Hi ladies
Well I’ve done over 6 weeks on my new meds...Afinitor and exemastane...no ulcers for which I’m grateful but I’m now feeling so weak so I texted my oncologist today requesting the 7.5 mg dose instead of 10mg and she’s agreed...hopefully I’ll perk up!!
Sometimes you have to speak up and voice your concerns
I thought it was too good to be true initially!!
Barb xx
That's good, and glad you are tolerating it otherwise. We are all as different on the inside as our fingerprints are on the outside! That's why one can take something and then another can't ... my prayer for you is that you will tolerate this new med and thrive on it, and I ask it in Jesus name, amen! <3 xo
Thank you so much
Barb xx
always! love ya 
Good luck with it all Barb. I hope you keep us posted as to how the dropping down meds goes, and hopefully some reprieve for you. Is this what they call a second line of treatment? We’re you on Ibrance /Letrazole before?
Totally with you on that Barb. Yes, best to speak up.
I hope the lower dose is more manageable xx
Hopefully it will...I wasn’t incapacitated but the thought of feeling this way for a long time was depressing
In fact I would have chopped up the tablets myself if she hadn’t agreed to lower the dose...naughty I know but feeling crap is not on my list...it’s bad enough putting up with all the pain
Barb xx
I think you always have to speak up. I hope the lower dose works.
Similar to the diet thread—I find if I juice fresh ginger or put it in a smoothie it helps a lot with energy. Not sure if you like or can tolerate it but it’s with a try. I put quit a bit in. And make sure it’s fresh.
I love ginger...one of my favourite things (especially the biscuits!!)
I sometimes do a juice with apple carrot and a piece of ginger root...will do more often
Barb xx
Tell me more about ginger And energy.
I take a big chunk of fresh ginger (about 2 inches or so--sometimes more) and either put it in my vitamix or a juicer. I add beets sometimes (apparently good for one's red blood cells) and a whole lemon. I also like to add cucumber or Bok Choi. The ginger is very strong--almost peppery, so may not to be everyone's taste.
There is something in the ginger that works like caffeine for me. It almost makes me hyper lol. And the other ingredients are healthy too.
I have also read that ginger is a good anti inflammatory. And is of course good for digestion.
I hope the lower dose helps you to feel better. Thinking of you and wishing you well!!!
Hi Barb,
I hope the lower dose helps you feel better! How will your oncologist determine if it’s working? If Faslodex doesn’t work for me that is my next line of meds. Carrot, apple and ginger are one of my favorite juice blends!
xo Jade
I am happy you didn't get the mouth sores, I didn't either. I fight the fatigue every day that's why I take naps. Some days are better than others. Keep us posted on the new dosage. I am on my 5th month.
Robin
Robin are you on 10 mg...I’ve forgotten
Barb xx
Yes 10 mg. She said I was handling it well so far as my numbers go. I just have some of the weirdest side effects that come and go. Next week I have to empty out my whole house furniture and anything that sits on the floor. Landlord is putting in new floors throughout because my water heater leaked just before Christmas. That week I will be sleeping on a air mattress in the living room because my daughter and boyfriend can only help me on the weekend before and after. Floors being installed on that Wed. Not looking forward to that but ready to get the flooring down. House has been torn up since leak.😫
Oh no...what a faff!!
I hate any disruption which is why I’ve still got the same curtains I’ve had for years!!
I have wooden floors and rugs so easy to do
Just think how posh you’ll be!!
You’ve done really well on 10 mg dose...we’re all so different...as long as it keeps working
Barb xx
Just a mention on LL and repairs. My LL NEVER makes any repairs. She thinks since I rent this coop apt. (she lives on another floor with a much bigger apt.) and have lived here 25+ years that I am responsible to fix things now. You are lucky you have a LL that takes care of things like that.
My friend did her laundry last week in her house. She said thank God I have not left the house as she has done many times in the past while doing laundry. She decided she wanted to add something into the laundry (it is on the first floor where her living room, kitchen is).
She said she was shocked. It was a major floor and her brand new wooden floors and a large area rug was soaking went and water was still coming out. She called a handyman that she usually uses. She said she was crying hysterically. He came in and sucked up all the water and told her they would have to wait a day or two to see if the wood floors would buckle. My friend was so upset. Luckily, thought it now looks like the wood floors will NOT have to be replaced. She was just so thankful that she had not left the house bc the damage would have been so much worse.
At least your LL is on top of it. I can't complain too much (we don't really get along that well, my LL and I) because for Brooklyn, I have an apt. that I am only paying $1,325 for and which includes gas and electric and it comes with a dishwasher and I have central air conditioning that I do not pay for. They have a big beautiful laundry rooms downstairs in basement and a large pool area and a small little gated park area (which I never use LOL) so I know she could easily kick me out (but then have to spend thousands to renovate) before she could even think of renting or selling. My LL has not done any repairs in years. So I never complain although I get angry sometimes, because I fear she will then kick me out and I know I could not find another apt. in Brooklyn and my rent and gas and electric would be much higher. So I bite my tongue.
My LL are very picky about their house. Fortunately we get along well. I love my house and they have totally updated. I live in a really small country town, we have 1 stop sign. Population is about 1300. Sounds like you have a nice amenities. I have never been to Brooklyn. I have driven through New York when I moved from MA to IN. I live in Indiana south of Indianapolis.
Funny. In the past I could never imagine not living in NY. There is so much to do and many events are always going on and cost nothing. But now that I am older, I kind of wished I lived in a small town or in a cabin near a lake (my dream). Unfortunately, now that I am on Medicare as my primary insurance and after some stressful months of applying, I now have FULL MediCAID as my secondary insurance. So I do not pay for anything and I get free car service (I do not drive nor do I have nobody that even lives in Brooklyn anymore) to drive me to or from all doctors appointments. Otherwise I would have a long walk to the bus station to catch the bus to take me to the train station and then walk from the train station to the Cancer Center.
Medicare is federal, Medicaid is state so now I am kind of stuck staying in NY bc I would lose my full Medicaid and every state has different requirements and no way I want to go through that process again so now I am stuck in NY. (But grateful for my full medicaid and especially the free car service to and from all doctor appts.)
Hi Barb,
So sorry to hear about the fatigue and glad you got it sorted out.
Let me mention that when I was first complaining about extreme fatigue (several years ago...) my doc prescribed Ritalin (or adderall? I'm not sure which...). I took it a few times, really just for the experience, and it was very effective! I definitely upshifted from first to third gear and felt kind of perky, in general. I didn't end up taking it regularly...not sure why...but thought I'd mention it as an option if you continue to have problems with fatigue and maybe need to get through a busy day or similar...
Take care,
Lynn
So true! We always have to never be afraid to speak up!
I’m sorry Barb. I’m dealing with some extra exhaustion above what I had for the first 18 months. I’m not sure if it that I’m slightly depressed because I’m sick of being sick, if I’m not getting enough sleep, I’m having slightly more pain, or my first line drugs are giving up. My last scan was good but my markers are slowly inching up. It sure is hard to figure out what causes what. I hope decreasing your dose works for you.
Elaine
Hope you feel a bit better soon on the reduced dose Barb ! And hope the new line of treatment brings good news for your next scan . Keep your mind busy ... hard getting out this weather tho’ ! Much love x
Hi Barb, been on Afinitor and Aromasin for two years now. I was on highest dose for over a year. I was fortunate. On 5mg now and still doing well. Prayers for you.
Oh that’s cheered me up that they worked for you...I’ll try and cope with the 7.5 mg and maybe I’ll be able to increase dose later
I hope they work for me like yours did....we’re you on Ibrance before?
I guess I could have persevered but I like to be active and had started swimming in August and was doing 20 lengths quite happily but now I’m having to rest between lengths all the time since I started Afinitor so I know it’s that
Why did you drop the dose to 5 mg?.. just wondering and did your oncologist say that dose is still effective?... if so then why start on a high dose...don’t get it
Barb xx
Oncologist started me on highest dose for 2 reasons. Started on Ibrance and Faslodex. Within 6 months I had progression so it didn't work at all. I have cancer in ribs, spine, shoulders and front of hips. The only reason I was lowered to 5 mg was I had a very rare side effect. My eyes would feel like someone stuck a pin in them and they would start bleeding. I had a two month break and started on the 5 mg. I have the normal side effects with sores on my head and face and some weird stuff it's done to my hair. My hair is very thick with no loss at all. The oncology nurse talked with me and my husband a long time about what to do. I have fatigue some days and sit in bed and read. I get my great nephew at 6:15 in the morning. Take him to school and pick him up and keep him until 6:30, I've been shopping since October because we moved and I'm decorating. Overall, I've done extremely well and thank God I can do what I do. This is also amazing. Before I even got cancer I had a knee replacement, 2 hip replacements and rods and screws holding my back together. Any other questions, feel free to ask.
I am on Afinitor and Exemestane and I too have the same pain in eye but without the bleeding. My oncologist told me to see my eye doctor. So it seems the meds are the cause. Very interesting. The pain kinda comes and goes and is mainly when I am sleeping. Sometimes it's so bad I can't even open my eye. It's mainly my left.
I also had the sores like bug bites on my lymphatic arm, back of neck and head. Those have since stopped. These side effects are so weird.
Robin
Hi robin
Those eye pains sound awful...seems as if I’ve got off fairly lightly...feel bad about moaning
All the best
Barb xx
Robin, yes they are weird. The sores seem to affect most people. My Oncologist said I was his first with the bleeding in my eyes. According to him it can do things to your eyes. It blurs my vision in the evenings.
Wow, you are in such better health than me. Swimming 20 lengths and going horseback riding. I'm Impressed. I blame my lack of physical activity on my diagnosis, when in reality now that my pain is being managed by a pain specialist, I can and should be more active. I will never wear a bathing suit again though bc I have gained so more weight and also I have a horrible ugly looking scar from the operation on my upper left groin area and also a large ugly looking large red patch of skin on my lower left leg that I am embarrassed about bc it is ugly looking.
I was do depressed and mentally in a bad place when the pain was limiting my life to the point that I was unable to leave my apt. and I could not even stand to look at myself. I desperate need a hair cut and coloring as my hair was gray on top, different boxed colors and was way too long and dry looking. I finally realized I needed it to be done to give myself a boost mentally.
I finally posted a picture of myself (I rarely allow myself to be photographed even before my diagnosis) bc my facebook friends (I keep it small, I have 15) wanted to see my new haircut and highlights. I had been afraid with the pain in the past that I would be unable to sit for any amount of time so I kept putting it off.
So I finally got it done and it made me feel better but before I posted the photo, I used an online marker to completely black out my face and just showed my hair. When my friends asked me why, I said you have not seen in my years and I have gained a tremendous amount of weight, so I actually covered up my whole face. That is something I need to work on....accepting the way I look now. I had even covered some of the mirrors in my apt. because I could not bear to look at myself and my fat face LOL....I think though I am getting a bit more accepting of it.
So if you and many of the other women can do things that I THINK I cannot do, it just goes to show me that I need to push myself and not blame everything on the cancer or the meds.
Hi there
Try not to think what others think about how you look ( or how you think you look)...not easy but most people are too interested in themselves that they couldn’t care less about other people’s appearance
There are some very overweight people that swim where I go but what the hell...they’re getting exercise and trying to get fit so I applaud them...better than staying in the house
My friend who has just finished chemo and is totally bald...strides into the gym like she doesn’t care and everybody knows her now...she teaches yoga as well and doing downward dog in a wig would be daft!!
People who judge and criticise others are the ones with a problem!!!
You’ve made the first step having your hair done and that lifted your spirits so just do a little something every day and reward yourself!!
I have to make myself do stuff every time...today for example I’d arranged to meet up with our old neighbors for a bite to eat...I got up late...looked crap and really didn’t want to go but had to force myself and be social...had lots of pain and felt nauseous so just had some soup but glad I went
I swim or ride as much as possible...guilty if I don’t but it’s hard to stay motivated
Sometimes I feel...what’s the bloody point?...it will all end in the same way...I’ll die of this disease whatever
But I just try and carry on as best I can
All the best
Barb xx
Hi Barb,
I'm glad you do not have any mouth ulcers to worry about. Hopefully the lower dose will help alleviate your feelings of weakness. You should still be able to function.
Sophie x
We are our best advocates. Hoping the lower dose will boost your energy. Blessings Hannah
Glad you spoke up! Only way to deal with mbc.
Charlie1712 here. I went on 10 mg. of Afinitor/Exemastane combo a little over 2years and last two sets of scans still show no progression of my MBC. I occasionally have mouth ulcers but a dexamethazone oral swish used as needed controls those quite successfully. I was previously on the Ibrance combo for a little over 2 years at the highest dosage. I keep myself very busy, frequent road trips around my state of Iowa helps a lot. Keep the faith, take naps when tired, belong to a card club, return to your hobbies, read, and enjoy life just like a normal person. As women, we are strong!
Charlie thank you for the positivity...has bucked me up as I’ve just had a little cry...it’s always the pain that gets me down then on top of it having to change medication...I’m a tough girl but sometimes I just feel helpless
So pleased to hear you’re doing well on these drugs...I hope I’ll be like you
Barb xx
Great to hear that you self-advocated!
Even the 5mg dose of Afinitor is viable in terms of efficacy as per the studies below:
MBC patients treated with the combination of Afinitor and Aromasin at Moffitt Cancer Center were subdivided into 3 groups: 77 patients were started on 10mg daily, 29 patients were started on 7.5mg daily, and 31 patients were started on 5mg daily. There was no significant difference in PFS between starting the recommended dose or a lower dose. Patients initiated on lower doses were less likely to require dose reductions or discontinue due to toxicity, even with later dose increases. If oncologists are more comfortable starting a lower dose, survival may not be adversely affected and patients may be more compliant, deriving a prolonged benefit from the combination. From: ascopubs.org/doi/abs/10.120...
68 HR+, HER2- MBC patients were given 5mg of Afinitor with Aromasin. After a median follow up of 14 months, PFS was 5.3 months and OS was immature. 16 patients (23.5%) were at the first or second-line and 52 (76.5%) were at third line or later. PFS for the first and second-line was significantly longer than that for the third-line or later (12.9 months vs. 4.6 months). 11 patients (16.2%) achieved partial response, 42 patients (61.7%) had stable disease, and 15 patients (22.1%) reported progressive disease. The ORR and CBR were 16.2% and 35.2% respectively. From: sabcs18.posterview.com/nosl...
I've been on Afinitor for nine months. The first several months were at the 10 mg dose. Unfortunately, I ended up with awful mouth sores, "crazy pavement" in my lungs and more fatigue than I could handle. The doctor wanted to switch me to another med, but I convinced her to wait until it was clear whether it was working or not. When the scans came back with no progression, she dropped me down to 5 mg, and it still worked. Now my only side effects are acne and fatigue. It's a tough drug, though. I've had friends for whom it worked and some who really suffered taking it. Best wishes.
Oh thank you
I’ll see how I get on with the 7.5 mg but at least I know I can drop down to 5mg if I can’t cope
So pleased your coping better on the lower dose
All the best
Barb xx
Hopefully the lower dose will help and you will feel better.
Crazy pavement is a term used by radiologists to describe a particular drug reaction that appears in the lungs. It is a rare reaction to Afinitor. A pulmonologist went over the scan with me, and it truly did look like pavement that was askew.
Of course, you need to let the onco know if you are feeling really sick or tired, bc they are not mind readers, so if you do not speak up, they will think you are not having problems with the dosage. At the beginning of my treatment, I was given 125 mg. of Ibrance. My week off was the worst. I knew nothing about treatment or how it works, since I never did chemo, radiation or had my breast removed so I was new to the game.
I then realized after joining this forum board that there are different dosages to medication and that you can ask to try a lower dose. I never knew that so I learned that from this board. When I was put on Verzenio, highest dose first, 150 mgs. after two weeks I could not handle it so I stopped on my own and when I went back to see her told her. She lowered me to 100 mgs. twice per day (not breaks) and again I could not handle that so I stopped taking it after two weeks again. I waited until my next appt. and she told me the lowest dose was 50 mgs. twice per day so I tried that and that was the key.
But if it was not for this Board, I would have never even know there were different doses and people could ask.
I was very naive when I was first diagnosed. I just thought breast cancer was breast cancer. I had no clue there were different stages i, ii, iii and iv and classifications. I was shocked at how little I knew until I was diagnosed with it.
I hope the lower dose makes you less tired. I don't like to complain too much on this board bc many of you women have had it so much worse than me and handle it like troopers. For me this was not a reoccurrence. I would be devastated if I went through chemo, radiation and had my breast removed ONLY to have it return. I feel awful when I see younger women getting the stage iv diagnosis realizing I had been healthy for most of my life and never even spent a night in the hospital.
So compared to other diseases I have read about, and the stories that I have read on this board, I realize that many of you have already been through so much previously and to have to go through this again, has to be devastating. I get strength from this board bc I have nobody else to talk to.
(PS: I just wish I had a horse. I am not an expert horse back rider by any means, living in Brooklyn, NY LOL). It just seems (since I do not drive a car either) that it would be so nice, when feeling overwhelmed, to go riding a horse to clear one's head. I have ridden horses in the past but always on those group tours, never by myself. )
I hope this lower dosage allows you to spend more time horseback riding.
Yes. I too had a cough.
Hi barb
Please can you give me some words of wisdom . My love affair with ibrance has come to an end so was told yesterday I will be switching to the same treatment plan as you . My progression is to liver . To say am scared and heart broken is a understatement. Please can u give me any tips , do you have any hair loss ,do you still have bone strengthening injection xx hope your doing ok not reading many post off you lately I love to read about your journey and your Frank and funny comments take care
Mandy xx
Hi Mandy
I felt exactly the same as you are feeling now when I had to start a new medication...in fact I had a tantrum one day and told my hubby I wasn’t going to take it as I’d read up the side effects and they were hideous
Obviously I did start the Afinitor and aromasin (Jan 1st!!) since there was no choice
I did two months in the 10 mg dose Afinitor and the main complaint was extreme fatigue and anaemia so I asked to be changed to 7.5 mg which I’m managing on...still tired and anaemic and have just had an iron infusion
I’m not getting any of the common side effects I.e mouth sores or skin rashes thank goodness but my appetite is poor and I’m quite thin....only 9 stone 4 lbs and I’m 5ft 8 inches....so I’ve dropped a stone and don’t like how I look...my hair is thin but the hair extensions I have are brilliant ...some of the fatigue is maybe due to not eating enough... it’s easy to blame any symptoms on the new drug when in fact it may be something else
Go into your new regime with positivity...(not like me) and you may be surprised and find theses drugs easier than Ibrance which is hardly a walk in the park
Keep in touch
Barb xx
Thank you so much barb for your reply will let you know how I get on take care happy easter to you and your family xx
Yes keep in touch as there aren’t many of us on here taking these meds and it’s good to share our experiences
Barb xx
Afinitor and diabetes and other questions.
change in meds to afinitor & exemestance
