Hi all. This is my 1st post. A little synopsis about myself. Diagnosed with breast cancer with Mets to bones and liver in Feb this year. On ibrance and letrozole mainly. I had a bit of a rough time with opiate pain relief which compromised my treatment and although I have been on ibrance since 15th February 2019, I have only completed one cycle to date, although I have almost completed cycle 2 :).
I always feel positive, despite the diagnosis and further progression in my bones. Not sure whether the culprit is Ibrance or his friend letrozole but I am starting to get some dramatic hair thinning which has started to become really noticeable, thanks to a very bright bathroom light. I know that I have trod this path the first time around with (DECT) and currently exploring whether to just shave off or get a shorter hairstyle... We shall see.
I would really love to know whether any of you have used pain relief that isn't opiate based? My pain is mainly in my spine and ribs. This has escalated recently and I need to practice some alternatives on my 7 days off (Ibrance). I have an appointment with my palliative doctor this Monday. Opiates are great for the pain, if you like the bonus side effect of constantly vomiting... LOL!!! - Another story for another day.. I am quite keen to get something sorted before I go on a 5 week holiday. Trying to get the right pain relief fit, will be a logistical nightmare. I do take paracetamol and arthrotec 75 for joint and bone pain but alas these are not really working anymore. I would love to know or appreciate any alternatives/ideas that have worked for you guys.
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sharronwiles
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Welcome to this site! It's good to have you on board.
I was in some pain after I started treatment in May 2018. It felt quite intense for a while, as I adjusted to the drugs. I knew I couldn't live on painkillers, so unless the pain dissipated I had to do something. I had palliative radiotherapy the following August, took some paracetamol, ibuprofen and a few codeine. But I also self-referred and had some physiotherapy, which helped a lot. I take Montmorency cherry capsules each day, which are a natural anti-inflammatory. I add Epsom salts to my bath each day, with essential oils and took advantage of six free complementary therapy sessions. I then started going to the gym on a regular basis last November. Exercise makes a big difference. So I would say a combination of factors helped me. I now feel fitter and healthier than I have done in years.
Thanks Sophie. Definitely some great options to consider. I think my greatest frustration is around getting to grips and embracing my new constraints. This new pain isn't related to overdoing it, which is usually something I can pinpoint.. I.e., shouldn't have spent an hour bending down and doing what I think is light weeding :). I am rebuilding my stamina with regards to walking, as I was suffering from breathlessness. That has all passed now. You mentioned some physio and some complimentary sessions..Essential Oils course maybe?! I wasn't sure what you meant specifically. I am pushing more my end to understand how fragile or not my spine is and what I can do and have recently had an MRI scan. I am really keen to understand my limitations a bit more. ... And finally keep up the good work X
You're welcome, Sharon. I know that it can be hard trying to work out what you can and can't do. I find that if I push myself (not just physically, but emotionally) then I end up feeling drained. So learning to say no to people or situations that come up is also important, as you need to take care of yourself.
Sorry I wasn't clear with what I said. Let me try and explain a bit better. I had six physiotherapy sessions at one of my local hospitals, which involved some 1:1 and also group back exercise classes. I had sciatica, so wanted to find ways to manage that. I also had six free complementary therapy sessions (five massages and one reflexology session) offered at one of my local hospices. I found out that St. Nicholas Hospice offers complementary therapy sessions to cancer patients, not just end of life care, so I took up the offer. The essential oils are just added to my bath or I use a diffuser.
I’ve been in awful pain since my T5 vertebrae fractured April 2018 which is when I was diagnosed with mbc
I’ve tried everything...had a vertebraplasty which didn’t help much tried acupuncture which helped a bit
I’ve had painkillers of varying strengths and I agree with you about codeine...it’s hideous stuff...however I try to manage with the least dose if possible and take more ibuprofen ...in an average day I’ll take 800mg ibruprofen with 2 30/500 cocodamol (or 2 8/500 cocodamol
I did try butrans patches but couldn’t function on those!!
If I’m doing anything active...riding my horse for example then I take some ocycodone but it does make me feel peculiar ...also constipation can become a problem ...I do think the meds cause some general joint aches and pains but I find walking and swimming helps with that
As for hair thinning...mines a bit scraggy so I have hair extensions and they’re brilliant and make me feel better
As for your holiday just take lots of different strength painkillers and take accordingly to how you feel
Sorry not much help but I sympathise with you as life is unbearable when in pain
Try and get a referral to a pain specialist...I did and she’s going to inject some steroid into my broken vertebrae so hope that helps
Hi Barbara. Thanks for your response. Luckily, the pain isn't too bad at the mo, but can feel that it has started to increase and want to ensure I have some tested options before I go on holiday. I know that I have medical insurance but would like to try and sort out some options especially as I will be in the US for 5 weeks. Plus, my oncologist palliative doctor and GP all know my medical history. I must admit that I had to double take when you mentioned you are still doing horse riding. I think that we need to maintain some normality but I don't think that I am brave enough to do anymore than ebiking, walking, swimming and gentle exercise. Please let me know how you get on with your steroid injections.
The pain consultant who did my injection was so gentle and kind and I hardly felt anything ...just shows how different clinicians can vary so much....I’ve had steroid injections before ( not always for mbc) and they were very uncomfortable
This time it was a lady consultant and so easy and painless...she’s also very glamorous and she told me she’s had cancer and chemo (no details) but I think being on the other side I.e being the patient has maybe made her more compassionate
Whether it’s going to work will take about a week or so to know so fingers crossed...I’ll be so happy if it does as I can have them repeated when needed
As for horse riding...it’s been my lifetime passion and I don’t want to give up...one of my horses is ridden by my daughter vanessa...I ride the other one who can be a bit spooky but we understand each other!!! At the moment I’m able to go for steady rides in the woods and when I’m feeling reasonable I’ll have a canter...I do wear an air vest which blows up if you and your horse part company!!!
Before diagnosis I was in agony. I couldn’t bend to get dressed or lift my knees enough to walk upstairs. Then I was diagnosed with wide spread bone mets and a fractured vertebrae in April 2018.
I had palliative radiation to the spine which made a huge difference. The oncologist accepted I was in severe pain but told me to take nothing stronger than paracetamol and wouldn’t prescribe the pain relief suggested by the orthopaedic consultant. I also used a tens machine which took the edge off. And heat pads and infrared light. Despite the pain I continued gentle exercise - walking and swimming. Once established on faslodex and ibrance I felt a huge but gradual improvement though the pain returned to joints when I had to switch to letrazole in January and went again when I went back to faslodex. The Oncologist told me that pain is a common side effect of letrazole.
I also take sour cherry juice which has improved joint stiffness tremendously.
I now do Pilates as well as cycling, swimming, walking and archery. As well as continuing to work full time.
When I got my diagnosis I didn’t think the pain would improve but over time I’m now back to my prediagnosis self. I appreciate it’s not the same for everyone but don’t despair it can improve.
Hi.. thanks for taking the time to reply. I must admit because the pain has been far worse @diagnosis, I don't want to use up my radiation choices up, just yet. It may be that because my condition is now stage 4 that I can have as much radiation as and when I want.. Something that I will need to explore. My research is making me believe that letrozole could be an issue and it is as if you were reading my mind because I was going to talk to my oncologist about faslodex. I am not quite at despair point and hope I never reach it but really keen to get my ducks in a row before I go to the states in 2 months time. Hubby and I are going for 5 weeks so I want ensure I have a backup plan. Sounds like you are doing well and thanks for your tips.
If you are the uk you can't have faslodex as a first option until you have tried the much cheaper letrazole option. I started private, then my husband lost his job and had to return to the NHS, hence my month of letrazole. If I'd gone onto letrazole first I probably wouldn't have noticed as I didn't have a good time on tamoxifen and I would have just accepted the side effects as being from the cancer.
I had a full page of side effects from letrazole including depression and feeling suicidal. Which is not me at all! Within a couple of days of stopping letrazole I was back to normal. My oncologist looked at the list and observed that most of the symptoms I'd experienced were accepted side effects - including severe bone and joint pain. Because I'd tried letrazole and wasn't willing to continue with it, the oncologist said that I could return to faslodex.
Though I have since found out that like tamoxifen, some brands are better than others. If you can't change drugs it might be worth trying a different brand.
If you do get faslodex there is a lot of advice on here about making the injections easier. For me they were well worth it to feel well. Though everyone reacts differently to these drugs.
It seems that ibrance and faslodex are standard first line treatment in the states, so you should be ok.
Radiation is still limited at stage 4, but I was told that the amount they give you for palliative pain relief is just a small dose. I've always taken the attitude that I want to feel as well as I can now rather than have years of pain so I can get some relief later when it will probably be less effective.
I've also found caffeine shampoo to be effective when my hair started thinning.
Thanks again for your reply Julie. Did you find that there was an improvement with you hair thinning also when you switched from letrozole to faslodex? I have had a lot of hair thinning both in mass and hair strands looking a lot thinner and wiry. I originally assumed it was due to the ibrance, or letrozole brand change. I also feel like my scalp feels more sensitive and itchy the last 2 months since the switch, but didn't really make the connection. I will certainly try the caffeine shampoo you mentioned.. Really glad that I have found this group :). I think it needs to be a case of trial and error and discover the options and see what works best for me. Thanks again.
I started with faslodex and ibrance. My hair is very fine and there's lots of it but it doesn't look thick.
I noticed that my hair started shedding after around 3 weeks into my first cycle. My scalp was also itchy and irritated. I started using a caffein shampoo and it didn't stop the shedding but reduced it noticeably. My hair line has receded at the sides and is thinner at the front than it was, but I don't think it's obviously so.
I don't think I was on the letrazole for long enough to notice any difference. The shedding and irritation was gradually reducing over the summer and I have had some baby hair coming back.
I'm now a fortnight into my new drug regime so I will see how that impacts on my hair.
I put a tablespoon into my watered down orange juice every morning. It took 3-4 weeks before I noticed that I was walking up and down the stairs at work pointing forward rather than having to go sideways to ease the pain in my knees and hips. I take it most days but if I forget for a few days the stiffness comes back.
I had radiation to spinal Mets in 2017 and it helped a lot. I have held off getting more because I need systemic treatment I can tolerate to shrink the Mets. I had two bad reactions already. I am in pain from sciatica- starting to ease up but was horrific for a while. I take dexamethasone( steroid) for it and Advil. Ice packs. Acupuncture. Lidocaine patches at night.
Can not tolerate opioids/not an option for me.
It’s a constant adjustment to new normals for each of us and it is a bitch of a roller coaster ride. Have to look into what works and doesn’t for you- that’s a full time job😳
Again, I welcome you. We are all here for one another and that makes this ride more bearable.
Hi Frances. Thanks for your reply. Sounds like you have had a few challenges along the way and would like to say thanks for the welcome and for sharing your experiences. It sounds like we both have issues with the opiates and a bit ironic that I fought for a long while in the beginning and was determined not to take them. I did learn pretty quickly that no-one should be in pain and we all need to find what works for us.. I might look into acupuncture and the patches. I want to take the opportunity to say thank you to all the responses that I have had to my 1st post. You guys have given me a number of options to explore which is fantastic.
Hi Sharon
Welcome.
I don’t have much to offer that the others haven’t already.
My personal experience is that Ihad terrible difficulty getting someone to tell me what I could do with my spinal mets. I am a Physio and couldn’t even use the elastic resistance band with patients when first diagnosed. I was on morphine to get through the night.
For me the Ibrance and Letrozole with Denosumab injections has got rid of that ouch pain. I also bought an ebike because I was breathless. I, like Sophie find that exercise really helps my pain. It’s really finding what suits you.
Avoid twisting movements of the back, and don’t lift more than 20 lbs. I got that advice from Sandra on here, because I couldn’t get a straight answer from my Onc, the Specialist Physio, the Occupational Health Dr, or Google!!
Hope you find something that helps, alongside the treatment
Hi Claire. Thanks for your reply. I feel that I have been a bit on my own trying to understand what my spine constraints are. My physios have been a bit non committal and I can understand that. I decided to treat my spine as if I have a spine injury, so no sudden twists etc. and discovered that if I am careful, I can do most things, eve if it is in slow mo. Pilates sounds good and it does sound like exercise is the common theme to help with pain although it almost feels like it is counter intuitive. Do you go to a pilates class, have one to one or practice at home?
I know what you mean Sharon. I spent the first 2 months trying to get answers.
I have done Pilates for years. I had surgery 2 years ago for a disc problem and I got a Pilates for back pain dvd that I did every morning before work, but I find I haven’t started it back up since my diagnosis. I wasn’t able to lie on my back at first, and I still find it painful on the floor. Pilates is great for your core strength, which protects your back. Yoga is very similar but involves more stretches. It depends what your body likes.
You will find you will be able to read your body, and know how much you can do.
Yoga helps me as well....even if I go to a class and I’ve had a bad pain day...once I start the breathing and stretches the pain lessens immensely...mind power is amazing
I have spasms in my intestines so bad that I needed to go home and lay down on a heating pad.
Opioids made me loony and not able to have coherent conversations.
On lorazepam I couldn’t finish a sentence and remember words.
Last week I went on Donnatal for the spasms in my intestines and up my back and down my legs. It works. No pain. OMG! It’s so wonderful not to be in pain.
I still need Tylenol and Advil for my hemorrhoid pain.
A bit about Ibrance: it should not be in hot weather. The inside of the delivery trucks get up to 150 degrees. I have it shipped with ice in a cooler and I have to ask each time. I had one bottle replaced because of heat.
Faslodex did not work for me.
I am on letrozole which is a generic. It is manufactured in India and in Israel by Teva pharmaceuticals. Generics have up to 20% fillers or a different delivery system. Insist on getting the Teva brand.
There have been reports on TV of Xanax coming from India that contains carcinogens. Not what we need.
Let’s make sure our medications are pure.
Today I spoke to two classes at the University about being an entrepreneur. I could not have done that without my new medication.
I have new energy. Yea.
I am going to a restorative yoga class tonight. Smile.
So pleased you’ve perked up...opioids are the devil...I’ve cut mine down to as low as possible so now I’m waking up at night as not sedated by them...zombie days hopefully can stop for a while
I actually smashed my car when I was on the strong stuff...oxycodone...fortunately I only hit a farm gate at the stables but it sort of scared me as my reaction time was a bit slower!!!
My memory was awful too...I love sudoku puzzles and crosswords but really struggled to concentrate...that’s no way to live...if I ride my horse I’ll up the dose but if I’m not being active I’ll reduce...I basically mess about with them to suit me
Sounds like you are going great guns Reenie. The intestinal pains sound absolutely awful. So glad you don’t have those anymore and can get on with life.
I am on a long acting opiate called Xtampza. It has been a gift from heaven! Regular Percocet tends to make me sick too. This long acting stuff does not and it keeps my pain livable to nil. Also nice in that one takes it every 12 hours as opposed to every 4 hours so you don’t spend the day trying to keep the pain in control which is what I always felt like I was doing on every 4 hr drugs. The long acting doesn’t give you the buzzed feeling or make me want to sleep all day either.
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but really keen to get my ducks in a row before I go to the states in 2 months time. Hubby and I are going for 5 weeks so I want ensure I have a backup plan. Sounds like you are doing well and thanks for your tips. 
First line of treatment 
What happens after NED?
NED after 5 months on Ibrance and Letrozole
Stunned, scared, sad, but grateful and happy to be here! 
