Hi ladies...my SABR treatment planned for the new year has been called off
My oncologist just rang me this morning and after a discussion with the radiologist they’ve decided that because there’s a bony met in sternum as well as the liver met that she’s going to change my meds...this isn’t what I wanted or expected and I’m so upset...I’m going to see her this afternoon to discuss...she’s also talking about a trial?
I don’t know what to think now....just wanted to stay on Ibrance for longer but this isn’t going to happen ...I’m also cross that I had 2 unnecessary scans on Monday
Any views on this?
Barb xx
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So very sorry to hear this, especially just before Christmas. Thankfully you are getting to see your oncologist this afternoon. I hope you get something sorted that you are happy with. I only managed three months of Ibrance before liver progression and I was absolutely gutted. We don't seem to be offered trials here in N Ireland, so am curious to see what the trial is. On the plus side you have been in a lot of pain and maybe a new treatment may alleviate that for you. I know when I changed treatment and my tumours shrank a lot, the pain disappeared which was an absolute joy. Will be thinking of you and wish you much luck. x
Oh thank you for replying so quickly...what treatment are you on now?... I was dreading going through the awful side effects of the radiotherapy again so at least I’m spared that...trying to look at the positives here...I just felt ‘safe on the drugs that are familiar and I’ve thought Ibrance was the wonder drug over the other ones
Anyway I’ll know more later
I’m wary of entering a ‘trial’ seems as if I’m going to be a guinea pig and it might not work and I’m scared of side effects...I did quite well on Ibrance letrazole combo despite the pain
Hi Barb, after 19 weeks on weekly Taxol and Denosumab every four weeks, I am now on Fulvestrant injections plus denosumab. Will have another full body MRI and CT scan at end of Jan. The idea is to give my body a rest from chemo. I expect some progression with just Fulvestrant and Denosumab but you never know 😊. Next treatment will be Xeloda I think. With mets on spine, in liver and lungs reduced so much on Taxol I feel relieved just now. After Ibrance failing I was worried nothing would work. Such a dramatic improvement to lungs and spine and good improvement to liver. Looking forward to hearing what your oncologist suggests. Sending hugs x
I am so sorry to hear this Barb. I was very upset when Ibrance and Faslodex quit working. I was very scared but being on Afinitor and Aromasin hasn't been as bad as I thought. Side effects are different but manageable. I will be thinking of you today. Stay strong my friend. Sending you a big hug💚
Oh I do hope your scan results are good...I’m hating my life today yet yesterday I had a nice day...went up to see my horse...visited my accountant and did a bit of shopping then went to a talk about Judy Garland followed by a showing of ‘ meet me in St Louis’...now everything is topsey turvey
I so understand. I am happy you had a nice day. Have you had the gene testing done? I did so they know more about my tumors and for treatment options. As of now when this treatment stops working infusion chemo is last resort. I don't think current treatment has the longevity as the Ibrance. My tumors are classified as PIC3CB and mTOR. I think that means they are a bit more tricky to treat.
Just hang in there until you talk to your doctor today. May not be as bad as you think. If you're like me I always think the worse. Please let me know how it goes.
This is the company that did my testing. Maybe this info can help you to ask your doctor. Also they had financial help and I didn't have to pay anything.
Hi Barb: Sorry to hear the unexpected & disturbing news. Hopefully the new treatment/clinical trial will have good results & improves your quality of life. Please keep us informed on the options they offer you. Love & prayers ❤️🙏❤️
Fear of the unknown is what’s upsetting me today...but I suppose that’s what we have to live with
Fed up
Barb xx
Hi Barb,
I'm so sorry to hear the news from your oncologist. So has the SABR been cancelled altogether or just postponed until you start your new treatment? I don't think I got it.
Let us know how things go when you see your oncologist this afternoon. Hopefully she will be able to reassure you. The new treatment might be better for you with less side effects, and a trial sounds really promising. I would jump at the chance to take part!
I have received an appointment through for gene testing at a different hospital to the one I am under. So I will have an ultrasound and a new breast biopsy done in January and we will take it from there. I am nervous, but excited about what this could mean, so I would look at the trial your oncologist mentioned as a good opportunity, Barb. You might be given a drug that will be the next best thing to come on the market for this disease.
Can you explain more about the gene testing? Are they testing a “new” area to see what the genetic components are so they can tailor a specific treatment?
I'm not sure of the ins and outs of the gene testing yet. I have received an email from the hospital with a few attachments, including questionnaires about my health and family history, so I shall print those off and have a look at the information some more. I will know more when I have read the information and also when I attend my appointment.
I can understand your wariness, Barb. It is scary when you have the unknown ahead when you have been comfortable with your current treatment plan. I wish you all the best for today.
Sophie x
As you know I have had some progression and I was so upset when he said he may have to take me off Ibrance. After thinking on it a few days I’m ok with him changing it, even if it means chemo. The Ibrance did nothing to improve my cancer so maybe chemo with kick it’s ass. The shock is always so awfully I hope you can get all your questions answered.
Sorry to hear that they are holding off on your treatment , however, I do believe everything happens for a reason! So I agree wholeheartedly with the other women who believe the next treatment may be better for you. As you know, I am in a similar boat with the possibility of starting new meds and as scared as I am, I am also thinking of the positive results that may mean. Everything has a season and a reason. Perhaps this is going according to the larger plan! Not our own. sending you a big hug and prayers for inner peace and strength!!
I'm so sorry to hear this, Barb. I have heard that trials are different for us in that we ALWAYS get the medicine since we are stage 4 there is no "placebo". Can someone more well-read on the subject please comment about this? Remember the woman in Florida who was totally healed after immunotherapy? It seems God may have something better for you; we have to have hope; I am most miserable when my hope wanes! Ask that doctor how sufficient is that information that people going off ibrance for 42 days can go back on it again and it works? Just a question on my mind and I'm thinking it's on yours too. I get really scared too as for the last 3 weeks I've had a headache at the top left of my head; so yesterday I looked up my bone scan to see where the thing lit up on my skull and it was the top left paritel cavernium or somthing real close to that, and I cried and cried and thought what is the point if the bugger is at my brain, then I backed off and started thinking rationally again. I was in the middle of trying to schedule a mammogram and just wanted to throw up my hands, coz if the brain goes what's the point? The letrozole was crippling me, so now I'm down to 1 mg. ev. M,W,F and nothing else but fenben and vit. E and all the other stuff I took before, supplements that is. I told hubby I now take more pills than him. in the morning anyway. Sending hope and prayers, I have to always remind myself that Jesus has my back, ALWAYS! In the meantime, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. Philipians 4:8 Read the Psalms, I just started on them yesterday! <3 God bless you and heal us all in Jesus name, amen! xo
I'm sorry that your planned therapy didn't go as planned. It's a difficult time when you have to deal with the disappointment of a therapy running its course combined with the unknown of a new treatment.
I just wanted to reassure you that there are many options after Ibrance/Letrozole. Here are the treatments that I have been on since my 2013 diagnosis: Letrozole, Ibrance with Faslodex, Afinitor with Exemestane (I agree with another post that Afinitor has a bad reputation with regard to side effects, but if the dosing is done right, the side effects are manageable), and now Xeloda (an oral chemo), which stopped the progression in my liver and is very easy to tolerate.
I agree about the trials. I was unwilling to take a chance when there were treatments that were proven and available.
Saw my oncologist and she’s starting me on Afinitor and exemastane which I’m not looking forward to but no choice
The trial she mentioned doesn’t appeal to me as 50% get two drugs and the remainder get one drug...I’m not in a gambling mood!!!... I’ll have a go with the new protocol and hope I can tolerate this
Thanks for the update. I have been thinking about you all day. I hope your new treatment will suit you. At least you have the option of the trial in future if you decide to change your mind.
I was going to put a post on but the ladies will see this
I don’t like the sound of the side effects but I’ll have to just see how I get on...apparently the dose can be lowered if I struggle
She also told me there are more treatments after this one
I just don’t fancy doing a trial...as she explained this trial if successful the drug wouldn’t be available for about six years...shows how long it takes to get a drug approved
I had a look at the side effects too. I saw some similarities between letrozole (aches and pains, possible hut flushes etc) and exemastane. But I would say that you are unlikely to get all of them. I expected to get hot flushes and other side effects from letrozole, but I don't get that. We are just made aware of what could happen.
Your oncologist sounds really positive. I'm glad there are many other treatments in the pipeline after this one. That just goes to show we have years ahead of us! When one treatment fails, another one is waiting in the wings to take over.
I'm glad you are feeling a bit better about your change in treatment than you did.
I would try not to dread what's coming up (easier said than done, I know!) Afinitor might not be as bad as you think and exemastane might also be tolerable. You might find that this new line of treatment suits you better.
I certainly did after waiting in limbo all day for my 4.30 appointment then she was an hour late so I’m afraid I had to go to the loo in the waiting room for a cry...I was calm in the appointment itself but so wound up within
I think that wine was well deserved
Looking back to when I started Ibrance I was scared of it and actually almost threw away the first pill!!
Oh Barb! That had to be hard waiting so long to be seen. An hour late is unacceptable. My oncologist isn't normally too bad, but it is annoying when we are kept waiting. It's bad enough being there in the first place so any extra time spent in the waiting room can feel like torture.
It does sound like you deserved that glass of wine. I hope it helped calm your nerves a bit.
Oh Barb I am sorry. But agree with everyone that it is just a change, and there is a lot out there.
One thing—it’s genomic not genetic testing we want. Genomic looks at the tumor’s genome to see what mutations it does and does not have. This can help determine what might be most effective now, and make you available for trials should you change your mind. This testing is another area that’s advancing all the time.
Am so glad you had a nice day yesterday! All this mindful, in the moment stuff is hard to stick to but it’s all any of us have. I hate when people say cancer is a “gift” as it makes us appreciate life more. It’s not a gift it’s a f——— burden. The gifts are the little things like Meet me In St Lous, our horses our family etc. I like to think of it as it’s the gifts that help make the burden somewhat bearable.
I so hope your appointment went well and they have good ideas to help you move forward!
I agree that cancer is anything but a "gift". Who would want to be "gifted" cancer?! It reminds me of Sophie Sabbage, the author of The Cancer Whisperer. She "made friends" with her cancer, which I couldn't get my head around at all. It will never be my friend. It is my mortal enemy. How can you be friends with an enemy whose sole aim is to kill you?
I have been reading through the paperwork I printed up today and it looks like I am getting genome, rather than gene, testing. I wasn't really aware of the difference, but I am glad I am getting genome testing! I want to learn everything I can about the tumour and what may be available for me in future.
Am so sorry you are having such a rough rocky time.
You are not alone. This mbc sucks big time. I have cried a river lately.
I had radiation 2 years ago to t7,t8. Because it’s the spine radiation gets very complicated. I saw two more radiation oncologists- neither wanted to do more spinal radiation. There are certain Mets they don’t want to touch. My oncologist told me they all prefer systemic treatments to kill cancer, not radiation. Ok.
I lasted nine months on ibrance and had some progression but allergic reactions were getting worse. I was so upset when I had to stop it.
I had genomic tests in September. Unexpected was her/neu changed to positive and pic3 positive. That damn conversion changed everything, dictating different targeted therapy of Herceptin and perjeta. Got port in October, have had 3 treatments and lo and behold symptoms of heart failure started.
Sure enough, echo showed it. On cardiac meds now also. Having side effects from that. See cardiologist two times week.
I want to be done with all this. I don’t know where the fight in me comes from anymore. I am not able to function as I used to and that loss now is devastating. I get how you feel as others do also.
I need to have another pet scan-don’t even want to but pain is bad in
My ribs so doc wants to see why and if I can get palliative radiation.
I truly admire your tenacity- you keep moving in spite of it all. I hope you have good options.
Saw my oncologist this evening and as Ibrance letrazole has failed I’m starting Afinitor and aromasin which I’m so scared of...just dreading the side effects though I managed fairly well on 100 mg Ibrance
As for being tenacious....I’m not!!!... just have no choice
Barb, We probably wouldn't have taken Ibrance if we had read the side effects first. I think all of the drugs that have the potential to delay progression have awful side effects. Fortunately, most don't get them all.
I am with you about trials. I would be hesitant to be in one. I am sending lots of prayers and hugs your way. Blessings, Hannah
So sorry to hear that and totally feel your pain ... It's hard knowing our illness can’t be cured and our life is ruled by those 3 monthly tests but some comfort can be taken from the weird familiarity we eventually gain with our treatment... A bit like a relationship, you doubt first " is it the one?"and once the first hurdle is passed and it has proven its worth ( ie: giving you the progression free Holly Graal) and you got used to side effects , you move into the comfortable phase, the trust settle, you drop your guard and allow yourself to concentrate on living and settle in your routine. I appreciate that for you the routine has been all but settling but it seems that despite the pain, discomfort and upset you have marched through, holding on to the Ibrance Trophy as a torch on a dark path... And that is my other finding: Good old Ibrance ... I have found it to be both a blessing and a curse. Whilst you are on it, it acts as a driver, a motivation, it feeds hope (after all "people have been on it for years")... The issue comes when either it doesn’t work, has stopped working or has to be stopped because of side effects... The news is invariably followed by a mix of guilt and despair: "why did it not work for me" and "what next"...
I am not going to lie I have really struggled in the immediate aftermath of my post Ibrance world. I am going to spare you the details (I have likened it on previous post as being dumped by a boyfriend you still loved very much) and the steps that followed, but what I am going to say is this...
There is a life post Ibrance, there is a battery of other options/treatments and actually, weirdly, as well as becoming slightly accustomed with this "treatment roulette", I have reached a place of peace... I feel slightly liberated to no longer fear at each test result to be told that I need to drop the Wonder drug. I have learned to manage my expectations and attend each “Result appointment” every 3 months as a “nothing to lose everything to gain” opportunity. I am on my 3rd line of treatment and expect progression at my next scan (2nd Jan) and I am fine with this.
You had so much side effect from SABR, moving on to a less intrusive treatment is not necessarily a bad thing...
Barb, you have so much resilience, you will take the next steps with courage and good humour just as you have done everything so far…
Thank you so much...you hit the nail on the head!!... I so wanted to be one of those patients that Ibrance worked for...for a long time...disappointing to say the least
I wish you all the best with your treatment and admire your acceptance and feelings of peace
At the moment I’m full of hell and really not interested in anything...the thought of Christmas festivities makes me cringe...I’m supposed to attend my staffs party tomorrow and I really don’t want to go as I’m on an emotional knife edge...worrying about people asking me how I’m doing etc....I know it’s meant well but I can’t face them
It sucks , there is no two ways about it and you are heartbroken... This will take time to heal... But if I can do it you most definitely can. You are such a driving force on this forum and your personality shines through! Give yourself the time to grieve... You will need it ... For me it felt that I was grieving a future, a chance and also to some extent this forum.... Because let's face it so many people are on Ibrance that you end up feeling a bit alienated when you have moved on...I just wanted you to know that what you are feeling is justified and the intensity of the feeling shared.... But also that there is a life post Ibrance...
I am always very opened when people ask how I am doing and actually telling them you are changing treatment because it stopped working is quite therapeutic... Like everything, letting it out instead of bottling it helps I find... It becomes something factual, not emotional... It is also a good way to get rid of the fake well-wishers! They will run a mile after you drop the bombshell!
It is such a shame we are all spread around the country it would be so lovely to catch up and have a cry over a coffee sometime!
I second your wish that we ladies should get together for a tea/coffee. I would love that! I don't know anyone near me with metastatic breast cancer, apart from one of my oncology nurses at the hospital who administers my infusions.
I also wanted to mention that there is hope without ibrance and beyond ibrance. I was never offered it as a treatment option, and I have been stable since my first post-diagnosis CT scan in August 2018. To begin with I felt like I had missed out, but I am happy with my treatment plan for now.
I love hearing from all of you. It would be great to meet up, but since I'm in California, it would be difficult. This forum really does bring us together, knowing we're not in this alone. I'm taking Ibrance. Currently I'm NED and I want to stop taking it. Don't like the side affects, but I'm too frightened to stop.
I know you are in the UK. I've been following you for some time. Wish you well on this roller coaster. None of us know what is around the corner. Hang in there. We love to hear from you and hope we can offer encouragement along the way, but sorry any of us have to go through this. God bless.
Southern California is lovely. I remember driving down there for the first time in December (a month after moving to California) and thinking how nice it was to have such sunny weather that time of year and to see strawberries in season! We don't normally see strawberries until June. I still miss the amazing variety of oranges, lemons, peaches and other mouthwatering goodies that grow there. I'm glad you have had a chance to visit the UK and that you had a good time.
Sorry to hear you have to stop the Ibrance treatment. I really hope the new meds will provide some relief for your pain and symptoms. And most importantly that the side effects are minimal.
Wishing you all the best, take care and feel better soon.
Hi Barb, I send you big hugs. So many posts here have been amazing and you can see we are all in your corner and wishing you success with the new treatment. I also dread those 3 month scan results but you can see from other's experience that there is plenty out there to help. Give Bugsy a big kiss and try to enjoy Christmas! Food, daughters and booze anyway! Fay
Sorry to hear your news Barb and you are at the bottom of the roller coaster ride but you will go up! Gotta go. I have a Pre-Op appointment and Faslodex treatment today. Don't be afraid to ask to stay with treatment if you feel that is what you want or get a second opinion. Wishing you well,
Barb, I'm so very sorry to read your news and understand your disappointment. I have terrible dreams about leaving Ibrance, but the ladies here have made excellent arguments for hope after ibrance. I also wonder about the literature stating the ability to return to it after a break. That is the scenario I use to comfort myself. I don't know how realistic that is, but it is a security blanket I like.
I have no experience with Affinitor but I do take exemestane. It isn't so bad. I think it may make me a bit dizzy, and I never know if I'm hot or cold...but not so bad.
I wish you the very best and hope you have a joyful Christmas in spite of this kick in the head.
I’m starting Afinitor and aromasin in the new year....not happy obviously but at least there’s a plan...I should be pleased that there are drugs to try
Barb, just catching up on here ( been away for a few days to bring my daughter home from university ) and I want to wish you well on the new protocol in January . It does make sense though to come off ibrance if you’re having progression , so I hope this is exactly what you need! I am still on Ibrance but my ct scans are less frequent now , so I am just hoping that by the time I have my next scan (in May) , that things haven’t changed in that time . We all dread change , but if it’s needed , I will go with the flow and hope for more progression -free time while new drugs are developed . And try not to think about the side effects too much , as you will cope ...you have got this far in tough times and will do it again ! As for the staff party, I wouldn’t say anything ... just that you’re doing ok and change subjects ! !
I wish you and your very dear daughters a special time together over the Xmas break ... they are the ones you can be yourself with , so enjoy every moment with them . Much love to you all x
You’re so right about the staff party I’ll just say I’m ok...knowing my staff they’ll be busy getting drunk and more interested in having a good time
I wrapped my Christmas presents this afternoon and after a few tears and telling myself this is the last time I’ll do this....I got into the swing of it and quite enjoyed myself
Enjoy ... and plan to do something nice with the girls ! ... We’re off with our daughter to Castle Howard in York , to one of their twilight evenings , to see their wonderful Xmas decorations and then to Edinburgh for Hogmanay . Merry Christmas ! x
I was on Ibrance for 4 months when it stopped working. I, too, was gutted. I was in a support group where several women had been on Ibrance for YEARS and I thought I would be too. I went on to Affinitor. Didn't work....sent my blood sugar into the 400's, though! Then I went on something called "the red devil." It not only didn't work, but I was so sick on it. During all this time, my tumor markers went from the 60's to the high 1400's. I started Halaven a few months ago. I am on my 4th cycle. The markers are down to 252. Side effects are constipation, a little nausea, hair loss and deep fatigue. I am curious about the trial you are on. I am never eligible for trials because I have RA, too. Let us know. I have heard that a few of these new trials are incredibly promising.
You’ve misunderstood my post..I’m not on a trial but I was invited to do so
However I prefer not to be in a trial....I’m too worried about the meds I’m being put on next ...I’m just not interested in taking part in case I don’t benefit and to me that would be time wasted when I could be taking a tried and tested drug
I hope everything works out for you Barb. Stay positive. Are you doing any complementary things to accompany your treatments? I think there are ways to naturally do a liver cleanse.
I am assuming it is tumors in your liver that are the main trouble. Adding some complementary treatments may help you stay hopeful.
I am six months on Ibrance and Letrozole and so far it is working. If it stops working I will just do complementary things and hope that I can heal naturally. Although, I am not opposed to radiation as it has helped many people. I am sort of new to all this so not sure what are the best ways to treat cancer. But there seems to be many complementary treatments out there. I use a Wave Mat and try to spend time on it every day. Have you explored some of these alternatives? I think knowing there are other things besides the drugs keeps me hopeful and happy.
I really appreciate all you wonderful ladies sharing your journey. All the best for a happy holiday and a positive result for your health in the New Year.
I’m taking fembendazole vitamin E C D ...co enzyme 10...cod liver oil ...iron supplements ginger...glucosamine...CBD oil and magnesium
I have regular reflexology and have booked reiki massage for the new year (1st time for that)
I do yoga twice a week and swim a few times a week...I ride my horse on good days when I have the energy
I’m really trying to stay fit and healthy but it’s hard when I’m fatigued and in pain...I take a lot of pain medication but needs must or I’d not do anything
This is one of the reasons I’m worried about these new meds as I want to continue with what I’m doing now
I eat well but not a vegetarian as I’m anaemic and do need some haem iron in my diet but I have lots of fruit and veggies and juice when I’m in the mood
I don’t think it’s advisable to come off conventional treatment though at this stage...I think a combination of prescribed drugs and extra vitamins is the best plan...for me anyway
Well I can but try things even if they don’t make a difference
I even bought a little infrared sauna but now the novelty has worn off a bit and I hardly ever use it...prefer to sit in the normal sauna at the health club when I’ve had a swim
I like the sound of your wave mat...I’ve got one of those spikey acupuncture mats which again I hardly use...like a bed of nails!!
Hi Barb, just seen your post. So sorry to hear that your radiotherapy has been cancelled. As you know my oncologist wouldn't even consider radiotherapy.
I've been on the afinitor combination since September and it's been quite hard but this week I realised that I just wasn't drinking enough. I thought I was drinking a lot but last few days I've significantly increased my intake andvirtually all the side effects have gone!
One more advantage is that my hair has thickened considerably over the last 3 months.
I see the oncologist tomorrow to see if the afinitor is working for me.
It’s the uncertainty always with this disease...if only someone could say...take these pills and you’ll be fine....but I know the pills might not work at alll or if they do work it won’t last
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xoxo
Great appointment and Happy American Thanksgiving from Canada!
Help?!
Scan due fears
disappointed
