Still stable

[Neona]

Got back from a most wonderful cruise on Friday and then to the hospital. My scan results showed stable disease again after second scan on the Patriot trial - the drug AZD 6738. Very relieved as thought I had a new lump in my side. However I didn't get my infusions as the nurses couldn't get a cannula in - this has become a big problem and I have begged for a port and can't understand why they are so reluctant to let me have one. Could it be expense?

[Seasun36-uk]

Hi Neona. So glad you had a good holiday!

I don’t think it’s expense (I could be wrong?). Ports can be problematic with infections &/or clots. Have you had problems with these or have you got raised BP? Ask them next time. Some ladies get on very well with ports.

Linda xx

[Neona in reply to Seasun36-uk]

Hi Linda, I've never had a port or a line. I no longer have a spleen but am on penecillin for life and blood thinners for life - the doctor seemed to think that an infusion every 2 weeks was not enough to justify a port. But then I didn't get the infusion and went home with low magnesium and dehydration uncorrectec - doesn't make sense to me.

[lorraine71-Australia]

Hi Neona, I would ask for a reason that they have not offered the port I've had mine now for over 2 years with no problems, through I have read ladies have had a infection if I had to have mine out I would won't an other one.

After all the chemo my veins are non existent still have to have blood test my perfoligest will not take blood from the port,I make sure I drink plenty of water this does help a little.

Good news your still stable Take care Lorraine xx

[Neona in reply to lorraine71-Australia]

Thanks Lorraine, do you know why they don't take blood through the port?

[Kryssy]

Great news being stable still. Lovely feeling. Well done. Had that feeling in January but very short lived.

My port went in before chemo started. It's standard practice here for anyone who has to have routine drugs. The problem with the NHS is I don't think all nurses are trained how to use it which is such a shame as I've watched two new chemo nurses learn on me in an instant and after a few patients they are experts on their own.

Long may your stability continue xxxx

[Neona in reply to Kryssy]

Yes it would seem easier for the nurses than fighting with terrified patients to get a cannula in- can't understand why they are not trained in something so simple. I hope you get to stable again soon- I had convinced myself that the drugs had stopped working. The doctor said most people had stayed on the trial for about a year and I am on the fifth month now, Wendy

[Purple-iris]

Glad you had a great time on your cruise and fantastic news that your disease is stable on the trial . Long may it continue .

Hope they sort out your infusion and problem with veins . I know how stressful this can be as had many problems with my first line chemo and year on Avastin and often needed 4 or 5 attempts with different nurses to get the line in . Sometimes took 2 or 3 hours for a 30 minute Avastin !

As others have said probably a combination of expense and lack of trained nurses but also think they are reluctant as increased risk of infection too, esp if on a trial and closely monitoring all side effects .

Stay well and hope you have another trip or treat planned soon .

Love and best wishes Kim x 💜

[Neona in reply to Purple-iris]

Thanks Kim- the holiday did me the world of good and I was almost like my old self apart from the exhaustion. Back on the pills today though, Wendy

[Katiebairdie]

Welcome home and good new as well.

I have asked about a port in my chemo ward and was told Bucks don’t offer them because they are too expensive. The nurse said it could be privately funded. No idea how much that would be.

[Neona in reply to Katiebairdie]

Thanks I'll have a look intl it, Wendy

[Lyndy]

Great stuff Neona! Hope you enjoyed your time away xx

[Neona in reply to Lyndy]

Thanks it was really great!

[Tesla_7US]

I have had a power port-a-cath for over three and a half years and never had a single problem with it! I love it. No pain, no poking, no jabbing. I can shower, bathe, swim with it. I forget it's there! I am in US and ports are standard of care here. They require a trained surgeon to implant them and trained technicians to access them. I believe cost of installation is the first problem and cost of training and staffing of nurses to access them is the rest of the problem. This is unfortunate because cannulas are a cruel way to deliver treatment to cancer patients. I am sure I've offended someone with these comments, but it breaks my heart to read about patients being poked and jabbed until their veins collapse.

[Neona in reply to Tesla_7US]

I agree that cannulas are very cruel- I am in tears everytime and they often don't work after all the stress of having them put in. Infusions are delayed while diffetent nurses try so it can hardly be cost effective - I was at the hospital all day yesterday and returned home without the treatment. I can't believe that the nurses in a Research Facility aren't trained in this.

[Tesla_7US in reply to Neona]

Again, I am certain to offend someone here, but this kind of abusive treatment is considered incompetent. Cannulas simply are not used on cancer patients in the US. That kind of treatment would get people fired from their jobs.

[Neona in reply to Tesla_7US]

This is very interesting! Think I will mention it to the doctor - but then it is all about money here even though it is a false economy.

[Tesla_7US in reply to Neona]

The Hippocratic Oath states "First, do no harm." Gouging your arm whilst searching for viable veins is simply not an acceptable practice in US. It's another layer of misery added to an already miserable diagnosis.

[Neona in reply to Tesla_7US]

I totally agree!

[Ge0rg1na in reply to Neona]

I'm being treated in a London teaching hospital and the nurses there are adept at accessing my veins via the super port. I would have it again as it cuts out the cannula nonsense! In Cambridge, another teaching hospital, the nurses were't as well trained so I went to the Vascular Access dept first as they were the ones who fitted it in the first place. Ultimately it's volume and demand of patients that provide the nurses with the experience. I wish you good luck and hope you can teach them a lesson!! Gx

[Neona in reply to Ge0rg1na]

Do they take a blood test through the port please?

[Ge0rg1na in reply to Neona]

Yes, they do! It's a no brainer, isn't it?

[Neona in reply to Ge0rg1na]

Yes indeed.

[Solange]

So pleased for you that you are stable. I have very bad, tiny wiggly veins. Not always TOO awful getting blood but hopeless for getting the cannula in for the CT Scan dye. The IV Team are always 'ordered' for me nowadays when my Scan appointment is booked. For three different scans it proved to be impossible but last two times they've managed. They say they want to run a mile when they see me!

Have you thought of asking for a picc line? I've had one, the Chemo line before last. It's a bit of a faff but the Chemo nurses love it as it speeds things up for them. The last line of chemo I didn't have one and each session was a nightmare, finding a vein with incredible long lasting bruises. I'm relieved that I'm to be allowed another piccline this time. Have to admit I thought it was to do with hospital finances, not being allowed one, last time, as our hospital is, or was, (not sure whether they still are) in 'Special Measures'. Anyway, Good luck, Neona. Love, Solange 😊

[Neona in reply to Solange]

Thanks Solange, well they are more keen on a picc line but I'm not keen as I hate the idea of it and don't know how I would get down to the surgery to have it flushed when I am sick on the treatment- though anything would be better than the fortnightly terror I am going through at the moment!

[Solange in reply to Neona]

I see what you mean - about the flushing. I think I was very lucky when I had one previously. I was just told that the Community Nurses will come to flush it weekly and also, take blood the day before Chemo. I think the rules have now changed, though ☹️

I struggled for a while with wrapping cling around my arm before showering as the chemo nurses advised. Went on holiday, having had it arranged that I could have it flushed at the nearest hospital while away, and they gave me a waterproof sleeve. They were surprised that my own hospital didn't give me one, or at least tell me there were such things so I could buy one.

Hope you do get your Port. Could you maybe ask for it not just for your bad veins but for psychological reasons, too. Say, perhaps that the fear takes over your every thought, or something similar? Good Luck. Xxx

[Neona in reply to Solange]

Yes I have told rhem how stressed I am- I think I will phone them and press the point in case they are not doing anything about it again!

[Solange in reply to Neona]

Good, sometimes you just have to chase them up. Xx😊

[January-2016-UK]

Great you enjoyed your cruise and stable is really good news.

Might be an idea to ask why a port is not offered. Hope you get it sorted.

All the best!

[Neona in reply to January-2016-UK]

The reason they gave was that I would not use it enough- well every fortnight seems a lot to me with a scan every 8 weeks needing an even bigger cannula!

[Naimish]

Hi Neona, reckon its all about money. Else how on earth would they know that the port will get infected until its implanted and used.

Naimish

[Neona in reply to Naimish]

Hi Naimish, I think it is about money too but it is a false economy when treatment is delayed, or in my case, abandoned because so much time was wasted trying to get a cannula to work.

[Maus123]

Stable is good. Glad the trial is working.

Hm would be a pity if expense was the reason for not offering you a portacath. If one can believe the internet, those ports cost around a couple of hundred GBP a piece (mine costs around 500 Euro), plus the cost for the surgery to implant it.

As long as it gets flushed every few weeks and you take care with hygiene after it's been pierced (e.g. cover with sterile band aid for at least 24 hrs before getting it wet, after chemo), it should be fine. I'm such a wuss, I even put an emla plaster on the port on chemo morning.. so I don't feel the quick needle stab at all. Works like a charm. A port is standard - even on state insurance - for chemo, here in Germany.

But even when I was still in the UK, a port was considered reasonable and the Royal Marsden in London was prepared to put on in prior to chemo. That said, I had private insurance... maybe that makes a difference? Believe there are a few ladies on the NHS who also have a port though, in this forum...

But yeah.. that's of no use to you if your chemo ward doesn't have staff trained to use ports, or just generally doesn't offer this option. What a bummer. Maybe a PICC line is the least of two evils in that case? Or do you have another hospital/chemo ward nearby where they could a) implant a port and b) use it for administering chemo?

I'd seriously consider another chemo ward, if I could have a port there. Don't give up yet and fingers crossed you can get one.

BTW: Mine is not used to draw blood either. That still happens via arm vein.

All the best. Maus

[Neona in reply to Maus123]

I am at the UCLH Research Facility and am sure they can do it. I've given it another push so we'll see what happens- I'm living in terror of going up there just because of the cannulas.

[Naimish in reply to Neona]

Hi. Ref to.Maus..... the chemo port that I'm ref to is implanted subcutaneously and hence gets embedded below the skin. Administering chemo becomes that much easier since its only a puncture , like an injection into the port..... there are no openings to take care of, nothing. One can shower etc etc , no issues.

Naimish

[Ge0rg1na in reply to Neona]

Get them to make an appointment with the team on the 4th Floor, in the Macmillan Centre in Huntley St. That's where I go to access my superport and it's very near Tottenham Court Rd.. They take the bloods and leave the access connections in for the chemo nurses to use later in the day. I'm on a trial too but not in the Research Facility. You might have a medical reason for not having one but then they should tell you what that is. Gina xx

[Neona in reply to Ge0rg1na]

Thanks for this info. I thought it might be because I don't have a spleen and the risk of infection but the only reason the doctor gave for reluctance was that I won't use it often enough- I think every 2 weeks is a lot. I will phone tnem tomorrow and see if they are doing anything about it.

[Jessica-DianeB]

GS you are still stable. Just keep pushing on the port. Or ask for a picc line xxx