10 replies to this topic

[LivingWellWithCML]

Hi all,

I haven't been posting lately, but I follow the board and continue to think of all of you and our ongoing CML journeys.  Just a quick update on my journey for anyone who is interested, and some side-effect questions for our fellow CMLers:

Treatment Summary:

• Diagnosed on Mar 26, 2011
• Started Gleevec 400mg on Apr 12 2011 (98% FISH @ dx, and +0.50 log above Atlanta Emory Winship's PCR baseline [not sure where their baseline value comes from])
• Jul 2011 : 3-months: 5% FISH, -0.72 log decrease from Emory's PCR baseline
• Oct 2011 : 6-months: 0% FISH, -1.67 log decrease
• Jan 2012 : 9-months: 0% FISH, -2.48 log decrease (-2.98 log decrease from my personal dx PCR baseline ratio)

Seems like the response is optimal so far and I'm hoping to reach MMR+ by the one-year point ... super thankful.  Obviously I'm thinking about that critical two-year treatment point, so each test gives me more hope that I'm going to make it on Gleevec over the long haul.  Of course, I do wonder how much quicker I would've responded if Tasigna or Sprycel had been prescribed as first line, but I'm too far along now to worry about it.

Routine:

• Gleevec 400mg at 6:30am each day with a glass of water, banana and cooked, whole-grain oats + dried cranberries, granola and brown sugar.  And a piping hot cup of coffee typically follows within 20 minutes of taking the dose.  Normal meals / fluids during the day and a couple of glasses of red wine with dinner nightly.  I've eliminated liquor (except on rare occasion) and did a major reduction in red meat intake post-diagnosis.   I'm not taking any supplements, but I'm now considering adding Curcumin ... but I'd like to hear the latest from Michael and how he's doing.
• I just returned from a client work trip to London and shifted my routine to keep my body on the same "cycle" with the 5-hr time change, so I took the dose with lunch.  Of course, this meant that I followed it with a delicious pint of bitter in the local pubs within 5 hours of taking my dose.  So far, moderate amounts of caffeine and alcohol don't seem to be causing any problems with Gleevec.  Whew.
• I continue to push a rigorous fitness routine with the belief that it's helping my bone marrow to recover and expose more leukemic cells for Gleevec destruction ... running several times per week and weights a couple of times per week.  I actually had a gym workout the day before my blood draw, and sure enough, my liver AST level was slightly elevated.  Remind me to chill a couple of days before my next draw...
• My CML specialist is not a believer in ongoing BMB/A unless one loses response, so I've only had one at diagnosis.  All testing since that point has been through peripheral blood.  No complaints, but I still do wonder if that's the right course over the first couple of years, since the guidelines call for some additional BMB/A after diagnosis.

Side Effects and Questions for the Group

• For the most part, I feel perfectly normal and healthy on a daily basis and continue to work full-time and juggle a packed family life with my wife + 3 kids.  TKI treatment is really incredible stuff, and I'm so very thankful that I've been spared serious side effects (so far).
• CBC and CMP numbers look fine - WBC was back in the normal range for the first time since diagnosis (4.1).  Yay!  AST/ALT/AP liver levels are normal, but my bilirubin levels seem to be ticking up ~ 0.1 every three months (latest test = 1.4), but the CML specialist is not concerned, so I'm trying not to panic about it.  Anyone else dealing with minor elevation of bilirubin levels?
• Something about my metabolism changed after I was diagnosed - I wonder if anyone else deals with this.  I am 6'1" and was 42 yr old + 176 lb the day I was diagnosed (reasonably lean guy) and I barely finished a 5K road race that morning (running, walking, huff & puff in 27 minutes).  4 hours after the race, we received "the call" to report to the ER.  9-months into treatment, I'm now 43 yr old + 152 lb (very thin guy, LOL) and I can run a 5K in 21 minutes and a 10K in 44 minutes -- it's really exciting to have some decent running ability back and I have the researchers + donors + Dr. Druker to thank for it.  I do run a lot, but even when I have lighter weeks of physical activity, I cannot seem to gain a single pound - and I'm eating like crazy.  Gleevec metabolism change perhaps?  My local oncologist wants to see me back up to ~ 160 lb ... not really sure what's going on here.  I'm honestly not worried about it, but I wonder if anyone else has had a metabolism change like this?  I had some nasty anxiety initially, which seemed to contribute to the rapid weight loss over the first few months...
• I don't appear to get the Gleevec fatigue, but I think my running and workout routine continues to mask it.
• I have minor edema under my eyes (barely noticeable) and in my saliva glands (my super-thin neck shows the symmetrical retention of fluid - a little weird looking).  And over the past several weeks, I have developed a swollen left ankle at times .... it can be painful, but some days it doesn't swell at all.  At first I thought I might have injured it from running, but I took some time off and it didn't help.  Oh, and Saturday's 9.5 hour return flight definitely didn't help.  My ankle was quite swollen even though I walked up and down the jet and stretched my legs every 1.5 hours.  Any others getting edema in their feet / ankle(s), and if so, do you have a solution that works for you?  I'm wondering if I should start scoring the pills taking 200mg in the morning, and 200mg in the evening to see if that helps, but something about breaking up the doses makes me nervous, especially since I like to have some red wine in the evenings.  Thoughts anyone?
• I do get night sweats now and then, and they seem to flare up when I don't get as much sleep or when I'm working hard.  I've pinged others on the board about this and it appears to be a case of the "CML sweats".  I still don't understand why it happens though.

Thanks in advance for any comments and/or feedback, and now it's on to the one-year point in April.

[GerryL]

Hi Dan,

No issues with bilirubin levels.

My metabolism doesn't appear to have changed any - not losing any weight or putting it on, though I did increase my exercise regime a little bit.

I don't have the Gleevec fatigue, but perhaps I had slowed down prior to being diagnosed anyway due to the anemia. I notice I do have more energy nowadays, perhaps I now have iron stores in my bone marrow.

Gleevec can cause fluid retention - it is one of the side effects I get. When I mentioned to my doc that one ankle was worse than the other, he asked me if I had injured it, as that could impact the circulation. Airplanes will give you fluid retention, plus the food they serve can have hidden salt. The further you get away from the basic ingredient (as in processed food) the more likely it will have salt. My suggestion is keep exercising; drink adequate water through the day and check the labels on your food for salt content. If you still have issues, your doc can prescribe a diuretic, but watch your potassium levels if you go on one. Also red wine seems to make mine worse, but I know what I'm in for and I have my fluid tablets ready.

[jjg]

Looks as if you are doing really well...good response, minimal side effects. Fantastic!!!

Wrt your metabolism you did say you significantly reduced red meat which is a pretty big deal so that might be a factor. As long as your maintain your weight now it is pretty healthy for a runner which most likely explains why you are running well. Good BMI is ~18.5-25 and you're around 20 i.e. healthy unless you have a massive amount of muscle but much much less than your average American, or Australian for that matter.  I think that oncologists are used to seeing people get skinny from illness rather than exercise so they get a bit nervous about skinny people. If you are getting a bit of edema you do need to make sure that excess fluid is not too much of your weight i.e. you wouldn't want your true weight to be 140 + 10lb of fluid.

Fluid tablets have for the most part been quite effective for me but because of dehydration / be nice to liver & kidney issues I do not take them on hot days - it's summer down under. I also take them after I have rehydrated from morning runs.

Dose splitting is something that is  on my mind also from a side effects point of view - I'm having major fatigue in the hours after my dose which given that I'm now on 800mg up from 600mg to try and batter me into PCRU is not that surprising. I'm somebody who would rather deal with something hard once rather than something less hard twice. I'd  like to know if having a single big peak verses two smaller peaks is more effective treatment wise. I suspect that nobody knows so people have just been going with what ever reduces side effects. I did split 600/200 for a while and can tell you that the 400 pill splits well with a pill cutter. For me the 200 was a doddle but the 600 with still having higher plasma levels was so similar to taking 800 that I went back to the single dose. I absolutely should also test 400/400 but for some crazy reason like you I'm nervous.

[Happycat]

Sounds like you are doing really well!  I've gone in the opposite direction weight wise.  I've gained a good 15-20 lbs since dx'd, very frustrating. Can't seem to lose it either.

For me, it has gotten bad enough that I will ask to get my thyroid tested on my next doctor visit. My mother had her thyroid go haywire in her mid 40's, so prudent for me to get it checked.

Anyway, thyroid problems are something to consider, especially if it runs in your family. 

Traci

[scuba]

Hi Dan -

In answer to your question about my Curcumin routine. I have been taking five 700mg Curcumin w/Piperine capsules for over six months (following a much higher dose of a lower bio-available Curcumin the previous six months) and have recently added 250mg trans-Resveratrol to my diet. In addition I take a multi-vitamin and 1000mg Vitamin C per day. Each 700mg Curcumin C3 capsule is equivalent to 1800mg regular Curcumin. Dr. Aggarwal of M.D. Anderson recommends at least 8grams regular Curcumin per day for cancer. I take less of the other kind that has a higher bio-availability.

I go for my 3-month PCR this Friday.

I am hovering around MMR (0.1% PCR) and will be quite interested to see what my level is after the tests return - probably by mid-February. M.D. Anderson takes a long time to get tests back. I am also curious what my CBC levels are since I no longer have them taken once per week like I had to before. Now I get my CBC when I get PCR - so it has been three months since I have known what my WBC, RBC, etc. are doing. I feel fine - energetic in fact, like I used to prior to dx. If it wasn't for the test dates and visiting M.D. Anderson, I would not know I have CML.

It is important to note - that I take only 20mg Sprycel daily and may explain the lack of side affects and other debilitations. Although Dr. Cortes has many patients on low dose Sprycel (20mg.), I have had a very rapid response in his view once I was able to take it daily (post severe myelosuppression) (dropped from 55% PCR to 0.1 in seven months). I am one of his 'outliars'.  There is some evidence that Curcumin augments the effectiveness of Sprycel (colon cancer and other studies) and exhibits anti-tumor properties: http://www.ncbi.nlm....les/PMC2914279/). Based on my reading, I believe Curcumin puts negative pressure on CML cell division - it causes apoptosis in CML cells. Until proper scientific trials are conducted with respect to CML, no one knows for sure. If my PCR this month comes back zero or much much lower (i.e. 0.001), then I will be a believer.

[LivingWellWithCML]

Wow, that is fascinating - thanks for the update Michael, and I'm happy to hear how well you're doing.  Is the Curcumin augmentation specific to Sprycel, or for TKIs in general (i.e., I am on Gleevec, so would Curcumin be a reasonable thing to try?).

What do you eat/drink with your Curcumin to ensure the highest possible absorption?

[scuba]

Curcumin is fat soluble. I neglected to mention that I also take an Omega-3 fish oil supplement when I take Curcumin. I don't know if Curcumin + other TKI's are synergistic. I suspect they may be. Here is the original paper on Colon Cancer regarding Curcumin plus Sprycel (Dasatinib): http://www.ncbi.nlm....pubmed/20473900

I cross my fingers on how well I am doing. Until I see another log or two drop in PCR and I receive a clear cytogenetic report (no abnormalities in Ph negative cells) at next bone marrow, I am not out of the woods. But I like my approach and feel I have a shot at getting ahead of this disease.

p.s. Additional research on Curcumin affect on bcr-abl cells alone: http://www.ncbi.nlm....pubmed/16849521

[tiouki]

Hello Dan, glad to see you are doing well, your results are great you are very close to MMR, plus with minimal side effects

Thank you for the report, and I am sure you'll reach MMR at 1 year!

Pierre

[LivingWellWithCML]

Hi,

The BMI calculation is really helpful and it seemed to put my mind at ease.  Thank you!  The level of edema I have "feels" minor, so hopefully I am not 10 lb of excess fluid.  Because of scheduling issues, I won't see the CML specialist until mid-late February, but it's weird -- now that I have my numbers, I am not as interested in being 'reminded' about CML further by having to pay a visit to a cancer institute ... And I'd only be 7 weeks away from my next blood draw.  If it weren't for the co-pay that I'll have to make anyway, I'd probably just cancel.  Anyway....

That is also interesting about the dosage split.  I am just afraid that I will screw up the plasma concentration levels, but I don't think they run that type of test at Emory, so I wouldn't know for sure.  The side effects are bearable for now, so I think I will stick to the routine at least until the next draw.  Thanks for your input there ... The 400mg pill looks like it'll score well if I choose to do that.

I really appreciate everyone's feedback!

[Trey]

Your bilirubin increase is only at the "upper mild" level.  It is unknown why Gleevec causes increased bilirubin in some people, but it can.  Bilirubin levels can be influenced by a variety of factors, so an exact relationship cannot always be determined.  Your exercise regimen may cause greater swings in bilirubin at certain times of the day than for those who do not exercise.  Overall I would not be concerned unless it takes a significant spike upward along with ALT or AST. 

Your inability to gain weight may have some root in the Gleevec impacting metabolism in some way, but of course the drastic change in diet away from red meats and alcohol (both of which have major calories) and increased exercise are contributors.  Your blood cell turnover is now down to fairly normal levels, so that should not sap energy much at this point, although it can early on after diagnosis. 

The ankle could be a very low level sprain or overuse issue, and could be related to the impact of Gleevec on connective tissue healing.  I had this issue for the first year or so, and then less so.  The body seems to find ways to adapt over time to many of these types of issues.

[LivingWellWithCML]

Thanks Trey - this is really helpful.  I'm starting to think that the ankle/foot is a minor injury and not directly related to treatment, so I'm just going to take some extra time off from running to make sure I get healed up well.  I started to move my Gleevec dose from breakfast to lunch, but I changed my mind early this week, because I really don't think it's a factor.

I'll see the CML specialist in a couple of weeks, and he's going to run another CBC/CMP, so we can check the bilirubin levels.  I'm not concerned at the moment, so I'm continuing to have some red wine in the evenings.  It continues to calm the mind, body and soul....

Thanks again -