Pain and Other Things
Comments
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Rosiep reread your post forgot the mouth pain. Ask for lidocaine viscus and magic mouth wash.
If you are having troubles even taking supplements like ensure, you will have to consider a gastric tube. The doc's should have discussed this with you. It's a tube put through the stomach wall and you can give yourself feedings. It's done by a GI doc. The Mo should be following you closely.
Some doc should be following you closely. The RO aren't of much value covering medical needs.
Check your weight daily.
Also check with your doc about a drug you can take to prevent constipation. a few are on the market.
I'm sending rhis as a PM too. Sorry woke up late.
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Thanks Mari, I'll take a look at it
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Sas
Well went for my first radiation treatment. No problem except as stated in one of your postings It says that the radiation can effect the trigeminal nerve. Well Ibelieve it has for sure. because I am in pain. I got the Fenadyl patch 12 mg and I have itone but it doesn't even touch it. I even took my regular aceteminpohen and ibupdrofen that I had been taking but that didn't work either. Feel a little relief sitting hereon the computer :-)
Now what am I going to do. If the radiation does this I don't know that I will be able to continue with it.
Thanks for all your help
Rosieo
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A few seconds ago sas-schatzi wrote:
Folks I think John's link should be posted around in the threads you frequent.
1.Reason is most here have sleep problems.
2. It is a naturally occurring in the body
3. we need to use any thing that gives us an edge.
My personal experience with it is I used it for several years after BC @ the 10mg level along with Ativan. I had horrible insomnia. My ER+ path report said unfavorable outcome in two places. Always wondered why I haven't met'sd yet. Now 7 1/2 years.
I keep wondering if there was "something" I was doing that was helping?
Recent research is keying in on other things other than standard chemo drugs we need to keep these on our radar and make the decision whether they are reasonable to add to our regimen.
We all know it's still a crapshoot. I find that word the most disgusting word in the dictionary. So, this is an emphatic statement.
John reposting on my usual threads. Thanks for all the research you do.
18 hours ago JohnSmith wrote:
New article: Pre-clinical models reveal that Melatonin reduced proliferation of breast cancer stem cells in ER+ tumors.
https://blog.cirm.ca.gov/2016/08/24/sleep-inducing-hormone-puts-breast-cancer-cells-to-rest
TAGS: CSCs, transcription factor OCT4, encoded by the POU5F1 gene, mammospheres, Bisphenol A (BPA), MCF-7 cells -
BBL Rosieo on a mission
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Rosieo, read the monograph on Fentanyl, it can take up to 24(18) hours to work. That's why you have to ask for permission to use another 12.5 mcg patch after you see the affect after minimum 24 hours.
Do not take another opioid like hydroconoe, Oxy, Morphine, Codiene while in the phase of adjustment on Fentanyl
Sure wish you had a doc advising.
You are doing the right thing by taking the NSAIDS.
Did you get Lidocaine viscus?
I'm only familiar with carbemapazine per the monograph. You could ask your doc if there is a dosage adjustment on it that could be made. BUT BUT tell them you are being adjusted on Fentanyl
The importance of one doc adjusting all pain meds is critical. I,e life critical as well as pain critical.
Whose the BOSS on your pain meds?
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Rosieo I know in the troes of the pain , the last thing you want to do is read all the stuff I posted to you. Each one was for a reason. You already know that what you are experiencing is awful. Jaw mouth pain with or without teeth is absolutely one of the worst pains. Do what you can about the reading.
Rosieo sending a PM
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Rosieo you haven't posted and you haven't called. Hope you are okay. One of the things I was going to suggest on the phone was to try and figure out which doc ought to be taking the lead on your pain control. Try the oral surgeon. He may be able to figure things out the best or get you into a pain management doc the quickest versus a several week wait for a new patient appointment.
Talk with him about TMJ along with the other pain. It's not necessarily recognized right away. As I said before there is only on drug that can break a TMJ spasm and that's Valium.
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Sass
Thanks for your concern. The oncologic radiologist I am going to is going to regulate my meds. He told me to add another Fentanyl patch which now I am doing 25 mg. He also said I could take the hydro con for breakthrough pain. I find that I am getting a lot of pain in the Trimaglic nerve ( I know I don't have it spelledright). I believe the radiation is irritating it. That is what my family Dr was giving me the carbemezine for.
Also now looking to take a laxative tonight. No bm for two days. I am going to take M of M. Senekot they told me to take didn't work. Thanks so much for all your help. You are very kind personto put in all this time for people
Rosieo
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Rosieo, Hugs, the time is fine. Sounds good on the hydro and the Fentanyl patch 25. Glad one of the docs is taking the lead. Finally. He probably was in the lead, and I just hadn't heard it yet.
On the carbamapazine ask the PCP if you are at max dose on it. Also, tell PCP what the RO has you taking for pain meds, so, if there is a chance to move up the carbamapzine dose, she will know what the total drug mix is.
The carbamepazine has a special characteristic of calming the trigeminal nerve. I have no clue what it's dose range is and how it mixes with other drugs.
Consider magnesium sulfate if no BM by tomorrow. It will clean you out. BUT you may have the squirts for a couple of days. Hate to say it, but consider Depends. Farts can be unfortunate. Definitely don't wear white pants. We need to get you to the constipation thread. So, much info there already. I have a poop plan written on one of the pages. Sure hope I put the page number in the topic box.
Next prescription after hydrocodone ask for oxycodone and see which one works better for you. My observation over the years is that they work differently for people. I never found a reason why, but they do. AND you can't tell which one works better for you until you take have taken one then the other.
Rosieo this difference between how hydrocodone and oxycodone works for some one was to me so stark after awhile. That I used to routinely call the docs and ask for a switch to the opposite med with good result.
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Rosieo, Duh, are you in a state that has medical marijuana? No clue how it blends into a pain management program, as it has only be approved in Florida recently(kinda).
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Sass
MY RO raised my carbemizine a little. Initially (when I was first prescribed by my regular Dr) He prescribed 400 mg a day/) 200 mg then 12 hrs later another 200 mg.
The first day I took themI was walking into thewalls...:-) So I have beenonly taking 100 mg then 12 hrs apart another 100mg. Now I am going to talk 200 mg at bedtime, then 100 mg 2 other times. whichwouldgiveme a total of 400 mg. Maybe if I get to the initially prescribed 400 mg It will change things We will seetomorrow. I am going to take 200 me tonight at bedtme. No I do not live in a medical marijuana state. I live inPa. I asked my RO what he thinks of MM. he said "you don't need it"
The milk of magnesia worked as you prescribed magnesiurm sulfate. :-)
MY RO believes best in the Senna
Thanks again Sass.
Rosieo
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Morning Rosie, GOOD
Carmapazine is Tegretol. It's original use was for seizures. That was the same with neurontin/gabapentin. With each drug it was only found after they came to market that they were good for neuropathy. They each have dose ranges. Glad he is adjusting the dose.
Constipation: Taking the senna daily is a usual part of a chemo/rads plan. But you need a step by step plan for fixng constipation when it occurs. Glad MM worked.
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This is very important for everyone. From here on out only one person should be prescribing your pain meds. IMO that doc should be the PCP. The PCP is knowledgeable about all the meds you take.
Taking more than one drug can starts on the road to polypharmacy. That simply means many drugs. The more drugs you take the greater the likely hood of a drug interaction that can be a problem
Will write more later. Busy day
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I opened up BC.org this morning hoping to find some support for the pain I'm experiencing and what hits me in the face? Breaking news about current breast cancer research: "If You Expect Hormonal Therapy Side Effects to Be Bad, They Will Be" So, based on a study including all of 111 people, my pain is my fault! This is not helpful. Maybe even a little bit irresponsible.
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Sara, Well the BCO link is WTF do they know, unless they have lived it. The AI's are a poison. Yes, we are living, but for some the living can be HELL.
I am now going to read the German study. Had intended to play tonight, but if the German study has holes in it, I will rip it apart. Even without reading it a study has to be reproduced technically three times before it is accepted. That's why there are three steps in drug phase trials.
This type of research would have to repeated 3 times independently because we are dealing with a subjective data. That type of study is/can be dangerous. To much can be left open to interpretation b/c of bias by the researcher. Plus, depending how the questions were formulated can lead to exactly the biased answer the research was looking for.
Be back later.
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RE:German study
Mods Please send this on to the editing board. Normally, I'd keep this between us, but it will get posted by one of the research geeks, So, I'll be the first research geek to post it.
I respectfully ask that the new page, be pulled until further research can verify what the German study is promulgating.
http://www.breastcancer.org/research-news/hormonal-tx-effects-worse-when-expected
These psych type studies have been rife with bias researching for years. This study has NOT been duplicated by any other research group. It may have gotten through peer review at oxford journals , but SO did the studies with Aromatase Inhibitor Novel drug Arimidex. The lead researcher in that group from Michigan said in a post marketing interview. "We did not see the complaints of Bone, joint and muscle pain, we will have to look into this". No shit Sherlock.
I know folks at BCO watch what's happening on the boards. We have LOT's of very strong women here who went into AI and Tamox therapy who have been laid low by these drugs with all kinds of s.e.'s
Now this study that has a small cohort 111. I can see 111 people at dinner @ Olive Garden. This is not appropriate at this time for this board.
Someone has to relook @ the whole subject and search for comparative studies.
This is a damaging article to the worldwide BC community. Docs all over the world will be using this very limited study to tell patients that it's all in their heads.
Did you notice the department that the researchers were working out of? Department of Psychosomatic Medicine and Psychotherapy. Right there tells me they have a bias.
Do what you can, but my first duty is to BCO members.
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Hrmpfhhht, spitting nails. I hate bad science being promulgated for some damn doc to use as evidence to blame the patient. The patient having no clue that the doc is basing a stupid answer based on stupid science.
Now Sara any questions?
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hello! I don't know if I'm on the right discussion board but I have been having this tender feeling close to my collarbone (both of them). I have IDC stage 2 in the right breast with axial my node involved. I'M worried this could be a bad sign? Or maybe I'm just overreacting. I've had 2 rounds of AC so far and have gotten through both with minimal side effects. I called my onc and she said it could be from the neulasta. But I can remember having this unusual tenderness before my diagnosis in July. I've had a PET scan and it didn't show anything. Any advise ?
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This note went to the Oxford journal/ annals of oncology
Can't believe you published this very lacking study. The cohort was 111. with a high dropout rate.
Do you have any, any clue the damage you have done to women in the world wide BC community. Some docs are now going to tell their patients it's all about there "attitude".
If you had bothered to really review the subject, you would have never published this very inaccurate study.
But now it will be quoted to millions of women for years, by docs that believe this drivel.
I have been active in the Breast cancer community since 2009 on breastcancer.org. You have trivialized this poison that cripples women with pain and disability. How irresponsible of you. Unforgiveable. I usually trust you as a source. You have lost my trust. Shame on you. Shame -
Sas, I agree, it's drivel. Haven't us older ones grown up in a world where when the docs can't figure it out, then it's all in our heads? It took me ten years to get treated for thyroid when I had debilitating fatgue and a host of other symptoms, poo pooed because labs didn't show it. Now still the patronizing is being perpetuated. A very irresponsible study. I would like to know have you taken any AI? If not would you if you were advised to? Thirdly, have you ever heard of an AI or other medicine such as gabapentin causing trigger thumb. Thank you for your never ending vigilance. We need you.
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6 hours ago Kgonz16 wrote: hello! I don't know if I'm on the right discussion board but I have been having this tender feeling close to my collarbone (both of them). I have IDC stage 2 in the right breast with axial my node involved. I'M worried this could be a bad sign? Or maybe I'm just overreacting. I've had 2 rounds of AC so far and have gotten through both with minimal side effects. I called my onc and she said it could be from the neulasta. But I can remember having this unusual tenderness before my diagnosis in July. I've had a PET scan and it didn't show anything. Any advise ?
Hi Kgonz, I'm sassy
I' may not be the best person to ask, but I'll answer what I know. .......Hmmmm Pet scan was when? Where on the collarbones exactly? Have you been pushing/ touching on them since the first pain was identified? Was it pre or post PET scan.? Next time your Oncologist(MO) says something like that ask them to explain. Not familiar with Neulasta affecting that area. Not a marrow producing area. Have you had surgery yet?
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Kgnoz, on thing for sure is if you keep touching pushing an area that is painful i.e to see if it's still painful, it can create an inflammation. The area becomes painful b/c of the touching/pushing.
But if you are post surgery by any length of time, then it becomes a different question. I have areas on the chest that after 7 years are painful to the touch and some times thump. But I had PS that I didn't know was less than stellar. Makes it truly difficult what to worry about. So, that part of the question I can answer maybe. If you had a recent Pet and the scan was negative, Then the question to the doc is "If I have this pain here and here, and the scan is negative, what does this mean?
I know she said Neulasta, but don't let her off the hook. Collarbones aren't involved with neulasta.
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Mods: It is too easy to "report" a post. I have done so accidentally a couple of times just by scrolling carlessly on my iPhone. Thanks for the message: "Are you sure you want to do this?
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I don't think anything short of a lobotomy will separate me from the pain caused by this AI. It's inventors, salespeople and prescribers might consider taking it themselves for two or three days just to better understand why their patients might prefer to take their chances without it. Maybe they would go back to the drawing board. I think I just took my last pill. I'm old, I'm skinny and I think I just might need what little estrogen my body makes. Why the hell is this a one-size-fits-all drug? Lying here in white hot pain (death by a thousand cuts) I can't move, I can't NOT move, I have to think about breathing. Wondering why on earth I took this last pill. Wondering if there is an antidote. Aha! maybe I can find that old tube of estrogen cream that I still have (because I don't know how to dispose of it properly) and rub it all over my body...probably not a good idea.
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Kgonz - I was recently diagnosed with Fibromyalgia. I get the same type of pain around my collarbone, plus a burning sensation in my former breast (cancer side) and sometimes feel a swollen lymph node in my neck, which led to my PET. Like with you it showed nothing. If you have other symptoms similar to Fibro, you might want to think about getting an evaluation. A word of warning....there will be lots and lots of tests and there are no easy answers. At least for me having a diagnosis has made me feel better in a way knowing it's not all in my head. Plus the PET scan put my mind at ease. Sort of. Until I started worrying about all that radiation exposure, lol! In the words of Gilda Radner - it's always something!
P.S. I can't say it's a pain really - just a sensitivity. My PET showed degenerative inflammation in the joints and in the sternoclavicular joint. IDK - is this the same as the collarbone??
That study sounds just awful. I'll resist the urge to read it. Even with a dx of FB I keep wondering if I'll ever be able to last 10 years on this stuff!
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Sass
When do you consider yourself constipated. I had a blow out from the Milk of magnesia on 8/28 which gave me hemmoroids :-) Since then I have been taking the senna with a bm on the 31st. Nothing since.Today is the 4th. When to take something else.//I would like a bm. :-)
Rosieo
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Here's a link to the page on that research article that I raised the dickens about the other day. The Mods did a name change on the article, and there was input from some here. I think it's important that more add their thoughts as we need tp prevent this from happening again.
https://community.breastcancer.org/forum/73/topics/847566?page=1#idx_27
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Rosie, technically most resources say 3 days. BUT I disagree with that bc/ it is to limiting. Each body is different. Particularly , here on BCO. Treatments interfere with normalcy. Just as you have found, you have developed some hemorrhoids. That tells me there is too much pressure in the rectum. Your poop plan must be aggressive to maintain a daily evacuation as much as possible.
Get thee to the Constipation thread and we can work on it there, please.
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