Ibrance stop working : I got the... - SHARE Metastatic ...

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Ibrance stop working

PLASEM
PLASEM

I got the results of my CT and I have new sites on my pelvis bone where I have a lot pain they are tiny ones. My oncologist said to do another bone biopsy to see if the biology of my bone cancer change, I feel sad because I got used to take Ibrance and Falsodex, I think a new biopsy is necessary, my oncologist said after will discuss what treatment to take, maybe chemo infusion will work faster, maybe I will ask for second opinion to see my new treatment, all I have was Ibrance and Letrozole switched to Falsodex instead. asking for suggestions, thanks

43 Replies
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PLASEM
PLASEM
in reply to Hidden

Thank you, I know I just got that news yesterday and I am trying to adjust to the idea that Ibrance is not for me anymore and I wish that I was going to take it for 2 or 3 years, it is really good to have you and all others as my support Thanks

13plus
13plus
in reply to PLASEM

Hi PLaSEM, I'm sorry to hear the ibrance stopped or wasn't working for you. How long did you take it for? My scans in Dec showed mixed results after 5 months on it. For now I'm staying on it and doing more scans in another couple of months. I was also hoping for better results and that I could take this drug for a couple of years as it's so easy for me to tolerate!

PLASEM
PLASEM
in reply to 13plus

I was taking Ibrance and Letrozole then with Faslodex for 16 months, my cancer markers are going up little by little and my pain on my hips and lower back increased a lot so I kept calling my oncologist I had a MRI the results were mixed but I told my oncologist why so much pain and I got my CT before the schedule time

13plus
13plus
in reply to PLASEM

Wow that's so good you pushed for the CT, or answers to your pain. We really do have to advocate for ourselves! I don't like being in the mixed results stage. It's scary. Only good thing is my markers are still slowly going down and no real pain....but I am physically strong so sometimes even that is not reassuring!!

13plus
13plus
in reply to PLASEM

I also meant to ask how come they had switched you from letrozole to faslodex?

PLASEM
PLASEM
in reply to 13plus

Because we tough the pain was due to the Letrozole

13plus
13plus
in reply to PLASEM

Oh don't worry, I see you already shared the answer about letrozole with someone else!

Hi PLASEM,

I'm sorry to hear that the Ibrance and Faslodex has stopped working. But it is good news that your oncologist is already thinking ahead to different treatments for you. I hope that you can get the biopsy done and quickly get going with your new line of treatment.

Take care,

Sophie x

PLASEM
PLASEM
in reply to SophSP

Thank you, He will request it and wait for the insurance authorization, God bless you

SophSP
SophSP
in reply to PLASEM

You're welcome! May God bless you too. x

I’m sorry it stopped working. I hope your new treatment works better and faster. ❤️

PLASEM
PLASEM
in reply to Sarcie

Thank you

They have many other treatments, but I know it is super frustrating and scary. I have been through a few different treatments. I hope your next treatment kicks cancer to the curb. Ka-pow!

PLASEM
PLASEM
in reply to BakeryBetty

Yes hopefully thank you

Hi bakerybetty. I was diagnosed with Mbc to bones feb 2018 and have been on ibrance and letrozole for 10 months. So far so good but who knows. He lowered my dose to 100 2 cycles ago and I don’t think it’s working as well. I have my blood work appt Jan 21, let’s see. Can you please share what treatments you have been on and when we’re you diagnosed!

Hope all is well. Praying for continued success for you and all of us. Big hug

PLASEM
PLASEM
in reply to Juliandrea

I had thyroid cancer in 2001 then on 1/2014 breast cancer stage 2B I had bilateral mastectomy Chemotherapy and radiation and July 2017 came Metastasis to the bones first it was only 5 sites I started with Letrozole after two months added Ibrance 125 mg and Xgeva I started having pain on my hips and I thought it was related to Letrozole so I switched to Falsodex since September I am taking Ibrance 125 mg and Falsodex and now it is showing progression but everybody and every cancer is different, They are people who take it for years take care and God bless you

Hidden
Hidden

My aunt may have to switch to something other than Ibrance as well.. Holding on to positive results for you both!

PLASEM
PLASEM
in reply to Hidden

Thank you

I can’t tell you how much I believe in second opinions. Any doctor worth his salt will welcome a second opinion and if hedoesn’t toime to get a new doc. I have an oncologist in Wilington NC but go to Duke Cancer Center every three months to see an ocologist there. You might not want to get your second opinion from a doctor in your doctors practice. That can get sticky but if you have a cancer center within 300 miles. Definitely go for it. It will either confirm what your doctor says and make you feel better or offer another way of looking at it and get communication going between them both. I hope doing that you will feel better. Keep everyone informed. I am routing for you and I am sure others are too.

PLASEM
PLASEM
in reply to BuoyantCat

Thank you

I am so sorry to hear that your treatment stopped working. Please talk to your doctor and please go get a second opinion. I hope your pain is not too bad. Please keep us posted about how you are doing.

Terri

PLASEM
PLASEM
in reply to Sister3nkc

Thank you, my pain is worse at nights.

I was frustrated when Ibrance and letrozole also stopped working for me and I know exactly how you are feeling. Now I’m on Halaven which is a chemo drug and I’ve lost my hair. The regimen is difficult but mine turned extremely aggressive when Ibrance stopped working. So if your progression is mild maybe they can put you on oral Xeloda or something kinder than chemo infusions. Best of luck to you

I will have a biopsy, have a second opinion then make a decision, thank you

I agree with the second opinion. There are 2 types of bone mets. I saw a radiologist last year before surgery and he let me know that my blastic mets will respond to radiation and not the biophophinate that I’m on. But my lytic mets will...they may respond to the Perjeta I’m on but 5-7 radiation treatments would do it. So now I’m trying to extract from these people how many of each I have so I can make an informed decision...Blessings and good luck with the biopsy! 🙏🏻💕

PLASEM
PLASEM
in reply to Rhwright12

Thanks that is a good information to know, God bless you

Faslodex and Ibrance stopped working for me first round, started with bone Mets and a nodule on lung. I was coughing and than a breathing problem. I thought it was a side effect of the Ibrance. Dr. Said no sent me for a cscan. Lung was 60% full. Had port put back in lung drained and started Halaven. I could tell first round it was working, other than hair loss no side effects until the start of the third month. The neuropathy got so bad I had to stop. The chemo is only 10 minutes, the prep takes longer. Started xeloda kept dropping the dosage been on 3 months. Having cscan before this months visit. I was diagnosed May 2018. I will keep you in my prayers.

PLASEM
PLASEM
in reply to Audrey06

So sorry that you couldn’t tolerated your chemo I hope Xeloda is working for you God bless you

NCDS
NCDS
in reply to Audrey06

How is the Xeloda? Starting this week ibrance and faslodex worked 3 months, now stopped. Prayers.

I'm sorry it stopped working. I went through the same thing with Ibrance and Letrozole. Tried another hormonal therapy and it didn't work either so am now on an oral chemo - Xeloda. My recent scans were good so I was happy about that. Hope it continues to do its job. My oncologist is always telling me about other options if this stops working so am choosing to stay optimistic. Hang in there and sending hugs and prayers your way.

PLASEM
PLASEM
in reply to Kimr2081

Good that your treatment is working God God bless you

So sorry to hear this bad news. How long have you been on the ibrance and letozole? I take both of those too and am getting nervous that they are going to stop working for me too.

PLASEM
PLASEM
in reply to Sharonlife

I took them for 16 months do not worry every body is different God bless you

Plasem I am so sorry to hear this, but they will find the drug that works don’t worry. It is frustrating and very concerning I know. Where is the pain in the pelvis? Is it constant or only when you move or bend?

PLASEM
PLASEM
in reply to Juliandrea

Thanks my pain is lower back then front and the sides, the pain is worse at nights I have to keep moving from one side to the other side and when the pain is too much pain I take my pain medication that make too sleepy, God bless you

Sharonlife
Sharonlife
in reply to PLASEM

I have a lot of hip pain at night too. I have mets in my pelvis, and osteopenia. I got a 4" thick novafoam pad from costco online, and it made a huge difference.

PLASEM
PLASEM
in reply to Sharonlife

Thanks I will get Novafoam God bless you

Hello Plasem. I hope you are feeling better physically and mentally now. I just saw your post from 2 days ago. I can relate. Recently I was told my letrozole had to be replaced as it isn't working. Don't ask me how my onc knows it is the letrozole and not the ibrance that needs replacing. Or, ask me after Monday when I see her! I too was bummed when I heard Mets are back, but I am staying hopeful that new treatment which is faslodex will show even better results for me. Hopefully your new treatment will be even better for you! I guess it is human nature to think the worse first when changing meds, but it may not be as bad as we think and could turn out better for us. Remember everyday people are trying to discover a cure. One of these days they will get it right.

Thanks, first I was taking Ibrance and Letrozole then on September 2018 I switched to Falsodex because I was having pain on my pelvis, pain got worse, my tumor markers are increasing so I had CT but there are people who takes this combination for years, my oncologist thinks the anti blocker medication is not working God bless you

Will the biopsy give you genomic testing on your tumor to see what it's DNA is made up of? And are you bone mets only or is the cancer in other places? After Ibrance, I went on Arimidex and Exemestane (a targeted therapy), both oral drugs which was nice after the pain in the butt Faslodex shots. Didn't have many side effects and it was effective for close to 2 years. Genomic testing may give you additional treatment options including clinical trials, although if you're bone mets only you may have trouble getting in. The FDA has liberalized its compassonate use policy so you may be able to go that route if you can't get into a clinical trial.

Yes I am only has the metastasis on my bones and they are tiny thanks, I requested it

I'm sorry that you are going through such a time of uncertainty. Alot popped into my head as I read your notes here and some of the responses. I absolutely agree that a second opinion is a great idea! After the bone biopsy but can be scheduled soon. Your onc should be good with that and even help get it set up for you. IF you are in hte US, the top tier of Cancer Centers are those designated "Comprehensive Cancer Center." Those are usually affiliated with a medical school, and they have bc specialist oncs who both see patients an do research. There is a list of them on this sites home page, on the right hand side of the screen under "resources." I have been living with bone mets for a long long time--over 15 years, and had them from first diagnosis of bc. When I was first started out, I learned that alot of oncs would switch us from Femara (letrozole) to Arimidex, and vice a versa, if the side effects where rought. Both of those meds are non-steroidal aromatase inhibitors, and it seems that some oncs favor one an other oncs favor the other. It generally can take at least 3 months and sometimes longer, to determine if those meds will work. They are often the first hormonal drug used for those of us with a hormone receptor positive bc if we are post-menopause. If one of those meds do work for us, Faslodex is often used next and quite few of us get more time with it than with the first med. I got nearly five years from Letrozole and over 9 years with Faslodex. The bone meds we take, like Zometa or Xgeva strengthen our bones and also are believed to help bone mets heal. Ibrance damaged my lungs, apprently permanently, after just a few cycles in 2016, something considered "rare" and recently Pfizer has been required to add a warning about that. (I'm now on exemestane, a steroidal aromatase inhibitor, for nearly 2 years.) I hope you know that usually we don't die from bone mets. They aren't fun to deal with, but alot of us with bone mets only do live for long periods of time. It's been the bone meds that really turned things around for those of us with bone mets, by preventing or lessening fractures and improving our mobility. Another thing that I heard about from others with E + mbc, early in my dance with mbc, was that some oncs would prescribe low dose estrogen after we'd had success with several hormonal treatments that eventually stopped working, to push the cancer cells to mutate and possibly respond again to the treatments already used. The second opinion onc that I saw recently said he doesn't like to do that because of the side effects of the estrogen and I had such a list of questions for him that I didn't ask more about that. He did say he thought I still had a long time........ nice to hear! My original onc just retired at the end of last year. She'd treated alot of women with mbc and did not get rattled. She always looked at the films or whatever from the various scans etc that I had and didn't switch my meds until she could see growth in the bone mets. Those were described as "extensive" when I was first diagnosed, and were in several vertebrae, a rib, scapula (shoulder blade) and on the arch of the pelvis. I am really lucky to never have had pain from them. I hope you and your onc (plus a second opinion bc onc) will come up with a plan that works well, gives you years, and most of all, peace of mind. Do keep us posted.

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