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Update Don Adkins

Hi Everyone,

I haven't posted to the site for sometime but read it quite often. You are such a great group of people with a wealth of knowledge. I appreciate each and everyone of you. I am amember of a few sites, so If you visit those sites you might see the same post. It's so long I didn't want to keep rewriting it -- I'm still lazy at times...

I thought I would post an update since I just passed my 3 year post-transplant date, October 5, 2004.

A little history....I was diagnosed in August of 2002 and was still in the chronic phase, although the doctor thinks I probably was in my 2nd year of the disease. I don't know how he could really tell that except from the symptoms I was having the prior two years, ie, tired all the time.

I started taking 800mg of glivec in early September of 2002. My WBC returned to normal from 87K at diagnosis. Other than the standard side effects, eyes swelling, nausea at times, etc., I was in remission with a minimal PCR of approximately .014. After about 18 months, my PCR started to climb dramatically and glivice lost its effectiveness. I continued taking glivec until I could find an alternative, although it wasn't working very well for me. I was rapidly approaching the blast crisis phase.

My doctor recommended that I have find a cancer center of excellence and get checked out, preferably one that was very familiar with CML. I decided on MD Anderson, and after a couple of months of fight with my insurance, I finally showed up on their doorstep.

After I arrived in July of 2004, I was assigned to Dr Kantargian at the Leukemia clinic for evaluation. After testing, it was determined that I had entered the blast phase and something needed to be done right now. He recommended a BMT but said that unless he could return me to the chronic phase that it would be fruitless. So he recommended that I go into one of the two trials that were going on at the time. the BMS and AMN trials were both in phase two, and were having some early success. I couldn't get into the BMS trial for six weeks because of the waiting list. Dr Kantargian was running the AMN trial so he placed me into that one almost immediately. No one knew what dosage to use at the beginning since the trial was so new so we started out at a very low dose to just see if I would respond.

Within one week my blasts were rapidly reducing. After three weeks I was at zero. The drug worked and had returned me to the chronic phase -- where I needed to be for the transplant. While I was going through this trial my siblings were tested to see if I had a match. My younger sister was and exact match so the BMT clinic proceeded to make all the arrangements to perform the transplant in early October 2004.

I had the transplant on October 5, 2004 and everything went as smooth as it could. Of course I had numerous ups and downs the first 100 days, acute gvhd of the skin and liver. These were both beat back with the anti-rejection drub and finally subsided.

I returned home in January 2005 with a PCR that was undetectable and 100 per cent donor. I was weak but happy.

In early March of 2006 my PCRs started coming back with some positivity, although at a very low level it was very worrisome for me. Later that month I was exhibiting some tumor growth in my abdomen and lower extremities. Some of the tumors were removed and sent to MD Anderson for a biopsy. It turns out that the CML was back and had tumorized, although my PCR was still at a very low level, the tumors were growing out of control.

The choices at that point were to have another BMT or wait for the approval of Sprycel in June of 2006 to see if that would work. I wanted no part of another transplant unless that was my only option so I started taking Sprycel in June 2006. Within three weeks the tumors disappeared and were not detectable by a PET scan...miraculous. My local oncologist was simply blown away with the rapid results, and so was I.

I have been checked quarterly by either a BMB or PBPCR and PET scan, and have been undetectable by both since.

Although I still suffer somewhat from the side effects of Sprycel and chronic GVHD of the skin, eyes and mouth, I am very happy just to be here

There are some doctors who are very familiar with Sprycel that think that I could probably stop taking it since my immune system has grown to be much stronger and appears to be very active since I still have chronic GVHD. I'm just not brave enough to make that step right now, maybe some day.

I am head to Houston on the 4th of November for a three year post-transplant checkup. I also will visit the Optho and the GVHD doctor to see if I can find a better way to treat this disease. I hear they might have some new treatment protocols -- sure hope so.

All in all, I'm extremely blessed to be here today and just wanted to share this story with all of you to let you know that there is always hope. Just keep on keeping on....

The very best to all of you,

hello Don,
i am so please to hear from you, thankyou for updating your story here so that everyone can read it.
i can only agree with you that it is remarkable that you were able to fight your disease after it had become so complicated. this sort of transformation into solid tumour is very rare and yet you were fortunate enough to be 'in the right place at the right time' and that dr. Kantarjian was able to act so quickly.
you are not far behind me.... i celebrated four years post transplant on 20th of this month and i am so grateful that i am still here to celebrate my daughters 22nd birthday on Tuesday next week.
i know you are still struggling with GVHD and side effects from Sprycel but you have a great survival story and i am sure you will overcome the GVHD eventually. i do hope you can find confidence enough to stop Sprycel too in the future... but i do understant your reluctance to take this decision.
good luck with your check-up in november. please continue to update us.

love and best wishes,
Sandy ;o)

Hi Sandy,

It was so good to hear from you again. Thanks for the kind words. You are correct about CML rarely tumorizing. In fact the biopsies that were done locally mis-diagnosed them as a new type of cancer, lymphoma. They wanted to start chemo immediately and place an infusaport in my chest so we could get on with it. When I actually got to read the biopsy report, I was very skeptical because I kept seeing words like "could be", "suspected", etc, nohing that gave me a warm fuzzy that they knew what was really going on so I refused the chemo until I got another biopsy opinion from MDA. Their report came back quickly with much different results. They were absoulutely sure that it was CML since they had seen it in the past, but it is very rare. I'm glad I got a second opinion. I would have been very very mad if I had gone through that chemo for nothing....

I do hope to find a new treatment protocol for this bothersome GVHD, but it isn't so bad that I can't live with it, I think the key word is here LIVE. I am so happy to still be alive at this point that not much of the other side effects bother me to the point that I am unhappy. I've got to see my children and grandchildren grow and celebrate birthday after birthday, and for that I am thankful.

How are you doing? I hear through the grapevine that you are doing well.

I'll post my follow-up results.


Diagnosed May 2002
Interferon - no response
Glivec - brief response - increased dose but low platelet count
Stopped Glivec
Matched unrelated donor mini-transplant dec 2004
CMV reactivation (twice) - treated with ganciclovir
Immune thrombocytopenia - treated with immuno-globulin
Mixed chimerism - 2 DLI's caried out
GVHD (skin,liver,mouth) - high dose steroids
CMV retinitis and toxoplasmosis - lost sight in one eye
treated with clyndamycin and pyremethamine
Currently well
no gvhd
100% donor and PCRU

Life is now great


Hi Russ,

I replied earlier to you but somehow the post disappeared - maybe something I did, don't know. You've had a tough time but it sounds like things are improving daily. You really can't ask for more than PCRU, no GVHD and 100 percent donor. Now if I could only get rid of my GVHD I'd be right there with you.

Although, as I stated earlier, I had a relapse after transplant in the form of extrameulary CML tumors. The dasatinib erradicated the tumors, but I still take ot to treat the residual disease. Hopefully, I will stop it early next year if everything goes according to plan. I hope you continue to improve. Hopefully, I can continue to improve myself. This trip to MDA should give me much more insight into the latest treatment protocols for GVHD.

I was replying to your earlier post that also disappeard on steroids. I started 140mg )made me nuts) daily a few months ago to counter the GVHD. I have been tapering ever since and am down to 10mg daily right now. I'm staying on the dose until I see the Transplant doctor at MD Anderson on the 5th of November to get his take on this. It seems like I respond to steroids and it helps fight off the GVHD but when I taper off of it, it returns a few months later. I hate to keep repeating this cycle if there is a better way.

Take care my friend,

Hi Don,
i too am glad you got a second opinion! imagine if you had not been as pro-active a patient as you are and just let them get on an treat something that you didn't have! it is a lesson for us all.

what you may have heard on the grapevine is that i am doing very well and that last march my doctor told me that the 4th DLI (50 million donor lymphs) had done the trick and i was pcrU and very probably cured! note the word probably ;o))
anyway i am feeling really good and do not have to take any form of medication. i feel very very fortunate.
i really hope that your GVHD resolves soon. in a way it shows that the donor lymphs are doing their job i suppose but then it would be better if they just stopped attacking you;o)
my daughter is 22 tomorrow and i am really grateful that i am able to celebrate another of her birthdays. i remember when i was first diagnosed (verging on accelerated stage)and given around 12 months if i didn't have a transplant. all i wished for was to survive until she was 15! i don't know why on earth i thought she would be able to cope better at 15 rather than 12 but that was my goal in those first few weeks back in december '98! how fortunate we all are to have been able to be part of the revolution in cancer therapy that TKI's (like Glivec, Sprycel and Nilotinib) represent.
i wish you the best Don,
love to you and your family,

Hi Don, just wondering if you are still on TKI’s. My husband went through BMT recently for blast phase. Doctor wants him back on 140 Sprycel right away to help prevent relapse. That’s the dosage prior transplant to get him in a successful  remission. He had bad muscular pain side effects. We will talk with the doctor to see if he can take half that dosage. Just wondering how you are doing and what dosage you took post BMT. I realize this is an old post.