BC and Pernicious Anemia

cfdr
cfdr Member Posts: 549
edited June 2014 in Breast Cancer with Another Diagnosis or Comorbidity

Anyone else her getting B12 shots for pernicious anemia? I was diagnosed 5 months after the end of chemo. Since B12 deficiency causes similar side effects (fatigue and cognitive dysfunction) it's been difficult for me to tell whether I'm have cancer-related issues or whether my PA is not well controlled under the normal protocol of 1000mcg cyanocobalamin injection each month. I do know that my fatigue, focus and mood are even worse in the week leading up to my injection.

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  • LW0919
    LW0919 Member Posts: 196
    edited September 2013

    I was diagnosed with a B12 deficiency 2 months before I was diagnosed with bc. I was prescribed weekly injections for a month then monthly injections after that. I stopped giving them during chemo, not sure why I guess I just couldn't stand one more thing. I've started them again and have noticed I'm having malabsorption issues even tough I started the injections again. I till have fatigue and muscle soreness all over, like you I'm not sure if its related to residual chemo, radiation or pernicious anemia. I'm going to check with my gp to have more blood tests.

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  • cfdr
    cfdr Member Posts: 549
    edited September 2013

    Hi LW,

    I got me GP to give me shots every two weeks instead of monthly. I was really crashing before the shot each month. I still crash even with them twice as frequent, but not as badly. She was very skeptical because she says that the once a month should be fine. But I was reading that the serum B12 test is not always accurate, and also that it's possible to use up the B12 more quickly if you are physically active. That could explain why exercise makes my fatigue worse instead of better.

    Where are you in NC? I'm in Durham.

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  • LW0919
    LW0919 Member Posts: 196
    edited September 2013

    I have an aversion to needles but wanted one less reason to ave to the Dr so I started doing them myself. I'm going to see my GP in a couple of weeks because I'm not absorbing/digesting certain foods properly. Beets, spinach and broccoli so far all co e out the same color they go in. It's kind of unnerving since it didnt start getting this bad until after chemo. Do you have any issues with that? By the way, I'm just outside of Winston-Salem in Walkertown.

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  • cfdr
    cfdr Member Posts: 549
    edited September 2013

    No digestion issues...even during chemo my GI tract wasn't too bad. The PA was diagnosed 5 months after chemo, but I suspect I had it before. My fatigue issues are significantly worse post-chemo, but I did have bouts of fatigue prior to treatment.

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  • neverready
    neverready Member Posts: 37
    edited January 2014

     I have had cancer twice, with a possible 3x growing right where I just had one mastectomy(going to have a biopsy of that area when they go in to take the other breast and do reconstruction)

    I also have pernicious anemia, as well as treating another issue with a prescription-deliberate'mega-dose'  methyl-b12 shots every 3 days. Ideally my regimen would be daily injections but I'm unable to give them to myself and its not possible to arrange  for assistance for closer than 3 day intervals.

    My oncologist says no, but I still worry that maybe somehow my b-12 is feeding my cancer. I have theories that my cancer may be feasting on nutrients like my b12 or some others, worry it may be the cause of my other deficiencies (iron anemia, vitamin D, folic acid, etc)

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited March 2014

    This is an interesting topic. Eleven years ago I had a gastric bypass and was completely healthy up until two years ago when tests showed anemia. In spite of oral carbonyl elemental iron prescribed by several doctors in escalating, I have not been able to get my numbers up. When I went in for my bilateral mastectomy last August, they said I was at 7. The day after surgery I had a transfusion of 2 units of blood but got up to only an 11 at the next test. My Vitamin D is very low as well to I've been going to an Endocrinologist. It's normal for bypass patients to have B12 issues, so I've been giving myself B12 shots every other week. I feel good when my B12 s about 800 but can really tell when it gets down to below 400. I'm exhausted!

    When I saw the Oncologist (who is also a Hemotologist) for the first time, she said to quit messing around with oral iron because it rarely works in people who have chronic anemia. Instead, she ordered an iron infusion. (4 hours...easy...no side effects except ferocious gas afterwards.) The plan was to do them every three months, but now, four months later, the numbers are down but not as much as she expected, so we're on the right track.

    One thing I wanted to mention to you is Thalessemia Trait. The hemotologist just diagnosed me with it. People with this have blood cells that are smaller than normal and patients have a greater chance of being misdiagnosed with a more serious kind of anemia then they really have. The small blood cells are misinterpreted by the lab. Iron supplements have no effect on anemia in this situation. Some people have full blown Thalessemia, not the trait. Sickle Cell Anemia is one of the kinds of full Thalessemia. Another kind is found in newborns and is fatal. Since I don't have either one of those, I have either Alpha Trait or Beta Trait. I just had a test last week to find out which. I need to research after that to find out what other problems I can look forward to depending on A or B. Apparently some people with the trait have no symptoms of anything else the rest of their lives. Still, I want to know the possibilities. One last interesting fact: Alpha Trait is found in people whose heritage is Southeast Asian, Indian, Chinese, and Philippino. Beta Trait is found in people with Greek, Italian, Middle Eastern, and African heeritage. I'm Dutch, Irish, Scottish, and German. Singing ????

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  • cfdr
    cfdr Member Posts: 549
    edited March 2014

    I don't have thessalemia symptoms, but I definitely have pernicious anemia (no intrinsic factor). The monthly shots seem to be doing the trick now, although I also take 500 methyl sublinguals every day just in case (in Canada, the normal PA protocols is megadoses of oral B12 even with no intrinsic factor, so I figure it's worth a try). I started taking iron and folic acid (both oral) in the fall, and they seem to help boost things. I'm still getting the shots at my doctor, but next month my husband is going to give a try giving my injection (with a nurse's supervision, of course!).

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited March 2014


    I wasn't dx with Pernicious Anemia, but I was given an iron transfusion the day after my firs chemo treatment and I am now getting b12 shots as well. I've always been borderline anemic, but this was the first I'd heard about the low b12. I had my first b12 shot last week, but to be honest I dont know if it really is helping because I am currently in the throws of my 2nd round of TAC. I guess they figure it would be much worse if I didn't have the added shots and transfusion.

    I asked how I became so deficient, and I was never really given a "pat" answer. I mostly told it could be just due to all the surgeries I had in the past couple of months.

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited March 2014

    Giving yourself the B12 shots is a piece of cake. Ask for insulin syringes. The needle is VERY short and VERY thin which is much less intimidating and seriously, you get used to it and barely feel it. It's about like an eyebrow hair - super thin and short. Don't put it in your arm...much too awkward. I usually put it in my upper thigh or in the chubby part just outside my hipbone. It is not sore later. The little vial with the B12 always seems to hold more than the syringe can hold so don't worry if you can't draw it all into the syringe.

    My husband, who doesn't cringe at the sight of anything and has taken care of incisions, drains, and wounds that won't heal, puts giving me a B12 shot at the bottom of the list of things he would do for me. No matter how many times I tell him it doesn't hurt, he just can't get past feeling he will hurt me if he gives me the injection. He disappears quickly when I get out the B12 vial. Goodness, he delivered our 3rd child himself but can't look while I take about 5 seconds to give myself a shot? Some people have deep-seated issues and logic doesn't work. If that's you, don't force yourself to do it.

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  • cfdr
    cfdr Member Posts: 549
    edited March 2014

    My husband is willing to give it a try. My doctor gave us some needles, they are for intramuscular injections so I don't know if that's the same as an insulin needle. Her nurse demonstrated the technique to my husband, but when he does it the first time we're having a friend who's a nurse supervise him. I was actually surprised that he is willing to give it a try...the first time I suggested it he said "no way", but I asked again 6 months later and he said "Sure!" so he must have gotten used to the idea in the interim.

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