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Kali
Member
since
15-11-2020
22
Posts
13
Hugs
10-05-2021
10:08
Did you stop the herceptin when it cleared? as I will be on it long term 3 weekly. Sorry to hear it returned. Very unfortunate. Have stopped perjeta now, but still PN is gradually worsening just on herceptin. Any tips appreciated. Thanks
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10-05-2021
10:03
Thank you. You are not going on and on. I asked so I want to hear all you and others have to say on this matter! Have now been taken off perjeta , but told will be on 3 weekly herceptin long term, still feel it's slightly worsening slowly. I may ask for it to be more infrequent. Any tips appreciated. Tongue much better now. Shooting pains, numb fingers and back of feet mainly. Font want it to worsen but don't want to stop meds. Any other targeted therapies, lesser known for her2 positive and former local spread though clear now. Thanks all
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17-03-2021
07:50
Hi, Did you find out who the holistic therapist was and what the ointment was that restores normal sensations to her fingers. I am at the desperate point of feeling I may have to stop the targeted therapies because of the worsening neuropathy and any possible ways to manage and reduce the neuropathy and prevent deterioration I am willing to try. Thanks Kali
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03-03-2021
03:07
1 Hug
Has anyone else either had peripheral neuropathy symptoms start during the above targeted therapy infusions or around only having targeted therapies and not from chemo. I started to feel numb and tingling in my finger tips which have lead to PN and nerves firing in the night in my arms and sometimes legs. I had chemo, them surgery then targeted therapies only. I also have neuropathy of the tongue which is unusual. I have a real dilemma about continuing treatment. As the onc team say it's nut linked but then why did I experience it during treatment. Any similar experiences or literature backing up the connection between targeted therapies and PN would be appreciated. Many thanks, Kali
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09-01-2021
09:40
1 Hug
Great news, so glad you are. I am also cancer free post op, but more treatments to go.... May we be cancer free for the rest of our lives. Ahmen ! Thanks for the tip. It's less nausea since yesterday, but more just the bitter taste in the mouth as the day goes by that makes eating difficult. Digestive calming drops may help anyway. Any tips for bitter taste appreciated. No need to reply if you have none. I woke up positive, to make food earlier in the day as can't cope with food prep pm. Strategies can help at times. Go well, Kali
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08-01-2021
09:03
1 Hug
Thanks for taking the time to reply and advice. What a journey! Kali
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08-01-2021
08:28
2 Hugs
Has anyone else found chemo symptoms such as nausea, eating difficulties and peripheral neuropathy worsening post surgery? Having had chemo first and then a mastectomy 4 weeks ago I have found the above worse than the weeks building up to the surgery. If you have, when did they settle down? Thanks Kali
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27-11-2020
08:26
Accidentally pressed sent. I also am starting to get a bit anxious about the time between chemo ending and surgery with some cancer still present, so hopefully I will just be relieved when it's gone and that will help. I know that will be a part of it. Thank you again for taking the time to reply and share. Much appreciated, Kali
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27-11-2020
08:23
Hi Jaybro, That's really helpful thank you. Yes there will be a full axillary node clearance too, I believe. So thanks for that too. I am starting to make peace with the process. I expect the feelings to go up and down, but like you I realised I really want this relationship to my flat side, to work and hope that two years on if not sooner I will be at peace with it and comfortable with it. I am more than my boobs agreed, still it's quite a journey.
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26-11-2020
06:03
5 Hugs
Dear All, Thank you to all those to replied to my former post deciding between recon or going flat. It turns out I have to go flat, in three weeks time (for two years anyway). Can any of you, who both wanted to go flat to put the body under less strain, which I feel too, but who were also terrified of the change to body image, give me some tips about the emotional transition and things that helped you adapt psychologically and share about the states of transition too. Insights that came or whatever helped you make peace with and accept your body's changes. Made it easier for you to attend to your wound etc. Many thanks! Kali
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22-11-2020
09:23
I don't know if I can decide. Will meet surgeon tomorrow. Thanks for sharing.
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22-11-2020
09:21
Did you find it hard at first? And what was the process of adapting ? Thanks Kali
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22-11-2020
09:20
Thank you. I will ask the surgeon about that. Thanks for taking the time to inform me. Kali
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20-11-2020
07:51
Thank you Evie. Useful to know about the sling option. I wonder if there is any literature on best options for different psychological make ups. I may post s question and yes look at older threads around similar questions. Thanks K
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20-11-2020
07:45
Thank you Jane. How were you fir the first free weeks after the DIEP surgery. I worry that I will feel kind of trapped with so much change to my body , limited mobility discomfort to tummy , breast recon and pic line as will still have targetted therapies every three weeks too. How was your recovery ? Thanks again. Kali
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15-11-2020
07:48
Thank you for replying. Onc nurse said to discuss with the surgeon. Thanks for your advice. I am still getting my head around the different types of reconstruction. Kali
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15-11-2020
07:05
3 Hugs
Dear All, Finishing chemo in two weeks and surgery will follow 4-6 weeks after with some radiotherapy then, I am wanting some advice about whether to have reconstruction or not. Still waiting on genetic result, but currently it's one breast being removed. Although I think I will feel bereft to look down and see nothing, flat chest when I wash and have radiotherapy, the thought of an alien body that has no sensation and the intense medical procedures involved too, doesn't appeal either. Although facing the world with two boobs feels better. Big emotional dilemma as don't really want to put my body through big proceedure either. What has helped others with similar emotional make up, decide ? Thanks Kali
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