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Topic: Tinnitus, blurred vision..other weird symptoms

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 4, 2017 03:57PM

swg wrote:

Right around the time I was diagnosed, I got a UTI. My dr. gave me Bactrim. I switched to Macrobid because it seemed to cause all kinds of problems, including Tinnitus.

Well, the tinnitus has gotten worse. And now my vision is very blurry, and my eyes are very irritated. And I have a weird twitching in my lip, as well as the feeling I'm being poked, from time to time, on various areas of my skin.

Of course now that I have BC I'm paranoid the cancer has spread to my brain or something. UGH.

I don't even know if any of this stuff is related to each other..or related to the cancer.

I haven't seen an oncologist yet and I'm supposed to get my pre-surgery tests-blood, EKG etc. soon so maybe I should just tell the dr who does those tests.

Anyone had any weird symptoms like this that turned out to be related to cancer?

thx

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Nov 27, 2017 11:59AM swg wrote:

More good news--my breast surgeon says her patients routinely get Toradol :)

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Nov 27, 2017 05:07PM KBeee wrote:

Great news

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Nov 28, 2017 07:06AM sas-schatzi wrote:

swg, Good Luck on Surgery today. In your pocket :) YAY you got your MRI and it's normal. YOOHHHOOOOooooo


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Nov 30, 2017 08:50PM swg wrote:

Recovering ok from surgery, and my lymph nodes were clear! Quite relieved :)

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Dec 1, 2017 10:57AM sas-schatzi wrote:

Yay swg. thinking of you. :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 1, 2017 07:31PM KBeee wrote:

Great news! Speedy recovery

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Dec 13, 2017 10:38AM sas-schatzi wrote:

swg How you doing?

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 16, 2017 06:10PM swg wrote:

I'm doing great, thanks for asking.

I've changed my diet and am gradually becoming more physically active.

I should be getting a fill to my TE on Jan 2, and my PS thinks I can get an implant pretty quickly. I'm just moving on with my life.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Dec 17, 2017 07:49PM sas-schatzi wrote:

swg.......long ago memory. Aske PS what his standard "fill" and time distance between fills. I learned that ten days between fill versus aseven day plan was much better for me. We each are different. The key is pain. If the fills are done in to close of a period for the skin to work with stretching, you will have pain.

Even a short time of an extra few days can make a great difference regarding pain

YAYswg----------life forward :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 17, 2017 07:55PM sas-schatzi wrote:

swg ............how's the tinnitus and other head symptoms? Since you had the MRI, I bet the worry is gone----?

At this moment the tinnitus for me is very low, very low. Mercifully low. It's been gangbusters all week. This close to quietness is soooooooooooooooo unusual. Then the next question is why? What did I do? What did I change? Can I reproduce it? Oh Vey.............:)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 18, 2017 09:19PM swg wrote:

I still have the tinnitus. It's maddening.

My neurologist said for me to come back in, after I'm all recovered from surgery.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Dec 20, 2017 03:57AM - edited Dec 20, 2017 05:21AM by sas-schatzi

swg, tinnitus, is an absolute bugger. Not experienced by someone else, they have no clue. My ENT doc when I went to him when it first started said "It's not my fault, I can't fix it, please, don't think about killing me b/c I can't fix it". I thought that odd. Then researched it and within that year a person killed their ENT doc b/c they couldn't fix their tinnitus.

My experience was the first year was the worst. It was a roar. Like an angry ocean. It tamed by the end of a year. The first months were not good. It has never totally gone away. Just changes tone and sound. They're been a few days where it was gone. No clue why.

Now it's calmer than the last time I wrote. No clue why.

Crickets, after a rain. Frogs after a rain. Takes all forms of irritating sounds. PITA in the ear. Except it's in the brain. The sense that it is one sided is related potentially to a tumor on the 7th cranial nerve. Mine misbehaved at first and did just that i.e one sided. But it was ruled out

It is associated with hearing loss, but I was dx'd with hearing loss as a kid of about 10. My tinnitus started after a virus about 20 years ago now. It is also commonly associated with noise trauma. Can also be caused by drugs.

Years ago, had a past work friend develop it. I saw him during a scan. I sent him to my ENT doc and told him what he would say after he evaluated him. Also, told him how it may decrease. We ran into each other a couple of years later an he gave me the biggest hug. He said I gave him hope and the tinnitus did decrease progressively from a roar to a lesser sound. He thought me great. Of course, I was happy, but knew tinnitus is not predictable. But anyone that thinks your great............go with the flow :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 20, 2017 04:19AM - edited Dec 20, 2017 05:18AM by sas-schatzi

swg, this one's going to be kind of fun. I was wakened by music at 8:50 in the morning. I went outside to see who would be playing music that loud and on top of it big band music. Nothing.

I realized ...it was in my head. I threw into the computer keywords "Tinnitus and music". Some responses, not much really. Mostly, the responses said I was hallucinating. Then I came across this docs article that called it "Musical Ear Syndrome"

He spent many years studying the subject. Standard orthodox medicine identified musical sounds as a hallucination. He determined that "it wasn't and it was". What he was hoping to do was change the term hallucination to Musical Ear Syndrome in order to downplay the connection between hallucination dx and peoples reticence about the word hallucination.

When I told my counselor about the scenario. His eyebrows furrowed. I laughed. He said you know what that may mean? I went on to tell him about the doc that was changing it to Musical Ear Syndrome.

This is where it gets fun. The hallucination lasted a flat two hours. Gone at 10:50. Very loud to begin with. It wasn't any music I recognized. Towards the end it drifted into music I did recognize as Glenn Miller's swing music. Lot's of horn's, lordy and I had no control over volume.. Then it just stopped.

About two weeks latter, I switched my music channel to a jazz channel. Rare switch. All of a sudden, I recognized a the song playing. Ran to the TV. Saw the song name and player. Louis Jordan -New Caldonia---searched it. It was from 1945-46. It has a great history, but I couldn't identify anything that was related to me. But who knows.

https://www.youtube.com/watch?v=PR6pHtiNT_k&list=RDPR6pHtiNT_k#t=149

If you listen to it, you can understand why not being able to control the volume was a big deal. The other thing is it was an instrumental, no vocals. Thank God. But it was still very irritating after a few minutes.

I'm and old movie buff. I figured It had been used in a movie. Couldn't trace that. Dead end.

It was different than what folks describe as an ear worm. Way different. Thankfully it never reoccurred

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 20, 2017 05:29AM sas-schatzi wrote:

swg, Tell me when it started and what drugs you are on. Any scenario information. Age, Noise trauma, recently? Hx of hearing deficit?

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 20, 2017 03:57PM swg wrote:

Tinnitus started after I took Bactrim for a UTI, right when I got diagnosed with bc in early Sept.

I was pretty sure it was the Bactrim. Thing is, it hasn't let up and that was ages ago now.

My neurologist, interestingly enough, told me he ALSO suffers from tinnitus. So if he can't cure his own, then I don't have much faith he can help mine..

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Dec 25, 2017 02:55AM sas-schatzi wrote:

swg, Tinnitus, isn't curable. it is. Then it isn't. It's a thing.

Where in the range of noise are you? Think a spectrum of zero to 180

0..........................................................................................180

I was close to 180 when it started. Had it sustained at that level, not sure what I would have done. But it did explain the ENT docs direction.

Right this minute as I'm writing it's very quiet. Soft, very soft crickets............No clue why. If I could reproduce what is happening. I would.

Give me a clue how loud your tinnitus is by using the sound bar from the tV


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Dec 27, 2017 02:20AM sbelizabeth wrote:

My tinnitus started early this year, when I did a hyperbaric treatment with undiagnosed strep throat. I'm positive now that the strep make my throat swollen and the Eustachian tubes unable to equalize the pressure of the treatment.

It's a soft hissing sound, much more noticeable in the evenings, or when I'm tired.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 4, 2018 07:10PM swg wrote:

on a spectrum of 1 to 180, I'd say it's 100. Maybe higher. It's really driving me nuts. My neurologist told me to come back after I was all recovered from surgery. Once my implant exchange is done, in a couple of months, I'm going back to him!

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Jan 4, 2018 07:27PM sas-schatzi wrote:

Sorry ebelizabeth that you have tinnitus too. Dastardly annoying.

swg, generally, nothing will change it, but try a search anyway. There maybe something new. I'm still working on the laser thing. I took a break over the holidays. I've talked to a lot of nice folks. One thing that is reasonably common with tinnitus is that it changes character. AND that over time it MAY become quieter. Dislike that there isn't a better response. There are commercial maskers, but I haven't any real knowledge as to efficacy i.e how much they work. I'm cheap, I like guarantee's something is going to work.

Listening to soft music with ear plugs may help.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jan 11, 2018 02:51PM swg wrote:

Hey sas, hope you had a nice holiday season!

I dunno..I'm trying acupuncture..hoping that might help.ugh

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Jan 11, 2018 10:20PM ShetlandPony wrote:

Someone told me therapeutic yoga helped her. Particular poses to address tinnitus.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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Jan 11, 2018 11:27PM marijen wrote:

I am absolutely positive my tinnitus comes from medication. It gets really really loud but I’ve learned to ignore it. I have no idea why medication such as levothyroxine would bring this on. I’ve had it since the 90s.




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Jan 14, 2018 12:20PM sas-schatzi wrote:

Hi swg Shetlands has a nice suggestion. acupuncture is a possibility. Tinnitus is a buggar. There is no known cure, but many have found different ways to live with it. It's one of those things that if you find something that works for you, do it.

Mari, Levo , really. Bummer

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jan 29, 2018 10:03PM swg wrote:

Yes yes..I think I got this from taking Bactrim!

Thing is, I always avoided taking that med in the past, because I'd read bad things about it. But my dr practically forced me, because he refused to let me take the drug I'd BEEN taking before. And my UTI was only sensitive to those 2 meds..

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Jan 30, 2018 02:42PM sas-schatzi wrote:

Swg, has it changed character any. On scale of 0 to 180 where are you today? Left ear & right ear?

0>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>180

none>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>roaring

>>>>>Right>>>>>>>>>>>>>>>left__________________________________________me today


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jan 30, 2018 02:50PM sas-schatzi wrote:

Super Blue Blood Moon. The first in 150 years. This link has a fairly good explanation. Plus it has a chart where it can be seen in the different times.

https://www.space.com/39208-super-blue-blood-moon-...

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Feb 15, 2018 09:25AM swg wrote:

It never changes. It's always really f'ing high.

I'm just doing my best to ignore it.

I haven't had time to go in to see the neurologist again!

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Feb 15, 2018 11:17PM sas-schatzi wrote:

swg, sosososososo sorry, been there. My first year was awful it was roaring all the time. But it did start to subside. Can't remember sequence. I do however remember what you are feeling. It's necessary to have it ruled out why it's occurring.

Can be a brain tumor, can be a drug affect, can be noise damage, can be after a virus/bacteria assault(mine was).

With us in the cancer community we need to first of all is there a cancer relationship

My tinnitus is from a virus from 1998. So, sucks. But it's tempered now. It changes daily. In these years there have been a few moments of silence. I always try to analyse the silence. Thinking I could do something to reproduce it. Never worked..

Not to be hurtful, but the song "Sounds of Silence'" Takes on special meaning.

Please, check in with the doc's to make sure that there is nothing they can fix or untoward.

If you want to run your drug list on my drug checker we can do this together, signed in at the same time, with both of us on the phone and we can check out all your drugs.

Irony, my tinnitus is the quietest it's been in a week or so..............so nice.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Feb 21, 2018 09:28PM swg wrote:

I'm not on any meds.

I do think it was from taking Bactrim for a UTI before my surgery.

As soon as I can do my implant exchange surgery, I'll go back to my neurologist. He ordered an MRI of my brain before my mastectomy, though, and it was normal.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Feb 23, 2018 08:24PM sas-schatzi wrote:

swg, come join us on Insomniacs. It's a 24/7 hour thread. Lot's of nice folks. We range from just getting started to 4th stage, to many years of being okay. Overall it's a happy place. You can basically dive in and enjoy. Lot's of supportive folks Serious come join us

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".

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