That’s what the onc told me today. We are meeting Weds to discuss future
treatment. I was stunned! I have been feeling good and thought I was stable.
Now I feel that I am facing the end. First time I have had this severe
reaction.
Ibrance not doing its job: That’s what... - SHARE Metastatic ...
Ibrance not doing its job
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Gwennie123
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Oh Gwennie,
I know how you feel. I am on my third kind of treatment, hoping it will continue to work. Currently on piquay and fasamax (sorry might be mis spelling it). Hang in there, there are many treatments around, and more to come. Sending a virtual hug to you.
Hi! Im very wordy; but I hope this helps you.
I’m on Ibrance exactly 2 years & although in back of my mind “I always am waiting for ball to drop”; however, try to relax; cannot believe that’s all the INC said & now you have to “wait” out your new game plan. I’m told there are “numerous meds that’ll work for many many years! Course individually, some are actually on Ibrance 8+ years (per my INC from UCLA who was in in original discovery before and after trials Batam—he knows a woman 8 years though the average is 22 mos. as of 2017 when I started this Med regime. In the ~10 years, 6 surgeries & lotsa pain & cancer meds since onset of stage 1 & this “battle” (is what I prefer to call it vs journey), I’ve noticed 2 things:
We are fortunate to having been given this Opportunity to
1. Though stage 4 breast cancer is no longer a death sentence as it once was likened to pancreatic cancer; to me it still is a death sentence but it allows one to “live” while dying (if that makes sense. You no longer hear you have stage 4 breast cancer with X number of months; this it has been dubbed a “chronic condition”; but I still daily & mostly in the quiet of the nite whilst I cannot sleep I know it is a “terminal” diagnosis. I know that this happens to us so that we are fortunate to “know” so when time comes family will say “thank god (ie whoever spiritually they believe) she/he are not “suffering anymore! I believe also God’ll never gives you more than you to handle (though not all can handle what God gives them—so only some truth to the former) or whatever religious figure you have.
I always know that somewhere in the world (probably rite next door to me) there are soooo many less-fortunate person(s) & that helps me avoid the pity party which sometimes creeps outside of me “sideways” & I’m hysterical crying at nothing. I hate cancer drug commercials & movies with the mother dying of cancer!
Not all who get Dx of cancer (no matter the age; I’ve known 2 family members under 6 years old; one at age 40; age 55; 65 &70-80 year-olds—survive & they’re gone in blink of an eye. (I don’t know how long you’ve had cancer; but I guess I look at this battle as glass half full—I’ve lived 10 years when some are “dying” the minute they are diagnosed with or without a battle. I believe life & death (not in religious way—though I am non-practicing catholic) are random. Just as one man died sitting in his living room and whole house dropped rite into the earth via a sink hole, some are struck by lightening, or worse. I don’t think I’ll ever be ready to here the words “there’s nothing more we can do for you (not that you are there yet & I hope very far from it); yet I also do not want to “battle” or fight to survive by any and all means necessary my quality of life is most important to me & then I’d like to say goodbye and let go quickly without pain & suffering as I’ve actually my watched that and it’s torturous for the patient but often almost worse for their families to have to watch!
2.
Bailey3266...your words really resonate with me ...“I also do not want to “battle” or fight to survive by any and all means necessary my quality of life is most important to me & then I’d like to say goodbye and let go quickly without pain & suffering”
I’m sure I’m at the end of my Ibrance treatment as I’ve now developed mets to my liver although bony mets have healed
My oncologist hasn’t changed my meds yet and is trying to keep me on Ibrance longer hence having radiotherapy to the liver
She has assured me however that there are more treatments out there but like you I just feel sad that this is the next step downhill.....she’s talking about Afinitor and exemastane as my next line of treatment...of course I’ve looked up the side effects and they’re horrible but then so are the Ibrance side effects....it’s just the thought of the unknown which depresses me
I’ve been sorting out my will recently and that’s upset me...I want to give my daughters most of my money as I’ve got this idea that if my husband remarried then some other woman will benefit and that thought haunts me sometimes...i can easily get morbid about the reality
I’m sorry this post isn’t very uplifting but it’s how I feel and probably just how you feel at the moment...I’m crying while I type this
We must try and just plod on and do our best
Love
Barb xx
in reply to Barbteeth
Hi Barb,
You have been going through so much lately.I wish I could reach out and give you a hug.
I haven't written a will yet, but I should. So you are ahead of me and sound really organised. I have written letters, a list of my possessions and how I would like to bequeath them, along with funeral plans, but that's as far as I have got. I am also planning to compile a list of agencies and organisations that need notifying if I die.
I don't think you are being morbid at all with your wishes. I would not want any future wife of my husband's to have any of my possessions either! Although he has assured me that he would not remarry if I died, and that's a big "if" as I am confident that we will see a cure.
I am waffling on now! But just know that I am thinking of you and hoping for a good outcome with the radiotherapy and what will come next.
Sophie 🌹🌹
in reply to
Sophie - I went ahead and updated wills, found a local hospice for what I hope is a long way down the road, checked my beneficiary designations on bank accounts and insurance, etc. after I recovered from hearing I have MBC. I know someone who learned a few weeks before her brother died that he hadn’t changed his beneficiary from an old partner no one liked any more, including him. Fortunately he mentioned this to his sister who was asking about his estate plans. She helped him execute a beneficiary change to his parents before he passed a few weeks late. He had forgotten all about it and was relieved she brought it up.
For me, it is helpful to have that taken care of now so it’s not left undone or is hanging over my head as a reminder on my to do list.
I expect you know this but please allow me to suggest that your letters are lovely but they have no force. I’ve seen and heard too many stories of folks fighting about big and small material items after a loved one dies. My feeling is that having legal documents lined up is essential in order to reduce quibbling and hard feelings. FWIW
in reply to
You're right, Martha. I do need to get on with it and execute a will. I have never done this before, so it's all so new for me. My mum died intestate, and my dad had to go through probate to become her beneficiary as next of kin. I didn't ask for any money, just her jewellery and a few other personal possessions. It was a bit complicated, so I see where you are coming from.
My letters were more for informational purposes if my husband survives me so he would know what I would want at my funeral and so forth. I know that I would need a will for my wishes to be legally binding. It's something I need to add to my ever growing to do list, but like you, I hope that it's many years off!
Sophie
Barbteeth in reply to
Sophie you’ve done more than me...I’ve just got in touch with a solicitor who happens to be a friend as well and he’s just started to draw it up...I must confess I have made sure that my horses are looked after as I don’t want my husband to have them put down just because he thinks they cost too much...which they do lol!!
I just find the whole subject hideous
Barb xx
in reply to Barbteeth
Barb - yes, it is lousy we have to do. But, not only will it make it easier for my family, but it actually makes me less stressed knowing it’s taken care of and it’s not looming over me. Then I can focus on other nicer parts of my life
in reply to Barbteeth
Hi Barb,
I agree that this topic is hideous. How can it be anything else? I don't blame you for thinking about your horses' welfare. You don't think your husband would put them down, do you? I hope he loves them as much as you do. I need to just give myself that push and get this done, and then I hopefully won't have to think about it again for a very long time.
Sophie x
Barbteeth in reply to
Sophie he’s never even seen my horses...I’ve owned Monty for 14 years and Bugsy for 12....he’s just not interested in the things me and the girls do when it’s horse related....he never ever came to see any of us compete....I suppose he’s just selfish....if it’s not about him etc!!!
He’s always made sarcastic comments about the cost of their upkeep but as I pointed out it’s my money and I’ve worked bloody hard for it!!!... now I’m in this situation I’m so pleased I did squander money on them as the children had such fun with their ponies when they were small and had a lovely childhood...also I don’t spend a lot on clothes make up holidays etc and drive a crappy car so I don’t have to justify anything
He would definitely get rid of the horses I’m sure of it...hopefully I’ll outlive Monty as he’s old now but Bugsy probably not
So that’s how it is
Barb xx
diamags in reply to
When I was diagnosed, I got down to the will, power of attorney and all other things that were hideous about my eventual demise. I was already in death mode, so why not go all out? 
I have to say that now that it's done, it's a huge burden lifted. The process was upsetting, but I'm so happy it's done. Another item checked off the list that I don't have to concern myself with. I would just do it. Go the "Band-Aid" way -- rip it off fast, don't do it slowly and painfully.
in reply to diamags
Thank you! I hadn't thought of it like that before. I have a lot going on at the moment, so I think when things settle down a bit I will bite the bullet and get down to it. x
diamags in reply to
You can only do it when you're ready. And you'll know when that is.
I just thought I had a year or two and did it. I was horribly upset, my husband's family was suing us at the time, and it was just one more hideous aspect of my life right then. With that said, it's now something that just is.
We can talk about it, change things, etc. It doesn't mean I'm dying right now, it just means that when I do, all things I want handled are handled. But it was not a joyous process to go through but I'm extremely pleased that it's done.
in reply to diamags
Thank you! I agree that I will probably know when I am ready to execute a will. I don't want to bury my head in the sand and not do it and end up intestate like my mum and also her dad did. It caused no end of headaches for my family having to deal with all that.
I'm sorry to hear about your husband's family suing you. What a horrible situation to have to go through. Sadly, some families are like that. My mother-in-law went through a similar experience many years ago when my father-in-law died (when my husband was a child). Two of her daughters tried to sue her because they did not agree with how she handled her husband's estate. They felt they were owed a share, but when all is said and done it was her property to distribute how she saw fit, and my husband has never felt bitter or jealous that he did not get any of the land or money, and nor do I hold it against her. So if I die before my husband I would not want anyone other than my husband and a few other beneficiaries to get what's left, not anyone who had no part in my life.
Sophie
in reply to diamags
I already took care of everything also. I dont have much but since I have no family I had to give a good friend a legal doc. my last will and testament so she can come and empty out my apt. and take what she wants, power of attorney, payable upon death at my bank so with her photo id and my death certificate she can take out the few thousand I have in there for her expenses and she is my health care proxy. She is aware I do not want a funeral (waste of money), just cremation and nothing more. That is all done but I need to get her a list of calling SSDI to cancel, cancelling my pooled trust fund, Verizon account information, MY ll's name and phone number....and stuff she needs to make sure is taken care of. I feel better knowing that that is all done already.
in reply to Barbteeth
I was lucky enough that my cancer center has an attorney on premises. I have done six months ago (and I have been stage iv) just about two years. A last will and testament and notarized by two other attorneys who came to the cancer center just to be witnesses.
It is kind of a joke bc I have nothing of value but since I have no family, I have to choose a friend who is married with no children and lives in FL, as the executor just so that when it happens, she has legal right to come into my apt. and remove everything and take what she wants and toss the rest (I have nothing of value).
I also did a POD (Payable upon death) at my bank. I only have a bit under $10,000 in my checking, but I went into Chase, filled out the form required, and when that time comes, my friend in FL just has to show her photo ID and an original death cert. for me and she can immediately get all the funds that are in my checking right there even in FL. I have to leave that money in the bank so that it does not cost her or her husband a penny as they are not wealthy either.
So I need to leave them enough to fly from FL and come here and pay moving men, etc. The attorney also did a Power of Attorney for me with my friend named and also health care executor. My friend knows I want to be cremated, and NO memorial service. I figure I will be gone and funerals are for the living so why waste that money. I told her cremation and no service at all.
Plus I provided an informational packet so that she knows to call SS to stop payments, the name of the social worker at my cancer center, the name of my LL with phone number and to call Verizon , shut off my service.
I just feel better knowing that all this has been done already and is one thing off my mind.
Hi Barb, we seem to be on the same path at the moment. I had a ct scan at the beginning of December and see the oncologist on Friday to find out what's going on. It's been a very long 3 weeks!
I was taken off the afinitor for nearly 3 weeks as I was struggling when I caught a cold. Now back on it and the side effects are a lot better this time, they are manageable. If you are put on this it is tough but not impossible and gets better. After my experience with letrazole you might even find it easier than what you have been on. Most of my problems have been mouth related - and you are the expert on that part of the body!
I sorted my will out last year - strange experience as the solicitor was a planning solicitor I knew vaguely from the council planning committee. She started talking about long term financial planning and I explained that I needed provision for if the future wasn't as long as I hoped and she burst into tears! I had to comfort her! Anyway, I've tied up my part of the estate in a trust for my children. Expensive to set up but tax efficient and means my children have as much protection as I can give them from any future gold diggers or the local authority. And my husband will have to negiotiate with them if he wants to move or buy a new property with my share of the estate. That has given me so much satisfaction.
Wish me luck for Friday, I'll let you know how I get on 🙂
Julie xx
Fancy having to wait so long for your results...I never have to wait more than a few days...seems cruel to me and I admire your fortitude
Thanks for info about Afinitor...I just dread changing meds...the devil you know etc
You seem to have sorted out your will to the benefit of your children I’ve left my money to mine ...the house and business to my husband
I don’t even like to think of it
I wish you well on Friday..
Barb xx
Yes, and there is not one person that you and I will look in the eye today that is NOT dying; they just don't know when and neither do we. Some pollyanna thinking but it's true, is it not? Fiddling with my will makes me ill! I hate it and even after going through an atty. and getting it done almost 5 years ago, I now don't like the way I set it up so it's never exactly right, is it? i.e. hubby was supposed to go FIRST grrrrrrrr now we don't know WHICH one will go first, not that we ever did! it's insanity trying to get a will just right, innit? <3 xo
Barbteeth, I know I've said this before but maybe not in a post you were involved in. I was ion ibrance for 6 months. Didn't work at all, nor faslodex. I've been on Afinitor and Aromasin for a year and 6 months. Honestly, it's been very easy. My hair is very thick but dry. I use a good conditioner. I wash my mouth out twice a say with the prescribed mouthwash whether I have a sore or not. Seems to keep them at bay. I do a lot considering I have cancer in my ribs, spine, shoulders and the front of my hips. It's been an easy road for me. I'm grateful to God for that. I have a pet scan early January. They think it may have quit working. I was hoping to be on this for a few years.
Hi, do you mind me asking what dose of afinitor you are on?
Julie, I started on 10 mg of Afinitor and 25 mg of Aromasin. After a year I started having a rare side effect. Bleeding in my eyes like blood vessels were breaking. I'm now on 5 mg. Still 25 mg on the Aromasin. I'm praying it hasn't stopped working as it's been so easy for me. I do get the sores on my head but that's no big deal. 1 or 2 then they go away. Then come back. The Oncologist told me the biggest deal was to drink tons of water. I drink about 60 oz. a day. I also eat a lot of fruit and vegetables. I'm around kids at Church and have only had 1 cold the whole time I've been on it.
Thank you, that's interesting. I'm on 10mg and feel it's too strong for me.
I've been on it since September and only realised yesterday how much more water you need to drink with it! I've had horribly cracked and broken lips and it occurred to me yesterday that they were better after I'd had a drink and really painful mid afternoon when I hadn't had drunk for a couple of hours. Today I have drunk continuously and for the first time in months they are bearable! I don't have any open cracks tonight!
I had a cold in October and it knocked me sideways but now restarted and side effects are a lot better.
Julie, glad to hear you're doing better. Apparently, the drinking of a lot of water is also for your kidneys, as this drug can affect your kidneys without a lot of water. The oncologist also changed me from percocet to oxycodone without the tylenol. He said any drugs we can keep from filtering through the liver is better. We've just moved and saw my new Oncologist for the first time last Friday. My Oncologist back home leaned towards breast cancer and spent a lot of time studying. There are no Oncologists like that here so it's a bit scary. When I get my pet scan in January it may be it for me if the Afinitor has stopped working.
Starting with a new oncologist is always hard. I hope the afinitor is still working for you as it seems to suit you. Even if your oncologist isn't a breast cancer specialist I'm sure he will have a treatment plan. Mine seems to a jack of all trades but has a good reputation.
I get my scan results tomorrow. Oncologist has said that if the afinitor isn't working the next step is 12 weeks of taxol which I know is probably the best option but I really don't want it yet.
I'll keep my fingers crossed for you 🙂
I felt the same way earlier last week when I received word I had progression. Don’t give up. Chemo can do wonders and several woman told me they felt better in chemo than with ibrance.
in reply to
That's really encouraging! I have not had chemotherapy, but am not against the idea if it becomes an option in future. It is good to know that it is tolerable, and perhaps more so than some treatments.
Sophie 🌻🌻
in reply to
Sophie - I share your concern about chemo. I had rough times with chemo in my two earlier diagnoses before MBC. The doctors say it’s better than it used to be but I’m apparently not someone who handles it well. I doubt I could do it again as it just makes me feel so much worse. I know my quality of life was bad then but at least it was designed to cure. If all it does in the future is make me very sick again but can’t cure I will have to find another path. It’s horrible knowing that’s down the road for me.
in reply to
Hi Martha,
I'm sorry to hear that you are not able to tolerate chemotherapy that well. My mum suffered when she went through it too. Hopefully some other treatment will come along that is gentler on the body, but just as effective in treating the disease.
Sophie
Godbeforme in reply to
my hubby went on oxyplatin <sp> after his colon cancer and surgery, and sailed right through it. the hardest part was making him drink water, because if you don't it will fry your innards! I was worried but he didn't have any neuropathy or problems until the very end of treatment; I think he finished one or two treatments early but he's my hero. The thing about chemo is you don't have to take it the rest of your life and it has the ability to wipe out the mets! <3 xo
in reply to Godbeforme
Oh, wow! That is encouraging. Thanks for letting me know about your husband's experience. How is he doing now?
Godbeforme in reply to
He's doing good, we have attic stairs in the hall and he walks up them a few steps several times a day. He had his sigmoid colon removed and doctor said they got it all and recommended chemo so he went for it, and that was 5 years ago. If I remember correctly he only had to go in a few times a week, I went with him, then he would wear the bolbus home, I don't think I'm spelling that right but it was the chemo in a bulb type thing that would continue to deliver for the next few days. I wish I had written it all down now because I am a hot mess when it comes to remembering details, maybe that's a blessing in disguise ... hindsight! lol xo
in reply to Godbeforme
I'm pleased to hear that your husband is doing so well five years down the road. I sometimes think it's a good thing not being able to remember certain things. Maybe it's a protection from bad memories. x
Godbeforme in reply to
I think so too, Sophie. love, peace and joy to you and family for Christmas! <3 xo
Barbteeth in reply to
I said from the start when I received the mbc diagnosis...no way will I have chemo...but who knows how I’ll feel in the future
One of the oncology nurses said to me recently that the chemo now is much easier to tolerate...hmmm easy for them to say...I don’t believe everything these nurses tell me as they’re programmed to make us feel optimistic
Barb xx
in reply to Barbteeth
Barb - doctors and nurses told me they manage chemo better when I endured it in 2004 and 2015. I know friends who handled it ok but not me. After I finished in 2015, one nurse admitted that the chemo I had then was rough on a lot of people. I wish they’d been upfront so I wouldn’t have wondered why I was so weak and nauseous if it is supposed to be less toxic now.
The mother of my SIL was given chemo shortly after her MBC diagnosis and it very clearly made her sicker and her last days unpleasant. What I’ve never heard explained is whether chemo doses can be less hostile and more palliative when in our situation. I expect the answer is no or I’d know about it by now.
Dear Gwennie: So very sorry to hear the startling news! Praying for good solutions/options for you. Also, consider getting a 2nd opinion. Make sure you know ALL your options & you are getting the best treatment for you. ❤️🙏❤️
Hi Gwennie,
I'm so sorry to hear that. It must feel like you have been kicked in the stomach. It doesn't matter how much we prepare ourselves for bad news, it's still hard to hear it.
I remember being prepared to hear that my disease was metastatic as I was sitting in the waiting room to meet my oncologist for the first time. But I was still stunned when she broke the news that I could not be cured and would be in treatment for life.
I hope that your next line of treatment gets to work immediately to push the cancer back. Hopefully it will work much better than ibrance for many years to come, or until we see a cure.
Sophie 🌷🌷
I was only on Ibrance (first line of treatment) for three months. I hated Ibrance although I know many women from other forum boards that are still on it 3 years or more and are still holding down full-time jobs. It just didn't work for me.
Now, I am on Verzenio. Always going to be some side effects but for me I still prefer it over Ibrance. My week off of Ibrance I felt like I was dying....I hated it. So you just go on to the second line of treatment. There are always going to be side effects but at least on Verzenio I do not get the kind of fatigue I did with Ibrance. (Although I could not handle the 150 mgs. of Ver., nor the 100 mgs. of Ver., so I am on the lowest dose which is 50 mgs. Verzenio is taken twice a day with no breaks.
It is not the end. There are other drugs that may work better for you. I was told from the beginning when one line of treatment stops working, they have several other meds to try.
I had the same in August. Completely unexpected as I felt so well.
But once the shock had subsided and with the help of the ladies on this forum I realised that I'd still got options. I went back to see the oncologist armed with a page of questions and he reconsidered my next treatment. I don't like my oncologist, he's rude and dismissive, but he listened to me and I came out feeling as though I was back in the driving seat and nowhere near the end of the road.
Also the realisation that I was going to have to go through this everytime a treatment stops working. But as long as there is another treatment to try I'm still going to put one foot in front of the other.
Jxx
in reply to Julie2233
Actually, I did not have progression on the Ibrance but it was my first line of treatment and I never did chemo, radiation or have a mastectomy since I was diagnosed at stage iv. All my onco told me was that food may taste strange. I never felt that kind of fatigue before...but my first week off the drugs (and I was so excited) was the worst. It was August in NY, humid as hell and I had turned off my central ac and I could feel how stuffy my apt. was. It would have been unbearable for most but I was freezing and I had on a wool robe and like four blankets and I was shivering and teeth chattering. I was so angry she never told me this. My onco does not respond to emails (she told me this from beg.). The second and third weeks off were just as bad and now I was having to take two hour naps every day. I developed an infection and because my immune system was so shot, the infection just kept spreading and even after five weeks of antibiotics and being off the Ibrance, the infection got so bad (in the past one round of antibiotics and it was gone) that I had to go through that surgery. So my onco did not put me back on but looking back now, she should have taken me off sooner. I learned that some women felt no different on their weeks off, some felt better and some were like me and felt like death.
So for me it was not progression. I didn't know much then and was not on any forum boards, but lowering the dose was not an option she gave to me. She is a bit flaky and I lost it with her two months ago and I said you forget things, you do not tell me what is going on and I am sick and tired of wondering and going forward, I want copies of everything. I said there is a patient portal but since you apparently put nothing in it, now I am going to have look at everything bc apparently the prior CT scan before they found the severe lung inflammation mentioned it and I said why did you not tell me this? You cannot keep this kind of information to yourself. She said Oh, well some radiologists are more detailed than others. I have caught her in outright lies and she always blames the staff. The staff told me she forgets things all the time and blames us.
So sick of this already. I was so glad to be off the Ibrance. She should have lowered the dosage the first time but I didn't know any better. Now, I learn more and speak more and the last time I lose it with her and she apologized bc she knew I was right.
Julie2233 in reply to
I think you need to find a new oncologist!
in reply to Julie2233
Maimonides is the best cancer center in Brooklyn. I already transferred from another hospital. They have social workers and lawyers (who helped me do a will and a power of attorney since I have no family so that a friend can take care of things). All the oncos work on one floor so it would look really bad if I requested a new onco when they all work on the same floor and I do not wish to make her look bad and then God knows what the new onco will think....Oh she is a pain in the next patient. I would have to explain to her why I would want to change in the same cancer center.
I have decided I was too naive in the beginning and now I am asking her hard questions and when I am upset I am letting her know. Last time I went off and I said this has got to stop. I need to know after my CT what is going on. I said going forward now I want copies of every test, every CT scan...bc I obviously have to keep on top of things myself. She knew it and apologized.
Julie2233 in reply to
You aren't making her look bad, her performance has been bad. You aren't the expert that's why we need our oncologists - what if you miss something?
She should be professional enough to realise that she will lose patients to colleagues. It happens all the time, even to excellent doctors and they expect it.
You wouldn't tolerate a bad hair dresser and accept excuses for an appalling hair cut or a perm that turned your hair green. Well I hope you wouldn't.
My oncologist is rude, arrogant, doesn't explain things and opens the door half way through the consultation to indicate that he thinks it's finished. But he has the best reputation in the region which is why I tolerate his behaviour. Rudeness won't shorten my life but bad decisions and poor treatment will.
I appreciate you've made your decision and of course I respect it but if her performance doesn't improve please ask to see another oncologist. From her treatment of you already she won't even notice you have gone.
You won't be the only patient who has experienced this, and the next oncologist will know far more about it than you do. He or she won't think badly of you for moving. They are professionals and should respect your decision. You don't have to explain anything to anyone, just say that it's your decision.
Barbteeth in reply to
Don’t worry about what your oncologist thinks if you swap to another one
This happens all the time in healthcare....when I was working (dentist) patients often used to change from one dentist to another....sometimes because they wanted a female dentist or vice verca..sometimes if the waiting list for treatments was too long with me they’re book with another dentist then come back to me at a later date
Your oncologist won’t be that bothered I can assure you and if they are then the reason is obvious
Barb xx
in reply to Barbteeth
I want to stay with the same cancer center...it's excellent and has loads of resources, but not sure how I could change oncos when they all work on the same floor. I mean even the receptionists know she is my onco. I do not want to make her look bad or diminish her reputation at Maimonides and I would not know how to explain to her that I want to see a different onco and one of her colleagues. I am afraid it will reflect badly on her (I worry about these things:). I went off on her the last time (referencing this forum board how I read how some of these ladies have so much more access to their oncos). She apologized to me so the fact that she apologized makes me think she knew I was right to a certain degree.
I wonder how they assign patients to the onco. I did not choose her. When I was diagnosed with stage iv at that breast cancer center, I was then sent to their cancer center. Probably bc she had the least amount of patients, or maybe, bc she is the one of the few that accept Medicare/Medicaid (I now have both and it was a stressful horror to go through), but now whatever Medicare does not pay, Medicaid does and I get my free private car rides to all doctor appts. back and forth and now I am not even paying anything for my regular xanax and ambien meds. I paid 0 dollars. It took about three months but I knew I had a limited amount of money and I could not afford any payments and certainly not an additional insurance coverage. I was shocked that Medicare hardly pays for anything.
Now Medicaid is even paying my Medicare premiums of $135.50 per month for Plan B (it is going up to $144 in 2020 and they pay my Plan D (rx) of $37.90 a month and they have already reimbursed me for the three months that they docked me (SS) for medicare. I knew going forward I would need this protection.
I am going thru this now. It is like a kick in the gut. I was pretty stable on Ibrance and letrozole then faslodex for 5 years — or was I? Slower growing Mets not seen on CT because of non discrete borders and one that was seen in lung, slow growing lymph node, and infiltration into my esophagus landed me on this very hard journey that included multiple endoscopies, a bronch, 6 weeks of radiation with weekly chemo. It’s been hard physically, especially not being able to swallow harder foods, but sent me reeling mentally. I revisited every fear, sank into depression and panic, and really struggled to get back to my “new normal”. I am trying to accept that living with this ( I don’t even want to name it) is like walking a tightrope. I told myself a story about being stable and looking forward to another 5 years and all hell broke loose. In fairness, I have a history of panic and depression. So I don’t bring a natural resilience to the table. I got help from my treatment team, including a psychiatrist, lots of good support from family and husband, and right now I’m much calmer and working to accept I only have so much control. Not to go on about me. I want to tell you I feel your shock and fear. It is a landmark going the the first line of treatment, but there’s still a line of treatment. You and your doctor will discuss what’s next and you will do what you have to do to beat this back. It will never be easy. I am trying hard to accept that this is my life. It is not my whole life, tho. And as beaten down as I feel, I’m still looking around for travel ideas to have something positive to think about. I strongly advise you not isolate yourself. Do something everyday that has nothing to do with cancer. You have cancer, but you are not cancer. Take care of yourself and treat yourself. Manicures, hair, shopping therapy. After so much fg radiation there’s no way I want a massage, but I did have a Reiki session Sunday. My logical mind tells me there’s no reason this should work, but I felt much more centered and calmer afterwards. I walked almost 2miles in the cold, admiring the local Victorian homes decked out for Christmas. If I’m going to live with this b:tch, I am still going to have a life until it gets me. Thank God for Law and Order. On days when I was mentally or physically wiped out or both, I binge watched. Maybe not the best coping mechanism, but it was a distraction. Let your team know how you feel emotionally. Get whatever help works for you. I don’t know what’s next. I’ll find out in a few weeks. Im determined to enjoy the holiday lights and my time off from work. Some vacation!! Gwennie, you will get thru this. It will be damn hard at times. Let others help and offload whatever other stressors you can. Find small things that give you joy. I’m rooting for you. For all of us. Who would ever imagine having to get up everyday and know that this disease is a fact of life. It is the hardest thing I’ve ever done. I’m not done living and either are you. One day at a time. It’s all we ever had anyway. Love and a huge hug from your sister in the fight💕
It must be a blow to hear that news especially if youre feeling well.
And, if you are feeling well it doesnt sound like youre anywhere near 'the end'. Just time to switch to another drug perhaps?
There are so many drugs we can switcb to i would see this as a 'blip' but not 'the end'.
All the very best for your visit with the oncologist.
Xx
Oh Gwennie, So sorry to hear your news. It does sound like your onc has a plan.
I know how dissappointed you are, but try somehow to relax until your onc explains your next step.
Each of us know we will get that report at some point. It's awful.
But, you are feeling well. That's so important!
Sending love and hugs and prayers !
Thank you. I’m on my way now I will know later today. I will post.
Hi Gwennie... I was on Ibrance/Letrozole for only 7 months. After having an oopherectomy in September a mass was removed from my ovaries and it tested positive for cancer. Thankfully the same cancer. I was devastated.
In October I had a scan and it showed new mets and that really did me in. I got so depressed and cried for weeks. I was taken off Ibrance/Letrozole but in a way I was glad because the drugs made me feel horrible.
I began a trial treatment late October of Kisqali and Faslodex. I’m having a scan next Monday. I’m praying for a Christmas miracle of just hearing it’s working.
Stay positive... there are many treatments for us.
How did your onc visit go?
Best regards, Maria.
Hi Gwennie, I was just told the same thing, going off ibrance and for genomics testing when they will tell me what my next treatment is. Please share with the group what your next treatment will be, it is always good to compare for those of us who are at about the same level.
I started Xeloda infusion. I will still get Xgeva shots. No more Ibrance or Faslodex.
90 minutes of infusion. 3 days ago. Feeling very sleepy and fatigued today.
I no longer feel depressed about the future. There are so many new drugs out there. Just wish there weren’t so many side effects.
Happy Holidays to all of you and best of luck next year.
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