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Hello everyone 

Can I share my story with you all please.

Diagnosed Nov 2017 aged 53. Had a blood test due to feeling generally under the weather for a few months, blood test on a Friday afternoon, had a call from my gp that same evening asking me to make my way to hospital ASAP as further tests were needed. When I got to hospital in a complete state of panic I was told I had cml. After a week in hospital and a bone marrow biopsy it was confirmed that I had ph+ cml with bcr of 50%.

Started on nilotinib in December which seemed to be working well at reducing my bcr score until it was also reducing my platelet count too low so I stopped nilotinib for three weeks and then tried again but still the same problem, even a dose reduction did not help.

My oncologist then started me on Bosutinib in June 2018, but only 100mg per day. She also wanted to get a back up plan in place just in case I could not tolerate bosutinib, this plan was to refer me to our nearest bone marrow transplant hospital to ‘get me in the system’ in case I needed a transplant.

The bosutinib dose seemed to be ok, gradually bringing my bcr slowly Down to 5% by November 2018 and was kinder to my platelet count which I was very pleased about. But I had to stop the bosutinib for a week in December 2018 because the alt levels in my liver were raised. Back on bosutinib the same problem happened and my bcr score had increased to 10%. Dr has now put me on a course of steroids to take alongside the bosutinib to help my liver and also gradually increase the bosutinib dose, I am currently taking 200mg for the next seven days and back to weekly blood tests and phone appointments.

Had another appointment with the transplant hospital yesterday and was told that a perfect match had not been found for me yet and it would be too risky to go ahead with a transplant if the match is not perfect. He said the best thing would be for me to be able to tolerate the bosutinib without the side effects.

Apparently I respond well to the tki but my body is not good at regenerating the healthy bone marrow.

Because of all this I am currently finding it very difficult to find anything positive to cling on to and would appreciate it if anyone has had similar issues and they could give me any advice or words of comfort.

I have had a quick skim through some of the posts here and one thing that jumped out at me is vitamin D3. As far as I am aware I have not been tested for the level in my blood. Should I start taking the supplement? If so, how much? Or should I speak to my oncologist first?

As everyone says I have now reluctantly become a member of this club.

 

Diane - You have had a rough start, and I'm sorry.  I am sure very knowledgeable people will be chiming in here to help.  I think I can speak for almost all of us that we experienced that same panic following the diagnosis (or just before, an even worse time).  There's lots to learn, and you can find it all here and on the LLS site (US), especially treyscml.blogspot.com.  The good news is you have responded to a TKI; now you just have to find the right one for you.  Unless there is some special information that you may have, it would seem very premature to be looking at SCT.  There are 5 TKIs - I'm wondering why they didn't try you on Sprycel (dasatinib)?  Most people still start on Gleevec (imatinib).  Before proceeding down the SCT road, I would think all 5 TKIs would be tried. 

Very, very many of us live with side effects and adverse events - it's extremely rare to have a great response and zero side effects, and that's because although each TKI is targeted, they're all a little sloppy and affect other kinases that were just minding their own business running your body just fine.  So, we end up treating some side effects in order to stay on the TKI.  Also, many side effects eventually calm down (like low platelets or high liver enzymes)  You sort of have to ride them out.  The goal is to balance an optimal or acceptable response against quality of life.  It can take a lot of patience and time to get there, and sometimes even then things change again.

Ask your onc about imatinib and dasatinib.  Also ask just how far out of whack your platelets and liver results are - you might be able to ride it out.  We see the numbers in boldface on the lab report and panic, not realizing just how much, much worse they'd need to be before we should start worrying.  We didn't go to med school!   

Hi Kat

Thank you for replying. I was told I should start on Nilotinib because I had ph+ and Dasatinib would not be any good for me. Onc said she could try another TKI if I still have side effect problems with Bosutinib but she thinks I would just encounter the same issues. So I am worried I am running out of TKI options.

would really like to know if anyone has any advice re vitamin D3. Would it be a good idea for me to start taking it? 

I hope some of our better experts will come forward here, but I'm pretty sure "ph+" is just medical shorthand for "Philadelphia Chromosome positive," which is pretty diagnostic where CML is concerned.  If that is indeed what was meant, it has nothing to do with which TKI you choose.  Are you sure your onc is a CML specialist?  Sometimes community hematology oncologists have only one or two patients with CML.  It sounds to me like your doctor is not following the NCCN or ELN guidelines for CML treatment.  

Yep. Ph+ just means Philadelphia Chromosome Positive, like you say.

You are much better off being Ph+ CML rather than Ph- CML as Ph+ accounts for something in the late 90%s of cases os is better understood and therefore easier to treat.

David. 

Hi Diane,

Welcome to the CML Support forum!  In regard to the Vitamin D question.  The route I took was asking my GP for a Vitamin D blood level test.  The result of the test can then guide you on how much to supplement.  I've been taking 10,000 iu per day for quite a while now.

Your level can then be checked again periodically to find out how you're responding to the supplements.  After a time the tests can be done less frequently as your level stabilizes.

Oregon kara ai, Kirk

I note that the term "Ph+" is also used by ELN as meaning FISH positive:

https://www.leukemia-net.org/content/leukemias/cml/recommendations/e8078...

So at six months, the requirement is stated as "Ph+ 0% (CCyR)".

A Ph+ at six months of 1-35% is a warning. A Ph+ of greater than 35% is a failure.

It may be that the consultant is using the term Ph+ as a percentage measure.

 

 

 

Had a phone appointment with my onc today and mentioned the likelihood of having low levels of vitamin D, she said that probably everyone in the UK will have low levels, but agreed to test me in my next blood test next week.

I have decided to go ahead and buy some D3 and K2 anyway. Just not sure whether to start taking them before I know my levels or to wait? Does anyone have a view on this, or can recommend which ones? There are so many on the market!!

Also increasing my dose of Bosutinib to 200mg and 300mg on alternate days for the next week alongside the steroids as my bloods and liver are currently good. Just worried about what will happen to these when I stop the steroids.

Diane - Do not take vitamin D3 before you have your level tested - it probably would compromise the test.  Save the sales slip also.  If you have an adequate vitamin D level you will just be taking the money from your pocket and flushing it out your kidneys.  Wait and see.  And let the doctor tell you what and how much to take, if you need to.  By the way, 10 minutes a day of sun on bare, unsunscreened skin is the best way to raise vitamin D levels.

Hi Diane,

The D3 gelcaps I take are 5,000 iu each. I once read of a man who took too many gelcaps and a bezoar formed.  The K2 I take is Jarrow Formulas MK7.  I'm not sure if it's available in the UK.

Like Kat said, I'd wait to start D3 supplements until you have the results of your test.

Thank you both for your thoughts, will now wait for my blood results next week before making any purchases. On reflection I was probably just being a bit impatient about starting the vitamins. Just feel really anxious at the moment with the threat of a sct hanging over me.

 

Hi Di

So sorry to hear you are struggling,I was diagnosed with CML in.Feb 2001 the only thing they could offer me was a clinical trial of this new unlicensed drug called Imatinib.I was out on 800 mg at first now reduced to 400mg,yes I have side effects muscle cramps.stomach upsets,and have to still go for three monthly  reviews.ABL good tests every six months such now show it is almost undetectable,have been in remission since 2006.

Di,there is a light at the end of th e tunnel,yes I have good days and bad days  but here I am seventeen years later still waking up every morning ,can still have a life,I will always remember my Doc saying if there is one thing a Cancer hates it is a positive person,keep smiling Di you can beaver this.

That should have read BEST this !

I had my weekly blood test today and also the result of my last bcr test two weeks ago, it had risen again from 10% to 20% which is not what I wanted to hear but I am trying to keep things in perspective. This last was done the day before I began to gradually increase my Bosutinib dose. I had been on just 100mg per day and as of today I am taking 300mg, so in theory my next bcr test in two weeks should have improved.

But more bad news is that my platelet count has dropped since last week from 135 to 105 (low platelet count was the reason I was put on a low Bosutinib dose in the first place).

Dr told me today that my vitamin D levels are very low so she is getting a prescription done for some supplements which I will hopefully pick up tomorrow.

I am still becoming increasingly worried about my situation. Has anyone ever had the same problems with drug sensitivity at all? Does anyone know whether the vitamin D will help me with my platelet counts, or am I just clutching at straws???

Diane

 

Yes I too have had problem with low platlets. Dx in Jan 2018, I’m on Imatinib. Lowest platlets was at 22, so I’ve had breaks but most of last year it was around 60-80. Lately it has improved a bit so it seems stable around 120-140.

So I think 105 is still ok. I had to paus when it dropped bellow 50, and could resume again when it went over 75.

Lesson also seem to be these things can take a really long time. 

1.  Are you having the FISH test done or the PCR test?  What is the "20%" and "10%" referring to?  

2.  Are you seeing a CML specialist?  Are you even seeing a hematology oncologist?

3.  Is there something on your bone marrow test that would send your onc looking at transplant?

4.  Does she ever explain anything to you?

5.  Why have you never tried imatinib or dasatinib?

Your platelets are not that low.  You would be OK'd for surgery, for instance, with platelets like that.  Some of us never get higher than that.  It's the TKI, not the low vitamin D.  Take the supplemented vitamin D as prescribed, as it helps with everything.  

Hi Diane,

I know this is a difficult time for you. And you are going to get lots of different advice on what to do. Of course your doctors are your main source of healthcare.

I know something about vitamin D and the biology of CML. No surprise your vitamin D level is very low given how your CML is rising instead of falling. Vitamin D (supplements) is not a cure. But when you are very low on vitamin D, your immune system which fights cancer in general, is kept in the gates. Vitamin D 'activates' our immune system. Low vitamin D - and we get sick. You do need to get your vitamin D level up quickly, but prudently. It takes time for vitamin D to accumulate in the body as well as dissipate (half-life is two months).. You need to be taking about 50,000 IU's vitamin D3 per week spread out over 10,000 IU's per day for at least 3 weeks to get a jump start. I would not take more than 10,000 IU"s per day. You need to take these supplements with food that has fat. Vitamin D is fat soluble. Take it by itself and most of it will not be absorbed.

The reason why vitamin D is so important is it will buy you time for your TKI to work. Vitamin D induces CML blast cells to differentiate. This is very important. CML blast cell crisis is what kills in CML. Until blast crisis, CML is chronic and can be managed. Vitamin D is very important to help minimize blast cells and keep CML in the chronic phase (buying you time for treatment). Having a low vitamin D is leaving CML open to run wild.

I wish you could take a single shot of vitamin D and get your level up - but that's not possible (without serious issues). But as soon as you get started increasing your blood level of vitamin D, the sooner you start to unleash the power of your own body to cause leukemic blast cells to differentiate and lessen the chance of blast crisis.

If your doctor prescribes vitamin D2 - challenge him on this. You need vitamin D3 - and you can buy it over the counter. Your goal is to get your vitamin D level over 50 ng/ml. I keep mine at around 70 ng/ml. I have zero blast cells. I was borderline blast crisis until I started a vitamin D protocol.

https://www.medicalnewstoday.com/articles/304797.php

All the best

Hi Kat 

I think I it must be the PCR test, it is called the bcr-abl when I get results back which measures the amount of leukaemia in my blood. It was at 50% on diagnosis.

I am under a haematology oncologist at my local hospital and a consultant in haematology and bone marrow transplants at Southampton hospital.

I asked about trying Imatinib and Dasatinib but my onc said Imatinib is a first generation tki and not as effective as second generation ones, trying Dasatinib is a possibility but she thinks I would probably have the same issues as I have on bosutinib.

Hi Scuba

Thank you very much for all the help and info, really appreciate it.

Hoping to collect the vitamin D prescription today to see what I have been given. My onc said I would just have to take one tablet a week to begin with which I find quite confusing, but will see what the dosage is later. I will also make sure I get some vitamin K to take alongside.

I’ll be back later with an update hopefully.

Just finding everything very overwhelming at the moment.

 

When I was first tested for vitamin D, and found to be very low my doctor did the same. He prescribed a once a week dose of 50,000 IU's of vitamin D2.

I disagreed and instead took 10,000 IU's per day for 5 days at a time of vitamin D3 for three weeks. Vitamin D2 is what most doctors prescribe because D2 is a patented drug. It is not natural the way vitamin D3 is natural. I will never under understand why doctors are so wrapped up with "drugs" when natural forms actually work better - but are not patented!.

It will likely work, just not as well as D3

https://www.nutraingredients.com/Article/2015/04/13/Vitamin-D2-vs-D3-Sam....

https://www.easy-immune-health.com/vitamin-d-50-000-iu.html

https://www.vitamindcouncil.org/prescription-vitamin-d2-why-not/#.XGPfF6...

https://www.drweil.com/vitamins-supplements-herbs/vitamins/vitamin-d-def...

Ask your doctor why vitamin D2 (which is what I believe he will prescribe) instead of D3. If he doesn't know - that's cause for concern.

https://www.easy-immune-health.com/why-is-vitamin-d2-all-that-the-doctor...

Once my vitamin D level was raised (to around 70 ng/ml), I maintain it with doses of 5,000 U's one day followed by 10,000 the next in winter and just 5,000 IU's per day in summer. I no longer wear "sun screen". (probably caused my deficiency in the first place - along with my wet suit when diving).

 

 

 

I have just collected the prescription and I have been given colecalciferol 50000 to take one day a week for six weeks then calcium carbonate and cholecalciferol 400 tablets to take once a day after the six weeks.

i have just ordered some vitamin D3 tablets which should arrive tomorrow, but could only find 40000 iu or 1000 iu so I will have to make the dosage up to 10000 iu. I will start with this for the next three weeks and do you think I should reduce the amount after this time?

Also do you think it will be ok to take these mid morning with a handful of almonds and the vitamin K2 at the same time?

I'm impressed - your doctor prescribed vitamin D3 instead of D2. That's good.

50,000 one day a week - not so good. When I was prescribed 50,000 once per week, I just started at 10,000 IU's per day (two of the 5,000 IU capsules) and did this for several weeks. I suspect the 50,000 one day per week will work for you, but side effects can happen at that high initial dose. Be wary of how you feel.

Good idea to take mid-morning with a handful of almonds and vitamin K2 at the same time. That's what I do or I take it with avocado or when I have eggs. Key is to take it with food that has fat in it. Mid-morning or lunch is good because vitamin D is a "sunshine" vitamin and taking it at night could affect sleep patterns (keep you awake). Research is not conclusive on this, but I always fall back on what our ancestors experienced. Their skin made vitamin D when the sun was on it - so the body is use to vitamin D synthesis (or absorption) during the daylight hours.

At the end of your six week period - test your vitamin D level. There is a fair chance it will not be high enough (due to vitamin K2). Vitamin K2 uses D to transport calcium around. Studies show that when people supplement with K2 (~200 mcg / day), it is very hard to overdose on D. It's as if K2 uses up the excess. But this is good. Let your vitamin D level rise naturally along with K2 so your body adjusts the new you.

I prefer diet for calcium:  https://www.healthline.com/nutrition/15-calcium-rich-foods

But you may have a calcium deficiency or osteoporosis. If you eat any dairy, cheese or crunchy veggies (broccoli), you are getting plenty of calcium. Magnesium, however, is much harder to get enough of through diet and is usually the limiting mineral. I take 400 mg of magnesium per day (as citrate or taurate). I never take calcium. As long as you are taking vitamin K2, your calcium is moving where it needs to go (bones, teeth). It's ironic and sad that many women with osteoporosis who are prescribed calcium end up with heart disease and still weak bones. I wonder why? No K2 to move the calclium to the bones!

Additional info: https://www.pharmacytimes.com/contributor/gunda-siska-pharmd/2017/04/why...

Most people especially 'doctors' forget what vitamin D is doing regarding calcium and the role of K2.

1. Vitamin D helps the body absorb calcium. So left alone vitamin D will increase calcium blood serum levels. This is good and bad by itself. Good - you get calcium coming in. Bad - where does it go? Excess gets deposited in soft tissues or excreted through the kidneys - both harmful. Bad for the heart.

HOWEVER. - this is just one half of the chemistry equation. Vitamin D is vital to getting calcium into the body. It did its job. Now what.

2. Vitamin K2 - in conjuction with vitamin D triggers co-factors which bind to the extra blood calcium and scavenge calcium out of soft tissue and move it to bone for storage. Yes - our bones are where calcium is stored for emergency use making a hard skeleton in the process. Vitamin D is ready and able, but needs K2 to finish the job. In my own case - before I took K2 (and I eat Japanese Natto which is loaded with K2), my arteries were getting hard. In just one year, I reduced my atherosclerosis by over 70% !! Five years later my arteries are normal - like a 30 year old.  Very cool. K2 is amazing stuff.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566462/

D and K2 are a dynamic duo working together with the parathyroid gland to keep calcium at the correct levels and preventing soft tissue deposition. Calcium regulation by the body is absolutely essential to survival. Too little we die, too much we die. It is tightly controlled (along with Mg, Na, K).

Most people know about D and calcium (one half of the equation) - and so create more problems that way and cause excess calcium to occur. K2 is the key in this case to keep it in the zone.

A nice summary here:

https://wholehealthchicago.com/2013/07/22/mayo-clinics-stunning-vitamin-...

 

 

Thanks Scuba. I am starting with the daily D3 and K today as you recommended and will ask for my levels to be checked in six weeks. Just hoping and keeping my fingers crossed for a positive outcome, will update here in a few weeks.

Just verifying it is vitamin K2 you are taking -  .. correct?

K2 is also known as menanquinone or MK-7. Make sure it is K2. (vitamin K can refer to K1 which works differently)

Hi Scuba

yes sorry should have made that clear, definitely K2 that I am taking.