The Leukemia & Lymphoma Society Community: Message List

Re: So frustrated - #$^@&'ing PCR tests

communityreply@lls.org — Tue, 21 May 2013 00:41:03 GMT

Heeeeyyy Lucky,

You are so beautifully articulate! I clearly see and feel your frustration and disappointment and fear. So sorry to hear that you are being tasked with these challenges, especially all at once.

One thing is abundantly evident: you CAN handle it, despite being sick of having to. Hearing you express the situation so calmly and clearly — despite the bother of it all — you are obviously bigger than the problems being experienced: you really do have a good perspective on it all.

Nonetheless, not an excellent day . . . I do hope that the test results, as they come in, are the BEST imaginable!

Meanwhile, singing is supposed to be very beneficial, so while the car radio is on the blink, knock yourself out in song, maybe!

And for what it's worth (image found on Facebook):

Take care,

ChrisC

Re: How many of us smoked cigarettes?

communityreply@lls.org — Sun, 19 May 2013 17:01:28 GMT

I smoked for nine years; quit in mid-1970s. Mom smoked, so there was second-hand smoke until I left home (a smoker).

Re: Report: Nilotinib Associated with Increased Peripheral Artery Disease Rate in CML

communityreply@lls.org — Tue, 14 May 2013 15:59:25 GMT

Yes, you are right in feeling that we can benefit by being informed — this is why I posted this, along with my comment: "I feel that the last line is the main point, :'We strongly suggest to capture baseline ABI, biochemical risk factors and to monitor these parameters regularly throughout therapy of CML.'" I feel that having this information may help us get tested in good time when taking Tasigna, or especially when being switched to Tasigna. However, some folks prefer to leave it to their onc to know what is best, and I agree with that too, since that is less stressful for them, and stress is a major factor in our lives. Basically, however we choose to approach our situation and our treatment, that is correct for each of us individually and thus is to be supported : )

Re: Report: Nilotinib Associated with Increased Peripheral Artery Disease Rate in CML

communityreply@lls.org — Tue, 14 May 2013 14:36:25 GMT

You are right, of course. This is what your onc is supposed to be informed about.

Report: Nilotinib Associated with Increased Peripheral Artery Disease Rate in CML

communityreply@lls.org — Tue, 14 May 2013 05:03:47 GMT

I feel that the last line is the main point, :

“We strongly suggest to capture baseline ABI, biochemical risk factors and to monitor these parameters regularly throughout therapy of CML.”

---------

http://www.cancernetwork.com/chronic-myeloid-leukemia/content/article/10165/2142368

Nilotinib Associated With Increased Peripheral Artery Disease Rate in CML

Both a retrospective cohort analysis and a prospective study found higher rates of peripheral artery occlusive disease (PAOD) among patients with chronic myeloid leukemia (CML) who received nilotinib than in those who received imatinib. Both new studies were published online ahead of print on April 5 in Leukemia.

Previous reports on PAOD and nilotinib treatment in chronic-phase CML patients suggest a frequency of the arterial disorder of between 1.2% and 12.5%. “However, all previously published articles are limited by the description of only clinically manifest PAOD without screening of asymptomatic patients and without prospective monitoring,” wrote authors of the prospective report, led by Theo D. Kim, MD, of the Charité-Universitätsmedizin Berlin in Germany. The group prospectively screened all chronic-phase CML patients at one institution between August 2011 and November 2012, using the ankle–brachial index (ABI) and duplex ultrasonography.

The study included 159 patients, some of whom were also included in other CML trials, such as ENESTnd. Of the total cohort, 54 patients were on first-line imatinib; 33 were on first-line nilotinib; 33 had previous imatinib exposure and were on second-line nilotinib; 25 had previous nilotinib and were on another therapy, considered “post-nilotinib”; and 14 were nilotinib-naïve patients not receiving imatinib.

ABI was obtained in 129 of the 159 patients (81%), and a pathological ABI indicating PAOD was seen in 24 of 129 (18.6%). There were higher rates of pathological ABI in nilotinib-treated patients than others. Only 6.3% of first-line imatinib patients had pathological ABI, compared with 26% of first-line nilotinib and 35.7% in the second-line nilotinib patients. In the post-nilotinib group, the rate was 16.6%, and 12.5% in the nilotinib-naïve group.

Both the first- and second-line nilotinib groups’ rates of pathological ABI were significantly higher than the imatinib group (P = .0297 and .0029, respectively). PAOD that was clinically manifest, defined as “typical peripheral ulcerations or an acute event of PAOD,” were found in five patients, all in the first-line, second-line, or post-nilotinib groups. The relative risk for PAOD defined by ABI was 10.3 for patients on first-line nilotinib vs first-line imatinib, a risk the researchers described as “remarkable.”

The other analysis, a retrospective cohort study, painted a slightly different picture of PAOD and nilotinib, though the increased risk vs imatinib remained clear. That cohort included a huge number of chronic-phase CML patients: 533 with no tyrosine kinase inhibitor (TKI) treatment; 556 treated with nilotinib; and 1,301 treated with imatinib.

The nilotinib-treated patients had an exposure-adjusted risk for PAOD of 0.9 vs the -naïve patients, while the imatinib-treated patients had a risk of 0.1 compared with the -naïve cohort. A multivariate analysis showed that while nilotinib did not change the PAOD risk vs no , imatinib lowered the risk significantly, and nilotinib was associated with higher overall rates of PAOD than imatinib. The authors, led by Frank Giles, MD, of the National University of Ireland, Galway, concluded that patients initiating therapy for CML should undergo risk factor assessment for PAOD.

Dr. Kim and colleagues also agreed, concluding: “We strongly suggest to capture baseline ABI, biochemical risk factors and to monitor these parameters regularly throughout therapy of CML.”

Re: My journey into TKI cessation

communityreply@lls.org — Wed, 08 May 2013 22:49:15 GMT

Hi Dan,

It’s an individual journey, and looking back over it I now, with a little bit of knowledge compared to what I had at the time, I’m not sure I see anything really useful: just my own journey through CML.

Here are the test results from back then, for what they are worth, and good luck seeing something that shows any answers that may explain why my journey worked out so well. I didn’t really get very far on Gleevec, likely because I couldn’t stay on it:

[dates are in reverse order now:]

PCR Ratio number:

10.23.08 21.225

Began Gleevec 400 mg 10.29.08

12/01.08 0.091

Side effects to G extreme; took a week's vacation from G

Reduced G to 300 mg, then 200 mg

02.02.09 1.104

03.02.09 1.256

04.01.09 0.973

Gleevec vacation: 4.18.09 to 05.18.09

05.18.09 0.015

Resumed G due to higher WBC (13.52, had been 4.+ for three months)

Also, higher platelets (1373; had been between 272 and 311 for four months)

I hope this is of some help?

ChrisC

Re: Fighting Fire With Fire

communityreply@lls.org — Wed, 08 May 2013 21:01:06 GMT

Brilliant! I like this approach, though obviously it has to be tried still as a "last resort" until it can be replicated successfully and made safe for trials in newly diagnosed individuals.

Re: My journey into TKI cessation

communityreply@lls.org — Wed, 08 May 2013 20:47:27 GMT

Short answer: Which TKI & dosage were you on (Gleevec 400mg, then 300mg, then 200mg, then a 4-week vacation followed by one week of Gleevec 400mg while awaiting the arrival of my Sprycel 100mg, which I took faithfully for two years and four months, always after dinner/before bed), and what specific supplements did you use while you were on treatment vs. supplements you introduced after TKI discontinuation (pretty much always took 3–5 gummy vitamins for dessert after dinner, then added 2–3 gummy Vit. D3 1000 IU at the same time. I still take them)? Did you take these supplements with your daily dose (like literally in the same gulp ), or time things differently (supplements would be after dinner — sometimes in the afternoon if I needed a snack — but not with the Sprycel)? It really is incredible that you got to PCRU so quickly - and not that there's a "secret sauce" that would work for everyone, but I am curious ...

Hi Dan,

Thanks for asking.

Note that in the year or so prior to dx (Oct. 22, 2008), I was quite fatigued, napping a lot. Then in the two months prior to dx I lost over 30 lbs. I thought that I had been experiencing a return of mono that I’d had in high school, and that I’d feel better in a couple of months, which I did — then I went to the doctor and was diagnosed with CML.

In the hospital I started Gleevec 400mg when my WBC had been reduced from 459k to 121k by daily leukapheresis over a week, during which time I also took daily allopurinol. Once home, I had to deal with a full-body rash and edema, for which I took prednisone and hydrochlorothiazide.

For seven months I tried to stay on Gleevec, but due to side effects I reduced first to 300mg, then 200mg, then was told by a CML specialist at Stanford that I was referred to to take an up-to-4 weeks’ TKI vacation and to restart Gleevec at 400mg again, to see if we could reset my system’s acceptance to Gleevec.

I’ll just mention that a few months after starting Gleevec 400mg, I — and my friends — noticed that I had quite a hearing loss. This has never been overcome, and I have hearing aids now. It might have been the high WBC, it might have been Gleevec . . . I found several other mentions online of such hearing loss, and in all cases they also had high WBC (higher than mine) and were treated with Gleevec. I also read that the FDA has received enough reports of hearing loss after starting Gleevec that they are studying it as a possible, though rare, side effect. My onc hadn’t reported my hearing loss to anyone, so I found the site to report it online and wrote of my situation. Maybe it helps.

At the end of my 4 weeks of no Gleevec, my blood work showed that my WBC had increased to 13, and on my onc’s advice, I immediately took 400mg Gleevec and within a day was reeling from fatigue, brain fog, aches, etc. I stayed on the 400mg of G for a week while we waited for the Sprycel 100mg to arrive.

I took a one-day break before starting Sprycel after dinner. During the night I woke, had to vomit, went back to sleep, and was very fortunate to not have any major side effects (no headaches, etc., so I was pleased to take it) while adapting to it. I did have ongoing fatigue and other side effects, but the big “blah” blanket of the Gleevec was gone within a few days.

I always took my Sprycel at night after dinner/before bed (could be a range of up to four hours). I usually ate my gummy vitamins for dessert, as they were yummy and it satisfied me without having to eat a big dessert. I also had red wine with dinner, if I could afford it.

Over the two years that I took Sprycel, I missed taking it two or three times only. I found that putting an entire month’s pills into a divided covered plastic pill tray always allowed me to see if I’d taken my pill.

What was great is that after starting Sprycel in mid-May 2009, four months later my Sept. 2009 PCR was 0.000, and it has never changed. My lab is Quest, and last year they started using Int’l Standard when reporting results: still 0.000.

In late Aug. 2011 I got the approval of the same Stanford onc to try my own trial of stopping Sprycel on my two-year PCRU anniversary, Sept. 14, 2011. I see my onc every 3–6 months, with the blood work a week or two beforehand so that we have results handy. Next appt. is Sept. 17, 2013.

What made it work for me? Some ideas are:

• leukapheresis instead of hydroxy to reduce WBC (my platelets were always normal). I suspect that the removal of these excess WBC in this way somehow stimulated my marrow to make many replacements faster than it would have with other treatments, and perhaps that flushed out more of the higher stem cells, which were annihilated by the Gleevec

• my gut feeling: I do NOT recommend this, but perhaps somehow, it helped to allow my body to keep trying to tackle the CML for so long without treatment — the fatigue for the year or so leading up to dx was somehow manageable, except for the last two months when I was soooo fatigued and had no appetite and lost those 30+ lbs., during which time I always had confidence that it would pass in a couple of months. My huge spleen was so uncomfortable that at night I had to slowly roll over so that my internal organs could organize themselves into sharing of the space available

• early on, to try to deal with the side effects of Gleevec, I took a special Ayurvedic paste (given to chemo patients during treatment to allay side effects, and proven to not have any interference with treatment) twice a day with either pomegranate juice or purple grape juice: this was when I was on 200mg Gleevec and was just trying anything to overcome the debilitating side effects. When the Stanford specialist I was referred to heard I’d done that he was upset, but it was a really tough time for me. I stopped everything during the 4-week TKI vacation before starting Sprycel

• I’ll just say this: the day after I took my first Sprycel pill, a friend sponsored me to a series of about 8 hours of phone consultation time with a healer in Texas. I completely enjoyed speaking with her, and felt very good afterwards. After those few weeks I haven’t spoken with her since, but I’ve given her phone number to friends with serious medical issues who were interested. Never before or since have I felt to seek such assistance, but at the time I chose her over another famous healer who was highly recommended

• I was a complete vegetarian for over 20 years, though I began eating a little chicken and fish in the late 1990s. I always try to eat organic fruit and vegetables, and try to avoid any frozen, leftover, GMO, fast-food type of meals. It takes time to cook fresh, but it’s so yummy and worth it, to me.

That as the LONG answer!

Take care,

ChrisC

Re: My journey into TKI cessation

communityreply@lls.org — Wed, 08 May 2013 06:21:47 GMT

Hi Joel,

Congratulations — isn't it amazing! Well done, carry on, enjoy!

Great that for some of us, it is working out to be off our TKIs in a continuous, ongoing fashion. Whee!

Of course, we wish it for everyone: that the cure can be found and really hope it is soon, for everyone.

Last week I got my latest PCR test result — still PCRU, since Sept. 2009, and completely off TKI since Sept. 2011. September this year will be two years and counting since I took any medicine.

I had read that a couple of folks in the trials had had sudden relapse in their 19 and 20 month tests, so I was very happy to slide through this recent test well. Looking back, it's amazing that with such a high WBC (459k) and a huge spleen and 4–5% blasts, that technically I "had CML" for only 11 months, from diagnosis, before hitting PCRU, and it's been almost 4 years (in Sept.) that I've been blessed with a steady 0.000. Granted, I lost my hearing and didn't get my energy completely back yet, but I don't think I have CML.

I continue to take my gummy bear multi-vitamins, Vit. D, and I've added a B-complex now too. Also started taking fish oil. Tried taking curcumin but didn't stay with it, though for years I've cooked with turmeric — recently started cooking with fresh turmeric root from Whole Foods.

Best of luck to you, too, Joel. Yes!

ChrisC

Re: Article - CML experts reflecting on high cost of drugs

communityreply@lls.org — Thu, 25 Apr 2013 22:35:18 GMT

I especially enjoyed the Comments section following the well-written article, where so many views on the practice of charging high prices for our various TKIs are voiced and discussed. It is indeed a complex issue.

I have wondered how much having to be on Medi-Cal influenced my drive to try going off my TKI after two years at PCRU: I do know that while I was on Gleevec, then Sprycel, I was hugely relieved to learn that Medi-Cal was charged a fraction of the almost $10,000.00/month charge listed on my receipt from Target. I continue to be hugely relieved to be off all medication still, for so very many reasons! My deep, sincere, and ongoing appreciation to each and all in our nation of taxpayers for their annual contributions that go to our beleaguered medical-assistance programs: truly a life-giving use of tax dollars when used so effeuctively (not always the case, I know). Thank you! I am doing my best to not need much assistance, believe me.

Thanks for posting the link, Stephen.

ChrisC