TORADOL (ketorolac) linked to Recurrence Prevention
Comments
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From 123justme. http://www.uchospitals.edu/news/2012/20120321-opio...
BBL housework is calling. Got to take care of the OCD.
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Thanks Loverly
sassy -
Here's a very rough draft:
Dear Breast Surgeon/plastic surgeon/anesthesiologist:
Before my surgery on <date>, I would like to discuss with you some studies I've been reading about both in the online breast cancer community and on reputable sources for medical information, among them Medscape and Pubmed.
As I hope you know, I came to <<hospital/medical practice/doctor>> because of your reputation for high quality cancer care, and for this reason I suspect you might know about some studies that seem especially promising to me regarding the effect of painkillers and anesthesia on the recurrence of breast cancer.
Among them are <<link to forget, retzky, study about paravertebral block, and opioids (Loveroflife's link above)>>. I am not a medical expert, but I have read these studies carefully, and the data in them is enough to make me feel strongly that I would like the following:
1. The use of ketoralac (Toradol) pre incision as well as post surgery.
2. As little use of opioids as possible both during and after surgery
3. The use of a paravertebral block rather than general anesthesia.
Please let me know at what point before my surgery we can discuss these studies. I am hoping you may already be using some of these methods and that you can tell me more about them.
Many thanks, <<patient name>>
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Ah-hah--------Well, this is going to be allot of work. I apologize for not getting into it before. I know Fallleaves has been doing allot of work on blocks and now vaguely remember re: opiods. I was very happy when Falls joined us b/c of all the info she had gathered in her thread on Toradol. Also, 123, has been doing lot's of work on NSAIDS and apparently posted this too. She sent me lots of studies by Pm. Some I read others I didn't. Only so much time to fill the brain.
For me what's ironic is when I returned to the surgical floor years ago, I did a search to see what was new in prevention of Ileus. I came across Entereg that was in phase one clinical trials. It's action was to block the Mu receptors in the colon. I was so convinced of it's potential I bought stock. It's the only stock I ever bought outside of my mutual funds. During the period I held the stock, they're were drug development problems. I lost money and sold the little bit that was left.
The research in relationship to opiods and cancer revolves around Mu receptors. How it didn't drift into my research because the time period was the same.. Clueless. I know all here that search will understand what I mean by 'drifting into my research'. For those that don't, in looking for one thing, something else looks interesting and you 'drift' off topic I found the Toradol studies in just that way.
I think a new thread that incorporates all the studies related to opiods, cancer, and immunity will best serve the subject.
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I agree. And finally, a trial to look at the use of aspirin and breast cancer recurrence! (My one wish though is the inclusion of stage 1 BC)
http://boston.cbslocal.com/2015/09/21/boston-hospitals-aspirin-breast-cancer/
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I don't know how this thread got removed from my favorites, but I got no notifications. Glad I checked in on the clinical trial board to see what else was going on.
I guess it didn't really do anything to clear things up for me because it was all common sense. Right? I was hopeful for something more specific, such as, "In our experience we have seen more bleeding problems with procedure A vs. procedure B when Toradol is used." I can't ask my surgeon about her experience because she doesn't use it, so no, I don't know anything more than I already did. But let me be clear, I appreciate any answer and I fully understand that not all questions have answers at this time. Just explaining my thought process in my situation.
Here's my concern: I've had a lot of time to research this issue and ask questions because I've experienced an unusual wait time for surgery. But I still went in for the first meeting with the surgeon with some misconceptions about the opiates and the Toradol. I could have made something happen that was very wrong for me if I didn't have time to find out otherwise. Many women in this position don't have the luxury of time and are going into these appointments insisting on something they believe they need to survive this disease, but without being fully aware of the risks.
I want to use someone in Steph's position as an example because of what happened to her, but I mean it in a general way that relates to all women seeking Toradol, and not as a commentary about any particulars in Steph's case. Maybe someone in her individual situation never should have been offered Toradol, but she wouldn't have known that because all she knew from this discussion was the pro-Toradol information. From what I am seeing, any resistance from the surgeons and anesthesiologists is generally being received as a lack of knowledge and education about Toradol, or misconceptions about the risk, when there are going to be times their original instinct not to use it on a particular individual will have been correct. How do we know the difference?There need to be more disclaimers about the risks which do exist. Regardless of studies that suggest Toradol is safe to use in surgery, there are going to be women who shouldn't have it. Who shouldn't be insisting upon it against their doctor's advice, or searching to the ends of the earth until they find someone who will do it. What kind of guidelines to this end can we provide? I am by no means the right person to answer that, but I'll use an example of something I learned from Steph's case. If you already have a low platelet count or platelet dysfunction, you may not be a good candidate for Toradol. I think we can say something general like that without crossing any ethical lines, so women understand when their doctor says no, there are other possibilities besides resistance to Toradol.
Please don't misunderstand what I'm saying here. I'm not criticizing anything that has been done before, which had to go through its natural evolution from no information to more information. I only hope that my take on the subject helps toward creating the FAQ and providing a clearer path for women who come after me.
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There you are 123, I've been thinking I was going to post----" where's 123?"
I'll mull over wording for a new thread. The name and introduction has such impact on all that happens after that.
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My platelets were 210 before surgery..I am not sure what causeD my hematoma it's just a risk I suppose but I have no regrets if I didn't ask for toradol I would have always had regrets I used no morphine even though they offered it to me many many times and they worked well with me at using low amounts of opioids although aome were used when I woke up both times I know I was begging for something for pain..I am now not on any pain meds in no pain just constipated and a little worn out
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Steph, my platelets are lower than yours were. 191 - they were 232 just a couple of weeks before. I don't know if the fluctuation is normal or if the fact they are going down is an issue. I'm seeing the MO/hematologist today and I'm gonna ask her if there is anything about my bloodwork that puts me at higher risk of bleeding. I'll be here for about another hour if anyone has any ideas of additional questions I should ask.
I didn't mean you personally shouldn't have received Toradol. Tried to make it clear I was talking in generalities, inspired by the problems you had. So glad you are feeling better!
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I think it's important to remember that even though a person may seem to be an ideal candidate for a treatment, adverse outcomes are ALWAYS a possibility, because we are each unique individuals. I did receive Toradol during my lumpectomy but had no idea that I was going to receive it. I had NO pre-op labs, scans, X-rays, etc. done prior to or since surgery and had no bleeding what so ever. In every study there are outliers which is an expectation....
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I understand solfeo no worries I'm happy I van put my experience out there to help other ladies to make important choices
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Solfeo, your post is amazing for me on two counts.
1. Since Steph's bleed my thoughts have been trying to get ordered on the moral and ethical responsibility of what I started here.
2. Within the last hour I was trying to compose a post that addressed it. I couldn't pull the words together. I gave up and erased what I had and just posted to 123 and there is your post.
Your post encompasses all or most of my concerns. I think you have done a tremendous job at summarizing what the problems are in doing a thread. The risk of just discussing it, may unintentionally lead to someone having a problem. That had they not read the material they wouldn't have broached the subject with their doc. All would be left in the hands of the doc to treat as they normally do.
We have had 9 pages of discussion about a drug before Stephy's bleed. Whatever caused Stephy's bleed is unknown. They only thing that can help define the situation is a Hematologists evaluation. I just put the post on preview to look at your post for this phrase " If you already have a low platelet count or platelet dysfunction". Stephy's post was there with her pre-op platelet count of 210. Her post op platelet count was 114 after the bleed. Normal is 150 -450.
Patients with low platelet counts and platelet dysfunction would not have elective surgery. This is why CBC's are done preop.i.e to identify abnormal levels. In the case of a low count the cause of the low count would be determined i.e coagulation studies or genetic factors. That evaluation would be done by a hematologist. A correction by a platelet transfusion would be done or in the case of a genetic defect whatever the hematologist advised to be done.
A couple of definitions are needed to understand blood loss. What we see as blood includes:
"1. The circulating fluid (plasma) and suspended formed elements, such as red blood cells, white blood cells and platelets .
2. plasma which is the yellowish fluid in blood that makes up the 55% of the total blood volume. Consists of dissolved proteins, glucose, clotting factors, mineral ions, hormones and carbon dioxide. In the body, plasma serves as a medium to transport ."
In a bleed we lose all the components. So the platelet count could be low b/c of blood loss or in the case of a genetic thing "something" happened. As I stated before in Stephy's case b/c no absolute reason is known as to why she bled, it's important to find out for the future.
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When I started the thread, the very first post on page one, I put the definition of a " Black Box Warning". Then I put the Black Box Warning for Toradol. ( I revised it after Stephy's bleed to include the full monograph, but it included both before the revision). I did this intentionally at the beginning b/c historically I knew discussion of risk was going to be a big part of what would be talked about between us, and then with our docs.
As Stephy stated, she was fully aware of the risk and doesn't regret her decision. I would have done the same.
What I do worry about is someone who doesn't study as well as those here right now. They have the drug by request for their surgery, have a bleed, and then think they were harmed by the information here. But that risk is mitigated by the fact that only a physician can make the final decision to give the drug.
We may present the doc with the Dear Doctor letter that includes the information related to a drug, but all after is up to them. When a doc says it is not their normal practice to use a drug, but at a request say okay, trust that they are thinking about all the reasons a drug shouldn't be used and do any of those reasons apply to you.
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123 - That was something I brought up to the new surgeon who didn't want to try the Toradol. The first surgeon just included a sheet in her pre-op packet that said you will be getting Toradol and you should avoid opiates if at all possible and listed the reasons. Even when we spoke about it there was no discussion of the possible complications (but I already knew), it's just the way she does things. She must not be having problems or she would do things differently. I would like the new surgeon to not give up on other women who make the request after me, if I were to have problems that are unique to me. I'm willing to take the risk to get the benefit, but I don't want to ruin it for everyone else by not doing everything I can to avoid the complications. I feel responsible to the larger community since I had to twist her arm into agreeing to use it.
Leaving for appointment. Will report back if I learn anything I think will be useful to others.
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I guess what I am seeing here is that we want our docs to consider new information, i.e. breaking news, that may influence our treatment. But we also want them to tell us when the particulars of our cases may mean that a particular treatment may not work for us. Which means they need that deep understanding of whatever it is--both the positive, which we have all read about regarding Toradol, as well as the negative cautionary circumstances. And we want them to spell it out for us so we know that they are considering it seriously and not blowing us off.
Example: the anesthesiologist I spoke to before surgery treated me like a 6-year-old. He may well be versed in the possible results of Toradol use during surgery. But I'll never know because he wouldn't communicate. The only way I know that the topics of this thread are definitely on the MSK radar is because of the conversation I had with the OR nurses. I do plan to follow up with the surgeon when I see him next week, since I'll be 10 days post-surgery and a little more myself.
And again, my interest in this thread is primarily in how we can most effectively communicate with our medical caregivers, especially in circumstances in which we're not at our best (tired, sick, scared) and the power dynamic is not in our favor.
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I agree rainnyc. Unfortunately, I think we are sometimes placed between a rock and a hard place and we are at times at the mercy of the physicians who treat us.
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Solfeo, I just finished my post and catching up on the interim posts. You are likely off to your MO/Hematologists. Yes, fluctuations in platelets in the normal range is normal. To take it one step further all lab value's have a range of normal and all value's can fluctuate. If I have labs drawn today and tomorrow, they're will be some differences. The body is dynamic. "Things" within us are being produced, put into production, used, filtered, and disposed of minute by minute, hour by hour etc.
When something is outside normal range, then the doc will do what is necessary to determine why. A specialist i.e hematologist, nephrologist etc, isn't always needed. Basic problems are handled by an Internist or family practice doc. It's the unusual that is sent on to the specialists
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Lordy, been sitting at this machine and typing for 10hours. Someone on another thread asked for info on how to evaluate for non- verbal s/s's of pain. After that post was done. I took that other post from the night Stephy was in pain and posted it there. The post from several years ago. I took the opportunity to revise b/c of my new learning re: opiods today. Krips it sucked. The writing was awful. But it was written at 1:20 and I'm guessing with some wine. I tweaked it and reposted the newer version back here too. Probably, could use a few more tweaks, but I'll catch it the next time.
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She looked at my last two labs nothing stood out in terms of bleeding risk. She said I should have blood checked one more time before surgery, just to look for a continuing downward trend, which could signal that something is going on that needs to be investigated further. Just what I need, another delay!
I stopped any supplements that thin the blood a week ago because I want to be ready for surgery whenever. I don't think it's off topic to say I have concerns about that, because all of them are natural anti-inflammatories. It's like everything we are required to do to prepare for surgery adds to that perfect storm we are trying to avoid with regard to inflammation. And in most women that is still being done without the Toradol, etc. to mitigate the damage. And we don't even know that Toradol works.
My takeaway from this whole thing has been that until Toradol's effectiveness is proven, it's best for me to avoid surgery whenever possible. I'm leaning toward BMX with possible delayed reconstruction because I don't want to be obligated to have more surgeries if I have complications from Toradol. If I don't have problems I can always think about reconstruction later, and after living without my breasts for a time, maybe I won't even want it at that point. So maybe going flat is the best option for me. It's certainly not worth it to me to risk recurrence just to have boobs.
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Questions: What is the current thinking about the amount of time women who have had breast cancer should avoid opiates. For the rest of their lives? Use Toradol in every future surgery indefinitely? Or is it just until they are considered cancer free for a particular number of years? I'm sure they don't know yet, but are there any theories?
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Solfeo, It is the right safe suggestion. But if nothing in your hx, says a problem is there, believe it's just a shift within normal. If you didn't catch this line in a previous post "If I have labs drawn today and tomorrow, they're will be some differences. The body is dynamic. "Things" within us are being produced, put into production, used, filtered, and disposed of minute by minute, hour by hour etc.". Day by day, week by week.
You have done so much to prepare. I suggest that you add one more thread to your favs list.
https://community.breastcancer.org/forum/102/topic/818346?page=559#idx_16744
Let me know what you think? I tend to begin and end my day with it
sassy -
Warm and fuzzies! Just what I needed today when my positive attitude has taken a sudden dive (not related to anything here).
Have a great weekend Sassy (and don't work too hard), and everyone else too.
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Solfeo, Well since I had a "no chit" learning day re:opiates and my previous mantra postop was be "highly drugged and well motivated." Feet on the floor marching within 3hours of returning to the surgical floor after an abdominal hyster/bso and then a 5yrs later a partial colon resection with opiate PCA going strong. AND Dilaudid PCA for BMX with feet on the floor within a few hours, but not as fast as the other two. I'm not the poster child of what I learned today. In fact with today, I sat shaking my head. Another puzzle piece that doesn't fit. Nothing explains why I haven't mets'd. I used fentanyl patches from Dec 09 till just before crani in 2012 b/c of outrageous pain from AI's. Used oxy sparingly, until July 2014. Post Polio's have an odd thing with pain, AI's took it to a whole different level.
2009, my brain tumor was an incidental finding on a post fall MRI. I was told of it on the same day as the breast bx that we knew was going to be BC. To complete the triad of that day. I thought the right thing to do was to tell the boss. Relieved from duty. Brain tumor dx, BC, and lost my career in less than the space of 4 hours. What the hell, had a lot of wine that night. 2012 at removal, brain tumor was benign. Removed it b/c it decided to grow. it's name was Little Bean.Then thyroid cancer in 2014. Neither the brain tumor, nor the thyroid cancer are considered to be mets. Were they related maybe.........but that's diverging.
Believe it or not, that's only the partial story. I can't even believe the whole story. Of recent times, I've started to refer to it as the 'Troubled Time'. It allows me to disassociate with what happened. It works
If you notice my signature line. There is no info. On the OMG THEY FOUND A CURE FOR STUPID thread, it rivaled Saturday Night Live in the first 100 pages. Our stuff started to appear on fb. They're was this massive switch in names and bio's. I took my bio stuff off. It was okay for here, but not okay to end up on fb. The outcome for me was unexpected. I wasn't facing the dx and treatment with every post. That was very liberating. AND then I found that wonderful tag line. It's not what I do, but it inspires me every day to try.
The question RE:length of time on avoidance of opiates? Dunno. The one link I read today says we are in a similar circumstance as Toradol. Clinical trials haven't been done. Lots of mouse info, but how it translates to humans dunno. When I do the opiod thread set up, we shall see what comes up in the research.
Our special docs R&F, I think both have said that taking Toradol for subsequent surgeries would be a consideration. I know I did say the same thing pages ago. If the premise that Toradol interferes with the inflammatory cascade that can affect tumor cells that remain in the surgical field, circulating tumor cells at time of primary surgery, and dormant cells that exist at a distant site pre primary surgery is accepted as a potential ...then those dormant cells exist into the future until awakened. Prevention of inflammatory cascade occurring then should be part of the plan to avoid creating the environment for those cells to awaken.
Ah previewed post, and saw your post that you found Warm & Fuzzies.
Enjoy, and laugh a lot, I hope....500 plus pages should help divert you from worry sassy -
Hey, Sassy, and anyone else who is interested,
Here's the new thread on opioids:
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Sassy, I love your enthusiasm!
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Sorry, for my unclear screen name. Changed.
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Thanks a lot, to everybody, for your support, regarding our research projects. We are convinced that many progresses should be made.
Very difficult to give specific answer to specific questions. But when the studies (ie clinical trials) will give a definitive evidence about benefit/risk ratio, the only current way to do is to ask to the periop team (surgeon and anesthesiologist) what they can do with the techniques they have.
Sorry to not be able to give definitive answer yet.
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