Hi Susan
Thank you for posting.
Sounds like you are having a really difficult time with side effects so its understandable that you would like to connect with others who have a personal experience of neratinib.
Like any drug, neratinib can cause side effects. Everyone reacts differently to drugs and some people will have more side effects than others, particularly when first starting a new drug. Diarrhoea is a common side effect of neratinib, which can cause considerable stress and anxiety for people when they need to leave home especially if they travel on public transport. Its usual for drugs to be prescribed by your treatment team to help manage the diarrhoea and its important to take these regularly when you first start treatment. It’s also important to contact your treatment team if you have diarrhoea 4 or more times in 24 hours.
Your oncologist is the best person to talk to about the problems you are having and how it is impacting on your daily life. If you have not already done so , we would suggest you let them know how you are feeling and how the drug is affecting you. They have all the information about your individual situation and will know if there are any alternative options for you. You may also want to get back to your breast care nurse to remind her about arranging for you to have contact with someone on the same treatment
I wonder if you have thought of posting on this part of the forum to reach out to others who may be on this treatment. In the meantime, you may be interested to look at this forum thread from last year.
Coping with the emotional impact of a breast cancer diagnosis can be difficult and subsequent treatments can also cause high levels of anxiety for people. Ways of managing that anxiety may vary. And here are some hints and tips for you to try until you can talk to your oncologist.
We have a variety of free support services, which may be of interest to you at this time. We have both online and face to face services and there is more information about all of these on the link.
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Best wishes
Eve
Breast Care Nurse
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