Oral chemo

Hi Julie 

Are you perhaps referring ng to Abemaciclib? Although this is a targeted therapy not oral chemotherapy. 

Bw

Bookie

Hi Meadow view, sorry to hear of your diagnosis. Whilst I never had oral chemo my friend who had colon cancer did. She did have slight hair thinning but nothing major, she was given Imodium to help with any diahorrea and anti sickness meds to help if she felt nauseous which she didn’t need. Dry hands sorted by moisturiser and she was quite thirsty but it helped in a way to keep her water intake good and well hydrated. Everyone is different to how they fair with side effects but it does seem they can be managed. If you have side effects they might be able to adjust dosage. Her immune system wasn’t bad as she had a low dosage.

Wishing you all the best

Hugs from cuffcake x x x x x

hi julie, your post is exactly what i was going to write!!, sudden mastectomy october 2023, told that would sort it, then told chemo is needed, as some positive cells, so tried to get our heads around that, so had 3 sessions of ec chemo, first 2 ok, hours after 3rd one on 17th jan, ,3  massive seizures, terrified the husband, ambulance called and rushed to hospital, kept in for 24 hours, fast forward, we had decided at our oncologist follow up last friday that we would ask for a delay, as due to have last 3 chemos of docetaxel, oncologist states we are stopping the chemo intravenously, dont want to risk any more seizures pending/currently waiting for endo referral and neuroligist referral, as my levels were all over the shop. So many ifs and buts until definate plan in place

left in a daze, now of course we have so many questions, straight onto hormone tablets for 10 years!! anastrozole, terrified of side effects as already have osteoporosis, then going for radiotherapy then 2 years of oral chemo.  on tablets for seizures, although no one can say exactly what it was until i see the endo team.  the not knowing is awful

currently work have been amazing signed off and paid, but possibly 2 years of tablets!, can we still work, will i lose my hair, was cold capping on other chemo. Want to get back to work, almost a recluse currently  waiting for call back from breast cancer nurse to hopefully answer some questions, pending appointment with radiotherapis prior to treatment.  triage nurse mentioned abemaciclib to husband, like you said.

Any advice all, and thank you

Hi bookie yes it is abemacuclib  but it is in tablet form

Hi Meadow View,

Liziebee is correct Abemaciclib is a targeted drug not chemotherapy but it does have some side effects which are similar but less severe than chemo. I’m on this medication, about to start my 5th cycle. The main side effect is diarrhoea, which many on this medication find is worse in the first 2-3 months and then settles but you are given loperamide ( Imodium) which worked very well in my case. Although the side effects are not pleasant the benefits to this medication appear to be worth it. The Monarch E trial which assessed disease free survival in women which took this medication for 2 years, has shown that there was a 7% reduction in women who took Abemaciclib and letrozole when assessed after 5 years.
I am leading a normal life as before, apart from giving up alcohol but that is a personal choice. I haven’t lost my hair but I am a little more tired and sleep longer. There is a thread on here about Abemaciclib which you may find informative. Oncologist start you on 150mgs twice daily and your bloods are checked every 2 weeks for the first couple of months and then it’s monthly and can be reduced to 3 monthly if all is well as time progresses. If you are having concerning side effects Abemaciclib dose can be reduced to 100mgs and a further reduction to 50mgs is allowed before medication is suspended. It is a shock to be offered further treatment when you think you are all but done with your treatment but we are lucky to have this option as Abemaciclib is an expensive drug. I know I felt resentful bordering on angry when this drug was first mentioned but I soon calmed down and made my decision to give it a go. 

thank you shade, such good information, could you still go back to work, did you have to keep yourself out of the way, similar to when having chemo, i only had 3 more sessions to go, so when they start mentioning years of tablets, half of me thinks at least they are expecting you to still be around to take them, so emotional and confused, i thought the mastectomy would be mentally stressful, but this if and but options is so much worse not knowing, being in limbo.

x

Oh my goodness that sounds horrific, poor you, I have been given anastrozole as I was taken off letrozole, I have no problem with taking them but I just don't want 2 years of my life ruled by side effects which will prevent me from working, I work in a Primary School and as my immune system will be compromised they won't let me back, I have never refused any treatment but I just can't justify 2 years of side effects that is only preventative I just don't know what to do, I lost all my hair during chemo and its just starting to grow back I don't want to lose it again, sending love and best wishes to you xx

thank you meadow view, there is so much to absorb/get answers to, and financial concerns, as if not able to return to work even if its for a few more months until everything settles down, and my body and mind start to return to some sort of normal, trying not to worry about things that are out of our control, but so many questions, the awful pains and pins and needles in my right masectomy side arm is off the scale but oncologist and triage nurses dont seem to be concerned, are you still able to drive on the oral tablets, we was told not to whilst having the intravenous chemo, not that i have been any way, been such a recluse, its ridicolous

do you still have to inject for 7 days when on the tablets?  thank you xx

Hi W1cky,

I haven’t been isolating myself. In fact I had covid for the first time over new year and I was surprised at how mild I had it. My oncologist did take me off Abemaciclib for a week (apparently this is normal protocol) and I did feel more tired but only as anyone else would do that had had covid. I’m 62 and retired at 60 but I’m back to looking after grandchildren, doing school run and having them during school holidays. I’m in a cycle group, cycled 25 miles on Sunday and did a 5 mile walk on Saturday although I did have a lazy day on Monday. 
Your oncologist will monitor you carefully and if he is concerned about your blood results or symptoms he will reduce medication or give you a break from Abemaciclib. The worst part for me is how long I have to wait at my local hospital to have my bloods taken, so I can’t really complain. I am also on breast cancer now forum and I know several women on there are working whist on this medication.

Hi, I drive all the time. The only time I didn’t was for 2 weeks after full node clearance, I even drove home once after chemo when everyone was busy, it was that the bus or cycle.