Experiences with Chemo

hey there all you lovely people!

My mum has had her 2nd lot of chemo (Cisplatin and Pemetrexed) and is doing very well on it. she has Lepto met which was affecting her speech a fair bit - after the 2nd chemo the speech got really bad then improved dramatically which we are hoping is a sign the chemo passed the BBB. But she is now on a handle full of occasions forgetting what she is saying mid sentence and struggling occasionally to recall words. I am not sure if its new symptoms for the lepto or if its just a response to chemo etc... has anyone else had experience of this with chemo and brain mets / lepto?

Many thanks

Jules x

2 Replies

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  • Dear Jules

    First of all apologies for not replying much sooner, we try to make sure that everyone has a response from us as we are passionate about supporting you all in this difficult journey.

    So sorry to hear about your Mum's ongoing symptoms. Her difficulty in word recall can be either a symptom of the Lepto Mets or something else , I assume given the number of days since you have posted this your Mum has probably seen her Specialist.

    For some Women with breast cancer it is documented that they can develop what is known as Chemo brain or Chemo fog ( memory and concentration is affected) I have placed a link on this information below:

    brainmetsbc.org/index.php?q...

    Please let us know how she goes. I have placed a link below on some information on Lepto Mets specifically: brainmetsbc.org/index.php?q...

    We hope to have a booklet on "Understanding brain metastases and lung cancer" soon and can be found on our website roycastle.org

    If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

    All the best

    The Roy Castle Support team

  • Thank you so much for your reply. After a few hairy days Mums symptoms all but disappeared which was great, she had no problems with balance and her speech was almost perfect - This maintained for a week or so until she had her 3rd round of chemo which has knocked her for 6 again - It really is hell watching someone go through this, especially my adorable Mum. She has wobbly legs again, nausea, very tired and now her speech has been affected again - this could be progression of the disease or an affect of the chemo, we just don't know and have to wait and see how it all progresses which is hell. Week 3 of chemo is her best week and is almost 'back to normal' as she puts it and really enjoys that week.

    week on week we just dont know how it is all going to go, Mum has no idea of prognosis and is an eternal optimist, i have read all i can and am terrified everyday.

    I would certainly say for the time being lepto is under control, or so it seems anyway. I just want it to stay that way for as long as possible

    I am spending as much time with her as possible and creating as many memories as we can.

    I m looking forward to her feeling much better in the next 3 or 4 days for her good week before her final chemo of Pemtrexed and cisplatin. She will then be dropping to Pemtrexed - They have indicated when this fails they will do immunatherapies, any info you have on these would be high;y desirable.

    Thanks

    Julie

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