Hi everyone
I’m questioning people’s experiences of participating in this trial. No matter what Arm we are all on, it seems from reading through threads that perhaps the same things are not being provided between different PCTs.
I’m on Arm 4 of the trial. I do believe that my oncologist has given me the right treatment and am comfortable with that. However, I rarely see my oncologist. I had a 10/15 minute meeting with him half way through treatment - the meeting was delayed by 2 hours because of the number of people he was seeing. It was all very rushed and at the end he told me he had more people to see. This guy knows his stuff so I’m okay with that which is important, but … well, I’ve got my final cycle of treatment to go through but no appointment made with him. Shouldn’t it be automatic that we see our oncologists at certain points throughout treatment? How often do you see your oncologist?
My clinical trials nurse is fantastic. She follows everything up for me and I meet with her at the beginning of each cycle. She’s been a dream.
Er … am I supposed to still have a BCN? That seems to have gone by the wayside. It doesn’t matter at the moment but I’m just wondering.
I had a bone scan and liver + other organs ultrasound prior to treatment because my liver function tests produced high results. All was well. I have no node involvement … but I only got that test because my oncologist insisted and didn’t want to make mistakes. In your hospitals, are these tests done automatically?
If there are nodes involved, is testing done regardless of what the blood tests say?
How often are you examined or checked other than talking to the clinicial trials nurse? For me … never.
Basically what is the normal procedure for you when going for your chemo and how are you being followed up?
Oh, and one other thing. We have had threads before about paying for stuff when on the trial - at my hospital, all drugs have to be paid for by me.
I’d appreciate being able to compare our experiences.
Thanks
Gill
Hi Gill
I was also on TACT 2 Arm 4 (finished treatment Jan 08).
Unlike yourself, I saw my oncologist before every cycle of chemo to discuss side effects etc. On the other hand I didn’t see the clinical trial nurse once since signing the forms!
The only scan I had was an ECG before starting. No other scans offered or done.
I am now seeing my oncologist every 6 months because of taking part in the trial.
I didn’t pay for anything that I took away from the hospital, including anti-sickness, cream for sore hand & feet (Xeloda).
Best wishes.
Carol
Hiya,
I was on chemo from May to Oct last year. I was on arm 2 of the TACT 2 trial. I had a ct and bone scan prior to startig chemo. Neither of these are done routinely at my hospital (I’m being treated in Shropshire). I only got the ct scan because I had 25/28 nodes involved, and then I only got the bone scan because the ct showed ‘hot spots’ on my spine. I know people at my hosp who have had no scans at all, whereas friends being treated elsewhere have had every scan going routinely!!
As far as seeing the oncologist goes, I saw him before I started chemo then mid-way through and again at the end. I now see hime every 6 months, but he is always available should I need to see him sooner. The clinical trials nurses really looked after me, and continue to do so. I saw them everytime I went for chemo, and even now they are just at the end of the phone should I have any worries. The chemo unit I was treated in was a nurse-led unit so I had very little contact with any Dr’s during treatment.
I never paid for anything I took home from hosp after each treatment. And I was sent home with loads!!! Along with the usual anti-sickness meds I was routinely given cream for phlebitis, tabs for diarrhoea and tabs for mouth ulcers. None of which I had to pay for.
I’ll be interested to read others experiences and I’ve no doubt I’m gonna feel short changed in one way or another! I’m having a brain scan shortly to rule out brain mets as I’ve been having a few probs. Its always bothered me that I’ve never ever had a brain scan or even a full body MRI, whereas others get loads of scans.
Think this thread will show great differences in experiences!!
Take care all,
Kelly
-x-
Gill
As you know I have just had my 1st cycle on Arm 4 of the trial. Like you I have confidence in my oncologist and feel comfortable in the treatment I am being given.
With regard to seeing the oncologist, I have seen her twice, including once before my 1st chemo last week. I was told by the trials nurse that I would see her (nurse) and onc before each cycle. The trials nurse has already 'phoned to check how I am.
My BCN also 'phones every 2/3 weeks to check on me. All patients have a chest X ray and CT scan before treatment to use as a baseline (however still waiting for my CT scan as it’s awaiting repair.).
All medication I had to pay for (anti-sickness, steroids, mouthwash).
I can’t complain about my treatment so far but then again I am only just starting…
Mal
I was on arm 4 of the Tact2 trial. I saw my onc before every chemo, and still seeing him every 3 mths. I ve only seen my trial nurse twice but due to see her again in august, havent seen my BCN since DX.
I have never had any scans or Xrays only CT for rads planning. I too was node negitive. I have never paid for any drugs my hospital gave me and like kelly i would go home with loads,anti sickness,steriods, bottles of mouthwashes, creams,boxes of constipation sachets mouth lozenges,even on rads i was given creams and Hydro Gel for skin healing. i do have to pay for my perscriptions from my GP.
Isnt it strange how different areas do things differently, ummm . Dont think it is fair if you have to pay for your drugs from hospital though.
Im very happy with my hospital but do sometimes wonder if we should have a full scan at DX , i guess we just have to trust their judgement in the end.
All the best x
Hi I am on arm 3 of the trial and see both my oncologist and trial nurse before each of my cycles - I also had to go to see my oncologist 1 week after after I started on Xeloda to make sure that I was ok on it. I am also sent questionaires from the trial headquarters - have had 2 so far.
Before starting my treatment I just had a chest x ray and ecg. but maybe this was because I had an MRI before my surgery and had no node involvement?
I was examined by my onc before my first treatment but think this was just to make sure my wound was healed as it was only 5 weeks after -not been examined since.
I don’t pay for any drugs and my wig is free - the one I picked is £260 if you buy it.
I’m on Arm2.I saw the oncologist on my first visit.Had chest x-ray,liver and heart scans before starting chemo.All medication given to me at hospital is free.This has included medication for mouth ulcers,anti-sickness tablets,steroids and an arm sleeve for lymphodoema. I attend a nurse led clinic the day before chemo when I’m having my bloods done.
Hi,
I am on arm one. I saw the onc twice before starting chemo to discuss it all and see him again next week which is the mid way point when I change drugs. No idea yet what happens after that. My chemo days are when he has a clinic elsewhere so I see another doc before treatment each dose. Not sure what people on other days do. My research nurse is there waiting for me every time and I also have a big chat in an office with her before the doc, then she emails all my drug requirements to the pharmacy so ready. Absolutely everything they prescribe is free, 2 different anti-sickness, steroids, heartburn tablets, mouthwash, senokot, antibiotics just in case, plus other drugs when these did not work too well, movicol, etc. I was told that Roche pay for anything medical on this trial. My friend at the same hospital who is not on a trial has to pay for all hers. I pay if I go to the GP for a prescription. Very subsidised wig for all patients, as many as you want. No sign of BCN since going to chemo.
Tests so far have been a full body bone scan, CT scan, chest x-ray, ECG. These are routine for absolutely everybody, I had no nodes involved.
We have a 24 hour number for trial patients to call and are encouraged to call at any time or day, even Christmas Day if we are ill or worried. In office hours I can call my research nurse any time, she is brilliant and every time I have been under the weather (apart from one when no clinic) I have been able to go in same morning and be seen by one of the docs in the team. We now have our own parking, thank goodness, as very expensive.
It is a centre of excellence I understand
Lily
Hi
they also check our Ca 15 3 tumour markers each time.
hi i was on arm 3 and finished chemo last month.
i didn’t get any scans and no idea how they decide these things!
i don’t pay for drugs from the hosp - i was also told that roche were providing xeloda free for the trial - they obviously hope it will be used more widely in treatign BC.
My trials nurse pretty much disappeared after i signed the form except for beign in the room when the senior reg gave me the xeloda - lol because i ahd no side effects the apptments went, how are u… fine, hands and feet ok? yep… bowels… fine… and we were lucky to stretch it to 3 minutes!!! I saw the lovely prof grieve - the senior onc, before starting chemo, half way through and at the end.
My BCN has always rung me within a week of each round of chemo and always says if i need to see her just call and she will make apptment for me but again, because i have been well, no need.
while not all of us may need scans, it does seem v wrong to me that some people have to pay for drugs to counteract the side effects of chemo…
Jennifer
Thanks everyone for the responses. It really is interesting to see the differences we experience whilst going through the same trial.
There’s the obvious difference for some regards paying for additional drugs. What’s irked me is that on the packaging of some of my drugs is a sticker saying TACT 2 Trial …yet I pay additionally for these. Hmm … I suspect they arrive as part of the package to the hospital. To enable me to have all I want, I bought an annual pre-paid prescription card back in March which has removed any concerns about costs but I think it‘s wrong that these drugs have to be paid for in this way. I must check to see if my Xeloda is being paid for by me … I think it might be but could be wrong.
It’s interesting too to see how different hospitals manage pre-chemo scanning - good to see that Weetricia, Lily, Holly and Mal have had so many pre-chemo checks… In mine they don’t as a rule whilst in some it seems they do. Presumably some cost savings going on in some hospitals. I guess what surprises me is that there are hospitals that don’t scan despite people being node positive - that should be an automatic thing that happens in my opinion. Like Jen, I have no idea how these things are decided. I’m very surprised that Kelly didn’t automatically get a bone scan with so many nodes involved.
Interesting too about the differences regards how we‘re supported and who we see. For some it seems the clinical trials nurse is in the background whilst for others this is the main point of contact. In my own hospital, the oncologist has delegated everything to the clinical trials nurse more or less. I’m amazed at the level of differences. I’m reading some of the comments here and am very impressed that so much support is given. Mal, Holly and Lily, your hospitals seem to have some very good procedures in place for your care (others may have too … I’m only responding here to the comments made).
Holly, I remember you mentioning questionnaires on another thread. I’ve never seen one and thought they’d stopped. And you got a free wig?? Wow!
Kelly, good luck with your brain scan - fingers crossed for you.
Carol - you got cream for your hands and feet? Even with paying for my medication I’ve never been offered anything like that. I’ve bought my own cream online, although I have got some Vitamin B6 tablets.
Lindiloo, I notice you’re seeing your Onc every 3 months … seems for others it’s 6. Another difference. I wonder what the trial recommends?
I’m guessing that from a clinical trials point of view, how we’re supported throughout treatment doesn’t matter - it’s the results of our treatment they’re after. This is fascinating though ….!!
Thanks again
Gill