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Question of the day.

Started by Red Cross Kirk , Jan 23 2018 10:59 AM

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16 replies to this topic

#1 Red Cross Kirk

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173 posts

LocationOregon

Posted 23 January 2018 - 10:59 AM

Here's a suggestion for question of the day:

How important is this community forum to you?

1 - I'm new here and don't know enough about it yet.
2 - I'm an occasional user. If it wasn't available, I wouldn't miss it.
3 - I'm a frequent user and rely on it for information and support.
4 - I'm a devoted community member and would donate large sums of money to see it continued in it's present form.

I submitted this over on the contact us section of the LLS Community. I wonder if anything will come of it? Did you know they don't have smiley faces over there? No sense of humor.

Kirk

9/25/2012 p210 transcript 118.7% IS @ D_x, 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%

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#2 JackRyan8311

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Members
24 posts

Posted 23 January 2018 - 03:35 PM

I'm #3 and #4

Diagnosed 9/15/2017
WBC 56,000
PCR- I think was 58%
Imatinib 400mg 10/18/2017

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#3 kat73

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Members
884 posts

LocationWashington, DC area

Posted 23 January 2018 - 04:16 PM

I would say I'm a #3, as long as this stayed exactly as it is. In that form, I would be happy to pay my share for it.

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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#4 Melanie

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219 posts

LocationArizona

Posted 23 January 2018 - 11:51 PM

#3 & #4.

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

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#5 cmljax

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115 posts

Posted 24 January 2018 - 09:16 AM

#3 and possible #4 depending on what large sums of money we are talking about

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

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#6 Red Cross Kirk

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173 posts

LocationOregon

Posted 24 January 2018 - 10:49 AM

#4 was meant to be a little facetious. If they do use it for the question of the day on the community forum, it'll be interesting to see how it will be presented.

Kirk

9/25/2012 p210 transcript 118.7% IS @ D_x, 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%

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#7 lanadal

Member

Members
25 posts

LocationVancouver, Washington

Posted 24 January 2018 - 01:55 PM

#2

My facts:

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since. Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.

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#8 carrie

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Members
72 posts

LocationShow Low, Arizona

Posted 24 January 2018 - 03:22 PM

Between a 2 and a 3.

It depends on what I am going through or if I am reading to learn.

I am not knowledgeable enough to really help someone.

Diagnosed 2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

2.580

8.990

4.250

6.176

14.109 Changing to Tasigna 7/7/17

7/28/17 800 mgs Tasigna

10/5/17 600 mgs Tasigna (Lots of bad side effects)

10/16/2017 PCR down to 0.141

1/15/18 PCR down to 0.066 Dose reduction again. Now 400 mgs daily.

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#9 Red Cross Kirk

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Members
173 posts

LocationOregon

Posted 24 January 2018 - 04:11 PM

#2

I hope you're referring to the newer forum community and not the group of lovelies we have here?

Kirk

9/25/2012 p210 transcript 118.7% IS @ D_x, 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%

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#10 Riggered

Member

Members
19 posts

Posted 25 January 2018 - 09:30 PM

Solid 3. Willing to contribute in the 4 zone

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

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#11 jmoorhou

Advanced Member

Members
314 posts

LocationOutside of San Francisco

Posted 26 January 2018 - 01:02 AM

3 & 4 ... should have known something was up when they took away emoji's.....someone said they would pay for this site, so would I.

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

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#12 alexamay09

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Members
50 posts

Posted 26 January 2018 - 03:10 AM

Here's a suggestion for question of the day:

How important is this community forum to you?

1 - I'm new here and don't know enough about it yet.
2 - I'm an occasional user. If it wasn't available, I wouldn't miss it.
3 - I'm a frequent user and rely on it for information and support.
4 - I'm a devoted community member and would donate large sums of money to see it continued in it's present form.

I submitted this over on the contact us section of the LLS Community. I wonder if anything will come of it? Did you know they don't have smiley faces over there? No sense of humor.

I have been a 3 and a 2 because I'm in Scotland and haven't always found it easy to access. I'd hate to see it go though!

Alex

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#13 tiredblood

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Members
474 posts

Posted 26 January 2018 - 08:17 AM

#3 I would have probably ditched the TKIs for no treatment if it had not been for the discussions on this board.

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#14 hannibellemo

Advanced Member

Members
728 posts

LocationNorth Central Iowa

Posted 26 January 2018 - 08:40 AM

Kirk,

Just to clarify, Community is what LLS calls the site we don't like and seldom use. In that case I'm a solid #2

This is the "Living with CML discussion board". If that is what you are referring to in your question of the day I'm a solid #4

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>

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#15 Bronson_CLE

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Members
7 posts

Posted 29 January 2018 - 08:34 PM

I'm #3 and possibly #4. I don't post a lot on this forum, but read the topics; makes me feel I'm not the only one going through this; or my side effects aren't real. I don't like the other format at all; no topics to see.

KB

Diagnosed March 2016

Gleevec, 400 mg

2016 44.46 0.98 0.15% IS

2017 0.26 0.11 0.05 0.06% IS

2018 May