22 replies to this topic

[SBDFjersey]

My husband was diagnosed on July 18th with CML he was sent to the ER from a routine blood test with a WBC of 300,000. He started Hydrea until we received Tasigna on 8/2.  He was having some vision problems and went to Optometrist on 8/6 who advised him to go to Wills Hospital in Philadelphia.  He has hemoraging in the blood vessels behind his eye, they immediately admitted him back into the hospital 8/7 and did four rounds of Leukapheresis, which brought his WBC down to 43,000.  His vision is getting better but not totally back to normal.  The Oncologist says he doesnt' know what the number has to come down to for it to be back to normal and he has never seen this in a patient with Chronic Leukemia only patients with Acute.  Just wondering if this has happened to anyone with this diagnosis and if so did you ever regain your full vision back that you had prior to diagnosis? 

Appreciate any response as well as guidance you can provide, obviously this is all new to us so we are trying to understand it all.

Danielle

[CallMeLucky]

Sorry about the diagnosis.  Did they tell you what phase your husband is in?  There are three phases, Chronic, Advanced, and Blast Crisis.  Phase at Dx tells a lot about prognosis.  His counts were high, but others have been that high and are doing well.  In most cases CML is very treatable and overwhelmingly people do well on treatment.

[SBDFjersey]

Hey Lucky,

He is in the chronic phase, they did see some blasts in his blood but said to have a few is normal, I was looking at the boards and I don't understand all of the lingo, what is pcr? And I was just reading the one thread they just did the hand thingy for the spleen as well should they be doing an ultrasound?  Also my husbnad Uric Acid levels are high is that common as well?  Thanks for your help !

[TeddyB]

My Uric Acid was high when starting treatment, i was given Allopurinol to help with it so i wouldnt develop gout. Allopurinol was to help the body get rid of all the dead leukemic cells. My wbc was 270,000, and i know a lot of people have had much higher, i didnt have any problems with my sight though. They only did the "hand thingy" with my spleen, but mine was huge, so it was easy to feel, didnt have an ultrasound. Chronic phase is good, he will likely respond well to one of the current tki`s

[CallMeLucky]

Chronic phase is very good.  It is highly likely that once the drugs start working he will start to feel well again.  It may take some time, even a few months before his body recovers.  Mixed in with that will be how well he handles the drugs in terms of side effects.  Most people do well.  We all tend to get some side effects but they are mostly annoying and not show stoppers.  Everyone is a bit different so you will just have to see how it goes.

PCR is the test they use to track how well people are doing when taking TKI drugs.

Aside from that one Dr telling another patient on this board they needed an ultrasound, I have never heard of anyone getting an ultrasound for spleen when diagnosed with CML.  I didn't have one.

I think it is normal for the uric acid levels to be high.  Like I said his body is beat up right now dealing with the leukemia but once the drugs kill off the leukemia cells things will get better.  Can't predict on the vision, but I would not be surprised if it cleared up over time.

There can be a lot to learn about CML.  Some of us want to know all the details others just want the Dr to tell them if they doing ok and then go about their life.  How much information you decide you want is up to you.  If you want to dig into it, there is a great book called "The Philadelphia Chromosome" that pretty much explains it all.  It's a pretty easy read and you will learn and appreciate what a miracle TKI drugs are and why the prognosis for people with CML is so good.

You can also find a ton of information here http://treyscml.blogspot.com/

[jbinsd]

SBDFjersey,

Really sorry about your husband's diagnosis. The first month in particular is a crazy, scary whirlwind.

The high levels of uric acid are often high at the beginning.  It was the same for me too.  After a little while on the medication it should come down.  TeddyB's explanation of how Allopurinol matches up with the way it was explained to me as well.

I wish I could speak to the issues related with your husband's sight, but his body has a LOT of things going on right now between the Hydrea, Tasigna, stress, etc.  Don't be afraid to call your doctor if something doesn't seem right. 

I agree with the "hand thingy" spleen check. Unless your doctor makes a really good case for it, an ultrasound *should* be unnecessary.  Each time you go in, the doctor will check to see if its size is getting smaller.  If your husband is experiencing discomfort from the enlarged spleen, he'll probably soon find that discomfort decreasing.

Try not to worry about the lingo, you all will pick it up overtime.  Unfortunately there are many doctor's visits in the next few months - it'll all start to come together.  I actually took a list of terms to my doctor's office that I had seen in test results and went through each one with him to try to understand it.  I only partially understood, but now after 4 months, I've got it.  You two will too, I'm sure.  Here is the quick shorthand for some common ones that you'll see:  PCR is a blood test that looks at the amount of leukemia swimming around in his blood; FISH looks for the amount leukemia in his bone marrow; WBC is white blood cells.

Hope that helps.

jbinsd

[SBDFjersey]

Teddy and Lucky,

Thank you both for responding, and asnwering my questions. My husband is just down right now especially since his vision impaired, I am going to get that book and read up some more.  Their is so much to take in so I appreciate your help.  We go for a second opinion on Thursday so I am trying to think of more questions to ask, anything you can think of I would appreciate I wasn't aware of the PCR test until someone else told me.

[SBDFjersey]

Ok so they did the bone marrow biopsy do they do the PCR test later after he has been on the medicine for awhile the oncologist told us in 6 months he will have another bone marrow biopsy.  He has been complaining his side is bothering him , I keep telling him it is going to better it is just going to take time which I am sure is easier said than done when you aren't the one not feeling well.

[IGotCML]

FYI, I had an ultrasound on my spleen when I had my initial bone marrow biopsy during my diagnosis.  I didn't question why it was being done as I thought it was a standard procedure.

[IGotCML]

I had an enlarged spleen when I started on Tasigna in January.  It took 3-4 weeks for my spleen to get back to normal size, as a reference.  My WBC count was 50k when I started on Tasigna.

[Trey]

It is the medication which causes the eye hemorrhaging.  They are caused by small vessels which burst, sometimes in the cornea and sometimes elsewhere as your husband experienced.  That may recur occasionally.  He should regain full eyesight quality as the eye slowly gets rid of the coagulated blood and generally repairs the small vessels.  It may take several more months.   

[Susan61]

Hi Danielle:  So glad you joined us.  We have a geat group here, and everyone has gone through one thing or another since diagnosis.  Just ask anything you want at anytime.  Try not to worry about every little thing like PCR and the thing about the spleen.  That was me who started that conversation, because I was surprised when my doctor wanted me to get a Ultrasound of my Spleen 14 years after diagnosis.  I saw no reason for it and as you can see nobody else could understand either.  I have always just had the doctor feel the spleen area with my exams.

     Your husband sounds like he has been getting the proper care and testing, and just take one day at a time.

     You will learn things as you go along. Try not to overwhelm yourself trying to learn everything in a day.  The most important thing is to remember that CML is one of the most treatable forms of Leukemia.  ITs nothing like it was years ago.  Welcome to Our Group

Susan

[SBDFjersey]

Thank you for all of your information it has been very helpful.  We appreciate it.

[SBDFjersey]

Sorry it is me again, another question that maybe some of  can help with, we have 3 yer old twin daughters, currently when he was in the hospital I just said that daddy has a boo boo and will be home from the doctor soon.  But since he has been home and so tired they really seem a bit apprehensive about sitting with him and playing.  Can you share how you may have delt with small children when you were first diagnosed and not feeling well?

Thanks

Danielle

[jbinsd]

Hi Danielle,

I can tell you how we handled it.  I have a 2 1/2 year old (with another on the way in November).  The combination of the pain/issues related to my spleen, side effects of the Hydrea, and mental toll made it really hard to engage with my daughter like normal.  

In the first month after the diagnosis, we had a lot of folks come to help - my mother-in-law, my mom, and a friend of mine.  It helped provide a degree of distraction and also took some pressure off of my wife as well.  If that is an option for you all, I would recommend it.

Of course, she noticed that I couldn't do quite the same amount of playing as I normally did - understandably I was hyper-vigilant about protecting my spleen. I also wasn't as helpful during the bedtime routine.  So we would tell our daughter that I couldn't play or do things in the same way because I had an ow-ee inside - one that we couldn't see - so I needed to rest or be careful.  That seemed to do the trick most of the time.  But they'll be able to sense that something is wrong. We had some pretty spectacular tantrums as I was trying to sleep - I'm certain that most of them were related to her feeling that something was wrong.

So not a great answer, but if you can get help with the kids or with day to day tasks, I think you'll find it will make a big difference in the first month until the medication starts really making an impact and relieving him of his symptoms.  And please make sure you take some time to yourself - as the primary caregiver, it's going to fall on you quite a bit (if having twins isn't enough of a challenge for two parents).

Hang in there, things are overwhelmingly more likely to improve soon.  For what it's worth, I just cranked out a sprint triathlon a few weeks ago - 3 months after my diagnosis.

[CallMeLucky]

No simple way to deal with it, but kids will follow your lead.  If he broke his leg, had his appendix out, had a car accident, etc, there would be disruption to life and the way things were.  In this case you have the added pressure of the big bad "C" word.  So it may feel more overwhelming because with other types of illnesses and accidents you would see a time horizon.  Right now you don't see a time horizon, and if you do you may be thinking some scary things down the road.  That is to be expected and completely normal.  I remember the first thing I thought when I found out about my illness was that I wasn't going to be around for my boys (they were 6 and 4 at the time - now 9 and 7).  So a big part of this is more about how you and your husband feel and handle it.  Your kids will follow your lead.  "daddy is sick/hurt and he will be better soon, but for now we have to take it easy on him until he is feeling well enough."  That is not a lie, the odds are overwhelmingly in your favor that he will be alright.  In the long run he may have a bit less energy, maybe some aches and pains but overall he will be able to do pretty much everything he did before and life will get back to some semblance of normalcy but it will take time. 

I think if you approach this as something that is temporary you will do much better and your children will benefit from that and respond accordingly.  If this becomes the big dark cloud that looms over the family as we wait for the inevitable, then the kids are going to have a harder time with that.  Since the odds are that your husband will live his normal life span and die from something other than CML, the sooner everyone gets into that frame of mind the easier the adjustment will be.  Don't get me wrong, CML is a serious illness, but for the most part it is a chronic one and most people will do well with the drugs and move on.  So unless there comes a time when it is not appropriate to think that, you should live life as if that is the case.

Living with CML has been a challenge, but I do all the things with my kids that I would have done before.  We take vacations, we went to Disney, we do baseball, scouts (I am den leader for both of my kid's dens), I work full time, mow the lawn, etc, etc, etc.  You hit a big bump in the road, but things should get back to the way they were in time, so my advice is to approach it with that mindset.

Best of luck

[Mayra]

Danielle,

When I was first diagnosed I had a 2 year old and 7 year old.  It was Christmas  time. I tried my best to make life normal for them.  We went to the Nutcracker, marched in a parade (I am a little nuts). Did not want them to think there was anything wrong.  I would cry only when they weren't around.   Luckily they were both in school because I work full time. I took one week off of work and it helped that they were busy.   The weekends were a bit tougher. They know that mommies blood is sick.  That I have a blood disorder.  I have never used the "C" word in front of them.  I think that's to scary for them to deal with.  Maybe in a few years.   For now I can't really cope with that word either. It's been 8 months and I too lead a "normal" active life.  I decided to work part time to allow myself more time for me!  I go to the gym, volunteer at my girls school, and am a lecturer at church.  It will get better.   Hope everything starts to become as normal as possible soon.

Mayra

[SBDFjersey]

Thank you for sharing your experience,  I am thankful that my mom has been a great help with our girls, although some days they wear her out, they are  bit of a handful, but they will be starting preschool in a few weeks . I know it is going to get better I just have to convince him of that Good news this morning his numbers are down to 15000 so he is responding to the tasigna. 

Take care, wishing you all the best and enjoy the rest of the summer

Danielle

[Lizzybee]

I had lots of little aneurysms and hemorrhages in my eyes when diagnosed. My wbc was 317k and apparently my blood vessels were very clogged and my blood flow was sluggish.  I had a visual fields test that showed some minor loss of peripheral vision in my left eye.  Based on my eye exams since my diagnosis, my vision is still pretty good and the abnormalities have cleared up, but I feel like my vision worse since having CML.  I have a lot of blurriness and eye strain even when wearing my glasses, and especially when tired.  That being said, I can still read, work on the computer, etc,  The constant blurriness is more of an annoyance than a hindrance.

[Tedsey]

Danielle,

I was nursing a baby and a 3 year old when I was first diagnosed.  It was hardest for my 3 year old to understand why mommy was all of a sudden gone for a week (we had never been apart) and then he couldn't nurse any more.  So, I wrote him a story.  Although I was vague, I think he was too young to understand (he turned 3 a week before I was dx).  As a result, I think it effected his toilet training (he would hold his poo--and was not fully toilet trained until 6).  He also has had some major issues with anxiety tied to his bowel movements and me dying (a guess, but probably true).  Although we never said anything about dying, everyone else around us did.  Kids will pick up on the "thickness of the air" depending how family and friends deal with it. They will know who the 300 pound gorilla is in the room.  I am not saying this will happen to you, but it could.  I think we should have just said that mommy's blood is sick, but we expect it to get better (plain and simple).  That is the truth.  After 3.5 years, the disease is undetectable in my blood and I had a high WBC and enlarged spleen.  My life now is really no different than it was, but I do feel I was cheated out of really enjoying my kids' younger years.  I think this had a lot to do with the kind of person I am (anxious) and a very unkind oncologist I had initially.  She led us to believe that I would be dead if she didn't save me with a stem cell transplant.  Every check up was always bad, and she had me in the office so much, shouting fire with every dip or rise in my bloods, that I hardly saw my baby and toddler.  Make sure your husband feels comfortable with his oncologist.  It is important that he or she be knowledgeable or has the potential to be knowledgeable enough about the disease (this will be hard for you to know since you are new to CML, but ask here).  The oncologist also needs to have a positive attitude about your husband's survival.  It took me a long time to get to a point where I didn't feel it was a sham and lying to my kids (and myself) that I would ever grow old.  I now expect to.  And the longer we live, the more advances there will be in drugs and maybe there will be a cure in our lifetime.  The drugs should keep your husband alive to see his kids grow up.  I advise to take the high road and act like he is going to live at least an average lifespan.  Why not?  It is better than dwelling on the worst case scenario, which may never happen (been there, done that, it sucks).  Things don't go well, you will deal then.  Of course, I would suggest getting to know this disease and treatments well, but try not to go to the place where you live with the constant thought that his life will be cut short.  He may, like I presume most of us, outlive CML. 

As I remember the devastating blow we had 3.5 years ago and how unfair it is to have your young family disrupted by CML, I wish you peace.  I had a very rough ride with the disease.  Both my oncologists (the first being the worst) had me in a high-risk category.  They never expected that I would get to 0 CML cells detected in my blood without a transplant (but my 2nd oncologist always holds out for me--she is awesome).  I don't know what the future holds and I let it scare me sometimes, but I expect the best.  I know this is extremely hard, esp. when you have young children and love your life and family.  As it did for us, I believe things will eventually settle down for you both.  Take care of your mental health!  That is extremely important for both of you. Many cancer centers offer free counseling services.  I know the one I go to does. (This is just a suggestion, I don't want to tell you what to do)

I know you will find your way with the twins.  I found the best way to explain it was that my blood was sick, but it is getting better.  That is the truth.  Right now, my son still has hang ups, but I think now it is more the way he is wired than fearing all the time that I will die.  We still have some issues with him not wanting to be away from me, but it is also hard for me to let go.  I think this is more an issue of me having a hard time letting my babies grow up.  But I am doing the best I can to push them forward in a healthy manner.

Hugs, peace, & best wishes,

Tedsey