I am very happy to have found that this website. I was diagnosed with stage 4 breast cancer in February 2019. Breast cancer detected extensively in my lymph nodes but not in organs.
I've been on palbociclib for 13 Cycles. My last two scans were free of cancer. My body is struggling to continue with the palbociclib just wondering what other oncologists have suggested with regards to continuing the treatment if no cancer is detected on the scans
Thanking you in advance for your your Swift reply.
I’m not your oncologist, the person you should be asking, but in my opinion and experience, do NOT stop treatment unless advised by your doctor. Cancer is sneaky. It may not show up on your scans, but unfortunately it is not gone. This treatment is working for you. Stage4 is unfortunately incurable, but it is treatable. I hope you have great scans going forward.
Thank you very much for your thoughtful reminder that you can't let your guard down with this disease
Hi Biddy,
Welcome to this site!
It sounds like you are doing well on your current treatment. Sorry to hear that you are finding the side effects so challenging to manage though. From what you described it sounds like you may be NED (no evidence of disease) which is great. But it does not mean you are cured.
With metastatic disease we will have to remain in treatment for the long term, otherwise the cancer can progress. It isn’t the same as early stage cancer patients who have a shorter course of treatment and are then given the all clear. Having said that, it is possible to do very well for many years, so don’t lose hope. A cure may be just around the corner.
Sophie
Thank you
Hi Biddy007,
Congratulations on how well you're responding to treatment; my gosh, that's great! 
I'll just echo what the others have said...The meds are clearly doing a great job controlling your cancer, I wouldn't change a thing. If you're having problems with side-effects, I'd address those specifically to see what you can do to mitigate them. But, to me, they are a small price to pay for successful treatment.
Wishing you many years of continued success...
Lynn
Hi Biddy
Metastatic breast cancer means we will always be on treatment for the rest of our lives unfortunately...you didn’t mention the dosage you were taking...maybe a lower dose could reduce your side effects?...ask your oncologist
All the best
Barb xx
Hi Barb,
I am on 100 ml of Palbociclib. My oncologist is reluctant to drop me down to 75.
I was on that dose when I took Ibrance and was ok...just shows how different we all are
Before Ibrance ladies just took letrazole or similar with much success....now these targeted drugs seem to be prescribed for all yet don’t suit everyone
I guess you have to trust your oncologist but they’re not the ones putting up with the hideous side effects
Barb xx
So happy you found us! This is such a supportive and caring site.
I’ve been on ibrance now for about 22 months. Latest results I haven’t received due to Covid19 shutdown but I seem to be doing well Anyway the main point is I only had 125 for the first month, then tried 100 for a month, now been on 75 for the rest of the time (and still usually have to take a two week between doses to get my blood levels high enough) . So, I’d push your doctor to allow you to lower the dose, esp if you are NED (that’s great!!). It’s your body, and you need that balance between cancer maintenance and quality of life.
Also I’ve heard some in here say they’re doctors have let them take a bit of (couple of months) break from ibrance when they are NED so I can’t see why your doc should have a problem with dropping the dose.
How is your body struggling? Did you mean symptoms or liver levels or blood levels? If it’s the latter or first , then go for lowering the dose ! Just my opinion 
Hi 13,
Blood work on the liver function tests drop too low for me to continue with palbo sometimes.
But I have a different problem with my liver sometimes it just becomes really in lodged and swells my stomach out it's very uncomfortable my oncologist doesn't seem to think that is a problem and is only worried about the blood work.
I have a small amount of fattt non alcoholic liver.
Saying that I haven't had a liver scan since I began the treatment so perhaps I should ask my oncologist the next time I go to see him if he could repeat the test.
I have been NED for the last two scans. Hoping that my next scan in June will also be clear. I will approach the oncologist about dropping the dosage as it would be great not to have so many toxins running around my body.
Also my arms have become very weak as I've only had the cancer in the lymph nodes and my joints hurt.
I can’t speak for what is going on with your liver so yes, you might want to ask for further liver tests. I wonder if it is just a reaction to the IBrance? Another option if you don’t get what your looking for from your doctor is to seek a second opinion.
I would however start by trying to get more detail out of your doctor as to why your liver is behaving like that. I can imagine it is very uncomfortable when it swells.
Welcome to the board. My biggest problem with Ibrance is low WBC and no energy. I am in my 38th round. I took two weeks off back in March with doctor's blessing and I loved it. It was the first time I had taken a break. I have never had chemo before, but for some reason I feel like this is easier than others, but don't really know. Some of the ladies have had to lower their dosage and seem to do well on the lower dose. Some may have had responsibilities that I don't have such as working, school age children, etc. A warm welcome and best wishes to you. Blessings, Hannah
Hi Biddy,
Unfortunately, at 74, I am not young or fit. I am on 125, but started on 100. It was increased after about a year and a half because I had a small amount of growth. It was changed at my request. I feel really tired at lot of the time, but I want to stay on Ibrance as long as possible.
Talk with your oncologist. He/she may want to reduce dosage or change drugs. Most of the side effects that I have read about including Ibrance are not very pleasant, but different folks get more or less side effects from different drugs and we all have different tolerance levels for the various side effects. I have occasionally gotten mouth sores but they go away quickly and have not been a problem. The low blood counts are the biggest issue. Hope you find a treatment with tolerable side effects soon. Blessings, Hannah
Thank you
I was on 125 and could not tolerate that at all. Ended up in the hospital for 10 days in July. Kept struggling on that dosage but never being able to finish my cycle and having extreme fatigue. In November I dropped to 75 and have been doing good on that. Just had scans done and everything is stable.
Hope things work out for you💕
Thanks for the reply. Glad to hear that you are doing well. I wish you all the best x
Hello and welcome on here ! I was diagnosed stage 4 bc de novo November 2017 with low volume bone mets , but I too had bc extensively in my lymph nodes ( I had an axillary clearance with my right mastectomy , and 16 out of 18 nodes were positive) . I have been on ibrance 125mg since ...just started on my 30th cycle yesterday and tolerating it well so far . I have had side effects such as ocassional tiredness , thinning hair , joint stiffness, mouth sores and a rash during my 2 years plus on these meds , however I seem to cope okay with it and have found lots of advice on here on how to cope with the various side effects .My last 4 ct scans have had no evidence of active disease and my bloods remain good , however I will remain on this protocol until it stops working and then take my oncologist’s advice as to the next step . These meds are keeping my cancer at bay , but I wouldn’t consider coming off them for good ( until a cure is found ! ) . Take care and I wish you well ! x
Wow, you've been through the mill. It sounds like we've had very similar cancer paths but I haven't had any lymph node clearance as I've been told it's inoperable. Sometimes I feel the lymphoedema pains in my arms as I'm not too sure if the lymph nodes are working properly or scarred.
I had cancer in 2012 stage 1 and I was treated in Addenbrooke's in Cambridgeshire. I went on to have all my mammograms every year and three operations under Addenbrookes. In 2018 I moved to Northern Ireland went to the doctors about a sore arm to be told that I am stage.
Northern Ireland's health service is very first world and different from England. Obviously it has a less dense population. Do you live in NI?
People over here have been so kind to me and I have been helped by a charity called the pink Ladies. they put me on lots of nutrition and juicing courses. They also receive funding from the lottery to deliver nutrition packs to their members.
My stage 4 bc was only discovered during my right mastectomy / right axillary clearance /reconstruction , when the high number of positive lymph nodes were discovered , I was then advised to have a ct and bone scan , which revealed the bone mets . I then started on Ibrance /Letrozole , and then went on to have a left breast reduction while doing well on the treatment .
I live in Yorkshire , England , but my husband is from NI and we still have a lot of family over there, including my father -in -law , so do visit when we can .
We have the Haven centres over here that offer various classes and courses . Nice to meet you on here and you will find the ladies on here are lovely and a great help too . Take care ! x
Hi Biddy, thank you for sharing that with us. Great to hear that the treatment succeed for you! I have a similar case. I had breast cancer in the left side estrogen positive lobular. And now it came back in the right side axila and sub peitoral lymph. They say that they can not operate me now just if the lymphs decreases. There are some limphs close to the veins. But some doctors say that they might consider a radiotherapy. I am confused because they do have different opinions. I am taking Ibrance 125 and letrozol started 2weeks ago.Have you had a doctor for second opinion?
Breast cancer history 
Has anyone had breast cancer Mets in para aortic lymph nodes?
Breast Cancer on Brain.
Breast cancer in stomach
stage 4 breast cancer and hair loss
