Really the stress of going every 3 weeks is getting to me coupled with nurses finding it difficult to get vein now. Indeed this time they got a vein and then nurse was pulling leads and machine to position with it attached to my arm and nearly yanked it out and caused me a great deal of pain and no apology. Not sure if I can continue like this. And I do not want to have a line. I have had 8 so far and been told it only makes a 7% difference. I do not understand this as all the info on Herceptin said it gave an extra 50%. What is others experience.
Hi Starfish,
Sorry you are feeling fed up! The treatment you are talking about is Taxol I assume. I have just started and only just had my 2nd one so I can imagine what you must feel like. Like you I have a problem with my veins, so have decided to have a portacath put in (I know you say you don’t want one, but I think it would make life a lot more easier, but obviously it is everyones choice). When you say only 7% difference do you mean shrinkage of the tumour, sorry to sound stupid.
Anyway take care, keep battling on you will get there you are nearly half way there.
DebsHx
I am sorry that you are feeling fed up about the herceptin.
I hung in for the full 18, but it does get more difficult unfortunately.
There is a mathematical explanation for why herceptin can be said to make a 50% difference or a difference 7-8 per cent of the time. In many of the trials, recurrence was reduced roughly by half (a 50% reduction in recurrence) but only about 15% of women without herceptin had a recurrence, so it only made a difference in about 7-8 per cent of cases. However, these results were announced several years ago, often without a lengthy period of followup.
You might want to discuss your treatment with your oncologist, in light of some of the news that came out at a big oncology conference in Switzerland a few weeks ago. They updated the trial results for the HERA trial in which herceptin was given only after chemo and the reduction in recurrence at 4 years was down to 25%. It is still unquestionable that herceptin is buying patients time, but less clear that using herceptin only after chemo is quite the major lifesaver it seemed like back in 2005.
If you had herceptin administered with a taxane, you might want to discuss with your oncologist the possible implications of the FinHer trial, also update the week before last, which suggests that if herceptin is administered at the same time as a taxane, it may not be necessary to administer herceptin afterwards to halve recurrence.
There is a real question, too, about whether the full year of herceptin is necessary. There is even a trial, the Persephone trial, which is testing six months of herceptin against a full year, so some oncologists must think that six months is enough or else the trial wouldn’t have made it through the ethical review process. Personally I think that the evidence for only using herceptin for a short term is much stronger if herceptin has been administered at the same time as a taxane (taxol or taxotere) because of the five-year followup of the relatively small FinHer trial.
Hi Christine
I did have my last 2 out of 4 taxotere with Herceptin. As I had read that in America they believed it increased the efficacy and also I believe they are routinely doing this in Europe for those who are HER2 but not heard of it much over here.
The trouble is if you ask if it is necessary to have all treatments emotional blackmail seems to be used in that you are made to feel that if you do not have the recommended treatment then there is a high chance of it coming back. I was Grade 2 with 6/21 positive lymph nodes as well as being HER2. I asked onc what difference being Grade 2 made and he said not a lot given lymph node involvement so I feel coupled with being HER2 I have always been made to feel my long term chances are not good. So I take everything.
Oh, that is difficult. If you had had three taxoteres with herceptin and FEC then Finher would fit, although it is small, but with only two it is difficult to say.
6/21 isn’t brilliant, but I had 8/19 and am still around over five years later, despite only getting sequential herceptin. Under your circumstances, a halving of the recurrence would be more than 7 percentage points, but I couldn’t guess how much. My oncologist refused to discuss stats with me. When the first HERA stats came out, the reduction in recurrence was much greater for grade 2 than grade 3, but I don’t know whether that is still the case.
If it is really getting unbearable for you, I would talk to the main oncologist (I don’t know what it is like where you are, but where I was there was one big cheese oncologist and a bevvy of young oncologists under him). You would have to talk to the main oncologist, since the others may not even be that aware of the latest results from the big Swiss conference at St. Gallen.
Best wishes,
Christine
Encouraged to hear you had a similar amount of lymph nodes and still ok after five years. Thats what I hope for and why i am and have taken all treatment.
Interesting that HERA showed less recurrence for Grade 2 than Grade 3. From what I can see once you have positive lymph nodes and are HER2 they seem to give all the treatment regardless of grade. I was told they are throwing everything at me. I guess they do not definitely know what works and what doesnt so if you can take it they will give it. Its as simple as that.
I totally know where you are coming from. I had the standard six FEC pre-op (didn’t work), a mastectomy, four taxotere and then an extended fight to get herceptin, even though I was paying for it out of my own pocket at first. It would be really nice if they would get this treatment sorted to something reasonable.
I guess the reason that I have paid so much attention to FinHer is that it caught my eye as something safe and reasonable, although it is only in trials in the UK (a very good trial, the SOLD trial).
Anyway, it is possible to survive a year of herceptin and even make the five year mark. I was my oncologist’s highest risk patient.
At any rate, I have to leave it at this. My husband’s department and mine have both run in to difficulty, especially his, so it is really nose to the grindstone time. We have savings, but I just really need to be there for him right now. I’ll come back the next time when new Finher/SOLD or HERA results are out in a few years maybe.
Hi Starfish
I finished 18 herceptin xmas eve 08 (grade 3, 7/21 nodes, 3 x fec 3 x tax)i had a bit of trouble with veins between 10th -13th herceptin but after that they seemed to recover again, my main problem is joint and muscle pain in my legs especially at night and first thing in the morning, i was expecting to feel better long before now but my onc told me that chemo + herceptin effects us all differently, some worse than others and that it can take some months even years to get back to full fitness, i don’t really know about stats i was happy to take anything going to hopefully beat bc but at the moment still feel cr*p alot of the time but hope it will be worth it, good luck to you in what ever you decide with the herceptin
Mizzy xxx
Hi Starfish,
I guess I was lucky, I had Herceptin at home at my convenience. Not private, just how its done here in Notts. I do have a port because my veins are not accessible. Give me the port any day. I was nearly put off chemo the second time round because I had such a bad time with the injections into the back of my hand ( they used the back of my thumb at one stage, now thats pain!
I think if you have gone this far then try to stick with it, I have felt so much better, even if only psycologically knowing I have had this extra treatment.
Cheers
Carol
hi too was like you… i contacted healthcare at home and found out everyone is entitled to have it at home at no extra cost… you just have to get consultant to agree. healthcare at home did all the work for me it took till no 3 to get it organised as i was first to ask for it from my hospital go for it. where are you.
Hi,
I am HER2 positive and my treatment plan is 3 X FEC, 3 x Taxotere but with Herceptin starting same time as Tax no 2, so here in West Mids they are already doing the simultaneous approach.
I have also volunteered for the big Persephone trial (4,000 patients), which will mean either 6 or 12 months of Herceptin depending which group I am randomised into. Having read up on the preceding trials, I would dearly love to be in the 6 month group, as the second half of the year seems to carry most of the side effects, but that’s in the lap of the gods at present.
I was also told that the 10 year stats re Herceptin are still difficult to quantify, simply because it has not been in general use in UK for that many years yet. However, I’m content to grab whatever they want to throw at me to extend my life span: an extra 7% would be great 'cos my stats need all the help they can get.
Love to all
Rosie