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Vitamin D and cancer

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

My fabulous Dr. at Gulfcoast Oncology in Clearwater Florida(Tampa Bay area) read my vitamin D results and even though it was very low but in the normal range he gave me a script for VIT D2 1.25 MG (50,000 units 2x a week for 10 weeks) Vitamin D levels go up slowly and he wants me on the very top of normal. Just thought I would pass this on. I was diagnosed in Jan 2009 with follicular nhl Stage 3B and have been in remission since June 2009. I have a PET scan (the fist since Sept 2009) on Oct 21st. I keep hearing about Vitamin levels and how important they are. Mine was low before lymphoma and I live in sunny Florida and have a boat. Strange!!! I hope this inspires you to ask your Dr. about your D levels. God's blessings to all. God is good. Joanie

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Joanie,
Thank you for sharing this information. I will make a point to ask my doctor about my vitamin D levels. Glad to hear your cancer is in remission...gives me hope!
Love...Sue (FNHL-2-3A-6/10)

yesyes2
Posts: 461
Joined: Jul 2009

Thank you Joanie for the Vitamin D information. Yesterday I got results from blood work I had taken last week including a Vitamin D test. Thought I was OK because mine was 41 out of a normal range of 30 to 100. And thats on taking 2000 D daily. Now I'm not so sure that that is an OK count. Just saw my onc yesterday and already I have a reason to call him. This taking care of ourselves is never ending. My calcium count is also low, below normal and that is also on 2000 daily.

Wish my docs would not just look at range but where on the range they are.

Take care,
Leslie

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Leslie,
Boy,I really need to get on the ball here. Not once has any doctor I've seen so far mentioned a word about my vitamin levels. I don't even know if mine are being checked. My lab paper work doesn't show anything concerning vitamin counts or reference counts to compare too. Definetely need to run all of this by my "new" doctor. Geeze..makes one wonder if we are getting "the best" treatment or not. The pred might be making me over-react right now, but I'm still going to ask my doctor... Thanks Joanie and Leslie for bringing this info up. Love...Sue (FNHL-2-3A-6/10)

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I forgot to mention I told my Dr. about being achey and he said the vitiamin D levela often cause this. My primary care care Dr. said the same. Love and prayers to all. My Dr did his internship with Moffit in Tampa

yesyes2
Posts: 461
Joined: Jul 2009

Hi Sue,

I have never had any doctor mention getting tested for vitamins other than the standard ones on a blood chemistry, I guess it's up to us to ask and manage our own care. And I do not think most of us are getting the best care. Too many doctors let too many things fall through and I have yet to have any doctor really keep track of what is going on from appointment to appointment. That goes for pcp, specialists, what ever. It actually took me 4 months to get a doctor to do a vitamin D and than they ordered the wrong vitamin D and I had to do it all over again. Go figure.

Sorry for the rant.
Have a great day,
Leslie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Leslie,
They have so many patients to keep track of. I know we just need to keep on top of things. I don't take any vitamins except D and calcium as I am a good eater. I also only eat organic potatoes and apples as they say they have the most pesticides. I eat only organic beef and chicken also. I eat pork but I try not to think about that dirty little piggy. Hey you can rant any day. Thats what we are hear for -- to listen to each other.
Blessings Joanie

forme's picture
forme
Posts: 1157
Joined: Aug 2010

Hi Joanie,
My pcp and onc both always test for my vit. d levels. I have been very low lately and also take rx vit.D. Still very low levels at my last blood draw. I have 2 cancers right now. Makes you wonder...
Peaceful healing
Lisha

CKiesch
Posts: 1
Joined: Oct 2010

I'm new to the Cancer Survivors Network as I just found the site last night so you are the first person I've communicated with. Was interesting to read your info on Vitamin D. My doctor at Mayo had mentioned it, but no doctor has actually told me what my count is or recommended that I take it. Do you need a prescription? I have no idea how much to take. I was diagnosed with Follicular lymphoma in june of 2010. What a SHOCK!! 2 months into retirement after working for 35 years. I have had one round of Rituxin and go for another round in a couple of weeks. We have a place near Lakeland FL. that we plan to go to for the winter months, so I wanted to get all treatments out of the way before we leave. where is the oncologist you go to in Florida?...just in case I need to see one. Good to hear you are in remission. I keep hearing it's not curable and that it gets worse so it's good to hear positive words. My lymphoma is Stage 1-2 in my abdominal cavity. Thanks for the notice about vitamin D. Carol

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Carol'
It will get worse if not treated. The technology today will usually have positive results with lymphoma. There are so many of us on this site that have just gone into remission. There WILL be a few more shortly that will also go into remission. The secret is to get the treatments. They are not pleasant, but they are needed to get better. I don't know what exactly the type of lymphoma is you have, but a lot of the treatments are the same. Some are indolent and some are aggressive. John
(FNHL-1-4A-5/10)

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Carol,
I started out by taking 2000units I believe from over the counter. My primary care Dr had my levels tested. I was 33. 30 - 100 is normal. My oncologist, who is so smart and 5 people in my cancer support group at church go to, put me on prescription Vitamin D. I take 50,000 units 2 x a week. He wants my levels to be high normal. He is so caring. I had a Pet scan on Thursday and he called me on Thursday and told me he would call me as soon as he knew anything. Friday he called and I am still in remission. I was diagnosed in Jan 2009 with folicular NHL. I took 6 rounds of the CHOP and was cancer free after the third round and have been cancer free since June 2, 2009. I know it is a hard journey and difficult to wrap your head around. I was just 61 when I was diagnosed. I stopped work for awhile since I am a teacher but I am back teaching since Sept. 2009. I take Rituxin just as a maintanence drug. They told me at Moffit Cancer in Tampa that I had an 80% chance of the FNHL not coming back for 7 to 9 years. I was diagnosed with Stage 3A. My Dr is with Gulfcoast Oncolology in the Clearwater area. I believe he is best. He did his internship at Moffit I believe. No, they say there is no cure but I know of people who are 20-30 years out with this. There are so many clinical trials out there and so many treatment options. Anytime you want to talk I will give you my work e-mail and we can talk on the phone. God bless you

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Welcome Carol.

So sorry you are here, but glad at the same time. This is a great place to be for support. Lymphoma is treatable, but will get worse without treatments. I am doing Rituxan maintenance now. With this last relapse we chose to do treat with just rituxan. I did once a week for 4 weeks, then every other month maintenance for a couple years.

Rituxan is a good drug and the reports are showing great results. I know cancer is an incredibly stressful diagnosis, but we are very lucky that it's treatable.

Welcome...

Beth

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