Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
I have not ever seen Vitamin D listed on my bloodwork. Next visit to the doctors, I will ask about it.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
David & Christine

You are going to have to ask for Vitamin D tests. Unfortunately CCC and most oncologists still have on 20th century blinders concerning blood work and routine tests. Lucky for me that my cardiologist went back for a post graduate course in the 21st century. He ordered both my thyroid (TSH) blood work and Vitamin D blood tests even before I knew I had cancer. When he was contacted by my CCC to make sure no cardiological issues precluded radiation, chemo or surgery, he stressed to me that in his experience, oncologists ignored Vitamin D and used old 20th century lab values for TSH. Sadly, it turned out to be very true.
My endocrinologist has a blood tests for tested for Vitamin D done every 5 months. She thinks it plays a major part in recovery from radiation and chemo.
Quest Diagnostics form shows it as test # 17306X, Vitamin D,25-Hydroxy. It gives you total D as well as a breakdown of D3 and D2 components
You want ABOVE 30 ng/ML for D total(it's the minimum, the maximum is 100)
My last readings were excellent at 50 ng/Ml for both total and D3. IMO this and the TSH tests should be part of the "standard" panel tests done for cancer follow up
Charm,

Last edited by Charm2017; 10-26-2011 09:24 AM. Reason: deleted TSH test numbers

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2009
Posts: 126
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Sep 2009
Posts: 126
This is all very interesting. I recently, last several months, had to start on Vit D, independent of any connection to the cancer. I had labs and a bone density test as part of a regular physical and determined a Vit D deficiency.

Sharon


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
Senior Member (100+ posts)
OP Offline
"OCF Canuck, across the pond"
Senior Member (100+ posts)

Joined: Jun 2010
Posts: 153
I've been taking 6,000IU/day of D3 for several years now. I had my D level checked last month and it was 62.4 ng/ml, which is within my understanding of the recommended range of 50-80 ng/ml. It seems likely to me that I would be deficient if I wasn't supplementing.


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Stily1

Thanks for starting this thread. I just got back from endocrinologist and my Vitamin D level is 64 ng/ml which she confirmed is excellent. I only take 4,000 IU a day (2 tablets at breakfast crushed and down the tube) I know I would be deficient without the supplements since my prior blood tests confirmed it. Like yourself, I started on Vitamin D supplements before I knew I had cancer, but only by two months.
It's important with Winter coming and less sun that people monitor their Vitamin D to see if they need supplements.
Charm

Last edited by Charm2017; 11-17-2011 12:09 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Most primary care physicians are including testing Vitamin D levels as part of a comprehensive blood workup that one would get with an annual physical exam. I'm fairly certain it has become a standard of practice. I'll ask my sister who is a family nurse practitioner.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Kerri

I don't think it's "most" in terms of numbers, but "most up to date and concerned" doctors, a dramatically smaller cohort. It should indeed be the standard practice, but as you can see from this thread alone, neither DavidCPA nor Christine have had it done despite regular doctors' visits. Sad to say, despite weekly blood tests for my two months of chemo for multiple panels, there was not even one Vitamin D test. It was my cardiologist who insisted on it and now I have my endocrinologist monitor it since I have to get regular TSH (thyroid) blood work anyway
My wife and son both have primary care physicians and neither of them have had Vitamin D tests for their physical exams.
I'd be interested to hear if your area is a bright spot of medical care after you hear from your sister.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hi, Everyone.
I guess my PCP is one of the proactive doctors who routinely test all patients yearly. I live in NE and we are especially at risk due to the long winters and cool springs. That being said, I'll quote you on what my sister found out for me...

"Currently, the recommended Vitamin D dose is 600 International Units (IU) adults ages 19 to 70 (which is higher than it used to be). People 71 and older are supposed to get 800 IU a day. I do not believe testing has become a standard in preventative medicine yet. In theory, your provider should be evaluating your health risks and any issues/complaints you may have and order the appropriate labs. You could ask for your levels to be drawn. Pretty much anybody that lives in this area is at risk. With that said, people should not just behave as if they are low and take more than is recommended. Some side effects of high levels have been noted."

Hope that helps!

Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I personally believe that healthful eating and such truly is the way to go. Vitamins are good dont get me wrong. But two glasses of almond milk offer up 90% of what should be your daily intake - of vitamin d. Plus the cottage cheese I toss into the smoothie I have every morning covers the rest - that said... I'm not taking any supplements any more (other than the protien I add to my smoothie in the morning) throw in a walk outside in the daylight for good measure and hopefully I'm getting enough. Was I vitamin d deficient? Prior to this - oh yeah for sure - I was a veg head for 7 years and had issues with dairy so I didn't do any kind of dairy except soy and even that not much!!! anyway - watching what you eat is the best way to go. Good article and it makes sense.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Luckily the issue of vitamin D deficiency is easily resolved. Blood tests don't lie. If your test shows you don't have enough Vitamin D, it could be diet, it could be aging (as we get older, everyone generates less Vitamin D). I agree with Cheryl that you should not just start popping Vitamin D pills
Few individuals would allow their clinician to simply guess an cholesterol level before placing him/her on some type of medication. Clinicians have access to an accurate lipid test that provides guidance. The same is true for vitamin D levels.
What counts is your blood level, not your intake.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5