B12 after Rituxan treatment for FNHL - Non Hodgkin's Lym...

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B12 after Rituxan treatment for FNHL

Teddy811 profile image

I am new to this site and happy to find it. I have recently gone through 5 weeks of treatment with Rituxan. I was first diagnosed with NHL in 1982 at 28 years old. At the time the recommended protocol was chemo and radiation and the Dr. said I had possibly 10 years. I had just given birth to my youngest daughter 3 months prior. 10 years did not sound like enough time. I walked away from that Dr. and changed my life style. Started meditating and yoga. Improved my diet, basically put myself on W&W for 34 years. Never discussed it with any doctors over the years.... but in April it came back with symptoms that could not be ignored. My husband has gone through treatment for stage IV throat cancer in 2013 and a HPV sinus tumour this year. The stress of his treatment was intense. He is doing well I am happy to say! Then I was diagnosed again just as he recovered. I am in remission according to the last 2 scans. Having trouble getting my energy back. Finished treatment in June and find I am having hard time accepting that I still have no energy. Has anyone tried B12 shots? If so what was your experience with them? Thank you so much for the help. Teddy

27 Replies
Shar0n profile image
Shar0nVolunteer

hi Teddy - I saw your second post before this one which explains your situation. As regards the B12 - if it has been depleted by your treatment, it sounds sensible to get the shots. The most important thing to find out is the cause of the low energy. All treatment has side effects and if anyone here can elaborate on what exactly Rituxan does apart from reducing the tumour load, it would be very helpful to all of us, as it is such a common treatment.

Cheers to you for coming through so much. Maybe a blood test for B12 and iron stores/ferritin would help clarify if that is what is going on.

Teddy811 profile image
Teddy811 in reply to Shar0n

Thank you! That is a sound advice.

1Anj1 profile image
1Anj1 in reply to Shar0n

Rituxin is the trade name.

Rituximab is the chemical name.

All cells have certain proteins on the cell wall if you like, these are sometimes called proteins

Your lymph system has B cells or b lymphocytes. One of the common proteins is called CD20.

Rituximab attaches to the CD20 and tells the cell to kill itself.

So Rituximab does not care if the cell is healthy or cancerous.

Rituximab comes from a chemical family of Monoclonal antibodies (mAb or moAb) are antibodies that are made by identical immune cells that are all clones of a unique parent cell.

I hope that makes some sense

Teddy811 profile image
Teddy811 in reply to 1Anj1

1Anj1 yes, thank you, I am familiar with what Rituxan is and does. My question is if anyone who has gone through treatment has used B12 shots to help with energy, if so, what their experience has been.

Hi Teddy, I am so happy to hear you are in remission. I think it takes time to get your energy back after treatment. I had to wear a wet suit to go swimming for the first year after treatment because I was constantly cold. I take B12 daily as a vegan it is important to include this in my vitamins. I did try the B12 shots like 15 yrs ago as a diet treatment and it made no difference in how I felt energy wise. I don't believe there is any danger to the shots as your body will urinate out the excess. As time passes you will start to feel better. Eat healthy clean foods and continue your yoga and meditation. Wishing you well!

wow you were in remission for over thirty years????

amazing

Yes I would try to the b12 but check wit your doctor

I take liquid form every day

Hi Teddy 811, I haven't tried B 12, but I can say I finished treatment (chemo) in June 2015 then had 2 years of maintenance Retuxin (finished June 2017) and am just now (almost a year later) feeling like I am making progess with my energy level. Mild exercise, slow walking, a bit of yoga are all helping. Keep at it. Good luck!

Teddy I too had the Rituxan for 2 years monthly. I am remission from stage lV mantel cel.

I have had a really hard time getting my energy back, plus I got really bad neuropathy in feet. Numb feeling, twitching etc. I have never tried the B12, so can't help you with any response. I hope things improve for both of you and your husband... It's tough...

I have not had treatment yet but IP6 with INOSITOL gives me energy.

I am currently in a a clinic named Oasis of hope they are normal doctors but have been applying alternative medicine or a mixed of alternative with the traditional medicines used for cancer... I think they also get patients that have been trough treatments that get them fragil or with lots of toxicity and they detox their bodies.. Ive only been a week in this clinic but everybody talks great things about these place! You can call them or google them see if this could be a place where they can help you get your energy and life back!!

Teddy811 profile image
Teddy811 in reply to luciabon

Be careful with Oasis of Hope. Many cancer patients have said it is a scam. Costs a lot and very little to show for it. With our particular cancer you can go alternative and it truly does work.... but use a Dr. or clinic that is both East West Medicine.

luciabon profile image
luciabon in reply to Teddy811

Really? Where did you heard that? The patients over there have been alive for even 20 years and greatful for that place! I also have familiars that are thrilled with the results! I havent heard not once a bad thing so this is a big surprise for me! I only been there for 6 days...

Teddy811 profile image
Teddy811 in reply to luciabon

I live in Los Angeles and have been working with cancer patients since my own diagnosis. Meditation, biofeedback and alternative therapies. Many of the people that I have worked with went down there. If you are gaining some benefit from being there then that is great. Just reporting what I know from this end. FNHL is different with every individual. Please read Roberts newsletter as it is a great resource for self care. He and I separately did the same things and are long time survivors. Sometimes less treatment is better. Diet, Exercise, mediation are all key to getting and staying healthy. You can do this !

BLP1211 profile image
BLP1211 in reply to luciabon

Please let us know your experience there and outcomes. You can read reviews from others online. I read the reviews on many places. I am talking to a past patient this week who was at Functional Oncology, Angeles Hospital. I am trying to be careful because I do not want my cancer to become aggressive.

luciabon profile image
luciabon in reply to Teddy811

I don’t know what to say about it. Because there was alot of survivors who take care over there. I know people who has survived going there but Ib just went once you should go back every 3 months.. i never went back but still tale al the supplements they gave me and more i found a place where i hace colonics I do IVs etc.. i also had immunotherapy.. went vegan and lots of things that helped I guess all together. But for some reason I didnt went back, I felt pretty good though when I finished my 3 weeks.

BLP1211 profile image
BLP1211 in reply to luciabon

Please let me know your outcome. I have not signed my contract with Functional Oncology, Angeles Hospital, Tijuana, Mexico. Thanks. Good Luck.

Teddy811 profile image
Teddy811 in reply to BLP1211

My results are clean !

BLP1211 profile image
BLP1211 in reply to luciabon

Hello , was this Oasis in Tijuana? What all did you do there? What was your outcome?

Thanks for your information!!! I will dig deeper in this!

Thanks to you I did looked for more information and had an ultrasound at the clinic they told me I had nothing. Then came back to mexico did again the ultrasound 5 days later and they did see my two tumors with the ultrasound.. so i dont know what to think... I also subscribe to Roberts page it is a little hard to understand for me haha.. I decided to do the things you did, after all your diagnosis was the closest I know to mine... i would appreciate your advice on this!!!

Meditation, yoga, no red meat, no alcohol, no sugar, no caffeine... something else? What about supplements herbs teas alcaline water anything else you can recall?

So understand you did ate poultry and fish.. what about eggs? Dairy?

I am glad to found you. Hope you dont mind helping i can even go to Los Angeles

Teddy811 profile image
Teddy811 in reply to luciabon

That is suspicious that they found 2 tumors in Mexico and not in another clinic. <y concern here is that some of these places only make $ if you are not well... so they are invested in you having tumors to treat. Where is home for you Lucia? Yes I still did eggs and dairy. I drink water at room temperature or warm sometimes with lemon. Herbal teas absolutely. Reishi mushrooms were a part of my early self-treatment. I believe you can do this for yourself. Continue to see your medical Dr. on a regular basis to monitor you.

luciabon profile image
luciabon in reply to Teddy811

One last question! What stage did you had when you where diagnosed and what stage did you had when you received treatment?

Teddy811 profile image
Teddy811 in reply to luciabon

Hi Lucia, When I was first diagnosed they did not have the scans and technology that they have today where they can determine stage with accuracy. They said it was early. This last time I was Stage 2 and treated with rituxan only once a week for 5 weeks.

luciabon profile image
luciabon in reply to Teddy811

And you went into remission with Rituxan only? I will began with rituxan in two weeks! But no one understands why Mayo Clinic is not suggesting Chemotherapy. I am glad to hear you didnt have Chemotherapy neither. I remember you said you didnt felt good after a long time after you got rituxan..

Teddy811 profile image
Teddy811 in reply to luciabon

I only experienced being tired with the treatment. I wasn’t nauseated. Just a sleepy and tired during the treatment and after. Energy levels have taken time to come back. My husband has been treated for stage 4 throat cancer with chemo and radiation. It is a smooth easy treatment compared with that.

BLP1211 profile image
BLP1211 in reply to Teddy811

Chaga tea.

Healthy Teas cannot hurt you and are good. Follow your own guidance in regards to your body. Again, I find it really suspicious that they found tumors where others did not. Remember they are also a “for profit” business. If you don’t have active cancer you don’t need treatment. My results were “stable disease” meaning that my tumor has not grown and the cancer is not active at the moment.

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