I’ve just finished the second month on the new drugs (afinitor and exemestane) and I had an appointment with my oncologist today. It has been a hard couple of months though improving.
I saw his registrar 4 weeks ago and he’d told me that I was doing really well with tolerating the side effects. Apparently he should have told me that I was experiencing level 2 toxicity and should have been taken off the drugs for 2 weeks to allow them to clear my system, before restarting.
These are old drugs, why don’t these doctors know what they are doing? I’m ok but it’s so hard to trust when errors like this are made.
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Julie2233
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Thanks Barb, I am cross and feeling sorry for myself that I went through that and it could/ should have been stopped. I really want to trust the medics, I want to be able to put my well being in their hands and say please just look after me. But I can’t, i’m always having to check their advice. Even yesterday I felt the oncologist was saying that I should have known that the drugs were at a toxic level.
This isn’t the first time a registrar has got it wrong, I appreciate they have to learn, I just want them to go away and do it on someone else now.
Hi Julie, i just completed week 3 on same drugs. What is level 2 toxicity? I am feeling like crap. I have been getting headaches and my mouth is a bit sore, I use the mouthwash. My teeth even ache sometimes and now to top it off I have a cold and have a cough to get the phlegm up which is hardly anything. My face is extremely dry and I will turn beet red, bought Tiple B cream which helps. I am just not liking this treatment so far. I have never really had bad side effects like some ladies experience but....all I want to do is stay home in my comfy clothes and be lazy. I have absolutely no energy. My hot flashes are off the chart and now having the sweats. Thank goodness its cold out so I can cool off. We had snow flurries yesterday. Oncologist said after 8 weeks effects should get better. I don't know if I can last. Feeling discouraged 😞
He didn’t go into details but apparently it’s to do with the mouth ulcers and nausea. My entire mouth was full of ulcers, on the inside of my lips, on my tongue under my tongue and down my throat - even my tonsils. I had cold sores on the outside of my lips and a broken tooth root which was infected and swollen gums.
Because of the severity of these and that they actually prevented me from eating and swallowing it was an indicator of high drug toxicity and the drugs should have been stopped to allow my body to recover for 2 weeks.
They weren’t but when I changed drug brands most of the side effects diminished and became more manageable.
The ulcers and cold sores have now healed, the eczema and acne has improved. The dry skin and itching on the rest of my body is a lot better too. Headaches have lessened in severity and aren’t so often.
I still have no appetite and when I do eat feel very nauseous so I take an anti sickness tablet with my meal. The fatigue and breathlessness is improving but I’ve also caught a cold and the cough i’ve had for 6 weeks is awful and making me retch when I cough which hurts.
Oh and the hot flushes have stopped again though I do feel premenstal - talk about lack of patience and being over emotional!
Reading all that I sound a real mess but honestly the 2nd month has been an awful lot easier than the first!
On the positive side my hair is getting thicker and i’ve Lost nearly 14lbs and my bmi is back within the normal range and I’m no longer hungry all the time!
And did you see be taken on a puppy this week - think that might be a symptom of mental instability!!!
Sorry you’ve had a tough start on the new meds but glad you have pulled through and things are looking better ! Henry will take your mind off things ...and I’m glad you’ve got your daughter helping out too!x
He is fast asleep on my feet and snoring, I can’t move. He’s had a very busy morning playing with the older dog and they are now both worn out! He is gorgeous when he’s asleep.
I’m sorry you went through this painful experience. Thank you for sharing with us so we know what is not normal. I’m the type that waits for it to go away...
Well I was really just having a good moan and feeling sorry for myself.
I think because it's not IV chemo but tablets they are seen as not so serious but the side effects can be just as bad as IV chemo.
I tend to wait to see if things resolve, the oncologist was quite firm that if I get those sorts of side effects again the unit needs to know straight away so they can make the decision about the suitability of treatment. I didn't mention that his registrar had congratulated me on how well I was doing!
Hope you saw what I posted about how when we have a cold or the flu, that we should NEVER lay down to sleep. I have polio lungs and asthma. It makes sense. I have a chaise couch and whenever I am sick, I sleep sitting up on it. It actually is pretty comfortable and I am able to sleep. Hope you get well soon! Two week ago I had to get a ZPAK. Thankfully, it helped!
That’s really interesting, i’ve Always had chest problems and in a decent scan they saw that some of the lung cells in the radiated side were no longer working. I’ve always found it easier to go to sleep sitting up when i’m Struggling with my chest. Unfortunately neck and back problems mean that I can’t stay like that all night.
I saw your puppy, what name did ypu decide on? My symptoms aren't as severe as yours but feel like I am headed in that direction. I didn't know there were different drug brands. My afinitor is by Novartis and Aromisin is by Pfizer. Haven't had weight loss yet but I have wiggle room for that. I've gained 30lbs and currently on Weight watchers and have lost 8 lbs.
I am glad your effects are improving hopefully mine will too in time. My ribs hurt because of all the coughing. I had 7 cracked ribs over a year ago from my compression suite for my lymphedema and they didn't heal properly. My upper ribs are floating ribs as well.
Having a great evening it's 8 pm here in Indiana yeah only 1.5 hours and I can go to bed. Haha
I’m in bed already, it’s now 12.15 and i’ve been here since 10pm. I don’t seem to cough so much when i’m Upstairs and it’s quiet and I get to choose the tv channel!
The puppy has been named Henry Hobson after my husbands favorite beer, Henry for short. He is gorgeous and my daughter is on
Puppy sitting duty tonight as well as thumping my back when required to loosen my cough - it works! Though I don't Have broken ribs! That sounds so painful. Isn’t lymphoedema just great too - it’s almost like someone decided we didn’t have enough to contend with!
My first round if exemestane was manufactured by Pfizer, the second by apotex and this month i’ve noticed they are by another manufacturer so i’ll see what happens.
I’ve always had an over sensitive body to medications. Over the years i’ve Found antibiotics have given me worse side effects than the original problem. Medics just don’t seem to understand this.
When I was first diagnosed I was 10 st 2lbs (142lbs) and that was the heaviest i’d Ever been, This summer I was just under 12 stone (around 166lbs I think) and i’m Not a big build. This is the first time in 4 years i’m not starving hungry and it’s wonderful!
As I said for me the first month of meds was the worst, everything has improved. Hope it does for you too!
I like Henry. Never heard of Henry Hobson beer. My late husband liked Newcastle. The coughing for me is worse in the morning. Lymphdema does suck. Good thing I am ambidextrous because its in my dominant arm, my right.
My gentleman friend is so kind to help me and I feel horrible when I get grumpy with him. I just don't have much patience at the moment.
I got up to 169.lbs which is a lot for me. I normally weight 120 lbs. I have been on weight watchers for about 6 weeks and I am down 9.2 lbs 160.2. My goal is 140 but more would be better. I am only 5ft 3in. I have also been very conscience of weight and a health nut. After getting sick I kinda lost perspective, I thought whats the point. For 30 years I took care of myself so I wouldn't get sick....
It's really good to talk to you since we are at the same level of this crap.
Hope you have a great day today. Watching a great movie called The Horse Whisper with Robert Redford.
Robin🌹
I love the UK and have a friend in Weston super Mare that I visit.
Black Beauty and the Lone Ranger at the Saturday morning cinema club when I was a child, always had us galloping around the school playground on imaginary horses! 😊
I know Weston - where the tide goes out for miles. I'm about an hour and a half north of there on the England /Wales border.
Hobsons is a small local brewery who make tradional ales, I'm not surprised you haven't heard of them. My son who is in Minnesota is trying to get his local liquor store to start importing it 😊
Well done with the weight watchers! Every med I've had till this has made me gain weight even when I've watched calories and exercised.
This is crap isn't it 😐
I've got lymphoedema in my left arm. It developed almost immediately after surgery and I started to lose the use of my fingers because they were like sausages, and i found it painful. I had my arm bandaged twice and it helped but it came back quickly. Over here there is an operation but it's considered to be cosmetic surgery so not available on the NHS or covered by private health insurance. It's very expensive and no guarantee of success but instead of changing my car I paid to have it done. The lymph system was plumbed into the veinous system. It's not a cure but for me it was successful. I still have swelling across the back of my hand but I can use my fingers. My car has now done 180,000 miles and is still going though it's looking battered. Why don't they rejoin the lymph system when they remove the nodes, it is possible and would save us from having to deal with something else. Anyway that's my rant 😊
I agree with Barb - you can't beat Robert Redford and horses!
Hi Robin, just thought I would say hi. I also live in Indiana. You mentioned you are watching The Horse Whisperer. I loved that movie, my favorite scene was when Robert Redford tells the people who are trying to secure a horse who ran away to let the horse go. And then the horse goes a little further in the field and it is just him and Robert Redford. And Robert Redford just stands there with the horse across the field for a long time and doesn't move. Eventually, you see the sun starting to set and very slowly the horse walks over to him. That is my favorite scene because the horse knew he could trust him because Robert Redford was not trying to control him. Anyone who knows animals knows the trick is always let them come to you, don't go up to them if you are trying to win their trust. Just thought I would throw that in for what it was worth
Omg I loved that part too. I frequently take drives in the country and when I see horses at the fence will pull over and pet them. I live in Monrovia about 7 miles south of Mooresville.
Thanks 🙂 i’m Just having a whinge, I know everyone on here will understand my frustrations. Unfortunately friends and family don’t really get what i’m Going through and I hope they never get to understand either.
Yes, of course. I hadn’t met this registrar before and he is new to the department.
It would just be good to be able to trust what i’m told.
I am ok, my body resolved the toxicity but it has been a pretty rough 2 months. My ct scan has been requested for December, I just hope the drugs have done some good.
I know they need to learn and they are rotated around as part of their training but I just wish they'd see that I've had my turn and go and learn on someone else 😊
Sorry you had this experience. I would have flipped out and they would all have been told a few things. That is a hell of an error, I don’t care what or how they are learning. Here in the states, hospitals have residents and I used to work with them more often than not-the big difference is here, if they were treating patients, they had to report case by case beforehand to the md in charge.
I hope you heal quickly and feel renewed soon. ♥️♥️♥️🙏🏻🙏🏻🙏🏻
Thank you 🙂 I am feeling a lot better than I was in September. There isn't any point in getting cross, this seems to happen so often to me. I was just pleased that the oncologist was honest with me about what should have been spotted. 💕
I have brain damage from Exemestane. I have two oncologists. I told each one of them for at least 4-5 months that I was having vision problems, dizziness and balance problems. Neither one of them had a clue, nor did the nurses at both clinics have a clue, that the Exemestance can do this to us. I was the one who found it. I watched Lisa Ling on a show about Benzos, and was flabbergasted when a doctor told her it's not doctors' responsibility to know the side-effects, but the patients'. She couldn't believe it when a psychiatrist confirmed what the doctor told her. She actually said that doctors in medical school are inadequately trained about drugs. They actually want to put me on Xeloda and one of its side-effects is dizziness and balance problems. I refuse to go on it. I would not be able to stand up at all or function.
It’s always a balancing act, constantly weighing up whether the side effects of the medicine are worse than the consequences of not taking it. And to make it more complicated everyone reacts differently and there is no way of predicting who will get what side effects.
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and it’s quiet and I get to choose the tv channel! 
3 months check for my spine cancer today! And Ibrance 75mg
My two year Metaversary.
New oncologist 
