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Newly Diagnosed CML, (Starting Tasigna) Advice Appreciated :)


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#1 kmcomer

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Posted 12 January 2014 - 09:37 PM

Hello All-


Well I so wish I didn't have to register and join these discussion boards, because that means I'm in the same boat as many of you or your families.  I was diagnosed with CML on New Years Eve, and just decided along with my wonderful Oncologist that we will be starting Tasigna as soon as the insurance battle is over.

I was able to get through my first Bone Marrow Biopsy, which was not a pleasant experience, nor did I expect it to be, but certainly really struggled to hold it together and not move.  My doctor mentioned that my bones are young and strong, I am only 34, and it makes it much tougher.

So I was hoping to talk with someone else who has CML, has suggestions about getting through my next BMB I have done some reading about doing it outpatient at the hospital with heavier drugs, and that is on my wish list, I don't think I can do it again. 

Also wondering if anyone is taking Tasigna and how its going for you?  What side effects do you have, does it get better, I've heard the first month is the worst.  Just trying to see what i can expect.  Any Hair Loss?

I'm very nervous about all of this, but also feel very confident it will get better and very positive about the long life ahead of me.


Any help, thoughts, advice or support appreciated.

xx

KC



#2 mariebow

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Posted 12 January 2014 - 09:55 PM

  It was two years ago this month that I was diagnosed with CML and had many questions and some fears.  This site with all the contributions made me feel easier and assured me that  I can get through this.  My first BMB was horrible and gave me PTSS.  The onc said my bones were very thick.  Well the next one I was sedated.  Tasigna has been a good drug so far and has gotten my into remission.  I was worried about the hair loss also, but the onc said it will not cause to lose hair and I did not.  I have the itchy scalp which you can get shampoo or ointment for it if you have it and I have dry skin. 



#3 kmcomer

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Posted 12 January 2014 - 09:58 PM

Thank you for taking a moment to respond to me, I really appreciate it. I

For my first BMB, I just took 2 Tylenol and a Xanax for the first one, but that just won't do the trick next time.

Wishing you all the best   xx



#4 mariebow

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Posted 12 January 2014 - 10:20 PM

The first one was a shot of lidocaine as a topical anesthesia.  But I have to say some people say it was not that bad for them, that wasn't the case for me.



#5 chriskuo

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Posted 12 January 2014 - 10:24 PM

Normally, BMB is done with a local anesthetic.  You have almost 6 months before you face your 2nd.

After a year on Tasigna, I switched back to Sprycel, primarily because Sprycel was more effective.

Also, I did experience some side effects on Tasigna, making my hair frizzier and whiter.

The regimen for taking Sprycel is also easier than the twice a day (but not at meals) with  Tasigna.

I wish you the best with Tasigna, but know that there are several other options.



#6 jjg

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Posted 12 January 2014 - 10:45 PM

Hi KC, Sorry for you to be joining us. It's normal to be nervous about the CML and the medication but most of us are doing well. I was a couple of years older than you at dx (Dec 2010) and while my life has been altered by CML (mainly the side effects of the meds) it is still pretty normal.

Some of us are lucky enough to only have one BMB - it depends on your response to treatment and the protocol your doc is following. By the time I would have been due for a second BMB the treatment (Glevec at that stage) had done a great job and there would have been nothing to see in the bone marrow - this was indicated by my PCR (done from blood) which at that time was < 0.1%. Some doctors will do a BMB in that case just to follow protocol.

I'm on Tasigna now and it has treated me pretty kindly. There were additional side effects in the first few months but they were so much better than on gleevec that I was very happy. The main things for me were flu like aches and soreness. I did loose up to half my hair but I think that this was mainly during the drug before tasigna and a year later it is thickening up again. You might see lots of hair falling out but very few people around you notice unless you loose much more than half or in a distinct patch - this is rare for tasigna. I now have very dry skin and occasionally some weird rashes but nothing exciting. Probably the most common side effect with all the TKIs is fatigue. Tasigna is way better than gleevec for me with fatigue but it is still there. You just have to learn to manage it. Sometimes a 30min lie down will allow you to be productive for the rest of the day.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#7 IGotCML

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Posted 13 January 2014 - 12:07 AM

Hello, KC.  I was diagnosed in December, 2012 and have been taking Tasigna for 1 year.  Regarding the BMB, I had mine done in a hospital, with a very effective local anesthetic.  Comparable discomfort as a dental procedure.  I didn't ask, or care, about the name of the anesthetic they used.  I had more discomfort the next 2 days after the BMB than during the actual BMB.  Like, jjg posted above, my onc did not give me another BMB, due to the positive response I have had with Tasigna.  My blood counts were back to normal in 3 months after starting Tasigna.

Are you in chronic phase?  What was your white blood cell count when you were diagnosed?  Are you taking Hydrea until you receive Tasigna?

You are correct that the side effects will be very noticeable the first month, as you will be destroying a lot of leukemia cells if the Tasigna is working as it should.  I had bone pain, headaches, hair loss including most of my eyebrows, body itching, scalp itch, dry skin and facial rash the first 3 months. All my side effects were manageable.  Now the only ones that remain are scalp itch, dry skin and facial rash, and the rash can be controlled with sunscreen.  I also have had male pattern hair loss for the last 20 years, so losing a little more hair was no big thing for me.

A big adjustment for Tasigna is scheduling your eating around it because it must be taken twice a day on an empty stomach.  That information will come with the drugs.  Also, you need to have sufficient magnesium and potassium levels for the Tasigna to be effective.  Has your onc discussed that with you?  Start looking now for foods that have high levels of magnesium and potassium and you will want to eat on a daily or very regular basis.  I also take a daily magnesium citrate supplement to make sure I don't run low.

This might sound obvious, but you should scale back your life's activities as much as possible until you work through the side effects and any other reactions you may have.  All the drugs that treat CML cause fatigue and each person has a different level of reaction.  I was very physically active prior to CML and I have not gotten close to my pre-CML energy level.  I can't measure how much is due to the Tasigna, but it certainly has an impact.



#8 kmcomer

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Posted 13 January 2014 - 07:45 AM

I'm seeing that everyone seems to respond differently.  My uncle was diagnosed with CLL in March and has had several BMB and he said its no big deal at all....I do consider myself to have a high tolerance of pain, but Yikes! 



#9 kmcomer

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Posted 13 January 2014 - 07:46 AM

Thanks for the response, I agree the 2 times a day regimen will be a little rough, but hoping for the best.  I'm thankful if this doesn't go well that Sprycel would be my second choice.



#10 kmcomer

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Posted 13 January 2014 - 07:49 AM

I've been resting a lot now and very fatigued even before starting my Tasigna, but hoping I will be feeling a little better.  I am still becoming familiar with all the terminology, etc.  I am not sure what my recent PCR was but will ask when I go back   Sounds like my onc said I would see a good quick response and I am so hoping i don't have to have BMB at 3, 6, 9 and 12 months post diagnosis as originally thought.  If I do, I will definitely be fighting for more options for pain management....



#11 kmcomer

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Posted 13 January 2014 - 07:55 AM

Thank you for your reply   I am in the chronic stage and just waiting for the BMB results to confirm less then 10% of the cells are blast cells, but all signs point to chronic.


I felt down for a year, etc., and went for a routine checkup and lab draw.  My WBC for the past 7 Novembers has always been 4500, 4300, 4600 and when I initially went it came back 16000.  We redrew in 2 weeks and it was 19000 and now I am up to 26000.  I'm not taking Hydrea, and hope to start the Tasigna this week   Did you discover your WBC was high during a routine check up , or had you had other symptoms as well when you were diagnosed

It sounds like side effects were different for everyone so I am going to try and take it as it comes.  More worried about the prolonged QT Rhythm, and get my first EKG today prior to starting med.  Not looking forward to the possibility of losing my hair if that happens, but it is what it is I will be alive.


My onc did mention the potassium levels, etc., and I will be getting frequent labs drawn to monitor, but we haven't talked about supplementing it with diet and vitamins...This will be helpful for me to discuss with him this week, so I appreciate the heads up

This has been such a helpful discussion and I look forward to sharing our ideas over time

Wishing you a great week!



#12 kmcomer

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Posted 13 January 2014 - 08:03 AM

Also meant to ask if any of you have site's on Caring Bridge or did when you were first diagnosed?  I set one up as a way to keep those informed and keep cancer updates off my Facebook page, but would love to read other's pages if you have one, please share.



#13 Ray99

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Posted 13 January 2014 - 10:23 AM

KC,

    Sorry to hear about your CML diagnosis.  You have joined a group that will help you through the treatment.  Post any questions and concern you have and you will always get helpful responses.

    I have been on Tasigna for about 22 months now.  The side effects have been minimum, occasional muscle cramp and joint pain.  My hair did thinned out noticeably, but no bald patches yet.  The twice daily dose is inconvenient but manageable.  I take it at 10am and 10pm using cell phone alarm as a reminder.  It works pretty well.

Ray



#14 August1

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Posted 13 January 2014 - 10:52 AM

Hi KC,

Welcome. I was diagnosed about a year and a half ago. I am 43 years old and presented with general fatigue and weight loss. Had no idea what leukemia really even was at the time. My WBC was 240,000. I started on Gleevac and now take Sprycel. Overall the side effects have been pretty manageable. I do have some fatigue but overall I feel pretty good and live a great life with family and friends.

I only had one BMB at diagnosis. They gave me some morphine and ativan for that which helped a lot. I have not had to have another one as my oncologists are OK with monitoring my PCR levels every three months. As you'll learn, in addition to your regular blood counts, your PCR reading will be your "gold standard" value to gauge your response to treatment. So it's an important number to know.

If I could offer any advice it would be to understand that as you start on this treatment your body will be going through some adjustment to find a "new normal." It's different for everyone so no case is 100% "typical." All of the TKIs have various side effects, such as fatigue, joint and muscle aches, rashes, etc. Most of these effects are very manageable for the majority of people. I have not had a problem with thinning hair (other than what normal genetics would dictate ). Either way, you won't lose your hair like many do when being treated with traditional chemotherapy.

I find a lot more value in hearing from people, especially others on this board, who can provide perspective and experience rather than relying on Internet statistics. This is a great board and I would encourage you to use it. There's also a lot of good information out there including a blog by Trey who is one of the members here as well. Check it out here: http://treyscml.blogspot.com/

Feel encouraged that there are excellent drugs to treat this condition. If Tasigna doesn't work for you there are several others that may (including Gleevac and Sprycel). The key is finding the drug that you respond best to and provides the most manageable side effect profile for you. Combine that with your age and the fact that you caught it in Chronic Phase with a relatively low WBC you should be in great shape.

Wish you the best,



#15 Frogiegirl

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Posted 13 January 2014 - 01:35 PM

Hi KC!   I too had to join this group not to long ago. Diagnosed on 10/22/2013 with CML. I am taking tasigna and have been for almost 11 weeks. Its not bad, the side affects are manageable, I did cut off 28" of hair because I thought it would be easier on me emotionally to lose short strands then extremely long strands if it were going to happen. I have thinned out quite a bit, my boss told me I could wear a hat if it bothered me to bad. I haven't done that yet. I too am a young one, 31.  I found that my fatigue is also less on treatment then it was before treatment. My white blood count was 128000 when diagnosed. also I do get the face rash but they are more like small small bumps that you can only see in certain lights at an angle. kind of like slightly  raised hives. I take my meds at 3 a.m  and 3 p.m and it seems to work out pretty well. I like my coffee in the mornings when I'm getting ready for work.  I have my second BMB coming up in February and will be given morphine and adavan, which I have heard will help. The first one was just a local and it caught me off guard. I think the doctor and nurses use the first one to gage how well you will do and if you need further pain meds. I did not like my first one to say the least! I said naughties In front of my mom This sight has been fantastic, and I am so glad I joined. As I am sure you will be too


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.


#16 tazdad08

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Posted 13 January 2014 - 02:23 PM

Hi KC. I have been on Tasigna for.....Crap, I cant remember..but about 1 year. I was Sprycel first. I am prescribed 400mg per day. I have only been taking 200mg per day for about 4 months. I was hoping to ease some of the side effects by doing this. My wbc counts are slowly rising.... looks like 400mg are in my near future. The side effects for myself have not eased up any. But don't let that discourage you. I have seen lots of posts from people that are almost "normal" again. My fatigue, pain, and memory issues have forced me to file for disability


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!





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