Hormone therapy and tendon issues

This thread is raising my blood pressure. It is infuriating that SO many are dismissed. Positively blood boiling. Women's pain, condescension, hubris... GARGH

@Blossom1961 interestingly my onc puts my bone pain down to the herceptin not the arimidex but it only started after I started the arimidex. I think I only have 4 to go so will suck it up and hope that it is the herceptin and it goes away once I finish! At last that is what I’m praying for

I’m somewhat dismayed by the reaction of the medical community above -  makes me feel like a guinea pig in a drug trial I hadn’t agreed to .I am further dismayed as I share the same oncologist as some above however he did authorise an MRI / ct scan at the outset albeit none since for comparison.I too will raise this with the medical people but am also scared to come off it.

Meanwhile I wear a supportive band just below the elbow daily to support the tendon which helps and keeping on doing stretching exercises recommended by my physio.( there are lots online btw)It is still difficult opening doors and dressing esp putting on Sox as well as  many other daily activities  especially as the day wears on. I am also consciously trying to use my other arm which has not been effected for daily tasks more .

I thought I was travelling ok on Letrozole but when I think about it maybe not - severe vaginal atrophy making Pap smears very difficult , 3 major eye ops last year for Glaucoma and now tennis elbow.The latter two are inconclusive but am suspicious .

I get some challenging side effects from Herceptin. It is only 10% of people who have these reactions. However my Onco said it couldn’t possibly happen, even after my GP and Osteopath proved Herceptin was the likely culprit. Last time I visited the Onco she asked me how the pain was and how many treatments I still had to go. When I told her ten down, seven to go, she then told me I could stop having the treatment as I was over half way and past trials showed this should be enough. She admitted Herceptin could cause the various side effects I was having. They basically lie to you because they don’t want you to stop treatment and don’t know how to stop the side effects.
Remember, doctors have to rely on the clinical trials, blah blah blah so lying is their best option to keep you going on it. Frustrating. I just wanted the truth and acknowledgment.

I agree, @Artferret & @Sister - I truly believe that most health officials just 'switch off' (and yes, get annoyed) as soon as 'side effects' are mentioned (I am pretty sure I saw my original Onc 'roll his eyes' when I mentioned mine!  The meeting only lasted 5 mins!) - as they would be hearing it from most of their patients on AI & Chemo at every appointment.  It would be the main topic of conversation at every appointment, I reckon.

You would assume they would know someone personally who has also gone thru these painful side effects - possibly even family members - yet they continue to disbelieve us.   Maybe we need some sort of online petition requesting that it be investigated as a priority?  I'd be prepared to try that tablet mix that they've put together for the men with Prostate cancer who are on hormone tabs as well (with similar side effects to us) ..... but we weren't invited to be a part of the trial - so we don't know if they would 'work for us'!  They are simple meds already available - nothing 'special or expensive!'

I think that most of us would agree that a CT Scan or MRI should be standard procedure when anyone is diagnosed with cancer - to get an 'as now' picture of the whole body & also see if the cancer has already advanced.  Then there is something to compare it with later, if needed - otherwise they are only guessing.  It will also show any tendon/muscle damage .... it is a no brainer!

I am currently dealing with bilateral bursitis and I have confirmed tendonopathy of my left shoulder by MRI (they only did worse side). I can't lift my arms up above shoulder  height, put them behind my back,  do up a bra, stretch forward at waist height. I suspect it is letrozole related but was too scared to stop to see if there was sudden improvement. At this stage I'm using conservative treatments as I was very worried about sleep issues and weight gain with prednisolone. 

My picture is confused as I have an autoimmune disease already so I'm being seen by a rheumatologist to deal with this and a physio. I don't  have RA or lupus but the jury is out if I have polymyalgia rheumatica.

I have yet to see either breast surgeon or oncologist face to face to talk about the possibility as after contacting them they were both dismissive that it is drug related.

Yep, I'm with you on the still no golf and won't for a while @Harvey1903 particularly when i know there's a lovely little course waiting for me in Mt Beauty 🙁 My elbows give me grief in soreness as well more my left than right. And i agree with your comment @Sister about medicos getting annoyed about patients constantly complaining about the side effects. You would think they would have twigged by now with so many of us talking about what it's doing to our body and then there's the other half who go off it because of the lack of quality of life whilst on it. It is such a blunt instrument. And yes @kmakm an mri would be fabulous at the start just to give a baseline measurement...but as you said...as if...which is why i went off and got an x-ray done on my hands and wrists and what did they find? Nothing out of the ordinary, funny that.
Good luck @Romla. If you find something that effectively alleviates your pain let us know. Cath

We'll that's me - number 4, still no golf and probably won't for a while.  Sorry to those with sleep hygiene issues I don't have that but definitely tiredness during the day, what was I saying, oh yes, forgetfulness. J

I absolutely agree @Zoffiel and @Sister. The people here are a fraction of the number who take it. It's simply not possible that we're the only ones with these AI issues! Such bullshit. No amount of bloody sleep hygiene is going to stop the pain caused tossing and turning. I must be a dirty dirty girl...

Does anyone ever get the feeling that the medicos are so excited about AIs that the persistent buzzing of patients with side effects is an annoyance?

I have stiffness in my joints and in the soft tissue around the long bones - I have no idea whether muscular, tendons or ligaments since taking Letrozole.  I also have a long existing ACL injury to my left knee which I have successfully managed  since it became more of an issue for me about 10 years ago.  All of a sudden, without any incident occurring, it has become painful when I move it.  

And yes, @kmakm I also have elbows that feel constantly bruised and the backs of my hands and wrists are sore.

I had a bath last night and the contortions I had to go into to get in and out were ridiculous - I was actually thinking that the rails they put on the side would be in order... I'm 55 and was quite able before the meds.

I'm not game to discontinue the Letrozole but I do wish there was more acceptance that it doesn't come easily.