Thank you for such a warm welcome to the group. I think I forgot to mention some of the medication I've been put on. Letrozole 2.5mg, Palbociclib 100 and an injection of Zoladex. I also have an underactive thyroid. I'm not able to convert the synthetic hormone tablet Thyroxine that the NHS give people with my condition. Thyroxine didn't mix well with the forementioned drugs above. Too much for the liver to process.
I have to import Armour Thyroid or Nature Thyroid from America. These products are from Pig or bovine sources.
Since taking the Palbociclib I have episodes where my stomach swells especially on my right side and it is very uncomfortable and impossible to sleep. The swelling isn't a result of eating heavy meals or eating late. I dont eat after 5pm
I've gained amount about a stone and a half since starting the treatment and my hair has become thinner. I have introduced juicing into my diet and that has been a game changer with fighting fatigue.
I was off the Palbociclib for 6 weeks due to coronavirus outbreak and my stomach didn't swell during this time and the bags under my eyes have improved. I certainly noticed a lot less hair in my brush. Please don't get me wrong I'm very very grateful to be alive and I know that I owe this to this amazing drug. Back on the treatment now day 6.
I would like to ask if any of you ladies are on a palbociclib dosage of seventy-five. I'm finding it very difficult to convince my my oncologist to drop me down to this dosage. Do you still get good results on the lower dosage?
I also have pains in my arms and armpit. I think this could be as a result of the damage to the lymph nodes and generally my joints are very stiff and weak. Ladies could you recommend anything to remedy these side effects. I've started moving like a 80 year-old even though I'm only 55 . I walk every day and eat well.
Thanks in advance for all your tips and help
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Biddy007
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Hello. I too experience stiff joints specially when I wake up. I am on Letrozole and Palbociclib as well. I also do walking 5 km a day but it tires me so I decided to try Tai Chi and Qigong for beginners. Search for Tai Chi and Qigong for beginners by Don Fiore. He has 9 minute and 20 minute videos. His exercises are very relaxing.
Stiff joints are a common side effect of aromatase inhibitors, such as letrozole. I am on some of the same medications as you (letrozole and zoladex) just not ibrance, so I can't comment on that drug. I'm sure that other ladies who are on that drug and are more familiar with it can chime in with some good advice.
But as respects the joint stiffness, the key thing is to keep moving and to be as active as possible. I try to workout five times a week, and I also walk a lot, which helps. Epsom salts are also a good way to soothe aching joints. I started adding them to my bath in 2018 after I was diagnosed and I noticed a big difference. I don't have the same problem now as my body adjusted and I am active, but I have carried on using Epsom salts.
I would make a list of all the side effects you have and mention them to your oncologist, oncology nurses or even your GP. There are ways to manage side effects. Some may be lifestyle changes, while others might involve a supplement or drug. It sounds like you need some help with your underactive thyroid too. Don't think that because it's not cancer related that it should be put on the backburner. Every symptom and issue you are having should be addressed so that you can start seeing an improvement to the quality of your life.
Also, if you do not already receive a local anaesthetic when you have your zoladex injection I would ask for one. I get one every time I see my GP.
I’m writing this one quickly so I’m sorry if it’s a bit abrupt. So, seems likely the ibrance is really the cause of your liver swelling if it didn’t happen while you were off it. I would definitely push for a lower dose.
Glad you are juicing, that’s great! In regards to your thyroid - if you research or better still find a nutritionist/ natural therapy doctor they can guide you on what foods to avoid to help your thyroid. Some healthy foods actually work against what you need for your lack of thyroid production.
Lastly, stiff joints is likely from letrozole. You could try the above mentioned remedies, if that didn’t help you could ask your doctor if you try one of the alternatives. Sometimes just switching to a cousin of the same drug can lessen your side effects.
Lastly keep moving all your joints as much as possible. Walking is wonderful exercise but it doesn’t properly mobilize your elbow, shoulders, spine or even your hips. You need to work the joints through their full range of motion. Try putting some music on playing with how to move each of your joints smoothly through their full range . It helps lubricate them and then hopefully less pain.
True. I tend to walk and that isn't enough for the rest of the body. Gyms are not an option any more with weak immune system
My wife has been put on 75mg Ibrance (palbociclib) after she had a bad reaction to 300mg Verzenios (prescribed after Letrozole stopped working). She is currently on her third cycle and has not had any serious side effects thankfully. I never understand why the protocol is to start on the highest dosage first. The Verzenios left her bed-ridden for a week with dangerously low levels of white blood cells. Last blood test results were ok according to a telephone consultation with the oncologist last week, so hopefully the lowest dose Ibrance is still effective.
Glad to hear that your wife is doing well. It's so odd what meds you can and cannot mix with chemo. Everybody has an individual reaction. Before starting treatment last year. I had a slightly non-alcoholic fatty liver, I must ask for another scan.
Hello Biddy ! Just seen your post and was wondering if you have tried glucosamine ( there is a vegan one ) for your stiff joints, which is a common problem with those taking Letrozole . (me too !)
Other than that , keeping moving and any exercise all help . I have recently (at 56 ) taken up gentle cycling (on a hybrid e-bike ) and find that is great for my lower joints . I only ever lift 1kg weights tho’ and not too many repetitions as I had a right axillary clearance so am at risk of lymphodema on that side , were I to overdo it ! I never carry anything heavy on my right side now ... I still manage to garden , weed and mow the lawn , but I know my limits and don’t overdo it ! Ask your onc or nurse about what you can do too and what you can take . Take care ! x
I also have tried Qi Gong ( a form of Tai chi ) and found it helped with the stiffness , but haven’t been for a while due to the pandemic , but there may be classes on you tube ?! I found the slow gentle movements very relaxing too x
dx July 2015. NEAD March 2016 scan. Anastrozole 1mg daily. Lupron injection quarterly. Ibrance 75mg, 14 days on/14 days off. plant based diet. exercise. take Arnicare Arthritis (homeopathic), by Boiron, for joint pain.
Biddy I did a search for you to get some ideas. (I teach fitness). The gym is not the place to be now even if they were open. This is a basic strengthening program that will help even if you only do some of it. It’s very well explained. (I can’t find range of motion examples right now ). However when you look at this you might laugh but ignore the gym-style weights being used in the pictures! You can do the same moves with either nothing in your hands (a good place to start to get you moving) and then later by holding soup cans as weights.
This really should help.
For the one lying back on a bench you could just lie on your couch or a bed. Same effect.
IMPORTANT NOTE:
The only reason any of this might not be appropriate for you is if you have lymphedema (swelling in a body part due to the lymph nodes not coping with fluid flow). SO, it is ESSENTIAL that you first call your oncologist and ask if it is ok for you to try doing any light weight exercises. Please don’t skip this part!
I hate to think of people suffering needlessly. I really hope this helps. Exercise is the key to improving how you feel.
The link is a long article so scroll down to where it says “The Best Strength Training Exercises for Beginners”, and take it from there. But do call your onc. before you begin
I have been on Ibrance 75 for 2 years. I started out at 125 and dropped to 100, and then 75 by the 3rd month. I’m due for a scan next month so I’m hoping it is still working, but it has worked until now. I don’t have too many side effects except for tiredness.
I don’t juice! I try very hard to eat a well rounded diet. I do eat a lot of fruit. Elaine
Hi, I’m on Ibrance, Letrozole and Denosumab jabs. When I start my Ibrance after a weeks break I ache all over for about 3 days. It soon passes. I get a swelling on my right side sometimes and it hurts but again it passes. I can manage to walk 4miles round trip but my hip and lower back hurts. I think like some of the ladies have said gentle walking or excersise seems to ease the pain. As soon as I wake I have to get out of bed and walk to release my joint pain. I’m off my Denosumab jabs till i go back to hospital in July. Ive got 3 months supply of Ibrance as they don’t want patients visiting for appointments with the virus. The Denosumab really eases my pain but my Oncologist has said I can afford to miss them for a few months. I hope things ease for you. Have a good weekend. Cheryl
Yes updates would be great. Excuse my spelling originally. Fat fingers I call it ha ha. My hip hurts like mad today but if I go for a short walk in my empty City it will ease. Have a lovely day. Cheryl
Thank you for such a lovely email. I have just started taking glucosamine but never heard ofbitter cherry. I will let you how I get on. I too juice. I agree that it is a game changer. Going to see the oncologist in 2 weeks i will let you know how I get on.
Hi and welcome to the group. I’m on the same medication as you and I have found a few things that seem to affect my joints. Do you drink enough water? I always get achy on days I don’t get enough water in me. Also look into changing to a different brand of Letrozole. I have found a huge difference between brands. It’s still Letrozole but different companies use different carriers. The doctors will tell you it won’t make a difference but it really does, I feel it in just a few days and one brand I can’t be on at all as it affects me so badly. Do you take Ibrance with food?
I will ask about changing Letrozole. I alway sandwich my Palbociclib inbetween my main meal. If i don't drink enough water I cough for ages before going to bed. My lymph nodes over my lungs had expanded to 26 mm with cancer. I think long term palbociclib is not good for your lungs.
Waiting for the date of my next CT scan. My last two were NED. Such a tense time waiting for the results, all sorts of dark thoughts cloud over the situation.
I have been juicing which is relieved a lot of the fatigue and just recently start to brewing kombucha. This has been a game changer with y energy levels.
I am really interested in Dr James Hull and his is car t cell research. Unfortunately he is not taking data from cancer patients in Northern Ireland. If you live in England it maybe worth looking into his work
Ahhh— joint stiffness it is my morning routine. I do find for me that moving helps. I find my body is also sensitive to sugar— and seems to make inflammation worse. I have also started taking CBD and it seems to help as well. I just keep experimenting.
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