I would like to thank all of you who wished me well with my surgery a couple of weeks ago. I was humbled by the sheer number of you sending me such caring, encouraging messages. What a gift to receive just prior to my surgery!
My surgery went well and the healing is much less painful than my dislocated shoulder was a couple of months ago, haha. I had my 2 week post op appointment with the surgeon Friday and she had the biopsy report...sooner than she had been expecting. The news was not great, although I was expecting it, since I had had the lump for more than 2 years (had been told it was a cyst and nothing to worry about!) She removed 5 lymph nodes and they were all full of cancer, so I will need further tests to see if it has spread anywhere else. And then she will go back in to remove the rest of the lymph nodes. I'll be meeting with an oncologist and will need chemo for sure and probably radiation. Of course my greatest fear is that it has spread during all this time, however there's nothing I can do about that, I must just deal with whatever cards I'm dealt.
Following the advice from this site, particularly from Mrs Nails, who had extremely relevant direct experience, I went up to 10 mg (from almost the end of a taper from 4 1/2 to 4 mg) for 10 days after surgery and then dropped to 4 1/2 mg again with no problems.
During the diagnostic MRI they accidentally discovered that I had a fairly large ascending aortic aneurism. I've read that aneurisms can sometimes be caused by GCA and less often by PMR. I only have PMR...I'm wondering if anyone else has had an aneurism while having PMR and if so, if it has ever been blamed on the PMR? I'd like to know if that can be a cause before I talk to my GP. Should I start a new post with that question??
Thanks again for all of you caring, generous people, and the help you share!!
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Babysingstheblues
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Sorry to hear about the results. I had a similar situation when I was told my lump was fine only to be told a year later it was cancer and an aggressive one. They whipped out all my lymph nodes and I had chemo before they could operate. It’s still a shock even when you are expecting it so you have my sympathy.
As for the aneurysm, it’s difficult to say really. You may have got it whether you had PMR or not and PMR/GCA don’t necessarily affect one set of blood vessels only and stay there. It seems to be on more of a continuum and other large vessels can be inflamed with symptoms that can be silent. .
All I can say to you is that I so admire the way you are handling all the 'shit' that is happening to you right now. I send you all my heartfelt wishes that your recovery is manageable and not too restricting, and if anybody can overcome all this I am convinced you can. Sending love and hugs. Anne. x
I have an ascending aortic aneurysm diagnosed through PET-CT and axillary ultrasound. I am asymptomatic. I've had to dig deep to inform myself and the most informative and easiest to comprehend article I've come across is this from the Vasculitis Foundation:
It all comes as a bit of a shock, doesn't it? The latest information from a new consultant is that aortic aneurysm is part of the spectrum for PMR/GCA/LVV and my follow-up letter after diagnosis in 2020 states, "PMR evolving into large vessel GCA."
I was strongly advised to begin Leflunomide (10mg daily) which I did reluctantly and to date have had no noticeable side effects. The PET-CT was repeated just last week to enable clearer vision of the aortic root. I will post when I've received the results. Mostly, I've tried to stay positive but the pandemic has caused me to be extra cautious regarding mixing with people I don't normally meet up with and avoiding crowded places. I made a note of an article from 'Medicine Plus' (but don't have the actual link) which states that LVV and aneurysm is, "...associated with rheumatological diseases..").
You clearly maintain a great deal of fortitude and you have my utmost respect. Your attitude towards dealing with things as they come is all we can do and as far as the aneurysm is concerned please ask what the plan is for you and how you will be monitored. I've had to be a bit 'pushy' but know now that this has been to my advantage.
That is such a comprehensive and helpful reply, 123-go. Just wanted to add that and, of course, my very best wishes go to Babysingstheblues. I so admire the way you are dealing with all that's happening right now. Do let us know how you get on.
No advice but just wanted to assure you of prayers as you traverse this journey with its unexpected twists and turns. You have coped so well thus far and you only have to take one step, one day at a time. Please keep us informed how you get on. More gentle hugs!!xx💐
Big Hugs, much love & positive thoughts, l’m away at the moment & talk about intermittent WiFi 🤦🏻
I’ll message you when l get back (Wednesday) but you sound like you have a good, positive mental attitude which will stand you in good stead, we’re the ones who do well……
I’ll just send this as a PM too, so l can find you easily when l get back!
I have been thinking of you since I read your post this morning. I was diagnosed with breast cancer for the second time a few years ago. Mastectomy and chemo followed. It’s a tough time. I remember walking into the chemo department and feeling as though I was on a different planet. But you adapt and find strength and learn about true friendships and caring relatives. I wish you strength but don’t worry if you hear people say ‘you’ve got to fight it’. Just be kind to yourself. Whatever you feel is ok. I hope all goes well
Thinking of you Babysingstheblues. I have had bilateral mastectomy and recovered quite well through it all. Never give up hope for a full recovery, you sound wonderfully positive and that truly helps. Stay in touch, sending you loads of love ❤️
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Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
Is it PMR pain if only right side
hallo
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