Vent about Permanent Neuropathy
Comments
-
Blownaway may I ask what miligrams are you on Cymbalta and how long did it take to go into effect?
0 -
I was wondering if ya'll could describe the type of pain you experience from CIPN? I am reading conflicting descriptions and figured I'd ask ya'll. Is the pain ever achey or sore feeling.....or stabbing and shooting?
I appreciate any info ☺
0 -
Yes, Tang&Chris - all of the above. Different individuals have different pains. Some unlucky folks have all of the above at different times.
0 -
I take the generic version of cymbalta (duloxetine) 30mg in the morning. I describe my pain as constant deep achy pain in the bones (similar to the pain you get with high fever/flu) down the spine from the neck, between the shoulder blades, into arms, legs, ankles, wrists, hands. I also get sharp shooting pains that come/go quickly and are easier to deal with. Gabapentin did not relieve the pain completely - maybe 50%. Within 2 days of starting duloxetine, I was pain free. I decided to see if I could do without the gabapentin and some of the sharp shooting pains that I call zingers have returned as I weaned myself off but its not bad yet. I am down to 300 mg nightly at this point and intend to stop gabapentin completely and ask for an increase of the duloxetine.
0 -
Blownaway, You keep mentioning Cymbalta--and I do know that it can be effective for CIPN pain--but I posted earlier that it interferes with the effectiveness of Tamoxifen. I guess you are o.k. with that since you did not reply directly and are still touting the benefit of Cymbalta without mentioning the risk.
Now, I see others (Valstim52 & gardengypsy) asking you about Cymbalta, so again I have to feel I have to bring up that it is not good in combination with Tamoxifen.
This is from the BCO website:
---------------------------------------------
Medicines to avoid while taking tamoxifen
In the list below, the medications under the headings "Strong Inhibitors" and "Moderate Inhibitors" can inhibit CYP2D6 and interfere with the effectiveness of tamoxifen.
This list is incomplete and subject to change over time. Use it as a starting place and ask your doctor if any medications you are taking or that are recommended to you are compatible with tamoxifen.
Strong Inhibitors Generic Names Brand Names Bupropion Wellbutrin Fluoxetine Prozac Paroxetine Paxil Quinidine Cardioquin Moderate Inhibitors Generic Names Brand Names Duloxetine Cymbalta Sertraline Zoloft Diphenhydramine Benadryl Thioridazine Mellaril Amiodarone Cordarone Trazodone Desyrel Cimetidine Tagamet-----------------------------------------------
Note that Effexor/venlafaxane and Neurontin/gabapentin are not on this avoid list.
Yes, there are docs that will prescribe Cymbalta while on Tamox. So what! It's your breasts, it's your breast cancer, it's your Tamoxifen, and it's up to YOU to decide if you want compromise the effectiveness by using Cymbalta/duloxetine. It's contraindicated but, as always, the choice is yours.
0 -
Elimar - I must have missed your previous post re above. I am changing onco anyway and hope I wind up with one who is better informed. You would think a doctor at MD Anderson would have been aware of drug contraindications. Another instance - this same oncologist ran me through tests because of headaches and shortness of breath: brain scan, chest xray and every pulmonary test imaginable (of course at my expense). When I stopped taking effexor (that I was taking for hot flashes and it didn't help) these symptoms gradually went away so I looked up known side effects, breathing issues and headaches were listed. All that money spent on expensive tests when the onco should have known. Thanks for bringing up this issue. It just goes to show that we have to inform ourselves - can't even trust our doctors to know what's best for us.
0 -
Elimar, I'm TN so the tamoxifen risk does not apply. I took tamoxifen for my first breast cancer years ago, but I think the possible benefits of cymbalta are worth talking about. I don't think any of us claim to be experts, just sharing our experience. Hopefully before taking any med, your dr will know the interactions ,then the pharmacist and ofcourse our own research. i've been on lyrica and though it helped, not enough. I've been on cymbalta a week and notice a marked difference. Just sharing my 2 cents.
0 -
In my own experience, Cymbalta was superior to both gabapentin and Effexor for fibromyalgia pain. I have not used it for CIPN.
Likewise, in my own experience, I had a doc prescribe Cymbalta for me when he knew I was on Tamoxifen, only to have me discontinue when I brought the interaction to his attention. Duh, oopsy! That is an experience I must share and share again, and it does not surprise me at all when others post similar about their own docs.
A great number of women here on BCO do take Tamoxifen so I would never recommend Cymbalta without including the caveat about the interaction between the two. How big of a deal is it? I don't know. I'm no expert. But I would like women to have the "awareness." PASS IT ON.
0 -
My MO referred me to a pharmacist for "medicine reconciliation." LOL.
I gave the pharmacist a list of EVERYTHING I take, and then they let me know what interfered with the T, what is not ok for ES+, etc.
I am not saying that I agree with everything they pointed out. However, you'd think this would be standard care for all.
0 -
Bosum - thanks for posting your update but soooo sorry to hear things are worse. Interestingly enough my fingers have started to go numb again when I thought the only CIPN left was in my feet. I have about decided that the cold weather definitely effects neuropathy just like it does arthritis.
My Mo agreed to leave my Vit D supplement at 5000 IU and I'm still taking B6 and B12. I've considered going back to the neurologist I met with when I first finished chemo, but since I don't have serious pain - just numbness - I doubt there's much she can do.
I agree - I hope everyone will continue to post from time to time so we can see what others are dealing with - especially since most MO's don't seem to think this is a serious side effect.
0 -
i only had bad neuropathy in my feet. Numb, dull aches, shhotin electric shock pains that took my breath away, distorted position in space from feet (proprioception). Fell and broke a rib last May. My eet feel like blocks of wood if i sit too long
21 months later the shooting pains are less and.25 % of numbness gone. What i do get is morenfibromyalgia symptoms With generalized stiffness and developed carpal tunnel. Thinking this may be SE from AI drying out connective tissues and pressing on nerves as indirect (shortening) myofascial release in upper arm helped thumb pain
0 -
BosomBlues,
I am sorry to hear that you aren't feeling well. I, too, am frustrated by the cost of supplements. I don't have a lot of expertise to offer. I've heard that acupuncture can be helpful, and in some areas "community acupuncture" can be found with sliding scale fees.
Tomorrow is my "big" neurology eval. Let's see what the experts have to say at one of the supposed top neurological centersin the US.
I am hoping to know what symptoms can be attributed to the chemo, which to the Tamoxifen, and what can be linked to PTSD.
Everyone~ I know that I have explained this on a few of the threads here. Sorry for the duplicate posts. I just don't know what is causing what and it's driving me insane!
0 -
gardengypsy - please be sure to let us know about your appointment. Hope you get some positive ideas.
0 -
blownaway...so sorry you are suffering. I have an autoimmune polyneuropathy with symptoms very similar to yours. I have also found that Cymbalta is the best drug for it. Just wanted to share with you that could could take a lot more than 30 mg if you needed to. Actually 30 mg is a very small dose. Hope that helps! Anything to improve our QOL!
0 -
Although I now understand that women on Tamoxifen should not take cymbalta since it reduces the efficacy of Tamoxifen, I am still taking both and seeing new onco soon. I plan to ask if a stronger dosage of Tamoxifen might offset the effects of cymbalta on tamoxifen.
0 -
MinusTwo and Bosum~
Lol. THOUGHT I was seeing a neurologist. Turned out this was just a testing day: memory, processing speed, etc. Brutal. Except the long-term memory assessment, I am pretty sure I failed every test.
Results in 3 weeks. Follow up soon.
8 hour RT drive plus 3 hours of interviews and testing. I am cooked.
0 -
Wow garden - what a day. Well, we'll wait with you for the results in 3 weeks.
Bosum - I did go to a neurologist when I first started having symptoms before the 4th chemo. She put me on B-12 & B-6. i don't see that is has made any difference. Sigh.
0 -
Bosum- Yes, I got issues!! Besides the neuropathy, I have had unbelievable brain fog. My onc therapist says that I am in a pain and exhaustion cycle.
That makes sense to me.
Next up: Appointment with an osteopath = wholistic musculoskeletal treatment.
0 -
I, too, have been having bad days. These are days when I feel the dull, cold ache in my feet. Like MinusTwo, I think it is the cold weather doing it. I seem to do much better in the summer. My feet lead more active lives in summer too, so I feel that I just have better circulation happening in the summertime. On top of that, I can feel my fibromyalgia kicking in, which for me is a disturbing vibrate-y feeling in both hands and feet. Yes, I can separate the feelings of the two conditions, but together, it just adds up to BAD.
gardengypsy, I am interested in what your acclaimed neurologist has to say about it all. Good Luck at that appt. and I'll watch for your news.
BosumBlues, Since many diabetics get neuropathy, it certainly may be compounding your CIPN problem if your blood sugar is not under control. Isn't there an alternative to Metformin that would have less adverse effects? (But I am in agreement that almost every drug seems to come with some kind of negative effect.) I was told by an ICU nurse once that all meds are a "balancing act" and since then, I just cannot get that phrase out of my mind.
Speaking of balancing act...blownaway, I do not know if taking more Tamox would be the answer. If you are at 20 mg. of Tamox a day, I don't think a doc would give more, since that is the "studied" dosage, and it is difficult and possibly unwise to go into uncharted territory on taking more of it. You have to realize that although there is a known interaction between Cymbalta and Tamox., it's not like there has been a study of women taking both, to see to what degree the effectiveness of Tamox is lowered. A study like that cannot ethically be done, because the result might be a certain percentage getting a BC recurrence. A study could not allow that negative outcome. Because there is not actual study data to point to, some doctors will feel "comfortable" allowing you to take both. This is just another example of how we, knowingly or unknowingly, guinea pig ourselves.
0 -
Elimar - I saw my new PCP today who was shocked that an oncologist prescribed Cymbalta. She said "Start weaning yourself off it and we will try bumping up the Gabapentin (that I had wean down on). I was once again "blownaway" at the negligence - especially an oncologist at the most well known cancer center in the world! I'm in Houston, hint, hint..... Thank you for your input.
0 -
BB, all I will say is that is that it does sound like the nerves in your legs are working overtime. The vibration IS nerves, but I don't know if that is fibromyalgia or CIPN branching out or something else. Supposedly FM has trigger points of pain, but not everyone has that classic presentation, and I don't have it. I got stuck with the FM label when I failed the tests for 5-6 other things. There is no real test for FM. You know, it is something of an umbrella term, for people who have unexplained widespread pain. I never went on message boards for it, but it seems like a lot of people (women!) have it. Strangely, when I went thru' chemo, and for about a year afterward, my FM seemed gone, but it has gradually returned. I wondered if my chemo steroids had made the difference, but then I wonder about a lot of stuff that no one really has answers for. Because of the FM, I was very wary about CIPN going into chemo. I thought I was being very conservative about how much chemo I got, but I still ended up getting enough (too much) to leave me with the CIPN.
I know my CIPN symptoms as not as bad a some who post here, but I am still very, very frustrated with my so-called "new normal" of numb and, during the Winter, achy feet. My first 2 years PFC, I remarked to family members about every day how abnormal my feet felt. Oh yes, they enjoyed that, I'm sure. Now, I'm "better" so I might only remark once or twice a week. The sad thing is that I can actually remember how my REAL feet used to feel.
[p.s. As I wrote before, the FM is what I tried Cymbalta for. It did work pretty good for the FM, but I did not care for the lethargy, weight gain, or orthostatic hypotension (the "I stood up too quick" low blood pressure light-headedness) that went along with it.]
-------------
Blownaway, Was writing as you posted. Well, now you may forgive my nagging, I hope. Yes, Cymbalta really is contraindicated when on Tamox. because they don't really know how many could up their risk...and I knew I just did not want it to be me. Again, because I am a dyed-in-the-wool cynic, I am NOT surprised at all your MO had you on both. Sheesh, and double sheesh!
0 -
BlownAway....Hmmm, yes I sympathize. In the Houston Medical Center I can only find one hospital/doc that will do a blood draw from my foot so I don't further compromise the LE in my arms. Supposedly one of the three largest & best darn med centers in the US. Eeek!! Glad your new PCP is on the ball.
0 -
Bosum~ I am 8 months out from chemo. It has gotten worse since I started teaching again.
elimar- The neuro appointment focused on the brain fog - memory and processing speed, etc. They didn't have time to assess the CIPN because I was so wiped out.
My roommate has diabetes and has terrible neuropathy...He refuses to take the Gabapentin because it creates serious brain fog.
All these drugs and treatment have really hurt my cognition. A university research pharmacist told my partner that it's not the life-saving drug that did this to us; it's the "delivery" drugs. Delivery drugs are her specialty area..
I am pretty discouraged and tired. Hang in there with me, ladies!
0 -
gardengypsy, I know you said this appointment was for cognitive impairment. When do you get those results? But I am waiting to hear on the CIPN when you go for that.
I think I got a tiny touch of brain fog while on my chemo, but it cleared out when chemo was done. I found rigorous brain activities--like micro-managing my oncology team--helped to keep my brain alert. Just kidding! (Or am I?)
0 -
elimar~ Results and reccomendations in 3 weeks. It takes them a while to write a report, consult and create a DX, etc.
Continue to give your onc team hell, just for me. I was so frustrated by my original team that I ended up getting my treatment via my 2nd opinion - 4.5 hours away! There were many long, difficult trips throughout the past 13 months.
0 -
Blownaway~ Now I understand your choice of a pseudonym! Perfect.
0 -
Elimar - you're absolutely correct. I keep my brain working managing my doc teams too. If I didn't, who else would care? I'm going to take the month of March off from docs completely. No appointments & no communication with docs. That will be some kind of treat!!
0 -
Bosum - I'll be interested to see what you decide about the magnesium. What is the dose? It's on my list to discuss with my PCP when I go in later this spring.
0 -
HI everyone,
I don't have neuropathy (as of now) but I start Taxotere tomorrow....did any of you do anything during treatment to try to prevent neuropathy? I"m so afraid to have long term damage....did you ice your hands/feet? suck on ice chips, do the dark nail polish, vitamins or something I should start etc etc
I finished my AC 3 weeks ago...and only had tingling in my feet for one day, then it went away....Any advice for someone just starting out on taxotere?
I hope those of you suffering with this get some relief and improvement soon!! praying for you!
Thanks!
0 -
My onco would not let me use ice. He said you are not to protect any part of your body from these drugs. I was supposed to have 6 rounds of TCH then a full year of just H. After the first 4 rounds, my chemo days were over due to not just labs but my feet had burned up, fingernails were falling off, eyes were streaming, nose bleeding, scared to leave the house due to uncontollable diarrhea, and that's just to name a few. My understanding is there are drugs just a good as taxotere but you have to have your infusions closer than every 3 weeks. They tend to use taxotere for convenience sake. If I had it to do all over again......I would play a larger role in determing my treatment plan. I was just unaware that there were other options. I have major CIPN now that affects my entire body, don't even have a sense of smell or taste any more, plus all over nerve pain - hell, I don't mind the numb fingers/toes.
0
