10 replies to this topic

[WorriedAunty]

A precious family member, 30 years old, recently married, renovating their first home, planning to start a family, has just been diagnosed with CML in the blast crisis phase.

We are all devastated and shocked.

Before this happened, and up until a few weeks ago, he was fit, strong and healthy.  He didn't have a clue there was anything wrong with him.  He has been so healthy, he hasn't needed a blood test in over 5 years.  Over the last couple of weeks though, he thought he had a virus that he couldn't shake, as he was feeling tired and wasn't interested in eating.  He had a little abdominal pain, that he put down to gastro.

He finally went to the doctor, who advised he had an intestinal infection, and prescribed antibiotics, four days later, he felt worse and went back to the doctor for a blood test.

Two days later, he was bed ridden and vomiting.

The next day, he got a call from the doctor to advise him to get to the hospital immediately.  He was diagnosed with CML before he was even admitted.

Four days later he was stabilised enough to do the bone marrow biopsy. 

His results came back today, his CML is advanced and his only option is a BMT after a series of chemo and radiation treatments.

Is there anyone out there that has been through a similar scenario?

Thank you.

[CMLSurvivor]

Sorry to hear about your family member. It is not typical in this day and age to go straight to the BMT. Usually they start with the TKIs first and once you work your way through the different types there are three currently that are popularly used, then they go to the BMT. Good luck on you and your family members journey through this difficult time in your lives. You are in my prayers. This site is full of very useful information to help you out. Everything from symptoms to treatment to support.

[Pesty]

Hi My name is Michelle, 32 and have also experienced Blast Crisis CML.

I am in the UK and was originally diagnosed in 2009 in Chronic phase CML. The TKIs that CMLSurvivor mentions are used for Chronic phase CML. They keep the CML at bay and stop MOST people progressing to the more agressive form of CML - Blast Crisis.

I never really had a good response to these TKIs and near enough exactly a year ago went into Blast Crisis.  I too had very few symptoms. I was young, fit and very healthy.  I was diagnosed with 100% blasts in my blood and bone marrow.

I had two rounds of chemo to get me back into a 2nd chronic phase remission (under 5% blasts) - which is only ever temporary and proceeded with a full transplant with chemo and radiation 5 weeks later.

Dasatinib, one of the TKI's has been used for blast crisis CML and CAN be used as part of the transplant regime to keep blasts at bay but again will only be used as a temporary solution to get you to a bone marrow transplant,

It is a long slog and not an easy road. But it is doable, very doable.  There are another couple of blast CML patients that have had transplants that float around this board and I hope they are also along soon.

When I found out I was in blast crisis I already knew a lot about CML and decided I just needed to look at it as taking 12 months out to finally get rid of this damn disease. I am always around to ask questions if you want to get in touch. I am now back on my feet, I am back horseriding, dog walking, playing netball and I am just starting to go back to work.

The road is bumpy and can be scary at times but I am sure your family member can do it as long as he keeps focused and determined.  I won't scare you with details of the actual process and confuse you with the finer details just yet, but it can be done. I hope this post reassures you somewhat.  If you want to contact me privately please feel free... pesty at hotmail dot co dot uk.

Here I am getting my life back on track having overcome CML blast crisis.

Love to you all as I know how scary this can be.

Michelle

x

[Trey]

The most important thing to do before allowing any chemotherapy is to confirm the Blast Phase diagnosis.  Oncs can misdiagnose the Phase, especially if they are not a true CML Specialist.  If it were me, I would definitely get a second opinion before allowing chemo, since that can mask the true CML status once it is started.  I cannot stress the need for a second opinion from a true CML Specialist strongly enough when diagnosed in Blast Phase.

There is also the option to try Sprycel before chemotherapy to see how it works.  It can sometimes work for Blast Phase CML, although the odds of success are reduced.  If it is truly Blast Phase, a BMT may be necessary.  But he should slow the Onc down and get the second opinion before anything is done, although the BMT planning process should continue since it can take a long time.

Get a copy of the Bone Marrow Biopsy report.  If you wish, you can post what it says so we could comment further.

Here is some info about BMTs:

http://community.lls.../message/101607

[JoshLee]

Seeing a specialist will not only give you the best information and treatment plan, but let you know as a family that you are doing ALL you can do. If you have the means to see a CML specialist, go. There are specialists at MD Anderson(Kantarjian and others), University of Michigan(Dr. Talpaz), OHSU (Dr. Druker, Dr. Mauro), Dr. Shah in San Fransisco, and many others.

[wallystl]

Good Morning:

What a good friend you are!  I wanted to add that the success of a BMT has much to do with the choice of a Cancer Center & Team.  Please do some research on cancer centers across the country.  Look for NCI (national cancer institute) approved centers.  You can check the number of transplants done -v- success rates, on line.  Look closely  at the health insurance plan, assets available during a prolonged recovery, advanced medical directives and POA, so on. I'm sorry for your situation & wish your group the best of luck with this situation.  This board has helped me, its here for you too.  Use it!

[WorriedAunty]

Thanks everyone for your advice and support.

I'm quite confident now that the medical care he os receiving is at a high standard (it's a cancer specialist hospital in Aust).

The road is still very long and scary, but we are all staying strong and positive.

Before his sudden illness, he was a fit, healthy young man, which will help him fight this demon.

I'll continue to browse thus website, as it's about the only thing that has provided comfort over the last couple of nightmarish weeks.

Thanks again and my best wishes to all.

[Trey]

One of the best CML Oncs in Australia is Dr Timothy Hughes at Royal Adelaide Hospital

http://www.adelaide..../timothy.hughes

[WorriedAunty]

His everyone,

Update on my family members condition, and of course any thoughts and advice would be greatly appreciated.

Apologies if my acronyms or wording isn't medically accurate, I hope it's descriptive enough to understand,

His BMT is yet to be scheduled while a match is found.  His siblings weren't a match, but his transplant coordinator has advised that she has a plethora of matches to choose from, so she is taking some time to find the best candidate.

In the meantime, he was sent home on 2 x 50g Dasatinib, but that was withdrawn after around 14 days, as his rbc and platelet counts were dropping too low (rbc&lt;70, plt <5).  He is still not on any medication.

He has been off Dasatinib for over two weeks now, but has to go for regular blood and platelet transfusions, almost every other day.  His counts are improving slightly, but his  WBC is remaining low, and slightly dropping to about 1.5, his neutrophil count is staying worryingly low at around .05

He is scheduled for a bone marrow biopsy this week, so the docs can get a better idea of what's going, before they decide what's the next step is for his treatment.

Thank God, he is feeling well, and is staying strong, despite having the life he knew pulled out from him and replaced with endless blood tests, transfusions and appointments.

With this amateur description of what is a complex and deceptive condition, does it sound like it's going along OK (or as OK as can be expected?).

Thank you.

[tiouki]

Hello,

Sorry to hear this bad news,

It's very common that the counts decrease at the begining with sprycel. I hope he will be able to get back on it, maybe at half dosage?

Do you know what was his blast count (it's a percentage) at diagnosis? This is what defines blast phase (0=>10% = chronic phase, 10=> 20% = accelerated, >20% = blast)

Good luck

Pierre

[Trey]

Did they give him chemotherapy as well as Sprycel? 

IF THEY DID: Then there is no way to know whether the Sprycel alone would have worked.  Which is why I made my previous comments about not allowing chemo.

IF THEY DID NOT: His situation appears to be that he responds to the Sprycel, which kills off the leukemic cells, but it also appears that the leukemic cells are the only blood cells he has.  So the Sprycel kills off the leukemic cells, and nothing much remains.  That would be a difficult situation.

Most Oncs will want to do a BMT.  The key is to have a suitable match, which means different things to different people.

http://community.lls.org/docs/DOC-1375