What's new with Kath

primekprimek Broken HillMember Posts: 4,957
Warning...long post ahead with much whinging

I've been struggling the past 6 months.
I have developed bilateral bursitis of both shoulders...for no apparent reason.
Initially it was tight with restricted movement and occasional pain in certain positions. No problem...a steroid injection will fix it.
But it didn't.
Within a month I had less movement and pain so bad I couldn't sleep as I couldn't lie on my shoulders. I would wake up every 20 minutes in agony.
I felt unwell. Chronically fatigued and struggling to do my job. If I didn't go to the pool and do some water arm exercises I could barely move at all.
Terrified of metasteses I discussed this with my GP. Blood tests done showed only a raised ESR. (Inflammation)
He couldn't order anything under medicare but another ultrasound which again showed bursisits. I wanted a MRI.
Recommended I see my oncologist. Too busy they said in February.
Contacted the breast surgeon...nope GP can deal with this. Breast care nurse here had no pull. Breast care nurse in Adelaide suggested I try no letrozole and see. My head goes...too scared to try this in case it is metasteses and it grows quicker.
So by March I'm seeing a rheumatologist. He listened. He was worried it is an inflammatory response. He sends me for a bone scan and an MRI (300k away) to exclude anything more sinister and was angry it hadn't been done already.
His verdict is possible polymyalgia rheumatica...which means inflammation of several joints...no known reason.
So meanwhile I had 3 cancelled oncology appointments despite talking to cancer care coordinator about the issues and my last visit to breast surgeon (in Setember) was just suture removal not a bloody review...and they'd cancelled my January appointment as I'd seen him. Uuugh.
So I get a call 2 weeks ago...we've made you a face to face appointment with the oncologist. The time was changed 3 times that week.
So I see him last Monday.
He listened. I cried.  I told about my ongoing fatigue. My whole body restricted movement which I was coping with up until the bloody shoulders. My general feeling of being not right and my genuine fear I had metasteses but...bone scan was ok (thank goodness)
So he wanted me on painkillers. ..which concerned me as panadol makes me tired. Quality of life he says. Then drops the bombshell...since you'll be on AI another 7 years..what?..all along they've kept saying 5 as no nodes...but now saying emerging results still recommend I do 10. My coping...was knowing I've only had 2 more years...but bloody 7. So More tears.
I then explained how much restrictions /pain /stiffness I had. No...I didn't whinge much before (always said its doable and was better than initially) but with the shoulder issue it's now just too much. His physical exam was much more intense than before including liver and abdo area...I'm sure I haven't had this before.
Sooo...I'm on a letrozole break to figure out whats drug related, whats age related or just bursisits. 3 days free and I can stand up from bed and walk normally. I can step down a step. My hands can rotate.  Bloody marvellous.
The plan now is too see what else improves and try a different AI.

So even prior the break...I am sleeping better.
My shoulder pain is less after resting since March any upper body exercise other than controlled stuff set by physio. I'm not feeling quite as fatigued. I really wonder if I do have another bloody autoimmune thing happening. 

Anyways...life goes on. Kath x
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Comments

  • Blossom1961Blossom1961 VicMember Posts: 1,106
    Hi Kath, I hate the side effects of the drugs which are supposed to give us our life back. I have avoided all the hormone drugs as I was hormone -ve but I really feel for those on them. Surely part of the research money raised should go toward improving quality of life. Whinge away, you deserve to. Big hugs.
  • youngdogmumyoungdogmum Gold Coast Member Posts: 168
    I am so sorry you've been through such a shitty time but am relieved you got to see the Rheumatologist, got a bone scan (amazing it was clear)
    Im also really glad your surgeon did a full abdominal exam.
    Take care, you're a great support in this community, particularly to me I always enjoy reading your replies. 
  • arpiearpie Mid North Coast, NSWMember Posts: 2,769
    @primek - so sorry to hear of your traumatic time!  

    They just don't 'get it', do they?  They have no idea just how distressing it is to be going thru all that, let alone with the thought of Mets in the background - and then to have your appointments mucked around like that as well!  (Ask @Annie C about that!)

    Glad that your bone scan etc is clear.

    I've had stuffed shoulders before BC - one was frozen shoulder & the other Rotator Cuff with extras.  Both of which severely impacts sleeping as it is so painful.   I hope it isn't an auto immune thing!

    I've only ever had bursitis from actual injuries (on an X-ray it shows as a white blob of liquid at the joint that was injured) .... and usually in my hip - the bursitis sac usually absorb over time, with pain killers/anti inflams in the mean time to control it.  If big enough & caught early enough, they can be drained/sucked out by needle.

    I hear you re the side effects of Letrozole.  I only lasted 6 weeks on it.  Then 6 months on Exemestane and I've just started on Anastrozole a few days ago.  Will see how that goes.  

    Enjoy your break & good luck with the next AI   xx

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,492
    @primek
    The tyranny of distance doesn't help!
    Process of elimination after a lot of persistence has at least eliminated mets.
    What's highlighted here is your location seems difficult for regular appointments. 
    I was on Letrozole for 6 months and Onc could see I was struggling from the start but he asked me to persist with time to see if it settled.  No it didn't and he changed me to Aromasin, my third AI.
    When I first met my Breast Surgeon, Mammogram ultrasound and straight to surgeon, he delivered my diagnosis and the comment that you will be my patient for the next 10 years.  Fortunately hubby was with me as I stalled on the 10 year bit and missed the next sentence or two as I kept thinking what did you say 10 years!  I have 6 years to go.
    It's a hard road that we all travel!
    Hope that you get some peace whilst on the break from Letrozole and that your next appointment sorts out where you are at, bursitis is treated and some sense of I am back on an even keel here and I don't hurt like I did!  Believe me I know what that's about!

    Take care and whinge away
  • ArtferretArtferret MelbourneMember Posts: 210
    @primek ; "...which means inflammation of the joints...no known reason..."
    When you wrote that Kath, my immediate thought was letrozole. Don't you just love it when they state no known reason...we all know what the cause is, it's just that not many of the medical fraternity are prepared to listen and take it on board. A little acknowledgement goes a long way. I know i had a stuffed right shoulder before bc but last week it was unbearable across my whole shoulder neck jawline area. Fortunately my body responds to what my osteo does...most times and luckily this time it did.
    I'm so glad your bone scan was clear, it would freak me out if i had to have one of those. I go on a 2 month letrozole holiday in...19 days and counting. My osteo said to me regarding my right hand that the only way i would get any more mobility in it would be for someone to massage it twice a day... we both looked at each other and said well that's not going to happen! Except I've started to give it a light massage twice daily, once with voltaren gel and the other with moisturizer. It has worked up to a point but not beyond.
    Good to hear that you are more mobile whilst not on letrozole. Anastrozole will be my next go to, just haven't decided yet.
    Enjoy your break,  i know i will! Cathxx
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,765
    edited May 12
    Shitbags Kath. This stuff is so stressful.
    I found letrazole unbearable; I ached in places I didn't even know had nerves until I started taking that drug. I persisted with it for 12 months then changed to Anastrazole. No different.

    Aromosin seems a little kinder to my body but was not my oncologist's first choice. I figure it's better than nothing but, of course, I feel like I've compromised my treatment. And I've put on 6 kgs. Which is probably the least of my problems unless it's the biggest problem as my BMI is now not user friendly.

    It's so hard when you are paddling like all fuck to keep your fitness, job, sanity and relationships above water and there seems to be a total lack of understanding from the medical fraternity about the side effects of AI and how that screws with our heads and bodies.
    Keep going. You are a remarkable individual.
  • lgray3911lgray3911 Member Posts: 206
    So shit!! The drugs that are supposed to be helping to keep us well cripple us! It’s fucked! Hope they can find a better option for you xx
  • SisterSister Adelaide Hills, SAMember Posts: 4,069
    Oh, Kath...I knew you had shoulder pain but I didn't realise how bad it had become or how difficult it was being to get some answers.  I'm so glad that you have had an MRI now because at least you can rule that out.  It sounds like your rheumatologist is on the ball.  Is he in Adelaide or down your way? 

    I'm currently waiting to see if treatment has triggered an auto-immune response, as well, just to cover all bases.  Onc told me a couple of weeks ago that the severity of my joint pain was making the Letrozole unsustainable and put me on a week of prednisolone which worked like someone had waved a magic wand.  I guess it's only a short term fix, though and it will come back.  Has prednisolone been suggested to you?  I gather it's a step up from painkillers. The onc's immediate response to my answers to his questions about the joints was that it was inflammation almost certainly caused by the Letrozole - so it's obviously well known that it can have such a detrimental effect.  (He also didn't argue when I said that I'm sure you guys say 5 years on it because 10 would be too overwhelming.)  I completely understand your fear of going off it even though it's causing so much pain.  I'm not even keen to switch to Tamoxifen as it had no impact on my sister's cancer (I know the circumstances and timing were different but I just can't get my head around that).

    I hope that now you have someone listening to you, you get the quality treatment you deserve.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,276
    Letrozole attacked my feet and I was getting to the stage I couldn't walk so I went off it and rang oncology for an appointment way back in Feb. Still waiting.

  • DeanneDeanne Sunshine Coast QldMember Posts: 2,088
    edited May 12
    Hi Kath,
    So sorry to hear that you have been having so much trouble and so many difficulties getting checked properly! 

    I also started having lots of issues around the 3 year mark with Letrozole. Knee issues and then hand, finger and thumb. I honestly did not think it was Letrozole because it took so long to happen but my oncologist had no hesitation in immediately taking me off it. As soon as I saw her and showed her my list of new symptoms she acted by giving me a month off and changing drugs.

    I am now feeling so fortunate to have a much, much better quality of life. I also think I had some depression on Letrozole. I feel so much less sad and angry, I have energy again. Even I like being around me more now!

    My oncologist made the decision, stating ‘I think this is best for you’. No treatment comes with a 100% guarantee. These are hard choices we have to make.

    Hope that you can find the best way forward for you. Take care. xxx
  • arpiearpie Mid North Coast, NSWMember Posts: 2,769
    Out of interest, @Deanne - what was the next tablet your Onc put you on after Letrozole?  When did you start it.

    I really think that female Oncs seem to be more sympathetic to the side effects pain/lack of quality of life than the male Oncs. 

    all the best xx
  • DeanneDeanne Sunshine Coast QldMember Posts: 2,088
    edited May 12
    I am back on Tamoxifen @arpie , which I was on for 2 years before my 3 years and 3 months of Letrozole. I’ve now been back on Tamoxifen for just over 2 months after having the month break from everything to let my body recover a bit. 4 years and a bit to go to get to 10 years of anti-hormone therapy all up. My GP was supportive of the change and happy to hear how much better I feel on Tamoxifen. She remarked that in her experience this is a common change.
  • kmakmkmakm MelbourneMember Posts: 7,185
    Oh Kath, you poor thing! You're having such a rotten time on all fronts. You definitely  get to have a big whinge.

    I'm really pleased for you that the mets beast was laid to rest. Good on your rheumatologist for taking your worries seriously.

    I wish I had something helpful to say, but I'm battling through Letrozole as well. Currently trying acupuncture.

    I did have a reduction in hand and thumb pain after having a month off it. I hope you get a similar effect.

    Big hug Kath. You're very brave. Keep at it and enjoy your drug holiday. K xox
  • primekprimek Broken HillMember Posts: 4,957
    @sister the rheumstologist is from Sydney but visits often. We were considering prednisolone but I stack on the weight with it so we are trying conservative treatment presently. I've had it before after a weird thing with my arms years ago which was an entrapment syndrome caused by my heavy boobs...one issue I don't have now.

    They are still considering just trying a different AI presently if things improve off letrozole. Which dramatically they have. Even my stiff neck issues seems to have improved. And I'm forever just rotating my hands and feet as it feels wonderful to be able to do that. This morning I could stretch my arms out. I haven't been able to do now for months. It's still tight but it's definitely better.
  • SisterSister Adelaide Hills, SAMember Posts: 4,069
    It's quite eye-opening... I knew I was slow and stuff and in pain but I didn't realise just how much it was affecting my life until the pain was gone.  One tablet and 6 hours was all it took to change my world.
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