Anyone from Leicester. Having Herceptin at the LRI anyone like to get in touch?
Hi Judka
I’m also having herceptin at the LRI at the moment, just had 4th one last week. How are you getting on with it? Have you had any side effects? I’m ok so far, just a bit creaky in the joints, but then I was already slightly creaky anyway! I just find it a bit of a pain having to troop to the hospital every 3 weeks for year - still I shouldn’t moan really its good that I am able to have the treatment and always have a little thank you to myself to those women who fought the good fight so we all could have it.
Let me know how you are getting on - I know they have just changed the clinics at the LRI so we don’t all go on Wednesday anymore, and apparently they tell me it may be different each time (which is also a pain), but at the moment my next one is on a Thursday - what day is yours?
Anyway, take care.
Fluffybunnny xxxx
Hi fluffybunny so nice you got in touch. I have had 11 doses of Herceptin so far. I am usually fine with it, no problems but last Tuesday I was given infusion over a shorter period (half an hour) and didn’t get on with it at all. The cannula was very painful in my hand, so I am going to see if I can go back to the hour and a half next time. Also my day has changed to Friday next time. If days keep changing then maybe one day we will meet up.
Take care
Judy x
Hi Judy
I was there this last Tuesday as well, so I expect I saw you! I can’t remember what I was wearing last week or I would describe myself! I have very short grey hair at the moment (re-growth post chemo!) - I am 45 and sort of average height (5’4") - I think I was dressed in brown last week. I wasn’t too keen on the infusion over half an hour either, my hand felt very tingly & itchy at the time and for a couple of days after, and that evening I felt very itchy all over, although the cannula didn’t hurt particularly. I couldn’t see the point in it actually as we had to stay for an hour afterwards anyway, so its not as if you get away any quicker. I did ask if you had to stay just for the first few times and they said it was under review and hadn’t been decided yet. If we always have to stay I would rather have it over the usual time.
If the days keep changing we may indeed meet one day - its really odd but I have found that I have never seen anyone all the way through, for example all the ladies that were having surgery at the same time as me I thought I might see some of them whilst having chemo, but never have. Some people seem to go through the whole experience in a little group (I have met some at other support groups), but not me. It would have been nice to have a “chemo buddy”!!! Oh well.
Take care
Regards, Helen
Hi Helen
How strange to think we might have met on Tuesday. I finally received my treatment about 4 pm. I usually wait in the day room not in the large waiting room as it seems more “cosy” somehow. I am a lot older than you in my sixties but feel and look much younger (so I am told!) I am slim 5’ 6" and my hair is short grey and very curly at the moment. It was a bit curly before but post chemo it has gone really wild. I know what you mean about never seeing the same people throughout treatment. I have met one or two women who were really nice and then I never seem to see them again. Anyway good luck with your treatment and do ask for the longer time, if a few of us do they may decide not to change things (some hope!) I think I offended the nurse as I said I felt like a guinee (?) pig!
Big hug
Judy x
Hi
I am also having Herceptin at Leicester Royal Infirmary. I am due number 9 next Thursday providing my Doctor’s appointment on the Wednesday for the result of my last heart scan is o’k. My appointments have been changed from a Wednesday to a Thursday and although I don’t miss the long wait for the treatment I do miss the other ladies I had become friendly with. On my last treatment day one lady was offered the infusion over a half hour period but was told she would have to wait for an hour afterwards to make sure no adverse effects were being experienced by her because of the shorter infusion time. I understand in future all Herceptin may be infused over a shorter period of time.
Regards
Lyn
Hi gels- do you have your treatment in the chemotherapy suite at the LRI?
I finished my treatment there in December (am not on Herceptin) - but found the chemotherapy suite quite unpleasant; the waiting, lack of privacy and overcrowding made a not-good experience much worse
Have just had my first appointment at LOROS for mild lymphodoema- what a contrast - both in the surroundings and in the TLC shown by the nursing staff.
Hi
Yes the treatment is carried out on the Osborne Chemotheraphy Suite at the LRI. I’m not sure if they have made any changes to the patients receiving chemotheraphy but found on my last Herceptin appointment that I was taken quite quickly. They are infusing 4 Herceptins each day rather than everyone being called for a Wednesday and then having to sit around sometimes for hours until they were ready for you. The nurses are very nice…some better at finding a vein than others…thats another story. I finished my chemo in September 2008 and my hair has started to grow back really thick…not long enough yet to cut into shape…am a bit like Worzel Gummage at the moment.
Regards
Lyn
Hello everyone
Have had 3 goes now at posting something, one of which was quite long, but none have seemed to work. How annoying. Don’t have time to re-post the long one now either.
Lyn - I am due for herceptin No.5 on thursday morning so I will see you there - I will listen out for your name and make myself known to you if I can!
Take care everyone
Helen xx
Hi fluffybunny
Due to see the onc tomorrow Wednesday… Dr Samson…usually… and all ok with the Heart Scan should have Herceptin Number 9 on Thursday…Listen for a lilting Irish accent… thats me…lol or a wail depending which nurse is ‘trying to find a vein’. Otherwise known as Evelyn…or Evil lyn as my partner sometimes calls me
Regards
Lyn
hi
found out yesterday i have bc am devastated, anybody else in the same position thanks
Cathjue
So sorry you have this horrible news. Please keep posting comments as you will find lots of support on this forum. It will stop you feeling isolated. I was diagnosed 16 months. You will need time to let the news sink in but gradually you will find you will cope with it. I hope you find a buddy who is at the same stage as you as this is quite helpful.
Take care, sending lots of hugs.
Judy
pollysue - yes I went for my herceptin very early this time 8.45am, actually I was the first one receiving treatment. I did ask for the longer time and there was no problem. I think at this time we were all receiving Herceptin instead of chemo so yes I think they want to get us out of the way asap. Nice to get out early. Next time I am due to see my onc in outpatients and then they will give me my next appointment. So two visits instead of one! Just as well that I get a lift in.
All the best
Judy x
thanks judka
do feel quite down and alone,my sister has been great as she had bc 6 years ago, but she cannot be there in the morning when i first get up and feel very down,i have two young kids so i have to
take care julie
Hi Judka…
I got my herceptin on the Friday after seeing a new onc…Dr Samson had just had her baby that morning…wasn’t impressed with the new onc at all…just said all my tests were fine and I could have the Herceptin. Then they had no appointments for the next day and I was finally booked in as an extra patient on the Friday. I took the infusion over the 30 minutes with no problems only having to wait around for an hour afterwards. Next time I’m told I will be able to leave earlier. Have had my first appointment with the surgeon at Glenfield after surgery postponed until July… Apparently Mr Dzhumar has ‘disappeared’ from Glenfield…albeit temporarily.
Regards
Lyn
Hi Pollysue- was Kofi’s baby a boy or a girl?
Are you one of Ion Boiagiu’s patients- & was the the new person you saw, his new registrar?.
I thought Dr Samson was excellent- it’s bad news if her replacement is not so good.
I too am one of Mr. Dzhumer’s patients and am really hoping he will return by August (from wherever he is!) when I am due to see him again. I had great faith in him and really do not want to see anyone else.
Hi topsymo…
I don’t know if the baby was a boy or a girl and yes, I am also a patient of Mr Boiagiu. The new doctor is a lady called Dr Brown. I liked Dr Samson…at least she examined me every time I saw her. The new doctor just gave me the results of my blood tests and said I was ok to continue with the Herceptin. I too hope Mr Dzhumar returns soon as I also have great faith in him as a surgeon and I would like to complete my surgery with him. Although his registrar, Mr Neill, was also very competent.
Any of you having Herceptin this Friday at LRI? Mine is at 8.45am, if so see you there
Judy x
Cathjue
How are you keeping? Thinking of you and sending you all good wishes
love Judy x