ringing" with your hubby, son and daughter-in-law. It would make that moment more special for all of you. Emotions included that go with ringing that bell. The finality of it or seeming like it is and the "I made it" feeling associated with it and all you went through to get there. I am sure they were elated to be able to share in your moment as well. 🤗
Glad you have the funding part out of the way and that won't be a stumbling block to commencing a new line of treatment. Finding out the rest can be a little overwhelming but take your time and absorb the info over the coming days. There is always more to learn with our journeys that I am finding. Little twists and turns or slight changes that makes one treatment that slightly different than someone else's. We all get there in the end and support each other along the way. Time passes and sometimes when we look back, we are surprised how fast it went. Some days they seem to be endless and not move quickly but thankfully those ones don't last long.
I will look forward to your update and where your journey is taking you next! Take care. 💕
1 -
Hi @Strongwoman,
All good news to report! My CT showed no evidence of local, regional or distant recurrence. The words, "there is complete response" to my treatment were amazing to read. There were tears!!! My final CA125 was 17. I was hoping it would be a bit lower however below 35 is the ultimate target so I'm happy.
I've started the Lynparza. I'm on day two. Will get bloodwork done every 2 weeks right now to make sure my body is adjusting well. Hoping the side effects are few and far between!!
Let the next phase of learning begin.
1
