Starting Treatment Monday! What can I expect?

I was diagnosed Oct 17, and started Dasatinib Nov 17.  I am just about to take the 6 month blood test.  I was worried sick about starting the drug because of what I read about the side effects.  The side effect list is endless and scary - moving from death to hair loss and back again!!  

All I can say is drink loads of water - I drink at least 2.5 litres a day, often more.  I take my tablet at breakfast, with food.  I don't drink tea or coffee (decaf coffee only, and fruit tea) and I have a maximum of one glass of wine a week, often less.  I also walk the dog for an hour each day.   I watch my diet and try to eat healthily and I avoid all junk food/fatty food

I get very bad bone pain, but take curcumin and magnesium supplement which helps both pain and fatigue.  I also get a weird spaced out feeling every now and then, and also, periodically, all the migraine symptoms without the massive headache (achy neck, poor vision etc).

All I can say is that I am happy with dasatinib.  We all have a fatal disease and this amazing little pill keeps us alive.  I feel relieved that these are all the side effects I get!  My advice to you is don't worry.  Just deal with each side effect as it comes up, and listen to others with the disease on all the forums that you can.  

Ok I tell the total 100% truth and all the people on here a amazingly nice but no one tells the truth. I've been on Gleevec for 1yr and now on Tasigna for 4 weeks. I can tell you they all suck. Either you will get all the side effects or barely any. I'm one of the un lucky ones and I have gotten the bone pain with both Tasigna and Gleevec . It's a pain that doesnt go away all day and night. Again I will only tell the truth and I won't candy cote it because it doesn't do any good. I wish someone would have told me the truth from the get go. My Oncologist told me I could live a normal life. That's a lie totally. You can live but nothing about it is normal . I used to lift weights 5-6 days a week. Since I started TKI's I have tried 3 times to go back to the gym and its a no go because my bones and joints hurt so bad I can't lift weights a starter person would lift. The TKI pills are worse than the disease itself but are a necessity to live . I'm just stating the real facts . I have a very high threshold for pain and Oxycodone 10/325 pills don't take the pain away. They only take the edge off. Now maybe my circumstances are way different than everyone else but I don't think they are. I have read alot and I always research everything I do and the TKI pills keep you alive but slowly hurt your body and in reality it's our only alternative for right now which sucks. I just know one thing give it your all and fight hard and you will make it but it will be hard but living is worth it . We all need to get together because for real this disease needs to be cured and please after all these years your going to tell me there isnt a cure ? I think the pharmaceutical companies won't release the cure because then who will buy their $15k a month TKi pills !! Makes me sick . My pills are $15,000.00 a month and that's absurd . How do poor people survive ? 

Philip, when you've had a 9lb baby delivered - now that is pain.  The bone pain I have with CML (and I have it constantly 24 hours a day) is nothing compared to giving birth!

Hello Philip,

Your advice to Francesco is, at best, unhelpful for someone who has just been diagnosed. I understand that your view may come from a place of extreme anger, which is entirely understandable and believe me, I am sympathetic, but your rather harsh statements about truthfulness is not at all reflective of the discussions that take place on this forum.

You say..... "Ok I tell the total 100% truth and all the people on here a amazingly nice but no one tells the truth."  I can say with my hand on my heart that I certainly do tell the truth - as I know others here do - but it is inevitably that is my truth and reflects my own experience. Since my diagnosis in 1998/9, which was in the pre-TKI era, I have been treated with imatinib (600mg) in the first instance and then went on to receive an SCT. Imatinib is a drug that, I am in no doubt, saved my life- and I must add because of that fact, it also saved the lives of my partner, daughter, parents, brothers, nephews, nieces as well as my wider family members (emotional) lives, given that they all loved me and would have suffered greatly,  had I not survived.

I remember very well what it was like to be told that I had approximately 12 months to live if I did not agree to have one of the following.

a. High dose chemotherapy to give me some time to find an HLA donor match for transplant 

b. Should I be fortunate, and one of my 2 brothers was identified as a good HLA match-  a stem cell transplant, which involved high dose chemotherapy alongside full body irradiation. The likelihood of surviving the transplant process - i.e making it out of hospital - was 20% in my case. That is my truth in the context of the year of my diagnosis. I was not angry, I was bereft! 

All the people who founded and have helped run this forum and website since 2000, are CML patients and each of us has a slightly different experience, but I am very confident that we all endeavour to tell the truth. 

I too am really sorry that there is not yet a quick cure for what is a very vicious disease if left untreated. I think it may help you to read about the history of CML and the research behind the development of TKI therapy.  

The lead clinician/researcher of imatinib (TKi) therapy, spent many years working to find an alternative to transplant. He dedicated his life and career to this quest in order to save his patients from the pain and suffering of transplant. I was very fortunate to be treated by him in one of the early trials of imatinib. When I asked him what drove him to continue with his research (which initially had challenged the status quo) he said it was because he had no alternative to offer his patients as a possible cure other than the very high risk option of transplant and he could not live the rest of his life watching his patients die from transplant related causes, or if they survived, live out their lives blighted by transplant related GVHD.

I have visited transplant wards and will never forget how the patients I saw suffered from the effects of that kind of highly invasive treatment. I must say here, that transplant protocols have come a long way in the last decade or so, and there are protocols such as reduced intensity sct (RICSCT), that is not as invasive as the traditional form of transplant e.g. of the kind normally used in acute forms of leukaemia such as ALL or AML.

There is a very good book by Jessica Wapner called The Philadelphia Chromosome which might help with questions about why is there not yet a 'cure' for CML..... although, thanks to some ongoing innovative research and thinking by CML specialist clinicians, for a significant percentage of good responders to TKI therapy, it has been shown that it is possible to achieve TFR, also described as a functional 'cure'.  So, for some, it is possible to maintain long term control of CML and live life treatment free.

Whether that constitutes a 'cure' - as I think a lot of people usually mean it - then that is open to debate, but nevertheless it is good news, especially for younger people who have been recently diagnosed.

There is no shortage of specialist clinicians/researchers who remain dedicated to finding a way to at least get a significant minority of patients in to TFR  by using TKI therapy. Please remember that there is still a small % of people diagnosed every year, who do not respond to TKI therapy and will need to find an HLA matched donor to attempt a possible 'cure' via an SCT.

I hope you take my comments in the same spirit in which I have written them. I am very well aware that there are a minority of people who suffer Grade 2; 3 and 4 side effects from TKI therapy. TKI intolerance for this group of people can certainly be almost unbearable, but I believe this is not the experience (or truth) for the majority of those with responsive disease. It has also been shown (see data from the UK DESTINY trial) that many who have a good response to therapy (MMR or lower), can safely reduce their dose and therefore overcome the most challenging side effects. Maybe this would be an answer for you in the future.

I hope your considerable side effects to both imatinib and nilotinib - constant unbearable pain - diminishes as you go along.  TKI therapy is not 'one size fits all' and it may be that a different TKI such as bosutinib or dasatinb - or even ponatinib-  may be a better fit for you personally. It would be a conversation I would be having with my doctor if I were in your situation. 

As regards to your question 'how do poor people survive'? Well for patients who live in regions where access to SCT, TKI therapy or for that matter, even a simple blood test, is out of reach, then the stark answer still remains even in the TKI era, that in most cases, they don't survive. 

Sandy

I Had kidney stones 7mm stones. Plus Sarcoidosis and Gout in my feet and hands plus the Leukemia. Trust me I know what pain is . Plus I still work a construction job 5 days a week 8 hours a day. If I had a desk job it might not be that bad but I been doing construction my whole life and I support my family so its not an option to quit or get paid less. 

Philip, 

That sounds awful, and a lot of suffering. How much have you talked to your doctor about this? What did they say if you did?

If you have only been in imatinib and nilotinib, perhaps these drugs really don’t suit you. They are quite similar. There are others on this forum who have had the kind of problems you are having. Some have found ways to deal with it by changing drug and for a smaller group that doesn’t seem to do the trick.

You musn’t just accept this as what things will be like. There is a good chance that there are things that can be done to improve your situation.

David. 

Heres what I gotta say about that.
Let’s say you are going to a movie. Your best friend
tells you that the movie is great and your partner says
the movie is junk.

You gotta go to the movie to see for yourself.
Let us know what you think of the movie.

Romo

Philliptibs:

We are all very sorry for what you are experiencing, but you are in the right place for support and truth.  Here's my truth. I was Dx'ed 17 months ago and started on 600 mg/day Tasigna/nilotinib.  No side effects for the first 3 weeks as I quickly achieved CHR.  I though this is great - then all hell broke loose.  From December until March, I had 10 confirmed squamous cell skin carcinomas and 50 other pre-cancerous lesions removed from my arms and legs. Staring around the same time, I developed an irregular heartbeat that was ultimately diagnosed as benign premature atrial contractions (PAC's).  Even though "benign," I would have episodes of these PAC's that were downright debilitating.  I would be completely worn out for days and had continual tightness and discomfort around my chest and middle back.  Then from March through August of 2017, I had 8 episodes of severely swollen salivary glands each followed by 2 weeks of painful mouth ulcers.  Of course, I had many of the other more common side effects including fatigue, benign skin rashes, folliculitis on my head, bloating, gas, irregularity, periods of insomnia, muscle spasms/cramps, mild hair loss, and severe dry mouth.  Until CML, I had never had skin cancer, had a very healthy heart, went to the Dr. once per year for an annual physical and hadn't had so much as a common cold for 10 years.

It was no fun at all, so I feel your pain, even though yours is in a different place than mine was.  Throughout my "dark days" as I call them, I continually turned to this forum for support and advice.  If not for Sandy Craine and Scuba, I don't know what I would have done because even though I reached MMR in 80 days, my oncologist said dose reduction was not an option.  Sandy and Scuba encouraged me to push hard for dose reduction. My oncologist and I finally had a showdown meeting in mid March of 2017 and he reluctantly agreed to a dose reduction to 450 mg/day but PCR testing every 6 weeks instead of every 3 months. I have not had another skin cancer since, but the PAC's and mouth issues continued.  I reached MR 4.5 in May and we reduced dose again in June to 300 mg.  This reduction did almost nothing to reduce my side effects, so when I reached PCRU in September, we reduced again to 150 mg/day.  Since then, I have had no more swollen salivary gland incidents, I continue to have PAC's, but they are far less frequent and no longer debilitating.  I still have mild dry mouth, intermittent mild fatigue, an occasional PAC and occasional sleep problems. I am able to live a reasonable normal life again.  I took Scuba's advice on supplements and I think these have helped.  I do moderate weight machine workouts twice a week and 1.5 miles a day five times a week on the treadmill at about 4 mph.  I have changed my diet to about 90% whole foods.  I still haven't had a cold.

About 5 - 6 weeks ago, I began to have sharp pains in my chest - they were short and sporadic and went away quickly.  I had 4 or 5 of these episodes preceded by dizziness and clamminess, but they always subsided quickly.  Last Sunday, I had wave after wave of more severe sharp chest pains on  the left side accompanied by dizziness and some numbness in my left hand.  I was ready to head to the ER when the pain and numbness began to subside. Just 5 days before this, I had my annual physical and a normal EKG. Go figure.  So, I called my oncologist Monday and tomorrow I go in for a chest X-ray, blood work and another EKG, followed by a cardiology consult next Wednesday.  Tasigna is known to be harder on the cardiovascular system than either Gleevec or Sprycel, so who knows what's wrong if anything. I felt fine yesterday and Tuesday.

There are many stories like mine, different details, but as bad and some worse.  Stick around with us long enough and you will see and hear. I have a wonderful wife who is my best friend and incredibly supportive.  Our relationship was pretty darn good before CML, but has gotten much deeper and even better since.  CML has changed my life, but certainly not all for the bad. I try to stay focused on the good things in my life, but I'll admit I have days when I am stuck hard to my pity pot. I have started volunteering in the chemotherapy section of Mayo Clinic and this helps me realize that even though CML sucks, I've got it a lot better than most of the patients I see there.  My dog and I have also started in the Caring Canine pet therapy program at Mayo and we visit patients there once a week and try to brighten their days.

I still feel like I live my life between parentheses (PCR tests), but at least I am living my life again.  I am still afraid of CML and whatever is next, but I do not want to be defined by CML, even though I have a hard time not being defined by it if you get my drift.

Some additional thoughts for you: 

1. If you have reached MMR, talk to your oncologist about dose reduction; in fact insist on it even if it means more testing

2. Talk to your oncologist about switching to Sprycel - Tasigna and Gleevec are a lot alike so a different TKI like Sprycel might be better for you.

3. Consider counseling to help you better accept your situation and perhaps begin to change your outlook.

4. Consider take Scuba's advice re: Vitamin D and Magnesium at least

5.  Keep sharing with us - no one knows better what you are going through than the wonderful people on this forum.

I wish I lived by you so I could come talk with you. My wife said I need to talk with people who have Leukemia and that it would help me and it does. You are such a very nice woman and thank you for explaining things only the way you do. It always makes me feel better after I read your reply. You should write a book because I would read it . 

Actually, my experience with Tasigna and Gleevec have been very similar to Philip’ as listed in his original post. I appreciate Philip’s input as it resonates with my own experience. It has been my experience that the hem/onc doctors seem to be in denial about side effects. Then the doctors they send you to all think it is side effects the TKIs.