Advanced Member
Posted 12 January 2018 - 07:21 PM
Just curious how many of us are battling the Flu this year.
https://www.statnews...flu-season-cdc/
I have avoided it so far - but all of my friends and family around me have fallen ill with this disease.
My wife is just now recovering.
Worst part - I had to take care of the dogs. I hate it when she gets sick.
(p.s. I have a reason why I have not fallen sick with the flu!)
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"
Advanced Member
Posted 12 January 2018 - 11:36 PM
I got the flu for the first time ever (in my late 40s) and am now getting over it. I have never received a flu shot in my life. My symptoms were not severe but it has really knocked down the energy level a few notches.
I am blaming the flu on raw oysters. I usually start eating Gulf oysters right after Christmas, but I was I little busy at work and hadn't had a chance to get any oysters yet this season. So a lack of oysters made me vulnerable to the flu. (I think).
Advanced Member
Posted 13 January 2018 - 01:52 AM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 13 January 2018 - 02:24 AM
Anybody else who had a flu shot come down with the flu this year? I have gotten a flu shot at the beginning of the season for many years.
In that time, I have had only one mild case of flu, although since I have had CML, I seem to be more prone to sinus infections.
Advanced Member
Posted 13 January 2018 - 07:50 AM
No flu yet for me - got the shot in October
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Advanced Member
Posted 13 January 2018 - 09:12 AM
Why it's still worth getting a flu shot https://www.boston.com/news/health/2018/01/13/why-its-still-worth-getting-a-flu-shot
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 13 January 2018 - 01:40 PM
Member
Posted 13 January 2018 - 03:38 PM
No flu so far this season, knock on wood. Just got flu shot this past Thursday. My onc strongly recommended it.
Aug 1 -2017 DX as a result of annual physical. I had been feeling tired and out of breath, WBC 130,
Baseline PCR 100 IS
Aug 4 Start Dasatinib 100mg daily
Aug 30 Stop drug due to Myelosuppression, CBC counts too low
Sep 8 Resume drug. (Onc prescribed 100mg every other day even though 50mg was the new desired
dose, this tactic because I had coincidentally just received 30 tabs of 100mg.) This every other day regime continued through Nov 8.
Nov 3 PCR 35.96 IS
Nov 7 New Oncologist
Nov 9 Start taking Dasatinib 50mg daily
Nov 25 Bump up dose to 70mg daily
Nov 30 PCR 14.79 IS
Jan 4-2018 PCR 2.65 IS
Advanced Member
Posted 15 January 2018 - 12:20 AM
The doctor I work with got influenza A after having the influenza vaccine and a trip out of the country. This was like early November.Anybody else who had a flu shot come down with the flu this year? I have gotten a flu shot at the beginning of the season for many years.
In that time, I have had only one mild case of flu, although since I have had CML, I seem to be more prone to sinus infections.
Advanced Member
Posted 15 January 2018 - 03:03 PM
I do get the flu shot every year and I keep my pneumonia vaccines up to date. I had influenza twice, both during pandemics (50's and 60's) and I don't ever want to go down that road again!
Scuba, I'll bite...what is the reason you have not fallen ill with influenza?
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 15 January 2018 - 04:06 PM
Still Not Convinced You Need a Flu Shot? First, It's Not All About You https://www.nytimes....d-immunity.html
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 15 January 2018 - 04:08 PM
I get a flu shot at my Fall onc appt every year now. I got them for many years when my daughter was young because she had asthma. Never gotten the flu in a year when I got the shot, but I've had it several times when I hadn't gotten vaccinated.
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
Advanced Member
Posted 15 January 2018 - 04:09 PM
I do get the flu shot every year and I keep my pneumonia vaccines up to date. I had influenza twice, both during pandemics (50's and 60's) and I don't ever want to go down that road again!
Scuba, I'll bite...what is the reason you have not fallen ill with influenza?
Vitamin D3
I take alternating 5,000 / 10,000 IU's per day during winter months (along with vitamin K2 (200 mcg). Both vitamins are fat soluble so you need to take them with food that has some fat in it (avocado, meat, etc.). Once I started doing this after my physical in 2013, never sick again. No flu - no cold, not even a cough. And I have been surrounded by sick people lately.
https://www.scienced...70216110002.htm
Vitamin D activates T-cells against virus'. Also - vitamin D activates blood cell differentiation including leukemic cells. I have always had blast cells (undifferentiated blood cells) in my blood test results. Once I increased my vitamin D blood level, blast cell counts went to zero.
Normal range for vitamin D is between 30 - 50 ng/ml. New studies indicate this may be too low for best immune system function. I maintain my vitamin D level between 50-70 (it is 70 most of the time) ng/ml. and test twice a year. Back in 2013, my vitamin D level was 17 ng/ml. You get rickets below 16 ng/ml.
In summer, I reduce my vitamin D3 intake to 5,000 IU's per day and make it a habit to get some summer sun.
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"
Advanced Member
Posted 18 January 2018 - 11:20 PM
100 years after "super-flu" pandemic killed millions, universal vaccine remains elusive http://cbsn.ws/2EU70aw
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 26 January 2018 - 04:33 PM
Flu Season Rages On, Hitting Baby Boomers Unusually Hard https://n.pr/2Gj564Z
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 26 January 2018 - 04:42 PM
Flu Season Rages On, Hitting Baby Boomers Unusually Hard https://n.pr/2Gj564Z
https://news.harvard...t-cold-and-flu/
https://www.npr.org/...r-colds-and-flu
http://www.bmj.com/c...t/356/bmj.i6583
Everyone around me this year (all baby boomers) had the flu (December - January).
Not me. And they coughed all over the place. No flu shot either.
Could it be ..... vitamin D .... did not intend to rhyme ... but no flu - this time.
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"
Advanced Member
Posted 26 January 2018 - 04:45 PM
pre-cml...never had the flu shot, never got the flu
post-cml...always get the flu shot, still never get the flu
conclusion...I never get sick but instead I got cancer, can't have it all I guess
vitamin D level...55-60ng/mL year round (no supplements) I just hop on a plane every other week, not as cost effective but gets the job done
final conclusion...vitamin D does not prevent cancer, but maybe it does prevent the flu 
Advanced Member
Posted 26 January 2018 - 07:59 PM
Advanced Member
Posted 26 January 2018 - 08:31 PM
My vitamin D is in spec too.
and did you get the flu?
(in spec ~ 60 ng/ml)
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"
Advanced Member
Posted 26 January 2018 - 10:34 PM
My whole family's been sick with the flu for three weeks and I haven't got it (touch wood). Haven't had a flu shot for the past one and a half years. Maybe it's the 50mg per day of Sprycel
Only kidding... it's probably immunity from previous ten years flu shots... but I love the idea of getting a positive side effect (as well as life itself) from Sprycel.
CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
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