15 replies to this topic

[thatguy]

https://youtu.be/mXel-jlKEQ4

Found this thanks to another members' post. Alot of Good information throughout.

[Trey]

Although the information may be useful, I did not look at it since I was so distracted by the wallpaper behind him, as I searched for how many creatures and other images I could find in it.  I see a spider, a turtle, an eagle, a rooster, a bat-monkey from the Wizard of Oz (now I will dream about them as I always do after watching the WoO), a walrus, a scorpion, several fish, a squirrel (could be Herodotus), a dragon, a seahorse, quite a few bugs, and a Harley Davidson logo.  And that was just for starters.  Sober as can be, but thanks for asking.

 

I think that wallpaper should be transplanted.  Just sayin'

[Gail's]

Very informative. Thanks for posting thatguy. And I wasn't distracted by the wallpaper, Trey.

[thatguy]

You clearly missed the prowling lion, Trey. Please rewatch.

[r06ue1]

lol Trey, good stuff, made my first smile of the day.  

[Red Cross Kirk]

At 6:51 he shows a bag of prescription meds that need to be taken during the month after a bone marrow transplant.  WOW!  That is a lot of pills!

[PJM]

I am a CML patient who recently (Dec. 2015) had a transplant because no TKI worked in my case (tasgina, sprycel, bosutinib, and ponatinib).  Numerous mutations tests revealed no identifiable mutation.  I was transfusion dependent, at City of Hope 3x a week with transfusions totally over 70 along with countless neupogen shots to boost my white counts.  Based on consultations with my own Dr., Dr Snyder (the CML expert at City of Hope), and the CML expert at UCLA, I was urged to go to transplant while still in chronic phase.  Despite the transplant which was a horrendous process, my CML is still detectable with PCR readings of .03 and the latest in April of .11.  I have been put back on ponatinib, (which had the best response of all of the TKIs I took), along with a systematic reduction of immunosuppressants in order to induce more graft vs. leukemia effect on the remaining CML in my body. 

 

The cavalier attitude of some of the comments regarding the wallpaper I read regarding the video is not appropriate. Let me assure you going to transplant with CML is no laughing matter. Even though the major of you on this board are doing well on your TKI treatment, even discussing and implementing reduction of dose or stopping therapy altogether, there are those of us out there who have no alternative but a transplant in order to save our lives. I am not aware of other CML patients on this board who have a similar experience to mine with regard to TKI therapy and went to transplant.  All of us with CML form unique community.  Every one of us has been affected by this horrible disease and our lives have changed  because of it.  We need to support one another no matter where we are on this journey. I would love to have been one who responded well to therapy, but that was not my path. 

[thatguy]

I am a CML patient who recently (Dec. 2015) had a transplant because no TKI worked in my case (tasgina, sprycel, bosutinib, and ponatinib). Numerous mutations tests revealed no identifiable mutation. I was transfusion dependent, at City of Hope 3x a week with transfusions totally over 70 along with countless neupogen shots to boost my white counts. Based on consultations with my own Dr., Dr Snyder (the CML expert at City of Hope), and the CML expert at UCLA, I was urged to go to transplant while still in chronic phase. Despite the transplant which was a horrendous process, my CML is still detectable with PCR readings of .03 and the latest in April of .11. I have been put back on ponatinib, (which had the best response of all of the TKIs I took), along with a systematic reduction of immunosuppressants in order to induce more graft vs. leukemia effect on the remaining CML in my body.

The cavalier attitude of some of the comments regarding the wallpaper I read regarding the video is not appropriate. Let me assure you going to transplant with CML is no laughing matter. Even though the major of you on this board are doing well on your TKI treatment, even discussing and implementing reduction of dose or stopping therapy altogether, there are those of us out there who have no alternative but a transplant in order to save our lives. I am not aware of other CML patients on this board who have a similar experience to mine with regard to TKI therapy and went to transplant. All of us with CML form unique community. Every one of us has been affected by this horrible disease and our lives have changed because of it. We need to support one another no matter where we are on this journey. I would love to have been one who responded well to therapy, but that was not my path.

Hey, thanks for posting. I'm very sorry for your experience and dilemma. I reviewed this video because my Dr's don't feel that I'm responding properly, and have said the same about phasing to me, and how important it is. I've been for sct evaluation recently and matches were identified. What were your responses and times? What is the plan going forward?

[Kellyb333]

Dear PJM, it is so good to hear from you! I am so sorry for the pain you have been through.

[PJM]

Thank you for your kind thoughts.  To Thatguy, I know how difficult it is to be the small percentage that doesn't fair well with therapy and I sincerely wish you well in your struggles. To answer your question, I was diagnosed with CML in April 2014 with a PCR of 144% I believe.  It is hard to say exactly how long I was on the various TKIs.    Once my BCR/ABL started to rise, my Dr would either increase the dosage or switch me to another TKI. I never achieved any of the important markers such as <10% at 3 months etc.  I think it was 4 months each on  both Tasigna followed by Sprycel.  On Sprycel I rise to 40% so I was switched to ponatinib I believe in December of 2014.  I took it at all strength levels; 15mg, 30mg, and finally 45 mg. I was on 45 mg the longest.  Lowest PCR at 45 mg was 2% but eventually the BCR/ABL rose again.  I was switched to bosutinib but it  did very  little and my  PCR rose to >30%.  Blood counts were never normal with any TKI and by the time I was on 45mg of ponatinib, I was transfusion dependent.    I did, however, remain in Chronic phase throughout.  City of Hope started a donor search in summer 2015.   A 12/12 miracle match was found in Brazil in November and I was strongly advised at that time to proceed before the disease progressed.  I had my transplant on December 16, 2015.

 

The plan now is to take ponatinib to try and keep the BCR/ABL from rising further than it is now and maybe even lowering it.  Again of all the TKIs I took, I responded the best to this one.  Meanwhile, my Dr. is reducing my immunosuppresants (you take an unbelievable amount of pills post-transplant!) to try and allow my donor's stem cells to see my remaining CML cells as foreign and attack them.  This is called graft vs. tumor effect or in the case of leukemia, graft vs. leukemia effect.  I am trying to be positive that this plan will work.    Next PCR is scheduled for the end of May. 

[thatguy]

I'm incredibly sorry for the continual stress that must have been and is. I've both missed and met milestones, but I fortunately did achieve ccyr at 12 mo. I hope that my disease continues to respond with Tasigna, however my Dr already ordered Bosulif following a slight increase in my pcr (I'm really trying to avoid this so I went for a retest last week, hoping it's down again).

How do you feel now physically and mentally? The temptation of a cure is appealing to me (as though my choice is really optional in the end), but the risks obviously not...they aren't considering secondary transplant at this point I presume?

[rcase13]

Personally I would like to hear more from people that have had to go through the transplant process. It is a possibility for all of us.

[PJNM]

I feel very good with exception of joint pain, a possible side effect of ponatinib. i have put all of my weight back on and I finally have my taste buds tasting food again. I walk just about every day. I still need to be very careful about where I go, (no where that is crowded or has a lot of children), diligent washing of the hands, maintaining as clean as possible home, and careful food preparation. There are restrictions like I can't work in my garden, be in the sun, Etc. Recovering from a transplant is definitely a marathon rather than a sprint. It can take a year or more for the immune system to be fully back to normal.

Mentally is the toughest part. I am a Christian so I believe God is in control and I trust in that fact. I will not lie if I was PCRU right now my outlook at this point would be completely different. I choose to remain hopeful that my CML will be cured because I do not believe the Lord has beought me this far to just stop. My miracle donor came on the registry just at the right time. Prior to that, there were no matches for me anywhere in the world. Not one. City of Hope was talking seriously about proceeding with a cord blood transplant.

My advice to you is try every TKI you and your doctor see as appropriate for your case before you go forward with a transplant. (You did not mention ponatinib and it is the strongest TKI available even though it does have a high side effects profile.) For me, I needed to exhaust everything before transplant including getting a second opinion from UCLA because the reality is there is no turning back and you have to be 100% committed to the process and to the long recovery afterwards.

[gerry]

Hi PJM,
My doc has a transplant patient, transplant over 14 years ago, her CML is still making reappearances, but remains at low levels. I am assuming she continues on Gleevec. Sending thoughts and prayers to you that your level remains low and that you don't have any other major issues from the transplant.

[Trey]

This points out an important issue regarding BMT for CML.  Odds of successfully eradicating the CML are less than for other leukemias.  This is because the originating leukemic stem cell(s) for CML are higher in the stem cell chain than for other leukemias, so they are more likely to evade the chemo/radiation intended to wipe out the existing blood making system.  However, the BMT can sometimes result in a more treatable form of CML with TKI drugs.

[thatguy]

I feel very good with exception of joint pain, a possible side effect of ponatinib. i have put all of my weight back on and I finally have my taste buds tasting food again. I walk just about every day. I still need to be very careful about where I go, (no where that is crowded or has a lot of children), diligent washing of the hands, maintaining as clean as possible home, and careful food preparation. There are restrictions like I can't work in my garden, be in the sun, Etc. Recovering from a transplant is definitely a marathon rather than a sprint. It can take a year or more for the immune system to be fully back to normal.

Mentally is the toughest part. I am a Christian so I believe God is in control and I trust in that fact. I will not lie if I was PCRU right now my outlook at this point would be completely different. I choose to remain hopeful that my CML will be cured because I do not believe the Lord has beought me this far to just stop. My miracle donor came on the registry just at the right time. Prior to that, there were no matches for me anywhere in the world. Not one. City of Hope was talking seriously about proceeding with a cord blood transplant.

My advice to you is try every TKI you and your doctor see as appropriate for your case before you go forward with a transplant. (You did not mention ponatinib and it is the strongest TKI available even though it does have a high side effects profile.) For me, I needed to exhaust everything before transplant including getting a second opinion from UCLA because the reality is there is no turning back and you have to be 100% committed to the process and to the long recovery afterwards.

We have that shared belief, and you're now added into my nightly and morning pleadings with him... Hopefully that residual amount will present its vulnerability and be destroyed with a maintenance therapy. I recently spoke to a guy while golfing whose wife relapsed around 7 years in from a transplant, and under went a second and was active and v doing great he said. One treatment was actually at City Of Hope. I hope other aspects of your life are manageable and don't add to this burden. I really wish you the good news you're seeking.