Abemaciclib, finding ways to handle side effects

Hi,

Oh well done you, it sounds like you've done some brilliant problem solving and strategising. 

I'm so glad that you've got the upper hand over the dire rear. I'm sorry to hear about the oral thrush, I remember when having IV Chemo that I found salt water mouth rinsing and apple cider vinegar mouth rinsing very helpful. Also using my Waterpic jet flosser helped. I hope it resolves soon.

I start back on 150bd Abe tomorrow so wondering what that will bring. If my platelets and neutrophils crash again I'll need go back to 100. There was a bit of activity in a shoulder muscle which they're going to MRI, but I'm not going to concern myself with that unless MRI indicates there's a prb.

I'm so delighted that you have found a way of dealing with that debilitating diarrhoea, you were such a trooper but it must have been terrible. Many pats on the back.

Very best wishes, Andrea 

Ah bless ya,

Yes I'm doing a bit of loin girding I must confess, but my Oncology team are very empowering, if it's too much I'll come back down to 100.

I want to try it. It's always an interesting debate between quality of life versus quantity. A very fit and well friend wondered why I would choose a reduction in life quality when I had no guarantee that a higher dose would confer tangible benefits. My response,  I simply would like  as many birthdays as possible.

You, and many other contributors to this website, have shown great positivity and ingenuity in making the best of the cards we are dealt.. We adjust our expectations and find ways of getting joy out of things we might previously have taken for granted. I find massive enjoyment in reading and have just bought some comfy garden furniture so I can be outside even when fatigued. We do what we can with what we have. You, in particular, are amazing at taking control and getting the best out of everything.

So here's to the combination of positivity and also the freedom to openly share when we are discouraged, pissed off or frightened. This website is a great supporter of  this ethos aand I'm massively grateful to Macmillan staff for running it.

Sorry, I got a bit carried away there. Thanks so much for your support and great to hear about your success 

Very best wishes 

Andrea x

A sunny Good Morning!

The "quality versus quantity" you mentioned, Andrea, is something I've been contemplating for a while and it's such a difficult beast... I have dropped to 100mg for a month to give my body a rest and therefore hopefully improve the quality, but I'll likely go back to 150 the following month on the understanding that "more is better " in this situation...

My first checking scan shows "the tumour is currently contained" and Denosumab beginning to "infill" missing bits of bone. Pretty good after just 3 months methinks! Oh, and if you're not doing it already, warming both the Fulvestrant and Denosumab in hands prior to injecting reduces the sting I find. (Every little helps!)

Hope loo visits are decreasing. Do you both get the horrible bloatiness??

Take care

x

Good evening, 

Thanks for the lovely email.

Great news about your treatment, Swim5

Yes I did get that full up feeling when I was on 150, but not on 100, I'm waiting to see if it comes back.

My consultant wondered whether in the future they may start patients on lower doses then increase, just to let out bodies get used to it. I'm curious to see what 150 is going to be like this time. 

It sounds like you've made some excellent progress, really encouraging. Well done you.

Having a month off on 100 worked for me, I hope that  it does the same for you.

I've had a couple of sessions of dire rear since I increased to 150, they responded to Immodium, so I shouldn't complain.

Very, very best wishes, I hope all continues in this encouraging positive way,

Andrea xxxxx

I was moved to put my feelings into song, whilst perched on the loo at 2.00 in the morning, Kindle in one hand, immodium in the other. Apologies as it totally tasteless .

I dedicate it to all of us in the Dire Rear Club, for whatever reason.

To be sung to the tune of ' Sound of Silence' 

Hello Lavvy my old friend 

I've come to sit on you again 

My bum is acting like an Etna Blast

Eruptions flowing out so thick and fast

And there's just one thing to calm my poor old bum

Immodium 

To make the  cystern silent

Apologies to Simon, Garfunkel and almost everyone else

Best wishes

Andyv 

Hi 

big sigh .... well it was good while it lasted BUT the diarrhoea is back with a vengeance... it’s bloody overridden the immodium. I was stuck in traffic diversion queue the other day and literally sunk my teeth into my hand to try and control cramps/ violent urge to evacuate. My mother was passenger and helpfully offered me a sandwich bag to sit on in case !!!! How we laughed .... not. 

I spent a couple of days lying on sofa/ bed so fatigued that I couldn’t even brush my hair.

Big sigh again..... Amanda 

PS: I did like your song, you are v creative at 2 am !!! Your cheerfulness in the face of it all it quite wonderful thank you x Ed Sheeran hasn’t got a touch on you xxxxx

Hi 

sorry am on a roll can’t sleep - Shirley the feeling of bloated ness I have put down to inflammatory effects of harsh acidic diarrhoea BUT thinking about it my hands feet feel a bit numb ( bit like a chemo neuropathy feeling ) and I wonder if it’s actually a result of some water retention ??? In stomach as well ? I do find my appetite is v reduced a standard side effect and when u do eat a normal size meal I feel like I have overeaten.  

I have come to the conclusion that abe  is like never ending chemo - but with having your hair and nails. We have it all plus  diarrhoea. What do u two think ? 

Xxx Amanda 

Oh I'm so sorry Amanda, 

That sounds like a horrible experience

I  actually  bought some inco pants for air travel, and I've occassionally worn them for nights out, just in case.

I put my own knickers on underneath so I can use them again . So far I haven't  poo'd in them, 

It could be a good thing to fact find re best ones.Just for the times where we might get stranded. Not a nice thought, but needs must.

Did you ask them about the drug which you're on and is listed as being incompatible?  I can't remember the name now. 

It might to be good for them to explore all possibilities as you certainly seem to be having a really rough time.

I begin my second post -150 Abe week tomorrow, which is when fatigue and Etna syndrome really kicked in last time, so I'll let you know about fatigue in a few days.

I wonder if they would refer you to a dietician as the severity of your side effects is shocking..Actually I saw that this website has a dietician again. As long as it's someone who has a good knowledge of Abe, like my friend the GP, as just being told to have a normal, well balanced diet is not what you're after. You need results of recent studies 

Sending massive hugs and encouraging thoughts and much admiration for your courage. 

Very, very best wishes, Andrea xx

Hi 

yes weirdly I’d never seen the dietician ref before but just noticed it on homepage before I read your post. I think that’s v sensible re the incont pants I just don’t want to have anymore than 2 Imodium a day pig headed of me possibly.   Yes re dietitian but I just don’t  want to be disappointed by general advice , do u know what I mean ? 

i think I got too complacent and ate  whatever I felt liked which when I started on my regime I didn’t do. Stupid me . My energy is better again thank goodness.

Oh def not courageous, driven by fear ...

I am re reading sue  Townsend “ the woman who went to bed for a year” to cheer myself up. I read I pilgrim ages ago - v gruesome and complicated thriller. I am SO hoping all will go well this 2nd week for you X 

I hope you are ok Shirley ?

Xx Amanda