Havent been here for a while but feel the need for a chat!

YvonneM

Hi all, Since my original diagnosis in April 2013 I have had lots happening.  Right mastectomy, axillary clearance and of course chemo and radiation treatments and then bone mets.  I have been going well and had, until recently been on Arimidex and then Capecitabine.  As my tumor markers have just started to trend up slightly, my oncologist changed me to Vinorelbine, boy was that the chemo from hell for me.  The side affects were awful and constipation was at the top of the list for me with this drug.  I ended up spending 5 weeks in bed and taking just about every concoction known to man to try and get some relief.  After three sessions my oncologist took me off Vinorelbine and gave me a three week break to try and rest my body.  This week I started on Liposomal Doxorubicin and so far so good. But don't know much about this yet, glad of any info you may have.  No side effects to mention just yet.  The downside was though that my veins are not happy and I will be having a port inserted before my next chemo.  Feeling a bit nervous about this, I don't know why as I am usually positive and upbeat about what I have to do.  But just of late I have felt a little anxiety sneaking up on me I hope I can shake this and get back to being my usual self. Thanks for listening ladies...Von

Zoffiel

The ports are OK. Well, it's a bit creepy and I will be pleased to get rid of mine (if that ever happens) but compared to constant needles it's a blessing. I can understand your reluctance, but it's not that bad. Marg

YvonneM

 Thanks Zoffiel, that's good to hear.

melclarity

Von I didnt have a port, but am left with severe arm cording due to Chemo, I think you'll feel better with the Port however. I also think too, the longer the journey and what you have faced there are absolutely moments when all of a sudden you lose your footing and feel you can't face or do the things you would normally step up and do. After my recurrence in 2015 and finishing Dec 2015, all last year I couldnt face needles or hospitals I found myself starting to have a panic attack. SO NOT ME. I did find though with recent surgery all of that settled down. So I think it is moments and we then gather our footing and keep going. Hugs Melinda xo

YvonneM

Thanks Melinda I am hoping it will all settle back into normal again soon  (that is our normal anyway)  It was traumatic enough having the chemo this week, felt for the team as it took 3 nurses and the RMO over an hour to find the vein before we could get started.

melclarity

You absolutely will, I dont know but I think we have these moments of panic and reality where we look ahead too and think OMG how can I do this, this and this in terms of treatment etc., so once you bring yourself back to the moment and what youre doing at hand you do settle back into your rhythm of one thing at a time. So normal I think! Uuugh I had some of those too, key was keeping arms warm on way to infusion for me, heatpacks and hydrating the day before massive amount of water. Some were inexperienced and tough going as you need experience when youre doing that every week. xo

Unicornkisses

I have recently had a port put in, YvonneM. I had it inserted in day surgery, under a general, but I have heard you can also have it with sedation and a local. I think I prefer my way, I would not be happy seeing them working on me that close, but I am squeamish.
The port took a while to settle down, there was tenderness and bruising and I can see why they wanted it in at least a week before chemo started. There is a short scar, and a lump where it goes over my collar bone. I found my body took a while to accept it and I had strange pains in my neck and chest for a while, but it was quick and easy to access for Chemo and my hands were free to do things while I was there.
A couple of things, hopefully you won't have it situated under your bra strap, or it will rub.
Also, car seatbelts are a problem, they cross right over where mine sits, very painful. I am going to make a cushion to go over the strap to keep it away.

Good luck with your next rounds of treatment, I hope you can find a way to be comfortable.
I too have bouts of anxiety and feel very down. This is all very stressful, no wonder we do.
And the toll it takes on our bodies is hard to imagine.

Vix

Hi Von! I never had a portacath with first in 2010, I was stubborn & refused. I have lymphoedema in my left arm so no I/V or BP on that side. My right side veins strugglef but got through it. Fast forward to bone mets 2013 & brain tumour surgery & elevated ALP 2016, tumour markers rose and oncologist recommended Abraxane and a portacath needed as Abraxane every week for 3 weeks and a week off. I am the biggest chicken ever when it comes to anaesthetic but the portacath procedure was quick, it has been so good and truthfully so glad I have it as I have been doing chemo since September and will continue for a bit longer as tumour markers keep going down and lowest they've been for years. Bit of numbing cream an hour before it's accessed, painless to access and just no problems at all. Wishing you all the best Von, big hugs xx

DeCarney

Hi Von. Have had the port inserted when it was recommended by my oncologist. To put your mind at ease I think it was the easiest of all of my surgeries, as I think back. I don't think I realised how fabulous it was at the time.I remember it was a little uncomfortable and weird feeling initially but ok. It settled quickly.  Then it had to be removed only a few months into my treatment. I really missed it... That sounds strange.  Now I have just a small scar. Hardly noticeable. I think I was asked once about it by someone?? I have massive scars from my lat dorsi op that noone ever mentions,  so I know it looks bad. lol
But back to portacath  After she was gone ....OMG....the poor nurses!!..... It took them so many attempts to access my poor veins in my left arm. It became a bit of a competition between them which lightened the situation. Bless them.( Lymphodema risk on my right arm.)
You sound like a strong girl. I'm sure you will blitz this too. De xx

Cate64

Hi Von, i had a port put in under heavy sedation... i dont remember a thing, only thing i found was the seatbelt annoyed it but i bought a sheepskin cover for it & now its fine,  doesnt bother it at all.
When chemo finished i requested it be left in. Now, a year after chemo finished its still there & there it will stay. Makes everything sooo much easier, blood tests, ct scans, bone scans all thru the port instead of digging for a vein.. I have also had it accessed once at short notice without numbing cream, hurts no more than a regular blood test...

primek

My port was uncomfortable sleeping for a bit but ended up finding I just needed to hug a flat pillow. Don't need to now. Mines been in about 8 months. Certainly less issues than finding a vein. I had it done under a  general anesthetic, very quick and up and out on no time. The scar healed really quickly too. Best of luck. Kath x

YvonneM

Thankyou all for you caring words and for sharing your port experiences, it has been what I needed. You have all done wonderfully well.   I feel more positive about this now and will keep in mind what some of you have done to overcome the discomfort.  I need to move on from feeling anxious (some serious self talk I think!).  I have never felt like this before and its a new thing for me. 

Also if anyone has experienced Liposomal Doxorubicin I would love to hear how you have found it.  I am at day 5 and no side affects thus far  YAY!!!

So glad I logged on again....Von

YvonneM

I had my port put in yesterday....was drama free, got the happy drugs!!  But what I wasn't prepared for was the stiff neck I got last night.  I couldn't turn over or sit up in bed.  It was too painful to move.  I had to resort to taking Endone to get some comfort and sleep.  But starting to feel a bit better now.  I expect it will be okay in a couple of days.  Thanks for listening.  Von

Unicornkisses

My port took a while to settle and I got all sorts of weird pains that moved around, in my neck and chest until it did, it took a bit over a week. My body did not like it being there I think.
It is still a bit tender if I bump it even over a month after insertion, but as the chemo makes my skin more tender and easier to bruise that could be the reason.
It does make chemo a lot less traumatic for me so it is worth it.
I am currently on FEC so can't help with your drugs, I'm afraid.

Good stuff though if you are handling it well!

Coffee

I use a bulldog clip or plastic clamp on the seatbelt, and have it so the seatbelt has a bit of slack. I did wonder if in an emergency braking situation it would work, and it does grab and hold like it should (yeow, that hurt lol).