58 replies to this topic

[reedgirl]

It's been a while since I have posted on here. I haven't needed to because my husband has been responding so well to his 70 mg Sprycel. Other than side effects most are dealing with he's doing great!

So, why do I post today???? I am currently in the exact hospital my husband was in a July 2010 being diagnosed. The doctors are very certain I have ALL. What exactly are the chances a husband and wife end up with two types of leukemia?? And I have no idea what to do for treatment. And how do I reassure my 21 year old I'm going to be ok like dad and she's safe and won't get it??

I'm numb and in shock. I'm scared. I'm worried about my family.

[alexamay09]

I am so sorry to hear your news.  I had cancer in 2009, my husband in 2011 and me again in 2012.  Not what you'd choose.  All the very best of luck. I am sure there is a lot of expert knowledge on the forum.

 

Alex x

[Trey]

Very unusual.  Although the risk to your children is very small, it will be hard to convince them of that.  Blood DNA changes significantly when it is passed down.  Other tissues may be more prone to pass down inherent cancer risks, which is why some other types of cancers run in families. 

 

Treatment fpr ALL varies based on sub-type.  You will need to find out the exact diagnosis regarding subtype and let us know.

 

Hope all goes well.

[hannibellemo]

Oh, wow, I'm so sorry to hear this! Don't forget there is an Acute Lymphocytic Leukemia discussion board here, too, and you will have lots of support and good information from them for your particular leukemia.

 

Good luck, I wish you the very best in your treatment!

[scuba]

Very unusual.  Although the risk to your children is very small, it will be hard to convince them of that.  Blood DNA changes significantly when it is passed down.  Other tissues may be more prone to pass down inherent cancer risks, which is why some other types of cancers run in families. 

 

Treatment fpr ALL varies based on sub-type.  You will need to find out the exact diagnosis regarding subtype and let us know.

 

Hope all goes well.

 

Perhaps exposure to radiation or some external stimulus that both of them experienced? One leads to CML another to ALL.

Purge conjecture - just thinking that some environmental condition that they may have been in (or continue to be in) that is giving rise to this. We know radiation from sources such as X-rays (common with medical devices like cat scans and x-ray machines) can induce Leukemia when the devices are not calibrated properly.

[reedgirl]

So far they are unable to determine what I have. They're saying I have 8 or 9% blasts in my blood but couldn't get the same result in fish or cryogenic tests or something.
They did a BMB yesterday. I wanted to be sedated but there was a problem with anesthesia or something so I had to get it in my room with Ativan and numbing injections. Yep that hurt.
So as of today no one knows what I have, hoping to start some kind of treatment early next week because it's the weekend and who is reading my bmb??
As far as my hubby and I, we absolutely can not think of any material we've been exposed to that would cause this. We are stumped. I am so worried about him and his health. I can see he didn't get any sleep the first night.
My fear is getting a correct diagnosis and getting started on treatment ASAP.
Thank you all for your words and support! We are numb

[Trey]

There is no point in trying to determine a cause.  Most times there is none except random genetics.  Neither you nor your husband did anything wrong.

 

Do not be in a rush to start treatment without a proper diagnosis.  Starting with the wrong treatment is far worse than delay.  At this point the Onc does not know it is ALL, so it could still be something else (other possibilities include Myelodysplastic Syndrome, AML, or maybe even some illness causing blast release into the blood, although rare).

 

Get copies of all test reports.  You should have had a Flow Cytometry test done, so ask the Onc to interpret that for you.  That should help determine what type of blast cells are involved, either T-cells or B-cells. 

 

You want to know answers to the following questions:

1) What cells are primarily involved, T-cells or B-cells?  (Assuming it is ALL)

2) What tests have been done so far?

3) What does the Flow Cytometry report say?

4) What types of FISH were done, and what did the reports conclude?

5) What does the BMB show?

 

The test reports are the key.  You do not have a diagnosis until you have facts.

 

http://lymphoma.abou...Blast-Cells.htm

[reedgirl]

Trey,

  Once again thank you so much for your valuable insight and information.  This all started with me having fevers, bruising and pains. My doctor admitted me to run tests.  I was told in my local hospital by a hematologist that I had high blasts, my platelets were 49 and my hemoglobin was 8 something.  They transferred me to Pittsburgh where my husband was.  So far they ran blood fish, not sure what exactly, and a BCR test.  I had a bone marrow biopsy done on Friday.  They just came in to tell me that so far none of the testing I had here has shown blasts in my blood.  He feels fairly certain I have leukemia, if he had to guess it would be ALL.  At this point I have nothing until the BMB results come back Monday or Tuesday. He did say that one of the blood tests did not show the Philadelphia Chromosome, so I'm assuming that is good.

I have your questions written down, so hopefully Monday I'll get answers.

Thank you Thank you Thank you!!!!

[Trey]

These symptoms could be ALL or MDS, and your doc is just guessing at this point.  The blood blast disappearance also brings up other less complex diagnoses.  But you may want to learn more about MDS in case the doc discusses it so you can understand what the doc is saying.  You can also ask why the doc does not think it is MDS (sub-type RAEB).  Of course, I don't know either way.

 

http://www.cancer.go...c-treatment-pdq

http://www.mds-found...rg/what-is-mds/

[reedgirl]

Trey, I sent you a message, not sure if you received it but here's the latest...
I was hoping to receive a diagnosis yesterday but bmb testing so far has been inconclusive. They say they are following the standard testing procedures, and should know for sure in 24-48 hrs. Is this normal?
I'm trying to decide whether to stay here or go to U of M as I am in contact with Dr Talpaz but without any results it's tough.

[Trey]

BMB results come in two stages, so it is normal.  There is an initial quick look within a couple days which provides some amount of information, and then the full report will have more sub-test results.  So there could still be more information coming.  But if there are no chromosome mutations, that would be a good thing.

 

I would wait for a full scope of test results before deciding to see Dr Talpaz.  Make sure they have also done a Flow Cytometry test.

[reedgirl]

I got a copy of the flow Cytometry test today.  It's greek to me lol.  As of now they are saying it looks like AML, pathology is signing off on the report today.  The fellow said my marrow contained 100% blast cells.  I asked about sub types of AML, he said it didn't matter the treatment would be the same.  Chemo scares me.  They want to start it tomorrow.

[Trey]

Did you really mean 100% blasts?  Ask to see the report that has the blast count on it.  You said a recent peripheral blood test showed zero blasts although a previous report showed some.  I do not believe it is possible to have zero blasts in the blood and 100% in the marrow.  Something does not match.

 

Personally, I would want a completed diagnosis before anyone put a chemo drug into me.  They don't even have your BMB report back yet.  There are risks both ways, but that is just how I look at it.  Do they really think a delay of a few days would be that significant?  Maybe a second opinion from Dr Talpaz before they start anything would be wise -- that is what I would do once I had the BMB report.

 

Overall the blast count is the only issue that has been found.  If your marrow blast count is actually that high then that is a problem.  But I would have them re-test (yes, another BMA; the hole is still not healed over so it would be easy to do).  One issue is that if the sample is only taken at the edge of the bone, the blast count will be skewed to the high side because that is where blasts generally reside.  They need to get a deep BMA sample.

 

The docs want to start you on the transplant road tomorrow.  It may become necessary, but being in such a hurry without an actual diagnosis would cause me personally to slow them down a bit.  I would certainly get another expert opinion first.  You may also want to read this:

http://community.lls...=+bmt +patients

Edited by Trey, 01 July 2015 - 06:19 PM.

[LottieR]

Hey again Reedgirl,

Just saw you have this post too and have some info from you BMB report. It is not uncommon for people to have very high blasts in their BMB. Nate's blast count was at around 92%, I think. I'm not sure I've heard of anyone having it as high as 100%, but I imagine it's possible.

That said, I just want to reiterate what Tex said on another post- acute leukemias are a very different animal than chronic. There literally is not time to look around and decide. In fact, sometimes 24 hours can be the difference between life and death. If your doctors want to start chemo soon, it's probably necessary. After the induction chemo is finished you can look into different treatment centers and go from there.

My husband found that the induction chemo actually made him feel better. He'd been unwell for several weeks. In fact, the night before he started chemo he spiked a fever so high (105.8) he could have died had he been home. They had to pack him with ice and kept a cooling machine next to his bed for the next week just in case. After a day or two of chemo he felt "normal" again. He never really dealt with a great deal of nausea until his transplant.

As for the sub-types- he's right about it not mattering at this point. Induction chemos would be the same regardless. It will make a difference for consolidation and maintenance, and whether you will go to transplant, but as far as at the moment, it doesn't make a difference. Their goal now will be to keep you alive and kill as much of the cancer as they can.

 

-Lottie

[reedgirl]

Dr came back in this evening. I have 100% of immature cells in my marrow and a lot of them were blasts. He states that the induction treatment doesn't change regarding any mutations. Once it's AML the treatment begins the same. I need reassurance from Dr Talpaz about that. They are sending slides out tomorrow to test mutations. He made it sound like they would put off starting treatment one more day for us to hear from Talpaz. But the longer I wait the higher risk I become. Why can't this be easier

[reedgirl]

One more thing, I will have a basic biopsy report in the morning. It will also be faxed to U of M.

[Trey]

You know you can trust Dr Talpaz, so that is a good plan. We hope all goes well.

 

Regarding the "100% blasts", per your last posting the docs have now changed that to "100% immature cells", which makes more sense.  Not all immature blood cells are categorized as "blasts" and should not be grouped together for the purpose of telling the patient their blast count.  So that information from the docs was not accurate.

 

As for anyone saying 24 hrs is a life and death matter in every case, and there is no time allowed for decision, I think we all know what that is.

Edited by Trey, 02 July 2015 - 03:14 PM.

[kat73]

We are all pulling for you, Reedgirl.

[AnnieH]

I hope you get your answers and you have a treatment plan in place. The induction chemo for AML has been the same since the 1970's, I believe it it was called 7+3. I had to get a second induction because my blast count was high and after the chemo I still had 30% blasts. I was able to get into remission after a second much stronger chemo regime called CLAG-M. Caught earlier, the standard induction most likely would have worked.

[roamingdoc83]

Sadly 'amazing'... while CML is rare, my wife's good friend was diagnosed in '08, around sept. I was diagnosed in '09, Oct... and another friend a few years later... we all know each other.

A good and dear friend had five siblings all die from cancer... and she passed as well. There is often no 'rhyme or reason' to the terrific difficulties in life. Hang in there and battle on... really we have little choice but to stay the race. God Bless.