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Newly diagnosed with CML

Started by Bmorris , Apr 18 2015 09:32 AM

What to expect

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112 replies to this topic

#101 Judithb

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Locationwilliamsburg, va and sarasota, fl

Posted 31 October 2015 - 02:36 PM

Thanks to all who posted. It's been 8 weeks since diagnosis of CML and now 8 days on Tasigna. Reading through the posts answered more questions for me than speaking to my doctor, whom I like and trust. Hearing that I am not the only one with scalp pain was such a relief.

What I take away from all this is that this diagnosis is similar to a legal case (I was a judge and now a law prof) in that reading, gathering info and then going back and reading again and making sense of the info is the way to proceed. Trey, thanks for your posting on CML testing. Now I can go back and make sense of the LLS booklet. I hope I can be my own health advocate as many emphasize , but the fatigue I am experiencing now makes me doubt it. How do all of you find time to deal with this along with just living your life and all that encompasses ?

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#102 soundoff

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Posted 31 October 2015 - 07:25 PM

A glass of wine works best for me but I'm no judge : - )

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#103 kat73

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Posted 01 November 2015 - 01:53 PM

Judithb - I think that what you will find is that you're curious or worried about something in particular and you go and research that. It's sort of a one at a time thing. Although there will be many times you disappear down a rabbit hole, where one thing leads to another, and pretty soon you realize you've been in front of the computer for a couple of hours. Time then to push away and go for a walk. You'll see - eventually you will know everything there is to know about CML, at least as far as a layperson's capability allows. For now, don't let it overwhelm you. Pretty much all you need to know is in Trey's blog. And you can always take your questions here.

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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#104 Kali

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Posted 01 November 2015 - 07:36 PM

Trey's blog is awesome!

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

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#105 Judithb

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Locationwilliamsburg, va and sarasota, fl

Posted 02 November 2015 - 09:15 AM

Thanks, again, responders. Pls will this itching ever end? Solved indigestion problem (for the time being) with help of my dr. But not ( 10 days on Tasigna) scalp and skin itch which is driving me crazy. Cream does not help. Looked it up, cannot take Benadryl as drug is also a QT prolonging drug.

I did solve dry hair problem but not underlying itch. What do others do? Will it ever go away, even temporarily? I know this is minor in the shceme of things but I need help on this.

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#106 Trey

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Posted 02 November 2015 - 09:50 AM

I have found that rotating shampoos every day helps (keeping 3 or more in the rotation). It keeps the skin guessing what is next and somehow seems to help. I also cannot overemphasize the flat-handed head rub instead of fingernail scratching. The more damage to the scalp, the more it will itch. It gets better over time, but for those who have this side effect it is one of those which often hangs on.

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#107 rcase13

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Posted 02 November 2015 - 04:13 PM

Yeah I prefer the aggressive fingernail scratching. If you yell while doing it, it helps. I don't recommend this method in public.

My ONC recommended head and shoulders. It did nothing for me.

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!

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#108 Frogiegirl

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Posted 02 November 2015 - 04:24 PM

Judithb how did you solve the dry hair thing? ????please share;)

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

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#109 Gail's

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Posted 03 November 2015 - 11:02 AM

Try dandruff shampoo and conditioner even if you don't have the flakes. Periodically rub your scalp with olive oil then shampoo it out. Topical Benadryl cream barely gets into the blood to cause the QT prolongation but I found lidocaine gel to be effective.

Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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#110 Judithb

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Locationwilliamsburg, va and sarasota, fl

Posted 03 November 2015 - 12:15 PM

Frogie girl: try Kendra Platinum hydrating conditioner. I put about 1/4 t. before I dry (slightly below chin length bob is my hairstyle). You may need more or less. I also use a litle less and put it on the ends of dry hair when the steel wool look gets too much for me.

My onco said I could take Benadryl after all. So much for being your own oncologist (LOL). thanks to all who responded. I will try your suggestions.

Rcase13: thanks for the humor. We all need it. Still very grateful 1) to have gotten this only at my advanced age, 2) to be in chronic phase 3) to be in earliest stages. And for all the help.

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#111 MarCap73

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Posted 03 January 2016 - 11:34 PM

Hi All. I was recently diagnosed too (November 2015) and made my first post in a more recently started "newly diagnosed" thread. I hadn't seen this one.

I have been very selective in who I have told; immediate family, a few close friends, and only a few folks at work who "need to know" - but everyone has said "let us know if we can help". Despite the offers for help, I have been feeling very overwhelmed and alone. Thanks for sharing your experiences; this is the "help" that they can't provide.

Dx: 11/2015

Sprycel: 100mg

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

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#112 soundoff

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Posted 04 January 2016 - 11:26 AM

I use Dove conditioner and no shampoo.
Works great!

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#113 Harper3994

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LocationTrinity, Florida

Posted 04 January 2016 - 12:03 PM

I am newly diagnosed also and on Tasigna. The itching in the scalp is terrible. Some days are worse than others. I use Head & Shoulders with coconut oil in it and leave it on for a minute before to rinsing off. Also don't wash my hair everyday. Seems to help a lot. Thank goodness for this forum because the doctors are no help at all when it comes to side effects. My doctor is "test happy" and already solo tired of it. I just want to move ahead and enjoy my life.