Herceptin thread

[Rollercoaster]

Hi Lilyboo, how are you today?

We had a great time in Dublin, just shattered when we got back though and now our house alarm has started ringing at random times, 5 times last night! Really helpful - not! My treatment is mostly at Kettering but rads were at Northampton, not too far from home for me but travelling to rads every day is still tiring, it's the routine for a few weeks but then it's done. Sounds like you've done really well, not suffered too much with the ses of chemo, hope you can keep going the same with the herceptin, it is easier though you're always looking out for the possibility of the ses from it.

My hair is coming back everywhere apart from armpits, no problem there! On my head it's about an inch all over although some bits are longer than others, it's quite thick too so we're getting there, I haven't worn my wig since end of January, feels so much easier once you get your head around it and people get used to seeing it really short.

Re the travel insurance, we went with Staysure in the end, they offered the best deal and include lots of conditions as standard. We got annual insurance for both of us to Europe for under £200, a lot but compared to a lot of others, cheap.

Must go now, visitors coming soon, have a good day and take care, xxx

[Lilyboo]

Thanks for the tips about the regular creaming of the area with rads.  Yes got 15 regular rads then 4 boosters so 4 weeks worth in total and yes on the right side. Surgery, chemo, herceptin and heart echoes in Winchester and rads in Southampton, both about 10 miles from home. Chemo ok had E Mend from the start just feel generally tired and yuk 1st couple of days and then gradually better over next 4 or 5 days, then almost normal, just get more tired than usual.  Know I have been really lucky though.  Oh yes and 1st few days my sleep pattern is a bit of a mess, like now, I think its the steroids they give you for the 3 days after.  You sound as if you have done brilliantly, and at least now you can get back on with your life, every 3 weeks for the herceptin isn't too bad by the sounds of it? 

Haven't looked at travel insurance yet, but its great your getting out to Dublin, have a super time, I do hope the weather is good.

Where is your hospital?  Hair, eyelashes, eyebrows growing back ok?

And most important did you have a good trip to Dublin?

Hugs x

[Rollercoaster]

Hi Lilyboo, you had an early start today! It sounds like you have more to get thru than I do but it's getting more condensed for you, getting things fixed on the same days must be easier and cheaper. Do you have far to travel to your hospitals? How have you managed on the chemo? I was really sick on the first round but then went on Emend and was ok after that except the normal lack of energy and stuff like that. Rads is a doddle in comparison, the nurses are lovely there and as long as you realise it will make you tired, mainly because its daily and wearing, and keep on creaming the area concerned you'll be fine. Do you have 15 sessions or more? I was told to cream 2 or 3 times a day but I got in the habit of doing it at each mealtime and at bedtime so never got sore atall, just a little itchy after I finished but keep creaming for a couple of weeks and you should be ok. Aqueous cream was recommended, I got a big tub in tescos and used most of it. My onc said that because my lump was on the left side I couldn't have rads and herceptin at the same time because of the risk to my heart so mines all been a bit prolonged, I was diagnosed in June and had surgery July 5th then started chemo on August 19th, finished Dec 2nd then rads were Jan 6th to 24th, anyway they're done, hurrah.

I had my second herceptin on Monday 3rd March, it was better but still on cannulas as my hospital doesn't do the injection form yet, not really sure about injections in the belly anyway as I had them thru chemo, the GCSF ones to boost the neutrophils, and they gave me a hard time, wiped me out as much as the chemo did! Yes overall, herceptin is much easier as long as the echoes etc keep going ok we'll get there. Like you I'm looking forward to this time next year when it's all done although you're having Tamoxifen thats in tablets isn't it? Btw, have you tried to get travel insurance yet? Its a bit of an ouch. Well I'd better make a move, have a few things to do today as we're off to Dublin tomorrow for a couple of days to visit my nephew. Take care, hope your ses aren't too bad this week, sending hugs xxx

[Lilyboo]

Hi Rollercoaster.  Had my 5th FEC on Wednesday so only 1 more to go on 26th March yipee!! Have my tattoo's done for the rads earlier that day then start rads 7th April daily till 1st May. Your so ahead of me, how did your rads go?  So my loading dose of herceptin is on the same day as my rads 17th April, 2 different hospitals, so should be fun. Herceptin at 8.30am then rads at 3pm, going straight from one to the other. My herceptin is by injection so my picc line is coming out on the 26th March.  The oncologist assures me the herceptin is a walk in the park after all the other treatment, I hope he's right, guess Im lucky they can do the echoes the same day apparently.

To be honest since I was diagnosed early November I have been wishing for time to just hurry away till end of chemo, so feel I can get on with my life and make plans while on herceptin its not so invasive (I hope).  And yes we are lucky a few years back it was not available and it really gives us the best chance.  I will be starting Tamoxifen about the same time too.  Have to hope that goes OK too!!

You must have had your 2nd herceptin now, was that better?  Any side effects?  Can you transfer to injections if you want?  Hope all is going well?

Thanks Lol for the reassurance

x

[Rollercoaster]

Hi Lilyboo and thanks for your reply.

I had FEC X 6 too which I finished 2nd December and then had 15 rads sessions thru January, then had 1st Herceptin on 10th Feb. On the day my BP was a bit erratic but they put that down to white coat syndrome and I felt a bit queasy for a while but the worst part was the time scale. I was booked for 9am but they hadn't prepared my drip so i didn't actually start treatment until 11am then because it was the loading dose I had to be 6 hours from the start so it was 5pm before I could leave. It was ok and they were lovely but it was tiring and boring, take plenty to keep you busy would be my advice.

Do you have a picc line or are you on cannulas? True herceptin, so far anyway, is easier than chemo, it's just that you can't really move on till it's over and they keep you going for echo grams and blood tests and onc visits and somehow they manage to get them all on different days so I feel like I need a season ticket for the car park! I must remind myself that we're lucky to have the treatment available, it will soon pass. Hope you're doing ok as you wait to start. Hopefully we will get a few more ladies on herceptin to join us here.

Thanks also to Lol for the reassurance, it's always good to hear from someone who has already been there. Hope you enjoy getting back to normal life and all goes ok for you. One thing about going through all this is it gives you much more empathy for other people especially those in the same situation. Take care everybody x

[lollol01]

Hi

Just thought I would drop in and wish you all well as you start your journey with Herceptin. I have just finished my 18th and must say compared to everything else we have all been thru Herceptin is sooo much easier. Just a little bit daunting as it seems to take so long but actually time does fly. I only seemed to get a bit tired on the day and as time went on a bit of a drippy nose like you get with hayfever. Good luck to you all and I will try to pop by every now and then to see how your doing.

Lol

[Lilyboo]

Hi.  I would love to be on a herceptin thread.  I finish my chemo on 26/3 which is 6 x FEC start herceptin 16/4.

[Rollercoaster]

Hi all, was just wondering if there's a herceptin thread running anywhere as most of my group have finished their treatment and it's gone really quiet, but me and 1 or 2 others are still battling our way through herceptin. I've just done number 2 of 18, is anyone else out there?