Hi Ladies, I hope everything is calm with you all.
This is a follow up to my last post and it would be great to know of side effects any of you have had being on this combination.
As you know my medication of Pablociclib and Letrozole has stopped working now and I have a couple of new shadows showing on my liver. My Oncologist and Radiologist have confirmed it’s the same Cancer that I have.
So as from Wednesday I start a new regime and begin on the above combo. I had my pre assessment yesterday so I’m hoping my blood is ok to go ahead.
It came as a shock to both myself and a mystery to my Oncologist as my bones and lungs are stable. My blood has always been excellent. After two and a half years it has now changed.
Hi CherylFingers crossed for good blood results so you can get started on the next treatment and get on with life.
I’ve just been to afternoon tea and saw this giant plant in the garden. Thought it might cheer you up
Clare
Giant leaves
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Thank you Clare. It looks like a Castor Oil plant or Fatsia I think it’s called.Will be in touch xxxxx
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Sorry the picture was quite blurry - so well done on identifying it. You could say it was anything to me and I would believe it - no clue 😆.Did you start treatment today?
Clare x
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Started last night Clare. I’m just keeping everything crossed. I’m on it for 3 months to see if it is working. I am nervous about it. I’ve been to the Dental Hospital today. Oh boy, 2 hours in the chair again. It was a big job but they wanted to save the tooth due to the Denosumab injection. Again it’s been a nightmare run with the and Covid restrictions. We have booked a week away in Cumbria. It’s not until October. There’s a small cottage we go to not far from Cockermouth. We have used it for years. We are really looking forward to a break now. I hope you are feeling ok and taking things easy. Any luck with the house. Xxxx
I am in the same boat. No decision on next treatment. Please keep me posted on your progress with the new treatment. As I said before, a win for one of us is a win for all of us. It is so amazing to genuinely care about people you don't know. This community is truly life saving.
It certainly is. I will keep you all posted. I started my new treatment yesterday. I really don’t know what to expect. I hope you have a positive outcome with your meds. Take great care.Cheryl
Cheryl, I have not been on that combo since I went from Ibrance and Faslodex to Xeloda. The Ibrance/Faslodex combo worked for a year and a half. I’m bone mets only. I’ve now been on Xeloda for a year and a half. My oncologist said Everolimus and Exemestane will be next for me but so far the Xeloda is working and I am stable.
I have been part of a Xeloda Facebook group which I have found very very helpful. If you use Facebook and search for Afinitor (Everolimus) and also for Exemestane there are a few private groups you can join. I find the info people share with each other extremely helpful especially with dealing with side effects.
Thank you so much for the recommendation. Yes I am on Facebook so I will take a look. I’m pleased you are coping with the medication you are on. Best wishes
Hey Cheryl,I'm awfully sorry to hear your news. The exact thing happened to me. Liver nodule. Ugh.
I tried everolimus/exemestane, but it wasn't effective. I had two additional lesions appear during the 90 days I was on it.
The drug wasn't awful, although it did cause my face to swell. I woke up one morning and scared myself looking in the mirror! I also had little round, dry red patches come up on my skin. I still have the shadow of one on my ankle. The worst side effect is mouth ulcers. I was told to put the tablet inside a gel cap and the gel cap in a spoonful of yogurt.. I combined that with the steroidal mouthwash and never had an issue.. All in all, it wasn't terrible.
I wish you all the best and a good long run on the combo. If I think of anything else, I'll message you. Much love, Andi
Sorry to hear about your progression. I don’t have any experience with that combo, but I do want to wish you well on it and hope that it works for a very long, long time for you with minimal side effects!
Cheryl, please be aware that E & E can cause shortness of breath. Follow it closely because mine turned into pneumonitis with pleural effusion and water retention that my oncologist missed. I am much better now and off those drugs. I hope you do well on them; just watch for side effects. ❤
Hi Cheryl, I’ve been on E&E for two weeks after bone only progression. I had vomiting and a migraine for a day or two at the start but it has settled down. I have one round red dry sore on my leg that sounds the same that Andi mentioned. I am on the highest dose and will have bloods done on Tuesday for toxicity. Hope this combo works well for us. 🤞
Please let me know how you get on. I was slightly short of breath yesterday but I have a small amount of mets in my lungs and I’m also mildly asthmatic. It was a really windy day and I was out in the open for hours so put it down to that. Strangely enough I’ve had an awful rash around my ankle for months. Neither Oncologist or 4 GP’s I have seen know what it is. I’ve had antihistamine cream,steroid cream, Aqueous cream and nothing has worked. That happened when I was on Pablociclib and Letrazole. I asked if it could be the drugs and they all said in maybe stress. I don’t know. I still have it but it’s not so angry. It just irritates. I will be aware of all these side effects. I see my Oncologist again in 2 weeks so will push for an answer on this. Have a good weekend.Best wishes
Im just catching up here. I saw from another post that you have answers about the rash. That’s great news. I was told to watch out for shortness of breath on E&E as it can be a sign of a serious side effect. So don’t dismiss it. Hope you are doing well on the new treatment.
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Exemestane and Everolimus and my Sunflowers
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Exemestane and Afinitor
