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So why am I still down??


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#1 cmljax

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Posted 31 January 2017 - 12:50 PM

I had my regular 1 month appointment yesterday with my onc at Mayo.  I am a 63 year old male and was Dx 4 months ago and have been on Tasigna 600MG since 10/5/16.  Just 83 days later, my PCR showed that I had reached MMR. I have had many side effects, but most have dissipated. I still struggle with IBS-like symptoms.  I don't know what physical side effects are from the Tasigna and what are from the heightened levels of stress and anxiety that we all deal with.  Worst concomitant medical situation was a rash of SCC skin cancers and precancerous legions during the first 3 months of treatment, but these have slowed significantly over the past 3 - 4 weeks.  None of my docs knows for sure if the skin cancers are due to Tasigna or suboptimal immune system or some combination. Hematologically,  I have mild glucose elevation (112 - 118) and mild indirect bilirubin elevation (1.3).  These 2 are certainly due to Tasigna, but are clinically insignificant according to my onc.  In fact, he called my labs perfect yesterday.

 

My onc also said we will be going to labs every 3 months now and if I continue to stay at MMR or better, we will eventually go to 6 month labs.  He said that I am tolerating the Tasigna quite well and that only about 10% of CML patients on Tasigna reach MMR in 3 months.

 

I am thrilled with my results and my overall condition right now.  I am happy that the lab frequency is slowing down as waiting for these results causes the most anxiety for me.  So why am I down today?? I should be jumping up and down on the rooftops. My incredibly supportive wife says that I still know I have leukemia and many things can still go wrong down the road.  She is of course right, but I'd like to know if others who have done well on treatment have these periods when they are still down and still anxious.  Please share your experiences.


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


#2 scuba

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Posted 31 January 2017 - 01:09 PM

CMLjax - You are doing terrifcally! Your CML was caught early and Tasigna is working very well. You will likely continue your trend downward (another log drop from 0.1% to 0.01%) to near PCRU. You may even fall below detection.

 

What I found helpful is to think about having goals regarding your health overall. Should you reach PCRU quickly, you may not need such a high dose of Tasigna to keep you there. Discuss with your doctor dose modification (reduction) as a strategy to balance side effects with CML management. Over time  you will not think much about CML except when you go for your blood tests.

 

Know this ... CML is a very manageable disease. There are many options. And when caught early (as in your case) with great response (as in your case), you will die of something else - not CML. When I thought about that, I realized I needed to focus on my overall nutrition and health and family history. I think more about coronary health as that is what trends in my family. CML is not going to get me. I am at more risk to heart attack or stroke than I am CML. So I focus on those factors (and have been successful so far). If there is anything "good" to say about my CML diagnosis, is that it opened my mind to focus on health much more than I was doing before. 


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"


#3 chriskuo

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Posted 31 January 2017 - 03:14 PM

In the first few months, dealing with the diagnosis and initial treatment can be all consuming.  As soon as you can, start engaging more and more with your previous or new activities.

 

We had a big international trip planned for less than 2 months after I was diagnosed.  The encouragement of my hematologist to go on the trip was great support for me to believe I could live an active life.  Because my hemoglobin was still somewhat low, I was not able to participate in some of the most strenuous activities on the trip, but my overall experience was great.

 

So basically, you need to shift your mind and body in engaging in things other than dealing with CML.



#4 kat73

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Posted 31 January 2017 - 05:12 PM

cmljax - I think your wife is on to something.  It's hard to be grateful to have cancer!  And that is the uncomfortable paradox CML offers:  yes, we are lucky to have this one, with the treatments we have today - but still, it's CANCER.  And CML hasn't been proven yet to be curable.  The treatment track record is short - no one knows what the future holds - the future looks very, very good, as Scuba points out, but still.  You worry.  Another disconnect is disconcerting - it's hard for people to understand that you're sick, but you're sort of . . . not sick.  Our "chemo" never ends.  We look mostly OK, we function mostly OK, but we struggle with side effects daily . . . and forever.  (Although, some will abate, and yes, dosage reduction will help, too.)  It will take time for you to wrap your head around this whole CML deal.  We have all contended with those down feelings, that's for sure.  You may decide it's better for your mental health to keep up a cheerful front with the outer rung of your public, but definitely don't keep your feelings in from your more intimate circle, or yourself.  There's an existential hurdle to get over, and there are very normal fears and anxieties, and there will be zigzags in the path ahead.  Your life has changed - hopefully, not by too much - only time will tell by how much.  Everything you feel is normal.  Keep communicating those feelings.  Ask for help, too.

 

The central difficulty I have had in the past 7 years since diagnosis is teasing apart depression and anxiety (along with fatigue and fog) from physical side effects from the TKI's.  Especially in the early days, where you are.  Do you feel down because Tasigna's side effects from off-target hits on your cell systems makes you feel physically bad, or is it actually causing depression?  Or is the depression simply emotionally/mentally generated because of your situation?  Depression and anxiety are very rare side effects for the TKI's - you don't often even see them listed, and if they are it's usually way under 1% of patients affected.  Tasigna is supposed to have a pretty good side effect profile.  I believe it is structurally most like Gleevec, though, and I had a lot of trouble with Gleevec that was vastly improved when I moved to Sprycel, which works differently.  You could just be one of those people who do better on Sprycel.  Just something to think about going forward.

 

What I remember finding least helpful in those early days was my onc grinning wide and assuring me I was doing GREAT! and that most people tolerate the drugs very well, and handing me prescription after prescription for stomach remedies, anti-anxiety pills, diuretics, etc.  But I felt lousy and sick, terrible, different, I looked awful, felt helpless, hopeless, weak, exhausted.  Nothing got better, instead it seemed new problems kept appearing on top of the old ones.  I felt as old as the hills and like I couldn't trust any part of my body anymore.  And very, very down.  Early days - ah! don't miss 'em!

 

I guess what I am saying is, what you are feeling has been felt by all of us at some point and to some degree, so you're not weird or anything - but that you should continue to be observant of yourself and not settle for any permanent misery of an unbearable nature.  Things should get better - if they don't, keep communicating and keep the pressure on your onc to solve the problems.  I stuck it out for two years of incredible misery before switching drugs and getting some relief. 

 

Since you asked in the context of people doing well with the CML while still experiencing being down, I'll tell you that I had a swift response to Gleevec, hit the targets at a reasonable pace, improved steadily on Sprycel, and today I have been stable at a very low level (below MMR) for 4-5 years.  I've lately been under or just at my lab's level of quantification, and had one PCRU.  My troubles under the Gleevec regimen were extreme malaise, diarrhea, depression/anxiety, fatigue, periorbital edema, loss of skin pigment, mouth sores, skin cancers, chronic renal insufficiency - yes, from the Gleevec - for which I also have to be treated for secondary hyperparathyroidism.  On Sprycel:  skin rashes (gone), pleural effusions, continued trouble with depression and fatigue, but much less.  All the other Gleevec stuff (except the loss of skin pigment) was completely gone on Sprycel, except the kidney damage was permanent.  I'm 65, female.


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.


#5 Antilogical

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Posted 31 January 2017 - 06:25 PM

cmljax - Welcome to the "Club".  As others have stated, in time, you'll think less about CML and more about other stuff.  I knew I had turned the corner when I realized that I thought more about chocolate than CML.  Yeah, ok.  Wine, too.  Mostly.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#6 tiredblood

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Posted 31 January 2017 - 09:35 PM

For me, I felt down when I felt bad from side effects and fatigue. My side effects would wax and wane-- bad when several occurred at the same time. Couple that with being told "I don't think it is from the CMLor TKI," when I know the things I've experienced are certainly side effects. I was on Tasigna full dose for IIRC, about two years. Then, reduced the dose to half. Had side effects still, then switched to a half dose of gleevec and feel much better. Thankfully, my new doc listened to me and helped me navigate side effects. My doc looked so happy yesterday when I told him I feel better ๐Ÿ˜Š

If I understood my doc correctly yesterday, it was good I was on Tasigna (Sprycel being another preferable choice) full dose reaching a deep molecular response before decreasing the dose and even changing to half dose gleevec.

Sounds to me like you're having the desired effect of the Med in helping your CML. Hang in there, then, maybe later, you might could reduce your dose.

#7 IGotCML

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Posted 31 January 2017 - 11:45 PM

I have been on Tasigna for 4 years and also had effective results (MMR after 9 months). I have had not any anxiety regarding CML once my white blood counts got back in the normal range a few weeks after starting Tasigna. That is mainly due to the very helpful information provided by LLS and the outstanding CML community that posts on this board.

 

I do get down on occasion because of dealing with the fatigue and side effects that comes from taking Tasigna twice a day. I am in my late 40s and there are a few days each month it is very difficult to wake up and get going. My mother recently retired from being a school bus driver and she would would wake up 4:30 daily to start driving at 6AM. There is absolutely no way I could do that because of Tasigna. However, those down times are quickly reversed when I realize that I have survived cancer and CML is very unlikely to kill me.

 

You have been fighting two malignancies over the last few months which is a lot for anyone to handle. Have you had an opportunity to utilize any mental health resources at your oncology center? I am thinking they will be able to assist you with your emotional reactions to your treatment.



#8 cmljax

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Posted 01 February 2017 - 10:36 AM

Wow - where so I start and how do I begin to thank everyone who responded.  Well, let's go in order:

Scuba:  I know logically that I will almost certainly not die from CML, but when I read about mutations and others who lose response, I still worry.  But, like you, I have stepped up my exercise to 1.5 - 2 miles a day on treadmill at average 4 mph and I have completely changed my diet to 90% plant-based and organic (I still have a couple of farm fresh eggs every morning).  I have had to rely on my wife and her family for support which has been incredible.  My wife is amazing and our already deep relationship has only gotten deeper since my Dx.  I have not told any in my family because I do not want my 98 year old Mom to know.  She lost Dad a year ago and has adjusted well, making new friends and enjoying life (she just bought a new car - where were her genes when I got my first Philadelphia chromosome?). Knowing I have cancer would just worry her to death.

Criskuo: Great advice. I want to start playing golf again, but even with sunscreen, I am concerned about sunburn and more skin cancer.  My wife and I are doing more things together, but I do need to return to my life before CML to the extent possible and will work on that.

Kat73: Your side effects from Gleevec sound much worse than mine so far from Tasigna. I believe the anxiety and occasional depression are not due to Tasigna and I am still unsure about the skin cancer. In any event, my side effects seem much more tolerable than yours, so I am going to stay on Tasigna for now - just too soon to switch meds.  I started probiotics and digestive enzymes recently which I hope will help with the moderate GI issues I am still experiencing.

Tiredblood: I definitely want to try dose reduction when the time is right, which for me will be at least no worse than 4 log.

Igotcml: I have seen the psychologist at Mayo twice - he recommended relaxation exercises - I try to do progressive muscle relaxation at least 5 times a week - it helps a bit.  He also recommended Mind over Mood cognitive therapy book. I am about halfway through it and there are some helpful things, but they are more geared to anxieties other than dealing with cancer Dx.  I am much better than I was 2 months ago, so at least the trend is right.

 

Bless you all and thanks for the support and thoughtful responses


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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