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MDS Myelodysplastic syndromes

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  #1  
Old Mon Apr 14, 2008, 10:06 AM
junglegirlsue junglegirlsue is offline
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Talking Anyone get B12 injections?

Hello! My Mom has MDS. I give myself B12 injections and it is like I am a new person. I would love to give them to my Mom. Does anyone else take them. I am sure the doctor will say no. But if I could show him where others are helped from it maybe she could do it. Any thoughts?
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  #2  
Old Mon Apr 14, 2008, 11:07 AM
Marlene Marlene is offline
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Have they tested your Mom's serum B12, folate, iron, MMA and homocystine levels? If her levels are within the normal range, I doubt that they would prescribe B12 injections. However, in our experience, if B12 is less than 500, she probably could benefit from B12. The oral methlycolbamin form of B12 is just as effective as a B12 injection and you can get this over the counter. We use the Jarrow brand and order it from www.iherb.com. Many doctors do not know this and they also continue use reference ranges that are no longer supported by the broader international medical community. Meaning that they feel anything under 500 is OK even in the presence of symptoms....hematological and neurological symptoms. A standard b12 level does not reflect tissue levels of B12 that's why they should check her MMA and Homocycstine.

If you supplement with B12, be sure to take a B complex also. You need all the B vitamins especially folate. Supplementing with just one can mask other problems.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Mon Apr 14, 2008, 09:58 PM
Lillian Lillian is offline
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Junglegirlsue

Hi;
My I give my husband a B12 shot weekly. Prescribed by his Hemotologist. He said it will help keep the Red cells up..Ask your mothers doctor first But shoudn't be a problem.
Blessing
Lillian.
(Husband has MDS raeb-type2)
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  #4  
Old Tue Apr 15, 2008, 12:53 AM
Wendy Beltrami Wendy Beltrami is offline
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Methyl B-12

Grant also takes the methyl form of B-12 in a sublingual tablet. Jarrow and a couple other brands are available at Pharmaca if you happen to have one of those in your area.

Wendy/mom to Grant
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  #5  
Old Tue Apr 15, 2008, 01:09 PM
Marlene Marlene is offline
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Article on B12

This is a good article to have on hand suppporting the need for thorough testing of B12 and supports the efficacy of oral supplementation. It's from the American Academy of Family Physicians.

http://www.aafp.org/afp/20030301/979.html
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #6  
Old Fri Apr 18, 2008, 07:41 PM
Eileen Eileen is offline
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Smile b12

I`ve been getting b12 shots every month for 5 yrs .at the begining i did feel run down the week before & better after.Plus take b12 5000 mg sublingual daily.Don`t know if it`s helping but my Dr says it necessary .
good luck to you all
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Eileen.72,dxMDS 2007.currently on vidaza,procrit & neuprogen.
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  #7  
Old Sun Apr 20, 2008, 11:42 PM
Margie Margie is offline
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Anyone get B-12 Injections

I have taken a B-12 injection every 6 weeks or so for almost 2 years. I tested under 200 before I started the injections. The B-12 helps my vision and my ability to think. My doctor approves them, but always reminds me that he is happy to give them if I think they help me, but to please remember that they will not help my MDS.

Refractory amemia for 5 1/2 years. Transfusion dependent.
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  #8  
Old Mon Apr 21, 2008, 10:50 AM
Marlene Marlene is offline
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That is a low B12. It may not cure your MDS but a good solid B12 level is critical to the formation of blood and healing. So please don't stop them. As you have already seen, B12 has helped you and since you were deficient, if you stop, then I would venture to say you will become deficient again. Hopefully, you are taking ,in addition to B12, folate or a B-complex supplement.

Personally, I believe B12 can help any anemia. It may not cure it but it is beneficial. Too many docs do not recognize the value of good nutrition as part of the healing process. There are optimal levels one should have and for b12, it should be above 500. I don't understand why they don't see the value in fully assessing the nutitional status of patients and correct all imbalances to help with healing and to tolerate treatments better.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #9  
Old Mon Apr 21, 2008, 08:47 PM
Margie Margie is offline
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Anyone get B-12 injections?

I agree with you about the B-12 being needed. I think B-12 is needed by many older people even if they do not have problems with their blood. It would help with other problems. I have B-Complex on my list of things to get ASAP.
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  #10  
Old Mon Apr 21, 2008, 09:15 PM
junglegirlsue junglegirlsue is offline
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The oncologists nurse scoffed at B12

Last week I asked her dr's nurse about her B12 level. She said it was normal and she didn't need it. They tend to frown when I come in with my folder of internet stuff off this forumn. I give myself B12 injections each week. My doctor laughed too but I feel like a new person. I got mine on the internet from Canada. I wonder if I should give it to her too anyway.

I bought her 1000 mg B12 with B complex. I am making her take 2 a day until her next blood test to see if it makes a difference.
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  #11  
Old Tue Apr 22, 2008, 11:13 AM
Marlene Marlene is offline
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Hi Margie....I think you are right on about the elderly and B12. This is such an easy vitamin to check and very easy to correct. B12 is not toxic and can help so many other things. The one thing that's never addressed is that during times of extreme stresses your body requires and uses more B12 than someone who's not. I wish they would treat the entire person and not just the disease in isolation. Oh well....

Junglegirlsue....is that 1000mg or mcg? The methyl form is a more bio-available form. Also, since she is supplementing, if you have her B12 checked, it will be elevated so you won't get a true reading. So if it comes back high, don't let them scare you into stopping it. One last thing....the B6 should not exceed 50mg. 50 mg is the standard. You can go up to 100mg/day but not in one dose. The standard B6 ingredient in most supplements must be converted by the liver and you don't want to put an additional burden on the liver. There is a form which does not require conversion, the p-5-p form of B6. This form is considered to be more bio-available also. But unless you think there's a b6 deficiency also, I would keep it to 50mg. (just my suggestions base on our experiences....I'm not "nutritionist") Hopefully her doc has checked at least her B12, folate, B6, iron and copper serum levels to establish a baseline. I would get copies of the results to have on hand.

I know how difficult it can be to try and get them to hear you when you come in with anything regarding treatments, nutrition, etc. It does take courage to assert yourself in these situation because they can be so defensive when patients/care givers take an active role. I find that if they do not know about certain nutrients, then they play it safe and say don't do it. At least our doctor says that he does not know about some stuff and therefore cannot recommend it either way.

We have found that John's vitamin C, B5, zinc were low....again, nothing to do specifically with his anemia but alot to do with overall health. We will be checking his vitamin D level in the next few weeks.

I hope the B12 helps....let us know.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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