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Topic: Pain and Other Things

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 30, 2015 02:34PM - edited Jan 24, 2018 03:05AM by sas-schatzi

sas-schatzi wrote:

Hi I've been on BCO a long time. Nurse 40 years, lot's of varied nursing experience. If I don't have an answer when someone asks I can find it. Pain is a pretty sore interest. I will also, be consolidating old posts. Easier than rewriting new ones when they're good old ones. I'm a strong believer in Evidence Based Research. Anecdotal information does have it's use, but in the framework of accepted Standards of Care.

Must admit though slowing down, not as prolific as I once was.

As always, I review and revise at will without defining why, unless saying why is intergal to the work. There are folks that can't deal with that and have overtly or covertly criticized me for it. The overt criticism, I see as an opportunity to discuss. The covert "get a life".

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 6, 2018 09:42PM - edited Jan 6, 2018 09:53PM by sas-schatzi

While talking about drugs, I will again make my opinion noted about Tramadol. I consider it a very unsafe drug. My opinion is it should be taken off the market.

Reason is it has a twofold affect, pain receptors and serotonin affect. My concern is the serotonin affect. No other pain reliever affects a synaptic neurotransmitter. Never mess with neurotransmitters unless you intentionally want to do so.

SNRI- selective neurotransmitter reuptake inhibitor

SSRI- Selective serotonin reuptake inhibitor

SSNRI- selective serotonin norepinephephrine inhihibtor

Tramadol messes with serotonin. Messing with serotonin sucks. The cardinal example is ask anyone trying to come off Effexor. Which I also consider one of the worst drugs in the world.

You take a dose of tramadol for pain. An individual dose may mean nothing. But daily doses. Trouble.

It has been moved to a higher drug schedule because it has become a drug of abuse. WHAT does that tell you? But why was it moved? Serotonin effect or pain effect? I frankly, don't know.

But I have taken the drug. If someone needs the story to make a decision, I'll write it

Sucky drug.

Edit: I wanted to add more about how much I disrespect this drug and how dangerous it is, but I will leave it alone for this moment.

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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Apr 25, 2018 09:57PM sas-schatzi wrote:

Found this tonight it's about Proton Pump Inhibitors. Most common is Omperazole--Prilosec. Some info I knew so I was solid she was imparting good info. Other info I didn't. Each section references a source. I didn't know at all that proton pumps existed within cells and the brain. Worth a read.

https://chriskresser.com/the-dangers-of-proton-pum...

I didn't have time to look at other post of her blog, but I want too. I like how she keeps it simple and has the reference for what she states

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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Apr 25, 2018 11:05PM Lita57 wrote:

I've known that proton pump inhibitors were bad for more than a few years now.

Best to stay AWAY from them.


Stage IV De Novo, Occult, Amorphic. New Brain Mets Aug 2017. Now on Gemzar. I've been dragged into an arranged marriage I didn't agree to. Divorce is off the table now that I'm married to Mr. Cancer. Grateful for however many days I have left. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/27/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2- Radiation Therapy 9/6/2017 External: Brain Chemotherapy 10/10/2017 Taxol (paclitaxel)
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Apr 25, 2018 11:06PM Egads007 wrote:

Sas - great article on PPIs. I think they have their place, but only short term. I’m convinced my long term use contributed to an eventual diagnosis of acid reflux & ulcerative colitis. Best advice I can give anyone considering long term use to look for the root cause of the tummy problems first. PPIs simply treat the symptoms of the root cause IMHO

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, 0/2 nodes, ER+/PR- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 25, 2018 11:49PM sas-schatzi wrote:

Egads and Lita I have a post back in this thread someplace. I did a search on them a number of years ago and was dismayed about how dangerous they are as a family group of drugs. What was new info for me with finding Kresser's blog was the cell info and the brain info.

They have their place in the treatment of stomach problems. Particularly, ulcers. I gooooo way back in nursing till the time they used milk therapy which turned out to be the worst possible thing to do. The advent of the H2 blockers revolutionized ulcer care. Then came the proton pump blockers. The days of surgically resecting a portion of the stomach and doing a nerve disruption are a far gone forgotten treatment. Hah, maybe not an absolute, but very close.

It is clearly written in the product inserts of PPI's that they are to be used for short term therapy.

Yes, the root cause is important to find out for sure. Which Kresser refers to carbohydrates, but there may be other food intolerances /sensitivities that wouldn't be considered under usual circumstances. My new PCP in late 2009 encouraged DH and I have blood testing for food things. It was amazing the things on our individual lists.

I had 24 items. Some I knew based on history. One I didn't and ate it several times a week. Chicken. DUH. Chicken??? Pepper, basil. Maybe for fun I'll write the whole list

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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Apr 25, 2018 11:54PM sas-schatzi wrote:

Red zone---Basil, cabbage, celery, lima bean, millet, sole

yellow zone--almond, american cheese, banana, barley, Black pepper, buckwheat, cane sugar, cantaloupe, cashew, chicken, cocoa, coffee, corn, FD&C red #4, hops, msg, pineapple, rye, Salicylic acid(aspirin. nightshade foods like tomato), sesame, spelt, string bean, walnut, yellow squash.

Strange list isn't it

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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Apr 26, 2018 12:31AM - edited Apr 26, 2018 12:36AM by sas-schatzi

DH's list was a few items longer. What we did was change our dinner menu. I forget particulars. But dinner was the culprit. We both needed Pepcid AC a few times a week after the dinner meal. The biggy for me was the avoidance of chicken, multigrain bread, and string beans.

Another memory, I saw the PCP on a regular appointment. I woke up with my gums on the front swollen top front and bottom. I said what do you make of this? She said "What did you eat?" Duh, the evening before I made a fresh fruit plate. It included fresh pineapple. I swigged down the juice from the container. The juice only contacted the front gums. So, sensitivities don't need to cause huge reactions, but what happens in the system when in this example it hits the stomach and has longer contact. Could be dyspepsia, could maybe lead to GI distress like diarrhea. If something isn't a full blown reaction we don't tend to think they are a problem. Just as you said Egads---root cause.

If you look at my list HOPS. DUH, beer. My nickname in college was TwoBeer______(name). I new for years if I had a couple of beers my eyes would get bug eyed and I was much higher than anyone should be on 2 beers. It was a very big joke. But you put together what beers are made of i.e grains, they were a sensitivity nightmare for me. The only grains not on the list are oats and wheat.

The company that did the food testing, I never got around to asking the PCP if they could do environmental. I have a huge mold sensitivity. Enough so, that I can detect mold where no one else can smell it. The best story was I smelled it at work. A surgery center. The second episode long after the first episode, my boss was so convinced of my sensitivity, she brought in a remedial company. Sure enough they found it. Whole building remediation. (lot's of details left out). One room I still smelled mold. The guy came in with his machine and it registered negative. My boss asked me to sniff again. AH_HAH........they went up and it was there. I sensed it and the machine didn't . Has happened many times since. Always joked I could sell my services.

But my sniffer is worthless for most of the wonderful smells unless they are at a very high threshold.

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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Apr 26, 2018 12:59AM CindyNY wrote:

Re Tramadol post - 7/31 I took it for foot surgery that removed some hardware from old bunionectomy. Next morning, after a bad night, I woke in a cold sweat, thought I'd pass out, made it to bathroom and had to lay on the floor for quite some time. Never took any more.

At my LX, first thing I mentioned to the breast surgeon was no tramadol!

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Apr 26, 2018 01:07AM - edited Apr 26, 2018 01:15AM by sas-schatzi

Cindy, sorry you had that experience. They're is a particular strange day after feeling with tramadol. It's a completely different feeling than pain. I've never seen a description in writing as to what we are talking about. In an earlier time, I tried cymbalta for fibro while on AI's----no way, and that came as close to what I'm describing is this day after thing with tramadol.

Cymbalta has a serotonergic affect/effect as tramadol does. But Cymbalta is a direct affect , and is perscribed for that affect. Tramadol perhaps 1 out of ten nurses know about it's serotonin affect. Not faulting them. It's just not well described. For a long time docs were not awaare until the drug became a problem.

Cindy when did I post on that?????

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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Apr 26, 2018 04:19AM - edited Apr 26, 2018 04:22AM by sas-schatzi

Other thing---Falling

Recently, I had another fall. Of course, I am now paranoid b/c I forgot my rule of NEVER STEP INTO A ROOM WITHOUT TURNING ON A LIGHT. I fell over Dini. I went down very hard on the knees. and forward. Only by the grace of God was it not catostrophic (sic), I hit the corner of a concrete wall at the right center orbit nasal bridge. I know only too well a small difference in the fall would have been hugely different in the outcome. So, I have added rules, lights are on in that area and rooms that previously, I would have off.. Even with that I still verify the floor is clear. Dini Lab/pit mix, blends into all dark surfaces. For some unknown reason both dogs lay in pathways.

I've lost count of the falls since 2013 when Dini and Donnie moved in, but most are dog related. I coined a phrase "Dog Fall's". I made all kinds of rules.. Each rule was based on what caused the fall. 1.Never enter a room unless the light is on. 2. Don't get out of bed without turning on a light and never re-enter the room without re-verifying where the dogs are laying.3. Be very careful about the floor when dogs enter, may have wet feet 4. Do not walk in the yard unless great care to test each step. 5. Never turn around abruptly. 6.Never back up without verifying space.. 7. no dogs in the kitchen when cooking. Each one of those rules is related to a dog fall.

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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Sep 10, 2018 01:26AM sas-schatzi wrote:

Other things, Comment on family cancer:

I just believe after being involved in nursing, what will be, will be. They're may be a rhyme--- to the scenario, we can work on the scenario, outcome not so much. 

I traced the cancer gene to my paternal grandmother. I was interested in a bilateral prophy b/c my twin had BC, and multiple other on the paternal side. I was the sixth, another cousin was quickly behind me. Of 21 women, 3 aunts/ 19 first cousins, we are now up to 10/ 21 having BC. Some premenopausal, some postmenopausal. Some double hits for other cancers. Of the male cousins it's been lighter, but they are starting to accumulate. I think the total now is 26(7) of 53 blood relatives have had a primary cancer. 

The common factor was farm exposure to pesticides in the early 1900's. In those times the whole nuclear family of both the maternal side, and then the nuclear family of my dad was heavily exposed to pesticides. In the early days of pesticides, they had no clue about pesticide exposure. . 

Plus, as Irish---celtic,  we since learned we carry the gene for hemochromatosis. That word in general is associated with alcoholism(sic). But it has much more far reaching affects than that. It's associated with cancer. Multiple types. 1:200 people carry the gene(s)

Diverging------just missed a night rocket launch-----chit.--------dogs alerted and I didn't move fast enough. It was way up. The fun is seeing it go from ground up. Then dogs alerted again , have to wait for news stories. 

Anywhooses, We talk about causes, we talk about survival. It's all a crap shoot to a degree. Genetics, drugs, unknown drugs that influence the scenario, unknown drugs that make it better or worse. I could go through much.So many unknown clue's why one us of survives and the other didn't. 

Personally, I will always be curious about my survival from 2009, when the pathology report said "Ploidy 1.79" unfavaorable outcome". SO, what made the difference? No sleuth to figure it out. Was it the rapidness of getting the surgery done. Was there a surgical approach? Was there a drug? Was Toradol used? Was it b/c I took Melatonin? Was it b/c I took a betablocker? Was it b/c I used lot's of wine? Nicotine? Was it timing? Was it praying?...………..why with a path report that said "unfavorable outcome" in 2009,  am I writing this? No clue...……………...I am, however, tired of losing folks... 


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 28, 2018 09:35AM NanfromOntario wrote:

Hi SAS, I have a question for you. I have read many of these posts but there are too many o read them all :). I am a nurse, 1.5 years since dx with BC. for the last 11 months I have suffered with terrible pain on right side, cancer side, from shoulder to groin. Not the whole area at all times at present bc I finally got some control with lyrica. They had decided that I had intercostal neuralgia ( this was after several docs and several tests). Now my onc says I have been misdiagnosed ( which I already suspected) he said IN would be along never root, not all over. He also did not believe it is BC surgery or radiation caused, he has no idea what or why I have this horrible pain. The good news is I have some control with lyrica so there maybe a nerve component although symptoms are not "text book". Having no dx is worse than having the wrong dx. My question is around lyrica. I can tolerate the side effects but it has made me stupid :), I am not on tamoxifen as I could not tolerate it ( trust me it was bad 4 months with no sleep is not good + so many other issues), do you know long term SE of lyrica? Any advice. Again I am so grateful for it I went from an 8/10 ( I cant do this I don't want to live like this) to a 3-4/10 tolerable. I never expect zero pain but would be nice.

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 2, 2018 10:11PM sas-schatzi wrote:

Nan, odd, I came today to talk of another  on another thread…. checking here out of responsibility, and your post is only days old versus months. 

I've read your post several times and I agree with your ONC--MO. Intercostal neuralagia follows the rib it does not cover they entire right side. 

But your complaint is the entire right side, plus getting relief from Lyrica. Hmmmm

Thinking many things, but I need to go retrieve a couple of things and then will ask questions.

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 2, 2018 10:22PM - edited Dec 2, 2018 10:35PM by sas-schatzi

There are 31 pairs of spinal nerves. The follow certain planes. They are called dermatome planes. I will bring a picture back. This is only for completeness as your description of pain on an entire side does not follow the intercostalneuralgia defitinion as a dermatome chart will describe. So this is a step one  Okay this is a chart from the internet of the dermatome planes. Each of the spinal nerves affect a very specific part of the body. A diagnosis of a problem with a dermatome is based on stimulation of that spinal nerve and determination of response.





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 2, 2018 10:33PM sas-schatzi wrote:

Nan, you are not describing a dermatome plane problem. You are describing a right sided problem.

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 2, 2018 11:00PM sas-schatzi wrote:

Now, I play 20 questions. I will put them in sequence. You can put your answer by cut and paste.
1 Where at the top on the right side does the pain start? (identify all parts that hurt)

2. At what body part does it stop?

3. What body parts are affected? (Torso, arm. leg) specifics

4, does it occur at any special time? (sleep, sitting, walking, bending)

5. What makes it worse?

6. What makes it better?

7. drugs that make it better? (you identified Lyrica and drugs tried before that?)

8. Does temperature of room make it better or worse

9. Pain scale (refer to page one). Pain scale pre lyrica and post lyrics

10 Associated symptoms, (fatigue, lassitude(I don't give a crap), lack of interest in daily activities, lack of care of hygiene)

Anything else you can think of. 

The positive it's one sided and they can't figure it out. I know that's and odd statement. BUT medicine always wants to put a name on a problem. What you are saying is they can't find out anything by diagnostics(films) that is wrong. 

SO, they gave you a drug, Docs love giving drugs. Sorry that's a bit snotty. The drug seems to be working. But what is it working AT.

I call it Splatter Diagnostics.  Paintball therapy.  Hit it with a paintball and it might cover the problem.

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 3, 2018 09:47AM sas-schatzi wrote:

Nan a couple more questions. 
What & When were the onset of symptoms.

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Dec 3, 2018 12:22PM - edited Dec 3, 2018 12:28PM by NanfromOntario

Hi Sass, thanks for the reply, you are taking more interest in me and asking me more questions than all 6 of the doctors I have seen. (1. Family doc 2. chiro 3. Med onc 4. Rad onc 5. Thoracic surgeon who did an 8 second assessment and a 1 minute appointment and gave me the IN diagnosis 6. My new family doc since I fired my last one for telling me it is all in my head plus being un-empathetic and likely burnt out.)

I will start here ( this will be a long story):

Nan a couple more questions.
What & When were the onset of symptoms.- The pain started in right upper quadrant on the lower anterior right ribs. Dec 2017. Rads ended Oct 2017, surgery was June 2017. I have all my documentation from cancer center. I complained of a 3 week history of this pain, very uncomfortable, to onc. She examined me and did liver profile, abd US and bone scan:

liver panel - I don't have copies but she states all enzymes were normal.

bonescan - degenerative changes only

US,- what appears to be fatty liver (WTH I am healthy not over weight and good diet)

She went on to say must be muscular go see FD. He did an xray said it was fine and in my head, pain continues and got worse. I demanded more investigations, I have pelvic US and MRI which showed fibroids, enlarge uterus and mild ascites, ovaries could not be seen. I had a CT ( again I demanded it) but my doc put on requisition upper chest pain so they did dome of liver up, my pain was lower ribs. That test showed fibrosis and nodule in my lung likely d/t radiation. I am having repeat CT in 6 months ( so a year from the first). No imaging from dome of liver to uterus.

At that point my pain was now from hip ( top of iliac crest) to mid upper spine. That was when he tried lyrica, it did not work and I stopped it after 3 weeks. I then saw thoracic surgeon ( Breast sx secretary would not return my calls) he said "why are you here you have IN, take lyrica good bye". I googled it and researched it and was perplexed bc I did not really fit the S and S picture nor did I ever have a thoracotomy or shingles. All docs nodded head and agreed. My FD would not even increase lyrica.

New FD she says try higher does, we went to 150mg Bid. Pain lessoned after 3-4 weeks, from "I can take this anymore" 8 to ok this sucks but I can do it 5/10) and I stayed there. I had good days and bad but that was throughout whole ordeal. So now past 3 weeks bad days have been increasing and past week all days have been bad. I don't think the lyrica ever worked it was just the pain waxing and waning. I did not take my morning dose this morning, and will wean off it and see.

1. where at top does it start? top is T2 ish, on the boney prminences of the upper spine 2-3 vertabrea, then behind scapula, Bra stap area on the side very tender to touch have to wear sports bras ( this is new past week) to lower ribs on the side, and front to abd area.

2. At what body part does it stop? iliac crest to groin sometimes making walking difficult.

3. What body parts are affected? (Torso, arm. leg) specifics -only torso, nothing to arm or leg.

4, does it occur at any special time? (sleep, sitting, walking, bending) all, constant dull with intermittent sharp

5. What makes it worse? no rhyme nor reason, but gets worse with movements such as running jumping

6. What makes it better? walking relieves it some

7. drugs that make it better? (you identified Lyrica and drugs tried before that?) have none to try accept OTC, as I said lyrica may or may not have been helping, Tyl with muscle relaxant helps a bit reg not at all, oh I tried CBD before but no effect I could not afford to experiment with dose and frequency.

8. Does temperature of room make it better or worse no not that I have noticed.

9. Pain scale (refer to page one). Pain scale pre lyrica and post lyrics pre and today 8/10. post 4-5/10

10 Associated symptoms, (fatigue, lassitude(I don't give a crap), lack of interest in daily activities, lack of care of hygiene) just during pain, I obsessively thinking about it.

I am convinced they have missed something ( well obviously :)) . This is what I read in Dr. Susan Love's Breast book " Metastasis to the bone is generally diagnosed when the patient is experiencing pain. Sometimes it is hard to know whether the pain is ordinary back pain or other conditions like arthritis. Usually the pain you get with breast cancer in the bones is fairly constant and doesn't improve overtime but it may wax and wane and it may move around. ...Bt pain from cancer is steady and usually persists at night when you are not doing anything. Sometimes however it is more erratic. Oncologist Craig Henderson tells me that he has been 'impressed with how often the cancer pain would decrease substantially or even disappear for weeks or months on end and then reappear without any treatment at all I think bone pain is sometimes overlooked as bone mets because it is not steady'"

Having said that, it sounds like me BUT I have had a bone scan last January - could something have been missed?

Thank you for listening and caring :)


Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 3, 2018 12:45PM NanfromOntario wrote:

Sass I now that I think about it, my pain is worse with sitting and lying, I have to move, stand or pace for a bit. also my spine mid to upper I get sharp pain like right on the bone. Also on days that pain is bad I get very tired and irritable and down.

I also forgot to mention occ cough, burning in right lung ( I said burning to FD and he said "h burning must be nerve here take this lyrica there are no side effects accept a bit dizzy" hahaha) On lyrica I am stoned! cant think straight.

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 3, 2018 05:43PM - edited Dec 3, 2018 05:58PM by sas-schatzi

Nan
1 any nausea, difficulty with food, difficulty with food at specific interval after eating?

2 Does the pain start in the back and go around to the front?

3. Is there any mid line front pain. Does the front pain bore straight through to the back?

4. was the pain immediately present after lumpectomy? How long were you on the table? 

(per your notes pain started dec 2017) What happened 24-48 hours before the onset of the pain in Dec..?

I have some ideas , we may need to do this on the phone, but lets get as many of your thoughts on paper first.

I wouldn't ordinarily put my thoughts up front, but thinking I should.

First thought: quite possibly you may have several things going at once. 

Secondly I don't think the gastrointestinal aspect hasn't been researched completely. That would necessitate a GI doc. with a very strong specialty in doing an ERCP if it is indicated. The common bile duct can be injured and scar tissue format the opening.. An ERCP is the placement of a probe to open it up. In Central Florida there is one doc with the skill to do the procedure. People are sent from all over the state. The reason I mention this is it would be nice to see that doc. But they may only take referrals. Finding out who the recommended doc in your area would be a good thing.

I know you had a liver US. Under usual circumstances that would show up gallstones. But gallbladder sand and sludge does show up well. with your liver studies did they do an amylase and lipase when the pain was severe? very small stones can be ejected from the gall bladder through the common bill duct and block the opening to the pancreas. Terribly painful. Causes a backup of enzymes into the pancreas. The stones can pop out by themselves and you go back to normal. Damage can remain to the pancreas. Not sure if that pain is ongoing painful, but less a cute. 

Ascites. shouldn't be present as you know there are specific reasons for ascites. I want to go back out and look at those.

The fatty liver can be associated with non alcoholic liver disease. Drugs can cause this too. I want to look at whether common bile duct disease can cause ascites. 

Also, it can be associated with alcoholic liver disease

Also, being over weight which you state you are not. 

So reading  list. 1.,Causes of ascites., 2 what s/s's does a diseased or damaged common bile duct present like. 3. what does blockage of ampule of Vater (SIC hopefully the computer will correct) feel like. 

Some random thoughts. 

1.Gall bladder disease, generally, presents pretty straight forward. BUT you have had chemo and radiation. Radiation causes tissue scarring. Tissue scarring causes the tissues to contract down. So if the common bile duct was affected it may not show up right away. 

2. affect of stones on the pancreatic ducts is very painful, the absolute definitive diagnostic test is a Amylase (particularly), and a lipase that dramatically decrease once the stone pops out. The enzyme levels fall very fast. If that is the case than an emergency gallbladder removal is done. 

3. Intrercostal nerves can be mapped by a Pain Management Specialist. Generally, the are anesthesiologists. You would be placed on a table and the doc would test each nerve individually.  Once the nerves are identified, then Trigger point injections are tried. Generally this may first be done with a Caine product. If there is good result it can be repeated with eith a caine product or a steroid. A thoracic guy may not be the perfect guy to identifiy intercostal neuralgia. My first chose would be an anesthesiologist that is a well certified in Pain management. Neurologist can too, but I have seen both work. The Anesthesiologist are the best. Maybe the one's I worked with were the bestesst hahaha.

4 The radiation could have caused intercostal nerve trouble at multiple levels, From at least T2 to SI right side, my first reaction to that is positioning, but we will keep asking questions :)

5. the gallbladder doesn't like stress and very often(sorry no statistic) gets into trouble after the body has been through trouble. You certainly present as having gone through trouble. 

6 Something as simple as positioning on the table could lead to a one sided presentation of pain. Generally, though those symptoms would show up earlier. BUT never assume anything can be normal or usual with the body under stress.

 .You may have read this already, but before this final posting, I did add bit's and pieces through out. so rereard Thanks


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 4, 2018 10:15AM NanfromOntario wrote:

Sass, thanks for your reply, your thoughts are on same lines as the doctors. I had my gall bladder removed many years ago. Enzymes were tested. I have a gi appointment in Jan, I was referred in April. Long waits here sometime if not urgent. I was referred to pain clinic but waist list was 2 years so I scrapped it. I can go out of town for quicker. I have no nausea and I eat good. Lyrica has caused weight gain but I am only 2 pounds over normal BMI. I do not normally, nor ever have drank more than the occassional glass of wine. The ascites was looked at again with ultrasound, said small and due to age. I am 53 post menopause. I am going to doctor today. Will have this cough assessed and discuss pain. Oh rad onc said it is not from radiation or surgery, started 2 months after rads and 6 months after surgery, no chemo. Not sure how long on table but I had 2 lumps removed one IDC and DCIS, the other LCIS.

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 4, 2018 10:23AM NanfromOntario wrote:

Pain doesn't really start anywhere, just hurts in different places different times so hard to describe. Right now I have pain front ribs a good 2 inches below zyphoid process. Right top of iliac crest bottom of ribs on the side and should blade area but deep. Wrapping around. On side, no where near breast bone. Pressure helps

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 4, 2018 10:39AM sas-schatzi wrote:

Nan, thanks for answering all those questions. There is a condition where the common bile duct can spasm. A very old treatment for it is belladonna. which as you know is a narcotic. But like I said it's a very old treatment. It reduces the spasm of the common bile duct. It's a least worth a discussion. The spasm if present can cause significant pain

I haven't looked at the ascites info yet. That's a big clue, just don't know what it means yet.

Talk with the doc about nonalcoholic fatty liver and ask if one of the symptoms can be pain and ascites

Be back

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 4, 2018 11:00AM - edited Dec 4, 2018 11:13AM by sas-schatzi

Nan, I found this from a forum. It's anecdotal a patients question followed by a response from another. It mentions  things about the common bile duct, pain description, test, meds that may help, 
I mentioned having a GI doc very skilled at ERCP. the response also mentions this. 

I guess I'm really showing my age when I mention belladonna as a treatment for pain. 

Here is a description of belladonna. It doesn't list common bile duct spasm, but remember I said it was a very old treatment, Hahaha ancient. But you can see from the reading it is used for many GI/GU spasming.

https://www.drugs.com/mtm/belladonna.html 

B e back I forgot to leave the other link

Here's the link discussing s/s's of the bile duct. Many don't realize you can have this type pain without having liver signs

https://www.medhelp.org/posts/Gastroenterology/enlarged-bile-duct-spasms-after-gallbladder-removal/show/1287155?li_source=LI&li_medium=default-widget-top



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 4, 2018 11:03AM sas-schatzi wrote:

I did look at the ascites. Many origins. As a nurse I know you will understand all the different rule outs.  They have done some for you.
Where do you live that it is taking so long to get appointments?

2 years for a pain management appointment is awful. Obviously underserved.

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 4, 2018 11:24AM - edited Dec 4, 2018 11:37AM by sas-schatzi

Your description of pain area-----

"Pain doesn't really start anywhere, just hurts in different places different times so hard to describe. Right now I have pain front ribs a good 2 inches below zyphoid process. Right top of iliac crest bottom of ribs on the side and should blade area but deep. Wrapping around. On side, no where near breast bone. Pressure helps "

I'm going to bring some anatomy pictures. May help. I'm thinking if you have a picture that you can point to at the docs office. who knows it may help

https://classconnection.s3.amazonaws.com/704/flashcards/586704/png/liver_gallbladder_and_pancreas1310225441956.png










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 4, 2018 12:26PM sas-schatzi wrote:

Chit lost a long post

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 5, 2018 10:04AM NanfromOntario wrote:

Doctor visit was very quick, not much time, one problem only ( OHIP rules, having socialized medicine has so many good things about it but there are a few draw backs, however I am grateful for it). She assessed my cough, heard how tight it was, chest was clear though. Gave me a salbutamol inhaler and a requisition for a chest xray. Said to come back about pain but thought that if puffer helped the pain might be less. Well she was right, I used puffer and my pain has been better since last night. I am glad for chest x ray too as I think that is important. SHe basically said we don't know what the pain is from, we treat symptoms and watch and wait. Since I have had imaging and seen specialists. I will discuss the biliary spasms with GI guy. I have MRI in Jan ( bc mammo did not detect my cancer). I am weaning lyrica to see what happens as the pain is still with me and I still have bad days even on it. I want to loose the 5 pounds I gained while on it and to think clearly. I believe you are right in saying there is likely more than one thing going on. Thank you for your insight as I always think it is cancer and get in a bit of a tail spin.

I will keep pestering the doc, she is very nice and patient but very busy. Any other ideas let me know. I live in South West Ontario Canada, 1 hours south west of Toronto.

I do wonder why I have a cough, no cold symptoms, she did not hear wheezes, no fever. Very tight, but my mom ( who had BC) has had a chronic cough for years with no dx found.

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 6, 2018 11:20AM NanfromOntario wrote:

Chest x ray came back normal. How many people cry because their results are normal? Well I have been crying, strange to be disappointed but I just want answers, there is something wrong with me on my right side, I feel it all the time and nothing shows up. I guess my doc was right it is all in my head, I am just f___ in the head. I am so depressed and so upside I just want to run and hide.

Thanks for trying to help, I am helpless. I give up, maybe it will just go away someday. I was praying for an answer but did not get one so try a different angle I guess.

PF from radiation did not even show on x ray - WTH oh well, just a nut case I am.

Dx 5/30/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 9/20/2017 3DCRT: Breast
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Dec 6, 2018 01:38PM Lita57 wrote:

Nan, I have a lot of "phantom pains" that come and go...headaches, aches in the hip, aches in the femur, abdominal muscle stuff...I just live with it.

If I'm stressed out or worried about something, it makes it worse.

L


Stage IV De Novo, Occult, Amorphic. New Brain Mets Aug 2017. Now on Gemzar. I've been dragged into an arranged marriage I didn't agree to. Divorce is off the table now that I'm married to Mr. Cancer. Grateful for however many days I have left. Dx 4/14/2016, IDC, Left, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Radiation Therapy 4/27/2016 External: Bone Targeted Therapy 5/15/2016 Chemotherapy 5/22/2016 Xeloda (capecitabine) Radiation Therapy 4/20/2017 External: Bone Dx 8/23/2017, IDC, 5cm, Stage IV, metastasized to brain, Grade 3, ER+/PR+, HER2- Radiation Therapy 9/6/2017 External: Brain Chemotherapy 10/10/2017 Taxol (paclitaxel)

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