I was given a bit of a dilemma today and can’t work out what to do for the best.
My veins are shot to pieces and as a result I couldn’t have my herceptin treatment on Friday (I’ve had 4). The consultant said I could have a hickman line put in or i could consider stopping herceptin. I was shocked because I always thought they’d never suggest stopping. She said that statistically if I stayed on herceptin til next May I would have a 92% chance of no recurrence over 10 years, if I stop herceptin now, this would reduce by 7% taking me to 85%. She did say however that this figure was understated because of my age 40 and that they usually find complications with younger patients. I’ve already had surgery, chemo, rads and ovaries removed, am on arimidex and herceptin every three weeks.
I asked whether my heart was been affected - it had dropped from an initial reading of 69, down to 52. She said that she the readings can be unreliable so is sending me for another heart scan to check.
I am wondering if the herceptin only gives me 7% and is affecting my heart, is it worth all teh trouble of continuing and having a hickman line put in?
I keep thinking I won’t bother continuing treatment but then I feel a wave of fear about not having all the treatment on offer. I do think the figures are high anyway, so do I put myself through more treatmetn. I hate the idea of a hickman line because I@d love to travel again and feel more free, but at the same time I also think if I’m to continue, I can’t go on with the extremely painful digging for veins scenario like we had on Friday, it was agony!
So what do I do, what would you do, is 85% high enough, do I go for the extra 7% reassurance and have a hickman line and keep the heart monitored…
Decisions decisions… if there’s anyone in my situation I’d really appreciate any advice as I’m at a total loss. THeree is something so tempting about stopping treatment… but am I brave (or daft) enough!
I finished heceptin just over a year ago and veins were dreadful towards the end, they did want to put a hickman in me but i persuaded them away form it as was already 3/4 through and Onc gave me her backing, think it was more the chemo nurses as it would take them ages.
Personally think if I was in you position though with only 4 down then I would give it a try.
I have read on here that some trials aren’t going for the full 18 doses, cant remember exact amount but I do think its more than 4, might be worth giving it a go to get a few more treatments and do some research.
Only you can make the decision but when I started herceptin woman were still taking HA’s to court to get the magic treatment (mine included) so I was pretty grateful to be getting it 6 months prior to NICE approval and the effort by my Onc to get special funding from the board.
I do understand what you mean about hating the idea of a line. I refused to have a port or line as I really hated the idea of both. I struggled through chemo with the nurses taking several painful attempts to put the cannula in each time but I told them that I preferred to put up with that rather than having a port or line. I was lucky because my veins recovered fairly quickly after chemo and I managed my whole year of Herceptin still with just a cannula and by my third Herceptin they were managing to get it in it first or second attempt each time.
But if my veins hadn’t recovered I would definitely have asked for a port or for a line so that I could complete the year of Herceptin. I believe the 7% is worth it.
I believe it is worth it too. My veins are terrible and on a few occasions my treatment had to be aborted and done on another day - my oncologist will only approve a line if there is absolutely no other option. They even said to the nurses to use my feet if that was the only option, but I tried it once and never again, too sore. I had already decided I would never have a line, but if there was nothing else available to me I would have given in.
I wouldn’t worry about a score of 52 as this is within the score limits. I veered from about 52 to 68 all the way through the treatment.
I had a hickman line for four months as my veins with wrecked after first lot of chemo and then I fell ill etc…
Anyway it was a god send whilst having 6 x taxotere and 7 x herceptin.
I did have it removed two weeks ago as my veins were repaired and good enough to finish the herceptin which I have 10 left.
I had no: 9 today and they found a vein 1st time with no problems.
If you have ahickman line it does not mean you have to have it for the full treatment, just whilst your veins are healing!
It was easy with the hickman line and I have no regrets. But wanted it removed after chemo finished as I am goin on hols soon a
and wanted to enjoy the sun. sand & sea without any worries…
I hope this helps.
If you have any other questions I dont mind trying to answer them
In addition to the valuable information and advice you have received from your fellow forum users you are very welcome to speak to one of our specialist nurses, they can offer you further information and a ‘listening ear’ which may help you to make this decision which you are finding understandably difficult. The line is open Mon-Fri 9am-5pm and Sat 9am-2pm on 0808 800 6000.
I have a portacath, its easy when I have chemo and herceptin, no problems and very straightforward. I’ve learned to live with it, its not uncomfortable now and if it enables me to have the full treatment on offer, then I am glad I have it.
I have dreadful veins and had a line for chemo but have resisted for Herceptin. I have had 13 so far and most have been in a vein inside my elbow. That vein seems to be ok so far. I have had agreement that if all else fails I will get a portacath as that won’t impact on my every day life like a line did.
All said and done though I really want to have all of my Herceptin, paticularly as I had to give up chemo after 4 as I had extremely serious side sffects.
Good luck with your decision
Anne
I often had to have my treatment into the vein on the inside of my wrist or between my knuckles. A little bit uncomfortable due to the lack of flesh in those places and I used to have really bad bruises.
Hi everyone and thanks so much for your comments, I can’t tell you how valuable they are.
I understand the line will make it much easier to administer the drugs as believe me, after 5 painful attempts on friday, anything’s got to be better. I alsways have to use the tiny veins in the wrist as my veins in my hand have disappeared a long time ago. We have no usuable veins in the elbow or arm. So… I guess it will have to be a line.
I am still tryng to get my head around them saying i could stop treatment if need be. Would anyone be tempted to lose 7%. I mean 85% is still good enough odds right? I have had the whole shebang of treatment, surgery, chemo, rads, arimidex, ovaries removed and 4 herceptins… there is something so tempting in saying ‘that’s it’, let’s call it a day. I just wonder because I think if this horrid thing is going to come back, i do feel it will come back anyway irrespective of whether i finish this herceptin.
I WISH I COULD MAKE MY MIND UP! I’m due at the hosp tomorrow for treatment, they are going to put it into my surgery arm! I just don’t knwo waht to do, and know i’m going t be up all night wondering about this.
Hi,
I think most people who have had one would say don’t panic about having a central line of some kind and that once it was done it was a relief to avoid the vein digging. Just a question - are you able to travel anyway? I understand that insurance is very expensive after BC and not sure how easy it would be to get covered during treatment. What I mean is, the line comes out after treatment anyway so as soon as you are finished you can travel. I have a port, which is totally buried under my skin with no need for flushing, covering, etc I just carry on as usual. The only thing different is that the drugs go in my chest instead of my arm. This might be anoother option to ask about.
Good luck with your decision
Lily x
Hi again,
sorry our posts crossed. You need to think how will I feel if I stop now and it comes back and I have to start chemo all over again? Not forgetting what a different situation a recurrence is. Out of 100 women you say 85 would be ok. That would mean 15 in that group would be unlucky. Balance that with a room of 100 women and 92 would be ok. Which group do you want to be in?
Hope this helps, I didn’t mean to make you more confused. I would do it for 7% myslf
Big hug for tomorrow
Lily x
Thanks for that comment. I guess I feel as if I am being over treated really, this comment was made to me by my onc. I don’t mean I am not grateful for all that is offered because I am, it’s just that… i am so fed up of this disease right now and I’m coming up to a year since diagnosis and I really desperately just want my life back. I would like to go to australia where my friend practices healing. She lives in Byron Bay which is full of healing practitioners of all kinds. I feel as if I have given myself a huge chance of living a full life because of all the treatment I have already have, maybe I could jsut now be kind to my body, let it heal after all this treatment, let it have lots of other types of healing, more gentle, less invasive.I feel that my veins refusing treatment might be my body telling me it’s had enough, to leave it alone now, try other methods. I hate acting out of fear of what might be, i.e. making a decision to continue purely becuase i’m too scared of the alternative. i want to feel stronger, say ‘no, sod you cancer, i am not letting you do this to me for one more day’! I think out of a room of 85 people without cancer, i would be in the 85, it’s a huge figure isn’t it! It’s easy to dwell on the tiny minority figure, but why not dwell on the big figure instead! I realise I am trying to talk myself into walking away from treatment, I guess I am just trying to find others that might have the same mind set as me. I don’t want to feel as if I am going mad, which I do right now! I discussed it with my parents, mother said ‘please continue’, father said, he wouldn’t if it was him. I am so fed up of forever been at that hospital, every other week, for tests, heart scans, herceptins, clinic appointments! I jsut want it all to finish now. So yes, I can see why anyone would say take your chances from 85 to 92%, but similarly I just think… I’ll be OK, the cancer will come back, or it won’t, irrespective of what decision i make now. Aaargh!! I so hate having to make decisions like this!
Don’t forget that all these treatments work in different ways and one treatment may well be more effective than another.
I’ve read quite a lot about HER2 + cancer and I believe that Herceptin may be the most effective of all the currently available treatments for that particular type of BC . I would most certainly do it for 7%.
Hi,
I can tell from your last post that you have actually put a lot of thought into your decision, so I would like to support your decision, either way. I understand that next May seems like a very long time but not such a huge part of your whole life possibly. I seem to remember that herceptin can only be given within a certain time limit of chemo so I think I would ask the onc whether you could be given it in the future. It would be a bigger decision if you are giving up your only chance of this very successful drug. It is not long ago that women were having to fight to get it. I think I might also ask the onc what she would do if it was her/her daughter. If on the other hand you have already made up your mind, you need to go forward with your decision and stick to it or you still won’t get the peace you want. Spiritual healing can be done across distances without you even knowing, if you believe in it.
lots of luck and keep us posted. Do check first that you can get insurance to go though.
Lily x
Aww Carrie - I can completely understand where you are coming from. I wish you all the best with whatever decision you finally make - you certainly sound as though you are making a carefully thought out, informed decision.
for what it’s worth … my chemo was cut short by a session but the onc knew he was over-prescibing initially as I am a triple negger and as I’m quite young he wanted to do belt and braces - so he had a margin to play with - I hope!!!
If it was just a question of the line then I would have it in - they can always take it out later
For me the bigger thing is the effect on the heart - you need more info about this - not much point in curing one problem to create another
Hi Carrie
a bit late finding this thread so maybe you are already at hospital having your treatment. I look on with envy when I go for treatment at the people with a line in my veins are in a crap condition nurses run and hide only the slow or the brave are left not sure which. Last week I sat next to a guy who also has poor veins it took 13 goes before they got in. I promised never to complain again, I will try and keep my promise but think I may fail!
Good luck and I hope you are able to carry on with your treatment.
My only advice for anyone in your postition is if you stopped and it came back how would you feel about stopping early.
That is the question you have to ask yourself I understand your dilemma My veins were shot after 4 epi’s and have still got 8 CMF to go but I couldnt take any more pain and had hickman line in don’t get me wrong it wasnt all plain sailing quite painful to get in as i didnt have any anethsetic but it’s been a god send.
thanks to all you wonderful ladies that took the time to reply to my dilemma. i still haven’t decided what to do. i postponed treatment until thursday. they say they are going to give me herceptin on thursday come what may, possibly by using my surgery arm!!! anyone had to use their surgery arm? I’m dreading any complications regarding that.
i am thinking possibly of having a line put in and maybe having a further 4 treatments or so and then reviewing the situation depending on the heart situation. i think it’s interesting the lady that said that they are trialing lower doses for herceptin at the moment. i mean, i know it must be 18 for a reason but it seems such a long haul getting through them. i figure maybe 10 will be beneficial. i guess i am thinking that if the doctors are giving me the option of giving up, they can’t be too alarmed by that can they!! otherwise why give me that decision, in many ways i wish they hadn’t said that, i wished they made all the decisions and advised me what’s best.
anyone with a line in, did you get taught to flush it yourself. i hate the idea of being tied to the doctors/hospital on a weekly basis as i like to get around these days and dont’ want to be constantly having to go back to docs.
thanks again for advice, i wish i was brave and had the courage to go my own way now, sadly i don’t think i am and i don’t think my mother or sister would give me a break if i decided to quit early! xx