I’m sorry. I feel like I have one moan after another but I have just completed my first cycle of ribocyclib. I have been so nauseous and tired but expected to bounce back in my week off but haven’t. I still feel rubbish and I am really struggling to eat and drink. I have a constant sweet taste in my mouth which is awful and food just smells and tastes horrible. I am really having to force food and drink down but then feel nauseous. I am hungry but can’t face food.
I’ve just read quite a few of your posts, since this Feb, and also noted you’re first time around was 2014.
I’m soo very sad you’ve had a secondary diagnosis, Jules, and that you’re struggling the way you are. Reading of any women like yourself, upsets me, and always makes me feel so blummin lucky, that I didn’t have to go through chemo and hormone treatments with either of my two cases, 06/07, that were just dealt with surgically by masts and full node clearances.
Has your GP not tried you on any different anti-sickness tabs? to hopefully help with your NONE appetite? Also, has anyone suggested taking any of the high protein, and fortified power packed drinks that there are??
I reeeally hope you’ll be feeling better soon. Lotsa love to you, Delly XX
I just wanted to flag that for about the last week I have had all sorts of gastro problems - first the worst heartburn I have EVER had in my life… for almost three days straight, diarrhea, nausea, threw up once, and then the wind. Oh god the wind. Pain like Ive never known and unable to stand up straight. Fatigue and stabbing headache. On top of all that I absolutely lost my appetite and at one point last week felt like throwing out everything in our fridge and pantry because I was sure I was never going to want food again. Just the concept of bread made me nauseous. I also had that sweet taste in my mouth and I think it was potentially due to being in ketosis from not eating anything and burning fat for fuel.
My current drug (olaparib) can cause a lot of those issues above and I was issued anti nausea meds and even with those I still wanted to burn down my pantry. They had me hold the drugs for a few days while the heartburn calmed down and I improved over the weekend with a lot of painkillers, wind-eze, and senna. Ultimately I think it was either a gastro bug or some Covid variant. Is there any chance you could have something like that going on? There are so many bugs out there right now, and the CDK 4/6 inhibitors dont give you much of a chance to fight anything off, especially if you are just starting and adjusting.
Ive probably taken in about 500 calories a day tops for the last 8 days or so and was starting to get really worried. Best thing to do is go with the flow - ice lollies were awesome for a few days (and I got some kids ones with “hidden veg” in them - they also helped with the mouth taste), peanut butter on half a banana, some grapes, a bit of yoghurt, etc. I also got some pressed coconut water in - that ice cold was so nice to sip and easier on my stomach than juice. Even if its one bite of something every hour, you are getting some nutrition in. Throw out rules about vegetables and mealtimes - if a chocolate digestive sounds like the greatest thing on the planet then go eat one. Or a bite of one.
Definitely talk to your team about nausea though - lots of things they can prescribe!
What a horrid situation. I was like that with my primary treatment, except everything tasted like salt or soap, mainly soap, so it all felt revolting. I’ve just lost my sense of taste on cape and find myself eating stuff I would never have eaten before because it at least tastes of something.
On the matter of red grapes, if you’re taking senna, avoid them. I have had a couple of cycles with quite severe cramps and constipated diarrhoea recently and only just realised that it’s been caused by the fact that I’ve been substituting grapes for chocolate (tastes salty now). They can have a strong laxative effect.
As regards eating, it really is a case of getting in as many calories as you can, no matter how unhealthy the source, because you can’t afford to lose weight on chemo. I have the permanent tendon damage to vouch for that! I found Heinz vegetable soup had a bit of taste and made toast more palatable. The community nutritionist also prescribed all sorts of high calorie drinks and foods but, again, it’s all down to those tastebuds.
When I started primary chemo, I was obsessed with not being or feeling sick because that’s been a lifelong phobia. I was already using cyclizine when I felt nauseous and the hospital pharmacist suggested I stick with cyclizine and use meta-whatever as well, so long as I left 2 hours between doses. It might be worth checking on that. It’s not like it’s for a prolonged stint, it’s only till you get your new drug dosage right and your body adapts.
Hope it gets sorted soon. It seems to be a lottery as to how we will react to new chemos. I’m not looking forward to my next drug, whatever it is! Best of luck - it will improve eventually (but how long is eventually??)
Jan xx PS. I never took off my sea bands. Again, worth a try x
I’m sorry to hear that you’re experiencing such discomfort after completing your first cycle of ribociclib. It’s not uncommon for cancer treatments to have side effects like nausea, fatigue, and changes in taste. The taste changes you’re experiencing may make it difficult to find appealing foods. You could try experimenting with different flavors and textures to find what works for you. Some people find that sour or tart foods help combat the sweet taste in their mouth. Cold or room-temperature foods may also be more tolerable than hot dishes. Eating small, frequent meals or snacks throughout the day instead of larger meals might be more manageable. You might start with an egg salad recipe which has a high carbohydrate content.
Fatigue is a common side effect of cancer treatments. Listen to your body and rest when needed. Prioritize self-care and engage in activities that help you relax and find comforts, such as reading, listening to music, or practicing gentle exercises like yoga or meditation.
Instead of forcing yourself to eat large meals, try consuming small portions of food more frequently. Eating smaller meals may be easier on your stomach and help alleviate nausea.