I've noticed a significant increase in sensitivity to the Sun. (Sprycel 100mg) I get sunburnt much easier than before. My oncologist told me to that alcohol was fine in small doses as long as my liver function remained normal. She also said to to be wary of excess caffeine because she wants me avoid getting dehydrated, but that a few cups of coffee daily was fine as long as I kept drinking water throughout the day.
Caffeine, Sun Exposure, Alcohol
Started by
JohnFromChicago
, May 04 2016 02:55 PM
33 replies to this topic
#21
beno
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Posted 23 May 2016 - 03:17 PM
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
#22
Trey
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Posted 23 May 2016 - 08:35 PM
Going to an outdoor wedding in Palm Beach very soon. Wearing a hat. Hope it's enough.
Depending on the wedding, wearing only a hat may or may not be appropriate. Just sayin'
#23
gerry
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Posted 23 May 2016 - 08:56 PM
Depending on the wedding, wearing only a hat may or may not be appropriate. Just sayin'
I think you're right Trey - brides usually like all eyes on them. :-)
#24
rcase13
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Posted 23 May 2016 - 10:47 PM
Thus sounds like an interesting wedding. Are we all invited? I have a nice hat...
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#25
Trey
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Posted 24 May 2016 - 01:59 PM
I looked up Emily Post's advice on the issue. Emily says:
"Cancer patients are exempt from hat rules. They may keep their hats or caps on at all times if they wish."
http://emilypost.com...e-for-everyone/
So one could conjecture in a reductio ad absurdum approach that wearing only a hat might be appropriate for CML patients. Just following the path wherever it may lead.
Emily goes on to say:
"Take your fashion hat off...Anytime it blocks someone's view, such as at a wedding"
So you would be a big hit either way.
I would advise caffeine and alcohol before going to reduce sun exposure.
Edited by Trey, 24 May 2016 - 02:01 PM.
#26
gerry
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Posted 24 May 2016 - 04:58 PM
Perhaps if you are only wearing a hat, a sombrero might be the way to go. They have a broad enough brim that everything else under it might still be in the shade, thus avoiding potential sun burn.
Trey - does Emily P have any objections to the size if the hat?
Trey - does Emily P have any objections to the size if the hat?
#27
Trey
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Posted 24 May 2016 - 07:59 PM
Wearing a sombrero while holding a Spanish coffee liqueur might be the way to go. Meets all the needs.
https://en.wikipedia...t_of_hat_styles
http://www.drinksmix...om/desc269.html
#28
winespritzer
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Posted 17 June 2016 - 08:26 PM
Wearing a sombrero while holding a Spanish coffee liqueur might be the way to go. Meets all the needs.
https://en.wikipedia...t_of_hat_styles
http://www.drinksmix...om/desc269.html
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
#29
winespritzer
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Posted 17 June 2016 - 08:31 PM
Hahaha
Thank you all...twas a fun wedding, celebrated remission w drinks, oysters, sushi, clams, and a sombrero....for real!!
All the good stuff I was advised not to eat.
The Florida humidity is a killer on joints.
Now I'm using a creme that has some 'joint' stuff in it. Seems to be working!
Happy summer to all.
Winespritzer
Thank you all...twas a fun wedding, celebrated remission w drinks, oysters, sushi, clams, and a sombrero....for real!!
All the good stuff I was advised not to eat.
The Florida humidity is a killer on joints.
Now I'm using a creme that has some 'joint' stuff in it. Seems to be working!
Happy summer to all.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
#30
jmoorhou
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Posted 18 June 2016 - 03:22 PM
My doc never mentioned anything about sun, I love to lie in the sun, so I'm still doing it, with no sunscreen.
She also said drink alcohol "only on occasion", I was never much of a drinker so this is ok.
I have noticed I will get a stomach ache if I drink more than a cup of coffee...no more expressos...etc..
The only thing that really bothers me is the sun...
She also said drink alcohol "only on occasion", I was never much of a drinker so this is ok.
I have noticed I will get a stomach ache if I drink more than a cup of coffee...no more expressos...etc..
The only thing that really bothers me is the sun...
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#31
JohnFromChicago
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Posted 19 October 2016 - 06:08 PM
You can go to any lab test (e.g. https://www.anylabtestnow.com/)and have a test done (Saturday's, lunch hour, ...no need to use vacation days or see a doctor for this). Interpreting your vitamin D level is simple:
Below normal < 30ng/ml
normal is reported as between 30 - 50 ng/ml (some report between 30 and 100 ng/ml)
Excess > 100ng/ml is not desirable (hence the reason to test, but few people will ever see a level like this) and can cause hypercalcemia. So 'more vitamin' is not better vitamin. Vitamin D requires monitoring until you get a sense of how your body responds over the course of a few years.
For disease/cancer management keeping a level above 50 and below 100 is suggested. I keep mine between 60 and 80 (currently 72 at last test). It takes 5,000 IU's a day in summer and 5,000/10,000 IU's in winter for me to maintain this level. Dose varies by person hence the need to test.
On a side note - I have not had so much as a cold/flu or sniffles since getting my vitamin D level up. I just don't get sick anymore like I used to. Consider taking vitamin K2 with vitamin D3 (D3 converts to D in the body), the both work together to manage calcium in the body.
Finally was able to get my Vitamin D level tested (my onc forgot to add it at my last appointment back in July) it was above normal and I do not take any supplements, although I do spend many hours outside in the summer months....
VITAMIN D 25 HYDROXY: 57.9
...not bad for never taking any Vitamin D supplements and living in Chicago where it is now cloudy and cool and has been for the last month. I am going to get them re-tested again at my next appointment in January, if they are above 40 still I probably wont bother with any supplements but if they fall below 40 I will probably start taking some for the winter months only.
Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 50mg
0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
#32
scuba
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Posted 19 October 2016 - 06:37 PM
Finally was able to get my Vitamin D level tested (my onc forgot to add it at my last appointment back in July) it was above normal and I do not take any supplements, although I do spend many hours outside in the summer months....
VITAMIN D 25 HYDROXY: 57.9
...not bad for never taking any Vitamin D supplements and living in Chicago where it is now cloudy and cool and has been for the last month. I am going to get them re-tested again at my next appointment in January, if they are above 40 still I probably wont bother with any supplements but if they fall below 40 I will probably start taking some for the fall/winter months only.
57.9 is very good. I keep mine between 50 and 70 ...
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#33
Red Cross Kirk
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Posted 19 October 2016 - 07:05 PM
I just got mine checked on Monday and it was 46 again. It's been at 46 for the last year, it was 23 before supplementing. I think I'll increase from 7,000 iu per day to 10,000 and see where that gets me.
Kirk
9/25/2012 p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012 3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013 0.914%, 0.434%, 0.412%
10/2013 0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014 0.174%, 0.088%, 0.064%
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
#34
scuba
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Posted 19 October 2016 - 08:33 PM
I just got mine checked on Monday and it was 46 again. It's been at 46 for the last year, it was 23 before supplementing. I think I'll increase from 7,000 iu per day to 10,000 and see where that gets me.
I alternate between 5,000 one day and 10,000 the next during the winter season (which is now). It's important to note that vitamin D is "consumed" in the body by other processes. For example, improving vitamin K2 intake leads to vitamin D getting "used up" in order to create the enzymes that move Calcium around (from soft tissue to bone).
Everyone is different (hence the need to blood test). You take 7,000 IU's per day and are only at 46 ng/ml. Your body is busy using vitamin D - that's good. Probably explains your PCR results .... (I know Trey ... I know .... it's o.k.)
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
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