31 replies to this topic

[Kresendis]

I'm going to share our story in hopes that someone has advice or info or anything to help us! My husband went to the ER on 12/29 with severe abdominal pain. They told him his spleen and liver are enlarged. After running a blood test, his WBC were at 117,000. First they said they thought it was ALL, however now they're saying it's CML ph+ in blast crisis. He has been given 2 doses of Vincristine along with steroids and Sprycel. His wbc is now normal and platelets are a little low. He will be getting 2 more doses of vincristine before leaving the hospital. I'm very nervous and would really love to hear stories of others in this same situation or somewhat similar. They're talking about sct, but we aren't sure. After his last dose of vincristine they'll be doing another bmb to determine the counts. They've also mentioned that blasts are no longer in the blood. Please, let me know anything you can tell me! Thank you!

[dede5]

There are others on here who can give you more medical information, but sounds like you're in a panic, so I'm offering my input. I was diagnosed borderline accelerated/blast crisis (with blasts in blood). What you've described sounds a lot like my situation at first. The fact that the blasts are no longer being seen sounds like a good sign to me. Every cancer patient's journey is unique, but I can say I've seen 5 birthdays since then. Take it a step at a time and learn all you can. I would like to hear more as you move along. Both of you take care.

[Kresendis]

Thank you for the info! I'm new here, so hopefully I'm responding how I should be. What was your treatment? Did you get a sct?

There are others on here who can give you more medical information, but sounds like you're in a panic, so I'm offering my input. I was diagnosed borderline accelerated/blast crisis (with blasts in blood). What you've described sounds a lot like my situation at first. The fact that the blasts are no longer being seen sounds like a good sign to me. Every cancer patient's journey is unique, but I can say I've seen 5 birthdays since then. Take it a step at a time and learn all you can. I would like to hear more as you move along. Both of you take care.

[r06ue1]

There's another post on here concerning a Father in Blast Crises, you might read through that to get more information.  Most of us on here are CML Chronic phase so we don't have first hand knowledge of Accelerated or Blast phases.  My Oncologist once told me that if I were Accelerated or Blast, I would be getting a bone marrow transplant.

[hannibellemo]

Welcome, Kresendis! 

 

Did you ask your doctor why he thought your husband was in blast crisis?

 

My WBC was 3 times higher than his and I was in chronic phase so please don't let his WBC throw you into a tailspin.

 

Where is your husband being treated. Is it a community hospital in a small town, cancer center in a large metropolitan area, university hospital, transplant center? That can make a huge difference. Don't be rushed into anything. For most of us a bone marrow transplant will never enter the picture and it is an absolute last resort.

 

Here is a website with some good questions for you to ask your doctor. You and your husband should do everything you can to learn as much as you can about CML. 

 

My first question would be why the rush?

 

http://www.cancer.ne...ions-ask-doctor

 

Calm down and ask his doctor the questions. You have time. Good luck!

[Kresendis]

Thank you for the info. The reason he's in blast crisis is because there were 90% blasts in his blood, they're now gone because of the medicine.

I did read the other post, Thank you. I really wish I could find more people in my situation to talk with regarding blast crisis.

Bone marrow transplant sounds scary, but I guess it's the best choice for this case, according to the doctors.

He is currently at a hospital in Lansing MI. We are trying to get moved to the university of Michigan once insurance is figured out. University has a cancer center and they do transplants.

Welcome, Kresendis!

Did you ask your doctor why he thought your husband was in blast crisis?

My WBC was 3 times higher than his and I was in chronic phase so please don't let his WBC throw you into a tailspin.

Where is your husband being treated. Is it a community hospital in a small town, cancer center in a large metropolitan area, university hospital, transplant center? That can make a huge difference. Don't be rushed into anything. For most of us a bone marrow transplant will never enter the picture and it is an absolute last resort.

Here is a website with some good questions for you to ask your doctor. You and your husband should do everything you can to learn as much as you can about CML.

My first question would be why the rush?

http://www.cancer.ne...ions-ask-doctor

Calm down and ask his doctor the questions. You have time. Good luck!

[Kresendis]

Thank you!

There's another post on here concerning a Father in Blast Crises, you might read through that to get more information. Most of us on here are CML Chronic phase so we don't have first hand knowledge of Accelerated or Blast phases. My Oncologist once told me that if I were Accelerated or Blast, I would be getting a bone marrow transplant.

[dede5]

Thank you for the info! I'm new here, so hopefully I'm responding how I should be. What was your treatment? Did you get a sct?
 

Your response it absolutely normal. I can't imagine getting that kind of information and not being in a panic. No sct, I've been on TKI Sprycel the entire time. Doing just fine, for the most part. They nearly scared me to death listing all the possibilities at first. As time has gone by, I've calmed down a lot. 

[Trey]

If it is accurate he had 90% blasts in peripheral blood at diagnosis, that is certainly a Blast Phase, but may be either CML or Philadelphia Chromosome positive Acute Lymphoblastic Leukemia (Ph+ ALL), which can be tricky to diagnose as separate from CML, so a second opinion would be a very good idea.  If it were me, I would contact Dr Talpaz at the Univ. of Michigan and ask Dr Talpaz if he would review the diagnosis.  Here is Dr Talpaz's info:

http://www.uofmhealt...moshe-talpaz-md

 

Don't be fooled by your husband's current normalized status, which was induced by chemotherapy (Vincristine).  That will not last long.  The initial Vincristine chemotherapy will not do anything for him except temporarily knock back the leukemia, which is where your husband is now.  After this, maybe the Sprycel will work to keep the leukemia in check.  That could happen for a while, maybe for months, but the leukemia will likely overcome any initial success of the Sprycel and return in an aggressive state.  So there will need to be a longer term plan which includes a transplant (BMT/SCT), and he should prepare for that.  There is not much else that would work.  You should read this:

https://www.blogger....=0;src=pagename

(Read item #4)

 

I will provide some basic information here dealing with the issue in general.  Philadelphia Chromosome positive Acute Lymphoblastic Leukemia (Ph+ ALL) is related to CML in that both forms of  leukemia have the Philadelphia Chromosome which creates genetic signals causing uncontrolled growth of leukemic white blood cells.  As  the names imply, CML is predominately a disease of the myeloid line (neutrophils, etc) of white blood cells (WBCs), while the ALL variant is primary a disease of the lymphoid WBCs (T-cells, B-cells, etc).  Beyond that, the "chronic" (CML) is generally a less aggressive form than the "acute" (ALL) form.  For CML, drugs are available which work for over 90% of all CML cases, but they work less well for Ph+ ALL.  That is especially true if the blast count has become as high as his was at diagnosis.  That shows instability and an acceleration of the disease. 

 

Ph+ ALL is generally a more aggressive form of leukemia than CML, and does not respond very well or very long to CML drugs (Gleevec, Tasigna, and Sprycel, Bosulif, Iclusig).  But there are some cases where the drugs have helped, especially in getting the patient into a state where they are in better shape for a bone marrow transplant.  In general, Ph+ ALL usually results in the need for a stem cell transplant since it is more likely to become resistant to the drugs than regular CML.  So Ph+ ALL drug response is often short-lived.  Sprycel may have the best chance of working of the drugs, but the response will probably not last.

 

The Onc will be trying to first put him into a state to better withstand a bone marrow transplant.  This will be done using chemotherapy (induction phase).  This would be stronger chemo than Vincristine.  A CML drug may or may not be used during or after the chemotherapy.  This should be a question to ask the Onc.  If he becomes stronger and a suitable donor can be found, it is very likely the Onc would want to proceed with a transplant while he is in a stronger state, since that strength can often be lost over time. 

 

To help with a final diagnosis a Flow Cytometry test needs to be done.  That will help show more clearly what types of leukemic cells he has.  Ask if this test has been done.

 

Questions for the Onc:

1) What is the final diagnosis?  Has a Flow Cytometry test been done?

2) What is the treatment plan and sequence of events?  After the initial chemo, what happens and when?

3) Is a transplant being planned?  If so, when will the donor search process start?

4) Would the Onc contact Dr Talpaz at University of Michigan about the case?

Edited by Trey, 16 January 2016 - 10:19 AM.

[Kresendis]

Thank you so much for the information! I really appreciate all of that. I didn't realize he should be on a stronger chemo. From what I understand, the doctor said he will do 4 doses of the vincristine, along with steroids and Sprycel. After that, he will be getting a bone marrow transplant. I've been trying to get him moved over to University of Michigan but we had a couple insurance issues. I want to get him in with Dr Talpaz as soon as possible.

[Kresendis]

I clicked on that link, but it says it's not available.

[houtex54]

Your situation is similar to others I've read on this discussion board.  Trey's advice is invariably excellent.  There is often a lot of confusion and disagreement between doctors making the initial diagnosis.  The pathologist's diagnostic report is usually considered the final word, but that takes several days to develop.  

 

Prayers for a good outcome for your husband and relief for your worries.  

[Trey]

He should not be on a stronger chemo yet.  A suitable donor must be found and a timeline for the transplant must be put in place. Then his doctors should use the stronger chemo to wipe out his existing blood making system entirely, after which they will transplant the donor cells into him. 

 

In the meantime the Sprycel may work for a while.  If not, additional chemo can be used to knock back the leukemia again.  But this only works a few times before it becomes ineffective.  So chemo should be used very sparingly until the transplant process begins.

[Kresendis]

Thank you for the info Trey! I appreciate it! Does anyone have any resources or know of any online support groups for people in blast phase?

[Trey]

I think you have found us already.  There is no better place than here.

 

If you want stuff to read, here are some suggestions:

 

Transplant:

https://www.blogger....=0;src=pagename

 

Blast Phase CML:

http://www.bloodjour...so-checked=true

http://asheducationb...2007/1/384.full

 

 

Ph+ ALL:

http://www.bloodjour...ent/125/24/3674

http://www.bloodjour...ent/125/24/3711

Edited by Trey, 16 January 2016 - 10:24 AM.

[Gail's]

I so appreciate your willingness to help us newbies, Trey. I only had 5% blasts at dx so 90% is shocking to me. Kresendis, besides enlarged liver and spleen, what other symptoms did he have? Fatigue?

[Kresendis]

He didn't have any other symptoms whatsoever. It all started with the abdominal pain so we went to check it out and that's when they found the leukemia.

[WiscoTex]

Hi there,

My dad is in blast crisis as others have mentioned on this post. He is only on Sprycel right now. He was diagnosed in last crisis about 6 weeks ago. They put him on 140mg per day then take him off when his counts get too low. He just took his first dose of 100mg Sprycel today. Hopefully evens him out. Still looking at a bone marrow/stem cell transplant around March.

Feel free to reach out of you need anything. This is a total roller coaster.

[Bb1823]

Hi there, I wish I could give you a hug! My husband and I were on this roller coaster in the fall of 2014 when I was 4 months pregnant with our first child. I really can't give you any medical advice except that blast crisis is a tricky animal and just to trust your doctors. Most of the information doesn't apply since most people are diagnosed in chronic, but all of the blast crisis info is also very scary since not too many people fall into this boat and move to this phase after they have stop responding to TKIs. My best advice is to take it day by day, that's all you can do. Get through these initial few months and hopefully by then your path will be clear and you will just have to buckle up and get through he ride. My husband is currently PCRU on 140mg of sprycel and doing wonderfully. He had a haplo transplant in April with his sister that unfortunately didn't take. So he is just getting frequent follow ups for now and praying every day the sprycel keeps things in check long term. Best of luck to you guys, hang in there.

[Bb1823]

One other piece of advice... Don't be scared of the transplant, try to embrace it. It's a powerful treatment option that offers a cure. It will be a tough year for the both of you, but you will get through it. Think of it as a positive, not a negative!