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Second Week on Dasatinib

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Hi everyone,

Just diagnosed 3 weeks ago and started on Dasatinib 05/14. First week was not bad. Worst was joint pain and a bit of dizziness. Second week is way worse - joint pain, cough, no energy whatsoever - feel like all my energy has been zapped by this drug. I’m starting a new job on the 30th and I don’t know what to do. I am very worried about keeping my energy levels up and feeling healthy enough to make a good impression my first few weeks there. Some days are better than others, but I mostly can’t do much of anything without feeling dizzy and weak and like I need to lay down.

I’m on 100mg. The oncologist and I decided to start on Dasatinib rather than Imatinib because I’m 32 and just wanted to knock this out knowing I would endure worse side effects on the 2nd generation TKI. I also have a mutation in ASXL1 revealed during the cytogenetic testing - my onc didn’t seem worried about it as it was tier 3, but I remain concerned and am going for a second opinion the first week of June.

Can anyone help/provide insight on what I can do to feel better? I am early in my career and this new job means a lot to me.

Thanks in advance.

Olivia

Hi Olivia

I'm really sorry to hear about your recent diagnosis, but I can offer you hope that this is, for the most part, a very treatable disease. This community is marvellous and is a massive source of strength, support and information to those of us who won this unlucky lottery so keep asking questions.

I was on dasatinib 100mg for several years, and luckily didn't have many side effects, but here are some takeaways that I've learnt on this group and by the comments of others that may help you.

1. More and more evidence is showing that 100mg is way too high a dose of dasatinib to start with. They start younger people on it sometimes because they hope that the drug hits hard and fast, and that you might be one of the lucky ones who are able to come off the medication at some stage in your life. But the downside is that this increases its toxicity. There are a lot of studies that claim that lower doses, such as 70mg or 50mg, are more suitable - dasatinib is known as a "threshold drug" because there is a minimum effective dose and less is more. On this site, scuba and others are experts on this and I'm sure they will weigh in with evidence. In the meantime, do a quick scan of some of the forum posts and you will see their comments! They've even linked some articles from medical journals that you can show your doctor.

2. When we first start on these drugs, our excess blood cells die at a rapid rate. I was told when first diagnosed that this could cause gout / joint pain because of excess acidity in the body and I was put on Allopurinol (brand name is sometimes Puricos or similar). It may well be that this could relieve some of the pain.

3. A diagnosis of chronic myeloid leukaemia is hard on the mind and body. This is a serious condition and the mental toll is quite severe in the early days. It is possible that the fatigue and lack of energy are influenced by the mental and physical stress of the diagnosis and you may well see that this improves over time. You don't mention how "sick" you were when diagnosed (many people feel fine and get the diagnosis on a routine blood test) but in my case I was very, very sick. No energy, bad spleen pain, bruises, night sweats, a popped vein in my retina... I almost had the full Monty! I had a month off work to come to terms with it all, and then saw significant improvements, especially when I saw the numbers going down.

4. An important possible side effect in the early days of treatment is that people become myelosuppressed, i.e. all their blood counts (white, red, and platelets) just crash as the body becomes used to the TKI drug. I am sure your doctor is monitoring these blood counts but, if for example your red blood cells are affected, this reduces the ability of the blood to transport oxygen to your cells, which can cause extreme fatigue. This is usually managed by taking a drug break.

For you the timing isn't great due to the new job, but I have no doubt that as things stabilise you will start feeling better quickly. Best of luck and please reach out if you have other questions.

Best wishes

Martin

Hey Martin! Thanks very much for your helpful reply. How long were you on Dasatinib before you showed cytogenetic remission? I too was very “sick” before starting on the meds, and I think my doc was operating from the exact rationale you described when starting me on 100mg. I will make sure to show her the literature on lower doses and am going to see that other leukemia specialist who might have a better sense of the quality of life aspect when forming a medication protocol for me. I can barely move around at 32…and my current doc has only had one other CML patient in my age group.

Looking forward to others experiences; your time and expertise means so much to me.

Olivia

Hi Olivia

I was diagnosed at 36 in 2015 so I understand what your doctor did, as mine did the same! CML is so rare that many docs don't see it often in their lifetime and often only in older people, and I'm not sure that every doctor is equally experienced in treating the condition, so I think it's great that you're going for a second opinion.

To answer your question: cytogenetic remission is, as I understand it, when they test your bone marrow again with a biopsy and then find no leukaemic cells in any of the 20 metaphases. However, many doctors don't do a second bone marrow biopsy as this is invasive and uncomfortable, so they usually say you are in cytogenetic remission when the special BCR-Abl blood test (the one that detects CML) shows a value of less than 1% - 1.5%. This roughly corresponds to "remission" in the bone marrow, although with CML the term "remission" isn't really used. Instead, they say you are in "CCyR" which stands for "complete cytogenetic response" and is a very important outcome. I reached this outcome of less than 1% after around 8 months of taking the dasatinib.

According to the standard guidelines, an optimal response to the drug therapy would be when the BCR-Abl test shows

Less than 10% after 3 months on the drug with all blood counts back to normal
Less than 1% after 6 months (complete cytogenetic response)
Less than 0.1% after 12 months (this is known as MMR or major molecular response, and is the goal that most doctors strive for).

I was a slow responder and reached 1.6% after 6 months, and it took me two years to reach below 0.1%. My last test showed a level of 0.003% and I'm currently not taking any medication at all, although this is likely to change in the coming months.

Hope this helps!

Best wishes

Martin

Wonderful, very helpful Martin. Thank you for sharing. Am glad to hear you responded well to treatment, and it sounds like you've got a healthy, realistic attitude about this.

Olivia

There are 36,525 GPs in the UK.

Each year there are 830 new cases.

A GP would see one new case of CML in 44 years.

36,525/829 = 44 years.

After failing in imatinib, I was put on dasatinib. In the first week of taking it, I was very ill. Then for several weeks, I felt as though I was drunk on alcohol. I visited a GP who was unable to diagnose. It was not vertigo. It all came right after a couple of months, and I have had few side effects since apart from low haemoglobin counts (anaemia).

Hi Martin & others, have you been on bosutinib? Any reviews on that TKI? After I wrote you, I went to my oncologist and she stopped the dasatinib immediately because of the joint pain. It’s a shame because in just one week my WBC went from 26 to 11. Incredible drug! I brought up the literature you had mentioned about reducing the dose, but she wasn’t having it given my being so recently diagnosed.

Just wondering if anyone has experience with this. Am a few days into the drug holiday and it’s wonderful. Back to the TKI soon!

Olivia

Hi Olivia

To answer your question, unfortunately I've got no experience with bosutinib. To my knowledge it isn't even available in my country. Sorry that the joint pain was so severe that you have to change drugs - please let us know how you're getting on!

This condition is rough in the beginning while you're trying to get things stable, so I wish you good luck in finding the right TKI and the right dose. It may well be that bosutinib is the way to go.

Best wishes

Martin

Hi Martin! You are, what we call in my culture, a mensch. I really appreciate your thoughtful and wise responses.

I started on 400mg bosutinib and I will admit, I was immediately unwilling to take it again. The side effects were FAST! Nausea, fatigue - not great. It's so interesting because everyone is different, as many have said, and with that everyone has a different threshold for various side effects. I am much more willing to experience joint pain than I am nausea and fatigue, so I have been off TKIs for a week and am restarting dasatinib tonight.

You are right, the beginning is so hard. It's not just the emotional aspect of the diagnosis, which I can barely wrap my mind around. It's the slow progression of symptoms that have changed my life. I am so much more tired, so much weaker, than ever before. I FEEL sick. And that's a really difficult burden to bear. The encouraging stories of your and other's journeys are what get me through this. It makes me appreciate the things I took for granted before the CML. Physical strength, endurance, a feeling of being well. I miss it terribly, but it's also motivation to keep going so I can one day be in that place again.

Sending gratitude and encouragement to all who read this. Taking it all one day at a time.

Olivia

Olivia,

I remember like it was yesterday when I was diagnosed with advanced CML, borderline blast crisis in May 2010. My wife cried at hearing the news and I sat there with the hematologist and began to ask questions about the biology of the disease. The good news is that there was "precision" treatment which was relatively new to target the cancer. And that began my journey which you are a few weeks started. How you feel now will change.

The good news - catching CML early and getting treatment leads to well over a 95% progression free survival. This is extraordinary. The odds of you "dying" from CML are very very - let me repeat - very low. And once you achieve cytogenetic remission (i.e. FISH = zero), your odds of CML killing you go to near zero. Actually they are zero, but as a scientist, we can't be absolute.

The unfortunate news is that to get there your normal blood system has to recover while your leukemic blood system is destroyed. This takes time - many months. The TKI drugs we take kill off leukemic cells enabling our normal blood to take over. You will start feeling better as this transition takes hold.

But you will make it and you will learn a lot about your health along the way. Stay vigilant and read all you can.

(p.s. I am now in treatment free remission with no CML detected and I have not taken any medication for CML in over 3 years)

Scuba! What a nice reply. I have read many of your posts, I am so in awe of and grateful for your comments. To give back to this community is immensely helpful. This was very heartening to hear and it makes me feel like I can forge ahead in dark times.

CML will not "get you", you caught it in time. Once you achieve cytogenetic remission (FISH = zero; PCR < 1.0%), progression free survival is over 95%. And the 5% who don't make it die from something else while having CML.

To be honest, I believe CML saved my life (or at least extended it). Before diagnosis, I took care of myself on the outside (exercise to stay fit and keep weight off). But on the inside I was vitamin D deficient (i.e. D < 17ng/ml !!), poor diet in terms of "nutrition" no K2, no C, no magnesium, no selenium. I just ate normal food expecting food was enough as most people do. I never took a supplement, avoided the sun. I used sunscreen back then. All of that changed with my diagnosis. I have multiple science degrees so reading the scientific literature is easy for me. I dug deep into data most people never see from the non-scientific publications. It became crystal clear to me I was a CML patient waiting to happen as I learned.

As you are new to CML, have your blood vitamin D level checked and be sure to raise to be in the range 55 - 100 ng/ml). Vitamin D activates our immune system. Low vitamin D (i.e. < 40 ng/ml) is associated with chronic disease, low T-cell activation (which fight virus' and cancer) and a host of other issues. As a side note, there is no documented case I can find - NONE - in which a patient admitted to the hospital with Covid (and/or died from Covid) had a high level of vitamin D in their blood (i.d. > 60 ng/ml) at the same time. Every hospitalized Covid patient who was tested for vitamin D showed deficiency. Does vitamin D prevent Covid - no (maybe) ... but severity of disease is greatly reduced. Vitamin D also activates cellular differentiation especially blood blast cells into functioning daughter cells including leukemic blast cells. It is leukemic blast cell explosion which kills in CML. Until that happens, CML is a chronic disease people live with. Blast cell count in your CBC report is very important to monitor. Mine at diagnosis was over 15%, very close to blast crisis. No wonder, my vitamin D was so low I am surprised I didn't have rickets! After I started treatment (first with imatinib and then dasatinib), my blast cell count fell back below 10% - but once I started vitamin D supplementation, my blast cell count plummeted to zero. It remains zero today. Blast cells divide so fast that they are not around long enough to be counted. Zero does not mean they are not there, just that they come and go. They are the building blocks of our blood system. Without adequate vitamin D, they do not get the signal to divide and they accumulate. Many healthy people carry around a few blast cell percent. But leukemic blast cells are a whole different issue. Leukemic blast cells have difficulty dividing. Interestingly vitamin D helps them divide as well - perhaps slowing CML disease and/or preventing it in the first place.

Supplements are not a cure and may not help in some cases and certainly not by themselves. Our TKI's are life savers. But my approach is to attack CML from every angle I can find with a focus on healthy supplementation so I may not need a TKI (which are toxic) to keep CML below detection. It is about risk reduction to help my body fight disease as naturally as possible. It is your bone marrow which is key.