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I Can Do This.


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#1 Brandon G

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Posted 23 May 2015 - 08:53 AM

As I sit in the hospital, laying there (on fall risk), with the tv off, I think about all the great memories I've had. My CML is getting more aggressive as time goes on. I was supposed to start chemo last Tuesday, but the high dose of Sprycel really took a toll on me. I am feeling better since I got admitted on Tuesday. I will probably start chemo within the next few days. Then I will have to have another BMT. This time there is only a 20% chance that I can achieve remission and if not I will only have a matter of months left? So just like that? I do all this fighting... and this cancer is going to take over my body at 27 years young. That's not fair. As soon as life was getting really good... this happens!

 

Yesterday, I had to sit my beautiful girlfriend, Arielle, down (who I was planning on proposing to soon) and wanted to prepare her for the best case and the worst case. She has been so supportive through out this whole process talking to doctors, filling out massive loads of paper work, keeping all 100+ family members and friends informed. She has always been so hopeful and optimistic. We had such great plans for us. I would be disappointed if I wasn't able to share them with her.

 

Even though yesterday was full of tears, today I will continue to fight. I will be in that 20%. I will be that 1 in 6 people who achieve remission through this. I will never stop fighting for my future and for Arielle. This is not it.

 

Is there anybody out there who's CML turned aggressive quickly? Doctors say I also have AML in my lympnodes underneath my armpits. Anybody who has had to have a second BMT? I would really appreciate any success stories to motivate me to keep fighting (because as I'm sure you know, some days are just tough and draining).

 

Posting this in CML and SCT.

 

Thanks in advance for all the support,

Brandon



#2 Gail's

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Posted 23 May 2015 - 11:00 AM

Random, I am so sorry to read of the struggle you've had and am hoping the best for you in your treatment. You are absolutely right to have hope to be in the 20%. Since I am new to the cml process, and can't offer any facts or figures, I want you to know I will be rooting for you and Arielle and your family. I will follow your story, so please keep us posted.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#3 Gail's

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Posted 23 May 2015 - 11:01 AM

Sorry, Brandon, autocorrect didn't recognize your name!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#4 acl

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Posted 23 May 2015 - 02:14 PM

Hi Brandon,

I am sorry to read of the stress you've had, your CML turned aggressive. My hematologist/oncologist told me that he has never had a patient whose CML turned into Acute myeloid leukemia, but, I didn't believe him. Is it possible? My thoughts and prayers are with you, your girlfriend and family. Please keep us posted.

 

acg.


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#5 Dom

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Posted 23 May 2015 - 05:01 PM

Hi Brandon. I'm so sorry to hear your story. They always say that CML is an old timer's illness, so I hate hearing about people in their twenties going through it. What can I say? I'm praying for you and thinking of you. You definitely have a chance, so hang in there and let us know about your progress.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#6 dede5

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Posted 24 May 2015 - 08:41 AM

Brandon, my heart goes out to you. It sounds to me like you have a wonderful future planned, and that is worth every bit of the fight, difficult though it may be. Keep your eyes on the prize beyond that major hurdle, and the fact that, if you get past it, you may be in the clear. I don't know if anyone has ever beaten those odds, but there has to be a first one, might as well be you. I will be keeping you and your family in my heart, thoughts, and prayers. Please keep us posted.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#7 SusanL

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Posted 24 May 2015 - 11:10 AM

Dear Brandon,

    Every time I hear of a young person who has any kind of cancer my heart groans with "it's not fair, please God, not the young".  I admire the hope that is in you, hold on to it and feed it with others around you who also have hope.

   If it makes your day any brighter your message really made me stop my slippery slope of hopelessness.  I am 74, but we still struggle with it's not fair.  My "not fair" involves just finding out I have another serious disease and a major surgery ahead.  the past 2 days I have had thoughts of giving up, I can't do this, they had almost taken over when I read your message.   I made a pack with your message that I will always keep trying and when my strength and resolve and efforts fail, will fall on the arms of a loving God who will do it for me.

  Keep fighting young man, you are worth it and people need you.

Susan



#8 ------

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Posted 24 May 2015 - 04:06 PM

Brandon,

 

I prayed for you in church today and will keep you in my prayers.

 

MDJ

God Bless



#9 Trey

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Posted 24 May 2015 - 06:35 PM

Not all myeloproliferative diseases are the same with regard to ability to wipe out the patient's diseased blood making system prior to transplant.  And not all MPDs require wiping the slate clean before transplant.  CML, which you have, is probably the hardest MPD disease to kill off since it starts very high in the hematopoietic stem cells, and these highest level leukemic stem cells can hide deep in the bone marrow niches where the chemo and radiation have a hard time reaching them.  It also is more likely to relapse after BMT because of the higher probability that some leukemic stem cells may escape the conditioning regimen.  MPDs such as ALL and others start at a lower level in the blood system so the diseased blood cells are not as difficult to kill off, and so the regimen may not need to be as rigorous.  That would allow for more time between conditioning and transplant.  But for CML the time from end of conditioning until transplant should be very brief since the conditioning needs to be more rigorous and must attempt to wipe out the blood system out completely.

 

The second line of defense is the graft vs leukemia effect (GVLE) whereby the donor cells become dominant and kill off any remaining leukemic cells because they are now seen as "foreign" cells by the new blood system.  This requires a very high level of engraftment.  For you this did not happen.  DLI can be used to help with this GVLE if the donor cells reach a high enough percentage, but your level of engraftment was never high enough.

http://community.lls...5299-ugh-again/

 

The docs say you have AML under the armpits.  It may just be a matter of nomenclature, but your disease is called Philadelphia Chromosome Positive AML (Ph+ AML), which is CML that has advanced to look like AML.  Same difference, same treatment (BMT).

 

For most patients with CML the disease remains more stable for longer.  If untreated, all CML advances to look something like yours, although it would take one of two tracks whereby either the myeloid or the lymphoid cell lines dominate. 

 

The good news is you are young enough to be able to better withstand a second BMT. 



#10 alexamay09

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Posted 25 May 2015 - 02:21 AM

Brandon, I just wanted to send you my kindest thoughts and hopes for you to beat the odds with this.  Never give up as long as you have breath.  The mind is a powerful tool and while you are physically struggling you are mentally strong. 

 

Alex

x



#11 Brandon G

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Posted 25 May 2015 - 08:46 AM

Wow Trey, you know more than my doctor. Thank you so much for your post. That really helps me understand whats going on!



#12 Trey

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Posted 25 May 2015 - 12:13 PM

For more information on BMT for leukemia:

http://community.lls...ransplant +stem



#13 Brandon G

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Posted 27 May 2015 - 07:43 AM

My doctors called the donor, but they haven't set up the date yet. I am concerned with the gap between doing chemo (which I started yesterday for 6 days) and the BMT. My doctor says it doesn't make a difference because my counts are low. Does it make a difference?

 

With my first BMT, I went into it physically strong with my counts up and this time I am physically weak and my counts are low.



#14 Trey

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Posted 27 May 2015 - 09:21 AM

With CML you should be having the transplant on the very day you have zero immune system remaining (WBC = 0).  When you have zero immune system then you are in an extremely hazardous condition since even a cold or flu could be potentially deadly, so you should not be out of the hospital without adequate safeguards. 

 

It seems from what you are saying that the second transplant plan is also not going to wipe out your old blood system.  That did not work the first time around.  As I mentioned above, CML starts higher in the blood making (hematopoietic) system than most other blood cancers, so it is harder to kill off completely.  So although a reduced intensity conditioning (RIC) transplant (leaves the immune system intact but stunted) might work for something like acute lymphoid leukemia (ALL) where the leukemic cells start at a much lower cellular level, a RIC rarely works for CML. 

 

So the old hematopoietic system must be reduced to as near zero as possible to allow the donor cells to take over, and prevent the leukemic cells from regaining control.  That was the cause of your previous transplant failure, as your old blood regained control quickly and killed the donor cells.  Apparently the donor cells were unable to mount a strong enough graft vs leukemia effect (GVLE) since they were outnumbered.

 

Even if your old blood system is taken down to WBC = 0 there will likely still be WBCs which escaped conditioning.  So there should not be a delay before infusion of donor cells.  That would allow any remaining leukemic WBCs to regain strength.  But if the donor cells are infused right away they will hopefully kill off the remaining "stunted" leukemic WBCs due to GVLE.

 

Here are some questions to ask:

1) Is the plan to do a reduced intensity conditioning (RIC) transplant?  If so, why?  Didn't that fail the first time?  Doesn't history show RIC does not work for CML?

2) If the plan is not RIC, will my immune system be wiped out before the second transplant?  Will my WBC = 0?  If not zero, then isn't this a RIC process?  What is the goal for the conditioning process?

3) If the docs don't think you are strong enough to withstand a full chemo/Rad conditioning, then should the process be delayed until you are?

4) If condition leads to WBC = 0 but there is a break between the conditioning process and transplant, doesn't that allow the old leukemic blood cells to regain strength and set up the chance of transplant failure again?  (Note: WBC = 0 does not mean the old blood is completely gone -- trying to get to "absolute zero" would do serious harm to the patient)


Edited by Trey, 27 May 2015 - 09:23 AM.


#15 missjoy

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Posted 27 May 2015 - 12:12 PM

"The bone marrow has a protective effect on CML stem cells, and enables them to evade eradication by existing drugs," said Arnon Nagler, MD, of the Sheba Medical Center in Israel, who will lead the new study. "Preclinical data have shown that BL-8040 efficiently synergizes with imatinib in vitro and in vivo, overcoming the protective effect of the bone marrow, and we therefore hope that the combination of these two drugs will override drug resistance and suppress residual disease."

According to the articles I read BL 8040 is very effective. There are clinical trials on AML and CML. If I remember well, it has been used with BMT to enhance the effective ness. You migt ask your doctor about it.


Wish you the best from my heart!

#16 Brandon G

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Posted 27 May 2015 - 06:40 PM

Trey,

 

My counts are zero and they want to be aggressive so that the cancer does not grow back. That's why my doctor said she is doing chemo now. They said if the donor date wont be for a while they will do a light 3 day chemo in between. I have 12 blasts cells. My doctor said it will take 7 to 14 days to crush the cancer after the chemo so I figure now if its a week or two gap it should be fine because of my number recovering.

 

Thank you for those questions!






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