Ibrance

[marianne88]

Has anyone been told they can go amerdix and faslodex and come off ibrance after Ned for 2 years

[Hidden]

Hi Marianne...Gosh, I'd certainly wait to hear from the group, but that sounds unusual. Ibrance can work for many years...why change what's working? There's some discussion re: "taking a break" from Ibrance, due to low blood counts (I sort of question this...my blood counts have been abysmal, but I've had not bad effects from this) or, based on some laboratory studies, to "re-set" it. Your situation is, honestly ,unlike any I've heard. In my humble opinion, don't do anything until you get a very good second opinion...Be well, Lynn

[Barbteeth]

I agree with Sandra and Lynn

I’ve had to stop mine for 6 weeks while I have my radiotherapy but going back on it

My oncologist will only change to another regime if really necessary

I would question this

Barb xx

[Rhwright12]

Hmm interesting! I’ve heard people on being on just Letrozole for years...I guess it depends on how ER+ u are...My first tumer was 90% ER+ so I guess that would work as a maintenance...a few variables there but it could work...in Japan they’ve just approved Turkey Tail for first line of treatment for early stage BC...could u imagine? Your doctor saying lose 10 lbs join the gym and take this $19.99 bottle of Turkey Tail (mushrooms no birds were harmed in this process) and come back in a month and we’ll recheck your liquid biopsy...😀...

[Hidden in reply to Rhwright12]

I hope you are right! I am taking letrozole, but not ibrance, and hope to stay on that for many years. Isn't it interesting how differently doctors act around the world? My GP or oncologist would never tell me I need to lose weight, how long to workout for or anything like that. In fact, when I told my oncologist I go to the gym and how active I am, I asked if she had any recommendations about doing more and she had no opinion on the matter. She just said it was up to me if I felt like exercising more.

In the past, she has recommended I treat myself to more Chinese takeaways and chocolate (I kid you not. It was what she wrote in a letter to my GP!) I was also told by an oncology dietitian that daily "treats" would be fine. When I pressed my GP about exercise last year she mentioned swimming and cycling. It's funny how doctors seem all about health and well-being when we are well, but once we develop this disease they seem to want us to eat junk food and "enjoy" ourselves. Or is it just me?!

Sophie x

[Rhwright12 in reply to Hidden]

Yep! When the doctors tell me I look good I tell them I did a 5k May 4....I believe there is a connection...I started taking Essiac Tea in January for my bone mets...they are slow growing but don’t always respond to targeted therapies...so I did my scans at the end of May and all 14 of them are gone! (I’m 3 years this month) I think adding these things to our regular protocol really helps and lowers side effects because of the detox effects of organics as well...😀

[Hidden in reply to Rhwright12]

I'm glad I am not losing the plot then, Heather! Good for you for running 5k! That must have made you feel great afterwards. I have never been much of a runner, but I can easily walk that distance in a day when I am out dog walking. I just don't have the stamina to run.

I agree that keeping physically active must play a part in how well we feel. I feel fitter and healthier than I ever have. That can't just be a coincidence. How can I feel better than I did before my diagnosis if it doesn't have anything to do with my lifestyle changes? I'm sure treatment has played a big part as well. I don't doubt that. But adding other lifestyle changes must also be a contributing factor. I've heard of Essiac tea, so will have to look into that. Do you take a supplement or actually drink the tea?

Sophie x

[Rhwright12 in reply to Hidden]

I take the supplements...I was worried about buying the tea. $60 for 3 months isn’t bad but then I thought what if it tastes bad? 🤷‍♀️ Then I’m out a lot of money for yucky tasting tea...😀

[Hidden in reply to Rhwright12]

Hi Heather,

Thanks for letting me know. I will take a look on Amazon. Is there a particular brand that you would recommend? I feel the same about wasting money. Every little bit adds up and having cancer is hardly cheap! What with the different supplements to pay for, drugs I pay for privately (my GP and oncologist won't prescribe my off-label COC drugs for me for free on the NHS), as well as the private doctors I am also seeing I try to be frugal in other ways.

Thanks again!

Sophie

[Rhwright12 in reply to Hidden]

I get it through the Vitamin Shoppe here in OH...😀 u can order through them on line if u don’t have one in the area...😀

[Hidden in reply to Rhwright12]

Thanks for letting me know, Heather. I'm in the UK, so we don't have any Vitamin Shoppes here.

[LouisaMay in reply to Hidden]

Hi SophSP,

Just wanted to let you know that I used to make my own Essaic tea. I had triple negative BC thirteen years ago and had a mastectomy as my only orthodox treatment. As I was then free of disease as far as anyone could tell, it seemed bonkers to me to risk ruining my health with chemo. I used to buy the four herbs on-line from Baldwins and make a month's worth at a time. I stored it in the fridge in mason jars and took it twice a day for ages. My TNBC has not come back so far, my metastatic one is ER+ and a recurrence from one which occurred in the other breast six years ago. (I didn't use Essaic that time). I would be using it now but as I am Ibrance I don't want to risk interactions and finding trustworthy info on Ibrance interactions is difficult, probably because the drug is relatively new... anyway, the homemade Essaic didn't work out very expensive. It is on my long list of things to do when (if?) Ibrance fails. Best wishes.

[Hidden in reply to LouisaMay]

Hi Angela,

It sounds like you are doing really well. That is amazing that you have done so well following your initial diagnosis. Well done!

I like the sound of the homemade Essiac tea. Would you mind giving me the recipe? I have surprised myself with all the recipes I have adapted into healthier alternatives (ice cream, brownies, bliss balls, and more!) so I am open to new ideas too.

Sophie x

[LouisaMay in reply to Hidden]

Hi SophSP,

It's many years ago so I can't remember the quantities of herbs I used. Have a look at this:

thetruthaboutcancer.com/can...

The herbs and the method are definitely the same, the only thing I can't vouch for are the quantities of each herb but they look to be similar proportions to what I used. I used to boil it up in the evening and then let it steep overnight before reheating the next morning before decanting into mason jars.

I should add that I have no way of telling if using this was why my TNBC didn't come back but it certainly didn't seem to do any harm. I didn't find it unpleasant to take either. Good luck x

[Hidden in reply to LouisaMay]

Thanks for letting me know. I will have to look into that.

[kearnan in reply to LouisaMay]

If Ibrance fails, they have other medications. I had a rough time on Ibrance, especially my week off when I felt like I would die. All my onco had told me (It was my first bout with cancer and never had chemo, radiation, etc.) was that food would taste different and it never did. Then towards third week I was getting the chemo fatigue which would hit hard (and I was not used to it) so I was so looking forward to my week off and that turned out to be a horrible week. I was so sick...it was August and so humid here in NY and yet I was shivering..I could not keep food down, I felt like someone hit me with a bat. I was angry at her for not advising me about week off. Then found a forum board where for some women, they felt the same on the week off, yet there were many like me where their week off was the worst. I am now on Verzenio, another new med. 150 mgs. I could not handle and after two weeks, I stopped it, she lowered to 100 mgs. and still could not handle the side effects and stopped and now am on 50 mgs. (only my first week) and so far seeing a major difference in the side effects and its good so far but I don't want to get my hopes up until I am on a month. Ibrance caused a previous infection in my upper thigh to return. Normally, in the past, I would just get antibiotics from my primary doc and it would go away. This time two weeks of antibiotics on Ibrance and no change (it is a very painful condition). Then took me off Ibrance and another three weeks and still no change. I had to have surgery and was told they were going to cut tunnels in my upper thigh and the recovery would be very painful. Took me almost five months to recover from the surgery and the pain was unbearable. During that five months, all I was getting was my shots and when it was done, still no progression but my onco decided it was best to take me off the Ibrance and now on Verzenio.

[kearnan in reply to Hidden]

I think they are just meaning go on with your life and enjoy things as you did in the past. My onco knows I smoke and has never once (my stage iv spread to my lungs) made a remark to me about it even though she knows. I have change nothing in my routine. I have always hated vegetables and still do not eat them ever (except if they are cut in Chinese food LOL). I think they mean it is not going to make a difference one way or the other so enjoy what you like. Best.

[Hidden in reply to kearnan]

I can see where you are coming from. I suppose that could be what my oncologist was on about. I just felt a bit like they have given up on me, as if I have reached a point of no return, so who cares what I do or eat? I want more than that.

[needabreakfromcancer in reply to Hidden]

I was low on phosphates and my oncologist gave me a "menu" of things I was supposed to eat. Among them, chocolate, drink Coke, shakes, brownies, etc. Of course, I am aware that I am a borderline diabetic, but ate some of these things to bring my levels up. I don't overly indulge, however. Also, I am tiny, and lost 18 pounds after having gone through radiation on my thoracic spine for a tumor. He told me that they want me to also gain weight. I went from 118 pounds to 98.6 pounds, at which I am holding steady. I am 5' tall and very small boned. I do realize though that sugar is not the best thing for cancer. I do hear conflicting reports about this though. My doctor said they want me to eat healthy things too, but they wanted me to gain weight. He said the main concern about the sugar is that women who over indulge gain too much weight and that isn't good for breast cancer.

[Hidden in reply to needabreakfromcancer]

I can't say I am surprised at what your oncologist suggested because that's not the first time I have heard this. As you are borderline diabetic you should be receiving advice based on your own particular health needs. As I am waiting in the Macmillan unit to see my oncologist or for a treatment I see bowls of sweets. I've also been told to eat chocolate, and to "indulge" when I feel like it. This is after asking for dietary advice! Is that a healthy weight for your height? It seems like you may be underweight. I would week the advice of a dietitian or a nutritionist. I haven't had any success with receiving balanced dietary advice from my oncologist.

[needabreakfromcancer in reply to Hidden]

My dietician that is furnished by my oncologist recommended that I eat sweets and other things to help me gain weight too. They do, of course, say that I should eat healthy food too. I just incorporated blueberry shakes into my diet. Because I am a borderline diabetic, I called my primary physician who ordered the Metformin for me. He is a little more progressive than my oncologist is. Because my glucose level shows normal in regular blood work, my oncologist and other doctors don't seem to recognize the prognosis from the diabetic specialist that used the 8-hour test to diagnose me. I also come from a family of diabetics. I wonder how many cancer patients are borderline diabetics and are unaware, because the 3-hour testing fails to diagnose it. It's important if it is true that there is a connection between diabetes and cancer. Thank you for your response.

[Hidden in reply to needabreakfromcancer]

I'm glad you were able to get what you need from your doctor, rather than your oncologist. That's interesting about the link between diabetes and cancer. I hadn't really thought about it before. I keep saying we have to be our own advocates with this disease, and get the best care we possibly can.

[kearnan in reply to Hidden]

No, I don't think that they are giving up on you, they realize if as an adult, and I have been diagnosed with stage iv with mets to the lungs and continue to smoke, that is on me. And they are right.

[kearnan in reply to Hidden]

I am sure the onco realizes that for myself as a 59 year old woman, that smoking is the not the best thing for me. But I am sure some of them realize that patients are going to do what they are going to do. I think maybe they just think enjoy life the way you want even with the diagnosis. My onco in the very beginning suggested and recommended a nutritionist for me to start seeing. I said that would be a waste because I never ate healthy (hate vegetables and I would not follow a plan. Maybe you can ask your onco to recommend somebody.

[kearnan]

So true. Nobody is every really cancer free with breast cancer. I met so many women who over 10 years ago were diagnosed with stage 2 or 3. Had mastectomies, chemo, radiation,the whole bit and 10 years later they found she had stage iv in her life. I read where doctors believe that some cancer cells sleep for a long time and cannot be located and then they decide to wake up and thus women who were told they were cancer free are now stage iv. Years ago stage iv would have been a death sentence. Not anymore. I know too many stage iv women who have lived with this and their treatment for several years, and still hold down full-time jobs. I think of it has a chronic illness. I do know one woman on another board said after two years, her doctor said she just need the injections and amerdix but never found out how that worked out. I agree with the above. If you are NED after two years that means the medication is doing its job.

[Sister3nkc]

I would seriously question this. It is STAGE IV CANCER!!!!! If you are on a therapy that IS WORKING and you are tolerating relatively well, WHY WOULD YOU CHANGE "ANYTHING" ?!?!

I have been on Ibrance/letrozole since February 2015. I originally had stage 1 in 2000. Had partial mastectomy, chemotherapy and radiation. Was told I was "cured". In 2015 I was diagnosed with stage 4 with mets to my lung. I have been on Ibrance/Letrozole continuously and yes, I deal with the side effects but other than that I am doing ok.

I agree about not using the term "NED" too loosely. After 15 years my "cured" stage 1 resurfaced as stage 4. I'm happy they don't "see" anything concerning on my scans but after my own personal experience with recurrence I am realistic and know there really is no way to know for sure that there is not some ugly cancer cell lurking about waiting for it's opportunity to take hold.

[Scandia68]

I agree but will say I’m happy with the term NED. It means just that, no evidence of disease. It doesn’t mean that I for one minute think it’s not still lurking in my system just that for right now it’s not big enough to be seen. X