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Port leak... sigh...

Port leak... sigh...

Posted by ChristineH on Feb 4, 2019 8:46 pm

Anyone has this happen? Or know of it happening?

These things usually happen to me. Today, I got my VDC treatment. Got the vincristine in. Then the doxorubicin. Halfway through it - or we think it’s halfway - my port started to leak. I got an unknown quantity of doxorubicin subcutaneously which is apparently the worst case scenario of leakage. Judging from the redness and heat, it covers an area the size of two of my hands, on my right breast. I’m on ice and on dimethyl sulfoxide applied on the skin. I’m already hooked up with a test to verify the integrity of my port, and OMG a plastic surgeon appointment in the next 48 hours as I’m told this could get nasty. 

My husband and I are freaking out a little bit...

 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Kims1961 on Feb 4, 2019 11:30 pm

ChristineH‍   So sorry to hear about your experience!!  I haven't had it happen to me but the nurses did mention that this has happened to patients in the unit.  Did they give you a number or plan should it become painful or what to look out for?  Good that there is going to be a consult with a plastic surgeon so quickly - at least someone else will be looking at it this week.

I can imagine the freaking out part - why can't things just be simple - isn't having to do cancer treatment enough?  I broke my wrist in the middle of chemo last year and had to have surgery - not the same  - but I so get the freaking out part.  My husband and I were the same.....

Keep us posted on how you're doing.  Sending healing energies.  Kim

 

Re: Port leak... sigh...

Posted by ChristineH on Feb 5, 2019 4:22 am

Thanks for the positive energies Kims1961‍. It’s not the same but it is in the sense that it’s something that detracts from your cancer treatment plan. I hope you recovered well.  This was my third treatment. My first treatment, I went very low neutropenic  (even with the injections, the second treatment I was below the panic level on neutropenia and my hemoglobin dropped low enough that I needed a 2 unit blood transfusion, now the leak happens on my third treatment. 

I’m a very logic mind. I know these things happen and I deal with the outcome, step by step. They did give me a plan for pain, for calling in if necessary, for going to emerg. I feel  I’m in fairly good hands. The “happen once in a million” things, they’ve been happening all my life. That’s partly why my signature says “Never a horse, always a Zebra”.

My husband is very upset and can’t believe that I’m scoring 3 for 3 in problems. He’s starting to loose faith in the team treating me. 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Lacey_adminCCS on Feb 5, 2019 11:28 am

ChristineH‍ 

I'm sorry to hear about the leak, sounds so uncomfortable. When I read your post I thought of your signature right away about always being the zebra. 

I hope it gets looked at quickly and it doesn't cause too much trouble. Please keep us posted. 

Please try and have less excitement for the remainder of your treatments 😊

Lacey

Re: Port leak... sigh...

Posted by Lianne_adminCCS on Feb 5, 2019 2:01 pm

ChristineH‍ 
Sorry to hear of your port troubles. I hope things settle down for you sooner than later. Wishing you more horse days and far less zebra ones

Lianne

Re: Port leak... sigh...

Posted by ChristineH on Feb 5, 2019 2:04 pm

Thanks Lacey_adminCCS‍. I’ve been wishing for a calm and boring year since I was about 16. 36 years later and I’m still wishing and waiting for it. 

On a good note, I’m off to see the plastic surgeon this afternoon. I’m happy about that as it’s getting painfull. 

Will keep you posted. If no one has posted about this, at least it will create a small source of info.  
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Lacey_adminCCS on Feb 5, 2019 3:03 pm

ChristineH‍ 

You're absolutely right-thank you for sharing to help future zebras 😊

Thinking of you this afternoon.

Re: Port leak... sigh...

Posted by Essjay on Feb 5, 2019 6:58 pm

ChristineH‍  So sorry this has happened to you. I’ve been having nightmares about my port leaking/detaching, popping out through my skin etc, but so far so good. 

I hope that that they can ease the pain and sort out the damage very swiftly so that you can continue with your treatment. 

We we are all here in your corner, for horses, zebras, whatever’s...xxx

Re: Port leak... sigh...

Posted by ChristineH on Feb 6, 2019 1:19 pm

Short update. 

I saw the plastic surgeon yesterday afternoon and he’s confident that I should be ok within a week or so. 

I’m in pain, on Percocet although I don’t like them, I’m swollen up, bruised, on ice most of the time and applying the DMSO every 6 hours. At least, the area affected seems to have stopped getting larger.

It’s not a fun challenge, and at the best estimate, only 2-3ml of doxorubicin leaked in. Seeing my oncologist tomorrow for follow up. 

Thank you all for the good wishes. 
 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Kims1961 on Feb 6, 2019 3:00 pm

Thank you for the update!  Sorry to hear about the pain...I was also on Percocet last year with the broken wrist....stool softeners were my friend 😉 They took the edge of the pain.  I didn't want to be on them either - but they worked for pain so that was helpful and hopefully you will only need them for a short period as this heals.  

That's great that not that much leaked - although you don't want any leaking next time that's for sure!

Love the Zebra analogy🦓..you have a great sense of humour!

Good luck with the oncologist.

Kim

Re: Port leak... sigh...

Posted by MojoF on Feb 10, 2019 11:08 am

So, I was googling port leaks, just like you knew I would, and I found this and thought AHA!  Wonder if Christine has seen this. Then I realize that it's you. :)

Re: Port leak... sigh...

Posted by ChristineH on Feb 11, 2019 6:22 am

Another quick update. 

When getting chemo via a port, it’s extremely important to get a blood return. If the nurse doesn’t, push back on getting the treatment. 

This is a week later, my breast is black and blue and starting to blister. The plastic surgeon started me on Keflex yesterday. The pain level requires Morphine or Dilaudid but I’m allergic to them so I’m stuck on Percocets and they’re not cutting it. 

I’m starting to get worried about necrosis and debridement. 

I’m seeing the plastic surgeon tomorrow to follow-up.
 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by mycrazyjourney on Feb 13, 2019 2:10 pm

ChristineH‍ , I can’t even imagine what you are going through, you are one tough lady... you are so right about good blood return, and proper needle insertion on a port. I have a difficult port that was not put in properly, it likes to flip over and move from side to side. It’s a pain in my, let say boob... before  chemo I have to move the port around so it’s in the proper position. I have found that the nurses are great, but I now have a permanent bruise over my port from all the pressure they put on my chest. The nurses feel bad that they have such a hard time getting the needle in the proper spot. Once I had to get mad at a nurse, and tell her to remove the needle because it was not in the proper spot, trust me when the needle is just on the edge of the port and is inserted fully you feel instant pain. The nurse swore it was in the proper spot, well she was wrong ! She felt horrible, I laughed and said ‘third times the charm’ I hope you heal well and have no lasting damage to your breast. Therese

Re: Port leak... sigh...

Posted by Essjay on Mar 7, 2019 8:57 pm

Hey ChristineH‍ Was wondering how you are healing after your port leak?

Has everything settled down, and is your treatment back on track?

best wishes

Re: Port leak... sigh...

Posted by ChristineH on Mar 8, 2019 10:24 am

Well Essjay‍, this is going to be a REALLY LOOOOONG process. I’ve learned that in an extravasation, it takes about 5 months for doxorubicin to be reabsorbed by your body. 

Right now, I look like a burn victim. And I’m sure this is how a burn victim feels. My breast is pretty raw, a very deep red and very hot to the touch. I’m still on Percocets (it’s been a month), and I don’t see the end of it. I have very low stamina. I find I can do only one thing per day. Like one load of laundry, or dust one room. I have a hard time lifting things, or pulling/pushing - no vacuuming for me! (There’s the silver lining, lol)

All and all, I don’t wish this on my worst enemy. 

My chemo is suspended until everything heals, and we now know that I will need the port either realigned or changed. 

On the flip side, I’ve had my first scan, and after just 3 out of 12 cycles, all the lymph nodes affected by my cancer have downsized significantly and the spot on my spine is completely gone. So I’m very happy about that! I just can’t jump up and down or do a woohoo with both arms to celebrate it 😆

I’ve been keeping an eye on you to see how you’re doing. I know it’s hard to get the wind taken out of our sails, but keep in mind it’s only temporary. You’ll have energy back by the time the better weather gets here 😃
 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Essjay on Mar 8, 2019 2:07 pm

You sounds so positive ChristineH‍ you are an inspiration!

i hear you on pacing yourself! I’m having to do the same - the old me who used to be on the go all day is just not here at the moment!

i hope your recovery continues and the burning feeling eases very soon.

Essjay (Selena) xx

Re: Port leak... sigh...

Posted by Lianne_adminCCS on Mar 8, 2019 2:35 pm

ChristineH‍ 
Oh my goodness, those zebra days just keep piling up don't they? I am sorry to hear all the trouble you are still experiencing with your port. It sounds like you have settled into what will be a bit of a process. I don't mean that as in giving into the process but more that it it is the reality and that you will work with it - I think that is the best thing you can do for your own mental health.

On the bright side, how fabulous to hear about your nodes and spine spot. I hope that news will tilt the scales a bit for you as far as news of late and you are able to celebrate it - even if it is just a toe wiggle or a fist pump.

Thanks for the update

Take care

Lianne

Re: Port leak... sigh...

Posted by ChristineH on Mar 25, 2019 10:28 am

Today is 7 weeks from my chemo accident. Healing is an achingly slow process. I’m still on percocets 24/7, and I’m happy to not have an infection. For 3 weeks now, I’ve had an eschar on my breast (I’m letting you search if you’d like) almost the size of my hand. It’s really unclear when that’s going to come off. 

It seems that all my energy goes to healing. I’m still spending most of my time in bed or on the couch. I even nap during the day which I’ve never done in my life. When I can, I try to go for coffee just to get out of the house, but that takes a lot of energy out of me. 

Can’t wait for this part to be done. My personal opinion now is that chemotherapy is a walk in the park compared to this. 

 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by luvcurling on Mar 25, 2019 12:11 pm

ChristineH‍, no words can totally describe the sorrow I'm feeling that you are going through this.

Healing of this magnitude in addition to having continual pain is no fun and I know now from personal experience how debilitating it is. I offer positive thoughts in your healing journey. Know that it does get better, over time. How long, each of us is different, so there's no way of knowing for sure when. However, believe me, it gets better.

I do have one question, is your plastic surgeon aware of the eschar? If not, I urge you to get in to see him in the very near future to seek guidance and continuing medical care.  

Do your best to eat well (lots of protein for healing); rest when you need to, your body needs tremendous amounts right now; and above all else, seek the positive and try to focus on those. 

Please keep us updated!
luv curling - Colleen

Re: Port leak... sigh...

Posted by ChristineH on Mar 25, 2019 1:46 pm

luvcurling‍, thank you very much for your reply and it’s positive message. 

You mention personal experience. Have you also suffered an extravasion? I’m still looking for someone who has, question of comparing experiences. 

Yes, my plastic surgeon is aware of the eschar. It appeared 3 weeks ago and I saw him on day 4. He debrided the slough that was on one side and opted to leave the eschar since it’s not always a bad thing. I’m now being followed bi-weekly and the response to anything new is very quick and efficient. Can’t wait to see them this week, I’m itchy - which I hope is a good thing. 




 
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by luvcurling on Mar 25, 2019 3:11 pm

ChristineH‍ I have not experienced an extravasion but have great deal of personal experience with eschar and pain. 

I really keeping my fingers crossed you remain on this healing path. Itching is a good thing and I'm so glad you are seeing the plastic surgeon regularly. 

I don't even want to mention what my path was in case I jinx you. I'll leave it by saying, my incision/wound is finally almost healed (one tiny spot left) after having a mastectomy in December 2018.

Slow and steady wins!

Let us know how your next visit with the plastic surgeon goes.🤣Happy thoughts!

Luvcurling - Colleen


 

Re: Port leak... sigh...

Posted by Lianne_adminCCS on Mar 25, 2019 4:35 pm

ChristineH‍ my dear zebra

Thank you for your update. I am sorry you are not as far along as you would hope but I am happy to hear you are in good hands and being monitored. 
I did a search for extravasion on the site to see if anyone else has posted about but didn't find anything.
I'm thinking the itching is a sign of healing? I certainly hope so.
As luvcurling‍ said, let us know how your next appointment goes

Take care

Lianne

Re: Port leak... sigh...

Posted by ChristineH on Mar 31, 2019 7:18 pm

On Thursday, I saw my oncologist. This is now a “let’s touch base and see how you’re progressing” bi-weekly appointment, since all treatments have been put on hold until my chemo “accident” heals.

What I was much more looking forward to was the appointment with the plastic surgeon. Interestingly enough, he brought a second plastic surgeon with him to take a look and discuss the odd case that I am (nothing new to me, see zebra note in signature below 😆). 

The main topic was does the eschar have to come off or not. Taking it off possibly means agitating the whole thing. It might mean taking out a fist size of necrotic tissue and having to stay in the hospital for months while an open wound heals. At the very minimum, it means a skin graft. Not very tempting. On the other hand, my wound is not infected, it doesn’t ooze anything and the eschar is intact. But letting it heal itself means months of delay on continuing my chemo. We all opted to continue to let it heal and keep a close eye on it. We have now added a good load of ibuprofen to help with the inflammation, and I continue to take lots of percocets. 

One little win. Everyone at the hospital seems to be hiding from this. But not the plastic surgeons. They have acknowledged loud and clear that this is a chemical third degree burn, and possibly a 4th degree. 

Life goes on and we keep up the fight!!!
Christine “Never a horse, always a zebra”

Re: Port leak... sigh...

Posted by Elsie13 on Apr 1, 2019 1:50 pm

Oh my goodness, ChristineH‍ , what an annoying situation!  I didn't know what eschar was, so I did a bit of research and came up with something about how important it is for care homes and so on to understand what eschar is, and about billing! Weird. https://www.woundsource.com/blog/knowing-difference-between-scabs-and-eschar  

Re: Port leak... sigh...

Posted by ChristineH on Apr 1, 2019 2:33 pm

Oh yes Elsie13‍, it’s not a fun adventure, that’s for sure. And my eschar is almost the size of my hand. It’s ugly and saps all my energy. I found this site that also explained what it is well: https://advancedtissue.com/2014/03/brief-overview-eschar/
Christine “Never a horse, always a zebra”