just had a PET scan which showed no active cancer. Onc says it shows a complete metabolic response. I’m amazed and incredibly happy. I’ve started my 4th cycle of Palbociclib and Letrozole. X
I also struggle on my “week off”- nausea, lightheaded, off food-
im glad it’s not just me.
I thought that during the week off our levels would build up - but maybe not?
Raised liver enzymes are a side effect of Palbociclib. I think it depends how high they are. Mine are often around 2 times normal, but I think the onc gets concerned when they are 4/5 times normal.
I’m on my sixth cycle of palbociclib and, apart from having to delay treatment for a week this month I’ve felt ok on it. However, just had results of blood tests for a different medical condition and they have come back showing high alkaline phosphotase. Anyone had this? Is it a sign my liver isn’t coping? Really worried now as was hoping to stay on this medication for a few years.
Thanks Joycem. It is always good to know that what you are going through is normal (😱) for that treatment! I get your point about the week coming at the wrong time; I thought I might need antibiotics last week which would probably have put off treatment for a week and ruin my plans. Fortunately I didn’t, so holiday this week with grandson was on week one, my best!
the post nasal drip is interesting. I thought it was hayfever and am on tablets from the GP - still horrid swallowing though - yuk!
Hi yes I generally feel worse on the week off the pal. and have noticed that others have commented the same.
Unfortunately I was "off" the last time I saw my Southern family and i am due to join them next week for a holiday and ...guess what I'm "off" again. Can't be helped as we obviously have to stick to school holidays but perhaps if the sun shines and my son does most of the cooking I will keep smiling along the way - as we all have to don't we?!
Generally I have found this combination really good with few SE, but I do suffer a bit during the week off palbo! I get lightheaded and can have the runs, particularly on days 4/5. Bit weird as the drug level must have dropped by this time. Nothing terrible, but I have to plan ahead to avoid comments at this point. On chemo I gradually felt better during the week off rather than worse; is this just me or do other ladies find this too?
Think the planned breaks are a great idea . I was still initially working but went off b4 pandemic in March now happily retired . I would say ask about lansoprazole ASAP as I did without for first month snd struggled with nausea it also seems to help with diarrhoea. I try to eat health smaller amounts and siestas for fatigue also take naproxen for joint pain walking is also good for bone mets I have info from american oncologist will look for link. Heat pads also good I had bad hip pain and I used them supermarkets and pharmacy sell them . Sending love liz x
2018! That’s giving me great hope thanks for getting back to me, any top tips to get through early days? We’ve got a couple of holidays booked wondering about those both in uk only about a 2 hour drive. Hoping to be ok to go!
thank you Judith
Hi Judith I've been on palbo and letrozole since May 2018 for mets in pelvis lung and base of spine all mets stable on treatment was on 125mgs then 100now on 75 mgsfor past year which is keeping this stable reduced dose due to low neutrophils. Side effects have been manageable initially nausea diarrhoea but advice to take lansoprazole which helps plus drink plenty water . I take my dose at night. Sending you love hugs and positive vibes Liz 💗 x
Hello I hope you are keeping well, ive just been told I’m going on this combination for Mets in my spine. Just after advice you can offer thanks Judith
Was looking through posts on this site & your experience was helpful. I’ve been on Palbociclib & lertrozole since May 2021, 125mg. My three monthly bloods seem to stay a level I can carry on at. 3Monthly PETS showed dramatic drop in activity level at first & now still going down but much more slowly. No new sites 👍🏻
When & why did you reduce the dosage? Fatigue & breathlessness? Did reduction help much x
Hi I'm just starting my fifth month on this combination. I have been fine so far and my first scan results show shrinkage in all areas. I just wanted to reassure you because when I was first given the tablets along with anti sickness and anti dihorea tablets and told to buy a thermometer I felt very unsure and scared like you .
All the best and hope this helps you.
Have you ever experienced side effects such as Post-nasal drip or dry cough during these years? I'm on 4 months . A Post-nasal drip started suddenly. The FDA has reported 17 patients because of letrazole. Estrogen level dropped below 0.5. It happens to some people during menopause accourding some reports. My doctor does not know about this side effect.
Tehere is a ribociclib/kisqali group on Facebook. I advise it. There a lot people who has successful treatment
Hi mindy63 I have been on palbo and letrosole for over 3 and a half years for mets in lungs pelvis and base of spine main thing was stomach/bowels for me but went on 15mgs lansoprazole after first month recommended by hosp as its a common side effect only take it occasionally now as needed. I take letrosole at lunch and palbo at night with a small snack also drink plenty water. Sometimes neutrophils are low and I had to miss a week but been on lowest dose now 75mgs and counts been OK over last 6 months and scans 3 to 4 monthly so things stable. Sending hugs and positive vibes Lizx
Hi thanks for that info, at least I know that it isn't only my department making mistakes . Perhaps I should look for a support group like you but I feel I'm a bit ancient for facebook. I wish you well and thanks again.
Hi I’m on Palbo and Letrozole since March this year and yes I’ve had mix up on meds not sending. My bloods are now every two months and apparently my scans are now every 6 months. I get a phone call never at the time it was supposed to be and I don’t mind that so much as I know they are busy. But she doesn’t always seem to get the facts straight and I think she’s just too stretched.
Without make2ndscount on fb I would be very lonely as there are no support groups or places like Maggies anywhere near me.
Yes, my oncologist reduced the dose because he said I looked very strained. I've found the 100 mg much easier to cope with but I do get very tired. It's all manageable though and I'm just grateful there is a treatment to keep me going? Hope all goes well for you too.
Hi I realise that this does not answer your question but I am now in my fourth month of the same treatment. I never see anyone and only receive a five minute phone call once per month- if I am lucky - last month I had no phone call and no prescription ready for me either. I wonder if you have had the same lonely experience for however long you have been on this treatment. I realise that the Oncology departments are overstretched but must admit I might as well be on Mars.
Thanks that’s positive 👍
Did you reduce the dose to help with side effects ? Has it helped much? I am managing ok on the 125mg but assume effects will continue to be cumulative ?
Hello diweb, I’ve have sbc in two vertebrae. I’ve been on Palbociclib and Letrozole for just over 4 years. I started on the 125 mg dose but now take 100 mg. I have scans every 4 months and the last one thankfully showed no disease progression. I’m hoping that will continue for a good time!
Its not easy, I find I get extremely tired and the meds make me breathless when walking. I get some joint pain and take paracetamol to help. But at the end if the day I’m still here which I never expected to happen when I was first diagnosed. I’m so grateful I’ve been around to see my second grand child born.
Good luck with your treatment. You can do this!
I’ve recently come off Palbo as my quality of life was naff. Letrozole is keeping my lung mets stable. On the combo since October 2017 until last month. Best wishes. Ann x
I've been on this combo for 3-1/2 years since about Feb. 2018. Started Ibrance at 125mg, reduced to 100 then 75. Have been stable with no spread for over 2 years on 75mg.
I know more than a few American ladies on this combo for 4+ years and one starting her 6th year (and she scans yearly only). I believe there are still some women from the original trials who remain on the same treatment.
Obviously we are all individuals and there are always extreme outliers but its not inconceivable!
Thanks Liz - that’s positive news
I spoke with my oncologist this week and he confirmed he has patients on 3+ years - hope we can keep going on this as I seem to tolerate this fairly well ( all things considered!)
I am just 3 years in and scans stable there are several on here been on it longer and I was told as long as its keeping things stable I will stay on it . Liz x
I am starting this shortly. On letrozole now. Oncologist told me he has another woman same diagnosis as me, secondary breast cancer spread to spine. She is in 3rd year now
Thank you for your post.
I am sorry you haven't had any response yet. I am hoping my response will help our members to see your post and share their experience.
Sending you our best wishes,