Mum feeling terrible

[Louiseslack]

Hi everyone, haven't been on here for a while. My Mum has had to start taxol straight after four lots of caelyx. She has managed to only have two lots with about two weeks gap. Each time she has felt too bad to have it. Her next one is due on Monday but she wasn't allowed to have it the Monday just gone as her platelets were only 58. She is feeling absolutely awful and has no energy to even lift up her iPad. Does anyone else feel like this? She is worrying that it isn't the chemo although I tell her it is. Could anyone else give me some ideas of how you feel on taxol? Mum has had it before. This is her fourth line. She has stage 3c PPC. We are worried as she hasn't really had a full three week course since December because she has felt so ill. She has only had two lots since December. Would appreciate any advice. Thank you very much . Louise xxx

[Katmal-UK]

Hi Louise. Have you spoken to her oncologist? What have they said? If you mums platelets are low then she wont have any energy. Its the worst fatigue you can imagine . I do hope you get some answers x

[Louiseslack in reply to Katmal-UK]

Hi katmal

We can never get to speak to her oncologist as she is never there. We have another appointment with her on the 26th Jan. Tbh I think it is her oncologist that has made her feel so bad as when mum asked if the taxol doesn't work (it has in the past) she said there is no more treatment on the NHS. Since then Mum seems to have given up. I questioned her on this when we saw her in December and she said if it worked then there was no reason why they couldn't use it again but then my sister asked if her bowel got obstructed and the oncologist said then it would be terminal and they wouldn't do anything! My sister is a nurse and I am a pharmacist and we know they wouldn't just do that but trying to convince my Mum is another thing. I have worked with consultants all my working career and they never have a bed side manner. I am so annoyed as before all of this Mum was so positive. Thank you for your advice and we have been here many times before but Mum seems to have lost her mojo.

Hope you are keeping well.

If her platelets are still low I will insist on a transfusion next week.

Take care and all the best xxxxxxx

[Hidden in reply to Louiseslack]

Hi Louise I was just going to say why hasnt your Mum been offered blood transfusion and magesium these would help her enormously. I would ring the CNS and ask these questions now, I imagine the taxol your Mum has got would be some benefit to her but if her energy levels are low perhaps she need the protein drinks and you should be able to source those for her. If your Mum used Movicol etc and eats a little fruit and brown bread then there should be no reason her bowel would block. I say again ring the CNS tomorrow and ask her about blood transfusions

[Katmal-UK in reply to Louiseslack]

Hi I was going to say the same about a blood transfusion. Also if you are not getting answers from your mums Consultant have you considered swapping Consultants. Mine original Consultant was awful, half the time he got my name wrong, was looking at the wrong notes and frequently had me in tears. I spoke to Patient Liaison who arranged for me to swop (though he wasnt happy with this) . Ive never looked back now and have a good rapport. Its worth considering . I, like Suzuki, hope you get answers xx

[caf132]

I think platelets have to be 100 to have the chemo. Good news is that they do bounce back quickly once they start multiplying. what is her hemoglobin? I was so so tired when mine fell in the low 8's or 7's. There are blood transfusions and platelets transfusions, they are different.

Best of luck to you and your mom. Please keep us posted, we are here for you. She is so lucky to have you!

Xx Carol

[joanne1338]

As well as a Dr my mum also has a specialist nurse that she can speak to (who is much easier to get hold of). Does your mum have an equivalent who may be able to advise?

[Louiseslack]

Thank you so much for your advice everyone. Mum is now in hospital as she has neutropenia sepsis and chest infection. She has had antibiotics and fluids and is feeling much much better. Her platelets have gone up to 85 too. We thankfully caught it in time. She has the energy to now get up and walk to the loo!! I can't thank you all enough for your help and advice, it means so much to me knowing there are others out there who I can turn to. Much love, Louise xxxx

[Hidden in reply to Louiseslack]

great news!

[Flower19 in reply to Louiseslack]

I have just read your post this happened to my mother back in September, started with a nosebleed wwhich resulted in her nose having to be packed to stem the bleeding , her platelets where at 5 , we were absolutely desperate an then were told she had sepsis, the fear was crippling she was so ill , but after transfusions an good antibiotics an a five week stay in hospital she came home , nevertheless with a blood clot in her arm an is having to have blood thinners daily , her platelets still go low to were she can not have chemo , so she has a reduced does every week now consultant says it is more tolerant to her body , unfortunately last week platelets were to low again so she wasn't allowed the reduced does , she suffers terrible with fatigue I visit everyday we are very close I hope your mum continues to improve an her strength builds up daily sending you both lots of love an positive thoughts x