Regimens, side effects, and support from others going through chemo.
Posted on: Mar 17, 2012 09:54AM
Posts 1 - 25 (25 total)
Mar 17, 2012 10:12AM kltb04 wrote:
Oh my, no it didn't happen to me but my BS went into great detail about the possibility...I had my port a week ago Friday. Once you get past this complication, I think these ports will be our new best friends. Feel better!
Mar 17, 2012 10:16AM belly wrote:
wow have not heard of that I'm so sorry. I had a port inserted in 2009. It was the best thing i ever did. I used emla cream to numb the area at first before the needle was inserted it helped the intial sting until i got used to it. Hope you are feeling better
Mar 17, 2012 10:22AM kltb04 wrote:
Not to hijack your thread Muscles but I had a question for belly. I am SUPPOSED to go for my first chemo Monday (have had SNB complications/infections/long story) Anyway, I have the numbing cream but no one told me how to really use it. Do I just slather it all over the port area, even on top of it? I had my port accessed once already, last Monday they used it to draw blood and give me iv antibiotics and I didn't have any pain or anything but I know the chemo going in will be worse. Thanks for any info.
Mar 17, 2012 10:30AM Omaz wrote:klt - I did not do any numbing for my port and I did chemo and a year of herceptin. The nurse had me take a big breath and then as I exhaled she stuck in the needle. It just felt like a poke and then was pretty much fine. I think sometimes ports are placed deeper and that can be more painful.
Mar 17, 2012 11:00AM reesie wrote:
Muscles, this didn't happen to me but you migHt want to Pm exbrnxgrl (caryn). She was actually walking around after surgery with a collapsed lung.
Kerri, I never used the Eml cream and had no problems with pain from the chemo. The pin prick was the same with and without chemo. However my understanding is you just put it on where they3e gonna poke you so you don't feel the poke. The chemo going caused no pain.
Mar 17, 2012 11:26AM kltb04 wrote:
Thanks for the input y'all. When they did the stick for the blood/antibiotics at the MO office, it didn't bother me either. I guess I will use it since I have it - and it was $65 - omg I couldn't believe that when I saw it.
I actually would not let them use it when I went for my last surgery (the reexcicion of my SNB) because I was at a different hospital than I had used before and the nurses literally had no idea what they were doing. Kept asking me what size needle they should use??? So I was like "dig for a vein DO NOT screw up my port" But that is another story.
Mar 17, 2012 02:56PM Leah_S wrote:
Karri, when I use the Emla I put on enough so I can still see it (a layer of white, in other words) and then cover it with saran wrap. The covering it is important, I've been told.
I know a lot of people don't use anything but at this point I'm so tired of pokes and prods that one less needle prick pain is what I want.
Muscles, I hope you're doing better now and that your chemo is easy on you.
Mar 17, 2012 03:01PM exbrnxgrl wrote:
Yes, Reesie is correct! I was walking around for 2 weeks, going to the gym and leading a relatively normal life until my 100% collapse of the right lung was discovered on a PET, done for unrelated reasons. Suffice to say it was one of the most awful and painful things I have gone through, once they started to treat it. You can pm me if you want details. I was aware, when I signed the surgical consent, that this was possible, 1% of the time. Well, I hit the jackpot. The good news is when it was all done, my port worked just fine and I couldn't live without it! Hope you are feeling better.
Mar 17, 2012 06:07PM , edited Jul 17, 2012 09:51PM by exbrnxgrl
If you use EMLA do the Saran wrap as Leah advised and tape the edges down. You need to apply this 1 hour before they access your port. My center also offers a lidocaine spray which works just as well. I'm saving my EMLA for the IV in injections before PET scans!
Mar 17, 2012 08:27PM Judy_63 wrote:
My story is the same as Omaz, just a deep breath and poke and the same when she takes it out deep breath, but so far I don't feel anything when she withdrawn the needle. I have had 8 treatments of chemo and I'm on a weekly treatment of herceptin for a year and that will be over the first of August. So my port has came in mighty handy.
Mar 17, 2012 09:06PM shells43 wrote:
To the OP Muscles, this didn't happen to me but to a friend with BC. She also got a pneumothorax, and she told me it is not really a punctured lung, but air that gets around the lungs that causes it to collapse, I guess when they are digging around in there installing the port. She is very thin and I'm not so wonder if you have more "padding" if it makes a difference?
Mar 18, 2012 06:24AM Muscles wrote:
Hi Shelley. Sorry your friend went through this too. I have pneumo thorax/lung collapse. That's EXACTLY why they said it happened!!! They said since I'm so small, it was harder for them to find that sweet spot, & ended using my jugular. Guess all the prodding knicked the lung.
Apr 2, 2012 01:08PM dancetrancer wrote:
Hi muscles...and hey caryn! Well, sad to join your little pneumothorax club, but here I am!
Had my port installed Friday (subclavian). It was supposed to be a simple little outpatient procedure. So much for that! I was getting ready to leave post op when I developed severe pain at the hollow of my throat, underneath my scapula in the back, and underneath my reconstructed breast on the front. After repeat x-rays the doc confirmed a pneumothorax. It was only 10% per her estimate but that sucker hurt!!!
I was admitted on O2 for 2 days and observed on telemetry. Fortunately it appears to be resolving on it's own without the chest tube, which I know is incredibly painful.
My surgeon said yes the risk is higher in thin women, less room for error. Caryn, I specifically told her I was worried about pneumothorax, b/c I remember your complication from our MX thread. She reassured me it only happens in like 1% of the cases. Crapola!
I don't think I'll ever be one of those women who say they love their port. LOL
I'm still feeling short of breath at times and have crackles with deep inspiration/expiration. Minimal tolerance for activity before I become short of breath. Better every day, but plain and simple..it sucks.
Apr 2, 2012 04:58PM exbrnxgrl wrote:
I am so sorry that you had to go through this but glad that it appears to be resolving without the dreaded chest tube. I can't even begin to describe that bit of agony. Yes, everything I've read said that the chances are only 1% of a lung puncture and although it seems greater when you look at our little sampling I think when you look at the total number of ports installed for all possible treatments it probably really is only 1%. Lucky us!. BTW, my lung had a 100% pneumo so my only option ws the chest tube. I walked around for 2 weeks with no symptoms! Anyway, as you heal, I hope that you don't resent the port. I love mine now and couldn't imagine being without it. Take good care of yourelf.
May 5, 2012 08:48AM Muscles wrote:
Dancetrance, so sorry you had to "join the 1% club." Now if only we could apply those odds to the lottery lol! I month after mine healed, I developed a very painful lung rub where the chest tube was. Doc put me on High dose of anti-inflammatories and it went away quickly. Hope that's the end of that! I was recently admitted for netropenic induced fever because my Neulasta shot didnt' work and the dang nurse in the hospital kept poking at my port and couldnt' access it. So they brought in another nurse, but in the meantime some antsy phlebotomist came in and would not wait for the port so she took the blood from my arm. I was like no way, you have no idea what I went through to get this stupid thing and she just went ahead and used my arm. Needlesstosay the second nurse was able to access the port. Can't wait till the hospital survey comes! Hope you are feeling better and all is going as good as possible for you!
May 5, 2012 08:57AM exbrnxgrl wrote:
I still love my port but am adamant that only trained nurses from the infusion center go near it. My infusion center is connected to the hospital and is open very long hours and on weekends so I've been lucky to never have a problem. Caryn
Jul 16, 2012 01:51PM 25weeks wrote:
Muscles & Caryn-
You can add me to the pneumothorax caused by port placement list. I'm very thin as well. Maybe if your in the 1% of folks who are very thin, your actual chances of having a pneumothorax are a bit higher. I'm 5'71/2" and weigh 113. I don't remember being told or reading about the risk.
I'm pecking away on my phone from the hospital where I've been for 6 days now! I knew something was amiss the evening I got home from my ALND & port placement surgery last Tuesday afternoon. Whenever I would sit up from a reclining position, the pain at the inside base of my rib cage on the left side was intense and I could hear gurgling when I'd breathe in & out. I had an appt with my MO the next morning, so I figured I'd let her take a look/listen.
I described the pain & sensations & she listened and sent me for a stat chest X-ray (luckily her office was in a hospital). I waited in the chemo room for a good 30 minutes chatting it up with a patient before my doc came walking urgently to me collecting my things on the way. She said I have a pneumothorax and a pretty significant one at that. She wheeled me quickly to the ER.
They worked very quickly once I got there. Finally I heard 80% pneumothorax and was told a thoracic surgeon was on his was to insert a chest tube. That was one of the worst and most painful experiences I've ever had. Reinflation of the lung was excruciating! They hooked my chest tube up to suction & here I sit six days later still in the hospital.
I know you guys made it through and have made it through & have moved on, so any complications since then? Today was the first day with no bubbles so she turned off the suction & I only have a water seal now. I hope it continues to heal as the last thing I want is surgery.
Thanks for listening. It's been a long, difficult week.
Jul 16, 2012 04:48PM exbrnxgrl wrote:
I will start by saying that it does get better. I too spent six days in the hospital. I had one chest tube inserted in the ER which, literally, fell out the next day. The second chest tube was inserted right there in my hospital room. After a few days, my thoracic surgeon didn't think my lung was inflating enough and had an interventional radiologist insert one in the front of my chest while I was heavily sedated. The insertion in the ER was the worst! I finally went home with the third tube in place and a Heimlich valve for four weeks. Stubborn lung... I totally understand what you're going through although I was aware of the tiny risk as it was in the consent form. The good news is that my port works well and I love it despite the rocky start. I'm sorry you've had to join the 1% club but this too shall pass. Take very good care of yourself and I hope you get out of the hospital soon.
Jul 18, 2012 06:58PM 25weeks wrote:
Thank you for following up. I'm *still* in the hospital. They pulled the chest tube yesterday, and I was in immediate pain & felt the bubbles again. I currently have a 20% pneumothorax, and it's been stable since she pulled the tube yesterday morning. The plan is to let me go home tomorrow in hopes that it heals itself. If not, I will still have to have surgery to fix it.
I'm just glad to be going home tomorrow. This place is starting to get to me. And I miss my kids terribly. ;)
Hope all is well with you. I saw that you won't need any further treatment. That's fantastic!!
Jul 19, 2012 01:47PM leggo wrote:
I have a stupid question. Did you ladies not get an x-ray after port placement to make sure it was not affecting the lung? I'm really just curious, as I had a perma-cath inserted a while back and the first stop after the placement was the x-ray dept. to make sure lung was o.k. Apparently, common procedure when doing port placements and perma-cath placement at my hospital. I find it kind of weird that other places would use a hit or miss approach (i.e. maybe you'll be the 1%, maybe you won't). I'm very sorry for all of you that suffered through this lung issue after port placement. That really sucks, especially when a simple x-ray could confirm it's correct placement.
Jul 19, 2012 02:00PM , edited Jul 19, 2012 02:01PM by exbrnxgrl
I think the chest x-ray is standard procedure whenever a port is installed. I don't think anyone uses a hit or miss approach. I can't speak for the others but my x-ray looked perfectly normal. What happened was that I had a tiny nick in my lung,so it didn't show on the x-ray. However, over the course of two weeks, it slowly deflated. Kind of like a slow leak on a tire with virtually no symptoms. I think pneumos that are discovered right away, on the post install x-ray, and odd situations like mine, are what compromise the 1%. I highly doubt it's " maybe you'll be the 1%, maybe you won't".
Jul 19, 2012 03:47PM 25weeks wrote:
I also had an X-ray that looked fine in the recovery room. But I felt something was amiss when I left the hospital. I had a MO appt the next morning and she sent me for another X-ray. That's when they discovered mine. So for me, it was a matter of hours. But I did feel something was not right by that evening. Seems they should have done an X-ray on you. I'd follow up with your doc or the facility. Perhaps they took one while you were still in recovery, but you don't remember it?