Phil,

I don't know what to tell you. I got radiation and chemo (not low dose) before my transplant. I wanted to kill off all of the leukemia cells that were lurking. Perhaps lower dose pre-transplant conditioning is going to be the way to go in the future. Please tell me what the pros and cons of each treatment are and I will give you a considered opinion.

Cliff

Phil,

If I were you, I would not go into a trial with low dose chemo. You are just 45 and should have full strength chemo/radiation which will completely destroy your bone marrow along with leukemic blasts. Leukemic blasts are very resilient, that is why the disease is so aggressive. Low dose chemo for transplant always carries higher risk of relapse, because some blasts can survive chemo. Usually low dose chemo before transplant is offered to older folks or for patients who for one reason or another can not tolerate full strength regimen. I think you have the best shot with full-strength transplant. Good luck to you.

Phil -- this is a tough one. For sure this is something new -- I have not heard of it before, and if you go for the trial you will be breaking new ground. However, there has to be some rationale for the intensive pre-transplant chemo that is now fairly standard. Please keep us up on your decision. Either way you go is going to require courage on your part. We are praying for you -- dave

Dave,

I hate to inject more uncertainty about this, but I have to agree with you Not only did I get strong chemo, but I also got TBI. Phil is 15 years younger than I am, so I am not sure why they would consider a low dose regimen. Obviously, the only way to learn is to try new things, but my doctors had me go through a rigorous conditioning. One thing that has to be kept in mind, however.....radiation, if that is contemplated for Phil, has a significant risk (7%) of causing a second malignancy (usually a skin cancer, but also solid tumors). So Phil may not get the radiation. I am afraid I am out of my league on this one....I just don't know I could pull some articles addressing this issue, but then I would be butting in where my opinion is really not warranted. As I have said many times before....you must trust your doctor. When my patients don't trust me, I tell them that they should consider getting a different doctor. I am very adamant about that. So, Phil....if you read this note to Dave....stick with your doctor's recommendations, BUT ask 1,000,001 questions. You need to know what evidence there is favoring a less aggressive conditioning. I know that it is used in older people who have premorbid conditions. Let us all know.

Sorry Dave for combining a little Phil in here.

Cliff

Cilff (and Phil) -- no problem, this is a serious decision for Phil. There might be an upside that they will monitor him very closely to be sure that the low dose chemo is doing what it is supposed to do. I can also see an upside in that, if it does work, it will leave him stronger for the transplant. So, there are tradeoffs here. Neither one of us want to, nor are we in a position to, offer advice. At best we might be able to throw out some considerations. But the ultimate authority has to be your med team. If you cannot make the decision now, just get all the facts, pray about it, sleep on it, and when you wake up -- do the first thing that comes in your mind. And never look back!!! Go for it with all that you have! -- dave

Phil,

I do not envy your situation. I think when it it comes to clinical trials our Drs can get a bit zealous. This is what they love, finding new drugs and advancing medicine, it is what make them tick. Personally, I like to see that excitement.

I think the thing to remember is a clinical trial is not proven. That does not mean it won't work it's just not proven. Second a trial is voluntary. My advice gather your information, ask your questions, take a step back and have a long talk with God. He's brought you this far and He will help you with this decision also.

Trish

Thank you for the advice everyone, im kinda torn on what to do. The low dose chemo is for my transplant. They say from what ive read the low dose ofcourse you have less during and after side affects is a big advantage and the low dose relies on the donors good cells to kill the rest of the lukemia cells instead of the chemo. I think im gonna stick with what works and go with the higher chemo.

Today... was a loooong day for me... i spent all day yesterday getting that pre-testing done. This morning i was woken out of a dead sleep with deep sharp off and on chest pain. It wouldnt go away so i went to the ER. They gave me a EKG, CAT scan, and did blood work and didnt find anything. They gave me some med for the pain which was pretty strong and made me feel out of it but better. I mentioned to the ER doc about the boil and he decided it needed to be lanced so after speaking with my ONC doctor they put me to sleep and lanced it, needless to say i guess from all the meds i have a splitting headache. They never found a problem with my heart, i guess atleast the boil is taken caere of anyways... shewww... im wore out.

Phil,
I am so sorry that you have a serious consideration regrading treatment t planning and had chest pains. I was so hopeful that things would be going smooth for you.
Having the boil lanced is probably a relief anyway since it was such a problem. I suppose being in pain and turmoil can create chest pains. Thank goodness they did not find anything on the EKG.
Be well. I wish you well in your decision. I agree with Cliff in terms of decisions, I whole heartedly trust my oncology/transplant group. I look them right in the eye. Now, even with the clinical trial and the referral for the Haplo, I go back to my oncologist, who still manages all care - why, I trust her and the group completely.

Stay well,
Andrea Bozzi

Phil,
Glad to hear you are on your way to transplant, it is amazing how long it can take to do all the testing, not to mention exhausting. Sorry to hear about your trip to the ER, but you were right to go, chest pain is nothing to ignore. I am happy to hear that your heart got the all clear and that your boil was taken care of. So all in all, good news on your heart and I know you have a heart of gold! Rest and know that the Lord is good!
Take Care,
Suzanne

Phil,

I was sorry to read about your ER ordeal. There are a lot of tests you will still likely have before your transplant, relating to the heart (cardiac echo, possibly a stress echo, and pulmonary function tests. It's a pain in the "boil." Glad that was taken care of. Now that your are getting close to your transplant, it is natural to be on edge and that means that your sympathetic nervous system is working overtime and likely giving you a bunch of symptoms. The more nervous I got, the more episodes of "animal planet" that I watched, and as I said before, I am now an expert on the mating behaviors of bears.

Get your mind off of all of this. You will do well. You are young and healthy. Not a geezer like me.

Be well.

Cliff

Thanks for the well wishes everyone :) all i can say is my butt hurts LOL.

Yeah, the decision on low or high chemo is a tough one, actually in the trial a computer picks which one you get, like i said i think im gonna just stick with whats proven and go with the high dose. It truly worries me with having my skin condition, it seems like i get these boils no matter how clean i try and stay. Ive talked to the ONC and my transplant doc about it. The transplant doc says so far tests have proven that low dose and high dose have the same results but im not satisified. I think with me being young i can handle the higher dose and it would be better for me in the long term. I dont think they plan on giving me any radiation, just the chemo.

They did all that testing on me thursday.. EKG, ECHO, Pulmonary, Urine, CBC. etc. so hopefully all that will come back okay. Its been a heck of a week. Dentist, pre-testing, ER, and tomorrow back in the Hospital. Im not complaining though, i know people out there have had it tough too with the storm and i hope everyone is okay ! Love you guys and thank you for all your support !!

Phil,

After all has been said and done, I think that I would have made the same choice as you. The current regimens seem to be working and I know you will tolerate it. Keep eating as long as you can, because there may be days when you just can't. You might ask your onc to have an infectious disease guy see you, if you haven't already, because of the boil potential. Perhaps he/she will have some ideas

Please keep us informed about what goes on. We care deeply about you and would like to see you bounce back quickly. At Sloan Kettering, we were quarantined until our ANCs were over 1000. If they have the same rules where you are, make sure you see physical therapy and learn what you can do inside of your room. Physical activity is very important.Also, ask for an incentive spirometer, so you can force yourself to take deep breaths frequently to keep your lungs inflated to avoid pneumonia. Keep yourself occupied. I found that I could not concentrate enough to read, so I watched TV and listened to music.

I am wishing you the best of luck (which you won't need), with no infections and a quick release from the hospital

Cliff.

Phil -- good man -- it is the right decision because you made it. I do not think you will regret it. If tests showed there was not difference, why the trial? I think that you will have more confidence in things -- it will be tough, but you can surely handle it. Just keep fighting ... and praying. Take care -- dave

Phil,

Good luck today. Relax and go with the flow. Always remember, we've got your back.

Cliff

Phil, Best luck to you. Take one day at a time. Stay positive. You will be fine. You are in my prayers.

Violet