Starting/declining hormone therapy Nov, Dec, Jan 2018
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Spoonie cuddle your puppy, eat your chocolate, no more googling tonight and watch a good movie. The rock in jumanji was great Home again with Reese Witherspoon is really good Crazy Rich Asians (if you haven't see these) Also Jack Ryan series (I binged this one). Try to get out of your head time for a little fantasy cause at the moment reality kinda sucks. Love your puppy. Wishing you a peaceful sleep even if it is in front of the teli.
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Your pup is freaking cute!
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Spoonie, I guess you have to see an endocrinologist oncologist. Your breast cancer oncologist might not be the right person. On the other hand, the fact that they are not worried is very uplifting, right?
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Spoonie,
That's awful how the providers are basically ignoring your concerns. Please take an advocate with you (friend, family member, neighbor etc.) to your upcoming appointment. It helps to have someone else there, anyone else, which puts pressure on the doctors to address your concerns and follow up on the results of the tests. I hope you can find someone to take with you.
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Spoonie, I am so sorry you have been treated so poorly. I don't care how busy the doctors/nurses are, someone should have called you. Even if they are not concerned they should call to tell you that and offer some support.
Feeling frightened and alone is an awful part of cancer and your caregivers should know that and be responsive. I am sending caring and hopeful thoughts, but wish I could do more. Take Care.
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InnaB - I wish I could say that their lack of concern inspired me and gave me hope that there is nothing to worry about. Quite the opposite in fact. I guess this comes from the fact that I've spent 25 years in medical circles due to all my other dxs. Drs do not inspire my confidence. I do not trust them. They have misdxd me many times over the years and passed me on to someone else because they didn't want to deal with my complex medical issues. This is what it felt like for me in the past, I just didn't think I'd feel this way in the cancer world but welp here it is.
Thank you all for the kind words and support. I feel rather defeated but am hoping tomorrow Dr. H will at least be able to rule out spreading of my Breast LE to my neck as a cause of my neck and lymph swelling. I know she will give me some answers if she can and will be supportive in doing so. It's sad that the first doctor I will talk to about my previous scans last week will be my Cancer Rehab doc. Three other drs, including my PCP, my MO, and my SO have avoided me like the plague since the scans. It's an awful feeling.
I will try to be on when I can. Don't feel much like talking or doing much other than trying to stay distracted and fight to get someone to listen to me. I know that will cost lots of spoons. I really wish there was an easier way for me. Keep me in your thoughts yall and I'll keep you in my pockets. Lotsa love.
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Spoonie, we understand when your spoons are running low, please don't feel like you have to be posting for us to feel your presence and send you support. We are here for you, hugging and listening to you when you need solace, and flipping those who have wronged you the bird.
Oh, and if you have Hulu, the series Harlots is fun. Isn't OITNB starting their last season?
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Wised is right, Spoonie. We are with you regardless of whether you’re posting a lot, or just lurking, or even take a break from the boards for a while. I’m hoping Dr H can provide an explanation that brings you the answers you seek, along with some piece of mind. Love and hugs coming your way......
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Spoonie- if you are reading along....still thinking about you! Sending good calming vibes!
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thinking of you Spoonie and wishing you only good things.
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Hugs dear Spoonie!
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Domino and Tucker continue to keep you in their paw thoughts too!
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PebblesV your pups are freakin adorable and sure to bring a smile to anyone's face.
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both so adorable- the black one is domino!?
i want him!!!
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Thx ladies! The black one is Tucker, our boy, and the white one with the black patch is Domino, our girl. And we had a little all black one Kit Kat, our girl, who crossed the rainbow bridge last year, just before I got diagnosed with bc. It was quite the year last year.
Here is the pic from my profile of all 3 together, a bit bigger so you can see!
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Spoonie:
They don't do PET/CTs regularly because the high level of radiation and the risk of getting cancer from that. Estimates vary a lot but one study estimates the risk of getting cancer from a PET/CT in the U.S. to be 1 in 100
If they were to do them standard, then they would cause more cancer than they cured so they often only do them if they think the cancer has spread or they know it has and they are trying to monitor it.
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Has anyone heard from Spoonie. Been thinking of her and hope she is doing OK.
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Nothing. I'm a little worried that she's not in a good place
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Spoonie I am thinking of you too and praying like mad that everything is okay.
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Spoonie, we are all here for you. PM me if you want to talk.
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same here Spoonie, thinking of you 💙💙
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I'm worried too. Thinking of you dear Spoonie!
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I emailed Spoonie and haven’t heard back, usually I hear back. Maybe she is just taking a break from the boards like I did. Thinking the best and Spoonie if you’re seeing this we’re all thinking of you!
Domino is looking a little worried...
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Thinking of you, Spoonie, and sending virtual wine and chocolate.
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Don't have many spoons but wanted to pop in and say thanks tremendously for the hugs, love, and uber support.
It has been nothing short of a SHEET show over here and I want to lose my mind.
Nothing has been determined OTHER THAN the fact that I am freaking allergic (not proven, just a theory of my PCP based on results from taking rxd Prednisone) to Zoladex. Arrived at my MO's office for an appt, they looked at me and said "You need to see your primary for this. We can't help with whatever is going on. You ARE NOT having an allergic reaction to Zoladex. It just doesn't happen." And get this, they still had the gall to ask me, "So would you like your second injection today while you are here?" Uhhhhhh no freakin way. Ugggh.
So though it rarely happens, it happened to me. I am the minority, I am the odd ball, I get all the weird stuff and I cannot tell you how devastated I was yet again to be turned away while looking like this (see neck below) and not treated. My other symptoms were unexplained fever, nausea, red pustular rash, itching, swelling of throat/neck....even with showing all of this (documented in picts) to my MO, they did nothing because they said it never happens.
Yeah, well, it happened to me. I am the minority, I am the odd ball, I get all the weird stuff and I cannot tell you how devastated I was yet again to be turned away while looking like this (see neck below) and not treated.
My PCP got me in later that day, was talking of putting me in the hospital due to the reaction, but I pleaded to stay home and try her rx of Pred first, along with mega doses of Claritin (2 tabs 3 x day) to see if it would calm the storm. It did. Within 48 hours my neck was back to my normal.
A side by side is just crazy to me....and yet my MO and her nurse both said nothing they could do for me. Feel insulted to say the least.
Here is the timeline of my onset of symptoms if anyone is interested. This is why we have to be our own detectives. Seriously.
* According to FDA, "Goserelin (Zoladex) is released from the depot at a much slower
rate initially for the first 8 days, and then there is more rapid and continuous release for
the remainder of the 28-day dosing period." and also "[chart] Time to peak concentration
(days) FEMALE: 8-22 Days". (This is shown by the green and the orange vertical sections on my timeline)
https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/019726s054,020578s032lbl.pdf
Have been refferred to Immunology (for the Zoladex reaction) and Endocrinology (for thyroid nodule).
More hoops and red tape and unfortunately more waiting.
Found out the nipple pain I've been experiencing for the past month is due to new cording and lymphedema under my nipple that developed and presented after the Zoladex injection caused swelling and inflammation in my body.
The story continues. It is a battle every day but I am battling. Will be back as a I can. Nothing to spare and when I'm not filling out forms, seeing drs, or making phone calls, I am sleeping. Oh, and I had 35 hot flashes yesterday. Uggggh. Cannot wait till my hormones are back to normal. It's pure insanity on top of insanity.
Hoping you all are having better days than I am. Hugs and healing to you all my friends.
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Oh my GOSH. I'm steaming mad on your behalf. Conserve your spoons, know we're here when you need a pick you up. Much love from Kansas.
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Spoonie! Oh my gosh you've been through so much but I am glad you are getting better. Thank goodness you are an intelligent advocate for yourself. I hope they get this figured out and no more zoladex for you! Hugs sweet spoons. 🥄
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Spoonie - so glad you checked in and with everything going on I am sure you are exhausted. Drs. are annoying when they won't believe an allergic reaction (I actually had one to an antihistamine) I am so so sorry you had to go through this exhausting nightmare of worry and waiting. Glad the nipple problems were not a new BC but really sorry about the cording and lymphedema. It is so hard when life is just an endless sea of medical crap. I hope things improve greatly and quickly for you. Can you get a cooling cloth for your neck (now the swelling has gone down). It is awesome to calm the sensations of the hot flashes. (I used one for hot yoga and barely noticed the boiling room. The guy beside me was sweating so much it was dripping in a river from his toes yuck).
You will win your battles and then perhaps write a book entitled "My life as a Spoon". You will be healthy and famous. Sending Hugs and strength to you.
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Spoonie, I repeat my earlier offer to call your MO’s office to yell at them in your behalf. Just shaking my head.... It sounds like your PCP is on top of things. I hope the immunologist and endocrinologist are good additions to Team Spoonie. I’m grateful that you used one of your limited spoons to update us. Check in with us when you can; we are in your pocket no matter what. Sending love and hugs!!
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Hi Spoonie,
So glad your PCP figured out the problem and got it resolved. Good you declined the next Zoladex injection. I hope you keep feeling better.
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