Ibrance vs. Letrezol

[Lark78]

Happy Thanksgiving I hope everyone had a great time with family and friends. Does anyone take ibrance only without letrezol? I ask because the letrezol has caused me to gain a lot of weight. I had a partial hysterectomy 2 years ago I thought since I had that I would not need the letrezol anymore. Please let ne know your thoughts.

[Buffwright]

I took them together for 3.5 years. my understanding is that Ibrance was designed to extend Letrozole — they may not have done tests on Ibrance alone. I didn’t gain weight. Wish they could figure out why some do and others don’t! I have not had a hysterectomy.

[Contrarielle]

Hi Lark. That's frustrating for you! My understanding is the same as Buffwright- the ibrance prolongs the effectiveness of the drugs it is given with, it's not helpful on its own. Re the hysterectomy- after i had my ovaries removed i no longer needed goserelin but I still needed my letrezole type drug because it blocks the tumour cells from using the oestrogen that is made by other cells of our bodies.I hope you find a solution for the weight. I have put on loads but it is because I have been having a very happy life eating much too much! Best wishes♡

[Nocillo]

I take Ibrance, but with Tamoxifen.

[Discocat]

Hi hope your having a great thanksgiving!

I have put on a lot of weight in the last 8-10 years going through the peri menopause before my cancer was discovered. I gained around 30kilos. I was also having issues with my thyroid having some nodules and being found to have hashsimoto thyroiditis which also seemed to slow any weight loss attempt down. I went to a few doctors who both connected the thyroid issues to hormone imbalances and said since I was boarder line from the blood tests I didn’t need to have any thyroid medication. Anyhow to cut it short…I am on Femara (Letrezol) now for around 6mnths with Ibrance currently, but with Kisqali previously, and I have managed to lose weight. It took a lot more effort than previous attempts but it paid off.

May be the weight gain is connected to the menopause in general and not necessarily the medication? I would suggest May be asking to have your thyroid hormones checked when you next have blood tests done?

Also the biggest change I’ve made has been to start drinking water like I’ve never done before in my life. I think this really made a difference with my diet attempt this time.

Good luck and best wishes

Zoe

[AvidBooklover]

Others have answered why you need both. And I agree about both checking your thyroid, and the effects of menopause. My oncologist said that breast cancer is the one cancer where women gain weight rather than lose it.

And with the notes about the thyroid being an issue, it is worth getting it checked.

I had a partial thyroidectomy for some cancerous nodules and the doctor noted I may gain weight unless I really work out a lot. I have had an issue with dropped foot, which may be why I am not working out more, and the scale is climbing. With the comments here, I just connected the two, so thank you for YOUR question!

[wendle3007]

Have you tried different brands of letrozole - I believe that different women have different side effects and have to try a few brands.

[Andersl]

Women gain weight around their middle after menopause whether its brought on by hysterectomy or naturally . Though like others have suggested, a blood test for hypothyroid is advisable.

My experience of being on Letrazole was awful. I had a lot of side effects. I researched the benefits for POST menopausal women and subsequently made a decision to come off it. I was on immunotherapy also at the time but the combination wasnt holding back the cancer.

I'm currently on Kadcyla only, every 3 weeks. No cancer has been detected in my body for over a year. Though I have had new mets in the brain. Treated with Gamma Knife surgery.

I'm in the uk. I'm HER2, ER positive.

By no means am I advising you to come off Letrazole. That's down to your personal choice.

I hope this helps.

Best wishes x

[Melpub]

I was on both until I insisted on genomic testing--a tumor had appeared in my thigh, despite both--and it turned out I'm genetically or genomically immune to Letrozol. All it did to me was make my hands really stiff. I probably did gain weight. Now I'm on Ibrance and Faslodex.

[Beryl71]

I'm on both. I understood they need to reduce hormone levels. I'm post menopausal and had tamoxifen when I was younger for 10 years. I understand they're a combo. I needed to gain weight so thought it was because they were depressing the cancer.

[JustmeMary]

I have gained weight since starting Letrozole about a year ago and it drives me crazy I can’t seem to control it. I have other annoying side effects as well but the weight gain makes me sad. I complain to my oncologist all the time but they’re not concerned and I think they see it as better than losing weight at this point. I too had a partial hysterectomy 20 years ago. I’m 57 now and post menopause - can’t imagine there’s much estrogen left to block but what do I know.

[Debbigbang]

Hi

My understanding is that they work together. I take letrozole and Ibrance. But I believe there are others you can take. It depends on where you are on the post/pre menaupuse.

I have actually lost weight with this whole situation. Weight before my masectomy was 185 lbs, now 160 lbs. I gave up sugar, eggs milk. My diet is more plant based, I do eat chicken, turkey and fish. I feel awesome..then again my diet was AWEFUL before all this, diet, weight and stress was taking its toll on me. Definitely NOT the same person at all.

Deb

[love2golfwell]

I have been taking both Ibrance and Letrozole for over a year now. I also believe they are meant to work together as the Ibrance blocks certain proteins that cause cancer and the Letrozole blocks the estrogen. Ibrance is also used with Fulvestrant. I have actually lost a few pounds since being on these meds but I have changed my diet a lot, cutting way back on sugar and eating more fruits and vegetables and adding more plant proteins. I also think getting your thyroid checked is a good idea. I had gained a lot of weight some years ago and was having some other issues and found that my thyroid hormones were off so I went on meds. I recently went off of the medicine with my doctor's approval as my levels had dropped to a great number since changing my diet and will get retested in 6 months. Hoping you can find a solution to the weight gain and that you do well on the medications.

[lambee9]

Hi Lark! That does sound very frustrating. I have certainly struggled with weight gain through breast cancer treatment, but I've also been successful at losing weight with a diet (ketogenic) and exercise plan. During my adjuvant therapy i tried two drugs similar to letrozole, anastrozole and exemestane, and they both caused fairly severe joint pain in the knees, so i discontinued. When i was diagnosed with bone mets 3 years ago, my onc started me on ribociclib plus Faslodex (fulvestrant) and it is working great. I am no longer detectible. The most important thing of course is that your drug regimen is stabilizing your cancer. However, you could ask your onc if it's OK to try another aromatase inhibitor besides letrozole--there are 2 others in the class, anastrozole and exemestane. Or you could even ask about switching to fulvestrant instead. It is another type of anti-estrogen, but given as 2 monthly injections. But as has been stated here, Ibrance is not yet taken by itself. Big picture-- if you have drugs that are working, imo i wouldn't rock the boat. First try a robust nutrition and exercise plan and see if your body responds. You may be surprised! 😊

[mariootsi]

I take Ibrance with Faslodex shots. I believe they have to work together.

[jersey-jazz]

Dear Lark78I took Letrozole without taking Ibrance.

The oncologist wanted me to take both at the same time but I refused for two reasons. The first was the price that the company was charging the insurance company:$17,000.00 per monthly prescription! Although I have good insurance, I was and am opposed to joining in on ethical reasons. How do they get away with it?

The second reason I did not take Ibrance was that I wanted to see how Letrozole worked for me and you cannot measure two variables at the same time.

The result was that I had a host of bad side effects, some permanent, and no benefit from the Letrozole. I was on it for fourteen horrid months while the cancer in the liver doubled in size and was subsequently microwaved away in February. I am very glad that I did not take Ibrance. Why extend the effects of Letrozole, a cancer drug that did not work at all, with Ibrance, yet another assault on the body ?

This coming Tuesday, I will be getting my first doses of Faslodex because of new, fast growing liver lesions.

I take it that you are so surprised that you graduated to MBC! So many of us are, who were never informed of the major possibility of MBC. Six years ago, I was told that I was CURED OF CANCER and here I am, going into another attempt at systemic treatment of MBC. Good luck with your treatment!

[TammyCross]

I was on Ibrance (targeted therapy) and Faslodex (estrogen block ) for two years, then they stopped working. Went on an oral SERD instead. I now have no estrogen in my body at all. -- Post menopause, your body still produces estrogen. Fat produces estrogen. I was puzzled that this estrogen block is working (it is extremely thorough) without any targeted therapy to go after the cancer. One oncologist explained to me that the tumors feed off estrogen (ER+). This medication is starving them, so they cannot thrive -- but I can. Anything that works! I hate gaining weight, too. It is a struggle. I wasn't eating much and was still gaining. Probably not eating well. I exercise a lot, but to lose weight, one has to consume more calories than one takes in. Weight loss is more likely with reduced calories than with exercise -- although that is important in its own right.

[Hazelgreen in reply to TammyCross]

Hi Tammy,I'm curious as to the name of the oral SERD you take. Do you know if it is widely available? I would prefer to take oral meds than to attend my local cancer center for shots.

I'm currently (last 5 weeks) on ribociclib & letrozole but expect that these may not work for long. I would have preferred to stay on double tamoxifen which was working well for a year before my oncologist refused to prescribe it.

I am likely much older than you, but I have stopped caring about losing weight. I've decided that my body needs its calories to help fight the many mets I have (lungs, bones, liver, etc.). However, I probably should exercise more to stay strong so I admire your doing so.

Regards,

Cindy

[TammyCross in reply to Hazelgreen]

Cindy, it is in a clinical trial, early phase. Definitely not available generally. There are other oral SERDs that are in later stages of trials and some may soon be available -- or sooner. Several pharmaceutical companies are developing them. Mine is from Zeno, a late comer. It has no name yet. Discovered to my great disappointment that, although it is just a capsule taken once a day, and I have two months' worth, I must return monthly for tests and a new supply. It is the protocol of the trial that I have blood drawn, ekg (? don't know why), turn in my diary, and get a new supply exactly every 30 days. Well, there are a couple of days leeway. It has tied me down. The testing takes most of a very boring day, mostly waiting. They have to analyze all the tests before they can order the capsules from the pharmacy, and then the pharmacy takes a couple of hours to produce them.

[Hazelgreen in reply to TammyCross]

Thanks very much for your quick reply, Tammy! I did read your profile after I wrote my query so I wasn't disappointed to learn that you are on a clinical trial.

It does sound like the trial protocol consumes a great deal of time unnecessarily. It seems to me that the drug companies could be more considerate of patients, especially those helping them run a clinical trial! After all, if the company gets the results the shareholders want, profits likely will climb....

I wonder whether clinical trials involving male participants are as poorly organized as the one you're in. So often, it seems to me, women, especially older women, are expected to be grateful for very little help.

Anyway, here's my thanks for your contribution to the SERD trial!

Cindy

[PJBinMI]

Letrozole was my first treatment for MBC, which was diagnosed in early 2004, way before meds like Ibrance were around. I was already on Celebrex for pain from arthritis and didn't develop any cancer related pain until very recently. But the worst side effect was having hot flashes that turned my face and neck bright red and sent sweat rolling down my face, multiple times a day. My wise old woman onc prescribed Effexor ER for those hot flashes and it reduced the hot flashes to what I call warm surges, very tolerable and much less often, perhaps once or twice a week at most. I currently am taking three 75 mg a day, 150 in the morning and 75 at night. I needed more than for the first few years. One thing this lousy cancer has taught me is gratitude for meds that reduce side effects and/or improve quality of life. The only med I have had to go off due to side effects has been Ibrance, which I took for just a few cycles in 2016. It did permanent damage to my lungs and now I get out of breath very easily, sometimes just walking a short distance, like 50 ft. People have mentioned having your thyroid checked. Low thyroid can be a challenge--I think it took several months to find the right dose of synthroid, but now I've been on it for nearly fifty years. Primary care doctors and internists have been the doctors who have treated it for me. And compared to most prescription drugs, it is really inexpensive! Good luck to you! I hope that you and your medical team can find the right treatment for you, that will control the cancer cells and also give you good QOL!

[Red1246]

Hi Lark!When I had stage 2 breast cancer 10 years ago, I was on Arimadex once I’d finished chemo and 7 weeks of radiation. It’s another aromatase inhibitor like Letrozole and I gained 20 lbs very quickly and had joint pain in hands, back and knees. I decided the quality of my life was important and as I “only” had stage 2, and genetic testing showed I was low risk for recurrence, I stopped taking it.

I’ll of course never know but now that I have MBC, I question the wisdom of my decision not to try another aromatase inhibitor.

I am now on Ibrance and Letrozole since my diagnosis in 2019 and have not gained weight from the AI. I’ve in fact lost it and put this down perhaps to eating more veggies and fruits; mostly poultry or fish and only the occasional treat of other meats. I’m also walking a lot each day which is also great for improving the immune system.

As others have said, there are many factors contributing to weight gain and it would be good to check those out. I hope your oncologist can help and wish you the best in your ongoing treatment.

[Hazelgreen]

Thanks, Sandra, for your reply. I wonder whether Saskatchewan (I'll check its drug formulary) has the same restrictions as Alberta. I find it ridiculous that Canadian cancer agencies are willing to pay so much money for specific meds and yet, not try to save the same person with other expensive ones. It makes zero sense. It is as if we can only spend so much, on average, per person.

I am grateful for our socialized medicine generally, but I'm incensed by the arrogance of overpaid (up to $500, 000 monthy here) oncologists who refuse to read research studies when making decisions, insisting that "I must follow my guidelines". My thought is you need very little training indeed to mindlessly follow whatever a group of peers states. Anybody who can read can do that!

One of the most annoying situations to me is the repetition of the results from the original clinical trials for the targeted treatments. It was never the case that all responded better to a targeted treatment (say Ibrance + letrozole), and none responded to the AI alone (say letrozole). It was the case that more responded (say 43%) to the combination, for longer on average, than to the AI alone (say 36%). We just don't know which of us belongs in which group.

We don't even know the characteristics of those who responded to neither (how old were they, what type of breast cancer did they have, how long had it been since they had early breast cancer, were they overweight, etc.) Even if we're given the combination, and that seems to work, we just don't know whether we might have done as well on the AI alone (unless we took it previously). Breast cancer research does not seem very advanced if treatment cannot be personalized more accurately.

Enough ranting! Thank goodness for this forum for its conversations and support.

Cindy

[Bexly]

I have MBC to my bones. I’ve been on Ibrance and Letrozole for over 3 years. I’ve never had any problems whatsoever.

[Hazelgreen]

Thanks, Sandra. I think you're right that we can only do what we can do. We probably could go south once Covid has gone underground, and pay for treatment there. Our difficulty here is that we can't opt to pay for any treatment that I know about. Yet, we're given restrictions regardless. Some restrictions make more sense than others; especially since Health Care consumes about 40% of the Saskatchewan budget, and that's with a Conservative agenda!

In de novo cases such as yours, it seems to me that treatment should have started first with an AI alone, and when that seemed to fail, have added one of the target drugs to go as long as possible. From what you've said, you've done well on the combination, but we'll never know for sure whether you would have done as well on the AI alone.

Take good care of yourself,

Cindy

[jersey-jazz in reply to Hazelgreen]

Dear Hazelgreen and girlsptz----Budding into your discussion of the frailties of the health care system of Canada; that it is limited and that there is a choice to get health care outside the country, I so admire your democratic system that is working to supply good health care to everyone. Having lived in Scotland for many, many years, I was fortunate enough to witness the wonderful care given to my husband, without insurance strings attached.. The commercial health care from the USA was just beginning to infringe on the NHS, when I left. The companies were buying up old hospitals, tearing them down or refurbishing to a high standard of surface beauty. They offered the well healed an alternative to the strapped, inefficient NHS. I saw it as a Trojan horse. Commercializing the health care offerings in Scotland has brought the NHS system in Scotland to its' knees. I gather from your writings that commercial health care enterprises are not allowed in Canada. Is that true?

[Hazelgreen in reply to jersey-jazz]

Hi Francis,

Thanks for "butting in" and reminding me of the reasons why the Canadian system does not permit a two-tiered system with alternatives for those that could afford more. It is true that, with all its limitations, we are very fortunate to have what we have, and I should keep that in mind.

My main complaint really is with the nature of a civil service where those in control do not have to be particularly well-educated in their field, or necessarily develop logical rules based on science before making decisions. However, that is true of civil services in countries such as the USA with rampant capitalism as well as more tempered systems such as our own.

We do live in an imperfect world fashioned by our forebearers and all of us imperfect people.

Warmest wishes,

Cindy