I was recently diagnosed with CML and started Tasigna 3 weeks ago. Have had some of the common side effects but pretty minimal. I wondering about how everyone deals with the stress and managing your diets etc. in this marathon were in. My wife was diagnosed with Medulary Thryoid Carcinoma two years ago which is a particular rare and fast moving thyroid cancer which she survived. Just some thoughts would be great. Thanks
CML Stress Management
Posted 14 February 2013 - 09:40 PM
Hi bizweep and welcome.
Stress will reduce over time. You are so new at this it's ok to feel stressed. It is a life changing event but most of us will go on to lead pretty good lives. I don't really remember how I coped with the stress in the first few months which probably says something about the state of mind I was in (and the fact that there were also two huge life events going on around me, one terribly sad and one fantastically happy). In a way life just keeps going and one day you wake up and realize you've gotten used to having CML. That doesn't mean you like it. Don't rule out counseling and stick around this site. Some people find knowing as much as possible about the disease helps - that's me
As to diet - one thing I don't stress about at all. Ok so don't eat grapefruit and be very careful (talk to your doc) about taking supplements - easy. If you want to change you're diet to be more healthy great, but its not something you have to do to beat CML. The way the TKI (tasigna) slots into your mutated cell does not care if you had McDonalds for breakfast. Of course your arteries care... Some of the TKIs cause stomach problems (my tummy didn't like too much dairy on glivec, but with tasigna it is fine) and diet can help there.
Glad to hear your wife is doing well. All the best to both of you.
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
Posted 15 February 2013 - 08:32 AM
I won't be running out for a happy meal anytime soon and sincerely appreciate your input.
Posted 15 February 2013 - 01:15 PM
I just finished a glass of red wine and a nice homemade lasagna dinner
I added more fish, fruit, and vegetables in my diet, but i enjoy the things i enjoyed before i got sick as well. I just try to tweak my diet a bit for overall health reasons, but nothing major. Oh, and i try to go for a daily 30-40 minute walk, just to keep my body fit. For stress, a glass of red wine is good for me, but knowing this disease is very much treatable, and the odds of us surviving are so good, help me a lot as well. There are of course downs for me as well, but it gets better over time.
Posted 15 February 2013 - 01:22 PM
I personally don't think of my cml very often. There are so many treatments available now that your chances of dying from cml are remote. Side effects can be a pain, but I've never missed a day of work because of them (and I had some pretty bad pleural effusion when taking Sprycel). I was in your boat a few years ago. I wss diagnosed in August of 2009 and then my wife with breast cancer in October. My wife is fine now, and I've been bouncing between a 2.5 to 3.5 log reduction for a few years.
Posted 15 February 2013 - 01:56 PM
Welcome, and I hope that you make good use of this forum, as you are already doing!
My 2¢ is that it is helpful to make changes easily, not to strain to do everything all at once.
Moving in a direction of healthy eating (local, organic being best it seems) can be a work in progress, with the concept that we are what we eat: to me, the benefits of natural foods (eaten by all earlier generations) vs genetically modified foods (no long-term data on their effect on life) being roughly equal, say, to putting in premium products to the car: the evidence shows things just run better
For stress management, I have enjoyed 40 years of the practice of TM (Transcendental Meditation), and I feel it has been a huge benefit in my CML journey.
All the best to you and your wife,
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 15 February 2013 - 10:19 PM
It will get better after the 13.1 mile marker. After that it is all downhill.
Posted 16 February 2013 - 12:40 PM
i was diagnosed last September so am still early in this journey. I had a breast cancer diagnosis in 2009 (some people have all the luck!) and my husband had testicular cancer in 2011. i had changed my life after the first cancer so this was a shock to me, especially as my disease appears to have been diagnosed later than most people. i have been angry and scared. However, the changes I have made this time are more psychological. I have let go of the resentment that life events caused me to feel for many years, and have become more forgiving and a less harsh critic. i have been reading the work of dr bernie siegel and believe that the key is to take as much control of your destiny as you can.
This is a giant wake up call and i plan to make the most of all my good days. I think you carve out a new and different 'normal' for yourself.
all the best with your treatment and best wishes to your wife too.
Posted 16 February 2013 - 09:19 PM
bizweep, as others have stated the stress does calm down..When I was first dx, my Onc gave me meds that hit me hard to get my counts down so I could go on Gleevec. I was deathly sick and and on top of all the sickness everything was going on in my mind that I didn't have long to live and I had so much that needed to be done. I had to get my affairs in order so my kids could handle things and know where everyting was. Stress was major. After a few months I was on Gleevec and my numbers were getting much better. I did go to my atty and have papers done so my kids would not be in the dark when it did happen but now I feel so much better and my life is almost ( well not quite) like it was before but the stress is really down to a minimum. I believe the kids won't have to use those legal papers for a long long time. Hope you get rid of the stress really soon and get back to living.
Posted 17 February 2013 - 12:01 AM
That's for your advise. I'll be working in the garden more often down here in Florida I have plenty of opportunities to do that.
Posted 17 February 2013 - 12:03 AM
I'm starting to do Yoga from the home yogalearningcenter.com thank's for the
Posted 17 February 2013 - 12:11 AM
It was an initial shocker that I'm coming to the realization that it came be managed very effectively. I understand about getting things in order. Lost a daughter at 9 years old then both of us get cancer within 2 years. I've been riding to raise money for cancer research the last several years just another reason to get back on the bike.
Posted 17 February 2013 - 10:22 AM
bizweep You have my sympathy on the loss of your daughter. Cannot imagine what this must be like. I lost my spouse to cancer in 2003 and the grief process lengthy. To loose a child is more than most parents want to even think about. In reading your comment on raising money for cancer research I thought of years ago when I solicited from my neighbors for the Luekemia Assc. Never dreaming at that time I would one day be a victim of the disease. We just never know what our future holds and we should live life to the fullest everyday. You have inspired me. thanks, Barb.
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