Vent about Permanent Neuropathy

I heard back from MO nurse today, she left a vm saying it's not neuropathy from chemo at least.

I'm beyond frustrated and unsure of where to turn with these issues. I'm taking a mental break from it today.

Bosum is right. You need to get tested & discuss this with your doc. Too much Vit D can cause serious problems. I get my Vit D checked with my other bloodwork every 6 months. And now i can not get my Prolia shot w/o a Vit D number.

The same for B6 and B12. My neurologist said too much can cause symptoms like neuropathy rather than helping.

The hospital here shows standard range as 30.0 to 150.0 ng/ml on the Vit D, 25-hydroxy test. Mine is 51 after taking 5000 iu supplement for almost a year.

Bosum - you are probably right. So much of that stuff that I researched so diligently during & after treatment, I gave up worrying about once I passed the 2 year mark. That's the original date I heard for gradual improvement. Then I heard 3 years. Well I've just past 3 years since chemo so I expect I can stop hoping for improvement.

Gwenny~ You have some good suggestions there. I believe that the Gabapentin is creating a lot of cognitive problems and it doesn't work that great. Is the Cymbalta easier to tolerate?

On my way to get the Adidas sandals.

Blownaway may I ask what miligrams are you on Cymbalta and how long did it take to go into effect?

Yes, Tang&Chris - all of the above. Different individuals have different pains. Some unlucky folks have all of the above at different times.

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:

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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

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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.

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.

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.

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

gardengypsy - please be sure to let us know about your appointment. Hope you get some positive ideas.

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.

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.

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.

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.]

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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!