A little background, I was diagnosed with MBC after a fall and a broken hip Nov. 4 2018. I heard the docs talking about my oncologist, didn’t have one as I didn’t know I needed one, while I was in recovery from a partial hip replacement. Surprise, like the hip issue wasn’t enough! I had HR+Her 2 – back in 2004, recovered and never gave it a second thought. On Nov 27 while just walking as part of my PT the left hip broke and I again am in the hospital for a second partial hip replacement. Life can really suck sometimes.
I’m on my second oncologist, as the first was totally incompetent, the new one is wonderful and has a dedicated oncology pharmacists who calls me at least 3 times per week to see how I’m getting along with my new best friends “Kisqali and Femera “. The doc recommended Kisqali vs Ibrance as it doesn’t have the blood clotting side effect since I already had two of those while in the rehab hospital.
Now the panic issue: I just finished my second round of medicine and the pharmacist is talking reducing the dose because of the usual side effects: chills, fatigue, pain, etc. For Kisqali the reduction will be from 600 mg to 400mg as that’s the way the pills come in 200 mg increments. I had read so much on here how many of you are fine with the reduction as it supposed to work the same but now that my time has come I’m not nearly as okay with the decision as I thought I would be. We haven’t even gotten to my first set of scans to see if it is working. The pain has reduced over the past two months but I can’t tell if the pain is lessened due to healing from the hip surgeries, arthritis medicine, or less cancer but it has reduced. I did have 10 rounds of radiation which has caused lymphedema in my right leg where the surgical scar is located.
Anyway, I am just ranting a little today to alleviate the panic and to say hello. I’m 68 and a retired accounting professor who needs to finish her taxes soon. We should get a pass from the IRS with this disease but I know that won’t happen. Blessings to you all. You are such a blessing to me!!!
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Thrifty51
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If I was you I would ask your oncologist if you can have a scan first before reducing the dose unless the side effects are unbearable
I’m on Ibrance which is similar and was put on the lower dose almost immediately due to low neutrophils after 2 weeks
I know we’re supposed to follow advice from the professionals but also I think we should sometimes question things as well especially if not happy about something
I was adamant that I wouldn’t take my oncologists advice about taking an antidepressant and argued for a couple of months but in the end I gave in and I’m glad I did now ..I think she thought I was being difficult but I like to have some control over my treatment
Thanks for replying. I will ask the doc for scans before changes. Most of my treatments were delayed while I recovered from the hip surgeries so I did not get a base PET scan until the first of February. Of course changing oncologist added to that also. I hope insurance will cooperate.
The pain makes me depressed and I’ve tried taking the strong meds that some ladies on here told me I should do..and it makes sense..but I feel crap on them they disturb my digestion without going into detail!!!
Do you know if taking the 20 mg citalopram will bring back the horrible side effect that we had to put up with when starting the 10 mg??.. don’t fancy all that again..I’ve lost 7poundd since I started those
Not sure but I’m feeling TERRIBLE today and I only increased yesterday. My pain is okay. It’s my emotional pain realising all the things I wanted to do with my children are now not possible. I still can’t use my legs properly since my operations. I want to believe I’ll make 5yrs but I have so little energy and I’m so stressed. Most people on here are so positive and I feel bad posting negative thoughts X
I’m very low today..my husband just gone off walking with his friend..went golfing yesterday..will be golfing tomorrow..I just feel as if I’ve been written off!!
I’ve put my horse out to grass for a bit as I’m in pain if I ride..guilty if I don’t
A woman who used to live next door to me years ago heard about my diagnosis and contacted me the other day and we arranged to meet for coffee today..I’ve cancelled it..just don’t want to go over it all and her asking me stuff..I know you shouldn’t isolate yourself but on the other hand I’d rather be by myself or with people who actually care about me
I’m afraid I’m not coping too well recently but hoping my iron infusion will perk me up
I’m going to make myself do some yoga stretches then maybe go for a little walk
I’m having a rant..I should be boosting your morale not moaning about me!!..sorry
I’ve just started a book called ‘the cancer whisperer’ by Sophie Sabbage..I like it..she’s not bossy telling you to do certain things..just writes well and I could identify with her..have read a few books and this is the best..all the others I felt were out to make money out of us
Please don’t worry it’s good to hear you feel the same as me. I’m not up to social engagements either. I can’t even manage to interact with my children in a normal way. Just been on the phone to my nurse who’s organising some mind support X
I did see a therapist for about 4 sessions but it wasn’t for me I’m afraid...I need to be active and mixing with my horsey chums but so tired and not motivated..it’s easier dossing about reading but I know it’s not good for me mentally
I’m going for a little walk just to get a newspaper and some fresh air
Morning Barb! It is ok to feel a bit blah and cancel the coffee date. Rest up if you can. Enjoy reading your book. Thanks for mentioning it. I have not heard of this title and will look into it.
Hope your spirits are higher since you wrote your post.
Pisitive vibes are coming to you and the gals on this site.
You’re so kind..the ladies on here are brilliant and it’s good to know I’m not alone
I’ve let my appearance go a bit and I have a partners meeting tomorrow so I’m going to sort my hair out as roots are showing!!! I always put lipstick on though even if I’m just in the house..peculiar!!
Don't feel bad. Do what you need to do. I feel the same way about social engagements and you are not ranting. We need to share our feelings here! It is a safe place with women who totally understand this mbc rollercoaster!
Hopefully you will feel better very soon. The iron will certainly help as will your change in dose!
I’m just feeling washed out and it seems everyone is having fun and I’m being left out..having a wallow!!..got my bunny rabbit out and he’s hopping round the lounge..makes me smile..sometimes it’s the little simple things..it’s always animals with me
I'm still going through depression! I'm still in shock over this dx.
I'm just trying to take it one day at a time and praying, going to meditation classes, taking xanax for panick attacks and getting ready to start effexor for my depression.
I f I didn't have this site I don't know how I would ever cope!
Depression is normal for us. Living with this beast mbc is a rollercoaster ride emotionally and mentally. Physically can mess us up big time. One day at a time, sometimes one minute at a time. There are good days and bad days with this. I don’t believe anything we go through is negative/vs positive. There are just many feelings and states of mind while dealing with this. We all do the best we can with it.
Takes time and I still have bad mental days😘I take lexapro at 40mg- known to have very few side effects and I haven’t had any. I was at 10-20 mg then mbc came along so now it’s 40.
We can do amazing things for our children. You will also💕💕
Did I ever tell you that I learned that pain pills themselves can cause pain? My brother told me that first, he had been in a wreck and injured his back. Then when I got off of them alot of the pain went away. I know we're all different but I just had to share my experience with you. Since I quit the pain pills, I take aspirin and Tylenol alternately, and at night sometimes I take a Tylenol pm with a regular tylenol. When I broke my leg, they were giving me morphine and fentanyl shots non-stop, and I think that's why when I came home after 7 days of that, the pain medicine was only working for 3 hours when it was supposed to be taken every six, so I had to change something or start chugging pills, and like you said, they have their own side effects and hurt our digestion. Hope the iron infusion has you feeling a bit stronger by now. God bless you and heal us all in Jesus name, amen! God does love us and we, with Him beside us, have a beast to slay; some never get the chance to fight for their life, they are just GONE instantly; glass half full ... ME! <3 The bible says in Eph. 6:13 So put on God's armor now! Then when the evil day comes, you will be able to resist the enemy's attacks; and after fighting to the end, you will still hold your ground.
There’s a lot of truth in what you say about pain meds..trials with patients using one group on pain meds the other on placebo..pain reduced in both groups..even after the placebo group were told it was a placebo they still wanted to take the pills because they worked!!.. power of the mind
I’m not religious really though I was brought up Roman Catholic and convent educated and some of it will always remain with me but I also have a medical degree (dental) and the scientist in me questions everything
The power of the mind is an awesome but kind of scary thing at the same time! My hubby and family from Southampton, England are all Roman Catholic but he now goes to church with me, Methodist at present, I like going to different ones on ocasion. What those nuns put you all through! I would be turned off too! RCPTSD! let me know if you get it! God is big enough for all our questions! You can bet I was hollering WHY GOD! <3 Oh, back to the pain pill phenomenon ... after 7 days, no pain pills, I decided on the 8th night that I could have just ONE to cure my aches and let me sleep well, emphasis on sleep, because since the letrozole it's been scarce. Well, I did sleep well but for the next TWO days I was an emotional mess, crying at the drop of a hat and in a miserable mood. So that's when I knew, something had changed in the old bean! Once you develop a tolerance to it, does it ever go away, where you can take a pain pill like a normal person on occasion without going through some sort of withdrawal? not expecting you to have the answer but you've done a lot of homework, I know, and I'm at that age where I can read a lot but retention is the problem! laters ... oh by the way, I'm in a funk a lot of the time, not all roses over here at all! And I haven't even started the ibrance yet so I kind of feel unqualified to even talk about any of it yet ....
I messed about with zomorph slow release last week and ok the pain was less but I decided to take a quick release oxycodone before I got on my horse on Sunday..big mistake..felt so I’ll i thought it was the anaemia but now thinking about it..was the pills..luckily I didn’t pass out when on board as that could have been a bad accident ..I suspect my BP dropped
I’m just going to take paracetamol and ibuprofen and if necessary top up with an oxycodone if doing something strenuous
Seeing my GP Monday so will ask her advice..whole things a nightmare ..it’s odd that you noticed such a reaction from just one pill..was it codeine?
it was hydrocodone/acetominophen 7.5/300, which is tylenol/paracetamol by the way. I read that ibuprofen is bad for you so I only take tylenol and aspirin. have you read that about ibuprofen? yes, this is a nightmare, I agree. I have always been funny about medicine because most of it makes me sick or I can only take half ... WAY before cancer entered the picture. I have a very sensitive system. I'm so glad you didn't fall off the horse, that would have been bad. I am scared of falling now, which I never was before, and off a horse is just scary to think about with all the moving parts. I never will forget, we rented horses one time at the beach and the horse was puffed up while the saddle was put on, so when I jumped up in the saddle, he let out his breath and around I went with the saddle and onto the ground. He stepped on my hand and NOTHING broke! still amazed at that after all these years as I was only 17! thank goodness for the thick sand, saved my hand!
yes, I had minor sleep problems before but it definitely made it worse where I could hardly sleep. I tried taking it just M,W,F and have slept better; but the unknown result of not taking the correct dose outweighs my worry about sleep and anything else, so I ditched that idea and taking every day like prescribed. God bless you and heal us all in Jesus name, amen! <3
Okay I think we can say increasing to 20mg is going to have the same effect. I’ve been a total loony today. Now I have the dilemma of whether to keep going with it. It’s scary isn’t it?
It’s a bit of a dilemma..I’m going to talk to my doctor on Monday re the reemergence of side effects with dose increase..if that’s true then I’m not sure what to do.. nightmare
I was just feeling some benefits to being on it so I do think increasing it will help so I almost think I can’t go back now. I will let you know how I am x
I just feel nauseous..acupuncture lady put those little seeds on my wrists and I press them and it helps a bit
Went to yoga this morning and had to stop for about 5 mins as felt quite weak..carried on though..might not be the citalopram as I was fine last week did some walking
It’s great that you can do yoga. I walked up a hill for the first time since my operations. I was thinking of going back to my yoga class but I will be so weak compared to how I was and people will ask where I’ve been etc X
I was reduced after the first round, they lowered my dose but don’t want me to take it until my white blood count goes up. It’s been 2 weeks now. I hate that I’ve been dropped from 125 to 100 and am on-hold pending a positive blood test.
Not many ladies tolerate the higher dose..the 100 mg works just as well according to studies..why give us the high dose baffles me
Barb xx
Hi!
First of all, I just wanted to say that your picture is beautiful! I would guess you are 50 from your picture, not 68.
I have sought advice from pharmacists since my diagnosis, but I would suggest you talk to your oncologist first. I would not want to make any decisions about reducing the dose of your medication without discussing things with your oncologist and seeing the result of your scans. That is so important. If they show a reduction of tumours and/or stability then you might want to stay with the current dose.
Thanks for the sweet comments on the pic. It is a year old but the only one on my computer and I just had a birthday. I do take after my sweet late mom who always looked younger than she was.
I am definitely asking for scans before changes to dosage.
Thank you for the reminder about Kisqali and blood clots. I am on my 23rd cycle with Kisqali & Letrozole with minimum side effects, but now my markers are up and Ong wants to switch me to Faslodex, which would knock me out of my clinical trial and cost me $3,200/mo. I see my Onc on April 10 and will ask about the reduced dosage for another opinion. By the way my Kisqali/Letrozole never reduced my bone mets, my scans just showed I was stable. Are you also taking Zometa injections or similar for bone strength? Lastly, I'm surprised your Pharmacist rather than your Ong was calling the shots regarding reducing the dosage.
Thank you for your recommendations. I will see my oncologist April 1 after my week off of Kisqali. There will be no changes until then and of course new blood work. I did have to take two weeks between 1st round and second one to allow WBC and RBC to recover. I don't feel that I am as fatigued as I was then but still dragging.
Wow. I am impressed with 23 cycles on Kisqali. Although we would all like reduced bone mets, I'll certainly take no progression for 23 months as a success (I think). I'm sorry as I did not mean to give the impression that the pharmacist was making the decision. She and I will talk to my onc April 1 about it. The pharmacist brought it up on the phone for the first time yesterday as she calls a lot to check on me and any side effects from the Kasqali. I think she was mentally preparing me (maybe).
My old doc gave me Zometa infusions but this new one that I've had since the middle of January recommended Xgeva shots. She is all about keeping all appointments down to one day per month and having everything done in one trip. At my second appointment with her I had blood work, saw the PA, saw the doc, talked to the pharmacist, got an ekg and then had my Xgeva shot and was in and out within two hours. I was impressed. My old doc would leave me sitting in the waiting room for two hours.
Probably wants to reduce because of the fever how high was the fever and if the fever was every day because if you have fever every day that isvsign of infection probably your white blood cells are very low ask about it
hello, Thrifty! So sorry you have to join us here but so thankful we have this place to come and share, vent, cry ... and no one points fingers but I see some of the sweetest people on here helping each other. I know many have helped me get through this. How horrible to have a hip break while you're just walking! I will pray for you, that things will get better, and I, like you, would want a scan before the medicine dose was lowered. I had a 4.5 tumor in rt. breast in 2013 and had a lumpectomy with 8 lymph nodes removed and 30 rads; had to stop short of 32 due to severe burns. I never looked back or even thought of cancer until a few months ago, when being x-rayed for a shoulder injury the doc said my bones didn't look right. I am taking letrozole and have 2nd appt. with the onc. next month. i shared this with another lady, and now I want you to have it too. I feel blessed that God let me know about this in time to save my life. Many people are just GONE without a chance to fight! So put on God's armor now! Then when the evil day comes, you will be able to resist the enemy's attacks; and after fighting to the end, you will still hold your ground. eph. six 13 God bless you and heal us all in Jesus name, amen! <3
So sorry to hear about your situation! But I think lowering dose is scary but from everything on this site, oncs tell us a lower dose is just as effective with less side effects. You will probably feel better and have a better quality of life.
Prayers to you for a quick recovery!
So happy you found a new onc. It is so reassuring to have faith in them.
And, you are not ranting. We are all here to listen and be here for each other.
Hang in there-this is a great group of ladies here . This site constantly reassured me and I read and learn from everyone. I am with stage 4 that has metastasized to the left femur but after scan a lot has stabilized or disappeared with God and Ibrance, Letrozole. I heard that sometimes the cancer is discovered with a fall happens or the bones break. I hope your not in a lot of pain . I am on my 4th cycle of Ibrance the end of it but so far I am not in any pain except for this heel spur-Achilles tendinitis . Living day by day as all of us do-Thank God I am alive.❤️
That’s reassuring re the dose increase of citalopram as I do feel I need the 20 mg now..also thanks for laxative info..I feel like I have my own personal physician!!!
Going to the cinema in a bit to see ‘Us’..apparently very scary..I love horror movies (as long as they’re not stupid stuff but psychological) so that will take my mind off things..I’m a movie buff and have a massive collection of films especially film noir from the 1940s
Hi I have been looking into cbd myself and would like to try it but I was watching something on YouTube and it was saying how it could help but to be careful if you were on ibrance which I am as in can contraindications with it. I wish there was someone to talk to about it but my onc is only interested in the drugs . When I was first diagnosed I mentioned homeopathy which I have used for 30 years as I am not good with conventional medicines .The answer was an adamant no .Have you any more info you could share .Its just a case of trying to find a little feeling of normality in our lives I don’t want to climb Mount Everest .I would just like to vacuum my house or clean my windows without feeling wiped out.Eh! I’m sorry if I’ve ranted ,forgive me .
Yes I knew about them but this nurse Karen on you tube was promoting the cbd oil and she said to find the dosage that suited you etc and then right at the end she said of cause it isn’t the same for targeted drugs and she mentioned ibrance something to do with the receptor pathways that the ibrance use .Too much for my tiny brain just made me more confused, I think your onc obviously will know all about that. It’s good to find someone I can talk to about .Thanks again from a little old confused woman .xxxx
I’m just reading another biography about VivienLeigh...she was so beautiful but suffered so much with her manic depression ..yes Gone with the Wind is one of my all time favourites
Did you know that Clark Gable had full dentures?... ruins Rhett doesn’t it?..I wish I didn’t know that lol
It just amazes me that this can come back after so long. Maybe you can wait another month. It has to be so difficult tell the difference between the meds and your hip. I hope your feeling better soon.
I do meditation on YouTube for anxiety. Today I have Reiki, my first time!
My doctor told me yesterday that my job is to take good care of myself. I’m going to take notes and see if all of the meditations help with my blood count.
Hi Sandra, you are so kind to be concerned. Yes in addition to the other meds I take Citalopram, Diazepam and Zopiclone for sleep. That is quite a cocktail. They think I have PTSD from my hospital experience (I broke my neck and also had rods in both femurs). I don’t like taking so many meds but I’m seriously depressed, I think it was triggered by the aesthetic, coming off morphine and shock of diagnosis X
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social distancing while on Kisqali
Side effects of iBrance vs Kisqali
