57 replies to this topic

[Daisy1985]

Hey everybody

  I ve been reading around this forum since my husband got sick, a month ago, and I found a lot of usefull information and nice hopefull thoughts.

Now, since I could not find any answer for our worries at the moment, I decided to write my own topic, hoping there was somebody experiencing something similar, any info would help.

So, I m Daisy (26), living in Belgium and my husband (27) was diagnosed with CML, Chronical phase, Philadelphia chromosom + at the end of november. He was feeling tired and very exhausted after sporting (he was playing soccer 2, 3 times a week) and he was coughing so we thought he just had a bronchitis or so but the bloodtests showed otherwise.

He had 246 000 WBC at diagnosis so the doctor put him on Hydrea 1000/day and Allopurinol for 3 weeks. The first week his WBC counts went down to 200 000, then the 2nd week to 180 000 and afterwards to 168 000. So the effect was clearly diminishing. Then, after few days the doctor put him on Gleevec 400, at that moment his WBC was counting arround 170 000 - 180 000.

He s on Gleevec 11 days now and today we ve received some alarming bloodcounts: his WBC went back to 240 000. It feels very frustating that after a whole month of dealing with the side effects we are back where we ve started. He s now feeling very depessed and I m so frustrated that I can t do anything to support him, since I m worried too.

The doctor said that he should continue with Gleevec for a while, and get some new bloodtest in a week.

  I really don t know what to expect, is it normal that he s going in the opposite direction? I noticed that most of the people respond fast and well on G. The doctor said that it may be caused by the fact he stopped with Hydrea, but he s not giving to much info and he s acting very diplomatic.

Since he s feeling very weak, and he s just laying in the bed, I m feeling so scared and I don t know if it s wise to wait for another week.

  Thanx again for this great forum, it s nice to see we re not alone

Daisy

[Taylor]

Hi Daisy,

My blood counts were close to your husband's at diagnosis: mine were about 230,000.  I began hydrea and leukopheresis immediately while in the hospital to lower my counts rapidly since I was having hemorrages on my retina.  Anyway, my oncologist would not start me on Tasigna (another medicine similar to Gleevec) until my counts were below 100,000.  He said it would be harder for the medicine to have any affect until below that number.

In any case I began Tasigna with blood counts around 18,000 while continuing low-dose hydrea.  It will work if you give it time but maybe your husband should be doing something else to knock out his counts so the Gleevec can have an easier time taking affect.

[tiouki]

Hello daisy, welcome on board, this place is very nice to get information and share experience it is a good thing that you have post a message

My opinion on your husband counts : I think it is normal . Actually you have to consider that hydrea acts like a spring that decreases cell production. When you stop it immediately the cell counts increase.

That is why at diagnosis doctors usually wait until WBC decreases below 100 000. Gleevec and other ITK do a great job but they are slower to act that's why hydrea (faster) is used at first to decrease WBC when it's really too high (like your husband, 250k (I had 400k)). Usually when ITKs start the counts increase for the reason I explained (the spring thing). It should increase for few days then start to decrease due to gleevec.

In my case for instance I had went down to 25k with 2500 hydrea for 3 weeks (It's a higher dosage than your husband you should consider that, maybe 1000mg a day is simply not enough as WBC count is very high). I then started sprycel and my counts increased to 55k after 10 days (where you are now), then started to decrease to get back to normal range 5-10k.

So there is absolutely no need to worry your husband counts will get back to normal soon I am sure

About feeling weak there are 2 main things that also make that normal : a very high WBC can be exhausting for the body. And leukemic cells tend to overcome red cell production (as well as hydrea...) which often causes anemia which is very tiring.

You will see how is anemia going within a few weeks but if red cells go below 10 you should consider to talk to your doctor about EPO injections (the cyclist drug ) it really helped my for the first 2 months. After that period everything should get back to normal (it's been 5 months and I am back to soccer as well ).

You are in the worst part of the disease : when you are still shoked by the diagnostic, when you don't know how to deal with all information you get and when you wait for the drugs to act. But trust me (and all others will confirm) it really gets better and better. In my personal case as I don't have any side effects my life is the same than any other young man.

Good luck with that! Let us know about your husband and don't hesitate to ask more question (If you speak French I will translate itso it will be easier,  I'm French )

Pierre

[AliceJane]

my reg doctor sent me to hospital when my WBC came back at 267,000. 2 days in hospital and my onc sent me home with no meds and appointment for one month later. Almost month after that insurace went through and started Gleveec.

My numbers went down and I was good on Gleveec for almost a year.

Over 4 yrs later, have gone through Sprycel and am now on Tasigna. I am doing better than ever

I don't know if this helps any, but to say I survived that high count for a couple of months with no meds. But I did sleep through most of those months.

[Trey]

There is not much else he can do right now but wait and see if the Gleevec starts working better.  If the WBC does not drop in the next couple weeks then a switch to a different drug would be needed (Tasigna or Sprycel). 

I would ask the Oncologist:

1) Did the diagnosis show any high risk factors? 

2) Is the Philadelphia Chromosome one of the normal types (b2a2 or b3a2), or is it a rare version?

[tiouki]

I would add :

-Should I continue or even increase hydrea to decrease white cell count and to help gleevec at first?

I am convinced that this jump is normal and is due to the stop of hydrea + a dosage too low (only 1000mg) while the WBC was relatively high

[Daisy1985]

Thanx averybody for your fast reactions! We feel already much more at peace to hear that it s a normal reaction.

However, I can't help noticing that doctors are all handling this in different ways. For us it was also surprising that he was put on Gleevec so soon and gave up Hydrea.

We just hope that his WBC will not rise any higher in the coming week and I m curious what s the doctor going to decide.

@ Trey - we were not told about any high risk, but then again, we were not told too much so far. His blood pressure was today 14,9, quite at the edge as the doctor said and his spleen is also enlarged. But beside Gleevec, he s not taking any other meds. As for the Ph chromosome type, I will ask next week.

Tiouki,

it s feel great to hear your story, and that you are now back to a normal life ( especially back into soccer). My husband, Tom is really looking forward to go on with his active life, and there are really hard times for him, not being able to do much.

We are flemish and my french is not as good as it should be, so I prefere english, but thanx

I will definetly stick around and keep you up to date!

Best wishes to everybody

Daisy

[Susan61]

Hi Daisy:  Glad you joined us to get some help.  Tom seems to be responding the way most of us do.  I have had CML for 13 years. I am on Gleevec, and I do remember my counts starting to go up, before they steadily went down to normal.  I am anemic since I started my Gleevec treatment, therefore, most of my counts are low.

Like Trey said, give it a few weeks.  The body has to adjust to this medication, and if it does not improve than his Oncologist can switch him to on of the other TKI's like Tasigna.  The fatigue he will feel is also normal.  Please keep us updated and ask questions anytime.

Susan

[Trey]

Hydrea is not a long term CML treatment.  It is a form of oral chemotherapy that kills all sorts of blood cells, both good and bad ones.  Our TKI drugs such as Gleevec are more selective to kill off the leukemic cells and allow the good cells to populate. 

Since his spleen is still very large, the spleen may be releasing WBCs back into the blood, which could account for the rise in WBC.  The spleen is a blood cell sorting organ, and it retains or releases blood cells as it deems necessary.

It would be a good idea to get copies of test reports, and ask the docs to explain them in detail, especially if there are any high risk factors.

[pamsouth]

Alice,

Wondering why you went from Sprycel to Tasigna? 

I have been on Gleevec for 6 1/2 years.  I have been trying to keep up with Sprycel vs Tasigna, in case I ever have to change.

Kind of sound like to me, one really need a special kind of test to decide witch TKI works best with their CML Mutation.

PamSouth

[AliceJane]

Gleevec stopped working about 10 months on it. Then on to Sprycel.

My year on Sprycel,

fluid,fluid,

5-7 out patient drainings of fluid from both lungs, 2 lung colapses from fluid, finally ended it in Oct-Nov in hospital with chest tube draining 16 liters of fluid off my right lung.  This is not normal, matter of fact every Dr. who saw me in hospital said they had heard of fluid but not like that. I went home with about 14 liters on my left lung but, it drained in later part of Dec.2010. Funny thing is before this, I never "felt" my insides, but when that fluid started draining I knew it, could feel something going on. The stopped Sprycel in Oct when my first Onc. finally noticed how bad fluid was, Long story about why he didn't notice after out patient drainings and lung colapes.

My new Onc when she saw my hospital records told me like this, even though they glued the sac to my right lung, the way my fluid built up, it could still happen again. She said none of the Onc in the U of TN practice had ever seen or heard of that kind of fluid build up, Most is gradual, mine was like a flooding rushing river. I was off Sprycel or any meds from Oct of 2010 until Feb of 2011. then on half dose of Tasigna til May 2011, Then in Nov 2011 FISH came back 0%

now PCR?? sorry I am awful with tech names and stuff. .02?? sorry , but vry low. She says I am on way to Complete response, as good as it gets.

I am awful with the names and things, my brain has been so effected, believe it or not I once belonged to MENSA.

Now I am stupid air head, which is why I don't comment much. I don't care what they say, I think my brain was damaged somehow before I was Dx'd. This inablity to think or learn new things is very embarssing for me. I learned to read at 3, now I am unable to learn anything new.

alice

[kreuz]

Hi, What you need is time to wait for the Gleevec response to the cml. you suddenly stop the hydrea and switch to TKI drug will cause the wbc bounce back, 11 days in Gleevec is too short time.

[pamsouth]

Alice Jane why did you change from Sprycel to Tasigna?

PamSouth

[Daisy1985]

Tom just had to vomit 20 min after he took his Gleevec. Probably the dinner was too heavy bcs he s not really having nausea. So far vomiting occured 3 or 4 times since he got sick but now I m wondering if the pill is absorbed by the body or he should be taking another one?

[GerryL]

Hi Daisy,

In the information with the Gleevec they don't recommend taking another tablet. I have vomited up the Gleevec about three times now over 18 months - once it is out of your system you feel fine. My last occurance was only a month ago. 

He could take an anti nausea med about 20 minutes before eating and taking his tablet - he can talk to his doc about this.

Also you don't need a huge meal to take your tablet with - I have mine with a sandwich sometimes, cereal and a banana most times as I take it at breakfast.

[Daisy1985]

Gerry and PamSouth, thanx for the advice. I m trying to give him lighter meals and it s going better already.

I was today looking up the actual causes of CML, bcs for me it s not very clear. So I notice that exposure to BENZENE could be one of them. The thing is I m a painter and I have an atelier at home, and I m using all kind of products, solvents, thinners containing benzene. Since 2 years Tom is also working with me but we re doing only murals togheter, using akrilics, witch normally are not solvent based.

But anyways, for 4 years, since we re togheter he s been exposed to all this painting products so now I m thinking, could this be a trigger?

[Trey]

Daisy,

Benzene is not a verified cause of CML, so you cannot blame yourself for anything.  There is nothing to gain by trying to figure out the cause of CML.  It is a genetic accident, and you did not cause it.

[GerryL]

Hi Daisy,

Trey's right - I can't think of anything that I might have been exposed to.

The only thing I can consider that might have switched it on a bit earlier is I had a a number of years of stress of working full time and caring for my mum till she passed away. I was diagnosed with CML a year and a half after she passed away.

[Daisy1985]

Of course, what s done is done and we cannot do anything about it and I m sure there is also a question of sensitivity in all this.

  But thinking about the future, is it safe to keep a CML patient exposed to (potential) cancerigen substances and does that interfere with the treatment?

[tiouki]

Hello daisy,

To my knowledge there is no evidence that having CML would make you be more sensitive to cancerigen substances (through treatment interaction or anything). I think there is no need to worry here.

I also agree with Trey's remark on how CML is an accident and you should not blame yourself for anything. It really is just a genetic accident, very rare (1-2 person on 100 000), but that happens.

I myself wanted to find a reason for that, maybe I did that or was exposed to this. I think it is human to seek a reason to these kind of things when it happens to you. Actually I think it's just happen, by chance, by accident

Good luck to you and you husband and give us some news about the decreasing WBC which are coming I'm sure

Cheers

Pierre