Vent about Permanent Neuropathy
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Blownaway, That's news to me. Since it has been brought up so much here, and since there is the effectiveness of Tamoxifen is in question, do you think you could find out what those two different types are?
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Hi Ladies, I've been reading through this thread in hopes of helping me come to a decision to stop Taxol. You have, and are all going through so much! I've done 9 of 12 and I am experiencing neuropathy in my feet, legs and a bit in my hands, as well as my mouth, tongue, and jaw area. Mostly feet and legs with pain and numbness almost to my knees...it's making me very restless and anxious. My dosage was reduced to 80% for the last 2 infusions, but symptoms continue to increase. I feel like I should stop, or at most do 1 more infusion but looking for any advice on what to do. I've done 4 AC before as well. I do have lymph node involvement, but I am have a ALND dissection after chemo, then radiation. Quality of life after this is important to me and I am 49 with a 9 year old. I know some people think I need to finish the treatment and do all I can, but ultimately I believe there is a balance in there. My MO has told me it is up to me when/if to stop.
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Thank you, maryna8. No, I have not had Chemotherapy. My autoimmunity causes the chemistry problem which causes demyelination. The practical effects are like those from MS, but from a different etiology. I have written on the RIBP thread, too, because of having some commonality with their experience.
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Daisy - can you go to My Profile and post your diagnosis and treatment? With out knowing more about your original diagnosis, stage, grade, hormone status, HER2 status, etc. it's hard to answer. Did you have a recurrence? Are you on a second round of neo-adjuvant chemo because you didn't have pCR? Have you had any surgery yet?
Bosum is right, it's a difficult decision. A good percentage of women do get 'better' once chemo is over, but as you can see by this thread - not all of us by any means.
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HI, Daisy,
I had neuropathy symptoms after my first treatment with Taxotere, and when I complained more than once the doc started to shrink my dose. He told me the symptoms wouldn't last long, but they did. Among the women I know who had chemo for breast cancer, several of them have neuropathy, but only in their feet and it doesn't bother them too much, except for one who has it more severely There is just no telling with this condition, I wish I could help you with your decision. You will have to try to figure out how much you think more chemo will help you avoid more cancer, versus possibly worsening your neuropathy. This is a tough decision, but you will do the right thing. Remember, there are no guarantees no matter how you decide.
Bless you, Daisy, good luck, come back and let us know what you decide and how you are doing.
Mary
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Bosum~ I am feeling sadness around you not seeing the old friend..Are you otherwise socializing? It's really important that we don't get housebound and depressed.
Yes. Keep up as much movement as you can. Like you, my legs are terribly weak. I went to my first "Steps to Wellness" exercise class. The PTs and docs are extremely skilled and empathetic.
I know I may have asked you this (I have a tough time following these threads), but have you done PT?
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My duloxetine has the initials HCL and CPEP after the name. Don't know if this helps. My MO did not say what any other kind of duloxetine might be.
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Hi Daisy,
As you'll note, this is my first post but like you I have been reading this thread very carefully.
I felt compelled to reply because my situation was similar to yours . After the ninth infusion of Taxol I was also in the position of having to choose whether to continue treatment. My symptoms started in both my hands and my feet after the seventh dose and by the eighth dose I was dropping things and spilling coffee on myself. I was also concerned I was going to fall as my feet were becoming increasingly numb. At this point I frantically called the nurse and she relayed my concerns to my medical oncologist. For my ninth infusion my dose was reduced to 80% and then I was given a week off treatment. At my next appointment with my medical oncologist, when he heard that my symptoms had not improved even after the break and the reduced dose ,he suggested that I stop treatment. He felt that the benefit risk ratio didn't support continued treatment. I had already made up my mind that I was going to discontinue treatment so I was pleased that he suggested it first.
I'm not suggesting that one doctor's approach is better or right and as others have noted, this has to be your own decision. What helped me make my decision was the certainty that should my cancer metastasize in the future I would not second -guess myself and blame it on the fact that I didn't finish chemo treatment. If you are not certain you'd feel the same, that might factor into your decision. I have no way of knowing whether I made the correct decision or not in terms of minimizing my risk of cancer only that I can comfortably live with my decision
Six months post chemo and Im taking lyrica and occasional Tylenol Three to control the symptoms. It has perhaps improved by about 10 perecent (no more bone pain at least). Still hoping for complete resolution or at least a lot more improvement.
Thanks to everyone who has contributed to this thread. I've learned a lot and even though I've just been lurking up until now, reading everyone's' posts snd support of each other has been great.
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Blownaway, The duloxetine you take uses the same CYP2D6 liver enzyme that is needed to metabolize your Tamoxifen. Check with your doctor and let me know if there is a second kind of duloxetine that would not use that enzyme. I doubt there is. Look, for the amount of CIPN pain you have, your doctor probably feels that the benefit vs. risk (in your case, with your DX) is worth it.
That is not to say the risk does not exist. What I remember is that the chance for recurrence was about 2% higher. That's not a huge risk and it may actually be less risky given your early stage of cancer; but, conversely, it could be a higher risk in someone else with a more aggressive cancer DX. This is why the current precaution is against using dulotextine (Cymbalta) and Tamoxifen together.
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HI to all,
I'm afraid I got a bit behind in posts, was away a couple of days. Ggypsy, I am going to start exercising my knee again even though it still hurts, it is apparently a soft tissue strain of some kind. I will be doing a month of PT, and then rechecked.
Bosom, sometimes I find even when I don't feel like I want to go out, if I go ahead and do go out it is beneficial. Socializing takes my mind off my problems to a degree, I just have to be careful not to stay up too late or the next day is a long, tired day. And sometimes that is tolerable if I know I can get a good night's sleep the next night. I find if I spend too much time alone my mind can go to scary places. And yes, neurologists seem to be very busy doctors, it takes months to get in to see one around here too. I saw mine twice since chemo ended, but he had nothing new to tell me the second time.
Icietla, I am very glad you did not have to have chemo, I think that would have only added to your problems.
What does RIBP stand for, in the thread you mentioned posting on?
Blownaway, if your MO is okay with the Cymbalta, she probably figures the risk of it hampering the Tamoxifen effect is worth it if you are getting such good results from using it. I did not have radiation after chemo, my first MO said I didn't need it. He retired and the radiation doc thought I should have it, but then said, that since I was having so much arm and shoulder pain that the benefits didn't outweigh the risk of further pain. We didn't know what it was at the time, turned out to be a torn rotator cuff and bicep muscle combined with the nerve pain causing the effect. At times I wonder if we did the right thing, but it doesn't keep me up at night. After chemo I was about at the end of my rope, and was relieved to be finished. Ultimately, the decision is yours, and you will do the right thing for you.
Joy66, loved your quote, "you have to be in your right mind to be sick!" It is certainly a lot to keep up with, especially when one is groggy with drugs and medical staff make mistakes and try to pass it off. Sometimes I feel they don't really listen, they come into a room with a preconceived idea of what you will be talking about, and if they ever get the idea that you are a whiner they are even less likely to listen. I am talking about myself here, I feel as if I have fallen into that camp with my GP now, he says to call him with any question or problem, but when I do, I get the impression that he thinks I am just complaining and my problems aren't real. I know the Herceptin treatment is a long one, do you still have several months of it to go? Adriamycin is another cancer drug that can cause heart issues, I'm glad you didn't have to have that as well, and I hope you get through it all unscathed by any heart issues!
Urge-to-Wander, I'm glad you found some support here and added your voice, I hope your neuropathy keeps improving as you move further away from cancer treatment!
Mary
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Maryna -- I suppose I was as mentally prepared for Chemo as anyone might be, soon after the Radiologist spoke with me. Later I would learn that the diseased margin from my excisional biopsy had left some of my very fragile tumor in a blood-filled cavity with blood sloshing against it -- presumably eroding it -- for weeks. I am sure you can imagine the picture my mind draws -- a soup of cancer in my bloodstream. On the one hand, I wish there were some Chemo well-suited for mine, but on the other hand, there is the maxim Be Careful What You Wish For.
I had already been generally hiding my hair (for times away from home) for some fifteen years, so many strangers to me have supposed (assumed) that I had hair loss from cancer. I have lost about two-thirds of my scalp hair over the last year, but because I still hide it as before, nobody who knows me can draw a clue from that. I would never consider going to the Cancer Center without having my hair hidden anyway.
I have been continuously very tired since age eleven, with some periods of much more tiredness. For the last several years before my cancer made itself known, I was getting increasingly tired, often needing more than twenty hours of sleep a day. I have been appreciably less tired since the first surgery removed most of my tumor. My being accustomed to the background tiredness I had had for so long anyway camouflaged the cancer tiredness, so I did not think it was anything remarkable as the cancer kept increasing my tiredness.
RIBP is Radiation-Induced Brachial Plexopathy. It has a thread in the Lymphedema forum section. It is another devastating consequence of cancer treatment. As with this thread, my condition does not have the same cause, but there is some commonality in our experience. My posts there are on this page linked here.
https://community.breastcancer.org/forum/64/topics/698235?page=23
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Mary,
I'm losing count with the Herceptin infusions. I should be done with the Herceptin around the December timeframe after having infusions about every 3 weeks. I think the total was 17 in the beginning. It's just a way of life to me now with the anemia, neutropenia, achiness, and peripheral neuropathy. It seems like it's never going to end. I won't know how to act when it's over. The nurses keep telling me that the peripheral neuropathy is residual from the taxotere. Oh well. Hopefully, my Hereditary Spastic Paraplegia won't get worse because of all this. Since the peripheral neuropathy is twice as bad now, it seems like that is exactly what will happen. I'm getting to the end point where about all of my questions have been answered, whether I like them or not, so I will just have to deal. I had the Adriamycin in 2002 and never had echocardiograms like with Herceptin. They may have not even acknowledged it back then. There I go wondering too much again. My heart remains strong though, as was confirmed yesterday. It's a wonder.
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BosumBlues, Maryna8, Minus Two, Urge-to-Wander
I thank you all for your input on my decision about continuing with the Taxol with the neuropathy I've been having! After a lot of contemplating, reading online and then reading your posts I cried. I cried because I knew I should not be continuing the Taxol,,,,kind of tears of relief with coming to a decision. I called the MO office and let them know my symptoms, and without saying I was not going to continue the nurse called back to tell me MO had said to stop treatment, he does not want me having permanent damage. I cried again lol,,,,happy tears and confirmation this is the right decision for me. I have had the 4 A/C and 9 Taxol, that's still a lot of chemo, and I'm grudgingly grateful for it. I hope I am now able to recover from the damage that has already been done and live an active life when all this treatment is over. For me, my inner voice was telling me to stop, but was getting drowned out by everyone else's opinions and fears. I'm totally at peace with this now. Thanks again. : )
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Daisy - so glad you've resolved the problem. And that the doc felt the same way before you even brought up quitting. Good luck in getting the existing side effects resolved.
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HI, Icietla,
You have had a lot of odd happenings on your way through all this, what do you think caused your hair loss? Looks like Femara accomplishes the same thing as the Tamoxifen, controlling the estrogen. Are you still on the Femara? I didn't have radiation, and wasn't really aware it could also cause so much trouble, as in the RIBP; the people I knew having trouble with it mostly had skin damage, which reversed itself over time. Do you think the cancer you had was very slow-growing? Surely it wasn't with you since age 11, but I don't know. I was just wondering where your long-standing fatigue came from.
It sounds like you have had good docs, to help you figure out all this stuff. It's amazing all the things that can happen to us, it's probably a good thing you didn't have to have chemo, it would probably have exaggerated all the things that are already bothering you.
Happy Sunday, Mary
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HI, Joy,
It must be like a long marathon going through the H treatments, at least the docs say it is quite a successful fix. Sure would be nice to shorten the regime, maybe someday.
I'm sure too, that the CIPN came from the Taxotere, before treatment I looked over the paperwork and it said it was a possible side effect. Turned out to be very possible indeed!
I'm so glad you have a strong heart, we do have to thankful for our blessings! I know a couple of women who had to the fibrillators implanted in their chests because of the Adriamycin, so it's good to have a good heart to start with. And I too hope your HSP doesn't get worse!
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Hi, Daisy,
So glad the decision has been made and you can move on without more chemo, those hanging decisions are the worst. Especially when they are made out to be life and death decisions! I know a lady who was getting all 3 of her chemo drugs in 6 rounds, she skipped the last one because she was so ill. The doc then told her after she had agonized over stopping, that the last one was just insurance anyway! So that made it sound as if they schedule in an extra dose just to make sure. Sometimes those extra doses are just too much.
I hope you can get over all the side effects soon, take care of yourself, Daisy!
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I've been away from this thread for ages. I've had CIPN since my second taxol/herceptin treatment back in 2008. I have arthritic knees (one replaced), and this, combined with my almost completely numb feet, has resulted in mobility issues. I've seen a parade of specialists (neuro-oncologist, pain medicine specialist, physiatrist, physical therapist) with very little, if any, improvement over the years.
I have noticed a slight improvement with gabapentin. I'm now taking 1800 mg. per day. I take three extended-release tabs at night, and while my feet are still numb and continue to bother me if I exercise or walk for any length of time, I have less discomfort at the end of the day. It's a small improvement, but the first I've noticed in nine years of dealing with this.
This note feels very trivial in comparison with what so many of you are dealing with on these pages. I have nothing but the deepest sympathy for those of you wrestling with those difficult decisions about stopping treatment. All I can offer is that nine years post treatment I feel well and part of life, in spite of my neuropathy. (I was diagnosed with a form of Hodgkins lymphoma in 2015, and the chemo for that was much heavier than my taxol/herceptin regimen.)
Wishing you all the strength to get through all this and look forward to better days!
Ann
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Ann~ Thank you for your note of positivity. I see my life 9 years from now as similar to yours: The neuropathy will linger, I will continue taking Gabapentin, and I will appreciate my one and only life as best I can.
I just had a one-month relief period. There was little intense pain. I wonder if my new exercise program intensified the pain...I have also restarted Tamoxifen. I have never head this before, but I'll bet T intensifies CIPN.
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Hi gardengypsy,
Exercise always, always intensifies the pain/discomfort in my feet. It's a crazy tradeoff, and one of the reasons I'm so glad to see at least some relief from the gabapentin.
I forgot to mention that I'm seeing a podiatrist for orthotics. I'm on my fourth visit and we still haven't gotten them right, but in part that's due to other issues--flat feet, a discrepancy in leg length, the bad knees. But the cushioning the orthotics provide (in Brooks sneakers, new to me and wonderful) is a huge bonus for my feet.
Yes, nine years out I still deal with this and have some real limitations, but I focus on my overall good health and am grateful for the small army of medical people who support me in this.
I have no idea about Tamoxifen and CIPN. I took Femara for five years and hoped to get some relief when I stopped, but no such luck.
BUT everyone's different, and your MO may have some suggestions. Good luck!
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Hey Gardengypsy, September,
I wanted to share that I also had to stop my exercise program because of intense knee pain after some moves I shouldn't have been doing, I did a lot of resting and it was some better; but I have a trip coming up so wanted to see if I could have a cortisone shot to see if it could help. Saw an ortho doc, he put me on a month of physical therapy therapy first, I did 2 sessions and wow, couldn't take it, too painful. He says osteoarthritis, I suspect aided and abetted by CIPN. I keep trying!! And so far keep getting shot down.
Hi, September, sorry didn't acknowledge you sooner. Been rather busy feeling sorry for myself. I have gone from Pre-cancer/chemo very active woman to a post cancer/chemo rather limited woman, who doesn't know what's going to happen next! I am sorry for your pain, and I share it, and I wish for some relief for all of us. My CIPN is bearable in feet; my legs give me fits with weakness and cramping and now knee pain, something I have never had before. Has anyone had the steroid shots in knee and if so, does it help??
Mary
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September~ Yes, it's a trade off and I am going to try to keep up an exercise regime. Do you have any SEs from the Gabapentin??
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Hey Bosom,
Thanks for info; I will proceed with caution. Ortho doc is saying knee is early osteoarthritis, I know I have that in my back and neck, and have had for a long time, but didn't think it would start so suddenly as it did in my knee. I have had a shot in cervical spine a few years ago that did no good, only caused more pain. Had a shot in back many years ago that did nothing. Do not have osteopenia yet, so will talk to doc with questions before I get shot if I do. I am going on a trip in May and am anxious to be in as good shape as possible for it.
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I had cortisone shots to my knees, both before and after my total knee replacement. I never had any relief from the shots, I'm sorry to say.
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I had cortisone shots to my knees, both before and after my total knee replacement. I never had any relief from the shots, I'm sorry to say.
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No, I'm happy to say I have no SEs from gabapentin. The only medication I had SEs from was Cymbalta, and those were so severe I had to discontinue it.
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September~ Good to hear. Many of us attribute our cognitive problems to the Gabapentin.
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BosumBlues, thank you for your nice welcome. I hope you are having much better days now.
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Apr 2, 2017 07:46AM maryna8 wrote:
HI, Icietla,
You have had a lot of odd happenings on your way through all this, what do you think caused your hair loss? Looks like Femara accomplishes the same thing as the Tamoxifen, controlling the estrogen. Are you still on the Femara? I didn't have radiation, and wasn't really aware it could also cause so much trouble, as in the RIBP; the people I knew having trouble with it mostly had skin damage, which reversed itself over time. Do you think the cancer you had was very slow-growing? Surely it wasn't with you since age 11, but I don't know. I was just wondering where your long-standing fatigue came from.
It sounds like you have had good docs, to help you figure out all this stuff. It's amazing all the things that can happen to us, it's probably a good thing you didn't have to have chemo, it would probably have exaggerated all the things that are already bothering you.
Happy Sunday, Mary
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Icietla writes:
Thank you, Mary. Yes, I am still on Letrozole. The hair loss may be from the Letrozole, maybe from having had four surgeries last year too. I also suffered severe mental distress for a long time after my first mastectomy surgery. Most of the shedding happened in late summer, earlier in the year than a typical fall seasonal shed.
I did not have Radiation treatment either. I was invited to post on the RIBP thread because of having experience with such limited arm use as many RIBP sufferers have while that complication is progressing. I also had no idea that Radiation treatment could be crippling.
Now I will try to make the tiredness, etc., stuff easier for you. [My apology if this is more confusing to you. I was trying to avoid that, see.] I have Subacute Combined Degeneration of the Spinal Cord secondary to Pernicious Anemia. My demyelination has been from other substances that, but for my deficiency, would have been kept in check. Since my PA diagnosis, in now-informed hindsight, so much stuff, mysterious for so long before, has made perfect sense in light of that PA diagnosis that apparently explains so much. It is now clear to me that I have had PA all my life – now I know that there have been associated symptoms and associated clues all through my life, from infancy [always very cold-natured, feeling much colder than others; always very prone to motion sickness; and distaste for meat-eating (in later childhood, I would learn, with difficulty, to eat some meat)]; and later, there would be my tiredness (to give you some idea, it has appeared to most others as Narcolepsy, otherwise as always exhausted, barely dragging myself along); angular cheilitis; gallbladder disease; cervical dysplasia recurring repeatedly over some fifteen years; vitiligo; menopause at age 40 (but I was nearly done with that at age 39); the neuro complications; and still more puzzle pieces/clues, including peculiar GI issues. I had two surgeries near age 11, and very soon after, I was whacked with this awful tiredness that has sometimes worsened, sometimes lessened a bit, but has never gone away. Now it is clear in hindsight that the Nitrous Oxide exposure in those surgeries had put me into clinical deficiency. In the early 1990s my tiredness became more extreme. My health kept declining and finally fell off a (figurative) cliff. By the time I was finally diagnosed in 2008, I had full-blown Anemia and I could hardly walk or talk. My difficulties with language and balance had started about ten years before. [It was not for a lack of my trying, all the failures to diagnose since my tiredness started in 1972. My leukocytosis, known and followed since 1985, has been confounding also.] Even with (usually) adequate treatment since a few years after my treatment started, I have still had Functional Deficiency. It has taken years of treatment and stepping up of my treatment to get my condition fairly stabilized and slowly improved since about 2011, I think (my calendar sense is especially poor as to recent years). Then, while my cancer was finally getting adequately fed so it could finally snowball at a Grade 1 rate, I was becoming increasingly more tired. After my excisional biopsy last year, I was suddenly appreciably less tired.
[This January my red cell count had got low and my red cells too large, and some other deficiency signs and symptoms were again getting worse, so my treatment rate had to be stepped up again. Now I am treated at eight times what would be standard maintenance treatment for an uncomplicated case.]
In short, I was very accustomed to being very-to-extremely tired. Increasing tiredness had been sneaking up on me for decades, especially since the early 1990s, and especially over the last several years before my cancer diagnosis. No, I do not suppose I had my cancer in childhood, but yes, there is good reason to believe my cancer would have been extraordinarily slow-growing -- that it was critically starved for B12 too, even through the first years of my (then still inadequate) treatment. Some thirty years of that cancer would not surprise me at all. Of course I cannot know (have certainty) for how long I had cancer, but my now-informed hindsight about the course of my tiredness, its cause, my under-treatment and then more tiring with (apparently) adequate treatment, then my cancer being discovered, my understanding that its growth would necessarily have long been severely retarded by the deficiency, and my feeling all the difference it had apparently made in contributing to my tiredness – all gives me this strong suspicion anyway.
------------------------See these__ One is a post from BCO__
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Apr 6, 2010 10:41AM jpann39 wrote:
Im glad I found this thread...
I was dx'd with Pernicious anemia in May of 2006 and started weekly shots of b12 as treatment, in Nov 2006 I was dx'd with Stage 2 breast cancer.
I also have the heartburn issue so take prescription prilosec. I asked my dr about the b12 absorbtion and she directed me to change from the daily pill form to a B Complex liquid. I will have a blood draw for counts in a couple of weeks but I feel that the liquid is actually working better than the pill form. I only take a shot every 3 months or so now that I have finally gotten the levels elevated.
I will see if I can find some of the research I did back then reguarding bc and b12. It was very interesting to me.
I cant say that I think B12 caused my breast cancer, but I do believe it made it grow fast enough that I found it easily. I found it very hard to believe at 2 cm lump could show up in the breast that I wash every day of my life over night. It just seemed to appear out of no where one day.
Take care all
Jule
'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-3-9295
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Breast cancer, too, apparently wants to consume B12__
http://cancerres.aacrjournals.org/content/76/4_Supplement/P5-05-06
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Having PA increases personal risk for numerous cancer types__
http://www.cghjournal.org/article/S1542-3565(15)00790-9/abstract?cc=y=
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! ! ! NB: But higher B12 levels are bad for persons with cancer__
https://www.ncbi.nlm.nih.gov/pubmed/26724465
http://jamanetwork.com/journals/jama/fullarticle/184898
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So as to my PA treatment, I am damned if I do and damned if I do not.
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i wonder if it was the B12 or the fact that your tumor was ILC. With ILC they hide while growing so are harder to detect. The doctor said mine myst have been there for years not registering on my annual mammos
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