Port for chemo

[Renavf]

Hello ladies had a port put in Tuesday afternoon. Had my second round of chemo on Wednesday. The port did make it easier. Anyone else freaked out that the catheter goes to your jugular? 😳

[nettieanne]

Had my port 4yrs now wouldn't be without it .best thing I ever did only thing that it can't be used for is the liquid they use when u have a ct scan ,everything else is ok ,I'v antibiotics,blood transfusions,chemo,or just fluids . As long as it is flushed regularly it will last .

[Renavf in reply to nettieanne]

That's good. Thanks so much nettieanne

[EnaC]

So far I have only been offered a PICC line. These come out at end of treatment and is restrictive if you are a swimmer. Had my second put in on Wednesday

[Lost4Words in reply to EnaC]

Hi EnaC, a PICC can be left in. I always leave mine in until I've had results and know I wont be having anymore treatment. The nurse told me they can stay in for 18/24 months as long as they are cleaned and flushed regularly.

I never tried but I wonder if the new Limbo (sleeve for bathing/showering) that you get now would be safe for swimming.

Best wishes

L4W

[EnaC in reply to Lost4Words]

Didn't realise they could stay in longer. I did have a good 5 month gap between treatments and the fitting of it is not bad at all.

I am not a swimmer but have bought covers for showering and baths

Ena x

[Solange in reply to Lost4Words]

Sadly, I was told that the "Limbo" is definitely NOT suitable for swimming

[lesleysage]

Hello, I too have a subcutaneous port just below my left collar bone so chemo can be pumped in easily etc and it doesn't prevent me from swimming which is one of my main ways to keep as fit as I can and hence, as my hand veins were 'shot' from the previous chemos, this was the best solution. Once the chemo was over and I moved onto port maintenance, to save traveling, my GP, who had had experience when on his hospital training of fitting port, said he'd do the flushing out to save me taking half a day plus (we are over an hour to the chemo centre) to get to the clinic on a regular basis - he said he'd use it as his 'Continued Professional Development' (CPD) which suited him!! After finishing off the few given to me by the hospital to get my GP started, I've had to buy the 'Huber needles' which are the ones specific to my port (about £250 for a two to three year supply, depending on the frequency of flushing them out) He does mine every 6-8 weeks now to fit in with his work pattern and days I'm free. I'd love to think I'm going to get through the box of needles!!

Yes, I found the procedure to get it in made me feel quite ill, but the hospital's heating had broken on my implantation day so it was incredibly cold; also I was 3 weeks after the second major surgery in 20months and 18 months since the previous chemo had finished, so I was hardly 'robust' - in fact felt very 'whimpy' about more knives etc. The anesthetic did make me sleep throughout so I've no memory of that, just the intense cold and shivering due to the cold. Mine felt sore under the car seat belt whilst it was being used ; I was on a dose dense weekly regime for 6 months so it was used once for bloods and then the next day for anywhere between 5 to 7 hours depending on the cocktail of the day. I made a padded small cushion which sat on my shoulder so raising the seat belt well off the port opening; I stopped needing it a few weeks after chemo finished. I'm really glad I went through it now.

Good luck with it and I hope 'it' and the treatment work out well for you.

Lesley

[Renavf in reply to lesleysage]

Thanks Lesley. I find it uncomfortable under the seatbelt. Great idea for putting in a little padded cushion.

[LesleyGreengran]

My port is great. I had a PICC when I was on avastin but I reacted to the dressings - all of them eventually - so they took it out and put one in my chest. Now I can swim, shower properly and everything else - just go out when it might rain without worrying. Doesn't bother me where the catheter goes though it is a bit odd being able to feel it going up towards my collarbone. I read a lot of science fiction when I was young though so bionic is fine. But they only access it in the chemo unit and say that other nurses, radiographers and Simon haven't been trained to use it. I wish the radiographers could though my veins seem to have got easier to get cannulas into since I've had a port and they're not being damaged all the time.

[LesleyGreengran]

Simon !! that was meant to be 'so on'

[Taichipat]

I had mine fitted yesterday and found the whole procedure not too bad. Practised my yoga breathing. Found later in the evening it was quite painful when the anesthetic had worn off especially when moving. Husband had to help me off with my top but today much better. Was all ready for treatment today after spending night in hotel but unfortunately bloods too low. Never goes to plan does it? Will be having a lower dose and injections next week to bring up the white blood count. I don't know how I am going to fair with the treatment hope I am not going to end up with any more hotel st ays. Its the having to go two days on the trot when you live a distance. It is so akward especially when you find out too late to cancel that your treatment is not going ahead.

Patx

[judyved-US in reply to Taichipat]

Hi Pat...

Just wanted to tell you that when I had a low white count after I had 3 or 4 treatments, I had a neupogen injection to raise the white count. I suggested to my doctor that maybe I could have a neupogen injection weekly, as a prophylactic measure. He agreed, and ordered the neupogen injections twice a week. Chemo was on Wednesdays and neupo on Thursdays and Fridays. I never had another problem with the white count after that! Of course, I did have low red counts and had to be transfused 3 times, but they can't do anything to avoid that. I hope your treatments go well. So glad you have a port in. Mine has been in for a year now. They said that if I go a year from the end of chemo (Feb.25th), they'll take it out. I'd rather have it and not need it, than need it and not have it! Thinking of you.......Judy

[tntknc in reply to judyved-US]

So Judy you had the neupogen injected right into the port? Two years ago I had to have neulasta injections for losing my white cell count but they just did a regular shot in the arm. Also, how was the neupogen for you? I hated the neulasta shots and how long the pain stayed with me. I start chemo again this coming Tuesday as I have a couple of lymph nodes that have highlighted and need to be treated.

[judyved-US in reply to tntknc]

No, they didn't use the port for the neupogen injections. It was into my arm. I know another woman who had neulasta, and it really bothered her, too. The neupogen wasn't bad at all. I had some bone pain for a day or two after, but it wasn't too bad. I don't know if that had any cumulative effect, but after my chemo ended, I developed a sort of arthritic type pain in my low back, hips,knees and feet.....in addition to the neuropathy in my feet. I don't let it stop me from doing anything, though. It may just be an after effect of the chemo, or it may be my age (69). I'm in very good shape for my age, so I don't think it's that. I hope you can have the neupogen if needed instead of the neulasta. The neupogen seems to be less bothersome, and it certainly did the trick for me. I wish you luck with everything.......prayers to you and your family. Judy

[Taichipat in reply to judyved-US]

Hello Judy thanks for the information. When I was at clinic on Thursday I was told dose of chemo would be reduced on Friday and I will be sent home with 3 injections that my husband can administer into tum to bring up the white blood cell count. Don't know what this is could it be the same? Will see on Friday. Am concerned I have not had treatment now for 3 weeks and worried cancer is romping away. Dr said I only had 2 to 3 months without treatment so where does that leave me? Still hopeful, you have to be don't you?

Patx

[judyved-US in reply to Taichipat]

Yes, it sounds like the injections you'll be taking at home is the neupogen. I had mine at the oncology center because that's how my insurance would pay for it. I have a friend who did her own injections at home because that's what her insurance would pay. I am in the US, so I guess all this insurance business is different from yours. It would have been much more convenient for me to do it myself, but the expense would be prohibitive. I'm also lucky that the oncology center is in the hospital that's about a 15 minute drive from my house, so it was no problem to go there for the injection.

I'll pray extra hard that the neupogen does the trick for you as it did for me. Only God knows how long any of us will have. I know you're doing everything you can to keep the monster away for as long as possible.....that's what we're all doing. I try not to waste any time being sad and thinking negative thoughts. I am grateful for my family, my otherwise good health, and for every day I have. Hey, any one could get hit by a bus tomorrow, so we should all live with gratitude and happiness every day! That's my humble opinion.....and, it works for me.

Do you do Tai Chi.....as your name indicates? I took classes several years ago, and I still practice so I don't forget. I also do yoga, weight training and cardio. I'm trying to stay as strong as possible in the event I need chemo again. I was diagnosed at stage 4, but so far so good.

Stay positive, Pat. Try to imagine the neupogen coursing through your body to make those good white cells with every injection.

Prayers coming across the ocean for you and your family.

Keep us posted...........Judy

[Taichipat in reply to judyved-US]

That's very kind of you. I am not downbeat at all. Don't do Taichi it's a nickname I have acquired. I do or did do yoga, badminton and keepfit and Zumba I really enjoyed but not been able to do since my diagnosis may 2014 ( only had a 4mth break from chemo in this time). Luckily I am very into craft making and this has filled the void in my life. Crocheting, knitting, felting and just completed rag rug for sons flat so I am never idle. Wish I could just have a little of the life I had before. The yoga breathing definitely helped when having the port fitted. Keep in touch. Far-away buddie.

Patx

[judyved-US in reply to Taichipat]

So glad you're busy and have much to fill your life. I was into crafts, too......polymer clay. I haven't had the incentive to get back to it, but I'm sure I will. I'm busy every day, so no time to brood!

Please keep me posted on your progress, and I'll do the same. Hugs from across the "pond".......Judy

[Taichipat in reply to judyved-US]

Will do Judy

Patx

[tntknc]

I have a power port that was put in and it was the best thing I could do for myself. No stressing about getting stuck in the arms each week for chemo and the potential for collapsing any veins! As long as it gets flushed and kept clean it is not a scary thing at all and eventually just becomes a part of you that you will forget about for the most part. I just had a nurse tell me about a friend of hers that has had her port in for 10 years now. I don't know that I would want to do that but nice to know that it is possible and no problems or issues.

[LadyBlueTC]

not a problem for me. I had mine put in before my chemo started and it was such a relief not to be poked every week for chemo and ct scans. my chemo is all done but i still have it cause every three months for 2 years i need a ct scan. then if all is well they will remove it. Good luck with your chemo

[eberhips]

I have had a port since the beginning of this chemo journey, as well as either neulasta(LONG ACTING) and my insurance is giving me trouble when I submit the claim. Neopogen is a shorter cheaper acting drug, often has to be given 4 days in a row to get same effects as neulasta, but bottom line is that it is much cheaper than one shot of neulasta(GIVEN IN MY ARM, NOT PORT) I have had transfusions given thru port, and of course chemo, not freaked out, don't even notice it, cept it irritates my putting on a necklace

[Hidden in reply to eberhips]

This is an old discussion... you can check the (faint) date at the top of the post. It's a good idea, as sadly not everyone who has posted on this site is still with us.

Sorry to hear about your problems with insurance. Fortunately in the UK that is one problem we do not need to deal with on top of the OC!

I've had these injections a number of times and have always self administered them - very easy after training and the first one - usually in the top of my inner thigh. I wondered whether that would be a solution for you to get them off your back?

I agree about the port being fine except for odd movements which aren't so good.