I had my 3rd bone injection a few weeks ago and now I have really bad bone pain. Is this a bad sign? My knees are really hurting today. I’m 7 months in to Letrozole - does that hurt knees? I’m so fed up with all of this.
Has anyone tried the budwig protocol? Cottage cheese and flaxseed oil?
It’s the letrazole !! We have to put up with it I’m afraid
We’re lucky to have these drugs even though side effects are hideous
Barb xx
Seriously there has to be another way!!! I can’t take these drugs anymore they are literally killing me. Is anyone out there trying a natural option?
I agree with Sandra...I hate these drugs as well but we have no choice...they’re keeping us alive
Barb xx
I have metastatic bc and arthritis. The arthritis gives me bone pain. I take pain relief medication for it but only denosumab for the cancer.
Ive had a very good quality of life since my diagnosis of bc in january. Long may it continue.
What’s the plan for all of us when these drugs stop working? I know we don’t like to think of it but I’m sure we’ll all try alternative treatments at that point. Just saying, I don’t mean to be controversial but I’d really like to find someone who is doing something different as I’m just stuck in bed all day x
That’s a question nobody can answer and that’s the reason this disease is so frightening...it’s the not knowing
I try to not think of the future or I would go insane
As you probably have read on my last post I’m going to take off label drugs as well as the drugs my oncologist prescribed...I would never replace the conventional drugs though
Barb xx
That’s okay I’m very fed up with not being able to walk when I’m only 42! This time last year I ran an 8 mile hill race on a boiling hot day. The more I look the more natural cures I find. I’m thinking of trying a German clinic.
Hi Ellie,
Are you having zometa infusions, or something else? That, along with letrozole, can cause bone and joint pain. It seems ironic that treatments which are meant to help with problems with our bones can actually cause bone pain. I had some bone pain from those medications too, but I feel better now. I take Adcal D3, vegan omega 3, and Montmorency cherry capsules that I have been taking since last year. The cherry capsules are good for inflammation. I first came across them when we were looking for natural supplements to help with my husband's gout. He decided to start taking allupurinol instead, but I pursued the natural route and take two cherry capsules each day. I also take Epsom salt baths every day, and that may have helped too.
I wouldn't give up on the letrozole though, especially if it is still working and your oncologist is happy with your progress. I would speak to him/her about supplements and what would be best to take to help with the bone pain. If it is causing you that much discomfort then that needs to be addressed.
Sophie x
Thank you. Your posts are always so kind xxx
You're welcome. I hope you start to see some improvement soon.
Sorry to hear you are having so much pain and way too early in life to be feeling that way. I am 58 yrs on Letrozole, Ibrance and monthly xgeva injections since Dec. 2018. I take an omega supplement along with vitamin c and d. I was taking calcium as well but have temporarily stopped as I recently had a bad few weeks of pain that required me to take pain medication regularly. Since I had just started a new calcium pill just before that few weeks of pain I decided to stop the calcium and it seemed to help. I go to the onc next week and will review with them at that time.
Also I find I hurt alot more on days that I am not able to get out for my twice daily walks. My community has an amazing cancer rehab program that I attend twice weekly. It is run by 2 physiotherapists. It has also made a difference in maintaining strength and flexibility. I find if I can work thru some of the joint aches and pains that the exercise and walking really do help. I do have to push myself some days to get out and exercise. But I really do find the aches and pain to be much worse on days that I don’t move as much.
I wish you all the best and hope you find some relief and comfort soon. All the best🤗❤️
Lisa
Thank you x
FYI, my oncologist informed me lady month that there is now data that says Xgeva monthly versus every three months give the same results. You might want to discuss with your oncologist. She said this was presented at the recent ASCO meeting. There is a paper that shows the same for Zomata but it is first time for Xgeva.
I started on ibrance and faslodex, but on moving back into the nhs last Christmas I had a month on letrazole and my joint pain and bone pain was awful. This was grounds for switching me back to faslodex and the pain went. The Oncologist told me that pain is a common side effect of letrazol. ( I also felt depressed and down which isn’t me and apparently this is also a recognised side effect) so it may be worth discussing with your oncologist.
Before I was diagnosed I had awful leg, knee and hip pain. I’m going to post some before and after pictures when I can find them. Had radiation and with the drugs, I am now back to normal. I also take sour cherry juice every day (when I remember) and that gets rid of the residual pain in my knees. Worth trying.
Please don’t stop taking your prescribed drugs, I appreciate that it’s a very personal decision and if that’s the route you take, I respect it. alternative health approaches might help in the short term, but to be blunt, they won’t keep you alive. I’ve had several friends who took that route so i’ve seem it first hand.
Hi Julie,
Do you drink Montmorency cherry juice? I have been taking the capsules each day for about a year and I am happy with the results.
Sophie
It’s in liquid form and just called sour cherry juice, which I buy from an online health food store. I add a tablespoon to my orange juice in the morning. It makes a big difference to my mobility- if I miss a couple of days I start to get stiff again and struggle with the stairs. I tried just eating cherries but that didn’t make any difference!
Julie
It sounds like it is the same as I take, but just in juice form. I thought about drinking the cherry juice each day, but I preferred the idea of the capsules. I buy mine off Amazon and then the manufacturing company gives me a free coupon on my next bottle. It's pretty handy! It's less than £15 for 90 pills.
Sophie
Hi! I had severe bone pain when switched from Zometa to XGeva...so I asked to be switched back to Zometa and to switched to 3 months vs 6 weeks...the difference in efficacy between 1 and 3 months is less than 1%...and the diffence between Zometa and XGeva is less than 1%....So u have options...that being said neither fight cancer! 😱 And my Herceptin/Perjeta does fight bone mets 😱 So what are we doing here folks 🤷♀️ So that’s why I turned to homeopathies. I started taking Essiac Tea in January and my May scan was clear! 14 bone mets gone! Everyone has a different opinion about it but that’s my story and if u ask I share! Good luck to u! I’ve never tried but have heard of the Budwig Protocol...😀
That was supposed to be Herceptin/Perjeta doesn’t fight cancer
I have the knee problems. I have found that walking everyday helps immensely. Per above, the first line drugs are the easiest on us. Please don't give up on them too quickly.
You're welcome, Sandra. It's funny, but when I first heard about them it wasn't because I was looking for them for myself. This was pre-cancer when my husband was looking into something natural to help with his gout. Unfortunately, gout runs in his family. He grew up in a large hunting family, so meat was very central to his diet when he was growing up. But it isn't so great for gout! After my diagnosis I remembered the cherry capsules and started taking them.
Sophie
Hi Sandra,
Here's a link to one of my posts, which has a picture of the cherry capsules I take. I take two daily, and the serving is 435mg. It is tough finding supplements that are not adulterated in some way. But these are suitable for vegetarians, vegans, and for people who are gluten, wheat and dairy intolerant (or just don't want the addition of anything else!) I hope that helps!
healthunlocked.com/share-me...
Sophie x
You're welcome! By the way, some of my supplements have changed since that post. I have stopped using CBD oil. I think it's absolutely vile. I'm sure I would have a better time licking tree sap!
Sophie x
The improvement was gradual. I work on the 2nd floor of an office block and try not to take the lift. Coming down the stairs was the most difficult, and I found myself coming down sideways holding on to the hand rail. I must have been using the cherry juice for around 4 or 5 weeks when I realised that I was walking down the stairs normally and I have no idea when the change was. At that point my knees were still stiff, but they've gradually improved. If I stop taking the juice the stiffness returns.
This weekend I was on the beach with my camera and hadn't noticed the tide coming in. I had the choice of wading knee deep through the sea, round the rocks carrying my camera equipment or scrambling over the rocks up to the coast path. I scrambled. November 2017 I couldn't lift my leg enough to climb the stairs and last weekend I was scrambling over rocks carrying camera equipment 😊
None of the drugs are easy. I have hives n rashes from faslodex/ibrance/xygeva but...I am in pain in my ribs.. have to plow forward in spite of all this. If natural remedies worked we would not be on this forum. I say that with love tho it may sound harsh.♥️
Sister,and yesssssss warrior I am so sorry you are having joint knee pain, and my heart goes out to you. I know what that feels like when years ago after I had aggressive chemo , which removed the cartilage from my knees. Back then I like you was in severe joint pain, and I just wanted the doctors to give me knee replacements. I was referred to a wonderful Therapy Dr. I made an appointment , and researched, and began to take some natural supplements. Suffice to say I was running full force on the therapy treadmill after 3 months, along with therapy administered light treatment, and Ten's unit treatments. To this day I take 34 supplements daily that were custom researched by me after blood-work was done by my G.P. For my joints I take (Triple advanced ) Glucosamine complex Target brand, Omega 3,6,9 oils Vitacost brand, A combo pill Quercetin& Bromelaine V/C brand, Biocell collagen I&II with Hylauronic Acid also V/C brand, a Calcium/Magnesium & Zinc combo pill V/C brand also, A Rainbow Light women's iron free whole food One a Day, a digestive enzyme for nutrient absorption, and 5000 I.U's of D3 daily. I run doing integral training, and I can do over 500 jumping jacks with no pain or joint problems, as long as I keep taking my joint supplements. When I stopped taking these joint supplements the pain started to creep back in. I don't know what will work for you, or if anything may interfere with your medications. All of these supplements are as per my specific blood type, after I had blood work conducted. I hope this helps you or anyone else on this site who cares to try natural modalities. I pray that there will be a natural modality that will give you peace, and of course joy Amen XoXoXoXoXo
Great post ♥️Thank you
Your welcome my sister/warrior. You must give yourself 30 days for the Glucosamine complex to build up in your system, to do its job. I stared out with the weakest Glucosamine formula, not knowing at the time there was 3 levels of strength. I take 2 capsules per day of the highest strength (Triple advanced, Glucosamine complex) for pain free maintenance. You must make allowances for your specific bodies absorption rate, digestive enzymes, and your weight. You may need to take more, especially for the first 30 days. The other supplements will work much sooner. It was on the 28th day of using the triple advanced Glucosamine complex that I was completely pain free, and doing high impact training exercises. My physical therapist let me see my previous X-rays with a lot of cartilage removed from my knee joint, and then he let me see my X-ray after I finished the Physical therapy. The cartilage had built back on my knee joints at the end of my therapy, and he showed me the cushioning gel that also increased. If I can help it, and God is willing I will never be without my natural supplements from yesssssssssss God's green earth. Pain can be detrimental to anyone's well being, no joke. Can you update me in 30 days. I am waiting to hear an amazing testimony. XoXoXoXo
I was on letrozole for almost 5 years pre mbc and i had terrible bone pain!
I took 12 hour Claritin for bone pain as suggested by a friend of mine that is a breast cancer survivor and it worked! Her Oncologist at MDAnderson recommended it.
MBC inside the bones
Bone pain, trouble walking
Anyone had an increase in bone/joint pain after being on Ibrance and Letrozole for a few years? 
Newbie MBS in bones. Has anyone tried Reishi or Cordyceps? 
