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Littlemissacti
Member
since
01-05-2012
162
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3
Hugs
23-07-2020
12:51
Thank you for your reply. I spoke to the nurse in the chemo unit and she felt it is most likely related to the Ramipril. Made an appointment to speak to GP. I realise my question was quite specific and hopefully not applicable to many people.
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20-07-2020
04:52
I’m on IV Herceptin on a maintenance basis. On and off for the past 9 years. The last two months a few days before my treatment is due I’ve had a swollen lip. I also had it earlier in the year but didn’t take note of it. it’s not a cold sore. Looks a bit like a fluid filled blister! The last one only lasted 12-15 hours. Anyone else experienced this? It could also be Ramipril my blood pressure medication. I don’t take anything else. Swollen lips are mentioned as a side effect. I'm at the Hospital on Wednesday so will mention it then. Thank you.
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24-03-2020
06:56
1 Hug
Hopefully you’ve a garden you can spend time in as we can’t get out for a walk. Stay safe x
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24-03-2020
04:20
Spoke to the hospital today and they have confirmed I am on 12 weeks social isolation. My Herceptin has been cancelled until further notice I understand. Maybe other authorities will act differently but that’s what I’ve been told. Did you manage to speak to anyone Bibi? I’m making the most of the glorious sunshine and sitting in the garden. Xx
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24-03-2020
08:44
Yes me too re walk / run. I am only going to the shop when necessary, minimising contacts and adhering to social distancing. In view of the message from last night it’s not going to be a massive change for me other than the walk / run. will be in touch later x
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24-03-2020
06:47
Thanks Jill. My son did also say the same thing. I am keeping everything crossed. Checking with the hospital later today.
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24-03-2020
06:10
1 Hug
Thanks Bibi. I’m still a little bit in disbelief. I was going to register to help those on 12 weeks isolation! I will let you know what the hospital say today. Take care, stay safe. x
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23-03-2020
09:33
1 Hug
Has anyone else received a NHS text /letter to say they are in an at risk group? I've been having Herceptin for the past 9 years following my second breast cancer diagnosis. I was shocked to receive the text this evening. I am going to check with the hospital tomorrow. It says I must self isolate for a minimum of 12 weeks, I am due my next Herceptin on Thursday. I have checked and I believe Herceptin is an immunotherapy drug, which they say puts you at risk.
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16-08-2016
09:31
Thanks Lizzy for your reply. I'm guessing these particular side effects are not that common. With the increase in Omeprazole and regular gaviscon my symptoms are more controlled and my enormously bloated tummy is pretty much back to normal. The results of the ultra sound has eased my anxieties. It'll be interesting to see if my symptoms worsen again after my next Herceptin on Friday. I see my oncologist at the end of August so will discuss with him. Olympic addiction is also keeping me occupied 😄
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03-08-2016
04:48
I nearly added to the side effects thread but hope you don't mind my starting a new thread. I'm hoping someone ( I'm sorry if they are ) may be going through a similar problem. I've had BC twice in 2005 and 2011. In 2005 I had Herceptin for 12 months. Since 2011 I've been on and off Herceptin due to fluctuating lowered Echo heart percentage. I had a 2 month break in April and May 2016, and a fortnight after re starting I began with indigestion, gurgling tummy and extreme bloating of my tummy. Initially I was unsure of the reason why but all fitted with re starting the Herceptin. Rang the Drs who prescribed Omeprazole for a month, although it helped slightly I was still suffering. Visited GP who prescribed another month of Omeprazole and gaviscon which has definitely helped but not cured the problem. My tummy remains very bloated. GP also requested an abdomen ultrasound which was reassuringly normal other than having lots of wind / gas in there!! I had my 4th Herceptin ( since restart ) on Friday and my symptoms have definitely worsened again. I will need to ring / see GP early next week as Omeprazole runs out.Spoke to GP who has suggested increasing the Omeprazole but to mention it to my consultant. The indigestion and bloated tummy is uncomfortable and can making getting to sleep difficult. I see my oncologist at the end of August, I will have a further Herceptin before then. Has anyone experienced bloating like this and did it settle down or any suggestions which may help? As I'm on Herceptin long term it's not like I can think only another few to go.....any suggestions welcome. Thanks for reading my long post.
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24-05-2015
09:18
Hello rac83, thank you for your reply. Sorry that you too seem to be having terrible side effects. Hope your next treatment is much better for you. Overall I've not had too many problems over the past 4 years so can't complain but on Monday I just felt so unwell and couldn't stop crying, struggled to get dressed to see GP and then for him to say it's viral, I was so disheartened. I'm on the mend although still coughing. Do you have Herceptin IV or subcutaneous. I'm back on the IV as I didn't feel so well on the sub cut injection. Good luck with the rest of your treatment x
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24-05-2015
09:11
Thank you Snapper58, I was feeling really low and unwell when I posted. I'm pleased to say I'm feeling much better than I was although still not 100%. Think I've sinusitis now. After reading your comments I did find information saying similar. Will discuss with my consultant in case of any further problems. Hopefully there won't be any. I had a very sore nose a few years ago, I used Vaseline but did eventually get some antibiotic nasal cream which helped to clear the problem. Worth a try if the sores don't ease soon. Good luck with the rest of your treatment. x
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18-05-2015
10:08
I'm on maintenance Herceptin which I've been receiving on and off for the past 4 years. After a 5 month break I had my 2 nd Herceptin on Wednesday. Since Thursday I have been feeling unwell, started by sneezing, runny nose ( which I frequently get with Herceptin ) aches, cough and today a temperature 38.3. Feel like I've had a dose of chemotherapy. I feel so unwell. Visited GP who said it must be viral. Anyone had any experience of such an intense reaction and when can I hope to start feeling better.
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12-09-2014
05:21
I'm really not sure if there is anything that can be done to help. I'm hoping it will go eventually. I'll keep you updated after seeing my GP. How are you feeling now Crochetgirl?
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11-09-2014
09:03
Only found out today, well it appears my CPK blood levels are raised which can cause muscle aches and fatigue. Need to visit my GP now to discuss further and what happens next. Had a CT scan last week and Echo heart scan next Thursday. As daft as it sounds I'm pleased to have a reason why.
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25-08-2014
05:53
Thank you for the update re your oncologist visit. Yes it is a nuisance having the loading dose in hospital for 6 hours but I try to view it positively and enjoy the rest. I'm looking forward to seeing my oncologist on Wednesday. I work as a Day centre officer with older adults. Your life must be busy with young children too. I ran 13.1 miles today. I'm pushing myself as I have a place in the Berlin marathon at the end of September. Really not sure I'm going to manage it the way my legs are at the minute. Still I will give it a go. Once the marathon is over I will just run shorter distances. I had such a good running year last year so it's been difficult to suddenly deteriorate so drastically! I'm so looking forward to the holiday. Good luck with your treatment tomorrow. Do you have it in hospital or at home? J x
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21-08-2014
08:39
Thanks so much for the virtual hug. Life is rather hectic at the minute, I'm having my bathroom renovated, I'm going on a Norwegian cruise next weekend and I've got a job interview next Friday! I'm quite likely to be made redundant in the next 6 months so I've started job hunting. How did your appt go today? I see my oncologist next Wednesday and I'm looking forward to discussing the subcutaneous Herceptin. Xx
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18-08-2014
10:04
Hi again, I think I'm regaining some stamina. I can now run 10 miles but it is agony during the last couple of miles and wipes me out for the rest of the day. Still undecided if it's worth it but I'm determined not to let it get the better of me, but it is hard. I've cried more during the past couple of months than I have for 3 years. Like you say you just want life to return to normal. I'll be interested to hear what your oncologist has to say. x
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17-08-2014
09:52
Hello crochetgirl, sorry to hear you are suffering. As others have mentioned it could be the Tamoxifen but I wanted to share my experience. I'd been on IV Herceptin for nearly 3 years ( maintenance as I've had BC twice, 2005,2011) but at the end of April I was swapped to Subcutaneous and I've been fatigued and my legs are heavy and ache! I ran the London marathon in April without too many problems, I've since struggled to run 4 miles at times. I decided to have a break with a view to going back on IV if my oncologist agrees at the end of Aug. I've also heard from a nurse that many new patients on the subcutaneous are feeling exhausted. Not sure if that helps but sometimes it's good to know you are not alone and what you are experiencing is real. Do hope things improve for you x
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16-06-2014
09:23
Hi Choccy61, hope the second week of your jogging is going well. Pleased to hear you are enjoying it. Managed to heal my nose with some antibiotic cream I had from a while ago but having had my 3rd subcutaneous last Monday I'm feeling like it may be going to flare up again. My running isn't any better although I managed 5 miles without stopping yesterday, was very slow and legs ached afterwards. Not analysing it too much as I'd had an extremely busy weekend. I've some lymphoedema too, in my left arm. I've been a bit naughty in not doing my exercises daily especially when I know it does make a difference. I do have a sleeve but don't wear it daily. Hopefully I won't need to. I am trying to get back into the routine of doing my exercises daily. It is easy to think that when it's better that you don't need to worry about it! Xx
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